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.

@jgloede9

Hello! Thanks for the warm welcome! Congrats on your transplant as well. I always feel like getting a kidney and pancreas is is so much less of a journey than what you had to endure with getting a liver and kidney! Happy to hear you are doing well. So far every year on my anniversary I spend the day in clinic for my yearly follow up. I usually end the day hanging out with family and friends and speaking to my donors family. We are actually very close and talk all of the time. I had one huge incision, that starts at the bottom of my sternum and runs to my pubic bone. I'm so happy it healed so well! How many years have you had your transplant now?

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@jgloede9, I celebrated my 10th anniversary in April. Thanks for asking. I received mine at Mayo Rochester. The difference between the 2 photos is remarkable! Were you on dialysis prior to your transplant?

Jennifer, What was the most surprising thing that you remember about your transplant experience?

I want to share some transplant discussions where your experience with a transplant will help those who are now waiting. Would you consider sharing. If you click on the link, you will be taken directly to the discussion.
-Did you have to travel a distance to get to UW for the transplant?
Here is a discussion - Waiting for the Call: What needs to get done at home before you go?
https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/

-Do you remember preparing for your call to the hospital?
Here is a discussion - Packing question: What did you have ready for "the call"?
https://connect.mayoclinic.org/discussion/packing-question/

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@rosemarya

@jgloede9, I celebrated my 10th anniversary in April. Thanks for asking. I received mine at Mayo Rochester. The difference between the 2 photos is remarkable! Were you on dialysis prior to your transplant?

Jennifer, What was the most surprising thing that you remember about your transplant experience?

I want to share some transplant discussions where your experience with a transplant will help those who are now waiting. Would you consider sharing. If you click on the link, you will be taken directly to the discussion.
-Did you have to travel a distance to get to UW for the transplant?
Here is a discussion - Waiting for the Call: What needs to get done at home before you go?
https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/

-Do you remember preparing for your call to the hospital?
Here is a discussion - Packing question: What did you have ready for "the call"?
https://connect.mayoclinic.org/discussion/packing-question/

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I was never in dialysis. I tried very hard to stay off from it! I was at 12% function at transplant. I am very close to both Rochester an Madison. I am in La Crosse WI. Is there a way I could give you my phone number? I love talking about my journey but with my retinopathy and my neuropathy, talking at length via messaging is rough!

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@jgloede9

I was never in dialysis. I tried very hard to stay off from it! I was at 12% function at transplant. I am very close to both Rochester an Madison. I am in La Crosse WI. Is there a way I could give you my phone number? I love talking about my journey but with my retinopathy and my neuropathy, talking at length via messaging is rough!

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@jgloede9, I want to respectfully decline sharing my personal phone number. Mayo Connect is a socal media sharing network and as a volunteer mentor, it is my preference to communicate via this public forum. However, there is a PM -Private Message option (envelope icon top right of page) for sharing such information should you ever need to use it.

I drive thru LaCrosse WI every year on my way to Mayo from KY. Are there any transplant patients in the area? Or is there an Organ Donor Affiliate group that meets in the area where you can speak face to face with others?

I am still interested in hearing more about your journey . Are you able to share in small segments?

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<p>Hi yall... I'm listed for kidney transplant at two hospitals but I really am striving for a pancreas transplant as well. I have a referral at mayo in Jacksonville. I'm just curious how long does it usually take to get the evaluation?</p>

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@linnea84

<p>Hi yall... I'm listed for kidney transplant at two hospitals but I really am striving for a pancreas transplant as well. I have a referral at mayo in Jacksonville. I'm just curious how long does it usually take to get the evaluation?</p>

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Hi @linnea84. Everyone's is different. I waited two months for mine. Mine was a liver transplant though.

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@linnea84

<p>Hi yall... I'm listed for kidney transplant at two hospitals but I really am striving for a pancreas transplant as well. I have a referral at mayo in Jacksonville. I'm just curious how long does it usually take to get the evaluation?</p>

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Hi @linnea84 and welcome to Mayo Clinic Connect. @tjgisewhite is right. How length of the wait for an evaluation is different for everyone. You'll notice that I moved your message to this existing discussion about simultaneous pancreas and kidney transplants or pancreas only transplant. I did this so you can meet other members who are waiting or have had SPK transplants, like @nikkispk @2011panc @benlam11 @cehunt57 @tiffersann @jgloede9. Simply click VIEW & REPLY to read through the past posts.

While we wait for others to chime in, you may also be interested in reading this discussion:
- Transplant Evaluation - What to expect https://connect.mayoclinic.org/discussion/transplant-evaluation-what-to-expect/

Linnea84, can you tell us a bit more about you? What led to your needing a kidney and pancreas transplant?

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My only comment at this time is that Mayo evaluates each patient and puts them on the transplant list according to needs. If, as in my case, all tests align except one, you will receive a transplant sooner than if you have a number of issues to match or work around. Some of the parameters I am aware of for SPK include: physical fitness, mental fitness, blood type, current function of native organ, and general health of individual. There are many more items checked, but the level of your fitness and health you can work on now in order to be prepared as well as possible for a transplant. OR, as in my case, put off a transplant indefinitely. Blessings on your journey.

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@2011panc

My only comment at this time is that Mayo evaluates each patient and puts them on the transplant list according to needs. If, as in my case, all tests align except one, you will receive a transplant sooner than if you have a number of issues to match or work around. Some of the parameters I am aware of for SPK include: physical fitness, mental fitness, blood type, current function of native organ, and general health of individual. There are many more items checked, but the level of your fitness and health you can work on now in order to be prepared as well as possible for a transplant. OR, as in my case, put off a transplant indefinitely. Blessings on your journey.

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As far as I know, it's the same criteria for kidney transplants.

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@linnea84

<p>Hi yall... I'm listed for kidney transplant at two hospitals but I really am striving for a pancreas transplant as well. I have a referral at mayo in Jacksonville. I'm just curious how long does it usually take to get the evaluation?</p>

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@linnea84, What have you heard about your Mayo referral? Is there any news about your evaluation appointment?

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@rosemarya

@linnea84, What have you heard about your Mayo referral? Is there any news about your evaluation appointment?

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I have not heard anything yet. I'm being proactive and have scheduled a stress test and echo so I can have them done. Just waiting to hear from mayo now. Hopefully won't be too long. Thanks for checking.

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