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Living Life after your Transplant
I would like to ask you to share ideas about how you 'live' after your transplant. For example: hand washing and germ prevention, eating out; attending public events; daily medicine reminder......Practical living; not the medical things. I would like to share an idea for hand shakes.
I am 7 years out from my transplant and I have had some time to implement some healthy practices that work for me. I have also been fortunate to have the support and directives from my post transplant team at Mayo Clinic as well as working as a volunteer with my local organ donor association.
Last week I met a woman, a liver recipient, at an organ donor event. When we were introduced, she reached out to shake my hand. She was 9 years post transplant. She was both surprised and pleased that I did not extend my right hand to shake hers. Instead, I used the American Sign Language hand sigh for 'Peace' . She had been struggling for a long time with this awkward situation.
PEACE: Place the right flat hand on the left flat hand at chest level; then place the left on the right. Now move both flat hands down and to the sides with palms down. Pass from one position to another smoothly and continuously.
I hope this helps you as it helped her. Rosemary
++++NOTE++++
Did you know that the words shared by members in this discussion have helped many?
What started out as a discussion in the Transplant Group was transformed into this blog post:
– Top Transplant Hacks: Patients Share Their Best Tips and Tricks https://connect.mayoclinic.org/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/
A conversation of thousands of words was organized into a concise, very practical list of tips. Tips by recipients for recipients (and their supporters).
But member wisdom didn't stop there. Look at the video the writers and producers of the Mayo Clinic app made to get your tips in front of many more.
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@markslivertransplant, Congratulations on your liver transplant! Your 4 month review is your first big step in recovery!
Is this your first time to see the transplant team since your surgery?
Hey Mark @markslivertransplant It's me again. I see that your surgeon was Dr Perry. I actually met her when I was at Mayo Rochester for my own transplant. She was completing her Residency there and she rolled me from pre-op to my transplant surgery! By the time I returned for my 4 month check-up, she was already in Jacksonville.
Good morning
I just felt like posting today. I received my transplant during the height of COVID. I live in BC in Canada. COVID restrictions began in March 2020 here in Canada. And my provincial health authority cancelled all "elective" non emergency surgery and one of the first to go were transplants. So all spring and summer transplants were put on hold. In October that year a small window opened up and transplants were put back on the Go list. I received my call on Saturday October 10 2020, which by the way is my wedding anniversary. My husband and I went to Vancouver General Hospital on the Sunday (Thanksgiving Day here in Canada). And my surgery took place at roughly 12:30 that day. I don't really know what "normal" life is like after a transplant. I still isolate, and wear a mask everywhere I go. I'm very fortunate that I live in a province where people don't make judgments or harass people who wear masks. I call myself a COVID transplanter. I live my post transplant life a little differently than pre COVID transplants. I watch what I eat and drink. I exercise regularly and try to get out regularly. I do go to Costco occasionally masked up mind you. Every day I give thanks for my gift. Oh I have met my donor's family and another recipient. If you are given the opportunity please try to meet. It's amazing how healing it is for both of you. God has truly blessed me and continues to help me through this most interesting journey. Well sorry if I went on to far. I just felt the need to talk. Thank you 💞
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5 ReactionsMy dear Rosemary...always love what u have to say. Unfortunately I don't do that. I try to b careful in public . Don't want people in back of my close. I sanitize my hands when I get in my car and wash hands when I get home! I just wanted. To wish u a Merry Christmas and the best to u and family for 2024..can u believe that number!! I can't..😍🥰Jackie
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2 ReactionsHi footballmum, I am a Covid LTP to 10/20/20. I have been very fortunate to be in touch w/my donor family also. I to have tried to eat exercise regular to, it makes a big difference in your recovery u must keep moving. I try to be safe when I am around folks, never had Covid , did not get any of the vaccines “my choice” or any vaccines that they offer. I feel the meds we have to take have been enough for my body. I to have been blessed in this journey💕
I hope we all stay healthy and live life to the fullest.💚
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1 Reaction@rosemarya
My wife will be put on the list for a liver transplant mid summer 2024, as her caregiver, how long should I plan being off work after the transplant to care for her.
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2 Reactions@kim1965, My husband was already retired when I had my transplant, so let me share some time lines that I remember, maybe it will give you somethings to consider. I was discharged from inpatient services on Day 7 after my transplant surgery. Since we live in Kentucky, we stayed at the Gift of Life Transplant House until I was discharged from outpatient care on Day 21. Keep in mind that everybody can have a different length of in/out patient follow-up periods. Your wife will have frequent labs as outpatient and also will be scheduled for procedures to check on the new liver and detect any possible complications. After returning to your home, there are restrictions on lifting, as well as driving restrictions and continuing labs as the new medications are monitored, usually weekly, and next biweekly. So she will need someone to take her to and from labs and any appointments. If there is a family member or good friend to relieve you, that is a real possibility to consider so that you can return to work.
I don't think that I'm able to being much help because, I honestly don't remember. My transplant was in 2009. Will the transplant be at Mayo?
Here are some support discussions that will give you a hint of what you might expect. There is good information that patients have shared, even in the older discussions. Please ask your questions anywhere.
From Transplant blog Newsfeed:
- What to Expect as a Transplant Caregiver
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/
Transplant Support Group Discussions:
-Transplant Caregiver Advice: Got Tips to Share?
https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
- Post Transplant Surgery and Early Recovery: What's normal?
https://connect.mayoclinic.org/discussion/post-liver-transplant/
- Waiting for the Call: What needs to get done at home before you go?
https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/
- Packing question: What did you have ready for "the call"?
https://connect.mayoclinic.org/discussion/packing-question/
- Liver Transplant
https://connect.mayoclinic.org/discussion/liver-transplant-1/
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3 ReactionsI had a different transplant, so I can't say how long you will be out of work. However, most states have paid family sick leave. You need to go through your employer for this and it's best to have set up prior to the transplant.
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