Interested in how other caregivers survive

So helpful, @dianeberkey. Thank you. Did you have an occupational therapist visit your home and make these suggestions? Or did you figure these things out as the necessity arose?

We figured it out as the need arose. If your loved one needs to travel, you can take the bed rail along.

New at this: most important food to have on hand when pancrease and kidney transplant patient comes home. Appreciate input.

Hi @mariancauwel,
This is a good question. What food should one have on hand with a kidney transplant patient comes home?
I'm tagging @gingerw @rosemarya @tasher3433 @katebw to name a few people to bring into this conversations.

Marian, you might also wish to check out this related discussion:
- Transplant Caregiver Advice: Got Tips to Share?
https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
When is your kidney transplant patient coming home?

@mariancauwel Welcome to Mayo Clinic Connect!

When a transplant patient comes home, having quality food available is critical. Some people may find everything tastes good, and overindulge. Others may find they aren't too interested in eating. Water is always good. In my husband's case, we basically continued the same renal diet he had been on, and eased into a more relaxed food plan over the course of the first month. He was enamored with an ice cream bar! His transplant team offered guidelines, also. One thing is to not stress the patient's digestive system! Because the immune system is compromised, they will recommend not eating out, especially at buffets and such. We found that having several choices available made sense, so he could eat what appealed to him.

Hope this helps,
Ginger

@dianeberkey, My transplant was in 2009 when I received a liver and kidney at Mayo Rochester. I hope that you have already read the post that @gingerw has shared because it is a great summary of what to expect when the transplant patient return home. I want to add that while in the hospital for 7 days afterward, my nurses provided information to me and my husband as they prepared us for discharge to outpatient care to Gift of Life Transplant House - our home away from home due to distance.

I have located a copy of some emails that my husband saved/printed/ and saved into a huge binder. Below are some excerpts of my experience after after going "home" (Gift of Life Transplant House , Rochester MN) for days 8 - 21 post transplant transplant surgery.
(it looks like I even had the opportunity to make an occasional splurge)

- ..."I have made a smooth transition from hospital to normal life. I am getting stronger each day. I am eating well (my sense of taste has returned, plus medications are making me hungry), taking liquids, walking, and not much bothered by pain...I have a lot of weight and muscle to rebuild, but doctors say that will come. Right now concentrating on resting, eating, getting activity to heal from surgery...I take a nap several times a day...Day 10 : Today is beautiful. We slept late and made bacon, eggs, and pancakes for breakfast. Then relaxed for a while...Day 15 - to hometown friends: Rosemary is being advised to adhere to some strict food preparations and guidelines. Therefore she has to monitor what she eats and the ingredients. Because of her immunosuppression and increased risk of bacteria and infection, we ask that no food be delivered to the house when we return home ..."

Guidelines should be provided for you that are specific to the patients needs and medical history. Will you be at Mayo Clinic for transplant?

These comments so very helpful, thank you for sharing with Marlo and I, will pray for u.

@mariancauwel welcome to Mayo Clinic Connect. I don’t usually follow the Caregivers group but I heard about you from Rosemary, Volunteer Mentor, @rosemarya. She is a real gem and has had two transplants herself (liver and kidney). She sent me your Mayo Clinic Connect handle and post because I am a post pancreas transplant patient (2005). I am currently anticipating a kidney transplant at some point.

I love transplant stories and am truly committed to the process. In regards to what to eat upon returning home after the surgeries I think @rosemarya and @gingerw (another gem) already offered up some great advice. In addition to that I would recommend advancing the diet SLOWLY such as clear liquids, full liquids, soft / bland solids to normal. I say this not so much about transplants but because these are major surgeries. You really don’t want to rush the digestive system to get back to normal too quickly. The transplant team should include a nutritionist / dietician that can advise on details relevant to pancreas and kidney diet. After my pancreas transplant I found that I was very comfortable continuing to follow my diabetic eating plan. I was just extremely grateful that my blood sugars were FINALLY controlled. Prior to the transplant NOTHING worked and I had lots of diabetic complications. Thank God (literally) things are better now.

So are you the future transplant recipient or is Marlo? Where is this going to happen? Are you on a UNOS list awaiting “the call”? This is really exciting! Once it happens things move quickly. It can be overwhelming but we are here and happy to help however we can. I will personally keep you and Marlo in my thoughts and prayers. I look forward to hearing another successful transplant story in the near future!

Hi everyone, I’m so grateful to have found this space for caregiver support. My 31 yr old husband is currently in the ICU (for about 2 months now) awaiting a liver transplant. He was just approved by the hospital MRB team on Friday. I hope to get more information Monday as it’s been the weekend and I have many questions. I have been very stressed out and overwhelmed, as there have been many complications so it has been quite the rollercoaster. I know I’ve been neglecting myself, I am finding it difficult to eat, sleep, have gone on FMLA for work and attempted to work last week but it was too much so I decided to take next week off. All of our family is located all over the country, and we are young and do not have children, and he had also isolated himself the past few months so there is a lack of social support which has not helped me with feeling a heavy burden. The what ifs are frightening, the medical team/social worker/hospital in general has been lacking communication and when I do get information it seems conflicting or like I’m not getting a straight answer much of the time. And he is at the “top transplant center in the country” according to their outcomes, but still grateful for everything they have done so far to care for my husband. Also, how do you find the time? It’s like I just got a new full time job dealing with all the paperwork/medical decisions/coordinating caregiver plans/trying to keep what’s left of his life together while still maintaining a semblance of my own life. And I’m angry because I was lied to by him and this was completely preventable (Tylenol, supplements, and alcohol all contributed to end stage liver disease/liver failure). I don’t know how to do this, or if I am even capable! We just married 2.5 years ago and this was the prime our lives. Now it’s permanently damaged/changed. Thanks for reading, any feedback is appreciated and I’ll continue to read here to keep learning.

I'm glad you found this group, too. I'm more than twice your age, so I apologize if my advice seems out of touch. But, I've lived, loved, lost, and been lied to, too. I know it does get better, eventually. You'll learn here that you are NOT alone. It's natural to feel overwhelmed when diving into such unknown territory. It's hard, it's frightening, it's unfair. I salute you for everything you're doing for your husband. You'll find yourself stronger when you come out on the other side of this. Keep hope alive. Try to know you're working toward happier days ahead. Meanwhile, please keep reading and posting when you have a chance. Being a part of this community will help.