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SPK (simultaneous pancreas and kidney) transplants

Transplants | Last Active: May 16 8:41pm | Replies (77)

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@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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Replies to "I would find it to be just helpful to know others who have gone before, as..."

@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.

@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?