SPK (simultaneous pancreas and kidney) transplants

@rosemarya oh thank you for your message, I found it to be so great, so grateful your a mom and a recipient your are so understanding, we kinda thought once thru the surgery you just continued to get better, it’s truly different for everyone mostly it’s good and staying in close touch with ur follow up appointments is so important, we were just adviced from her doctor the very same thing and she did eat ice cream, a fruit-protein powered smoothie, and cinnamon apple oatmeal, actually all things she never ate before, but one day at a time. We will be patient, delight in every little thing of progress. It’s truly just so nice to know you’re out there, all of you. It is individual and as we learn more we will share. Your just the best! Thank you Marian.

@mariancauwel, I am always happy to see a message from you and hear about your daughter's progress. I feel fortunate that I can respond as a recipient and as a mother. I know how we mothers, wonder and worry about our children, no matter what age they are. (How is that for unplanned timing with Mother's Day?)

It can be a slow process for a patient to regain weight and muscle tone after their transdplant surgery because of the rugged pre-transplant period, and the recovery from surgery. In addition there are strong medications that are required to keep the organs safe and healthy as they and our bodies get more comfortable with each other. Your daughter most likely does not have an appetite due to the medications (which will be adjusted over time as indicated by routine labs.)

She is just a few weeks after surgery, so as long as she is feeling okay, staying hydrated, and taking her medications, she is doing great. It is likely that her meds are the reason that her favorute foods don't sound good to her. If you are concerned about her nutrition, which is very important, please talk to her transplant coordinator. She will be the best one to advise you about your daughter's situation because she will know her lab results, medications, and any specific information related to pancreas/kidney recovery and healing. There might be need of a medication adjustment or adding a vitamin to her diet. But only add vitamin if doctor says to do it!

Mariam, Does she like ice cream? That is what I was encouraged to eat!

Liver or Pancreas or Kidney, Lungs, Heart Transplant - We all share some similar concerns and are able to support each other. Here is a discussion that you will be interested in:
- Loss of taste after liver transplant
https://connect.mayoclinic.org/discussion/loss-of-taste-after-liver-transplant/

@rosemarya I need ur help, she’s losing a little weight, trying she’s not terribly hungry, wants ti eat the best food for her new organs, what do I give her to nourish her and her new organs, she has kidney and pancreas, she had transplant 4/26, she doesn’t like ensure any can supplements, any ideas to help? Grateful for your thoughts, we are just so new, just to let you know, she’s thin, ate very clean mostly salad, nuts, fruits vegs, protein, chicken, turkey, peanut butter, now most doesn’t sound good to her. Thank you.

@colleenyoung Hi haven’t had time to talk, Marlo had her kidney and pancreas transplant at Mayo Phoenix Campus, April 26, wow that hospital and staff are Miracles, Marlo has had going forward and then a little step back, we thought once u had it it was a continual going forward, but it is extremely individual, Marlo has always been a real mover but now she (we) have to learn to be patient, when organs were transplanted there was blood supply, which is so great, hasn’t had insulin, dialysis, and kidney is working by the grace of God, just so much to say, but caregiving is busy, so can’t talk often right now, please continue to pray for us as we do all of you, hope to talk again soon. Blessings, Marian

Simultaneous kidney pancreas (SPK) transplants are rare. It can be helpful to talk with someone who has been through it, just like the support you are getting on this forum. For Florida patients, the Transplant Social Work team can help pair former SPK patients with patients waiting for transplant.

If you're interested in being paired with another SPK patient or, if you've had an SPK transplant and want to be paired with a new patient, please contact your Transplant Social Worker.

@nikkispk @linnea84 @tiffersann, how are you doing? Would love to get an update from you.

@mariancauwel, what wonderful news about your daughter's successful SPK transplant at Mayo in AZ. I know you're busy being the caregiver. It's a vital job. It's obvious you're good at it (worry comes with the job). As you read our messages of support betwixt and between as you're able, please post any questions or concerns you have along the way. We're here.

Put in Gods hands best remedy

@rosemarya How beautiful for your son, what a wonder caregiver you are, we are at the beginning and your son thru lots of little steps is starting to soar both u and he are amazing. We haven’t had our first crisis yet but I know it’s a journey.. with many caregivers and patients we start one step at time, so grateful your all out there.

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 🦋

@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.

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