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Posts (14)

Wed, Jun 5 6:37pm · Antibody Mediated Rejection-Liver, anyone else?? in Transplants

They still did not have the ultrasound report ready when we saw the doctor on Monday afternoon. Still waiting for either a message on the portal or a phone call if it is something to be concerned about. I am going with the no news is good news option at this point. I will be seeing Orthopedics on July 10 for my knee issues. They did have the x-ray report available and it showed diffuse degenerative arthritis in both of my knees, which was nothing really new that I didn't already know. I am most likely going to be having a knee replacement in the near future. After 30+ years of prednisone it is not a big surprise that I have significant arthritis. It's all about the trade-offs that we make as patients when it comes to our survival. I'll just be more like a cross between the bride of Frankenstein and the Bionic Woman by the time I'm done. LOL!

Tue, Jun 4 4:57pm · Antibody Mediated Rejection-Liver, anyone else?? in Transplants

I live in a small town in northern Minnesota. All of my transplants were done through Mayo in Rochester. The team has been very supportive throughout the years. I just happened to be one of the people that if there is a low percentage of it happening to someone, then that someone is usually me. I don't ever let it get to me. I have my favorites among the staff of the transplant clinics though and try my best to see them on a continuous basis so that I maintain continuity of care since that seems to be the best way to get good results rather than just drawing who happens to be in clinic at the time. Continuity of care is important for patients and especially those that have a more complex case.

Tue, Jun 4 12:15pm · Antibody Mediated Rejection-Liver, anyone else?? in Transplants

I have an awesome support system in my family and friends. They have been with me throughout this journey from the beginning and continue to be a source of support to me no matter what the next obstacle that gets thrown into my path may be. When I had my first transplant in 1995 I had a group of coworkers that sent me a banner that said "It's about damn time" and it was printed on YELLOW paper. They also threatened to send me Chutes and Ladders and Candyland as a joke to keep me entertained. My supervisor at the time sent me a little box that had four little fake onions in it with a card that read "You got the liver, so here's the onions."

As long as I maintain my sense of humor about the situation I can overcome anything. You should never lose your sense of humor. It is an important part of keeping up your spirits.

Wed, May 29 7:40pm · This and That and Talk - My Transplant in Transplants

I usually schedule my annual checkups in November/December depending on who is in the Transplant Clinic at the time. I have a strong preference as to who I will work with by this time since I have been around there for over 20 years now. I schedule the two together so that I only have to make one trip and also save on the cost for insurance purposes. There is no sense in wasting time or insurance money repeating tests that both transplant followups order. I am all about being a cost effective person when it comes to those resources.

Wed, May 29 5:49pm · Autoimmune hepatitis* in Autoimmune Diseases

I was diagnosed with AIH in 1985 at the age of 12. I was originally treated with 120 mg of prednisone and 60 of 6-MP that became known as Purinethol. I went through many periods of lulls and flares throughout my adolescence. I had an awesome pediatric hepatologist in Fargo that took charge of my care until I got to the point that I needed more comprehensive care than he could provide. I had splenorenal shunts done in 1993 at the University of Nebraska, which bought me a little over a year before needing to be put on the transplant list. I transferred my care to Mayo in January 1995 and received my first liver in April of 1995. I subsequently needed a second liver due to idiopathic reasons in 2006 when the first allograft failed. I received my second liver in May 2007. In 2009 I experienced antibody-mediated rejection and underwent plasmapheresis and IVIG therapy. In 2010 my kidneys failed due to the antirejection meds and in 2012 my mom was my living donor for my kidney transplant.

Wed, May 29 5:39pm · This and That and Talk - My Transplant in Transplants

My original diagnosis was AIH. I was diagnosed in 1985 at the age of 12.

I celebrated my 12-year liver transplant anniversary on May 8 (second liver). My kidney will be 7 years on November 16 this year.

Wed, May 29 5:35pm · Antibody Mediated Rejection-Liver, anyone else?? in Transplants

I was going only annually for followups, however, in December 2017 they found a questionable spot on the transplanted liver that after a CT scan and contrast-enhanced biopsy ended up being a hepatocellular carcinoma (HCC). Since that time I have gone back at more frequent intervals to make sure that it is not recurring and the area where it was removed with ablation in March of 2018 is remaining stable. I went back at 3-month intervals for the first 9 months and am now at 6-month intervals. I am returning for appointments this Monday, June 3 for the first of my 6-month interval followups. In addition, I am hoping to get in to see Orthopedics then instead of in July since I live 300 miles away. I ended up with a hemarthrosis (bleeding/blood clot) in my right knee. After all the years of prednisone I have basically no cartilage on one half of my right knee and about half of the cartilage left on the other side of said knee. Oh well, just another part of life for me. All there is to do is to keep moving forward and deal with the cards that we have been dealt.

Sun, Apr 14 8:21pm · Post liver transplant booklet in Transplants

I have my copy of the one from both my second liver transplant in 2007 and my kidney transplant in 2012. What part of the book are you looking for? The medication/weight/blood pressure/lab record keeping part or the part that talks about the transplant and the aftercare? I don't know if it has been updated since 2007, but I would be more than happy to make a copy for you and mail it to you. I am also on Facebook and you can send me a private message there if you are unable to get access any other way. (Charice Lind Mehring)