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.