We went to Duke on Thursday for a monthly check in while on treatment. Ray has been on interferon and ribavirin for 3 months now. The next step would be to introduce the 3rd medication which is the Teleprevir, however his hemoglobin (red blood cell count) has been very low. Duke's biggest concern with starting the next phase would be bottoming out Rays hemoglobin- that would be 8 or below. If that happens he would need a transfusion and also runs a high risk of heart attack and stroke. If his hemoglobin bottoms out he would have to stop the treatment all together and would not be able to resume.
There are several options right now. Dr. Smith has written clinical trial coordinators to see if Ray would be a potential for a clinical trial that is coming to Duke (another new medication). Rays Dr. is unsure if he will even be a candidate because he is a retransplantee and his kidney function is low.
Regardless of what happens within the next several weeks they do want to biopsy Rays liver to see how it is responding to treatment. Is there less scarring, the same, does it look "less angry" then they last biopsy.
Another avenue would to be to stop treatment all together and wait for the next thing to come out. Lets Rays blood cells and body recuperate and hope he can wait for the next drug. How long that could be? unknown.
Third- get his blood cells up as high as we can with the help of Procrit....they are slowly creeping up and try introducing the third medication knowing that if his kidneys or red blood cells treatment would have to stop and he runs risks associated with that. Since the second transplant Rays kidney numbers run between 1.7-2.0....this means his kidneys function between 45-60% efficiency. His red blood cells (hemoglobin) once on treatment have been as high as 12.3 but as low as 8.1. Two of his three liver numbers are down almost right outside normal range- which certainly tells us the treatment is doing something hep C and liver wise. The biopsy will tell more. His hemoglobin on Monday the 8th was 9.4, it's got to come up more to even consider the 3rd treatment.
Basically that is where we are right now....not very clear. I prayed in church today that Ray and I would continue to be faithful and trusting in Gods plan. Trusting that it isn't up to US or DUKE but that God will provide us a clear answer as to what to do next- he is in control- he will decide- he will lead us and the Duke doctors down the path HE has chosen. This is where it is hard, when medicine, science and FAITH have trouble overlapping. Ray is pretty bummed. He was ready to go ahead and start the 3rd medication. Ray is a risk taker and I believe if given the opportunity he is going to want to try the 3rd medicine and see what happens, praying for a positive outcome. I know that Ray feels like this treatment is his "silver bullet" to rid his body of hep C and stop all the insanity of illness and being sick. I also know that he wants to return to work and is very concerned about that. Each day that passes that he doesn't begin the next treatment is a day marked off his "calendar of work" and saving his job and position. I believe he is having some times of depression, anger and hurt recently- he can use ANY and all encouragement, calls and PRAYERS on a daily basis- not only for his physical health but mental and spiritual.
So now what? We just wait and PRAY. Pray very specifically for God to provide us a very clear answer as to what he wants us to do next and for us to TRUST. I pray that Ray will continue to strengthen Ray and regenerate his red blood cells. I pray that God heals Rays kidneys and that they are able to tolerate treatment. I pray that if it is his will for Ray to begin this 3rd treatment that he will take care of the rest- he will keep Ray safe, he will protect his kidneys, he will keep his red blood cells up. HE is the great physician and I DO know that HE can do anything. I WILL pray specifically for those things. I know that God hears our thoughts, fears and cries of "we need something to work, we need Ray to be healed of this horrible virus". So I ask that YOU PRAY specifically for us to....if you know others who pray forward this on to them and ask them to pray that God will show us his will and that it will be done in Ray. Are we scared, yes...is this uncertainty tough to bear, yes....but I just have to keep trusting and believing that it is all for something and worth something and that God isn't done with Ray yet.
Will update you again when we learn more- hopefully sometime this week.
Ray and Janet Brooks
*On a happy note- Ray celebrated his 41st birthday this week and DIDN'T feel terrible this week from treatment. Saturday night we were able to go out and celebrate with dinner at Moes, went to bowl and Riley lost her first tooth! Pretty fun and exciting night
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