Post #61 - 1st Birthday!!!!
Today at 11:42am Bill will officially have reached the one year mark post transplant. This is truly a happy birthday!!! The road that Bill has traveled over the last year has been one of the most difficult roads I have ever seen. He hit road bumps, potholes and ditches and a few near misses. I must say that without a doubt Bill's will to live, and all the wonderful prayers everyone sent his way, is what has carried him though the last year. I can't even begin to give him credit for how he has dealt with every pitch that was thrown his way.
Last week we found out that Bill has Hashimotos' Thyroiditis. http://en.m.wikipedia.org/wiki/Hashimoto's_thyroiditis Hashinmoto's thyroiditis(also called autoimmune or chronic lymphocytic thyroiditis) is the most common thyroid disease in the United States. Hashimoto's thyroiditis is characterized by the production of immune cells and autoantibodies by the body's immune system, which can damage thyroid cells and compromise their ability to make thyroid hormone.
From what I have read from some articles I found here at work, it is where your immune system attacks your thyroid gland. Sounds like GVHD to me. Bill has been on med's now for about 8 weeks and is just now starting to get some relief. The Dr. increased his dose to 137mcg after the 6 week blood test.
I kept a list of drugs that Bill has taken in an outpatient setting over the course of this journey, and as of today he is up to 48. At one point he was taking over 25 pills a day. I am happy to report that he is now down to four: Acyclovir, Bactrim, Levoxyl and beclomethasone.
Two weeks ago we had a trip to Moffitt for the one year bone marrow biopsy and PFT. We get the results one week from today on 11/16/11.
Please leave a post to wish Bill a happy birthday and thank you for following, and all your words and thoughts through this journey. Although the journey will never be over, it seems like the worst is finally behind us.
Wednesday, November 9, 2011
Sunday, September 18, 2011
Oh, My Thyroid!!
Post #60 It seems each month there is a new bump in the road.
Bill's visit to Moffit on Wednesday, August 17th went really well. Bill felt great and he looked great. The GVHD meds were continued for another month. Would you believe three days after everything changed. Bill was very weak, tired and extremely fatigued. It was a chore for him to get up out of bed. We waited a few days to see if things would get better before calling Moffitt to let them know what was going on and get their opinion on what we should do. Laura (our PA), who saw Bill 5 days earlier could not believe the change. After discussing all of the symptoms and observations it was decided we would see the local oncologist and have blood work done. The blood work came back normal for all levels with the exception of Bill's Thyroid function, it was off the chart. The reading came back > 100, which is the highest level the local lab could result. The newest aliment to add to the list is Hyprothyroidism.
Quoted from Wikipedia "Hypothyroidism is a condition in which the thyroid gland does not make enough thyroid hormone. (a deficiency of thyroid hormone)".
Another sample was taken and sent to an outside lab for a more accurate reading. Bill was started on Levothyroxine 25MCG. It takes about six weeks to see measurable results from the thyroid replacement therapy, so the wait begins.
Quoted from Wikipedia "Levothyroxine, also L-thyroxine, synthetic T4, or 3,5,3',5'-tetraiodo-L-thyronine, is a synthetic form of thyroxine (thyroid hormone), used as a hormone replacement for patients with thyroid problems".
The second blood test came back showing a level of 133. The normal high end of the range is 4.5. As the doctor said "This is an extreme case of hypothyoridism". The next step was to see an Endocrinologist locally to make sure everything else is OK. Dr. Go was very good and thorough in his physical examination. One side of the Thyroid gland is enlarged, so the doctor ordered an ultrasound of the Thyroid. The medication was changed to Levoxyl 100MCG and a blood test order was written for six weeks.
One cannot even imagine what Bill is going through. One day feeling great and then boom, knocked off your feet. Today he still does not have energy to do anything. He was on the Levothyroxine at 25MCG's for 15 days and now on the Levoxyl at 100MCG's for a week. I hope and pray that he will see some relief from this latest road bump real soon.
On a surprising positive note, I never thought this would happen again, we got a dog. Yes a seven month old Deer Headed Chihuahua - maybe mix as she looks like a mini pincher. Her name is Sookie, and Bill is her new best friend. She stays with Bill all day and keeps him company. Sookie was a rescue and we are happy to have her a part of our family. For those of you that watch True Blood, yes that is where the name came from. We are the third family that Sookie has lived with, and her final. She is a great dog, obedient and learns quickly. The father of the last family wanted to name her Sookie, but lost out to his wife and the name selected was Mini. She never answered to that name, but took to Sookie instantly. This tells me she is where she belongs.
On a positive note, we did make it to the BMTinfonet.org conference "Celebrating a Second Chance at Life Symposium". The conference took place in Atlanta, GA this year. Our flight out of Orlando was delayed 2 1/2 hours due to mechanical problems with the plane. Sitting in the airport was more than Bill could handle with his current situation. If the plane did not board when it did we were at the point of going home and calling off the trip. I was very proud of Bill for making the trip and attending all the sessions on Saturday and Sunday. It was a very difficult and long trip for him, but he did it. We did learn a few things at the conference and we also met and spoke with other transplant survivors, some that were 20 and 30 years post transplant. One of the many things that we learned is that problems related to the transplant can be with you for a long time.
My favorite session was "ask the expert". Eight renowned physicians from the best Bone Marrow Transplant hospitals in the country were on the podium answering questions from the audience. Claudio Anasetti, MD who chairs the Department of Blood and Marrow Transplantation at Moffitt Cancer Center was one of the eight. Of course I had to ask a few questions and was very pleased with the responses. One question we had related to Sookie getting her immunizations. Bill cannot be around children that have recently been vaccinated with live virus'. Did that hold true for dogs that are recently vaccinated with live virus'. It turns out, since the virus' are ones that humans don't contract, it is OK for Sookie to get her shots and for Bill to be around her.
I attended a networking session for caregivers and found it interesting to hear what other caregivers had to say. Some of them were very candid about their feelings, enough said there. One women, whose daughter is a survivor, talked about mucositis and how her daughter did not get it. Although this is not proven, it is noteworthy. The women is a dental hygienist and had her daughter using prescription strength fluoride toothpaste before and during the transplant. She is convinced the prescription strength fluoride toothpaste prevented her daughter from getting mucositis.
In several of the sessions we learned that the pesticides (chemo) and drugs that are used pre and post transplant can wreck havoc on the thyroid, hence the current road bump.
I would like to introduce everyone to my wife in high school. (Yes we had a make believe family with kids and all). Kris and I have been friends for over 30 years and the friendship has been valued and rewarding. Kris, who lives just outside of Atlanta, was our driver, tour guide extraordinaire from the airport to the hotel and then a few short trips around Atlanta and then back to the airport on Sunday, and finally an all around GOOD FRIEND. We had a very nice diner with her and her mother. Kris, thank you for all your kindness and help!!!
On Thursday, September 15 we had our most recent visit to Moffitt. Everything went well with the appointments, all the levels look good from a transplant perspective, just need to wait the six weeks for the thyroid medicine to kick in. The two medications that Bill is taking for GVHD have been reduced to once a day, down from twice a day. (Entocort (budesonide) and Beclomethasone).
When we got home I reviewed the blood work for the last few months and noticed that the Platelet count has gone from 212 on June 30th down to 88 on September 15th. Although his level is still in the safe range, we need to understand what could be causing the drop. During the August visit the doctor mentioned the drop to 108, but was not overly concerned.
Day 313 and counting!!!!!
Bill's visit to Moffit on Wednesday, August 17th went really well. Bill felt great and he looked great. The GVHD meds were continued for another month. Would you believe three days after everything changed. Bill was very weak, tired and extremely fatigued. It was a chore for him to get up out of bed. We waited a few days to see if things would get better before calling Moffitt to let them know what was going on and get their opinion on what we should do. Laura (our PA), who saw Bill 5 days earlier could not believe the change. After discussing all of the symptoms and observations it was decided we would see the local oncologist and have blood work done. The blood work came back normal for all levels with the exception of Bill's Thyroid function, it was off the chart. The reading came back > 100, which is the highest level the local lab could result. The newest aliment to add to the list is Hyprothyroidism.
Quoted from Wikipedia "Hypothyroidism is a condition in which the thyroid gland does not make enough thyroid hormone. (a deficiency of thyroid hormone)".
Another sample was taken and sent to an outside lab for a more accurate reading. Bill was started on Levothyroxine 25MCG. It takes about six weeks to see measurable results from the thyroid replacement therapy, so the wait begins.
Quoted from Wikipedia "Levothyroxine, also L-thyroxine, synthetic T4, or 3,5,3',5'-tetraiodo-L-thyronine, is a synthetic form of thyroxine (thyroid hormone), used as a hormone replacement for patients with thyroid problems".
The second blood test came back showing a level of 133. The normal high end of the range is 4.5. As the doctor said "This is an extreme case of hypothyoridism". The next step was to see an Endocrinologist locally to make sure everything else is OK. Dr. Go was very good and thorough in his physical examination. One side of the Thyroid gland is enlarged, so the doctor ordered an ultrasound of the Thyroid. The medication was changed to Levoxyl 100MCG and a blood test order was written for six weeks.
One cannot even imagine what Bill is going through. One day feeling great and then boom, knocked off your feet. Today he still does not have energy to do anything. He was on the Levothyroxine at 25MCG's for 15 days and now on the Levoxyl at 100MCG's for a week. I hope and pray that he will see some relief from this latest road bump real soon.
On a positive note, we did make it to the BMTinfonet.org conference "Celebrating a Second Chance at Life Symposium". The conference took place in Atlanta, GA this year. Our flight out of Orlando was delayed 2 1/2 hours due to mechanical problems with the plane. Sitting in the airport was more than Bill could handle with his current situation. If the plane did not board when it did we were at the point of going home and calling off the trip. I was very proud of Bill for making the trip and attending all the sessions on Saturday and Sunday. It was a very difficult and long trip for him, but he did it. We did learn a few things at the conference and we also met and spoke with other transplant survivors, some that were 20 and 30 years post transplant. One of the many things that we learned is that problems related to the transplant can be with you for a long time.
My favorite session was "ask the expert". Eight renowned physicians from the best Bone Marrow Transplant hospitals in the country were on the podium answering questions from the audience. Claudio Anasetti, MD who chairs the Department of Blood and Marrow Transplantation at Moffitt Cancer Center was one of the eight. Of course I had to ask a few questions and was very pleased with the responses. One question we had related to Sookie getting her immunizations. Bill cannot be around children that have recently been vaccinated with live virus'. Did that hold true for dogs that are recently vaccinated with live virus'. It turns out, since the virus' are ones that humans don't contract, it is OK for Sookie to get her shots and for Bill to be around her.
I attended a networking session for caregivers and found it interesting to hear what other caregivers had to say. Some of them were very candid about their feelings, enough said there. One women, whose daughter is a survivor, talked about mucositis and how her daughter did not get it. Although this is not proven, it is noteworthy. The women is a dental hygienist and had her daughter using prescription strength fluoride toothpaste before and during the transplant. She is convinced the prescription strength fluoride toothpaste prevented her daughter from getting mucositis.
In several of the sessions we learned that the pesticides (chemo) and drugs that are used pre and post transplant can wreck havoc on the thyroid, hence the current road bump.
I would like to introduce everyone to my wife in high school. (Yes we had a make believe family with kids and all). Kris and I have been friends for over 30 years and the friendship has been valued and rewarding. Kris, who lives just outside of Atlanta, was our driver, tour guide extraordinaire from the airport to the hotel and then a few short trips around Atlanta and then back to the airport on Sunday, and finally an all around GOOD FRIEND. We had a very nice diner with her and her mother. Kris, thank you for all your kindness and help!!!
On Thursday, September 15 we had our most recent visit to Moffitt. Everything went well with the appointments, all the levels look good from a transplant perspective, just need to wait the six weeks for the thyroid medicine to kick in. The two medications that Bill is taking for GVHD have been reduced to once a day, down from twice a day. (Entocort (budesonide) and Beclomethasone).
When we got home I reviewed the blood work for the last few months and noticed that the Platelet count has gone from 212 on June 30th down to 88 on September 15th. Although his level is still in the safe range, we need to understand what could be causing the drop. During the August visit the doctor mentioned the drop to 108, but was not overly concerned.
Day 313 and counting!!!!!
Thursday, August 4, 2011
It has been almost two month's since my last post. As always a lot has happened. Day by day we don't see a lot of changes, but when you look back over a month or longer you can see the journey. All in all Bill is doing well. He is making progress as time goes on.
The bladder problem is still the most annoying issue that Bill is dealing with at this point in the process. He has really been a trouper and has been very brave. The doctor still believes that this too shall pass.
Since we were only going to Moffitt once a month Bill decided to get his blood tested in Titusville so we could see where his levels were. Everything looked fairly good including his hemoglobin which was around 8.2
Towards the end of June, beginning of July Bill started to experience some symptoms that he should not have had. His skin was extremely dry and showed a slight redness. He was extremely fatigued and had stomach pain. He was experiencing nausea, his appetite disappeared and he lost about 12 pounds over a two week period. I called Moffitt and spoke with the doctors and they felt the symptoms that I was describing was similar to the dreaded GVHD - Graft vs. Host Disease. We got Bill in to see the local GI doctor and he was very helpful in coordinating efforts with Moffitt. The Dr. did blood work which came back good, including Bill's hemoglobin, which was 8.1. Looking for GVHD during an endoscopy is specialized work so two days later we were making an unexpected trip to Moffitt for an endoscopy and colonoscopy to take biopsies to confirm GVHD. The visual inspection during the procedure looked like GVHD and after the physical examination the doctor was pretty sure it was GVHD. Bill's blood work that day showed his hemoglobin at 7.5, and we all know what that means.......... two units of blood because it was below 8.0. When we left the clinic, Bill told the nurse he had lots of energy and felt like he had an oil change. He also thanked the person or people who donated the two units of blood he received. Bill doesn't know who they are, but he wanted to acknowlege everyone that has taken the time to donate blood to help people like himself. We got to the hospital at 8:30am and left to go home at 6:00pm, boy was it a long day. We left with prescriptions for medication to fight the GVHD, pending the results of the biopsies.
The next morning I dropped off the scripts at CVS on my way to work. CVS informed me that one of the drugs, beclomethozone, had to be purchased from a pharmacy that mixes solutions. The closest once was 45 minutes away from the house. I got to work and called Hobbs in Merritt Island and they took the script over the fax so they could have it ready before closing time at 8:00pm. A few hours later, Bill got a call from the pharmacy, letting him know that budesinide was not covered by insurance and would cost $740 for a 30 day supply. Bill is really great about being frugal with money and told the pharmacy not to fill the script until he spoke with me. Of course I told him we didn't have a choice, it was his life that we are dealing with. He called the pharmacy back and told them to fill it only to find out that they were out of stock and would not get it in until after the 4th of July week-end. The next day I started calling other pharmacies and found a Walgreens in town that had the drug, so I picked up the script and brought it to get filled. I waited in the store while they filled the script. They called Bill's name, I went up to the register to pay and the clerk said the cost was $2.50. Needless to say, I was in shock and could not believe it. The pharmists came over and told me that the generic was not covered, since it recently came out on the market, however the name brand Enticort was. Boy are we glad CVS was out of stock.
After a week of taking the two medications Bill's symptoms have started to subside and he was feeling much better. I took a trip to NY this past week-end to handle some business with my father's estate and Bill stayed home. Thursday night, after settling in at my sisters house Bill calls me to let me know the symptoms are starting to return. We talk again on Friday afternoon and symptoms are progressing so I call Moffitt and the was told to up the medication and give it about 5 days to see if it will work. If the med's don't work we will most probably need to change the treatment. Our next visit to Moffitt is scheduled for August 17, I will post my next update when we have some news.
Thursday, June 9, 2011
Post # 58 - Today is a special day!!!
Happy Birthday to Bill!!!!!
Today is Bill's birthday and a wonderful one it is. There were days while he was in the hospital where we had some concerns that we would never see another birthday. Thankfully that is all behind us. Today is day 212 post transplant.
I do apologize for the time between posts, I have wanted to update, but have been very busy with ........ things. Bill is doing well. He is down to monthly visits with the transplant doctor. His counts and bone marrow results are all moving in the right direction. Bill is still dealing with the bladder problem. He had a cystoscopy two weeks ago and we learned that he has Interstitial Cystitis. There is no real cure and only time will tell if the condition will improve.
Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms vary from case to case and even in the same individual. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate, a frequent need to urinate, or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties.
During the last visit with the Dr. he informed Bill his case was one of the most difficult he has handled. His immune system is still young and immature so precautions are still necessary. Food is still something that we are very careful with and Bill wears a mask when ever he is out of the house. Bill is driving again. He as been to the local store a few times and drove to a doctor appointment in town. Walking and even talking for an extended period of time is very tiring to Bill. He gets fatigued very quickly. All to be expected.
Other than that his weight is stable, he is doing well and feels good.
Thanks for following and sending your prayers, love and support.
Mike
Happy Birthday to Bill!!!!!
Today is Bill's birthday and a wonderful one it is. There were days while he was in the hospital where we had some concerns that we would never see another birthday. Thankfully that is all behind us. Today is day 212 post transplant.
I do apologize for the time between posts, I have wanted to update, but have been very busy with ........ things. Bill is doing well. He is down to monthly visits with the transplant doctor. His counts and bone marrow results are all moving in the right direction. Bill is still dealing with the bladder problem. He had a cystoscopy two weeks ago and we learned that he has Interstitial Cystitis. There is no real cure and only time will tell if the condition will improve.
Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms vary from case to case and even in the same individual. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate, a frequent need to urinate, or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties.
During the last visit with the Dr. he informed Bill his case was one of the most difficult he has handled. His immune system is still young and immature so precautions are still necessary. Food is still something that we are very careful with and Bill wears a mask when ever he is out of the house. Bill is driving again. He as been to the local store a few times and drove to a doctor appointment in town. Walking and even talking for an extended period of time is very tiring to Bill. He gets fatigued very quickly. All to be expected.
Other than that his weight is stable, he is doing well and feels good.
Thanks for following and sending your prayers, love and support.
Mike
Friday, April 1, 2011
Post # 57 - How are the kidney's doing? Monday March 21st Bill had blood work done locally to see how the kidney functions were doing. The Creatinine came back at 1.6, which is a big improvement from where it was a week ago. His hemoglobin was also better at 8.2. We tracked his fluid input and output the entire week and we were able to see that the output was more than the input. The swelling in the legs and feet were noticeable less. He was no longer retaining fluid. Wednesday March 23rd Bill had his weekly appointment with the transplant doctor. The blood work looked even better on Wednesday - Creatinine is 1.5. Based upon the tremendous improvement in the kidney function levels it was decided that a nephrology consults was not necessary. The doctor was right, the problem was being caused by the medication. By this appointment Bill had lost a few pounds and was down to 122. He continues to get the Jevity 1.2 Cal liquid nutrition each night via the ng tube. Bill continues to take additional water through the ng tube every day. The doctor felt that we could go three weeks to the next appointment since Bill made significant improvement in the kidney functions. He ordered blood work for the following two Wednesday's to be done locally, so the kidney function could be monitored. Since the tacrolimus has been stopped, there have been no signs of GVHD. Wednesday, March 30th blood work was done at Parrish Medical Center, our local hospital. Hemoglobin is up to 8.7, Platelets are 157, WBC is 3.6, Creatinine is down to 1.3 All of his blood work looks really good. Bill has continued to loss additional weight. He is now down to 119 pounds. In addition to the Jevity 1.2 cal each night via the ng tube, Bill is eating regular food through out the day. He is eating as much as he can, which is limited. His tongue is still showing mild effects from the fungus, which destroys his taste buds. We have tried everything from his favorite foods, to donuts, ice cream, pizza, cheeses, carnation instant breakfast, macaroni and cheese, tortellini, clam chowder, friend chicken sandwiches, carrot cake and many more. He eats what he can. Friday April fools day, I mean April 1st is day 143 post transplant. Another 40 days and we can talk with the Dr. about bring Tweedy home. We miss having him in the house with us. The week-end went well. Bill does not leave the house much. We did manage to get out to the store to food shop on Sunday evening. We like to go late in the evening so there won't be to many people in the store. Bill is maintaining a weight of 119. This Wednesday Bill has blood work at Parrish Medical Center and then our next appointment at Moffitt is on April 13th.
Sunday, March 20, 2011
Post #56 - Update on Bill's journey - Kidneys
With everything that is going on in the world (Japan, the Middle East, and in our own lives) we still have to take the time to see the beauty in the world. On my way home one night last week I took this picture from my car at the entrance to our community. It is not uncommon to see a rainbow in the sky, but to see two took my breath away.
Update on Bill, things have gotten worse with his kidneys. His Creatinine is now 2.9 which is three times the normal. The Dr. is concerned about this, since all the tests that he has performed has not provided the cause of the problem. The Ultrasound done last week does not show a change in the condition of the hydronephrosis in his right kidney, so a stent may not be the answer. We have an appointment this week on Wednesday (Dr. feels it can wait until then) with a bone marrow Nephrologist (Kidney specialist). The next step is to possibly have a kidney biopsy. Last Wednesday was a very difficult and emotionally draining day as we are now faced with the unknown again. We will repeat blood work on Monday (tomorrow) to monitor the creatinine level, if it should be higher we will need to get immediate attention. If you recall, the last time Bill’s creatinine was above 3.0 he started to have mental status changes and his systems were starting to shut down due to the toxin’s in his body not being processed by the kidneys and excreted. That is my main concern right now, I don’t want to go back to that dark place. Back then he was on a many more drugs and he had contrast for a CT that put his kidneys over the edge. The Dr. has reduced his medication to lighten the load on the kidneys, and discontinued Tacrolimus (the immunosuppressant drug) which is hard on the kidneys, so I am hopeful.
With everything that is going on in the world (Japan, the Middle East, and in our own lives) we still have to take the time to see the beauty in the world. On my way home one night last week I took this picture from my car at the entrance to our community. It is not uncommon to see a rainbow in the sky, but to see two took my breath away.
Update on Bill, things have gotten worse with his kidneys. His Creatinine is now 2.9 which is three times the normal. The Dr. is concerned about this, since all the tests that he has performed has not provided the cause of the problem. The Ultrasound done last week does not show a change in the condition of the hydronephrosis in his right kidney, so a stent may not be the answer. We have an appointment this week on Wednesday (Dr. feels it can wait until then) with a bone marrow Nephrologist (Kidney specialist). The next step is to possibly have a kidney biopsy. Last Wednesday was a very difficult and emotionally draining day as we are now faced with the unknown again. We will repeat blood work on Monday (tomorrow) to monitor the creatinine level, if it should be higher we will need to get immediate attention. If you recall, the last time Bill’s creatinine was above 3.0 he started to have mental status changes and his systems were starting to shut down due to the toxin’s in his body not being processed by the kidneys and excreted. That is my main concern right now, I don’t want to go back to that dark place. Back then he was on a many more drugs and he had contrast for a CT that put his kidneys over the edge. The Dr. has reduced his medication to lighten the load on the kidneys, and discontinued Tacrolimus (the immunosuppressant drug) which is hard on the kidneys, so I am hopeful.Stopping the Tacrolimus will allow his immune system to get stronger and fight the virus’ that Bill has been dealing with. Stopping the Tacrolimus also comes with an increased risk of getting graft vs. host disease (GVHD). Throughout the entire process, Bill only had a touch of GVHD in his stomach and it was very light. Clinically he did not get GVHD, so the Dr. is very optimistic that he will not get it now that the Tacrolimus has been stopped.
Since the kidneys functions are showing signs of failing, the Dr. wants Bill to increase is input of fluids each day. Therefore he will be on the ng tube for most of the day getting water when he is not getting the liquid food. He needs to get at least 3 liters of fluid a day (the equivalent of eight and a half 12oz cans of soda). I have created a log for him to track his input and output so we can share with the doctor. The log will also allow us to see if he is retaining more fluid. We are also taking his weight every day at the same time to see if he is retaining fluid. If (emphasis on IF) the kidney goes into failure Bill will need dialysis, the good news is it does not necessarily mean he will be on dialysis forever or need a transplant. There is always the chance that the kidneys will repair itself.
While at the clinic Wednesday Bill has visible signs of blood in his urine and then he excreted a blood clot. The increase in fluids should help prevent an increase of clots. So far through today we have not seen any signs of blood or clots.
Bill’s Hemoglobin is 8.0, which is the borderline for needing a red blood cell transfusion. We have to monitor his breathing and fatigue. If the breathing gets labored or the fatigue increases we will need to get his blood checked and most probably he will need a few units of blood.
The culture on his tongue came back positive for candida (yeast). Bill’s tongue is completely white and he has no taste. He is on an anti fungal, at a reduced dose to protect the kidneys, to clear it up the tongue.
The culture on the sore in his mouth came back negative for herpes, which is great news. The sore is starting to heal.
On a good note, Bill has maintained a weight of 126, and from a transplant perspective his counts are good with the exception of the lymphocytes. Stopping the tacrolimus should help the lymphocytes increase.
Yesterday Bill had a visit from Lue, Kelli, Margy and Mary Ann. We sat outside under the port for about 5 hours and had a nice relaxing time. On the way back from picking up some food for our guests I saw a gator in the retaining pond of the local cracker barrel.
A sign that spring is in the air and water.
Helpful, caring and compassionate technician's at the BMT clinic
Neisha
Maureen
Please continue to let Bill know that you are rooting for him and praying for him. Throughout all of this, Bill has continued to have a positive attitude.
Friday, March 11, 2011
Post #55 - So what happened during the doctor visit on Wednesday?
We made the two hour trip to Moffitt and went to the BMT clinic for blood work. Shortly after we met with the PA and the physician. We discussed all the issues that Bill has been dealing with and got many answers.
A culture of the sores in his mouth were done to determine if the Herpes (HSV) was back. We should have those results in a few days. A culture was also done of his tongue too, it looks like Bill may have a fungal infection there. The doctor was absolutely positive that the fevers that Bill has been having is a direct result of the sores in his mouth. Know that was a big relief, as I was concerned something more serious could have been brewing. Bill has not eaten anything since last Saturday, other than the feeding through the ng tube. On Wednesday his weight was 129, which is great and shows that he is maintaining and not losing.
The Dr. took one look at the ng tube that Bill had in from last Wednesday and said it was the wrong tube and need to be change. The nurse that does the procedure came to the clinic and put in a new ng tube, the original one he had.
The last issue to deal with was the swelling in his legs and feet. The blood work showed that Bills creatinine was 2.0, which is double what Bills base line is and should be. That is the reason for his swelling, his kidneys are not functioning properly. This is the biggest issue that needs to be dealt with. An ultra sound of the kidneys was done and a plan of action will be created from the results. Urine was also obtained. The Dr. thinks the issue may be the same one that we have been watching, which means the solution would be to have a stent put in the tube between his kidney and bladder. We will know early next week.
The visit on Wednesday lasted seven hours in all between tests and appointments, a long day and then a two hour ride back home to Titusville.
Now that we have answers we are both feeling a lot better. Alright, I am feeling a lot better. Being a caregiver and making sure the patient has everything they need to get better puts your guard up. When something changes or matches the symptoms that they tell you to watch for, the tendency is to worry. I did a lot of worrying. I feel much better and can now put my energy to working on what I can which is to help Bill get better.
Due to the issues that have popped up (another bump in the road as the Dr. puts it) we are back on weekly visits to Moffit BMT clinic, so our next appointment is on Wednesday.
We made the two hour trip to Moffitt and went to the BMT clinic for blood work. Shortly after we met with the PA and the physician. We discussed all the issues that Bill has been dealing with and got many answers.
A culture of the sores in his mouth were done to determine if the Herpes (HSV) was back. We should have those results in a few days. A culture was also done of his tongue too, it looks like Bill may have a fungal infection there. The doctor was absolutely positive that the fevers that Bill has been having is a direct result of the sores in his mouth. Know that was a big relief, as I was concerned something more serious could have been brewing. Bill has not eaten anything since last Saturday, other than the feeding through the ng tube. On Wednesday his weight was 129, which is great and shows that he is maintaining and not losing.
The Dr. took one look at the ng tube that Bill had in from last Wednesday and said it was the wrong tube and need to be change. The nurse that does the procedure came to the clinic and put in a new ng tube, the original one he had.
The last issue to deal with was the swelling in his legs and feet. The blood work showed that Bills creatinine was 2.0, which is double what Bills base line is and should be. That is the reason for his swelling, his kidneys are not functioning properly. This is the biggest issue that needs to be dealt with. An ultra sound of the kidneys was done and a plan of action will be created from the results. Urine was also obtained. The Dr. thinks the issue may be the same one that we have been watching, which means the solution would be to have a stent put in the tube between his kidney and bladder. We will know early next week.
The visit on Wednesday lasted seven hours in all between tests and appointments, a long day and then a two hour ride back home to Titusville.
Now that we have answers we are both feeling a lot better. Alright, I am feeling a lot better. Being a caregiver and making sure the patient has everything they need to get better puts your guard up. When something changes or matches the symptoms that they tell you to watch for, the tendency is to worry. I did a lot of worrying. I feel much better and can now put my energy to working on what I can which is to help Bill get better.
Due to the issues that have popped up (another bump in the road as the Dr. puts it) we are back on weekly visits to Moffit BMT clinic, so our next appointment is on Wednesday.
Tuesday, March 8, 2011
Post #54 - Day 97 - 119 Home Sweet Home
The first week of being home went well for us. Bill continued to get the ng feeding each night. On Wednesday February 16 (Day 99) we made our first weekly visit to Moffitt. We have decided not to spend the night, therefore we drive two hours each way on the days we have the appointment. Since Bill was not having any relief from the Bladder issue, the doctor order Cidofovir IV to treat the virus. The treatment requires 1/2 a liter of saline pre treatment, Cidofovir, and 1/2 a liter of saline post treatment. The pre and post treatment is done due to the effect the drug has on the kidneys. Similar to the process we did at home for the Foscarnet. The treatment is done once a week for about four weeks. Bill's blood was taken and the pre treatment saline was started. About a half an hour into the pre treatment, the nurse came in and informed us that Bill's Creatinine was to high and administering the treatment could do more harm than good. The pre treatment was finished and we waited for the doctors visit. The bone marrow biopsy results were not available at this appointment. The Chimersim study did come back and it showed that Bill had 77% donor cells. The doctor indicated that he expected the results to be over 90% at this point in the process, but due to the various set backs Bill has had with the virus' he was not concerned.
Week two at home went well for us. Bill had his weekly appointment with the doctor at Moffitt on Wednesday February 23. Prior to the appointment, Bill was scheduled for a simulated driving test which is performed on a computer. The purpose of the test is to measure response/reaction time to tasks. Bill achieved a marginal fail on the test (just missed passing), which means he has not been released to drive a car. It is important that Bill not drive until he gets released by the doctor as he would not be covered by insurance if something were to happen. From the test we went up to the clinic for the weekly blood test. Once again, since Bill is still suffering with the bladder, an attempt was made to give him Cidofovir. His creatinine level was to high to administer the cidofovir so it was not given. The doctor prescribed a drug called Leflunomide 20mg tablet taken once a day to treat the BK virus. It took a week to get the prescription approved so Bill did not start on it until March 2. The visit with the doctor went well. He decided that since everything else was going well, our visits would be changed to every other week and the ng tube feeding would continue until the next appointment. At that time, March 9, he would assess the need to continue.
Thursday February 24 Bill and I watched the final launch of Space shuttle Discovery. Bill watched on TV, 10 seconds before lift off, I went outside and watched it from our front yard. We can never get tired of watching the beauty of a launch. Titusville was a zoo for several hours after the launch due to the increased number of people that came to catch one of the three final launches. Two more to go before the shuttle program is retired.
The third week home did not go as well as the first two. On Tuesday, March 1, we discovered that the ng tube was clogged and nothing we did opened the tube. We tried everything we could think of, including coke. We gave up at 2:00am in the morning and agreed that we would need to go to the emergency room the next morning. On Wednesday, March 2 we visited Parrish Medical Center, our local hospital (where I work) and they tried everything they could to clear the tube. The doctor said "the tube must come out and be replaced". Bill was not happy, I was not happy either, but we didn't want to lose the momentum Bill achieved with his weight so the tube was replaced.
Friday March 4, Bill noticed that his feet were swollen and he was getting a new sore in his mouth. Since it was new and small we decided to monitor the sore. On Saturday it grew a little more and the feet were still swollen. On Sunday around 11:00am, Bill developed a fever of 100.6 (the magic number for an emergency room visit is 100.5). Since his temperature had been great up until now, he wanted to wait a few hours to see if it would come down. Around 2:00pm he was down to 100.4 and just before bed time he was down to 99.7. Although we did not go to the emergency room I did call the BMT clinic to let them know what was going on to get their advice. They said if the fever continues, which it didn't, Bill would need to get to an emergency room for evaluation.
Monday, March 7, the sore in Bill's mouth grew to the size of a quarter and was causing to much pain for him to eat anything. At around 1:30 in the afternoon, the tape let go on the ng tube and it worked its way about half the length out of his nose. The trouper that Bill is, he pushed the tube back down and re taped it it to his face. When I found out, I once again called the BMT clinic and let them know what was going on to make sure there was nothing that we needed to do. Due to the inability to eat, Bill has started taking the food via the ng tube during the day time as well as the treatment he was getting at night. The swelling in his feet have come down a little.
Tuesday, today March 8, Bill is feeling fatigued, the sore is very painful and his lip is now swollen. We are both happy that the Moffitt appointment is tomorrow so we can see the doctor and figure out what is going on with his condition. As soon as we know anything I will post an updated.
The first week of being home went well for us. Bill continued to get the ng feeding each night. On Wednesday February 16 (Day 99) we made our first weekly visit to Moffitt. We have decided not to spend the night, therefore we drive two hours each way on the days we have the appointment. Since Bill was not having any relief from the Bladder issue, the doctor order Cidofovir IV to treat the virus. The treatment requires 1/2 a liter of saline pre treatment, Cidofovir, and 1/2 a liter of saline post treatment. The pre and post treatment is done due to the effect the drug has on the kidneys. Similar to the process we did at home for the Foscarnet. The treatment is done once a week for about four weeks. Bill's blood was taken and the pre treatment saline was started. About a half an hour into the pre treatment, the nurse came in and informed us that Bill's Creatinine was to high and administering the treatment could do more harm than good. The pre treatment was finished and we waited for the doctors visit. The bone marrow biopsy results were not available at this appointment. The Chimersim study did come back and it showed that Bill had 77% donor cells. The doctor indicated that he expected the results to be over 90% at this point in the process, but due to the various set backs Bill has had with the virus' he was not concerned.
Week two at home went well for us. Bill had his weekly appointment with the doctor at Moffitt on Wednesday February 23. Prior to the appointment, Bill was scheduled for a simulated driving test which is performed on a computer. The purpose of the test is to measure response/reaction time to tasks. Bill achieved a marginal fail on the test (just missed passing), which means he has not been released to drive a car. It is important that Bill not drive until he gets released by the doctor as he would not be covered by insurance if something were to happen. From the test we went up to the clinic for the weekly blood test. Once again, since Bill is still suffering with the bladder, an attempt was made to give him Cidofovir. His creatinine level was to high to administer the cidofovir so it was not given. The doctor prescribed a drug called Leflunomide 20mg tablet taken once a day to treat the BK virus. It took a week to get the prescription approved so Bill did not start on it until March 2. The visit with the doctor went well. He decided that since everything else was going well, our visits would be changed to every other week and the ng tube feeding would continue until the next appointment. At that time, March 9, he would assess the need to continue.
Thursday February 24 Bill and I watched the final launch of Space shuttle Discovery. Bill watched on TV, 10 seconds before lift off, I went outside and watched it from our front yard. We can never get tired of watching the beauty of a launch. Titusville was a zoo for several hours after the launch due to the increased number of people that came to catch one of the three final launches. Two more to go before the shuttle program is retired.
The third week home did not go as well as the first two. On Tuesday, March 1, we discovered that the ng tube was clogged and nothing we did opened the tube. We tried everything we could think of, including coke. We gave up at 2:00am in the morning and agreed that we would need to go to the emergency room the next morning. On Wednesday, March 2 we visited Parrish Medical Center, our local hospital (where I work) and they tried everything they could to clear the tube. The doctor said "the tube must come out and be replaced". Bill was not happy, I was not happy either, but we didn't want to lose the momentum Bill achieved with his weight so the tube was replaced.
Friday March 4, Bill noticed that his feet were swollen and he was getting a new sore in his mouth. Since it was new and small we decided to monitor the sore. On Saturday it grew a little more and the feet were still swollen. On Sunday around 11:00am, Bill developed a fever of 100.6 (the magic number for an emergency room visit is 100.5). Since his temperature had been great up until now, he wanted to wait a few hours to see if it would come down. Around 2:00pm he was down to 100.4 and just before bed time he was down to 99.7. Although we did not go to the emergency room I did call the BMT clinic to let them know what was going on to get their advice. They said if the fever continues, which it didn't, Bill would need to get to an emergency room for evaluation.
Monday, March 7, the sore in Bill's mouth grew to the size of a quarter and was causing to much pain for him to eat anything. At around 1:30 in the afternoon, the tape let go on the ng tube and it worked its way about half the length out of his nose. The trouper that Bill is, he pushed the tube back down and re taped it it to his face. When I found out, I once again called the BMT clinic and let them know what was going on to make sure there was nothing that we needed to do. Due to the inability to eat, Bill has started taking the food via the ng tube during the day time as well as the treatment he was getting at night. The swelling in his feet have come down a little.
Tuesday, today March 8, Bill is feeling fatigued, the sore is very painful and his lip is now swollen. We are both happy that the Moffitt appointment is tomorrow so we can see the doctor and figure out what is going on with his condition. As soon as we know anything I will post an updated.
Sunday, February 13, 2011
Post #53 - Day 79 through 96
There is a light at the end of the tunnel
Day 79 - Thursday, January 27, 2011
This was a glorious day because we did not need to go to the clinic. I was able to work the entire day without having to pack and unpack several times. Walgreens home infusion delivered a weeks work of Foscarnet and Saline with Magnesium and several weeks of the NG tube feeding solution. Bill's temperate was in the normal range through out the day. We received a call that the triple lumen catheter removal was scheduled for Wednesday, February 2 at 1:30pm.
Started the Foscarnet routine at 8:00pm (remove dose from fridge 2 hours prior) and finished the three IV's around 11:30pm. Since the dose was increased the administration takes about half an hour longer. Friday I will be starting the IV around 7:30pm. Started the NG tube feeding around 10:30pm, which will finish around 8:00am. Bladder and throat are still giving Bill trouble
Day 80 - Friday, January 28, 2011
WBC 4.73 / ANC 3.44 / Creatinine 1.10 / BUN 29.0 / Hemoglobin 9.6 / Platelets 177 / Magnesium ---
Today we had a trip to the BMT clinic for blood work and then down to Radiology for an ultrasound of the kidneys. Finished both and then went home for the day. Started the Foscarnet routine at 7:30pm and and NG tube feeding around 10:30pm.
Day 81 - Saturday, January 29, 2011
Nice day at home, did not have any appointments anywhere. Did the Foscarnet and NG tube feeding routine.
Day 82 - Sunday, January 30, 2011
WBC 5.24 / ANC 4.03 / Creatinine 1.00 / BUN 33.0 / Hemoglobin 9.2 / Platelets 179 / Magnesium ---
The alarm for the NG tube feeding pump went off around 8:00am this morning like is does every morning. I unhooked and went to flush the tube with the water and I could not get the syringe to move. I pushed a little harder and harder until the other opening released and the saline shot across the room and all over Bill, he was not happy. I was in a panic because I thought I broke the line and Bill was going to need to have it re-inserted. Since we were going to the clinic at 10:30am for blood work we figured we would just wait until them to discuss it with the professional. Robert was working today so we asked to have him take a look at the NG tube. I explained what happened and what I did and Robert gave a smirk and asked if they told me to flush the line with anything else other than water. My response was no. Now my mind starts to race and I am thinking there is a Drano like substance that I should have been given to use on a regular basis and I did not remember. Well, did you ever read the jokes about the 101 uses for Coke? Yes, Coke the soda. Robert got a can of coke and work for a few minutes and, presto the line was cleared. Everything was good, I learned something new today. After we left the BMT clinic we made a stop at the store for some diet coke. Robert also told us that we could use the NG tube to give Bill fluids through out the day since he was still having trouble swallowing. I started with diet coke and learned that cold was very uncomfortable and then only used liquids that were at room temperature.
The evening routine of Foscarnet was started at 5:00pm so I could finish by 8:30pm and hit the road. The ng tube feeding was started around 8:30pm, I slowed the rate down so it would not finish before 8:00am. Bill's son William came to stay with Bill so I could go home to Titusville to go to work and attend some meetings.
Day 83 - Monday, January 31, 2011
Today the only appointment that Bill has was PT rehab at noon. Other than that the day went well, William un-hooked the NG tube with no problems and flushed the line.
I got home from Titusville around 7:00pm to start the Foscarnet and NG tube routine and William went home to Deltona.
Day 84 - Tuesday, February 1, 2011
Another day at the apartment with no appointments. Bill is still having trouble with the throat and bladder. Bill is now starting to show interest in watching TV, he is addicted to HGTV house virgins and international as well as the cooking channel. Today we tried carnation instant breakfast in the tube. Walgreens home infusion delivered the next weeks dose of Foscarnet and Saline with Magnesium.
Started the foscarnet routine at 7:30pm and the NG tube feeding at 10:30pm
Day 85 - Wednesday, February 2, 2011
WBC 5.79 / ANC 4.54 / Creatinine 1.0 / BUN 39.0 / Hemoglobin 9.2 / Platelets 187 / magnesium 1.8
Today is the day that the central line (triple lumen catheter) is being removed. Bill was not happy because they only use a local anesthetic. Needless to say the procedure went well, Bill felt nothing. The Dr. took her time and slowly removed the line.
We then went to the clinic for blood work and they accessed the power port to draw blood and then left the access line in so I could use it at home for the Foscarnet routine. The visit with Dr. Ayala went well. Dr. Ayala reduced the number of visits for blood work to once a week, just before our appointment with him.
Now that going home is getting closer we asked about Tweedy and when he would be able to come home and live with us. The doctor said it would be at least another three months before he would consider it.
Our Friend Max and Shirley came to Florida for a month from wintery cold Buffalo, NY. As they were leaving for Florida, Max developed a cough and was feeling fatigued. After they arrived in Florida he developed a fever and ended up in the emergency room for some testing to check for infections. Everything came back normal. As we skyped with Max and Shirley, every time Max spoke he started to cough. We kept them up to date with our progress and were now concerned with his condition. What this has taught us is that even after a year and several months post transplant Bill will need to keep his guard up and take all the same precautions we are taking now. Being out of the woods is something that will be a long time in coming.
Day 86 - Thursday, February 3, 2011
PT at noon and then the Foscarnet and NG tube feeding at night.
Day 87 - Friday, February 4, 2011
2:30pm appointment with the GI doctor to discuss the results of the ultra sound of the kidneys. The report reads "There is persistent moderate right-sided hydronephrosis, similar to previous exam dated 12/8/10" The doctor explained that the kidney looks the same, it didn't get any better, but it also did not get worse, which is a good sign. We are on a wait and watch schedule for the next three months. The ultra sound will be repeated in May 2011.
The GI doctor stopped the Pyridium and oxybutynin because Bill told her it didn't seem to be helping any. They were replaced with Hyoscyamine 0.125mg every four hours and Vesicare 5.0mg once a day.
Did the foscarnet and NG tube feeding routine.
Day 88 - Saturday, February 5, 2011
Nice day at the apartment, did the Foscarnet and NG tube feeding routine.
Day 89 - Sunday, February 6, 2011
Another nice day. Bill is starting to feel a little relief in his throat. We have been here before, so we didn't get excited as it would need to stay that way and continue to get better for several days before we would say it is better.
Started the Foscarnet and NG tube feeding early as I was going to Titusville again to attend several meetings. Bill's sister Margy came to relieve me for Monday. I only gave Bill half the dose of the NG tube feeding because his bone marrow biopsy was the next day and he was not to have anything to eat past midnight.
Day 90 - Monday, February 7, 2011
WBC 4.00 / ANC 3.4 / Creatinine --- / BUN --- / Hemoglobin 8.5 / Platelets 170 / Magnesium ---
Today was a long day for Bill. The bone marrow biopsy was scheduled for 1:00pm, but didn't start until around 3:00pm He had nothing to eat since midnight the night before.
I returned around 7:15pm and started the Foscarnet and NG tube feeding routine. Margy left to return home to Deltona.
Day 91 - Tuesday, February 8, 2011
No appointments today, did the Foscarnet and NG tube routine.
Day 92 - Wednesday, February 9, 2011
PT rehab at noon. No other appointments today.
Today is the last dose of Foscarnet as Bill will have reached the therapeutic level. The doctor will examine Bill on Thursday and determine if more Foscarnet would be needed.
Day 93 - Thursday, February 10, 2011
WBC 3.81 / ANC 2.87 / Creatinine 1.2 / BUN 30.0 / Hemoglobin 8.1 / Platelets 167 / Magnesium 2.1
Today is a big day for Bill. In addition to the PFT - Pulmonary Function test, the topic of discussion will be - when will we be able to go home.
The PFT went well. one of the levels were lower than the baseline obtain prior to the transplant. The technician indicated that this was probably due to the Hemoglogin being lower now than three months ago.
Blood work has been trending down the last few tests. Hemoglobin is at 8.1, if it reaches 8.0 or below Bill will require a transfusion of red blood cells. We discussed Bill's throat which has continued to improve so the Dr. did not continue Foscarnet treatment. Instead Bill was put back on Acyclovir 800mg, 1 tablet twice a day as a precaution. Since Bill has not had any signs of GVHD his tacrolimus dose was decreased to 1.5mg twice a day We discussed Bill's bladder and the frequent urination and burning. The Dr. agreed that a BK virus level was needed and some additional blood work. If the results were not any better than they were in December he was going to treat the BK virus with Cidofovir IV once a week for four weeks. When Bill was in the hospital he received one dose of Cidofovir. Since it was around the time his kidneys were failing the treatment was discontinued.
Best news of the day, the doctor told us we could go home. Since we were down to one day a week to visit the BMT for blood work and to visit with him, he felt we could spend the week at home instead of in the apartment. He will continue to see Bill once a week to monitor his throat and the bladder/ BK virus issues.
After the appointment Bill returned back to the BMT clinic for his first two baby shot vaccinations. Today Bill received the following:
-Pneumococcal conjugate vaccine (Prevnar) 0.5ml intramuscular (IM)
-Influenza virus vaccine 0.5ml IM
The next round of vaccinations are scheduled for May 2011:
-Pneumococcal conjugate vaccine 0.5ml IM
-Inactivated Polio Virus (IPOL) 0.5ml IM or Subcutaneously (subQ)
-Hepatitis B vaccine (Engerix B) 1ml IM
-Diptheria/Tetanus/acellular pertussis (DTaP) 0.5ml IM
-Haemophilums Influenza type B (HibTITER, Hib Conjugate) 0.5ml IM
More shots in Nov 2011, May 2012 and Nov 2012
Did the NG tube feeding routine and started to get things organized for packing to go home.
Day 94 - Friday, February 11, 2011 - We are going home
Work up and did a few things for work and then signed off for the the day and took a vacation day to pack. packing took most of the morning. I took a break and ran a few errands, picked up meds and then returned for lunch. After lunch (2pm) I started to pack the car. It took me about an hour and a half to get everything into the car. I had the most trouble getting the IV poll into the car since it could not be taken apart. I packed every crease and crevice of the car, from the floor to the roof, front to back. I left a small space for Bill to sit in the back seat. I didn't think to take a picture, but a picture would have been worth a thousand words. After packing the car and dropping off the garbage I took a break before we left for home. We hit the road at 5:30pm and did have traffic for the first 20 minutes of the trip. After the traffic let up it was clear sailing to Titusville. We got home around 7:45pm and I proceeded to unload the car.
It was so good to be home, but especially with Bill. I could see a change in him just by being in his home. We ate some dinner, started the NG tube feeding routine and then went to bed in our beds.
Day 95 - Saturday, February 12, 2011 - Happy Birthday Gary
Today was an entire day of unpacking and putting everything away. Our neighbor, Mae dropped off the mail and the keys to the mail box. It was a learning experience to be back home. We had to search for things we could not remember where we stored them.
It was good to be home. Started the NG tube feeding routine
Day 96 - Sunday, February 13, 2011
Another day of unpacking, setting up the computers and paying bills. Bill took a walk and when we returned he was very tired and had to take a nap. He may have pushed a little to hard.
Tomorrow will be the first day since Nov 2, that Bill will be home alone. I am only 15 minutes away and we have friends, in the community where we live, that can come over to help if Bill needs it.
Now that we are home, I will be updating the blog as things happen and will not be reporting day by day. It is good to be home!!!
Our next visit to Tampa, BMT clinic is Wednesday, February 16, 2011. We will be going back to Tampa every Wednesday for the next four to eight weeks.
Thanks for all your support during our journey, we still have a long way to go, yet we have come so far.
There is a light at the end of the tunnel
Day 79 - Thursday, January 27, 2011
This was a glorious day because we did not need to go to the clinic. I was able to work the entire day without having to pack and unpack several times. Walgreens home infusion delivered a weeks work of Foscarnet and Saline with Magnesium and several weeks of the NG tube feeding solution. Bill's temperate was in the normal range through out the day. We received a call that the triple lumen catheter removal was scheduled for Wednesday, February 2 at 1:30pm.
Started the Foscarnet routine at 8:00pm (remove dose from fridge 2 hours prior) and finished the three IV's around 11:30pm. Since the dose was increased the administration takes about half an hour longer. Friday I will be starting the IV around 7:30pm. Started the NG tube feeding around 10:30pm, which will finish around 8:00am. Bladder and throat are still giving Bill trouble
Day 80 - Friday, January 28, 2011
WBC 4.73 / ANC 3.44 / Creatinine 1.10 / BUN 29.0 / Hemoglobin 9.6 / Platelets 177 / Magnesium ---
Today we had a trip to the BMT clinic for blood work and then down to Radiology for an ultrasound of the kidneys. Finished both and then went home for the day. Started the Foscarnet routine at 7:30pm and and NG tube feeding around 10:30pm.
Day 81 - Saturday, January 29, 2011
Nice day at home, did not have any appointments anywhere. Did the Foscarnet and NG tube feeding routine.
Day 82 - Sunday, January 30, 2011
WBC 5.24 / ANC 4.03 / Creatinine 1.00 / BUN 33.0 / Hemoglobin 9.2 / Platelets 179 / Magnesium ---
The alarm for the NG tube feeding pump went off around 8:00am this morning like is does every morning. I unhooked and went to flush the tube with the water and I could not get the syringe to move. I pushed a little harder and harder until the other opening released and the saline shot across the room and all over Bill, he was not happy. I was in a panic because I thought I broke the line and Bill was going to need to have it re-inserted. Since we were going to the clinic at 10:30am for blood work we figured we would just wait until them to discuss it with the professional. Robert was working today so we asked to have him take a look at the NG tube. I explained what happened and what I did and Robert gave a smirk and asked if they told me to flush the line with anything else other than water. My response was no. Now my mind starts to race and I am thinking there is a Drano like substance that I should have been given to use on a regular basis and I did not remember. Well, did you ever read the jokes about the 101 uses for Coke? Yes, Coke the soda. Robert got a can of coke and work for a few minutes and, presto the line was cleared. Everything was good, I learned something new today. After we left the BMT clinic we made a stop at the store for some diet coke. Robert also told us that we could use the NG tube to give Bill fluids through out the day since he was still having trouble swallowing. I started with diet coke and learned that cold was very uncomfortable and then only used liquids that were at room temperature.
The evening routine of Foscarnet was started at 5:00pm so I could finish by 8:30pm and hit the road. The ng tube feeding was started around 8:30pm, I slowed the rate down so it would not finish before 8:00am. Bill's son William came to stay with Bill so I could go home to Titusville to go to work and attend some meetings.
Day 83 - Monday, January 31, 2011
Today the only appointment that Bill has was PT rehab at noon. Other than that the day went well, William un-hooked the NG tube with no problems and flushed the line.
I got home from Titusville around 7:00pm to start the Foscarnet and NG tube routine and William went home to Deltona.
Day 84 - Tuesday, February 1, 2011
Another day at the apartment with no appointments. Bill is still having trouble with the throat and bladder. Bill is now starting to show interest in watching TV, he is addicted to HGTV house virgins and international as well as the cooking channel. Today we tried carnation instant breakfast in the tube. Walgreens home infusion delivered the next weeks dose of Foscarnet and Saline with Magnesium.
Started the foscarnet routine at 7:30pm and the NG tube feeding at 10:30pm
Day 85 - Wednesday, February 2, 2011
WBC 5.79 / ANC 4.54 / Creatinine 1.0 / BUN 39.0 / Hemoglobin 9.2 / Platelets 187 / magnesium 1.8
Today is the day that the central line (triple lumen catheter) is being removed. Bill was not happy because they only use a local anesthetic. Needless to say the procedure went well, Bill felt nothing. The Dr. took her time and slowly removed the line.
We then went to the clinic for blood work and they accessed the power port to draw blood and then left the access line in so I could use it at home for the Foscarnet routine. The visit with Dr. Ayala went well. Dr. Ayala reduced the number of visits for blood work to once a week, just before our appointment with him.
Now that going home is getting closer we asked about Tweedy and when he would be able to come home and live with us. The doctor said it would be at least another three months before he would consider it.
Our Friend Max and Shirley came to Florida for a month from wintery cold Buffalo, NY. As they were leaving for Florida, Max developed a cough and was feeling fatigued. After they arrived in Florida he developed a fever and ended up in the emergency room for some testing to check for infections. Everything came back normal. As we skyped with Max and Shirley, every time Max spoke he started to cough. We kept them up to date with our progress and were now concerned with his condition. What this has taught us is that even after a year and several months post transplant Bill will need to keep his guard up and take all the same precautions we are taking now. Being out of the woods is something that will be a long time in coming.
Day 86 - Thursday, February 3, 2011
PT at noon and then the Foscarnet and NG tube feeding at night.
Day 87 - Friday, February 4, 2011
2:30pm appointment with the GI doctor to discuss the results of the ultra sound of the kidneys. The report reads "There is persistent moderate right-sided hydronephrosis, similar to previous exam dated 12/8/10" The doctor explained that the kidney looks the same, it didn't get any better, but it also did not get worse, which is a good sign. We are on a wait and watch schedule for the next three months. The ultra sound will be repeated in May 2011.
The GI doctor stopped the Pyridium and oxybutynin because Bill told her it didn't seem to be helping any. They were replaced with Hyoscyamine 0.125mg every four hours and Vesicare 5.0mg once a day.
Did the foscarnet and NG tube feeding routine.
Day 88 - Saturday, February 5, 2011
Nice day at the apartment, did the Foscarnet and NG tube feeding routine.
Day 89 - Sunday, February 6, 2011
Another nice day. Bill is starting to feel a little relief in his throat. We have been here before, so we didn't get excited as it would need to stay that way and continue to get better for several days before we would say it is better.
Started the Foscarnet and NG tube feeding early as I was going to Titusville again to attend several meetings. Bill's sister Margy came to relieve me for Monday. I only gave Bill half the dose of the NG tube feeding because his bone marrow biopsy was the next day and he was not to have anything to eat past midnight.
Day 90 - Monday, February 7, 2011
WBC 4.00 / ANC 3.4 / Creatinine --- / BUN --- / Hemoglobin 8.5 / Platelets 170 / Magnesium ---
Today was a long day for Bill. The bone marrow biopsy was scheduled for 1:00pm, but didn't start until around 3:00pm He had nothing to eat since midnight the night before.
I returned around 7:15pm and started the Foscarnet and NG tube feeding routine. Margy left to return home to Deltona.
Day 91 - Tuesday, February 8, 2011
No appointments today, did the Foscarnet and NG tube routine.
Day 92 - Wednesday, February 9, 2011
PT rehab at noon. No other appointments today.
Today is the last dose of Foscarnet as Bill will have reached the therapeutic level. The doctor will examine Bill on Thursday and determine if more Foscarnet would be needed.
Day 93 - Thursday, February 10, 2011
WBC 3.81 / ANC 2.87 / Creatinine 1.2 / BUN 30.0 / Hemoglobin 8.1 / Platelets 167 / Magnesium 2.1
Today is a big day for Bill. In addition to the PFT - Pulmonary Function test, the topic of discussion will be - when will we be able to go home.
The PFT went well. one of the levels were lower than the baseline obtain prior to the transplant. The technician indicated that this was probably due to the Hemoglogin being lower now than three months ago.
Blood work has been trending down the last few tests. Hemoglobin is at 8.1, if it reaches 8.0 or below Bill will require a transfusion of red blood cells. We discussed Bill's throat which has continued to improve so the Dr. did not continue Foscarnet treatment. Instead Bill was put back on Acyclovir 800mg, 1 tablet twice a day as a precaution. Since Bill has not had any signs of GVHD his tacrolimus dose was decreased to 1.5mg twice a day We discussed Bill's bladder and the frequent urination and burning. The Dr. agreed that a BK virus level was needed and some additional blood work. If the results were not any better than they were in December he was going to treat the BK virus with Cidofovir IV once a week for four weeks. When Bill was in the hospital he received one dose of Cidofovir. Since it was around the time his kidneys were failing the treatment was discontinued.
Best news of the day, the doctor told us we could go home. Since we were down to one day a week to visit the BMT for blood work and to visit with him, he felt we could spend the week at home instead of in the apartment. He will continue to see Bill once a week to monitor his throat and the bladder/ BK virus issues.
After the appointment Bill returned back to the BMT clinic for his first two baby shot vaccinations. Today Bill received the following:
-Pneumococcal conjugate vaccine (Prevnar) 0.5ml intramuscular (IM)
-Influenza virus vaccine 0.5ml IM
The next round of vaccinations are scheduled for May 2011:
-Pneumococcal conjugate vaccine 0.5ml IM
-Inactivated Polio Virus (IPOL) 0.5ml IM or Subcutaneously (subQ)
-Hepatitis B vaccine (Engerix B) 1ml IM
-Diptheria/Tetanus/acellular pertussis (DTaP) 0.5ml IM
-Haemophilums Influenza type B (HibTITER, Hib Conjugate) 0.5ml IM
More shots in Nov 2011, May 2012 and Nov 2012
Did the NG tube feeding routine and started to get things organized for packing to go home.
Day 94 - Friday, February 11, 2011 - We are going home
Work up and did a few things for work and then signed off for the the day and took a vacation day to pack. packing took most of the morning. I took a break and ran a few errands, picked up meds and then returned for lunch. After lunch (2pm) I started to pack the car. It took me about an hour and a half to get everything into the car. I had the most trouble getting the IV poll into the car since it could not be taken apart. I packed every crease and crevice of the car, from the floor to the roof, front to back. I left a small space for Bill to sit in the back seat. I didn't think to take a picture, but a picture would have been worth a thousand words. After packing the car and dropping off the garbage I took a break before we left for home. We hit the road at 5:30pm and did have traffic for the first 20 minutes of the trip. After the traffic let up it was clear sailing to Titusville. We got home around 7:45pm and I proceeded to unload the car.
It was so good to be home, but especially with Bill. I could see a change in him just by being in his home. We ate some dinner, started the NG tube feeding routine and then went to bed in our beds.
Day 95 - Saturday, February 12, 2011 - Happy Birthday Gary
Today was an entire day of unpacking and putting everything away. Our neighbor, Mae dropped off the mail and the keys to the mail box. It was a learning experience to be back home. We had to search for things we could not remember where we stored them.
It was good to be home. Started the NG tube feeding routine
Day 96 - Sunday, February 13, 2011
Another day of unpacking, setting up the computers and paying bills. Bill took a walk and when we returned he was very tired and had to take a nap. He may have pushed a little to hard.
Tomorrow will be the first day since Nov 2, that Bill will be home alone. I am only 15 minutes away and we have friends, in the community where we live, that can come over to help if Bill needs it.
Now that we are home, I will be updating the blog as things happen and will not be reporting day by day. It is good to be home!!!
Our next visit to Tampa, BMT clinic is Wednesday, February 16, 2011. We will be going back to Tampa every Wednesday for the next four to eight weeks.
Thanks for all your support during our journey, we still have a long way to go, yet we have come so far.
Wednesday, January 26, 2011
Post #52 - Day 72 through Day 78
Day 72 - Thursday, January 20, 2011
WBC 4.05 / ANC 2.99 / Creatinine 0.9 / BUN 23 / Hemoglobin 10.1 / Platelets 137 / Magnesium 2.1
First thing in the morning, as soon as the ng tube feeding is complete, I flush the line with 30cc's of saline. Today Margy took Bill to the BMT clinic for his morning dose of Foscarnet. I went to Orlando to attend a Healthcare Financial Management Association (HFMA) two day seminar. Bill is continuing to eat food even though his throat is hurting. I returned back to Tampa to administer Bill's evening dose of Foscarnet and tub feeding.
Day 73 - Friday, January 21, 2011
WBC 3.24 / ANC 2.69 / Creatinine 0.9 / BUN 24 / Hemoglobin 9.7 / Platelets 133 / Magnesium 2.2
The routine today is pretty much the same as it was yesterday. When I returned from the seminar Margy left to return home to her husband Gary, in Deltona, FL. Home administration of Foscarnet and ng feeding is going well.
Day 74 - Saturday, January 22, 2011
WBC 4.0 / ANC 3.28 / Creatinine 0.9 / BUN 24 / Hemoglobin 10.0 / Platelets 137 / Magnesium 2.1
We have fallen into a routine now. Approximately 7:30am the ng feeding ends with loud beeps from the pump. I remove the tube and flush the line. Next we tackle breakfast. Bill has been eating cereal in the morning. Then we are off to the BMT clinic for our morning dose of foscarnet at 9:00am. We are usually done between 12:30pm and 1:00pm. Off to the store to pick up some food supplies and then back to the apartment for lunch. Around 6:00pm I take the foscarnet and pre and post saline out of the fridge so it can reach room temperature. I then prepare dinner. Believe it or not, Kraft macaroni and cheese is still the food of choice. At 8:00pm I start the pre hydration with saline for one hour. At 9:00pm the foscarnet is started and runs for one hour. At 9:30pm I prepare the bag of food to start the ng feeding. Four cans of Jevity 1.2 cal is put in the bag that is then attached to the EnteralLite Infinity pump. The pump runs at 100ml per hour. At 10:00pm the post hydration with saline is started and runs for one hour. At 11:00pm we are done with the infusion, I flush the line with Saline and heparin. By 11:30pm we are in bed.
Monday is mail day. On her way to work, Barbara Diesel, stops at the Great Outdoors to pick up our mail from Bill and Mae (Bill and Mae empty our mail box each day). Barbara hands the mail off to David Gunsteens who on his way home delivers the mail to where ever we are in Tampa. If we were in the hospital, David came to the hospital. If we are in the apartment he comes to the apartment. Bill and Mae, Barbara and David don't think anything of it and are happy to help. To me and Bill they are providing an unbelievable service. I cannot put into words the gratitude we have for them. They never missed a week. Thank you.
Day 75 - Sunday, January 23, 2011
WBC 3.76 / ANC 2.79 / Creatinine 0.9 / BUN 24 / Hemoglobin 10.0 / Platelets 135 / Magnesium 2.0
Same as Saturday with one difference. The bladder spasms are getting worse. The PA prescribed Phenazopyridine - Pyridium. Phenazopyridine relieves urinary tract pain, burning, irritation, and discomfort, as well as urgent and frequent urination caused by urinary tract infections, surgery, injury, or examination procedures. However, phenazopyridine is not an antibiotic; it does not cure infections. This drug causes the urine to turn orange.
Day 76 - Monday, January 24, 2011
WBC 4.28 / ANC 3.38 / Creatinine 0.9 / BUN 22 / Hemoglobin 10.3 / Platelets 152 / Magnesium 2.1
Same as Saturday with one difference. The pain in the throat is starting to get worse instead of better. The mouth and lips are completely healed. We decide to give the throat more time and wait until our appointment on Wednesday. The ups and downs can be very discouraging.
Day 77 - Tuesday, January 25, 2011
WBC 4.31 / ANC 3.29 / Creatinine 0.9 / BUN 26 / Hemoglobin 9.7 / Platelets 158 / Magnesium 2.1
Same as yesterday. Administered the last dose of foscarnet that we had in the house.
Day 78 - Wednesday, January 26, 2011
Today was different. We did not need to be at the clinic for our morning dose of foscarnet. Today is our appointment with Dr. Ayala. Things to discuss are: changes in foscarnet, bladder spasms, throat pain, ng feeding, weight and the all important day 100!!!
First blood work was done. We then met with the nutritionist to discuss how Bill is doing with food and what we can do to get more calories into his body. We then met with the Dr.
Day 72 - Thursday, January 20, 2011
WBC 4.05 / ANC 2.99 / Creatinine 0.9 / BUN 23 / Hemoglobin 10.1 / Platelets 137 / Magnesium 2.1
First thing in the morning, as soon as the ng tube feeding is complete, I flush the line with 30cc's of saline. Today Margy took Bill to the BMT clinic for his morning dose of Foscarnet. I went to Orlando to attend a Healthcare Financial Management Association (HFMA) two day seminar. Bill is continuing to eat food even though his throat is hurting. I returned back to Tampa to administer Bill's evening dose of Foscarnet and tub feeding.
Day 73 - Friday, January 21, 2011
WBC 3.24 / ANC 2.69 / Creatinine 0.9 / BUN 24 / Hemoglobin 9.7 / Platelets 133 / Magnesium 2.2
The routine today is pretty much the same as it was yesterday. When I returned from the seminar Margy left to return home to her husband Gary, in Deltona, FL. Home administration of Foscarnet and ng feeding is going well.
Day 74 - Saturday, January 22, 2011
WBC 4.0 / ANC 3.28 / Creatinine 0.9 / BUN 24 / Hemoglobin 10.0 / Platelets 137 / Magnesium 2.1
We have fallen into a routine now. Approximately 7:30am the ng feeding ends with loud beeps from the pump. I remove the tube and flush the line. Next we tackle breakfast. Bill has been eating cereal in the morning. Then we are off to the BMT clinic for our morning dose of foscarnet at 9:00am. We are usually done between 12:30pm and 1:00pm. Off to the store to pick up some food supplies and then back to the apartment for lunch. Around 6:00pm I take the foscarnet and pre and post saline out of the fridge so it can reach room temperature. I then prepare dinner. Believe it or not, Kraft macaroni and cheese is still the food of choice. At 8:00pm I start the pre hydration with saline for one hour. At 9:00pm the foscarnet is started and runs for one hour. At 9:30pm I prepare the bag of food to start the ng feeding. Four cans of Jevity 1.2 cal is put in the bag that is then attached to the EnteralLite Infinity pump. The pump runs at 100ml per hour. At 10:00pm the post hydration with saline is started and runs for one hour. At 11:00pm we are done with the infusion, I flush the line with Saline and heparin. By 11:30pm we are in bed.
Monday is mail day. On her way to work, Barbara Diesel, stops at the Great Outdoors to pick up our mail from Bill and Mae (Bill and Mae empty our mail box each day). Barbara hands the mail off to David Gunsteens who on his way home delivers the mail to where ever we are in Tampa. If we were in the hospital, David came to the hospital. If we are in the apartment he comes to the apartment. Bill and Mae, Barbara and David don't think anything of it and are happy to help. To me and Bill they are providing an unbelievable service. I cannot put into words the gratitude we have for them. They never missed a week. Thank you.
Day 75 - Sunday, January 23, 2011
WBC 3.76 / ANC 2.79 / Creatinine 0.9 / BUN 24 / Hemoglobin 10.0 / Platelets 135 / Magnesium 2.0
Same as Saturday with one difference. The bladder spasms are getting worse. The PA prescribed Phenazopyridine - Pyridium. Phenazopyridine relieves urinary tract pain, burning, irritation, and discomfort, as well as urgent and frequent urination caused by urinary tract infections, surgery, injury, or examination procedures. However, phenazopyridine is not an antibiotic; it does not cure infections. This drug causes the urine to turn orange.
Day 76 - Monday, January 24, 2011
WBC 4.28 / ANC 3.38 / Creatinine 0.9 / BUN 22 / Hemoglobin 10.3 / Platelets 152 / Magnesium 2.1
Same as Saturday with one difference. The pain in the throat is starting to get worse instead of better. The mouth and lips are completely healed. We decide to give the throat more time and wait until our appointment on Wednesday. The ups and downs can be very discouraging.
Day 77 - Tuesday, January 25, 2011
WBC 4.31 / ANC 3.29 / Creatinine 0.9 / BUN 26 / Hemoglobin 9.7 / Platelets 158 / Magnesium 2.1
Same as yesterday. Administered the last dose of foscarnet that we had in the house.
Day 78 - Wednesday, January 26, 2011
Today was different. We did not need to be at the clinic for our morning dose of foscarnet. Today is our appointment with Dr. Ayala. Things to discuss are: changes in foscarnet, bladder spasms, throat pain, ng feeding, weight and the all important day 100!!!
First blood work was done. We then met with the nutritionist to discuss how Bill is doing with food and what we can do to get more calories into his body. We then met with the Dr.
- Blood work is slowing coming back.
- Weight, at 124 lbs is up from the low of 113 lbs but still short of the 137 lbs pre transplant.
- Ng feeding will continue for another three to four weeks. Since discharge last week, Bill is eating and getting ng feeding but is not gaining any additional weight. There is concern that stopping the ng feeding will have an negative impact on his progress and health.
- Foscarnet will continue for another two weeks, at one dose a day. The dose will be increased from 1,272 mg IV to 2,520mg IV. The dose for today was done in the BMT infusion center. Tomorrow morning Walgreen's infusion will deliver the next weeks worth of treatment.
- The next bone marrow biopsy will be around day 90 along with some vital organ testing to see how Bill compares to his baseline obtained prior to transplant.
- The doctor is putting in an order to have the triple lumen catheter removed by the end of next week. He is starting the process of getting Bill ready to move back home home to Titusville.
- If everything continues to go as it is today, Bill will be on track to go home home by day 100. He is still dealing with the virus' and has a long road to recovery from what they are doing to his body. When we go home home we will back to Tampa for a weekly appointment with the Dr. Bill will also continue to stay on the ng feeding in Titusville. Since Bill's case turned out to be more complicated than what they normally see, he will need to follow up weekly to ensure there are no new complications and the current virus' are behaving and getting better.
- mycophenolate mofetil - Cellcept is being discontinued as of tonight. This drug is used to prevent GVHD. It prevents GVHD by suppressing the immune system. This suppression could possibly delay the body from getting strong enough to heal the virus'. Stopping Cellcept around day 78 is normal since Bill has not had any signs of GVHD, other than the touch he had in his stomach.
- Starting today, we are now on a three day a week schedule to have blood work done. Since foscarnet will be administered at home once a day, we will only go to the BMT clinic on Sundays, Wednesdays and Fridays. On Wednesday we will meet with the doctor.
Tonight only had to hook up the ng feeding, slow night.
Tomorrow, Day 79, will be the second day since November 2 that we will not visit BMT clinic / Moffitt Cancer Center. If you do the math that is 87 days we have been here, 85 of which have been in some nature at Moffitt. Tomorrow will be like going on vacation.
Thursday, January 20, 2011
Post # 51 – Day 54 through Day 71
Day 54 – Sunday, January 2, 2011
As we have done every other day, we started off the day with our daily liter of fluid. When we arrived at the clinic we asked the nurse if they could page the PA on call so we could discuss our concern with the sores in Bill’s mouth and his declining ability to eat. The PA did not hesitate to take action; Bill was taken off of Famvir and put on Valacyclovir (Brand name: Valtrex) 1000mg 1 tablet 2 times a day. Valacyclovir is used to treat herpes zoster (shingles), herpes Labialis (Cold Sores) and herpes simplex. The pill is big and dark blue. It is by far the largest pill I have ever seen. Bill and I looked at the pill and wondered, with the sores in his throat and esophagus, how he was going to swallow it.
Day 55 – Monday, January 3, 2011
Off to the clinic for our daily liter of fluid. Bill is starting to get some relief in his mouth due to the switch to Valtrex. We had a visit from the nutritionist because we are concerned with the weight lose Bill has had. He is now weighing 117 pounds. The nutritionist believes that Bill is not getting enough calories to gain weight. We were instructed to document what Bill is eating and look up the caloric value to ensure he is getting approximately 2000 calories a day. Not much else to report this day.
Day 56 – Tuesday, January 4, 2011
WBC 2.51 / ANC 2.31 / Creatinine 1.2 / BUN 16 / Hemoglobin 9.1 / Platelets 122 / Magnesium 1.3
Bill is still waking many times during the night and he continues to have blood in his urine. His mouth was feeling better and he wanted to eat. He had 7.5 oz of corn beef hash, 2 eggs fried, instant carnation breakfast in whole milk and ½ an English muffin with butter. Not bad for someone that has not been able to eat for a long time. Another trip to the clinic for our daily liter of fluid. Magnesium was low so Bill received a bag and his dose at home was increased from 2 tablets 3 times a day (6) to 3 tablets 3 times a day (9). Bill continued to eat well for the remainder of the day and reached the 2000 calories. For those of you that know Bill’s eating habits (Bill always took care of himself and ate healthy) will find it hard to believe that his food of choice is Kraft macaroni and cheese (original). Bill had occupational therapy in the apartment with Meg from the home health agency.
Day 57 – Wednesday, January 5, 2011
WBC 2.68 / ANC 2.49 / Creatinine 1.1 / BUN 18 / Hemoglobin 8.8 / Platelets 124 / Magnesium 1.8
Bill received his daily liter of fluid today. The most amazing thing happened this morning, Bill’s urine was clear. Although not easily seen, there was very little sediment of blood. It is amazing how yesterday it was red and today normal. Bill is continuing to eat well as the pain decreases. Our Weekly appointment with Dr. Ayala went well. Although his weight has dropped to 116, the doctor is happy with how Bill is responding to the Valtrix and Bill’s over all condition. He believes now that Bill is eating the weight will start to come back.
We received the results from the Chimerism study done on the bone marrow and peripheral blood. A chimerism study measures the state in which donor cells have durably engrafted in the recipient. The peripheral blood was drawn on December 8th 2010 and measured CD3 and CD33.
According to Wikipedia:
CD stands for Cluster of Differentiation
CD3 (immunology), an antigen, cluster of differentiation protein (immunology), part of the T cell receptor (TCR) complex on a mature T lymphocyte.
CD33 is a transmembrane receptor expressed on cells of myeloid lineage. It is usually considered myeloid-specific, but it can also be found on some lymphoild cells. It binds sialic acids, therefore is a member of the SIGLEC family of lectins.
I don’t really understand what this all means, but I do know the results were good. The CD3 post transplant engraftment analysis revealed 77% donor cells and 23% patient cells. The CD33 post transplant engraftment analysis revealed 100% donor cells and 0% patient cells.
The bone marrow sample was obtained on December 15th, 2010 and measured the bone marrow composition. The bone marrow post transplant engraftment analysis revealed 78% donor cells and 22% patient cells. Dr. Ayala informed us that Bill is right on target. The results are exactly what he expected to see at this point post transplant. So far Bill has not taken on any of Ed’s traits.
If things continue to move in the same direction Bill can look forward to having the triple lumen catheter removed in about two weeks. Bill was taken off of Budesonide (Entocort) which is used to treat GVHD in the gut. Bill will be reducing his dosage of Mycophenolate Mofetil (CellCept) from 2 tablets two times per day to 1 tablet two times a day. CellCept is an immunosuppressant. The doctor also wants to start to taper off on the fluids so Bill will be reduced to three days a week (Sunday, Wednesday and Friday)
The appointment with Urology for a consult regarding the kidneys was scheduled for Friday, January 7th at 8:50am. Bill had physical therapy in the apartment with Joni from the home health agency. Bill continues to eat well coming close to 2000 calories.
Day 58 – Thursday, January 6, 2011
Bill is starting to notice that the pain in his mouth and throat is starting to increase again. He has not been able to eat as much as he was eating the last few days. We are hoping that the pain is a temporary setback and will improve in the next day or two. Today is the first day that Bill did not go to the clinic for fluids. Bill had a follow up appointment at the clinic so it was not a free day. Bill had occupational therapy in the apartment with Meg from the home health agency.
Day 59 – Friday, January 7, 2011
The appointment with the urology doctor went well. The Dr. does not want to put a stent in at this time. The left side of the kidney has improved since the last study. Since the creatinine and BUN levels are doing well, the Dr. believes that the right side has a good chance of improving as well. Now we are off to the BMT for the Friday liter of fluid. Instead of over three hours, the infusion will be over two hours. The pain is not getting better, it is getting marginally worse. Bill’s food intake is also decreasing. The PA tells us to give it a little more time.
Day 60 – Saturday, January 8, 2011
Today was like a vacation. This is the first day since November 2nd that we did not need to go to the hospital or clinic. I know I felt like a new person, it was wonderful!! The pain is continuing to get worse, Bill is hardly eating anything. We had visitors; his caregivers from Titusville spent a few hours. The urine is still clear and the number of times he wakes up during the night is down from 20 to about 13.
Day 61 – Sunday, January 9, 2011
This morning Bill was in a lot of pain. We decided it was important that we spoke with the PA on call in the clinic to see if there was something that could be done for the pain. Bill was eating less and less and losing weight. Today was the first day of our three day a week cycle which means Bill will have Monday, Tuesday, Thursday and Saturday off. We got to the BMT clinic for our daily liter of fluid and asked to have the PA paged. The PA on call was Christy, one of Dr. Ayala’s PA’s so we knew we were in good hands. She took one look at Bill’s lip, mouth and throat and agreed the Valtrix was not working. Christy decided that Bill needed to be switched to 500mg of IV Acyclovir twice a day for seven days. The first dose was administered today.
This evening Bill’s sister Margy came to Tampa to relieve me so I could go back home to work. I had not been to work in Titusville since November 1st 2010.
Day 62 - Monday, January 10, 2011
Today I spent the day at work in Titusville. It was great to be back with my work family. After work I went to visit with Wendy and Scott and I got to see our bird Tweedy. The bird was happy to see me and was happy to be out of his cage to stretch his wings.
Margy took Bill to the BMT clinic in the morning and in the late afternoon for his two doses of IV Acyclovir. Still no relief and still not eating much.
Day 63 - Tuesday, January 11, 2011
I spent a second day in Titusville and in the evening I came back to Tampa. I was happy to see Bill. Margy took him for his two treatments and he was still not feeling any relief. The hospital order home health to come out to the house on Wednesday to train me on administering the IV Acyclovir so Bill did not have to go back to the clinic twice a day. Meg came to the house for a session of OT.
Day 64 – Wednesday, January 12, 2011
WBC 3.13 / ANC 2.35 / Creatinine 1.5 / BUN 22 / Hemoglobin 9.0 / Platelets 127 / Magnesium 1.7
At 8:00am sharp the home health nurse came to the house and I received my training. The nurse had me speak every step in a trial run to make sure I retained the process. I then did my first infusion. Bill did not eat anything for breakfast, the pain was too much. After the infusion we headed out to the BMT clinic for our Wednesday liter of fluid. Bill seemed to be losing more weight, our observation was confirmed when they did his vitals. Bill was now down to 113 pounds, 24 pounds less than pre transplant. Since Wednesday is our day to meet with Dr. Ayala we were eager to hear what his plan of action was. Christy, Dr. Ayala’s PA came to see us first. She asked the usual questions and did an exam. When she looked in Bill’s mouth she could see the IV Acyclovir was not working. When she returned with Dr. Ayala they only said on sentence “We are going to have to admit you”. A lot goes through your mind in that moment. How serious is it and what are they going to do to turn this around.
The plan of action was to put Bill on Foscarnet, TPN and then insert a feeding tube through his nose. The Dr. felt he would be discharged by the week-end. Foscarnet 1272mg IV twice daily, 250ml of saline before administration and 250mg saline after.
From Drugs.com - RENAL IMPAIRMENT IS THE MAJOR TOXICITY OF Foscarnet SODIUM INJECTION. FREQUENT MONITORING OF SERUM CREATININE, WITH DOSE ADJUSTMENT FOR CHANGES IN RENAL FUNCTION, AND ADEQUATE HYDRATION WITH ADMINISTRATION OF Foscarnet SODIUM INJECTION, IS IMPERATIVE. (See ADMINISTRATION section; Hydration.)
SEIZURES, RELATED TO ALTERATIONS IN PLASMA MINERALS AND ELECTROLYTES, HAVE BEEN ASSOCIATED WITH Foscarnet SODIUM INJECTION TREATMENT. THEREFORE, PATIENTS MUST BE CAREFULLY MONITORED FOR SUCH CHANGES AND THEIR POTENTIAL SEQUELAE. MINERAL AND ELECTROLYTE SUPPLEMENTATION MAY BE REQUIRED.
Foscarnet SODIUM INJECTION IS INDICATED FOR USE ONLY IN IMMUNOCOMPROMISED PATIENTS WITH CMV RETINITIS AND MUCOCUTANEOUS ACYCLOVIR-RESISTANT HSV INFECTIONS.
All of the nurses were happy to see us, but not happy to see that Bill was being readmitted. We were in room 3729, which was directly below the room that the transplant was done in. Bill was given his first dose of foscarnet with no issues and all of his meds were changed to IV or liquid since he was not able to swallaw again. I went back to the apartment to get his memory foam, and some toiletries. I returned, got Bill ready for bed and returned to the apartment for the night.
Day 65 – Thursday, January 13, 2011 – Happy Birthday Stephan
WBC 1.99 / ANC --- / Creatinine 1.4 / BUN 17 / Hemoglobin 7.80 / Platelets 88 / Magnesium ---
It seems Bill is somewhat of celebrity. Dr. Mishra heard he was back and stopped by to see as well as several of the nurses (Nancy, Jen, Serena and Michelle). Since Bill’s hemoglobin was less than 8.0 he received two units of blood. I could not understand why the levels would drop so much from one day to the next so I asked the Dr. when they rounded. Dehydration can inflate the blood values and they believed this was what happened with Bill. TPN was started in the evening.
I could tell that Bill wanted me to stay with him, so I went to the apartment to get my stuff and stayed in the room with him.
Day 66 – Friday, January 14, 2011
WBC 2.12 / ANC 1.58 / Creatinine 1.2 / BUN 13 / Hemoglobin 9.7 / Platelets 92 / Magnesium 1.4
Today magnesium was added to the pre hydration since Bill is not taking the pills. Bill is starting to have some relief on his lips and in his mouth. He was scheduled for an endoscopy to see what the esophagus looked like and to compare to the first endoscopy. During the endoscopy a feeding tube was inserted through the nose. After the procedure we spoke with the physician and he indicated that the ulcers are pretty bad, with one about a half an inch wide going all around the esophagus.
From Wikipedia - A feeding tube is a medical device used to provide nutrition to patients who cannot obtain nutrition by swallowing. The state of being fed by a feeding tube is called gavage, enteral feeding or tube feeding. Placement may be temporary for the treatment of acute conditions or lifelong in the case of chronic disabilities. A variety of feeding tubes are used in medical practice. They are usually made of polyurethane or silicone. The diameter of a feeding tube is measured in French units (each French unit equals 0.33 millimeters). They are classified by site of insertion and intended use.
Bill received a nasogastric feeding tube. A nasogastric feeding tube, or "NG-tube", is passed through the nares (nostril), down the esophagus and into the stomach.
Day 67 – Saturday, January 15, 2011
WBC 1.89 / ANC 1.42 / Creatinine 1.0 / BUN 13 / Hemoglobin 10.3 / Platelets 83 / Magnesium ---
Bill continues to get relief on his lips and in his mouth. The throat is not healing as quick. We are happy to see that Bill’s creatinine is coming down instead of going up. So far after 5 doses of foscarnet, Bill’s renal function is doing great. The enteral feeding is scheduled to begin today. It starts at 20ml per hour and then every six hours it is increased 10ml until Bill is up to 60ml per hour. The TPN will be stopped in the evening as the enteral feeding is ramped up. The Dr. informed us that Bill would probably be discharged on Tuesday, since Monday was a holiday creating difficulty getting everything set up for home health.
We had visitors – Barbara Diesel and Nancy Rhinelander with her husband Marty. Both Barbara and Nancy work with me in Titusville.
Day 68– Sunday, January 16, 2011
WBC 2.61 / ANC 2.04 / Creatinine 0.9 / BUN 18 / Hemoglobin 9.5 / Platelets 88 / Magnesium 1.5
Today was a quiet day. Bill is tolerating the enteral feeding very well at 60ml per hour. Starting today he will ramp up to 75ml per hour in preparation for going home. The rate while home will be 85ml per hour the first night and then 100ml per hour for the remainder of the time Bill is on the feeding tube. At 100ml per hour Bill will be done with his feeding in 10 hours so he can disconnect prior to leaving for his daily visit to the BMT clinic.
Day 69 – Monday, January 17, 2011
WBC 2.58 / ANC 2.07 / Creatinine 0.9 / BUN 18 / Hemoglobin 9.8 / Platelets 94 / Magnesium 1.8
Today is our last day as an inpatient. Bill is tolerating the foscarnet and enteral feeding like a pro.
Day 70 – Tuesday, January 18, 2011
WBC 2.51 / ANC 2.26 / Creatinine 0.8 / BUN 19 / Hemoglobin 9.8 / Platelets 97 / Magnesium 1.5
All the plans were made. Bill would get his morning and evening dose of foscarnet while in the hospital and then starting Wednesday he would get the morning dose in the BMT clinic and I would do the evening dose. The enteral feeding food and supplies were to be delivered around 7:00pm with a home health nurse coming to do the training. Bill was discharged at 6:00pm. We met the nurse shortly after 7:00pm, the training went well and I did my first administration of enteral feeding.
Day 71 – Wednesday, January 19, 2011
WBC 3.27 / ANC 2.52 / Creatinine 0.8 / BUN 22 / Hemoglobin 10.6 / Platelets 128 / Magnesium 1.5
We went to the BMT clinic at 9:30am for the morning dose of foscarnet. Afterwards came home and got things ready for the medicine delivery and home health appointment for training. Bill had some soup for lunch and a small amount of gnocchi for dinner. The mouth and lips look great. Bill is still having pain from the esophagus.
I was happy when I saw the meds because they were the same delivery method as the Acyclovir IV was. Each dose is in a pressurized Homepump Eclipse. The enteral feeding and the foscarnet administration went well. Margy came this evening so I could leave in the morning to go to a seminar. Margy will stay Friday as well, since the seminar is two days.
Homepump Eclipse® Infusion System
The Homepump Eclipse Infusion System product line has the widest range of sizes and flow rates, making it an ideal choice for IV Antibiotic delivery. The market leader in elastomeric technology, Homepump Eclipse provides many benefits.
Features & Benefits
• Reduces nursing labor by reducing patient teaching time and cutting down on unscheduled nursing visits
• Compact size makes storage easier, both in the pharmacy and the patient’s home with easy disposal in standard "Sharps" containers
• Patented multi-layer elastomeric membrane, assures outstanding performance and reliability
• Easy for the patient to learn and use. Just attach to the IV access site and open the clamp
Day 54 – Sunday, January 2, 2011
As we have done every other day, we started off the day with our daily liter of fluid. When we arrived at the clinic we asked the nurse if they could page the PA on call so we could discuss our concern with the sores in Bill’s mouth and his declining ability to eat. The PA did not hesitate to take action; Bill was taken off of Famvir and put on Valacyclovir (Brand name: Valtrex) 1000mg 1 tablet 2 times a day. Valacyclovir is used to treat herpes zoster (shingles), herpes Labialis (Cold Sores) and herpes simplex. The pill is big and dark blue. It is by far the largest pill I have ever seen. Bill and I looked at the pill and wondered, with the sores in his throat and esophagus, how he was going to swallow it.
Day 55 – Monday, January 3, 2011
Off to the clinic for our daily liter of fluid. Bill is starting to get some relief in his mouth due to the switch to Valtrex. We had a visit from the nutritionist because we are concerned with the weight lose Bill has had. He is now weighing 117 pounds. The nutritionist believes that Bill is not getting enough calories to gain weight. We were instructed to document what Bill is eating and look up the caloric value to ensure he is getting approximately 2000 calories a day. Not much else to report this day.
Day 56 – Tuesday, January 4, 2011
WBC 2.51 / ANC 2.31 / Creatinine 1.2 / BUN 16 / Hemoglobin 9.1 / Platelets 122 / Magnesium 1.3
Bill is still waking many times during the night and he continues to have blood in his urine. His mouth was feeling better and he wanted to eat. He had 7.5 oz of corn beef hash, 2 eggs fried, instant carnation breakfast in whole milk and ½ an English muffin with butter. Not bad for someone that has not been able to eat for a long time. Another trip to the clinic for our daily liter of fluid. Magnesium was low so Bill received a bag and his dose at home was increased from 2 tablets 3 times a day (6) to 3 tablets 3 times a day (9). Bill continued to eat well for the remainder of the day and reached the 2000 calories. For those of you that know Bill’s eating habits (Bill always took care of himself and ate healthy) will find it hard to believe that his food of choice is Kraft macaroni and cheese (original). Bill had occupational therapy in the apartment with Meg from the home health agency.
Day 57 – Wednesday, January 5, 2011
WBC 2.68 / ANC 2.49 / Creatinine 1.1 / BUN 18 / Hemoglobin 8.8 / Platelets 124 / Magnesium 1.8
Bill received his daily liter of fluid today. The most amazing thing happened this morning, Bill’s urine was clear. Although not easily seen, there was very little sediment of blood. It is amazing how yesterday it was red and today normal. Bill is continuing to eat well as the pain decreases. Our Weekly appointment with Dr. Ayala went well. Although his weight has dropped to 116, the doctor is happy with how Bill is responding to the Valtrix and Bill’s over all condition. He believes now that Bill is eating the weight will start to come back.
We received the results from the Chimerism study done on the bone marrow and peripheral blood. A chimerism study measures the state in which donor cells have durably engrafted in the recipient. The peripheral blood was drawn on December 8th 2010 and measured CD3 and CD33.
According to Wikipedia:
CD stands for Cluster of Differentiation
CD3 (immunology), an antigen, cluster of differentiation protein (immunology), part of the T cell receptor (TCR) complex on a mature T lymphocyte.
CD33 is a transmembrane receptor expressed on cells of myeloid lineage. It is usually considered myeloid-specific, but it can also be found on some lymphoild cells. It binds sialic acids, therefore is a member of the SIGLEC family of lectins.
I don’t really understand what this all means, but I do know the results were good. The CD3 post transplant engraftment analysis revealed 77% donor cells and 23% patient cells. The CD33 post transplant engraftment analysis revealed 100% donor cells and 0% patient cells.
The bone marrow sample was obtained on December 15th, 2010 and measured the bone marrow composition. The bone marrow post transplant engraftment analysis revealed 78% donor cells and 22% patient cells. Dr. Ayala informed us that Bill is right on target. The results are exactly what he expected to see at this point post transplant. So far Bill has not taken on any of Ed’s traits.
If things continue to move in the same direction Bill can look forward to having the triple lumen catheter removed in about two weeks. Bill was taken off of Budesonide (Entocort) which is used to treat GVHD in the gut. Bill will be reducing his dosage of Mycophenolate Mofetil (CellCept) from 2 tablets two times per day to 1 tablet two times a day. CellCept is an immunosuppressant. The doctor also wants to start to taper off on the fluids so Bill will be reduced to three days a week (Sunday, Wednesday and Friday)
The appointment with Urology for a consult regarding the kidneys was scheduled for Friday, January 7th at 8:50am. Bill had physical therapy in the apartment with Joni from the home health agency. Bill continues to eat well coming close to 2000 calories.
Day 58 – Thursday, January 6, 2011
Bill is starting to notice that the pain in his mouth and throat is starting to increase again. He has not been able to eat as much as he was eating the last few days. We are hoping that the pain is a temporary setback and will improve in the next day or two. Today is the first day that Bill did not go to the clinic for fluids. Bill had a follow up appointment at the clinic so it was not a free day. Bill had occupational therapy in the apartment with Meg from the home health agency.
Day 59 – Friday, January 7, 2011
The appointment with the urology doctor went well. The Dr. does not want to put a stent in at this time. The left side of the kidney has improved since the last study. Since the creatinine and BUN levels are doing well, the Dr. believes that the right side has a good chance of improving as well. Now we are off to the BMT for the Friday liter of fluid. Instead of over three hours, the infusion will be over two hours. The pain is not getting better, it is getting marginally worse. Bill’s food intake is also decreasing. The PA tells us to give it a little more time.
Day 60 – Saturday, January 8, 2011
Today was like a vacation. This is the first day since November 2nd that we did not need to go to the hospital or clinic. I know I felt like a new person, it was wonderful!! The pain is continuing to get worse, Bill is hardly eating anything. We had visitors; his caregivers from Titusville spent a few hours. The urine is still clear and the number of times he wakes up during the night is down from 20 to about 13.
Day 61 – Sunday, January 9, 2011
This morning Bill was in a lot of pain. We decided it was important that we spoke with the PA on call in the clinic to see if there was something that could be done for the pain. Bill was eating less and less and losing weight. Today was the first day of our three day a week cycle which means Bill will have Monday, Tuesday, Thursday and Saturday off. We got to the BMT clinic for our daily liter of fluid and asked to have the PA paged. The PA on call was Christy, one of Dr. Ayala’s PA’s so we knew we were in good hands. She took one look at Bill’s lip, mouth and throat and agreed the Valtrix was not working. Christy decided that Bill needed to be switched to 500mg of IV Acyclovir twice a day for seven days. The first dose was administered today.
This evening Bill’s sister Margy came to Tampa to relieve me so I could go back home to work. I had not been to work in Titusville since November 1st 2010.
Day 62 - Monday, January 10, 2011
Today I spent the day at work in Titusville. It was great to be back with my work family. After work I went to visit with Wendy and Scott and I got to see our bird Tweedy. The bird was happy to see me and was happy to be out of his cage to stretch his wings.
Margy took Bill to the BMT clinic in the morning and in the late afternoon for his two doses of IV Acyclovir. Still no relief and still not eating much.
Day 63 - Tuesday, January 11, 2011
I spent a second day in Titusville and in the evening I came back to Tampa. I was happy to see Bill. Margy took him for his two treatments and he was still not feeling any relief. The hospital order home health to come out to the house on Wednesday to train me on administering the IV Acyclovir so Bill did not have to go back to the clinic twice a day. Meg came to the house for a session of OT.
Day 64 – Wednesday, January 12, 2011
WBC 3.13 / ANC 2.35 / Creatinine 1.5 / BUN 22 / Hemoglobin 9.0 / Platelets 127 / Magnesium 1.7
At 8:00am sharp the home health nurse came to the house and I received my training. The nurse had me speak every step in a trial run to make sure I retained the process. I then did my first infusion. Bill did not eat anything for breakfast, the pain was too much. After the infusion we headed out to the BMT clinic for our Wednesday liter of fluid. Bill seemed to be losing more weight, our observation was confirmed when they did his vitals. Bill was now down to 113 pounds, 24 pounds less than pre transplant. Since Wednesday is our day to meet with Dr. Ayala we were eager to hear what his plan of action was. Christy, Dr. Ayala’s PA came to see us first. She asked the usual questions and did an exam. When she looked in Bill’s mouth she could see the IV Acyclovir was not working. When she returned with Dr. Ayala they only said on sentence “We are going to have to admit you”. A lot goes through your mind in that moment. How serious is it and what are they going to do to turn this around.
The plan of action was to put Bill on Foscarnet, TPN and then insert a feeding tube through his nose. The Dr. felt he would be discharged by the week-end. Foscarnet 1272mg IV twice daily, 250ml of saline before administration and 250mg saline after.
From Drugs.com - RENAL IMPAIRMENT IS THE MAJOR TOXICITY OF Foscarnet SODIUM INJECTION. FREQUENT MONITORING OF SERUM CREATININE, WITH DOSE ADJUSTMENT FOR CHANGES IN RENAL FUNCTION, AND ADEQUATE HYDRATION WITH ADMINISTRATION OF Foscarnet SODIUM INJECTION, IS IMPERATIVE. (See ADMINISTRATION section; Hydration.)
SEIZURES, RELATED TO ALTERATIONS IN PLASMA MINERALS AND ELECTROLYTES, HAVE BEEN ASSOCIATED WITH Foscarnet SODIUM INJECTION TREATMENT. THEREFORE, PATIENTS MUST BE CAREFULLY MONITORED FOR SUCH CHANGES AND THEIR POTENTIAL SEQUELAE. MINERAL AND ELECTROLYTE SUPPLEMENTATION MAY BE REQUIRED.
Foscarnet SODIUM INJECTION IS INDICATED FOR USE ONLY IN IMMUNOCOMPROMISED PATIENTS WITH CMV RETINITIS AND MUCOCUTANEOUS ACYCLOVIR-RESISTANT HSV INFECTIONS.
All of the nurses were happy to see us, but not happy to see that Bill was being readmitted. We were in room 3729, which was directly below the room that the transplant was done in. Bill was given his first dose of foscarnet with no issues and all of his meds were changed to IV or liquid since he was not able to swallaw again. I went back to the apartment to get his memory foam, and some toiletries. I returned, got Bill ready for bed and returned to the apartment for the night.
Day 65 – Thursday, January 13, 2011 – Happy Birthday Stephan
WBC 1.99 / ANC --- / Creatinine 1.4 / BUN 17 / Hemoglobin 7.80 / Platelets 88 / Magnesium ---
It seems Bill is somewhat of celebrity. Dr. Mishra heard he was back and stopped by to see as well as several of the nurses (Nancy, Jen, Serena and Michelle). Since Bill’s hemoglobin was less than 8.0 he received two units of blood. I could not understand why the levels would drop so much from one day to the next so I asked the Dr. when they rounded. Dehydration can inflate the blood values and they believed this was what happened with Bill. TPN was started in the evening.
I could tell that Bill wanted me to stay with him, so I went to the apartment to get my stuff and stayed in the room with him.
Day 66 – Friday, January 14, 2011
WBC 2.12 / ANC 1.58 / Creatinine 1.2 / BUN 13 / Hemoglobin 9.7 / Platelets 92 / Magnesium 1.4
Today magnesium was added to the pre hydration since Bill is not taking the pills. Bill is starting to have some relief on his lips and in his mouth. He was scheduled for an endoscopy to see what the esophagus looked like and to compare to the first endoscopy. During the endoscopy a feeding tube was inserted through the nose. After the procedure we spoke with the physician and he indicated that the ulcers are pretty bad, with one about a half an inch wide going all around the esophagus.
From Wikipedia - A feeding tube is a medical device used to provide nutrition to patients who cannot obtain nutrition by swallowing. The state of being fed by a feeding tube is called gavage, enteral feeding or tube feeding. Placement may be temporary for the treatment of acute conditions or lifelong in the case of chronic disabilities. A variety of feeding tubes are used in medical practice. They are usually made of polyurethane or silicone. The diameter of a feeding tube is measured in French units (each French unit equals 0.33 millimeters). They are classified by site of insertion and intended use.
Bill received a nasogastric feeding tube. A nasogastric feeding tube, or "NG-tube", is passed through the nares (nostril), down the esophagus and into the stomach.
Day 67 – Saturday, January 15, 2011
WBC 1.89 / ANC 1.42 / Creatinine 1.0 / BUN 13 / Hemoglobin 10.3 / Platelets 83 / Magnesium ---
Bill continues to get relief on his lips and in his mouth. The throat is not healing as quick. We are happy to see that Bill’s creatinine is coming down instead of going up. So far after 5 doses of foscarnet, Bill’s renal function is doing great. The enteral feeding is scheduled to begin today. It starts at 20ml per hour and then every six hours it is increased 10ml until Bill is up to 60ml per hour. The TPN will be stopped in the evening as the enteral feeding is ramped up. The Dr. informed us that Bill would probably be discharged on Tuesday, since Monday was a holiday creating difficulty getting everything set up for home health.
We had visitors – Barbara Diesel and Nancy Rhinelander with her husband Marty. Both Barbara and Nancy work with me in Titusville.
Day 68– Sunday, January 16, 2011
WBC 2.61 / ANC 2.04 / Creatinine 0.9 / BUN 18 / Hemoglobin 9.5 / Platelets 88 / Magnesium 1.5
Today was a quiet day. Bill is tolerating the enteral feeding very well at 60ml per hour. Starting today he will ramp up to 75ml per hour in preparation for going home. The rate while home will be 85ml per hour the first night and then 100ml per hour for the remainder of the time Bill is on the feeding tube. At 100ml per hour Bill will be done with his feeding in 10 hours so he can disconnect prior to leaving for his daily visit to the BMT clinic.
Day 69 – Monday, January 17, 2011
WBC 2.58 / ANC 2.07 / Creatinine 0.9 / BUN 18 / Hemoglobin 9.8 / Platelets 94 / Magnesium 1.8
Today is our last day as an inpatient. Bill is tolerating the foscarnet and enteral feeding like a pro.
Day 70 – Tuesday, January 18, 2011
WBC 2.51 / ANC 2.26 / Creatinine 0.8 / BUN 19 / Hemoglobin 9.8 / Platelets 97 / Magnesium 1.5
All the plans were made. Bill would get his morning and evening dose of foscarnet while in the hospital and then starting Wednesday he would get the morning dose in the BMT clinic and I would do the evening dose. The enteral feeding food and supplies were to be delivered around 7:00pm with a home health nurse coming to do the training. Bill was discharged at 6:00pm. We met the nurse shortly after 7:00pm, the training went well and I did my first administration of enteral feeding.
Day 71 – Wednesday, January 19, 2011
WBC 3.27 / ANC 2.52 / Creatinine 0.8 / BUN 22 / Hemoglobin 10.6 / Platelets 128 / Magnesium 1.5
We went to the BMT clinic at 9:30am for the morning dose of foscarnet. Afterwards came home and got things ready for the medicine delivery and home health appointment for training. Bill had some soup for lunch and a small amount of gnocchi for dinner. The mouth and lips look great. Bill is still having pain from the esophagus.
I was happy when I saw the meds because they were the same delivery method as the Acyclovir IV was. Each dose is in a pressurized Homepump Eclipse. The enteral feeding and the foscarnet administration went well. Margy came this evening so I could leave in the morning to go to a seminar. Margy will stay Friday as well, since the seminar is two days.
Homepump Eclipse® Infusion System
The Homepump Eclipse Infusion System product line has the widest range of sizes and flow rates, making it an ideal choice for IV Antibiotic delivery. The market leader in elastomeric technology, Homepump Eclipse provides many benefits.
Features & Benefits
• Reduces nursing labor by reducing patient teaching time and cutting down on unscheduled nursing visits
• Compact size makes storage easier, both in the pharmacy and the patient’s home with easy disposal in standard "Sharps" containers
• Patented multi-layer elastomeric membrane, assures outstanding performance and reliability
• Easy for the patient to learn and use. Just attach to the IV access site and open the clamp
Sunday, January 2, 2011
Post #50 - Day 53 - Saturday, January 1, 2011 - Happy Birthday Michael Cosentino
The mornings are tough for Bill due to the lack of sleep during the night. The number of times he gets up is about the same. The urine continues to show small signs of improvement. We got to the infusion center at 10:30am for our daily liter of saline. We had Robert for our nurse this morning. Robert is one of our favorite at the BMT. He is soft spoken, gentle, compassionate and friendly. Since Bill has been Robert's patient before, Robert anticipates Bill's needs and brings the items that he knows Bill will request. Kudos to Robert!!!
The pain in the abdomen that Bill had the last few days seems to be gas. Now that he is eating a little his bowels are getting a work out. We will continue to monitor the pains for any changes.
This morning, Sunday, Bill mentioned that the sores in his mouth are not improving with the increased dose of Famvir. It seems they are coming back instead of getting better. If this continues he will not be able to eat again. We will discuss this with the nurse at the clinic this morning.
I try my hardest to make each post meaningful, informative and clear. Sometimes what I write is clear to me, but conveys a different message to the reader. My last post discussed the results of the bone marrow biopsy, that the test could not detect the disease. (I have edited the post to be less confusing). Although this is positive news, it does not mean the journey is over. The word "CURED" has not been used yet. We still have a very long road ahead of us. Bill has a minimum of another 46 days that he needs to remain in Tampa. The reason this is required is his immune system is young and immature the therefore his body is susceptible to various infections; viral, fungal, Bacterial. Bill has already had two viral infections and a touch of GVHD in his stomach. As you have read with the last fever, the BMT take them very serious. A fever that goes undetected, and untreated could be fatal. We take Bill's temperature at home several times a day. Once Bill is discharged from living in Tampa (day 100 we hope) he will still be under heavy precautions. He will need to avoid public settings, crowds, continue the food restrictions and stay away from anyone that has a cold or was near someone that had a cold. He will need to avoid anyone that has had a live vaccine for 6 weeks. We will require anyone that enters our home to use hand sanitizer and remove their shoes. He will continue to see the doctor in Titusville weekly and visit Moffitt on a regular basis. The one year mark is the first real milestone that we can truly celebrate and we will. The bone marrow biopsy done then will be a better indication of the future.
There are a few links to blogs by others, Under other TPLL blogs, that have had Bill's disease and are still on their journey. Max (TPLL support net) is in approximately month 15 post transplant and is doing great. His doctor just released him to travel from Buffalo to Florida, congrats to Max; and to Shirley for being a great caregiver. I can speak first hand and say that she had her work cut out for her and she did a great job. Mark (Curing Vancura) is in the second part of his first year post transplant. A month ago he spent a month in the hospital with pneumonia. The doctors have asked his sister to harvest more stem cells for a possible second transplant. We wish Mark well in this new year and nothing more than health and progress towards a non hospital/clinic existence. Please feel free to click on those links and read their blogs.
We are on the road to recovery, but as our doctor has said many times, "you will hit many bumps in the road and we will deal with each one as we hit them". We continue to stay positive and do what we are told to ensure that Bill continues on this positive journey.
Thanks for reading and please do provide feedback if something is not clear.
The mornings are tough for Bill due to the lack of sleep during the night. The number of times he gets up is about the same. The urine continues to show small signs of improvement. We got to the infusion center at 10:30am for our daily liter of saline. We had Robert for our nurse this morning. Robert is one of our favorite at the BMT. He is soft spoken, gentle, compassionate and friendly. Since Bill has been Robert's patient before, Robert anticipates Bill's needs and brings the items that he knows Bill will request. Kudos to Robert!!!
The pain in the abdomen that Bill had the last few days seems to be gas. Now that he is eating a little his bowels are getting a work out. We will continue to monitor the pains for any changes.
This morning, Sunday, Bill mentioned that the sores in his mouth are not improving with the increased dose of Famvir. It seems they are coming back instead of getting better. If this continues he will not be able to eat again. We will discuss this with the nurse at the clinic this morning.
I try my hardest to make each post meaningful, informative and clear. Sometimes what I write is clear to me, but conveys a different message to the reader. My last post discussed the results of the bone marrow biopsy, that the test could not detect the disease. (I have edited the post to be less confusing). Although this is positive news, it does not mean the journey is over. The word "CURED" has not been used yet. We still have a very long road ahead of us. Bill has a minimum of another 46 days that he needs to remain in Tampa. The reason this is required is his immune system is young and immature the therefore his body is susceptible to various infections; viral, fungal, Bacterial. Bill has already had two viral infections and a touch of GVHD in his stomach. As you have read with the last fever, the BMT take them very serious. A fever that goes undetected, and untreated could be fatal. We take Bill's temperature at home several times a day. Once Bill is discharged from living in Tampa (day 100 we hope) he will still be under heavy precautions. He will need to avoid public settings, crowds, continue the food restrictions and stay away from anyone that has a cold or was near someone that had a cold. He will need to avoid anyone that has had a live vaccine for 6 weeks. We will require anyone that enters our home to use hand sanitizer and remove their shoes. He will continue to see the doctor in Titusville weekly and visit Moffitt on a regular basis. The one year mark is the first real milestone that we can truly celebrate and we will. The bone marrow biopsy done then will be a better indication of the future.
There are a few links to blogs by others, Under other TPLL blogs, that have had Bill's disease and are still on their journey. Max (TPLL support net) is in approximately month 15 post transplant and is doing great. His doctor just released him to travel from Buffalo to Florida, congrats to Max; and to Shirley for being a great caregiver. I can speak first hand and say that she had her work cut out for her and she did a great job. Mark (Curing Vancura) is in the second part of his first year post transplant. A month ago he spent a month in the hospital with pneumonia. The doctors have asked his sister to harvest more stem cells for a possible second transplant. We wish Mark well in this new year and nothing more than health and progress towards a non hospital/clinic existence. Please feel free to click on those links and read their blogs.
We are on the road to recovery, but as our doctor has said many times, "you will hit many bumps in the road and we will deal with each one as we hit them". We continue to stay positive and do what we are told to ensure that Bill continues on this positive journey.
Thanks for reading and please do provide feedback if something is not clear.
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