Post #62

It has been a couple of months since my last update.  A lot has transpired so I will do my best to put it all in print.

The one year bone marrow biopsy results came back good.  The CD 33 is 100% donor, CD 3 is 97% donor and the bone marrow is 95% donor.  The only item that is still in the low range is the lymphocytes and specifically the CD4 T cell helper/inducer cells.  The current level is 0.034 and bottom end of the normal range is 2.0.  The Campath does a number on the lymphocytes and it could be a bit longer before they come back to the normal range.  In the mean while Bill will continue to stay on Bactrim and Acyclovir.

The thyroid issue has been brought under control with medication.  It took about two and a half months for the medicine to do its job and to get the correct dosing.  At the time it seemed like an eternity for the pills to take effect.

Bill and I took our first vacation in almost two years during the December holidays.  We went camping in the keys from December 23rd until January 2nd.   We camped out at the KOA at mile marker 20 in sugarloaf key.  The campground sites were a little tight but we managed to have a really great time.  Bill's son William (Billy) and his wife Johanna and their boys Adrian and Alex joined us for a few days.  We really enjoyed the beautiful blue water and the wonderful views.  While they were with us we rented a boat for half a day and had a wonderful time, Bill's grandson  Adrian did most of the driving.  Sookie (our dog) came for the boat ride as well. Bill and I had dinner at a wonderful restaurant called Manga Manga in Key West and would highly recommend it to anyone traveling to the Keys.

I did a 40 mile bicycle ride from mile marker 20 to zero and back to 20.  On the way back, 30 miles into the ride I had an accident with a women who was talking on her cell phone and did not see me.  Fortunately I was able to avoid her hitting me or me hitting her car.  Unfortunately I went down and broke the fall with my hands and fractured the radial head in my left elbow.

After three weeks in a cast and three and half weeks of physical therapy I am doing much better.  My first trip to the gym since the fall was last week.

After our vacation Bill was feeling great and started to do things around the house.  He is cooking again and I am in heaven.  He is the best cook in the world and I love what ever he makes. The last two weeks have been slow for him.  His strength has diminished a little and he has some fatigue.  His blood work showed lower platelets and lower hemoglobin which would explain the fatigue.  Two weeks ago Bill went and redid his blood work and the levels came up so hopefully he will start to have his strenght back.  The Platelets were 36.70 and the last test came back at 71.90.  Normal range is 161.00 and transfusion is required at 10.00.

Today was Bill's appointment at Moffitt.  First blood work and then an appointment with the doctor.  The doctor examined Bill and reviewed his blood work and then said "Bill is my miracle patient".  His nurse Denise said that her file on bill is bigger than any file she has on a patient that is five years plus post transplant.  He has been through the mill.  The next appointment will be in May when Bill gets his 18 month immunization.  The appointment after that will be three months later (November) when he will get his two year immunizations and have his next and most likely last bone marrow biopsy!!

Since November, Bill has had an appointment at Moffitt every other month and on the off month visits with the local oncologist.  The main reason he has the visit with the local oncologist is to get his power port flushed.  The port needs to be flushed every 30 days.  We are at a point where Bill can have the port removed as he really hasn't used it in a while.  At today's appointment the doctor indicated that he should have it removed when he is ready.

That is it for now.

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.

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!!!!!

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.

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

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.

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.

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.

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.

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.

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.