We just passed our 3 year transplant anniversary on Easter Sunday and we are heading to VCU on Sunday to check into the hospitality house and get ready for a near week of lab and doctor appointments while they bring Kurt off the Teleprevir. His 12 weeks will be done~! They will keep him there so they can adjust his immuneo suppressant drugs as they wean him off the Teleprevir. We don't want any issues with rejection. I ask those of you who will, to pray for him next week as this process entails.
March 26, 2012
We met with Dr. Stravitz Monday as Kurt started week 10 of the triple tx. All levels look good and they do not want to see us back for another 3 weeks. At that time we will check into the hospitality house because they will be weaning Kurt OFF the Teleprevir over the course of several days and want to keep an eye on him so there are no complications. YAY! Finally will be off the third drug and the doctor said Kurt WILL feel better, though, Kurt says, it's the interferon that he's looking forward to getting off. The doctor said that they are really having breakthroughs with the interferonLESS treatments. Too bad Kurt couldn't have waited for them to get those treatments down pat, but, it is what it is and we are grateful that this triple tx is doing what it's suppose to do!
March 20, 2012
Kurt started week 9 of triple tx with Incevik. He feels bad, but doesn't complain much. I just look at him and my heart hurts for him. He is working 40 hour work week and even though it's "light duty" by the end of the week he is wore out and then it's time for another interferon shot :( He says he can't look too far ahead because it is overwhelming, so he stays focused on doing one thing at a time, one day at a time and here he is at week 9. Three more to go of the telepravir and then the doctors will stop that drug. Hopefully, it will bring some relief to him to be off it.
He's got a good routine down to help him. Up for first round of immuneo and treatment drugs at 7am with breakfast. (making sure he has at least 20 grams of fat with this meal as he is taking the telepravir along with everything else.) He rests for about 40 minutes while he digests and gets his thoughts ready for the day. Sometimes he reads his bible, sometimes he just listens to some uplifting music, sometimes he naps. I get his clothes ready while he is resting. We found that if he is better prepared and not looking for matching socks or that special shirt he has more time to prepare mentally for the day. A shower, a walk in the garden with our little Zoe girl and then he is off to work with a wave and a smile.
For lunch he will come home where he is also able to close his eyes for a few minutes and refocus. We are fortunate he works only a couple miles from home. He will take his 3:00 meds at work, along with an avacado or cheese and crackers as this snack requires another 20 grams of fat.
When he gets home from work he usually goes to bed for a bit before dinner. He has another round of meds at 7pm and then the telepravir at 11pm. That's how we're rolling with the schedule right now. It works for us. One thing we have laughed about is the fact that since I got laid off in November (the same month Kurt started treatment) it has worked to his advantage with me being so available to help him. Still, I sure wish Publisher's Clearinghouse would hurry up and come with my big check to pick up the slack :)
March 13, 2012
Kurt started week 8 of Incevik (Telepravir) and at his clinic appointment today was told his labs indicate no changes from last appointment. This is good news as the triple treatment is still working! However, we learned that even though he finishes the Incevik in four more weeks (it's a 12 week protocol) he will continue to take the peg/riba treatment until November. He was very disappointed to learn that as the interferon makes him feel like he has the flu all the time. But, we know we can't complain too much, because the treatment IS working! So, won't complain, just report and continue on continuing on :)
March 6, 2012
Kurt went back to work today. Dr. says light duty only for now. He has been on sick leave since starting the treatment in hopes he would have the majority of it done before returning to work. Because there was a delay of about a month in starting him on the Incevik, that wasn't the case. So, though still easily fatigued and experiencing body aches as side effects of the treatment, he has been able to "push" through and get a full day's work in. This excited him very much, feeling like a big mile stone was passed. We are more than half way through the triple tx.
MARCH 2, 2012
Week 6 on the teleprevir and got our second RNA report indicating negative viral load!!! Dr. Stravitz's exact words..."AMAZING!" He said whatever we are doing, keep doing it. When we said "prayer and faith!" he said "keep believing because it's working!" Wow, so good to hear the docs so excited. In fact, we were asked to get the word out to the media so others would know there is hope in this treatment.
WTKR news 3, (the news team with heart) interviewed us on Wednesday and put it on the local news two days in a row. The local Smithfield Times paper interview was today. We are so thankful to not only be recipients of this breakthrough treatment and want others to know of it's availability.
FEBRUARY 8, 2012
Kurt started the protocol in November with interferon/ribavirin therapy and Telaprevir was added 3 weeks ago. We stayed in Hospitality House to go to daily labs at VCU for a week. They monitored Kurt closely. We return weekly for labs and doctor visit to make sure Kurt's levels are acceptable. Side affects are taking their toll, fatique, aches, trouble sleeping, etc. but nothing he can't "push through" he says. In fact, some of the more serious sides he has not had and the doctor is very optimistic about that. Now for the GOOD news......Kurt's labs results on Monday was that the telaprevir is already doing it's job and there is no evidence of the Hep C virus in his system. Zero, negative! Dr. Stravitz was elated saying that what normally takes longer to happen, with Kurt has already and that is a great indicator that he will be a responder to this drug regiment. For now, he continues with protocol, 12 total weeks of telaprevir continuing the interferon/ribavirin afterwards. So it's not over yet, but at the end of treatment and after 6 months they re-test Kurt, if he is negative virus, then he is officially cured! Amazing! We are so humbled by God's goodness, His connectiions, His timing. We were told in 2011 that the virus was aggressively attacking Kurts new liver and already there was fibrosis. They gave him about a 2 year window before his liver would be failing. This new drug therapy was just FDA approved in May 2011, but, it hadn't been used on post transplant patients, only pre-transplant patients who were healthy enough to undergo the hard hitting drugs. God brought so many factors together for Kurt to even be considered for this therapy. We are so thankful.
Side affects from triple tx so far: fatigue, (Kurt sleeps A LOT) body aches all over, brain fog (not able to concentrate) anxiety, runny nose. ALL side affects except fatigue and body aches were gone within the second month. Kurt has learned when to schedule his rest and to take it when he has to. He rarely has to take a Tylenol for body aches but says, he still feels them.