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This and That and Talk - My Transplant
Transplants | Last Active: Feb 14, 2023 | Replies (1670)Comment receiving replies
@athenalee This really is all so fascinating…all the transplants!
You will be on Tacro and Mycophenolate the rest of your life or some form of immunosuppressant. From spending time with you on this forum I know you enjoy being educated. 😉 So here’s the difference between your transplant and mine, besides the obvious of organ vs marrow cells.
Basically, in a very large nut shell, the immune system controls ‘space invaders’ in our bodies. It’s an incredibly powerful force. In your case, with a new organ, your immune system sees your new liver as the invader. It will forever be wanting to protect your body from that liver, even though the liver is vital to your health! 😉 Meds help those two play well together by keeping your immune system suppressed.
In my case, my body is the enemy. I received an entirely new immune system via the stem cells of an anonymous 20 year old male donor who matched my HLA 10/10. Which is awesome.
It is now the most powerful entity in my body and sees my body as the invader. Given free reign, the T and B cells will launch an attack against me wherever it sees a threat and can be life threatening…every organ, skin, eyes, lungs, gut, etc… So I’m on Tacrolimus to hold it back a little. Gradually backed down from 7mg daily to .5mg. However, at some point, because the immune system has memory, it will begin recognizing my body as a non-threatening host and eventually settles down. We’re almost there!
Most marrow transplant patients aren’t on Tacro at the 2 year mark like I am. They’re off much sooner. I don’t know my donor but he is a mighty force. Haha as we joke at our house, “The force is strong with this one.”
The goal with the new immune system is to help me prevent Acute Myeloid Leukemia from returning. My old system failed to recognize the cancer cells and destroy them. The new system will and in fact has! I had an event last summer that my team feels was a Graft vs Leukemia situation and it stopped a relapse!! Yes! Fist pump!
Fun facts, I have 100% donor DNA/0% mine. I also have his blood type and male chromosomes! If you take DNA from a mouth swab, I’m still me. If DNA is taken from blood, I’m someone completely different. A chimera! The perfect crime novel in the works…
Oops, yes, and for that reason because your immune system is weakened with meds, you’ll do best with wearing a mask during flu season and inside with groups. It will be for me as well…forever. ☺️
Replies to "@athenalee This really is all so fascinating…all the transplants! You will be on Tacro and Mycophenolate..."
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Indeed fascinating! Thank you for such a great science lesson! And, congratulations on your new immune system fighting off leukemia.
Bodies are such a puzzle. My liver cirrhosis was caused by an autoimmune disease that attacked my bile ducts with antinuclear antibodies. Now, post transplant I have come down with Sjogren’s Syndrome which has brought on neuropathy in all my extremities and severe muscle and joint pain.
None of my providers has offered a reason for why it’s come on so rapidly after transplant or sadly any course of treatment other than Gabapentin for the nerve pain. So, I’m doing loads of research into RA autoimmune diseases and neuropathy. What I’ve found for Sjogren’s treatments are largely for symptoms. A couple of treatments for RA may be beneficial, including Mycophenolate which I’m already on. And, most meds for Sjogren’s and neuropathy I can’t take as they interact with Tacrolimus. Ultimately, healthy eating and exercise seems for now to be the best course…which I’m religious about now.
I hope your planning a “getting off Tacrolimus party!” Oh, and another fun fact. Tacrolimus is developed from a soil bacteria found in Japan…which is also curious given the origins of this current discussion.