General
What was your original diagnosis that led to your transplant?
July 29, 2023
in General
I was diagnosed with Lupus Nephritis at 16. Systemic Lupus doesn't only affect the kidneys. It can affect any organ in the body. There are 4 different types of Lupus. The 2 most common are Discoid Lupus which effects the skin. And Systemic Lupus which attacks tissue and organs.
I was listed on the wait list when I was about 22. I was 24 when my father, a living donor was approved and we were able to go through the surgery. 6 years after the initial diagnosis I was transplanted with my father's kidney.
Share your diagnosis below. Any organ.
1 - 25 of 25 Other Answers
My twin and I were diagnosed with glomerulonephritis; damage to the kidney filters at 19 years young; the summer after graduating from high school Mother’s Day 2011. Our mom had a kidney transplant on Friday, July 10th, 1987 at Research Medical Center and Dr. Nelson was her surgeon and she had my brother and I on Monday, March 23rd, 1992 and I was born at 10:21 AM and my twin brother was born a minute later at 10:22 AM! My brother had his kidney transplant on Wednesday, 1/11/17 at Research Medical Center in Kansas City, MO and I had to travel with my parents and my donor and her family to the Methodist Speciality and Transplant Hospital in San Antonio, TX summer of 2019 because the same surgeon my brother had for his part of the transplant was fired for sexual harassment; who was also supposed to do my part of the transplant. I was in San Antonio summer of 2019 from Friday, July 27th to Wednesday, August 21, 2019! It has a long and tiring and brutal journey! Love this community and the people I have met!
Correction; I was in San Antonio, TX from Saturday, July 27th to Wednesday, August 21st, 2019
Transplant Patient
I was diagnosed with Glycogen Storage Disease at 4 months old. Listed at 21, transplanted at 23, after an unexpected pregnancy and loss caused my body to stop responding to any and all treatment efforts.
My daughter's lungs were destroyed by bactrim. (Dr Jenna Miller's research describes the details of what actually happens.) The damage happened very quickly, within days. She received a double lung transplant at the age of 26, after 79 days on ECMO and a bit longer than that in an ICU. Last week was 2 years ago that she first went into the ER with breathing issues, so we've been talking a lot about what we can remember. We still feel kinda like "what the h@#$ just happened?"
Transplant Patient
I can definitely relate to that feeling! I also had a very chaotic and wild transplant experience. I'm at 3 years now and I still have a lot of moments of what happened. I'll still talk about things and bring them up because I'm trying to make sense of it all.
I'm so glad your daughter has you, and that you both have this community to learn from and be supported by
Type-1 diabetes. Gets to most things in the body eventually, and kidneys were the most severe the quickest.
I have X-Linked Alport Syndrome! Diagnosed at 18 months old.
Transplant Patient
T1D….
T1D... had some kidney damage since the time of my diagnosis, just progressively got worse.
Two of my three children were diagnosed with Primary hyperoxaluria Type 1 which is an ultra rare genetic condition in the liver, but causes kidney stones which, in turn, damage and destroy the kidneys.
NASH/Cirrhosis with portal hypertension. Never been sick what a roller coaster. I have had ckd since LTP.
I also had NASH/Cirrhosis. Had no idea I was sick but found out during a routine lab test by my dermatologist. Later I found out that I also had cancer on my liver as well. Roller coaster ride but happy to say I’m 3+ years post transplant.
Yay Deb, I myself never sick I had sinus surgery and Dr said you need to get some blood test, bleed a lot during the surgery it was suppose to be a simple surgery but turned out to be a mess to get over. I am almost 3+ years myself.💚💚
Melsamm seems like we have a lot in common. I was shocked when I saw my gastroenterologist, which took me 6 months to see, to find out I had esophageal varices that required surgery. I had some banded 5 different times and had one to burst. Did you have these as well?
I was able to get to a hematologist within 5 months Yes but I had some very small ones and had no problems. I was put on the TP list quickly bc my liver was failing fast. I have been so blessed for sure
A medication damaged my kidneys. I found out in 2007 at age 37 that something was off when i got regular bloodwork. It is a bit of a longer story and not sure if anyone would want to hear more of the back story.
Hi Jay please share that is what we r here for.😀
The medication that was prescribed years before I was diagnosed with kidney disease or kidney damage… Was a mental health medication. I was aware that this medication was metabolized in the kidneys. I did monitoring periodically to check the blood levels for this medication. I was scared to go off this medication because I was unsure what the impact would be on my life. I had gone to college and graduate school on that medication. I had a first career and then started a business on that medication. I was married and had a child on that medication. I was worried I would lose it all.
Jay please know that none of us are here to judge. We are here for you and anyone else in the transplant community. I’m glad you shared, you never know you may not be the only one to have the same situation. Stay strong.
Jay, Thanks for sharing I am so sorry that a medication that was suppose to help you w/your health caused u to have to have a TP. We r here for u
❤️🙏🏼❤️
I was diagnosed with Cirroisis exactly one year ago today. I had seven liters of fluids removed and I started the process getting me in a good place. I went to Mayo in Jax. Fl. and had a week of extensive testing done.
My wife and I decided to try and get Vanderbilt involved, so that we didn't have to stay in Florida for a year or so. I went through 8 months for getting all of my stuff together and making the "list." Then 4 hours afrwe getting on the list I was headed to the hospital to receive my "gift of life."
One year ago I never dreamed that I would be where I am today. I have a new liver and I seem to be doing well with it. My labs have been very good and I am slowly gaining some strength. It has been 365 since my last drink and I have never missed or really wanted it. I have a wonderful wife and family that has supported me throughout. God has truly blessed me!! The only thing that I want is to know who gave their all for me. Not that it is all that important. It is just a part of me that would ne more at peace.
Hi ole_ball_coach. I am a few days behind to tell you congratulations on your 1year LTP. I hope that u will get in touch w/your person that gave u your gift of life I have been in touch w/my hero Andy’s family who gave me my gift of life Andy was only 25 he suffered from mental health. I hope one day u will get in touch with them. I am so glad you r doing so well I like u am living my best life💚😊we r so blessed.
Melsamm, I was told that I had cirrosis one year ago. I only got my new liver four 1/2 months ago. Yes, we are blessed!!!
Everyday I guess is our anniversary when u are given a new liver and second chance at life😊💚 I am so glad u r doing so well..