All Type I and Type II diabetics~
I just wanted to drop you a line....I am not even sure if this is the proper platform for this. My story, is probably like hundreds of other stories, with different details in between. I received a double organ transplant on October 26, 2010 at The Mayo Clinic in Jacksonville. I don't necessarily want to dwell on my personal story as much as I would love to educate ALL diabetics (Type I and Type II) on organ donation and transplantation, a topic still not that popular, and how this medical procedure changes people's lives.
I am a Type I diabetic and was diagnosed at age 9. Over the years, the disease began to take its toll on my body. In 1990 I had laser surgery on both my eyes to save my vision and began to see a nephrologist on a regular basis as well, to help treat my renal failure. By February of 2009, I was hospitalized and had a peritoneal catheter implanted in my abdomen in preparation for PD (peritoneal dialysis). I began PD in March 2009 and was back to work within a few weeks. I continued to deliver the mail on the street daily (6 1/2hours of walking), while completing dialysis nightly.
I continued to work my carrier position full throttle during the day, and completed my dialysis each and every evening. In September 2009, I had a cataract removed from my right eye (diabetes related) and then again in March 2010 a cataract was removed from my left eye, also diabetes related.
I was listed on the pancreas-kidney transplant list (UNOS) at The Mayo Clinic in Jacksonville, Florida on December 3, 2008, and on the 693 day (October 25, 2010) the Mayo Clinic called, while I was casing up my route at 9:19 am to inform me they had two potential organs to give me. We rushed to get to Jacksonville and by 6:00 am on October 26, 2010 I was under the knife.
I have so many more details to share with you, but this is a brief overview of my life changing experience, and how it is possible to continue your life when faced by catastrophic circumstances.
I am so ready to return to work, a new man, capable of doing the things I haven't been able to do since I was only 9 years old. I hope that gives you a better idea of who and what I am. Once again, this could be a great avenue to educate all Type I and Type II diabetics on a topic still not that popular. Organ donation and eventual organ transplantation, has changed the lives of millions of people, and I am proud to say I am now one of those millions reaping the benefits of a second chance at a way more fulfilling life!! Miracles do happen...just look at me!!
Hope to hear from you soon, either way~
Juvenile Diabetic since September 1975~
16011 Emerald Cove Road
Weston, Florida 33331
Amazing story. I hope it works out well for you.
Thank you for sharing! We appreciate your point of you and sharing your story with us. :o)
I'm glad your story has worked out so well and wish you continued good health!
You expressed concern that organ transplantation isn't a "popular" topic. I think it's because it's not a good first route of treatment. The big issue is a limited number of organs available to transplant. Also, it's a major medical procedure to undergo an organ transplant and then take anti-rejection drugs. For the younger T1's who are getting diagnosed, the medical care available is pretty good. (Obviously not a cure, but getting better each decade.) So, I think we should think of keeping as tight control as possible as our best treatment. They still aren't sure why some people get complications and some don't, so it's hard to totally prevent them, but we can reduce the chances. I don't think organ transplantation is a reasonable treatment option for the great majority of us (w/o serious complications). I think many of us hope that stem cell research will change that though...
I have to be honest that I'm skeptical as to the reason for this post. This seems like a form letter just dropped off on the site - both because the profile was started the day this was posted, and because it's titled to "Type II" diabetics on a Type 1 site.
If the purpose is to truly educate us on the benefits of organ transplant over insulin therapy, there needs to be an honest assessment of your life post-transplant, as we all know there are serious trade-offs between insulin and anti-rejection meds. How are you taking to your anti-rejection medicine that you will be taking for the rest of your life? And how is this impacting the things you do on a daily basis as well as the things you're now doing that you "havn't done since you were 9 years old"? (btw, there is nothing about being diabetic that stops someone from doing nearly anything they want to do at any age)
I have to agree with Adam on this. I too am a bit skeptical as to why this was posted. Organ transplant is a serious medical procedure, and anti-rejection medication, from what I understand, can seriously effect life.
On the other hand, what would the ulterior motive be? Unless he's selling pancreases on the black market... (kidding).
I agree it is probably a copy and paste post, but it is very good information and very inspirational. I know several diabetics online who have had kidney and/or pancreas transplants. A few of them are living normal lives and are very happy. Others had to have additional transplants when the original transplants failed. It is a gamble for sure, but it can be so wonderful when it works.
Good point Adam.
And while I'm not knocking this guy's story whatsoever, your story suggests that control in the early part of your life might not have been that big of a priority and diabetes will take as hard as a toll on our bodies as it is has on yours. I think we already do a damn good job defeating diabetes a little bit at a time every day.
We defeat type 1 diabetes everyday by fighting to keep good control. For the newly diagnosed, keep good control and work your butt off to live a healthy lifestyle and transplant wont need to be necessary option for you.
For me living a life with tightly-regulated and well-controlled diabetes sounds more fun than living the post-major sugery life on anti-rejection medications.
I certainly don't mean to take anything away from his story. Sounds like he's had it tough as far as diabetes (also should have mentioned that poor control lead to those horrible complications), and I'm glad he found a solution that allows him to live a better life. But to be responsible on a forum such as this, we need both sides, and need to know what problems/complications he is having that are different from the one's we all have with insulin therapy.
So you don't have diabetes anymore?
This story is touching. I just got out of the hospital a couple hours ago for the second time due to my sugars beings so high. (DKA) they said i almost died which i honestly couldnt remember muchj. and i thank god for that. But i would like to talk to you more about this stuff. maybe you could give me some advice to keep me going. ohh and btw Im Autumn Minard. im fourteen years of age.Please right back!!
Autumn's message is exactly why drop-off posts like the one that started this conversation are irresponsible to not give the whole story. A fourteen year old should NEVER even be considering an organ transplant as the way to manage diabetes.
Autumn, if you want to give more information as to what is leading to your continued highs and hospitalizations, there are plenty of knowlegable people on here that would love to hear your story and do what we can help you figure out how to keep your numbers in check, and keep you healthy and out of the hospital!
Autumn, I agree with Adam. Please tell us more about your diabetes. Why do you think you had DKA? If you have good diabetes management, you will be very unlikely to ever have DKA again. I hope you have an endocrinologist (diabetes specialist) for your doctor.
well yeah everyone goes through hard times in life, right? and ive been for a while and a fourteen year old should know right from wrong. I DO! but i started to get off track, not having the motivation that i should. my ENDO says i have more knowledge about diabetes than most people, which i am thankful for. i just dont know how to deal with my stress, and diabetes at the same time. any advice? what did you guys do to get back on track, if you ever got off. I am ashamed of my decisions but the past we cant do nothing about but we can change the future right?
That's exactly right Autumn. If you have made it this far and you are OK, then there is no need to worry about the past. So start from scratch and gradually change your approach, a little bit at a time. Don't try to do it all at once. That could be overwhelming. Let us know what you accomplish in the week ahead.
i will for sure. today went great i had a family get together and my sugars all were under 140 thats like a dream come true to me, and im gonna keep up my good work thank you guys i will let you know how things go for me.
Thank you so very much for the kind and encouraging words. There is HOPE for ALL diabetics...if not organ or islet cell transplant, then even GREATER possibilities!! I am a firm believer we will see a CURE, not treatment, for DIABETES in our lifetime!! Organizations like JDRF and ADA are essential in the road to a permenant CURE for DIABETES!!
Day 85 post transplant and my SUGARS have NEVER been better!! I wish you the best as well.
I cannot thank ALL of you enough for the GREAT posts. I do not spend a lot of time on the Internet, as you can see, but when I do I try to make this site a priority!! I wish the very best for ALL of YOU!!
It is just too bad that you can't take an account of a person's life changing gift for what it is and instead turn it into a "bash-a-thon." For starters, I DID NOT POST THIS STORY MYSELF. I wrote to the JDRF and told them I had a story that I thought might shed some light on Type I diabetes and where we have come since I got diagnosed. In addition, I almost thought even responding to your particular post was a HUGE waste of my time, but I can see you have stirred up the hornest's nest.
I feel really bad for all the postings here from those of you who can't appreciate the story for what it is instead of reading more into it then there really is. Where does it say or even imply that organ transplantation is a treatment? Not too mention, even very disciplined diabetics, like myself, cannot prevent EVERYTHING this terrible disease can deliver. Not that you care, but you should sit down with my endocrinologist, nephrologist, and eye surgeon, as well as my dialysis nurse and ask them "WHAT KIND OF DIABETIC I was?" You might be surprised.
Any ways, enough of defending what I thought would be an inspiring post...I guess I have learned my lesson...some of you believe you are "home-based" endocrinologists.
I guess I better think twice before posting on this site. Too bad for those who really "GOT IT."
Hi Scott, thanks for finally coming back.
You'll notice my only issue with your story was how one-sided it was and the tone the message took. I was not the only person who questioned this, but if you feel the need to take it out on me that's fine. But it doesn't take away the fact that we still need to hear the trade-offs of this transplant. Yes, you don't need to do the insulin therapy you used to, but you are now taking multiple drugs for the rest of your life that have other set backs and side effects in how you live and the things you can/can't do. Yes, I think the post was irresponsible, and I, personally, was put off that there was no mention of these trade-offs, which then prompted a 14 year old think that a double organ transplant was her way to get rid of diabetes. If you are trying to help, you still need to post the other side of this story.
We would all appreciate if you would give us these other details of the trade off between insulin therapy and the immunosuppressants etc that you are now taking.