How has your recovery from your organ transplant been?

Hi, @peter55 and Welcome to Mayo Clinic Connect! Congratulations on your 'almost' one year liver transplant!!
Do you know that this is a perfect time for you to post this exciting topic? We are in the midst of the Holiday Celebrations and preparing to begin a New Year - and - It is a wonderful time for each of us (recipients, loved ones, donors, donor families...) to reflect on our 1st year transplant experiences.

Peter, my transplant surgery was 15 years ago. I will be happy to share later, but how about you and/or some newer recipients getting us started. Here are some ideas - What organ did you receive? Where did you receive it? What are some memorable experiences or a favorite experience that you wouid like to share? What are you able to do now, that you couldn't do prior to the transplant? What do you wish you would have known before your transplant that might be helpful to someone who is beginning their own transplant journey?
Who wants to0 go first?

Hi Peter, I am coming up four years since getting a lung transplant and it is a challenge at the beginning. I had to use a wheelchair and walking frame for the first 8 months. I found it was important to keep pushing yourself as hard as that is. I am still not back to what I was before being diagnosed with Interstitial Lung Disease, but I am independent and able to do most things. You have to advocate for yourself when dealing with the transplant specialists and push them to help with any issues that arise.
Since the transplant I have been able to travel to the Philippines, Thailand, Japan internationally with my family. I have travelled to Queensland, Sydney and Canberra in my home country. I have had the opportunity to watch my younger kids go through Primary School into High School. I have had to accept that there are limitations to what I am capable of and deal with the dangers associated with immunosuppressants and for example gardening which can cause aspergillus infections that may be fatal in my case (I just wear a N95 mask when gardening).
It is a hard slug, but it is worth it in the long run. Be vigilant and strong and keep active. I really hope you recover quickly and are able to find happiness, every day is a bonus.

Hi Peter,
I had a Left Lung Transplant on April 7, 2024, so my 1 year anniversary is approaching. My experience has been amazing, my wife and I have truly been blessed! The support, and expertise of the Team at Mayo has been a life saving game changer. I feel, and am told I look 10 years younger!! No more oxygen to drag around, and deal with refilling or carrying enough on trips. What could have been a terrifying experience has been the opposite!
Glad you are having a great experience as well, and that it continues!!!

Hi I had a liver transplant 2/5/24 so I am approaching my one year anniversary- what an amazing journey it has been! I have been given back my life and I am so grateful and will never take my health or life for granted again! I am living life to the fullest and my new moto is only happiness and joy are allowed to be in my life! No negativity is allowed ! I am thankful to my angel donor and their family that in the depth of their grief they saw it in their hearts to save others !

My dbl lung transplant was 1.5 years ago. Surgery itself was a train wreck followed by 5.5 months hospitalization. Partial paralysis, severe neuropathy, gastric issues, blurry vision, weakness, continued oxygen supplementation, diminished hearing, loss of balance and incontinence are still with me to this day. Along with illness requiring rehospitalization 3 months later from CMV positive donor followed by a bout with covid are my life now.
Not a very good outcome for me, but I am one of the few exceptions. Many days it gets me down but then I rally to continue the fight towards being able to walk again, gain full use of my limbs, getting off oxygen supplementation and full body shaking to stop.
I will not give in.

Sorry to hear about your difficulties after transplant. Glad to hear giving in is not an option. Hang in there, praying everything gets better for you.

Hi, @kathy22.
I am so sorry to hear of the complications you have suffered and are still dealing with post transplant. I can definitely understand your occasional bouts of frustration, but I am so impressed by your positive attitude and your refusal to give up. You are a super inspiration to me and to others here on Connect who are dealing with challenging health issues. I wish you all the best. Stay encouraged and NEVER give up! We're all rooting for you. 💕

Thank you so much. It is diffucult many days to be sure. But I am so very grateful to my donor, my donor's family, my transplant team, my caregivers and all who are helping me move forward. I've still got a lot of living to do and I intend to do it.

"The Creator gives the hardest battles to the strongest warriors."
This is a quote I have recently become reacquainted with. And it surely feels right!

Keep on your journey, please!
Ginger

@peter55 congratulations on nearly a year post-transplant! My liver transplant was 3 years ago and I’m doing well. I had acute non alcohol liver disease that is thought to be autoimmune. My transplant happened within the same year of diagnosis as I was suddenly very sick.

I have found year 3 to be positive as the more time that passes when you feel well the better. I began returning to work (I am in my 50s and am a clinical social worker) about a year post transplant, gradually. The problem with year 3 for me is I feel that the medicines I must take are taking their toll- mostly related to blood sugar, some weight gain, and persistent back pain which stems from a fall I had when I was very sick.

In all I found year 3 to be less invigorating and filled with the relief of being well again and finding my energy again. All is still well but I feel like I’ve been in a bit of a slog. I’m hopeful that the coming year will feel less sloggy! I am grateful to be alive and well and plan to try some new things this year to support my wellness.

I have noted that the trauma of being sick, hospitalized a lot, feeling scared and out of control is fading. When I was sick I thought I’d never return to stupid worries like not having enough time to do x y and z, worrying over small interactions…but my small worries have returned and this is actually a beautiful thing!