1. < Transplants

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.

Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Apr 3 12:26pm
In reply to @marvinjsturing "Short history: Ten years ago, I was diagnosed as a Type II diabetic. Five years ago..." + (show)
@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.

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@marvinjsturing I’m reviewing this discussion from start to present. You had a very full and daunting plate: diabetes, CKD and pancreatic cancer. How are you now?

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Cheryl, Volunteer Mentor | @cehunt57 | Apr 3 1:22pm
In reply to @jgloede9 "I was never in dialysis. I tried very hard to stay off from it! I was..." + (show)
@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’m reviewing this discussion start to present. I had a pancreas alone transplant in 2005. After the transplant my retinopathy reversed. My peripheral neuropathy went away and my autonomic neuropathy (gastroparesis) improved. How are you now?

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1 reply
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Cheryl, Volunteer Mentor | @cehunt57 | Apr 3 2:12pm
In reply to @mariancauwel "I would find it to be just helpful to know others who have gone before, as..." + (show)
@mariancauwel

I would find it to be just helpful to know others who have gone before, as I have questions I can go to. This is a silly question but, do you have a certain time you get together as a group on this site and then everyone one sits in, or is it totally individual? The waiting is ok, just want to be prepared for Marlo’s transition, she is the sweetest. Will her stomach hurt terribly for how long? Will she be comfortable in bed or couch, I know go slow with diet, fluid, soft, I just want to have right food on hand. Thank you for your help.

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@mariancauwel we’ve been in contact before in a different discussion regarding your daughter’s upcoming SPK. I’m assuming she is now listed and the “waiting for the call” is underway. That is the hardest part. I think even harder for you (the heart of a mom) than Marlo.
In regards to pain, comfort and eating post transplant your best option might be to offer gentle suggestions to Marlo. You can see what appeals to her. It is nice to have a variety of alternatives to pick from. Too many options can be overwhelming however. Stay creative & flexible. An idea might seem nice one day and gross the next. Marlo may have some days when nothing sounds good and she can’t figure out what she wants and needs. You just have to endure those days as best as possible. Caregiving is tough and requires patience.
Mayo Clinic Connect has other groups and discussions that focus on caregiving. I don’t know if any are specifically related to post transplant care but you might find something helpful. I don’t know how to post links but if you have better tech skills than I do I’m sure you’ll find help.
My thoughts and prayers continue for you and Marlo.

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tasher3433 | @tasher3433 | Apr 3 2:52pm
In reply to @cehunt57 "I had a pancreas only transplant in 2005. At that time my chronic kidney disease (CKD)..." + (show)
@cehunt57

I had a pancreas only transplant in 2005. At that time my chronic kidney disease (CKD) was only mild - moderate and a kidney transplant was not recommended. Fast forward to 2016. My kidney function had decreased and my pancreas function was not as good as it once was. I went through pre-transplant evaluation this time for simultaneous pancreas kidney transplant. I was approved for kidney transplant but was told that pancreas transplant was not necessary. I’ve been looking for a living kidney donor ever since. Now 7 years later neither the pancreas or kidney function are great. I’m still interested in SPK but when I had a pre- transplant review this past March I was told that I’m too old. I’m 66 and apparently there is an arbitrary 65 cut off. I think my quest for SPK lost ground 2020 - 2023 during the worst of the pandemic years and I aged out! My point is transplants are a big deal. Multiple transplants even more so. Do whatever research you feel you need to and pick a transplant center you feel you can trust and will work with you as an individual. Take into account pre-transplant work up, the transplant itself and follow up. My transplant in 2005 was at a different center than what I’m working with now (Mayo). I heartily recommend Mayo (any of the main three) because I think it is advantageous to extend the network across the country. The stellar Mayo reputation precedes them.

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My husband was deemed “ too old” for a kidney transplant at age 72. Mayo Scottsdale and our donor daughter put the kibosh on that! Not withstanding, covid, travel, etc, I wish I had asked more questions regarding mood swings, tiredness etc. I, of course thought the energy level and good humour would instantly return🤣. Not so. But 4years out, I am so grateful for the naps, the shared jokes, family and Mayo. They were tireless in adjusting meds and follow ups.
Every day is different. Allow yourself time, as a caregiver. It’s not easy and very one has a different experience. Enjoy the good days, they will become more frequent! Best wishes to you all.

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Jennifer G | @jgloede9 | Apr 3 5:56pm
In reply to @cehunt57 "@jgloede9 I’m reviewing this discussion start to present. I had a pancreas alone transplant in 2005...." + (show)
@cehunt57

@jgloede9 I’m reviewing this discussion start to present. I had a pancreas alone transplant in 2005. After the transplant my retinopathy reversed. My peripheral neuropathy went away and my autonomic neuropathy (gastroparesis) improved. How are you now?

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My neuropathy is a bit better and my gastroparesis is MUCH better. I do have a lot of issues with UTIs though and seems as though neuropathy of the bladder. I am following up with urology to address this! I am happy to hear you are doing well!!

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 3 8:39pm
In reply to @mariancauwel "I would find it to be just helpful to know others who have gone before, as..." + (show)
@mariancauwel

I would find it to be just helpful to know others who have gone before, as I have questions I can go to. This is a silly question but, do you have a certain time you get together as a group on this site and then everyone one sits in, or is it totally individual? The waiting is ok, just want to be prepared for Marlo’s transition, she is the sweetest. Will her stomach hurt terribly for how long? Will she be comfortable in bed or couch, I know go slow with diet, fluid, soft, I just want to have right food on hand. Thank you for your help.

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@mariancauwel, You are asking the exact questions that I would have asked if Connect was available in 2009!
There is not a regular time to get together. Our groups are on-line groups and are available 24-7 for comments or for reading. If you scroll thru the Transplant Groups, you will see a variety of discussion topics that are accessable to read, ask questions, make a comment,and learn or be comforted by someone's experience.
I can understand that you want to be as prepared as possible. And I can understand the difficulty of waitntg. I remember how slowly the clock ticked awaythe hours. My husband and I used to keep a notebook handy where we added our questions,
After the surgery, her stomach, surgical area will hurt - but the doctors will control the pain so that she can be comfortable. She will need to let the nurse know if there is pain so that the pain med can be adjusted. I had a pump that was connected to my IV and I could control the level of pain med. It was set to allow for a limited amount, so there was no fear to take too much. The nurses were experts at fluffing my pillows to make me comfortable, and showed my husband how to change my bandage over the incision, because I didn't want to see it!
I actually thought that I would need a hospital bed in my dining room when I returned home -and thought that I would be wearing pj's. I was wrong! A regular bed and loose fitting comfortable (at the waist) sweat pants are what she will be comfortable wearing. If she prefers a couch, that is okay.

My timing after surgery was 7 days in hospital, then 2 weeks as out patient when my husband and i stayed at the Gift of Life transplant House in Rochester. on day 21 after my surgery, we were released to drive home to Kentucky. Times are adjusted according tot the patient.
If you are comfortable to share, how old is your daughter? Is she able to ask questions to her transpant team? Are you given the opportunity to ask questions and get answere?

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mnjp0623 | @mnjp0623 | Apr 15 3:41pm
In reply to @2011panc "@benlam11 To make your life easier before/during/after transplant, get yourself as healthy as possible. Stop tobacco..." + (show)
@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.

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Waiting for approval for liver transplant I really enjoyed your words of wisdom makes a lot of sense
Put it all in Gods hands

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 16 7:22am
In reply to @mnjp0623 "Waiting for approval for liver transplant I really enjoyed your words of wisdom makes a lot..." + (show)
@mnjp0623

Waiting for approval for liver transplant I really enjoyed your words of wisdom makes a lot of sense
Put it all in Gods hands

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@mnjp0623, Welcome to Connect where members share their experiences to support others. I am happy that you have joined us and shared that you are approaching approval for a liver transplant.
I am a liver/kidney recipient in 2009 at Mayo Clinic Rochester. Are you already a patient at a transplant center? Have you been scheduled for an evaluation for approval to be placed on the UNOS waiting list? Or have you completed the evaluation process and are waiting for the final decision? What do you want to ask?

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1 reply
mnjp0623 | @mnjp0623 | Apr 16 7:35am
In reply to @rosemarya "@mnjp0623, Welcome to Connect where members share their experiences to support others. I am happy that..." + (show)
@rosemarya

@mnjp0623, Welcome to Connect where members share their experiences to support others. I am happy that you have joined us and shared that you are approaching approval for a liver transplant.
I am a liver/kidney recipient in 2009 at Mayo Clinic Rochester. Are you already a patient at a transplant center? Have you been scheduled for an evaluation for approval to be placed on the UNOS waiting list? Or have you completed the evaluation process and are waiting for the final decision? What do you want to ask?

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patient at Mayo clinic in phoennix/scottdale I went through the evaluation process waiting to go on UNOS list
How long did you have to wait for your transplant ? this is all new to me.

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1 reply
mnjp0623 | @mnjp0623 | Apr 17 10:07am
In reply to @mnjp0623 "patient at Mayo clinic in phoennix/scottdale I went through the evaluation process waiting to go on..." + (show)
@mnjp0623

patient at Mayo clinic in phoennix/scottdale I went through the evaluation process waiting to go on UNOS list
How long did you have to wait for your transplant ? this is all new to me.

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How long did you wait for your transplant ?

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