Why should you consider donating a kidney?
Life on dialysis is shorter, quality of life is diminished, and living donors offer the best transplant longevity, reducing the need for multiple organs over the rest of the recipient's lifetime. Read on for how I got to today and how you might help!
Start here to donate an organ -
Recipient: Charmarie Wilson
Link to make a monetary donation to medical costs -
Link to raise money for t-shirts and a sticker for my car window:
PLEASE SHARE EVERYWHERE!
Hi there, my name is Char. I'm a 40 year old gal living with end stage renal disease. This is my story.
I have always been overweight, for as long as I can remember. Pictures of me at a very young age show me next to other little kids who are normal and I'm a bit more solid. As I aged, that difference stood out more and more.
Because of this, I developed diabetes at around the age of 23, but I didn't have great medical coverage through out my adult life so it wasn't treated with medication very well, if at all. And along with my young and dumb attitude, I ignored a lot of the things that could have helped me without meds, like diet and exercise. So my diabetes went largely unchecked.
I finally got insurance several years later and was sent by my PCP to an endocrinologist and nephrologist to take care of my health. My labs showed that my diabetes had gotten so bad that my kidneys had started deteriorating in response. At this point, I had aged enough to realize how serious my situation was and I started making some changes.
I took my meds. I changed my eating habits. I started moving more. I went from my highest known weight of 440 lbs, down to 315. Things were improving, but not as well as I needed them to. I had to make an even more drastic change. So losing weight became my focus, and in the last 3 years I have made it down to 175 lbs. That may sound like it's still high, but I have an estimated 15-20 lbs of loose skin as well. So taking that into account, I really only have another 15-20 lbs to lose before I'm at goal. I'm working on it! The weight loss also has had the benefit of reversing my diabetes. I haven't needed to take a medication for high blood glucose levels in 3 years and my a1c regularly checks in at 4.3 - 5.2 (normal is below 6.0, and diabetics are encouraged to get it below 7.0). My endocrinologist dismissed me from her care a while back and I'm monitored by my PCP now from time to time, just to make sure I'm still doing well.
But before I had made it down to where I am now, I struggled with just over a year of regain and horrible swelling that started in my ankles and slowly made its way up my body. The swelling made me think of my kidneys, as it's a common issue with kidney disease since your body starts having issues with urine output decreasing, but my new doctor said my labs showed my kidneys were fine and just told me to wear compression socks. While my kidney function was at a 62 GFR, and anything above 60 is considered normal - if he had looked at my labs from 4 months prior done by my previous doctor, he would have seen they had dropped from 87 GFR. That fast of a drop over that period should have set off warning bells. Unfortunately, it wasn't caught and I spent the next year gaining more weight and feeling horrible just trying to move.
By November of 2019, I was struggling to walk the 50 feet from my bed to my bathroom and taking a shower would wear me out so badly I'd have to lay in bed for a half an hour just to get enough energy back to get dried and dressed. It was a terrifying feeling!
My legs had swollen up so bad that they were like a sausage in a casing - it felt like if I bent them the skin would snap open! I could barely handle them being touched, it was so painful.
November 2nd I was proctoring a test for a professional group I'm a chapter officer for, and I tripped while trying to leave the room to answer an important phone call I had been waiting for from my newest doctor's office (I knew something was still not right and had finally swapped doctors once my work insurance finally kicked in). With my legs so swollen, I literally could not bend them far enough under me to get myself up off the floor. After trying for 2 hours to do so, I finally called my best friend to come help me and between her, her two teenage kids, and another gal, we managed to get me back on my feet. I had my car keys taken away and was promptly made to go across the street to the hospital to be assessed.
I was diagnosed with CHF (blood pressure was hitting 180/120 on the worst reading), along with a few other things. And my labs showed my GFR at 38. Things were bad. I was put on a diuretic and heart meds and stayed in the hospital for 10 days. After release, the same meds continued. By November 20th, with the help of the diuretic, I had dropped 96 lbs. All excess fluid due to my kidneys. Then I got new labs. Because of all the edema on my body, the labs in the hospital were skewed and numbers elevated. My new and actually accurate GFR was now 16.
You can think of the GFR in terms of percentages. So, I went from 62% to 16% in just shy of 10 months. My kidneys were now barely functioning and struggling to keep up with doing the things they needed to be doing to keep the toxins and fluid from remaining in my body.
Fast forward to late April 2020. The world has gone to hell and the surgery I was supposed to have in late March to make an access site in my arm for dialysis (a fistula) was canceled because it was considered elective. I had discussed doing peritoneal dialysis with my team because I wanted something I could do at night while I slept so it wouldn't interrupt my life as much. My nephrologist called in a favor with another surgeon to have my PD catheter placed, which took about 2 weeks to heal and become useable (fistulas take 5-12 weeks depending on your body and are for hemodialysis). Things started to seem good.
I finally started training for how to do PD on May 18th, which was the beginning of my dialysis treatment. They took labs that day as well. I go in the following day for more training and while there my lab results come back and they are so abysmal that they didn't know how I was even awake and alert, as my anemia was tanked. I was sent directly to the ER.
They did an additional 8 hours of constant dialysis that night, and then 20 straight hours the following day. And my labs continued to go down further despite that, so it was determined that I had to have hemodialysis immediately, as it's more aggressive dealing directly with the blood. But because my fistula never got placed, I was now forced to have a chest catheter inserted directly into my vena cava. It was not a fun time! Spent 3 days getting HD through it before being released. Since then, I've lost another 80 lbs of fluid to get me to where I am now.
I go to HD 3 days a week, and with my hook up and disconnect times and 4 hours of treatment tethered to a chair by the tubes transporting my blood through the machine to scrub it clean and remove fluid, it's a good chunk of my life taken from me. I'm grateful for what it does, but this is not the life I envisioned for myself.
So, now that you know my story, this leads me to where I am now and why I'm asking for an angel. I need a kidney transplant. This is not technically considered a life or death need as you can survive on dialysis for 5-10 years on average. Some have gone longer, but that's not the normal. I'm on the list for a cadaver kidney, but the list here is 3-5 years long.
Cadaver kidneys can work well for many years, but they are not the best option. A living donor with healthy kidneys gives me the best long term option. Some have lasted over 40 years, putting me into my 80s! I will be grateful for either option, but the living donor has better chances and I could shave off years of dialysis waiting for a cadaver match on the list.
There are several things that have to match in order for a kidney to be usable to me. Blood type is one. I'm AB+, meaning I can receive all blood types, so that's a bonus to me. However, because of all of the blood transfusions I've had due to my anemia (a condition made chronically worse by my kidney disease), my body will have developed antibodies to the blood I've received which means people that share similar blood will probably have a higher rejection percentage of that organ in my body. Boo! Due to this factor, I need a lot of people to volunteer in hopes the right combination can be found with the highest chance of success.
But even if you aren't a match for me, there's still the possibility you can help me in a round about way through the paired donor program. This allows you to give your kidney to another person needing one that is a match, in exchange for me getting a kidney from their loved one that matches me. Sometimes this matching occurs over several different people (I've heard of 9 pairs mixing!), like a crazy map with pinned strings criss-crossing each other!
If you're reading this (and I know it's been a long read, I apologize!), I'm asking you to consider being a donor. I'm asking you to please answer the health questionnaire in the link at the top page to see if you qualify and then to follow up with further testing if you do. All costs associated with the testing and surgery itself are fully covered by my insurance. None of that will come out of your pocket. I'm asking you to make a sacrifice to improve my quality of life and extend it more than what dialysis can. It's a selfish ask, I know this. But I am asking it anyway, because there's also my 14 year old child that still needs a healthy mom now, not several years from now.
You may have also noticed that there's a fund I've set up for donations. Organ transplant requires life long medications of various types, including anti-rejection ones. I'm currently covered by Medicare due to my disabled status. Medicare covers me while on dialysis and for 3 years after my transplant. At that point, I'm considered a successful transplant and no longer disabled and Medicare stops. Hopefully, I will have another insurance that can take over for these costs then. But I could be in a position where I have no insurance at all, or an insurance that doesn't cover the meds I need, etc, meaning I have to pay out of pocket for the cost. I CANNOT live without these medications. As soon as anti-rejection meds are stopped, my body starts attacking the donor kidney. It's a foreign object and our immune systems are designed to kill what it considers invaders inside us. So I'm trying to prepare for that possibility now.
The program I'm using to manage my monetary donations is meant specifically for medical purposes recommended by my transplant team. I'm using them because they're a charity organization where the money goes to an account for me instead of directly to me, so I don't get taxed on it or lose Medicare coverage because it's considered income. They also charge a lower fee than other companies like gofundme do, so more of your donation actually goes into the account for my needs and not into the companies pocket. And they dole out the funds directly to the medical entity on my behalf, so you can ensure that I'm not asking for money for one thing and then spending it elsewhere without accountability. It goes from you, to this company, to the pharmacy or hospital, etc.
If you can't donate your kidney to me for medical reasons or simply don't want to for whatever personal reasons you may have, this is a way you can still help. I would be just as grateful to you for that as I would be for the organ. My transplant team says they suggest a $15k buffer to cover one year of meds without insurance. That's a lot, I know. But as you can see from the attached picture, the monthly cost for my meds will total $4262.62 for the first 6 months, then $2217.45 after. Unless I get an infection of some sort, then it goes right back up to that full amount again. $15k is just a drop in the bucket compared to the cost of what the remainder of my life time will incur!
So, that's my story and how I've gotten to where I'm at now. Thank you for reading it all and an even bigger thank you for either type of donation you can make to me. If you are unable to donate in either of these ways, then my final ask is to please share my story across your social media pages so as many eyes can see it as possible! The more that see it, the better the chance I have of finding a donor.