Post #64 - Happy 2 year Birthday Bill!!!

It is hard to believe it was two years ago today that Bill received his bone marrow transplant.  It is wonderful that Bill is doing well.   Two years is a major milestone, wishing you many more healthy years!!!

Love Mike

Post # 63 - Bill is doing really well!!

The frequency of my posts have been less and less and that is because I don't have a lot to report.   There is not a lot of information out there on success after transplant when dealing with T-PLL.  We do know that several of the blogs that we followed as we started on this journey are no longer updated. Bill and I talked this morning and agreed that we would continue to keep this blog up to date as long as we are able to.  So our commitment to you is that we will blog several times a year to provide updates post transplant.

Since our last post several milestones have been reached.  

 

First, on March 29th Bill had his power port removed.  Similar to having the feeding tube removed, there was apprehension.  The power port was a life line that was there for him in his time of need.  As with all disease, especially cancer, you go on that emotional roller-coaster of am I really done or will I need the port again.  The procedure to remove the port was done in the doctors office and I was allowed to be in the room with him.  The doctor offered the port to us to keep, I opted to take the picture below. 

 

Second, during our visit to Moffitt on Wednesday May 30th Bill was taken off of the remaining medications that he was taking post transplant,  Bactrim and Acyclovir.  The doctor believes that his immune system is getting stronger and he is ready.  Bill also received his 18 month immunizations.  Since Bill is doing so well, our next visit was scheduled for August.   The August visit went well and the next visit was scheduled for November.  The November visit is Bill's two year anniversary post transplant.  He will have his last bone marrow biopsy.

By all accounts Bill looks great and one would never be able to tell that he was sick, he is getting stronger and is trying to do more and more.

The Sunday before Labor Day, we had Bill's sister Margy and her husband Gary, along with friends Mary Ann, Wendy and Scott over for a BBQ.  We had a really nice visit with every one, laughing a lot.  After our guests left Bill mentioned that he felt like he had a fever.  We pulled out the handy dandy thermometer and took his temperature to find out that he had around 100.6  Being Sunday and Monday a holiday we figured we would monitor his condition and call the Dr on Tuesday if necessary.  Through Tuesday morning  his temperature remained between 100 and 102.  We agreed we  should call the doctor but could not figure out which doctor to call.  Should we call Bill's  bone marrow doctor in Tampa, his local oncologist in town or his primary care doctor in town.  For the first time I felt the panic of a new parent with a sick infant and confused on who to call.  During treatment and post transplant we were taught that a fever of 100.6 meant a trip to the emergency room.  I called Moffitt first and left a message, then called the local oncologist and left a message.  Bill decided instead of waiting for a response he would go to the local urgent care.  He was given a flu test which came back negative so they put him on antibiotics and sent him home.  I got a call from Moffitt and they said to see the local oncologist and the local oncologist said to see our primary.     Since Bill had an appointment for his primary doctor on Thursday we figured we would give the antibiotics a chance to work and go to the appointment on Thursday.  From Tuesday to Thursday the fever did not subside and Bill was starting not to eat, was getting weak and developed a cough with no production.  

 

Thursday finally came around and the primary doctor examined Bill and took him off of the antibiotic that the urgent care put him on and gave him two new antibiotics with the instructions that he should go to the emergency room on Friday if the fever does not break.  The doctor also gave Bill a script for a chest x-ray and blood work which Bill had done on Thursday.  Friday afternoon we got the results of the blood work and chest x-ray and the x-ray showed interstitial pneumonia in both lungs and blood work showed elevated white blood cell counts.  By the afternoon the fever was still running around 101 so we decided Bill should get to the emergency room before the week-end began in case he needed testing.  Bill was admitted to the hospital from the emergency room and put on IV antibiotics.  At this point his fever was running between 101 and 104.  The nurse gave Bill Tylenol to bring down the fever and a cooling blanket to reduce his body temperature.  

On Saturday we were talking with the nurse and showed her a picture of Sookie and told her how much Bill missed her only to find out that the hospital had a pet policy.  We were both very surprised and excited that Bill would be able to see the dog.  What was most surprising is that I work at the hospital and I didn't know we had a policy.  One of my employees who has worked at the hospital for over 30 years didn't know either.  In order to bring in the dog several things needed to happen:  Dr. approval, a bath for the dog, papers showing all shots are up to date and approval by security.  That afternoon Sookie came to visit.  She immediately greeted Bill and then became his protector.  Anyone walking into the room was barked at and if they tried to get near Bill she guarded him.  I brought the dog every day.  It was funny to see a dog in the hospital bed with the patient.  My hospital is progressive and understands the healing powers of an animal, especially a personal pet.

On Sunday we asked to have the infectious disease doctor get involved as well as a pulmonoligist.   The infectious disease doctor tested the blood for every virus possible only to get negative results on all the tests.  

Getting back to the story, on Tuesday I called Moffitt to let them know what was going on as I wanted them to be in the loop, hoping that they might be able to provide guidance from a transplant perspective.   Within a few hours Dr. Ayala called me back personally.  He was very concerned and said Bill should have a broncoscopy.  He also said he would assist with getting him transferred to Moffitt if needed.  I finally felt like things were moving in the right direction to find a solution.  Wednesday Bill had a broncoscopy and a biopsy was done to see if they could figure out what was happening.   There was mention that if everything came back negative Bill might need an open lung biopsy, we are grateful that was never necessary.  Thursday the initial biopsy came back negative, the culture was going to take up to six weeks to grow.  I asked the pulmonoligst if what Bill is dealing with could be life threatening and he said yes.  

 

On Thursday it was decided that Bill should be moved to Moffitt and at 6:00pm he was taken by ambulance (as a precaution) and admitted there.  Friday morning I dropped Sookie and Tweedy off with Scott and Wendy and headed to Moffitt for an extended stay. 

 

I must recognize the blessing that Scott and Wendy have been throughout this entire journey.  Words cannot express our gratitude.

When I got to Moffitt I parked the car, went up to the unit and washed my hands before entering.  At that moment I had a flood of emotions where I was lost and not sure of what the next step was. Although everything was familiar I was confused.  I walked in to see Bill and said this all feels very strange.  Last time we were here we were mentally prepared to be here, this time I am not prepared. 

On Friday, Moffitt put in a pic line for blood draws and IV treatments.  I stayed in the room with Bill on the pull out couch like I did the first time around.   The doctor put Bill on an antibiotic called Meripenim, by Sunday morning the fever Bill had for two weeks finally broke.  Sunday evening Bill asked me to go home since there was nothing more that I could do.  Now that the fever broke they were going to observe him for a few more days and then send him home, so I went home.

The fever never came back so Tuesday they decided Bill would be discharged on Wednesday afternoon. At 3:00pm I left work and went to Tampa to pick Bill up and bring him home.

As of this posting Bill is getting stronger and feels good.  

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.