The TL;DR on how you can help (if you scroll down, the full story is below):
In short I have a disease that requires a living kidney donor. There are no other viable options for me. I have about one year before I will need to have this surgery before getting extremely sick. There’s a ton of details below (see ‘the full story’), but here’s what people need to know to get started being a living kidney donor:
Do one of the following:
Fill out the Donor Applicant Form: https://umichumhs.qualtrics.com/jfe/form/SV_4YiUs39kUHCjYbk?Q_CHL=qr
Call the Donor Hotline: +18003339013 or (800-333-9013)
You can put in Matthew Kowalski or Iggy as who the recipient is.
I’m with University of Michigan Ann Arbor. The clinic is awesome and any questions, the hotline is the best way to get answers to all questions. They’re super patient and will answer every question you have and it will be a positive experience: They want to help and understand this is a big decision. I cannot thank anyone enough for trying!
Say you’re interested, but on the fence or unsure about it. All I can say is, please try! The clinic will NOT let someone donate unless it’s safe for them to donate. The bar is high to be a donor, and why I need to ask literally everyone about this!
To start the process is really non-committal! The first steps in donating are filling out a form with typical medical questions you’d be asked similar to going to a new doctor for the first time. After that you’ll have a blood test near where you live. Please talk to the clinic about costs, but everything should cost you $0 and be covered via government, non-profits, and insurances. You can learn more about the whole process here: click here to go to UM kidney donation website.
It’s also unimportant if you’re a direct match to me. (via donor matching, you can save other people’s lives too!) Yes, what you see on the TV and movies about this just isn’t true.
The surgery is of course free, and there’s financial resources available that the clinic will connect you with so it shouldn’t cost you anything financially. Missing wages and travel, etc. should all be covered. Donors are treated completely different than what you likely expect from the US medical system. The surgery date will be scheduled in advance, so a donor will know weeks to months in advance.
The entire process will take months and if selected to go further in the process, you will learn everything about this through meetings, eventually going to the clinic in-person. All I can say is don’t let fears you may have keep you from trying! I cannot stress enough the clinic wants you to be fully informed and assure it’s safe for you to donate. I have a friend who went through who donated for a friend, and offered to be a resource for anyone interested to understand how the entire process works as well. Please get in touch with me and I’ll get you in touch with them.
If you’ve tried to donate and cannot (Thank you for trying!), you can still help spread the word to those who maybe can help!
Anyone can help spread the word! I have some posts you can repost that link back to here:
Many of you have asked if they can share this with their community, church, work, family, etc. Please, go for it! And I cannot thank you all enough for helping share the word! You are welcome to share this page (iggyland.org) and my contact information. Anyone can reach out to me directly about this!
I cannot express in words (but I’ll sure try!) how thankful I am for everyone’s help and support in this! Thank you so much everyone!
Here’s a variety of ways to connect with me and others more closely on this:
I have a telegram chat for this and if you use that platform you may direct message me this way: https://t.me/+OtwV_ID_NdAxZmY5
Here is my personal Discord which also lets you direct message me that way if you would like to: https://discord.gg/bUZg3gbgUs – my discord name is iggydinosaur
If you’d like to send me an email: Email
—
I tried to cram in as much information as possible and ultimately if you’re interested in helping personally, the clinic is the best resource and they will go through every question you have. I cannot stress enough they won’t let you donate unless it’s safe for you, and that’s the most important aspect of this. It’s not important to be a direct match either, due to donor matching. (I’ve been asked that question more times than I can count!)
Again, thank you all so much and I owe everyone I’ve known so much as I need you all at this time.
Cheers!
Here’s the full story:
—
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/
There is no other viable option besides finding a living donor. That’s pretty much it. Without it, I’m probably gone in a few years. That’s why it is incredibly important to ask everyone I know to give a thought on it, and see if they’d be willing to personally help save my life. The bar to donate is really high–the clinic will not let someone donate who it is not safe to do so.
There’s serious risks associated with a deceased donor’s kidney in my case (contracting HIV, hepatitis, etc.). They also don’t last nearly as long as a living donor. I will likely never get one as there’s a 7 year wait list to get one. I will not make it that long. My doctors and the transplant doctors strongly recommend a living donor for the best outcome and it’s the only viable option as the rest drastically reduce life expectancy or I just die.
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 said the only major risk is having major surgery. There is no other viable option for me.
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.
Retweet/help spread the word! Here’s some social media posts to simply retweet/repost:
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.
-Iggy