I was just over 3 yr. anniversary and went into acute severe rejection. Treated with multiple high doses of solumedrol then finally thymo globulin. Almost one week out now from this three-week treatment and hospitalization.
Numbers have risen slightly (bili 9.3 to 11.4 latest). Feeling better. but still won't know finally if it worked or need to be relisted for 4 weeks.
Does anyone have experience like this? It is apparently unusual. I was on only 0.5 Prograf twice a day and my blood levels were around 5. Only missed 1 pill in the last year.
I have alteady had the work-up to be relisted. Does anyone know the criteria for a 2nd transplant?
How long a wait with a high MELD? I pray that my liver heals itself..so do the docs. My only symptom was a slight yellowing of the eyes; later the skin and then abdomen swelling. Currently swelling is going away. I take that God is at work now...
Ron - I had almost the exact thing happen. I was transplanted with liver 11/23/09 and was doing fine. My meds had been weaned down to only Rapamune 2mg daily. I went in for a monthly blood draw and at the 11 month post-tx my numbers had tripled but I really didn't have any symptoms - a bit tired and not feeling as good but never would have suspected this. I was put directly into the hospital and a liver biopsy was done. I went thru 3 weeks of 1000mg Solumedrol IV daily and as they tried to wean it out each time, the liver numbers would jump right back up. I was then put into intensive care for 5 days and given Thymoglobulin - this worked. My Surgeon said that my immune system was just "too healthy". It has been a year now and I am just now getting over all of this. Thymoglbulin was very hard on my body. I am being evaluated for a kidney transplant now as the Prograf in addition to Polycystic Kidney disease has left me with on 16% kidney function...so here we go again! My liver numbers are great and have been for many months now. I have had trouble with getting my WBC's to rebound - they run between 1.0 - 1.8 (safe is in the 3-5 zone for tx patients) I had a bone marrow biopsy done and the Hematologist believes that it is a side effect of the Thymo and in time will repair itself. Good luck - Praying for you that the Thymo turns your rejection around permanently!
Hi Teresa! Thank you for replying to my post. My treatment is hopefully working with my bili down to 7.5 last Thursday. The other numbers look great, according to my Coordinator. I pray the trend continues.
Hopefully your kidney function will improve and you can move on past this event. I know it can be a very lonely feeling, but with the help from others who have similar experiences, we can face the future with a bright outlook.
Hang in there! I think we'll be around for a long, long time!
Hi Teresa! Just checking on you.... How are your numbers now? My treatment seemed to have worked, although I am on a higher dose of Tacrolimus (1mg in morning, 1/2 evening) and 500 mg Cellcept twice a day. Prenisone is 5 mg/day now. Last Friday my Bili was 2.0 with AST/ALT normal. Taking insulin now for diabetes (hopefully caused by prednisone). Back to about where I was before this rejection, although my memory is slightly impaired. I pray that this turns around as well. Hope things are better for you, too.
Ron am doing pretty well. I actually had a kidney transplant 4 short weeks ago and am recuperating nicely from that. My best friend of 34 years stepped forward immediately, was tested and found to be a match and we moved forward with the transplant on May 14, 2012. My liver numbers have been excellent, WBC still very low 1.3, and Hhgb 9.3, platelets 61. Praying that with this healthy kidney in place the rest of my body will be allowed to repair post thymoglobulin. Taking one day at a time and feeling much better. Of course I am back on higher levels of immunos = Prograf 3//3, Myfortic 180mg BID, and Prednisone 5mg BID - these will be weaned down eventually - just riding the tide of side effects! Hope all is well with you! Life is so precious - reminded of that daily! Teresa ;o)
That's great news! Hang in there and always remember, stop and smell the roses. This is not a dress rehearsal! Enjoy your life.
Ron- I went into rejection around my one year anniversary for my pancreas. I did a 2 week treatment, high dose of steroids, and was put on oral meds for my diabetes to let my pancreas. But about a month in after that I went into server rejection and my pancreas failed. They couldn't repeat the treatment again because it increase my chances of getting cancer. I've been back on the waiting list for almost 2 months, the doctor had to wait and relist me because my donor pancreas was swelled really bad and put me at a high risk of rejecting the next pancreas I get. I hope all works out for you.
As well for you, too. For me, so far so good. I'm feeling good and working out daily. A little fatigued and forgetful, though.