Hey! So I got some good news and some bad news. First the bad news, I need a living kidney donor. Basically I was dealt a genetics problem, specifically ADPKD or autosomal dominant polycystic kidney disease. This causes my kidneys to have cysts grow all over them and make the them massive in size. As they do so, the kidneys grow less and less in function. Think like the chest buster in Alien, except it’s not an alien baby and we don’t anticipate it coming to theatres this fall.
You can learn more about polycystic kidney disease (PKD) here: https://pkdcure.org/
The other problem is there’s serious risks associated with a deceased donor’s kidney in my case, they don’t last nearly as long as a living donor, and there’s a 7 year wait list to get one. My doctors and the transplant doctors strongly recommend a living donor for the best outcome.
OK that’s all terrible, depressing and awful! But there’s some good news in all this!
THE GOOD NEWS! If I can find a living donor willing to be so gracious as to donate a kidney, the outcomes are expected to be quite good in my case. The organ may last 20-30 years, should we get that far–apparently you can just hotswap these in and out. Considering my biological age and health they’ve reviewed, they mostly expect the surgery itself to be the most risky part, as any major surgery can be.
The surgery itself might be in months, or a few years. Naturally we want to hold off as long as possible from doing this, to use up what I currently have if you will. But it’s vital to get the word out now so we can make the plans for when the time comes, we’re ready to do it.
There is a lot of information available on the University of Michigan Hospital websites for this stuff and they will absolutely talk with you and answer each and every question they have but here’s the first few I think are the most useful for someone who’s literally never heard of this before and quell some myths.
- MAJOR MYTH NUMERO UNO–You do NOT need to be a perfect match to me! They can coordinate with many other donors to find the ‘best-fit’ (and thusly best outcome). E.g. Most basic case: if someone is 4 feet tall trying to give for a 6 feet tall person and they have the opposite pairing, they swap them so the recipient in this case gets a kidney that is sized appropriately for their body size and will function better.
- IMPORTANTI STEP NUMERO DOS! The transplant group will NOT let you donate if it’s unsafe for you to do so. They will do a bunch of basic tests, starting with a blood test coordinated near you. The general information site below goes through all the steps to prepare for this.
- As far as I am aware, the actual procedure is completely free to you. The transplant center and your local physicians should work together to help make sure any testing and stuff is likewise covered by insurance/minimal to zero cost to you.
- If you’re a US Citizen, lost wages and travel expenses are covered. (The center can help you with these resources. A lot of it is government + non-profit support.)
- International donors may still have reimbursement for non-procedure related costs but it might go through different systems.
- There’s additional benefits you get post-donor as well.
- By and large this whole situation is completely different than my experiences with the rest of the US healthcare system. I did mention the entire procedure is covered right? RIGHT? There’s actually support available for donors both before and after…like what how? Yup. Please inquire with them about exactly what you get, because it can vary which entity may help you or reimburse you.
- Until we get closer to actually doing the transplant, you won’t need to fly / drive out. The procedure would be expected to happen in Ann Arbor, Michigan.
- They’ve been incredibly patient with me, and I expect nothing more than them willing to answer each and every question that you have. They flat out encourage it. This is an important decision and it is treated as such.
So alright, you’d like to explore if you can donate and how to do so! The donor center must hear from you directly that you’re interested before they can work with you. You can do this in one of two ways: There’s a form and a phone number you can call. They told me up and down the form is easier, but if you had some immediate questions too, maybe the phone number is more for you. You will need to know my legal name for this, Matthew Kowalski, in order for them to make sure your application is paired with mine.
Donor Applicant Form: https://umichumhs.qualtrics.com/jfe/form/SV_4YiUs39kUHCjYbk?Q_CHL=qr
Donor Hotline: +18003339013 or (800-333-9013)
UM’s Donation General Information site (what to expect/how paired donation works/support): https://www.uofmhealth.org/conditions-treatments/transplant/living-and-paired-kidney-donation
This site is really good and contains in-depth videos on how the whole thing works, including the financial support. It also tells you all the steps in the whole process too!
OK. Let’s say you can’t donate or you were like the first 3 people I asked that were born with 1 kidney. YOU STILL CAN HELP! Help spread the word! For one, share this page around if you would be so kind! I am doing my best to reach everyone but as you might imagine that’s hard to do. I created a chat in telegram to help coordinate and chat: https://t.me/+OtwV_ID_NdAxZmY5 . I do have discord and stuff but I think most people, furs especially, would be on telegram. If you have any questions or want to get in touch with me, the easiest way would probably be the telegram chat, a direct message on there is fine.
I cannot thank any of you enough for everything. The furry fandom in particular is one of the most welcoming and warm places ever. My other close friends and family mean a lot to me to as well and I consider them in the same company.
It’d mean the absolute world to me to find a living donor. It means more shows, more time together, more laughter and good times…and just ya know…living. I hear that’s pretty good.