Hey, I'm Jason. I'm a chronically-ill-super-freedom-loving-medical-self-journalist.
Wait. Before I begin, it is unfortunate that I have to say so, but … I do not want to purchase one of your kidneys. I can’t afford it. I’m not even sure I think that organ sales is cool. Or ethical. In any event, don’t ask me.
Just before April, in 1987, in the middle of my high school’s big Battle of the Classes, my girlfriend Erin broke up with me. I got really, really sick. My mother thought maybe my heart had broken. She was close.
Some 500 tests later (including being measured for an allergy to fava beans), I was still sick. I had experienced damaging, but acute, post streptococcal glomerulonephritis. Basically, I got strep throat, er, strep kidney. That was my junior year. In April of my Senior year, it happened again.
The diagnosis eventually became clear: my kidneys had been in a street fight with some punks, and lost. I was lucky enough to make it through five and a half years of college, and to be attending a school where a world-famous nephrologist (kidney doctor) worked. In a very Arlo Guthrie-esque way, the Doc told me, “Kid. You’re gonna need dialysis.”
And so in January of 1993 my medical team in Kansas City called me to the lobby of the University of Kansas Medical Center. “Kid,” they said, “you need to start dialysis.” And life as I knew it ended abruptly. There’s no mercy when body parts are dying.
Since 1993, I’ve spent two decades of my life running back and forth to thrice-weekly dialysis treatments, had two kidney transplants, two complete kidney transplant rejections and am currently on Peritoneal Dialysis. (I also did some other cool stuff like have part of my parathyroid cut out – stuff like that).
I wanted to write this blog to inform you about the daily perils of living without kidneys. I hope to inform you about the thousands of people who wait, and die waiting, for a kidney transplant. I also plan to explain, in some gory detail, what a horrible thing it is to go to dialysis.
I had lived in secrecy and fear most of my life because of my disease. I never wanted anybody to think less of me. But, at this point, I have four kidneys, so you can only think more of me. The average wait time on a transplant list in California is within the 10-year range (especially for us O blood types). I have a family: wife Rebecca, step-daughter Wallace, daughter Violet and two cats. I am disabled and work at home – taking care of myself. I have almost everything any guy could ask for.
I need a kidney.
I came across you blog recently while doing a search on PD blogs. I, too, am a PD patient. When I got so sick from uremia and finally surrendered to my kidney disease by showing up at the emergency room on April 1, 2013, nobody said “APRIL FOOLS!” I was devastated. I knew little about PD and it was not easy to find insight from someone who was experiencing it. I had come across some forums where people were complaining mercilessly about their situations and complications, but I hoped there was more to PD than that. I wish I had come across your blog back then. My neph, had assured me everything was going to be ok and that by choosing CCPD, my life would be relatively normal. I didn’t believe him at the time, but I now know that I can live an almost normal life and PD won’t stop me from doing anything that I want to do.
Most people have no idea what PD is or that it’s even an option. If they do, there seem to be many misconceptions about it. I have found myself becoming a huge advocate and talking about it to anyone who will listen (people probably want to run when they see me coming!) and I recently started my own blog. I believe that if you can help even one person understand that they shouldn’t be afraid and that this can be a good thing (as good a thing as dialysis can be), you’ve done something meaningful.
I love reading your blog. You tell it like it is, with a sense of humor, and I truly appreciate it. I don’t feel so alone in all of this. Thank you so much.
Hello, just wanted to mention, I loved this article. It was
practical. Keep on posting!
My friend Howard Seth Cohen told me about you. I’ve since shared it on my Facebook.
It’s very important you share your story –thousands are out there just like you. Don’t be afraid to shoot some videos on days when you don’t feel like writing. Your daughter is beautiful –wow, what a gift from God.
I found your blog while searching for a photo of what my boyfriend’s dialysis port looks like. A week ago today, he was given the most wonderful gift of life (a beautiful healthy kidney) by a very dear friend of ours. His creatinine is the lowest it’s been in the last two years, and despite having just had surgery, he says he feels GOOD.
I understand your ordeal is many years in the making, and though my boyfriend’s only began two years ago, I understand the ups and downs (many more downs than ups, sadly) of life with somebody on dialysis.
About 2 weeks after his 21st birthday, he was diagnosed with aplastic anemia (This is believed to have been caused by exposure to benzene in diesel fuel..he worked at a gas station), and underwent a bone marrow transplant via umbilical cord stem cells. A well known complication of almost all transplants is the dreaded EBV/CMV ..which he developed along with non-Hodgkin’s lymphoma in his lungs, spleen and intestines. Along with that, his platelets and blood cells, though being made by his new bone marrow, were quickly dying and doctors had no idea why. Plasmapheresis treatments ensued until a doctor finally told us to just take him home to die, because he was using up the plasma supply at the hospital. (No hoke.)Miraculously, his platelets and blood cells began to sustain themselves, and his blood levels have been great for the last 2 years or so.
Later, an experimental tri-viral injection was flown to Boston, where we live, to try and kill the tumors. It worked! He’s been tumor-free since January of 2009.
That wasn’t the end of it, though … he soon developed Secondary TTP, which doctors chalked up to his weakened immune system. The TTP caused his blood pressure to be so extreme that the blood vessels in his eyes basically exploded, leaving him blind for 6 months, because his retinas detached. They treated this with steroid injections administered into his eyeballs. I can’t even imagine. Thankfully, that worked, too … Anyway, the blood pressure also killed the tiny vessels in his kidneys, and that began his journey into the world of dialysis. Blood pressure also caused a seizure in the spring of 2009, and doctors told us there was no hope of his kidneys ever working.
As you previously stated, kidney failure is a lazy disease. He said on numerous occasions that he feels he’s a slave to a chair 3 days a week, 4 hours each day. We did the math, too.. that’s 25 ENTIRE days spent in a dialysis chair each year. Disgusting.
Thank you for allowing me to post this mini-novel, and I’m sorry for the length… you just inspired me to tell his story. I have nothing but the best of hopes for you and your family. I’m sure you know it already, but you’ve got tons of support in your battle. Keep fighting.
First and foremost, I hope and pray you are able to have another kidney transplant – the best possible treatment for end stage renal failure. I wish I could personally donate a kidney to you, but I am rejected, as I have RA and couldn’t even donate to my 11 year old daughter. My husband, was approved after all the tests, but suffered a ruptured brain aneursym. Amazingly, he is ok, but was no longer a candidate as well. My husbands, first cousin, stepped up and donated her kidney to my daughter. We were so lucky to have her unselfishly donate! She is doing great and feels exactly as she did before donating her kidney. I do my best to spread the word of organ donation and its importance. I have a Donate Life magnet on my car to spread the word as I travel and most importantly, I have indicated I am an organ donor on my license.
I don’t know if you read the article in a recent People’s magazine regarding a kidney exchange and how many transplants were performed using this exchange. It was an amazing article and I believe it was in the November or December 2009 issue.
I wish you the best and I really hope you find a kidney soon. I have enjoyed reading this blog and will continue to follow it.
I want to chime in here on the kidney exchange program. I am a friend of Jason Tully’s (comments above) and am currently entered into the Paired Donor Exchange program with him in San Antonio (where he lives, I live in VA). I tried to donate directly to him but we didn’t match. I was horribly disappointed about that until they told me about the exchange program, which I find incredibly exciting because so many more people can benefit as a result. We are currently waiting for the right pair or pairs to pop up but like you, Jason has had a previous transplant and that makes finding a match more difficult. I just want to encourage anyone out there who would consider being a donor to look into this program, whether you match your loved one or not. Kidneys from live donors have a much better chance of successful transplantation. And being part of this program can mean saving not just one life, but two, or three, or more… and you never know how the lives you touch may touch others.
BTW I really enjoyed reading your blog… loved the Arlo Guthrie reference. Thanksgiving is just around the corner…
As a fellow dialysis patient I think it’s great what you are doing. I recently started my own blog for many of the same reasons. I admire your courage and strength and think you are a very good writer and really funny. I will be reading your blog regularly from now on and will try not to steal too many ideas from you for my blog. (Ha-Ha?) Anyway, good luck with your treatments and I sincerely hope you get a kidney soon. Keep up the great work.
What do you mean by an O kidney?
When I say “O Kidney” I mean a kidney from a donor with the blood type of “O.” That said, I’m glad you pointed this out. I don’t need a donor from someone with type O, I only need a donor. Of any blood type, creed, etc.
With the exchange system that many hospitals are now using, it’s possible for me to offer up a donor who does not match my blood type. This person, who could never directly give a kidney to me, would give his/her kidney to someone else who could use it. Then that someone would offer his/her donor to donate to me in exchange. It’s basically: if each of two people have what the other person wants, why not trade?
We were talking about how simple this system is, and how effective, in my dialysis center the other night. We wondered what could have possibly taken so long for a system like this to get working. I guess sometimes the simplest ideas just sit right in front of us.
As a person who also lives with a chronic disability who endeavors to have a life of relative normalcy and endures daily health maintenance to do so, I respect not only your request but also your method of making it. I agree that the more awareness there is, the higher probability there is for you to achieve results. I wonder if you might feel comfortable being fairly specific about what the process is for the different phases of donation in the “Think You Want To Donate?” section. More information may lead some folks not just to the trough, but to actually drink. Perhaps an FAQ on what the life of a donor is like post-donation, as well. Also would recommend extending all available social networking resources to drive traffic to this site. I actually know someone who successfully found a donor this way recently, just from friends of friends of friends all posting the URL to his site in their Facebook and Twitter status updates, as I will do now.
Summer, your note was spectacular. I am definitely going to share intimate details of my experiences. Since I have been so long in keeping my disease to myself, the aftermath seems to be constant flow of memories. I can recall details of my first hospital stay in 1987; down to the size of the battery my friend brought me for my dying Walkman. To add to the memory dump, I’m also now reliving this experience for the third time – a bit slower in motion, though, so there’s time to compare, “is this how I felt the last time?”
So, yes, I will feel most comfortable being specific about real life with kidney disease. My family has also helped me to gather articles that seem relevant to my request and the disease in general – I think some of them have managed to describe, in scientific and medically digestible ways, how very easy and safe it is to donate a kidney. And since you asked, and you’re so rad, I’ll upload some articles and statistics over the long weekend.
As Jason’s proud step-mother, I can attribute to the bravery and courage he has shown since the onset of the kidney disease that rocked his world.
It has been a long time coming, this asking for help when he needs it. He needs it more than ever, now, because it will be very hard for him to get a cadavar kidney, almost impossible. Dialysis will keep him alive and we are grateful for that…but he, as others like him, have earned the right to ask for this help.
When he was first stricken, his father and I wanted to donate a kidney for his but we were told that it wasn’t possible be a live donor. Modern medicine has made that possible. This time, we asked if we could donate so that we could trade our A kidneys for an O for Jason. Both of our doctors told us, frankly, that we’re too old. We are heartbroken that we can’t do this for our son.
But you can. If you are willing to consider this, a dear friend has a colleague who donated her kidney and wants to talk with anyone who will consider this. She has said it was the best thing she ever did in her life. If you contact me at firstname.lastname@example.org, I will put you in touch with her.
As Jason’s step-mother, I won’t beg. But I will urge you to consider this. Please, also, do everything you can to alert a wide audience to his need.
Thank you from the bottom of my heart.
Now that I’ve read Jason’s story, I realize I could never have helped him. But I can the 90% of people whose kidneys fail because of diabetes or high blood pressure. Preventing 90% of kidney failure would free up a lot of kidneys for transplantation. So although it’s not a kidney, publicizing my 90% cure might help you get a kidney sooner. See http://tinyurl.com/pucfku