As many of you know, my mom (Jamie Ellman), has been going through the tremendous journey of recovering from a liver transplant in July 2023. The transplant was due to a debilitating genetic disease called Polycystic Liver Disease. The journey began in July of 2022 with her first liver surgery to try and relieve the pain and discomfort of a 24 lb. liver (Eight times the size of a normal liver!) Another surgery in December to address a complication from the July surgery led to being admitted for two weeks in January of 2023. The work really began from there as it was very clear she would need a life-saving liver transplant. Doctors visits, weekly paracentesis, lab draws, and a multitude of tests were needed to prepare for her liver transplant. Through that arduous process, the doctors found a small brain aneurysm, a pre-cancerous breast tumor that required surgery and radiation, and another emergency room visit due to a complication from the weekly paracentesis. All these things occurred on top of her going through liver failure. We found out in June of 2023 that I was a match to be my mom’s liver donor and surgery was scheduled. Here’s the link to my story if you want more details on that journey! - https://tinyurl.com/camsoped
After a few complications in the hospital, my mom was able to go home in August 2023. Her recovery has been going well in some respects… and not so well in others. The good part is that her liver has been doing well and her body is receiving it as best as possible. Polycystic Kidney Disease has been a part of my mom’s life her whole life. We’ve always known she would need a kidney transplant so the not-so-good part is that kidneys do not react well with the exorbitant amount of meds required after a liver transplant (anti-rejection medications, beta-blockers, iron, antacids, etc.) So basically to keep her body from rejecting her liver… her kidneys have really been going through it.
Unfortunately, much sooner than we anticipated, my mom just hit the 90-day mark of her kidney function numbers being below a 20 eGFR (normal for her age is 93). Once she gets labs this week, will be reactivated Status Level 1 on the kidney transplant list. She could have gotten a double transplant back in July but since I was here and ready to go and her kidneys seemed somewhat stable, she and her transplant team decided to wait on the kidney. From what I understand and have been told, this gives her priority points now that she needs one so soon after the liver transplant.
We currently have people going through the beginning steps of the evaluation to be a kidney donor, but they are still taking applications. If you are interested, go here to fill out the health questionnaire - https://utclivingdonor.com/) Once on the transplant list, you have no idea how quickly you can get an offer. It could also take years and honestly, a live donor is a much better option as the donor has gone through the evaluation process and the kidney team knows they are a good, healthy match. This is most definitely what we are hoping for.
It has been a very long year and a half for my mom, and she continues to blow me away with her optimism and perseverance. She has good days and bad days, but she continues to find the light and go to all her appointments, check-ups, and procedures with a smile on her face. This is really the last step to her journey where we truly believe that she can start to fully recover and return to a “normal” life. Apparently, this kidney transplant is a “walk in the park” compared to the liver transplant. We are really hoping that’s true! In my story linked above you can read about how you can return to a normal life after being a living donor. Yes, I donated to my mom, but aside from her being my family it has truly been the most rewarding thing to help someone out to get a better quality of life and I hope you consider filling out the questionnaire to see if you could be a donor as well!
Now that it’s January 2024, as you all know, insurance deductibles start all over with additional co-pays for ER visits, travel expenses, and all that goes along with this whole second transplant journey. I know that we already did a GoFundMe when the liver transplant was going on, but we have one more big procedure to get through! Truly anything helps and is greatly appreciated. We cannot thank you enough for all the donations, love, thoughts & prayers. Knowing the village we had behind us is what got us through the last one and know you are all still there cheering us on. If you have read this far, thank you so much. We hope everyone has an amazing 2024!!!
With love,
Cam
