SPK (simultaneous pancreas and kidney) transplants

Posted by nikkispk @nikkispk, Apr 9, 2019

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!

Interested in more discussions like this? Go to the Transplants Support Group.

@2011panc

@benlam11 To make your life easier before/during/after transplant, get yourself as healthy as possible. Stop tobacco and alcohol, eat a healthy and natural diet (cook things from their natural state), reduce caffeine and sodas, and get as fit as possible (walking or swimming daily are the best start). Begin practicing cleanliness: sanitize countertops before, during and after use; designate separate cutting boards for vegetables and meat; stop using wooden cutting boards for meat; wash hands well and often; get used to having and using sanitizers; reduce use of perfumes, air fresheners, etc. (that may be masking odors rather than cleaning them); review your live plant situation and reduce to minimal care house plants; review your pet situation and arrange for someone else to manage bathing, brushing and urine/feces; look for and address any mold issues anywhere in your house; and set a schedule for cleaning heat/air vents/covers.

Issues for transplanted organs should be provided by your doctors at the time of transplant. You will be informed of the points of mismatch (for example, my donor was +CMV and I was -CMV) and instructed if/how to manage them. You will also be instructed what symptoms to watch for and report.

I have experienced many unexpected issues following my transplant because, I believe, I was a brittle Type I long-term diabetic and all this underlying issues that had been attributed as secondary to diabetes were now jumping out of the cupboard and saying, "Me! Take care of me now!"

Since I have a pancreas only, I cannot address any issues with any other organs. I do understand that each organ has it's own issues and each person has their own individual experiences and expectations.

You have a healthy interest in your personal health. One thing I would suggest, if you are interested, is to begin journaling. Many people have found it helpful. You can expect lapses of memory throughout the process, as you will be given anesthesia and pain medications that may alter your memory functions. A journal that you keep, even in an altered state, can help you piece everything together later.

Primarily my advice (and what works for me) is to turn your will and your life over to God and trust that He will take care of things when you cannot. That underlying belief, faith and knowledge has always served me well and helped me calm myself and press on. Blessings to you and all your supporters.

Jump to this post

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

REPLY

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.

REPLY
@realisticdad

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

Jump to this post

@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

REPLY
@rosemarya

@nikkispk, @benlam11, @marvinjsturing

Here is more information about Pancreas transplant from Mayo Patient Care & Health Information
Tests & Procedures>Pancreas transplant
https://www.mayoclinic.org/tests-procedures/pancreas-transplant/about/pac-20384783

Here is a dicussion about multiple transplants.
Transplant, multiple.
https://connect.mayoclinic.org/discussion/transplant-multiple/

Jump to this post

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!!

REPLY
@realisticdad

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

Jump to this post

@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?

REPLY
@nikkispk

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!!

Jump to this post

@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?

REPLY

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.

REPLY
@benlam11

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.

Jump to this post

@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

REPLY
@benlam11

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.

Jump to this post

@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!

REPLY
@marvinjsturing

Short history: Ten years ago, I was diagnosed as a Type II diabetic. Five years ago I was diagnosed with pancreatic cancer. In my Whipple procedure, the surgeon removed most of my pancreas. The pancreas was not reattached to my digestive system and I became a Type I diabetic. A rare reaction to the chemo gave me a disease that damaged my kidneys. For the last 4 years, I have had Stage 4/5 CKD. Last August, I asked Mayo Rochester about a pancreas/kidney transplant. The doctor told me that because of my size (6 feet 3 inches/230 pounds) that a transplanted pancreas would not produce enough insulin to cover my needs and I would still have to give myself insulin shots. He also said that internal scarring from my Whipple would make the pancreas transplant very difficult. Still working on a kidney transplant.

Jump to this post

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.

REPLY
Please sign in or register to post a reply.