This and That and Talk - My Transplant

@amynewheart I am sorry to hear about the rejection problem, Amy. That must be very discouraging. I'm not a transplant recipient myself, so I'm not sure what "grade 2" means. If you care to share more, let us know what kind of symptoms you are having and how you are feeling. I'll be thinking and praying for you, please keep in touch with us. We want to support and encourage you as much as possible during this time. Teresa

@amynewheart, Amy, I am sorry to hear about your recent episodes of rejection. You are enduring a situation that, I believe, all of us recipients, fear. I cannot begin to imagine how frightening this must be for you. And with 3 hospitalizations on top of it.
Did they do any treatment in the hospital? And do you need to do anything during the wait for biopsy in August?
I am joining Teresa in saying a prayer for you.
Rosemary

I am sorry to be asking so many questions. and I invite any of our members who have experienced any similar situations with rejection episodes to add any helpful sharing about their experience.

@contentandwell, @2011panc, @chattykathy, @eileenheart, @doogie02, @lcamino, I hope you are doing well.
I am contacting you because you all have taken part in "This and That' discussion. And I know that all of you share a special connection because of our varying transplant interests.

I would like to make you aware of our new member @amynewheart, who is undergoing a rough period right now. I thought that perhaps one of you might have something to say from your own individual transplant experience that is relevant to her recent rejection episode.

@eileenheart, Do you have any thing to add from the perspective of a heart transplant recipient?
Rosemary

Hi @contentandwell - You might make a new and understanding friend with your phlebotomist. You can always "be busy" if you don't want to repeat the outing. Your choice because I do see your concerns.
Sorry about dropping the nephrology lingo. I keep forgetting there are people with all sorts of transplants on this chat. (That shows how self-focused I am at the moment with my health worries - yikes!). I am in ESRD (end stage renal disease) stage 4b. The national standard is to meet with a transplant team when your GFR is 20 (mine is 22). With my disease the standard loss of kidney function is 5 ml GFR per year however the past year I lost 7 ml.
So most likely I will be meeting with the Mayo transplant team some time in the next year. The only thing that might make it longer is God's grace with the assistance of the medication I'm on with the Mayo study. I am taking a medication (Tolvaptan) that is approved in Canada, the UK, Japan, and many other places except the U.S. They know it slows down the growth of the cysts on the kidneys but they want to see if it helps people with end stage renal disease. My hope is that it helps me but my goal is that it is approved so my 16 year old daughter will be able to take it once she turns 21 and then she might never need dialysis or a transplant, and if she does ideally she would be much older than 50 (55 is the average age for kidney failure for someone with PKD).
Back to your question...you meet with a transplant team with a GFR of 20 and get a transplant with a GFR of 15 if a living kidney donor is available. It is the goal of my nephrologist that I get a transplant before I go on dialysis because the success rate is much higher (8-10 years for a deceased kidney donor and 10-20 years for a living kidney donor). Also, a donated living kidney starts working right away. The wait list for a deceased kidney donor is 5-7 years where I live and I can't go on the list until my GFR is 15 so that would mean I would most likely be on dialysis before I got a deceased kidney donor.
My disease is a little different because people tend to lose kidney function at a somewhat predictable rate. Also, I might have my diseased kidneys removed at the time of the transplant. They are now both double the size they should be (healthy kidney is the size of your fist) and will keep growing. My dad, due to pain, had both his removed and EACH one weighed 15 lbs! EACH kidney was the size of a football! He went from looking 9 months pregnant to as slim as he was when he was a Marine. It was amazing!
Finally, a great thing about the Mayo is that they do paired donors so I do not need a donor to be a perfect match. If you have questions about how that works just let me know

P.S. I biked 24 miles today!

@lcamino Lynn, 24 miles is awesome! How long did that take. When I use my recumbent I recently have only been doing it for about 30 minutes because I don't do it much anymore -- not too many miles. That's all I can take, part of the problem is boredom though.

Don't even think about being self-focused, I think we all are. I think for me I am more now than before transplant because I am constantly in awe of how well I recovered and how good I feel. I have always been slightly religious but now much more so because I truly believe that the scores of people praying for me made a difference. Sometimes I have to stop myself because I don't people to think that I only talk about that and how grateful I am.

I can't help but worry about my niece's husband who has been on dialysis now for a number of years. My brother said that he is getting worse. He is still working full time though as a VP of a company in Missouri so he can apparently still do that.

I thought with paired donation that someone had to donate who was doing it in your behalf but who could not donate to you, and in return someone who could donate to you could do it in their behalf.

JK

@amynewheart Amy I wish I could offer some words of wisdom to you but I can only say some prayers. I really know nothing about heart transplants. My liver transplant surgeon tells me not to worry, if I have rejection they can take care of it. I hope he telling the truth and not just trying to put my mind at ease.
JK

@contentandwell - I get it. My extended family live on the east coast so I'm somewhat familiar with the area. My Mom lives near me now so I'm not out east much anymore.

While in the hospital for first rejection episode which was a 3b (Severe rejection in multiple areas of the heart and starting to actually damage heart muscle) I was give three doses of IV steroids (1 gram each), i then received three days of a medication called atgam which totally brings your immune system down to zero. The second and third hospitalization just received the three doses of IV steroids. and of course they increased my home dose of prednisone and added methotrexate. Definitely frustrating but try to stay positive knowing the sacrifice that was made for me to get new heart. Thank you for your prayers!
Amy

@amynewheart Amy, thanks for the additional information. It sounds as if your transplant team is working hard on your behalf. We continue to wish you well! Stay strong, Teresa

I have been told by my transplant doctor and coordinator that I am "Special" lol normally the steroids will take care of any rejection so your surgeon is correct 🙂 My doctor jokes and tells me i forgot to read the book on how my body was supposed to react! Thank you for your prayers!