Waiting to get on the List

[JenN18]

I was originally diagnosed with focal segmental glomerulosclerosis in 2012. In 2013 I finally received the lupus diagnosis. For several years I was on medications my medical team now thinks contributed to my kidney failure. I underwent testing to go on the transplant list, and am waiting for the committee to meet to discuss my case. I'm 40, married with twin boys, and am finally having to go part time at work. Any advice is appreciated!

[Lpgath]

Hi! I was diagnosed at the age of 11 with Membranoproliferative Glomerulonephritis Type 1 (which can sometimes be caused by lupus as well). Mine was caused by a post streptococcal infection. I am now almost 36. I'm married with an 11 yo boy and 9 yo girl. I just got on the UNOS list as of June 6th. I am not on dialysis yet, but GFR is 13. My advice (if you haven't done yet) would be to do everything you can now to find any living donors willing to be tested. My transplant center gave me a link for people to go to that would tell them if they even would be a candidate before I was listed. They were able to start testing as soon as I got listed as all of that was ready to go. We have been given approval to test 5 people at a time, and are waiting on the results of those 5 right now (takes a few weeks at a time) to see if they can move on to the next step or not. I was told sometimes they only test 1 at a time, but my insurance approved the 5, so different in every case. They are trying to keep me off of dialysis. Hopefully things can move along quickly for you! I'm hoping for the same, but all of the waiting for any part of any of this process is the hardest part!

[JenN18 in reply to Lpgath]

Thank you! May you find a donor soon! My last eGFR was 18. It's been dropping steadily.

[Lpgath in reply to JenN18]

Thank you! Hopefully it stays at 18 through the whole process. 🙌🏼 Best wishes to you!

[NeedingAdonor in reply to Lpgath]

Do you mind if I ask what state you live in if you are in the USA? We are in Oregon and I would love to find out how to get a link like that for people to go to that would tell them if they would be a candidate? Is this list of people ones you know? Then you directed them to that link?

[Lpgath in reply to NeedingAdonor]

NeedingAdonor - I live in Austin, TX but the transplant hospital I am going through is University Transplant in San Antonio, TX. The transplant hospital is the one that gave me a website link to direct people to go to, to sign up using my name as the recipient. It is a list of people that I know personally that were willing to sign up for me, so they have a group of people they are testing along the way. I shared my story through some live videos on Facebook and it just was something my friends and family watched and also shared for me. I have had kidney disease for 25 years but some didn't even realize, so it was nice to just open up and share with all of my friends. I didn't ask for them to sign up, just said that if anyone would like to, here is what you should do and explained the process. Even if you don't have a website link, you could do something similar and post the phone number to the person at your transplant facility they would need to contact. YouTube is another avenue you could use. I think many people connect to seeing a person and hearing their story. It may just be that the transplant hospital I am at uses the website link for sign up, but just start by asking yours as well and see if they have anything like that. We were very excited to find out my sister was a perfect match for me, but after going through further testing, they found she has kidney stones and cannot donate, so we continue on with testing others, and they are looking at some for paired donation as well. It is a long process, and just wish we could speed it up for everyone involved. Good luck in your journey!

[JenN18 in reply to Lpgath]

So far I think only one person has been tested for me. My social media campaign has been up and running since April. I'm getting frustrated. The thought of dialysis scares me.

[Lpgath in reply to JenN18]

I agree! I'm right there with you in the dialysis issue and still trying to avoid. GFR is currently still at 13 and haven't had access put in yet. I too, started my journey on social media in April of this year. I definitely feel like I'm wrapping my mind around settling in for the long haul as I'm blood type O+. Definitely sucks to know my sister is my perfect 12/12 match and I can't have that kidney! Hard to help your kids understand too, as I'm sure you're familiar with. I have only made one official post on this board, but if you look at my profile the one post I did has some replies on it. One person replied with their story and website they used to find a donor. It was matchingdonors.com. I haven't looked into that yet, but passing along in case it would benefit either you or NeedingAdonor.

[NeedingAdonor in reply to Lpgath]

I'm praying for you and everyone else for a better life ahead! This is one challenge that I thank god has a support system through the NKF

[Bert64]

Pay close attention to your diet and absolutely no cola colored soda, the phosphoric acid is really bad for the kidney and just be Proactive about your treatment, I'm on my fourth kidney.....good luck.

[kidneystories]

Good luck with your listing. There will be some hoops they ask you to go through, but it's worth it. Be persistent and keep your eye on the prize!

[yahoo999uk in reply to kidneystories]

Hi

Here in the U.K. the average waiting time for a kidney is 2-3 years but I was very lucky that a cadaver matching kidney became available in 4 months. So keep your spirits up, you could find one sooner than you thought.

[WYOAnne NKF Ambassador]

I also was diagnosed with focal segmental glomerulonephritis. Mine was caused by a post strep infection. I received my life changing transplant from a 16 year old that was involved in an auto accident. I had my transplant 17 years ago and I had friends and family members go through the testing to see if a suitable donor. In the meanwhile, I received the call that they had a kidney for me. And what a kidney it was.....matching tissue was a 4 out of 6 match. So, don't fear a cadaver kidney! But, I know the wait on the UNNOS list is longer that it was when I needed my transplant (for me, I waited 15 months). So, I guess my advice to anyone is keep in touch with your transplant center, the National Kidney Foundation in your state and any Donor Network in your area if you are thinking of a living donor. They can help you find a living donor. Best of luck to you.

[mtwskk]

Do exactly what they tell you and be a pest.