A Kidney For Dana
Hi! Thanks for stopping by to read about my kidney issue.
If this is your first visit here and you’d like to support me and spread the word about my kidney quest, I’ve started a Facebook group you can join here. In many cases of folks finding a kidney, it was a posting in a community or church newsletter or a friend of a friend who heard about someone that needs a kidney that got the ball rolling. Through the magic of paired kidney exchange, if one person steps forward as a donor, they could save as many as 12 lives (or more). See the link to the Dr. Oz show as the end of the post to find our more about just such a person.
I’ve only told a few people about my health problem, but now is the time to get the word out, as I find myself of being in the awkward situation of asking my friends and family to consider donating a kidney to me. I’ve tried to put it all into words here. I’m hoping to use the powers of the Internets, Social Media, SEO, and my knowledge of marketing to find a new kidney.
Here’s the problem, I have a very rare genetic disease called Bardet-Biedl Syndrome and I was born with eleven fingers, a classic marker of the disease. Sadly, I did not get keep my cool eleventh finger, as I’m sure that would have made me a better sword fighter (think Princess Bride). This is a pretty crazy disorder that also can cause severe kidney problems, as I now know. After reading about my fellow kidney patients, I appear to be in better health than many. So, while my kidney situation is overall fairly bleak, I feel pretty lucky to be as healthy as I am.
All of my kidney craziness kind of came out of nowhere. I had been treated for high blood pressure since the late 90’s. My primary care physician retired and I needed to get my blood pressure medicine refilled. I had to find a new doctor to get a new prescription filled. When she ran some basic blood tests she noticed that my creatine level was elevated. More tests were done, and after a bunch of trips to a number of different doctors, it was concluded that I had Stage Four Kidney Disease. The hope is to get a new kidney in me before I need to go on dialysis. My current creatine level is 3.3 and my potassium has also been elevated. My doctors estimate that I might have a little less than 18% of normal kidney function left.
I’m also on a potassium restricted diet, which has been especially hard since I’m also a vegan. Why is that hard you ask? Well, pretty much all of the foods in a vegan diet are high in potassium. So no bananas or orange juice, ok I can cope, but no beans, spinach, tomatoes, nuts, or chocolate, that’s tough. I eat alot of plain bagels these days. It appears that my vegan and previously vegetarian lifestyle (for 20 years) might have unknowing helped preserve some of my kidney function, as a diet high in animal proteins is really tough on the old kidneys.
If you’ve read this far, you might be interested in who I am and what I do. I’m 42 years old and a lifelong resident of the Greater Annapolis area as I grew up in Pines-On-The-Severn in Arnold, MD. I graduated from Broadneck High School in Annapolis in 1985. Now I live in Severna Park, MD with my wife, Christa and two kids, Weber and Olivia. I own MacMedics a Macintosh computer service and consulting firm that I started 20 years ago. I have two Quarter Horses and a black cat. I’m active in the Linthicum 4-H Hi-Riders club with my family.
Christa, Dana, Olivia, and Weber (My Father In-Law, Mark Weber is also in the raft behind me)
My kidney transplant is being handled by Johns Hopkins Hospital in Baltimore, MD which is as far as I’m concerned is the center of the kidney universe. They have been great to me, and helped me come to grips with all of this kidney stuff. If you’ve thought about donating, the testing is super easy and free and Johns Hopkins takes case of everything!
For me and my kidney situation, I’m very, very lucky as I’m a universal recipient. Because of my rare blood type, I can receive a donated kidney form ANY other blood type. I’m told this is very rare.
Type A can donate to types A and AB.
Type B can donate to types B and AB.
Type AB can donate to type AB.
Type O can donate to types A, B, AB, and O
Blood type it the first hurdle for kidney donors, and since I’m AB, that is not a concern for my kidney donor.
The second hurdle is Tissue Type. A second test of compatibility looks at the match of human leukocyte antigens (HLA). There are three categories assessed for kidney donation, designated HLA-A, HLA-B, and HLA-DR. You inherit one set of these three antigens from each parent giving you a total of six HLAs. The closer the match the better because the recipient is less likely to reject the donated kidney. A perfect match is six of six, in my case if my donor matches three of the six, then that is fine.
If you are interested in donating a kidney to me or to anyone else, Thank You. Just contact Johns Hopkins (see the bottom of the page). They have a short questionnaire for you to fill out and fax back. If you live in the Baltimore area, they will send you to one of their local testing centers to have some blood drawn. There’s the main hospital and 3 or 4 other sites around the Metro area. If you are out of state, you can still be tested. They will send you a package with blood testing supplies and you simply take that to your doctor, and they will send the samples back to Johns Hopkins. All it take it two tubes of blood for the transplant folks to find out if you are able to be considered as a kidney donor.
I’ve had a few people get tested as donors for me, and so far nothing has worked out. If you are thinking about being a donor for me or someone else. Don’t wait! A common mistake is to have a line of possible donors waiting to get tested. One person will get tested, and another person will wait to see if it works out or not. In order to find the best possible match, as many people as possible should get tested, and the sooner Johns Hopkins can start crunching that data the better. Plus, the more people who are tested for me increases my chances of finding a perfect match. If I can find a perfect match, that kidney could quite possibly last the rest of my life. I’ve been encourage to have as many people as possible tested so that has the greatest chance of happening.
There are of course lots of questions to ask, but one of the questions I get asked the most is how do you pay for donating a kidney. Again, I’m lucky to be fully insured, and as such my health insurance covers the costs for both me and my donor.
Donating a kidney or other organ is truly the gift of life, so for the folks that have even thought about being a donor, and all of the people that have supported me thus far, thank you!
Feel free to get in touch with me via email, or you can contact Johns Hopkins directly and say that you are interested in learning more about being a donor for Dana Stibolt. It’s important that you use my name, and be sure to also put my name on your paperwork that you fax back.
Valerie Bell
Patient Service Coordinator
Comprehensive Transplant Center
Kidney Donor Office
720 Rutland Avenue / Turner 34
Baltimore, MD 21205
(410) 614-9345
(410) 614-6906 (fax)
I recently was a guest on Mario Armstrong’s Digital Cafe segment that airs on WYPR in Baltimore. Mario was nice enough to interview me about my quest for a new kidney and my use of social media to aid in my search. This is a deeply personal topic, and I thank Mario for inviting me on his show to talk about my story. You can visit Mario’s Blog to hear the full show via a MP3 you can download here.
If you visit this link you can watch a clip from The Dr. Oz Show (of Oprah fame). It shows how one person who decided to donate his kidney started the worlds largest kidney swap. Eight people ended up getting a kidney from eight total strangers. Pretty amazing. One of my doctors, Dr. Montgomery, Director, Johns Hopkins Comprehensive Transplant Center also appeared on the show, but the full episode has not hit the Internet yet. I’ll post it here when it does.
