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.

@mnjp0623

How long did you wait for your transplant ?

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mnj0623 Hi! I am Marian and my daughter is Marlo (53)she is waiting for a pancreas and kidney transplant, we live in Glendale Az. So happy to meet you! You’re going to love the Mayo Clinic here, couldn’t be a more finer group of professional and caring people. Love my daughter is in their hands and so does she. Has received two calls but the pancreas wasnt right, we pray for and are so grateful for the donors and their families, we are new to group and have little tech experience, trying to learn. Are you getting pancreas and kidney? We’ve learned a lot, packed her bag, I have a journal so journaling everything, in all honesty I am a little scared, she is not she is so excited, so many blessings to you and we will include you in our prayers.

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@mariancauwel

mnj0623 Hi! I am Marian and my daughter is Marlo (53)she is waiting for a pancreas and kidney transplant, we live in Glendale Az. So happy to meet you! You’re going to love the Mayo Clinic here, couldn’t be a more finer group of professional and caring people. Love my daughter is in their hands and so does she. Has received two calls but the pancreas wasnt right, we pray for and are so grateful for the donors and their families, we are new to group and have little tech experience, trying to learn. Are you getting pancreas and kidney? We’ve learned a lot, packed her bag, I have a journal so journaling everything, in all honesty I am a little scared, she is not she is so excited, so many blessings to you and we will include you in our prayers.

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Live in Tucson AZ I am waiting on a liver transplant
Very happy to meet you so excited for your daughter keeping a journal is a great
idea think I my do the same
prayers for you guys as well
stay positive

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@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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@2011panc Hi! Wow!I found this great, I am Marlo’s caregiver (mom) but I loved all ur suggestions, Marlo diet is very good as I am eating healthier, trying to exercise a little more and trying to keep things sanitized, I am older and can’t do everything, but many of ur suggestions help, I wonder Marlo has the greatest positive spirit, praying it always remain after transplant, all transplant patients have such courage such a example for all of us. Pray that God always gives us caretakers strength, kindness and empathy. Blessings to you.

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@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, I'd like to add my welcome. To connect with other members who have experience with liver transplant, you might wish to start with these discussions:
- Liver transplant - Let's support each other
https://connect.mayoclinic.org/discussion/liver-support-group/
- When liver is available for transplant how much time to arrive?
https://connect.mayoclinic.org/discussion/when-liver-is-available-for-transplant-how-much-time-we-have-to-arriv/
- It's not all about the MELD Score
https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/
To help me connect you with others, may I ask what condition led to your needing a liver transplant?

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@colleenyoung

@mnjp0623, I'd like to add my welcome. To connect with other members who have experience with liver transplant, you might wish to start with these discussions:
- Liver transplant - Let's support each other
https://connect.mayoclinic.org/discussion/liver-support-group/
- When liver is available for transplant how much time to arrive?
https://connect.mayoclinic.org/discussion/when-liver-is-available-for-transplant-how-much-time-we-have-to-arriv/
- It's not all about the MELD Score
https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/
To help me connect you with others, may I ask what condition led to your needing a liver transplant?

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Hello Colleen support each other is a great place to start I will check out these other
sites for various discussions very nice to meet you

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@mariancauwel

@2011panc Hi! Wow!I found this great, I am Marlo’s caregiver (mom) but I loved all ur suggestions, Marlo diet is very good as I am eating healthier, trying to exercise a little more and trying to keep things sanitized, I am older and can’t do everything, but many of ur suggestions help, I wonder Marlo has the greatest positive spirit, praying it always remain after transplant, all transplant patients have such courage such a example for all of us. Pray that God always gives us caretakers strength, kindness and empathy. Blessings to you.

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Hi, @mariancauwel. I have been thinking about you and your daughter. I know that the waiting is long and seem unending, but it sounds like you have quickly been able to adjust to your caregiver/mom role. You made me laugh when I read that you are now eating healthier, along with Marlo, because I could say the exact same thing about my husband!
I believe that Marlo's positive spirit and prayers will remain and even be strentghened after the transplant.
From experience, I know that being a mom and caregiver is challenging and rewarding role. How are you feeling physically? Emotionally?

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@rosemarya Hi my sweet friend, Marlo had her transplant, we are so happy, grateful and blest! I loved your words, I am not going to be able to talk too much because I will try to be as good of caregiver as all of you, in quiet time I read all your postings, just can t answer a lot until she’s on her way..your all so brave, I am going to keep that big binder Mayo gives when they leave next me and hopefully she just thrives, we found Mayo Clinic to be a Miracle Hospital filled with a Miracle staff especially a Nurse named “Lizzi”, thank you for all the things everyone has shared I hope to be back with you all soon. Your an Angel Rosemary

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@mariancauwel

@rosemarya Hi my sweet friend, Marlo had her transplant, we are so happy, grateful and blest! I loved your words, I am not going to be able to talk too much because I will try to be as good of caregiver as all of you, in quiet time I read all your postings, just can t answer a lot until she’s on her way..your all so brave, I am going to keep that big binder Mayo gives when they leave next me and hopefully she just thrives, we found Mayo Clinic to be a Miracle Hospital filled with a Miracle staff especially a Nurse named “Lizzi”, thank you for all the things everyone has shared I hope to be back with you all soon. Your an Angel Rosemary

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Ohhh Congratulations!!!!! This is wonderful news❤️
Are you at Mayo Rochester? Do you know how long you will be there?

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@rosemarya

Ohhh Congratulations!!!!! This is wonderful news❤️
Are you at Mayo Rochester? Do you know how long you will be there?

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@rosemarya thank you, we are at the amazing Mayo Clinic in Glendale (Phoenix) Arizona. It’s a Miracle Rosemary, we don’t know what’s coming, but being part of this support group means everything to me because I don’t feel as brave as Marlo, I am more of a worrier but I do know everything is in Gods hands and we trust Him plus we have good family and friends but know Marlo has to fly, we are just supporting her, I know we just have to take one step at a time. Thank you for caring, always in our prayers as so many are in our caregiver support group.

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@mariancauwel

@rosemarya thank you, we are at the amazing Mayo Clinic in Glendale (Phoenix) Arizona. It’s a Miracle Rosemary, we don’t know what’s coming, but being part of this support group means everything to me because I don’t feel as brave as Marlo, I am more of a worrier but I do know everything is in Gods hands and we trust Him plus we have good family and friends but know Marlo has to fly, we are just supporting her, I know we just have to take one step at a time. Thank you for caring, always in our prayers as so many are in our caregiver support group.

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Just wondering because I am scheduled for appointment in Rochester soon.
Trust me, as a mom, the care giver role is unlike anything else. For me, it was adult son with spinal cord injury nearly 4 years ago. Our miracle is that he is beginning his new life and career with the assistance of a cane and walker. Your daughter will be ready to fly when she gets stronger 🦋

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