Yesterday we ventured to DUKE in the cold and rain!! Our appointment was good and provided us with a lot of information. Information we will read through and educate ourselves on to be ready for Ray to begin HEP C. treatment. It seems as though he will begin treatment by the end of April. The only cause of the spike of liver numbers seems to be the hep C. The good news was that the steady incline of liver numbers that has been happening over the past several months took a DECLINE in yesterdays lab work. No rhyme or reason, it just did (the power of prayer and the lord)!! The plan with viral therapy (hep C treatment) is this. 4-6 weeks of peg interferon and ribavirin combined. After that continue those two (which Ray has taken before) BUT then introduce the new drug TELEPREVIR for 12 weeks. At the end of the 12 weeks of teleprevir he will come off that drug but continue ribavirin and peg interferon for an additional 36 weeks. A total of 48-52 weeks of treatment. There will be many side effects we will have to watch for- one most important how Rays kidneys tolerate all of this because ribavirin is processed through kidneys and since the 2nd transplant Rays kidneys have struggled, sluggish. With the teleprevir is is s stick regiment...you take it 3 times a day on a strict 8 hour schedule and you have to take it with 20grams or more of far to process it (that is where our research and education has to take place of WHAT to serve Ray). The side effects are terrible: flu like symptoms, anemia, muscle pain headache, diarrhea (severe), wbc and platelet changes, depression, etc....in the past Ray has had pretty severe flu like symptoms on the 2-3 days following the intereferon shot (which you only have to do once a week). Yesterday Dr. Smith told us of a patient who had pretty profound depression and had to extend his first few weeks of treatment to 12 weeks before introducing the teleprevir.
It will MOST DEFINETLY be a process but the end result will be OH SO WORTH IT AND OH SO SWEET if it works....HEP C FREE! Duke has dealth with a few cases now post transplant with Rays genotype and one they told us about his hep C numbers plummeted right after starting the teleprevir treatment into the mix. The other the hep C is undetectable in his blood anymore. That is our hope, that will be our PRAYER over the course of the 52 weeks of treatment. I believe God has a plan for Ray, I don't think he would have brought him this far, through all the hurdles he has overcome to not see this to the end.
We did talk in detail with the doctor yesterday and he did agree that with the last surgery ending up being so risky and enduring that a third transplant would not be in the cards for Ray, they wouldn't even consider the idea more that likely. This needs to be our silver bullet and if it isn't we need it to get Ray far enough along to stay healthy until the next medication which is in clinical trials now comes down the line.
All in all our visit was good, we have a plan, just waiting to work out all the kinks...insurance approval, talking with Rays HR at Ecolab, start date, educating outselves, etc....
The BEST part of yesterday. I had FINALLY finished our donor letter and took it yesterday to give to our transplant coordinator who then sends it to Carolina Donor Services to send to the family. Once they receive it and choose to write back then the lines of communication can be open between us. We wrote the first family, they accepted our letter but never responded. Anyways before I could give her our letter.....she had a letter for us. The donor family had already written to us and they letter was there yesterday. It was a 3 page hand written letter from the donors father- the donor was a 16 year old male. It was a very touching letter to which he did tell Ray to "live each day to the fullest and how knowing that his son helped so many brought them a sense of peace". Ray was SUPER excited to receive it and read it. I told Ray that receiving the letter on the DAY we learned about him starting treatment....that was a "God thing"...I believe that is God telling Ray "still right here with ya and its gonna be ok!"
I will update you when we know when he will begin treatment, etc....there will be lots to pray for but mainly just that Ray can tolerate treatment, that his kidneys can hang in there during treatment and that his physical, mental and spiritual state can stay lifted and positive during treatment.
Thank you all for the continued support, prayers, friendship, emails and calls....we CANNOT do this alone!
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