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.
