SPK (simultaneous pancreas and kidney) transplants
Hello! I am listed for SPK at MayoClinic in Jacksonville Florida. I have not seem anyone talking about any SPK or even pancreas only transplants. I know we are rare, but is anyone else out there?? Love to discuss the experience!
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Hi Rosemary. That was informative thanks. I'm 50. Type 1 diabetic for 39 years. Was always pretty good with it but an athlete my entire life not an excuse but I did struggle at times. Also a successful happily married athlete at age 40 when I had 4 unexplained strokes. I'm lucky to be here. Had to learn to talk and walk again. Took 2 1/2yrs of therapy. Was told I would need a cane or walker for life. Have 3 kids. My only daughter was 5. She couldn't run to me and jump into my arms. That was my motivation. I can run now. Stage 2 dementia and a multitude of other issues. In September I fell 10ft landed on head cracked my skull. Has given me a lot more to deal with. So I'm 5 for 5 surviving brain injuries. I'm not religious at all but so very appreciative to be here. Everyday is a great day. A lot is difficult and I do get bummed. I miss working but I worked hard and thankful I provided. My awesome wife took the opportunity,since I love being a Dad, to further her career.
I want to get a pancreas transplant. I'm very nervous i won't qualify so I haven scheduled an appt.
Well that's most of my story I think. What do you think? You can say anything it's impossible to offend me. Thanks
You won't ever know if you don't try. If you get turned down, and you have the funds, you can always try another location. I had a friend that needed a liver transplant and his age kept him from qualifying at Baylor. He found a transplant center in another state and received his transplant. He was 72 but in fabulous shape. He's now in his 80s and doing quite well. Don't give up and all they can say is no. By the way, My name is Ann and I'm a liver transplant recipient from 2/2007 and I'm currently 56. Got my liver at 44.
@realisticdad Your story is amazing, you are very lucky to be here. I hope you are able to get your pancreas transplant. As @annmariaa said, you won't know if you don't try. Some regions can transplant at lower scores so look into that too. I was told when I first qualified for a liver transplant that I might want to look at a couple of other regions. Happily, my transplant came through sooner than anticipated in September 2016 and all is well.
JK
I am very excited, there is a woman in one of my support groups that just had her SPK at Mayo Jax a few days ago!! I hope to see her up there soon!!
@realisticdad, I think that you have an admirable attitude and an inner strength to achieve what you have, in spite of the barriers that have been set up in front of you. I can feel the love and support that exists between you and your lovely wife and children. And I can certainly understand your desire for a transplant (if needed) and your hesitancy about scheduling an appointment. My 'thinking' is that I don't know anything, except to encourage you to make some phone call inquiries about appointment, and to let the medical experts decide whether or not a transplant is in your best interest. Does that sound reasonable to you?
@nikkispk, That is so exciting! I hope that you get to meet her. If you do meet her, would you tell me about your experience?
I was deferred at the Mayo in Phoenix as they found my lt carotid artery blocked 90% and my rt 50%. Additionally my A1c was over 10 and it must be brought down as well as losing 20lbs. So next it will be off to the Mayo and cardiology in the next few weeks. I'm thankful they are so thorough and give me and themselves the best chance for success.
@benlam11 You sound very encouraged. I hope you can get to work in losing that weight and getting your A1c down. When it comes to losing weight, I am very good at it, or was when I was waiting for my liver transplant. Right now I am not as good at it as I was then, but if you need any support or help please feel free to ask.
I have frequently mentioned how helpful I found the app myfitnesspal to be. If you follow it, and are true to it (if you are not true to it you are only cheating yourself) it makes you very conscious of everything you put in your mouth. That along with getting more exercise helped me to lose between 40 and 50 pounds. Prior to that I had very gradually lost about the same amount so overall I lost about 90 pounds. I also used a fitness tracker, at that time I had a Misfit, and that kept me encouraged about exercising. My third tool was my scale which gives a gauge of fluid and BMI. If my weight went up a bit but I noticed that my fluid did also I realized that was the cause. That actually happened today, I was up a pound. The scale measures in tenths of a pound so even if you only lose a tiny bit it shows.
If you are anything like me, any aid that keeps you honest and motivates you is helpful.
JK
@benlam11, I’ve forgotten what kind of transplant you are pursuing, but when I saw your post it reminded me of my father-in-law. I want to share his experience with you to encourage you. Dad had ESRD and needed a kidney transplant. He had previously had heart bypass surgery and a valve replaced. He also had blocked carotid arteries. He underwent carotid endarterectomy on both sides. He ended up getting his kidney transplant at age 76. My daughter/his granddaughter was his living donor!
Honestly this baffled me. I am 5’5 and 220 lbs and I am listed for SPK. And they put the new pancreas in away from the old one, at least in my hospital. The old one would not be touched.