My husband had a liver transplant 2002 and has just completed 12 weeks of incevik. Now he is hep c free and to stay on ribavirin/interferon therapy for 48 weeks. During the 12 weeks he experienced low grade fevers, night sweats and other syptoms. With 5 days left of incevik he started running high fevers over 101 up to 103, our docs told us to head for the local emergency room. After 4 days of broad specturm antibotics (several different ones), lumbar punch, blood cultures, iv antihistamines and morphine they sent him home without answers
The docs that started therapy said it was just the meds and if it happens again (fevers 101) go to the ER. He had his full annual post transplant check up beginning of this week and all was well. Took the last dose of incevik on Wednesday and was feeling much better. Yesterday he started tanking again. Well, here we are again with fevers spiking at 103 during the night. I have read many post referring to fevers but I am wondering how high is the "norm" for people on therapy.
Low grade fever running 99 to 101 seems to be the norm at times during treatment..... A temp of 103 is not. As for people with TP, somebody like OH here might be able to give you more info......... Best to you.
He tried rib/int treatment pre-tranplant but could not stay the course low platelet etc. Remember this was way back in drug years 2001. Maybe a year or so post tp tried rib/int therapy again but could not tolerate the therapy, but was responding. One of the doc's told us later he thought the short amount of time he was on the therapy (not longer than 3 weeks) seemed to have reduced the inflammation a substantial amount. Enough to keep hanging out waiting for "new drug that's coming" because at this point the new liver has inflammation and scarring,
He started triple therapy November 15, in the first week his viral load went from 6 million to 3 thousand. By the end of 4 weeks he was undetectable at local lab and under 78 at the clinic. Week 5 or so clear and holding since!
He has not worked since beginning therapy but on several occasions he played golf. This pretty much put him down the next day but that's what he wanted and was able to do.
We know there are at least 6 others post transplant on triple therapy here. I do one of the others discontinued because of rash. The doc's and nurses aren't forthcoming with information on others. No not heppa stuff just weird we aren't telling stuff.
So......everything was great until it wasn't. Two weeks ago he started running high fevers.
Wow, congrats to you! Husband is genotype 1 and treated at Mayo Clinic, Jacksonville, FL .
Not sure what is going on with the trial... hate to pass a negative thought here, but he/we do not have access to the docs as we did in the past. The nurse coordinators are the gate keepers, haven't seen a doc since he started therapy. And trust me we have tried.
Where did your husband get his transplant? My hubby was transplanted at Mass General Hospital in Boston Jan 7,2010. His viral rose to 15 million and his AST levels rose to above 300 in May 2010. He was non responsive with Pegasys and Ribo pre transplant and started the double Tx again in May 2010. His VL dropped to 1.2 mil over a course of 18 months of that double TX. He liver enzymes lowered, but his biopsy showed stage 3 fibrosis in June 2011. We decided to try to get the triple therapy TX, but Mass General would not prescribe it. They are not treating any post transplant patients with triple TX, so we were referred to the Mayo Clinic in Phoenix, Dr. Hugo Vargus. We live in Vermont and made the apt in Phoenix and traveled to Phoenix and were told at our first apt that they had never treated anyone post transplant that they had not transplanted and so my husbands case would have to be reviewed by the team at their next meeting, which was the following day (March 14 wed.) We were told they would call us with the decision. We both walked out of the apt in a state of confusion! We had just traveled over 2300 miles to be told they had to have a meeting to decide if they could take my husband as a patient! Why the hell did they wait for us to get there to tell us that!!!??? So here we are in AZ, Friday March 16, 2 pm, no call yet, so I call the office to find out if they have an answer for us, and I was told they would give Dr. Cary a message to find out what the transplant team decided. 25 minutes later get a call and they are sorry, but after our case was presented to the team, they decided not to take my husband as a patient to treat. The suggestion was to go back to Mass General and be treated there! Go figure.....we told they and Mass General told them, they are not treating post transplant patients with triple TX. This whole thing is like bizzaro world! Mayo Clinic Phoenix is a big joke! Oh and my husbands file at the Mayo Clinic that the MA carried under her arm when she was weighing my husband and then bringing him to the appointment room, was at least 5 inches thick as I had all his records forwarded to him Mayo from Mass General. So Mayo knew everything there was to know about him back in December!
So, the main point of my posting to you, is that at our appointment on Tuesday, after my husband said to her, what choices do I have.... she thought that maybe the Mayo Clinic in Jacksonville were treating with the triple therapy TX. So when I saw that is where you folks are going, I thought I would inquire about it from you. Even tho, I don't really trust the Mayo Clinic very much right now . . .
We are not trying to figure out if we should continue to look for another clinic to help us with treatment, or if all places will turn him away as he was transplanted there? Are all the clinics the same and don't want to take on other clinics transplanted patients? This is just confusing to me...
We are traveling in our RV, so we can stay anywhere as long as we need to. If anyone has any information for us, please let me know. Thanks, Allison and Gary
Thank you so much for your information, as a matter of fact, U of C was one of the hospitals that came up on my triple therapy search online. My husband and I are having a hard time making our next plan. We are in Tucson, so we are going to check out the treatments available here at the U of A medical hospital. I did talk to them on the phone late yesterday afternoon and a transplant coordinator is supposed to call us back Monday morning. We'll see . . . lol.
Have you had a transplant? If so where? and can you tell me what your history of TX is? We are trying to figure out if working so hard for the triple TX is worth it or not. Gary's last biopsy in June 2011 showed stage 3 fibrosis. He does not seem to have any ascites yet, no encephalopathy (thank god, been there done that pre transplant!), no tarry stools, not bleeding varisies, but his blood counts are low WB is 3.9 and RB is 4.1, platelets 85, Crit 41, hemoglobin 13, BUN is 31, alk phosphates 160, ALT 70 AST 63, Albumin 3.9, creatinine 1.0, & his viral load is 18 million.
If anyone has any input on our situation, please let me know . . . we need all the help we can get right now to figure out what to do next????
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