It's just one of those days: Share your transplant recovery tips

Hi David,
I am a liver transplant recipient of 31 years this coming November. (Mayo Rochester) Because I had had chronic active hepatitis for 25 years before transplant, it took a number of years before I can say I was recovered. How you recover depends on many variables so be patient with yourself and try not to compare yourself with others. Congrats on your gift of life!

@glover, great discussion to gather experiences about recovery, transition to home and more. I expanded the title of your discussion and am tagging a few members who, in addition to @my44, will have more to add. Bringing in @rosemarya @gingerw @1942marilyn @2011panc @act @amynewheart @arqui02000 @athenalee @ashelbywilliams7 @azdan99 @betzymontero8 @cehunt57 @chickytina
@cmael @danab @dglass4040 @dshaver @footballmum @lsheerin @apachanga1 @8899 @marvajr @muddlycrew @grateful76 @jackiez @chuckg @jolinda @mdplastics @sec1205 @stephanierp @thegirls @sidney073 @scottij @jcwilliams ...

Repeating @glover's questions:
To help our caregivers and organ recipients (pre- and post-transplant),
- What experiences can you share about your recovery from returning home from the hospital and now?
- How did you transition from the initial recovery into the new normal?
- Do you have any pointers or suggestions to help our transplant family in the transition?

What can I share about my recovery from returning home from the hospital and now?
I had a pancreas only transplant, which entailed splitting me open "stem to stern", as the surgeon said. In other words, my scar began at the base of my breastbone and extended to the bottom of my belly. It was neither an easy surgery, nor an easy recovery for me.
Following surgery, we spent several weeks at the Transplant House before we were able to leave Rochester. We tried using the bus system, but I found the roughness of the ride painful and after one experience we used our own vehicle. Home is a minimum of a ten-hour drive, and I still felt pain at every bump and jostle on the road.
Once home I spent most of my life on the couch. Follow-up difficulties required multiple trips back to Rochester through the first two years. I was finally able to reduce trips to twice a year, just before I reached Stage 3 kidney disease and was referred to the Kidney Transplant Department.

How did I transition?
My father died in 2017, mother died in 2028, and I was able to fulfill their wishes for their funerals and internments. I am still guardian for my multiply handicapped son and an active mother for both of my children. I have taught myself to knit, not well, and streamlined many household duties to manageable tasks. I took each day as it came and did the best I could each day. I made sure essentials were done and left everything else go when I needed to. Most days I walk without assistance and for the others I have a cane, walker and wheelchair. I now contend with chronic fatigue, five limiting diets, continued monitoring of medications and lab work, orthostatic hypotension, intermittent incontinence, increased damage to my teeth, ongoing PT, autonomic neuropathy, Stage 3/4 kidney disease, and arthritis.

Neither I nor the physicians thought I would be able to improve/stabilize my kidneys, but here I am; still with my native kidneys, no edema, no dialysis, and few kidney meds. I never expected to be the way I am now, content to stay at home and putter at my own things, whatever I feel like for the day. My faith has carried me through and will sustain me to the end.

Pointers or Suggestions?
Take each day as it comes.
Do what you can and leave the rest.
Ask for help.
Accept help.
Focus on your recovery and health.
Rely on your faith. God will provide.

Thanks for being honest in your recovery and all it has entailed the past 2 plus years after your transplant. My spouse had a kidney transplant in VT late Nov 2018 due to polycystic kidney disease he inherited from his mom. The frequent concern from the transplant team was 'rejection' and nothing much discussed that some people have many side effects from taking lifetime antirejection medications that lower a person's lifestyle. My spouse has not had one good day yet to feel good and have energy. He felt better prior to the transplant which was almost 6 yrs ago. I am the healthy spouse doing more and more due to his inability to do many things he used to do without a thought even when his GFR was 13% before transplant. All his many nephrologists know this . He already had a rejection (resolved) , then low hemoglobin for 8 months of me giving shots/resolved, CMV virus, resolved, and a few other issues the first 14 months after transplant. Then COVID-19 arrived. We still to this day live like it is March 2020 due to COVID-19 and the high risk of what most likely will happen if he gets it. I also live this way. I realize everyone makes a choice of how much risk are they taking in life to avoid losing the organ or the person dying or taking on more problems after COVID-19 is better. My brother in law recently died of long COVID-19 issues at age 64. So I know a bit about how the monoclonal drugs don't work that 'had' worked due to variant changes. I could write a book but won't , but we have not taken a trip for fun in six years now due to high COVID-19 to our timeshare, and due to how my spouse feels lousy everyday like he is taking chemo drugs 'again' like he did age 30 for Hodgekins lymphoma. WE both battle for the first time in our long married lives depression. THe vaccines for COVID-19 for him has not given him immunity. Friends and family have long gone stopped supported us emotionally over our choice to live in a bubble. All I know is when people think that an organ transplant will make things better , for some it might work; but our experiences it has not done so--the quality of life is not there. WE live 16 hrs from family and have no children. Just us. Most challenging time of our lives is now.
I sincerely wish you and your family all the best in how to push forward in making a good life.

Thanks for being honest in your recovery and all it has entailed the past 2 plus years after your transplant. My spouse had a kidney transplant in VT late Nov 2018 due to polycystic kidney disease he inherited from his mom. The frequent concern from the transplant team was 'rejection' and nothing much discussed that some people have many side effects from taking lifetime antirejection medications that lower a person's lifestyle. My spouse has not had one good day yet to feel good and have energy. He felt better prior to the transplant which was almost 6 yrs ago. I am the healthy spouse doing more and more due to his inability to do many things he used to do without a thought even when his GFR was 13% before transplant. All his many nephrologists know this . He already had a rejection (resolved) , then low hemoglobin for 8 months of me giving shots/resolved, CMV virus, resolved, and a few other issues the first 14 months after transplant. Then COVID-19 arrived. We still to this day live like it is March 2020 due to COVID-19 and the high risk of what most likely will happen if he gets it. I also live this way. I realize everyone makes a choice of how much risk are they taking in life to avoid losing the organ or the person dying or taking on more problems after COVID-19 is better. My brother in law recently died of long COVID-19 issues at age 64. So I know a bit about how the monoclonal drugs don't work that 'had' worked due to variant changes. I could write a book but won't , but we have not taken a trip for fun in six years now due to high COVID-19 to our timeshare, and due to how my spouse feels lousy everyday like he is taking chemo drugs 'again' like he did age 30 for Hodgekins lymphoma. WE both battle for the first time in our long married lives depression. THe vaccines for COVID-19 for him has not given him immunity. Friends and family have long gone stopped supported us emotionally over our choice to live in a bubble. All I know is when people think that an organ transplant will make things better , for some it might work; but our experiences it has not done so--the quality of life is not there. WE live 16 hrs from family and have no children. Just us. Most challenging time of our lives is now.
I sincerely wish you and your family all the best in how to push forward in making a good life.

Thanks for being honest in your recovery and all it has entailed the past 2 plus years after your transplant. My spouse had a kidney transplant in VT late Nov 2018 due to polycystic kidney disease he inherited from his mom. The frequent concern from the transplant team was 'rejection' and nothing much discussed that some people have many side effects from taking lifetime antirejection medications that lower a person's lifestyle. My spouse has not had one good day yet to feel good and have energy. He felt better prior to the transplant which was almost 6 yrs ago. I am the healthy spouse doing more and more due to his inability to do many things he used to do without a thought even when his GFR was 13% before transplant. All his many nephrologists know this . He already had a rejection (resolved) , then low hemoglobin for 8 months of me giving shots/resolved, CMV virus, resolved, and a few other issues the first 14 months after transplant. Then COVID-19 arrived. We still to this day live like it is March 2020 due to COVID-19 and the high risk of what most likely will happen if he gets it. I also live this way. I realize everyone makes a choice of how much risk are they taking in life to avoid losing the organ or the person dying or taking on more problems after COVID-19 is better. My brother in law recently died of long COVID-19 issues at age 64. So I know a bit about how the monoclonal drugs don't work that 'had' worked due to variant changes. I could write a book but won't , but we have not taken a trip for fun in six years now due to high COVID-19 to our timeshare, and due to how my spouse feels lousy everyday like he is taking chemo drugs 'again' like he did age 30 for Hodgekins lymphoma. WE both battle for the first time in our long married lives depression. THe vaccines for COVID-19 for him has not given him immunity. Friends and family have long gone stopped supported us emotionally over our choice to live in a bubble. All I know is when people think that an organ transplant will make things better , for some it might work; but our experiences it has not done so--the quality of life is not there. WE live 16 hrs from family and have no children. Just us. Most challenging time of our lives is now.
I sincerely wish you and your family all the best in how to push forward in making a good life.

Hi David,
I am a liver transplant recipient of 31 years this coming November. (Mayo Rochester) Because I had had chronic active hepatitis for 25 years before transplant, it took a number of years before I can say I was recovered. How you recover depends on many variables so be patient with yourself and try not to compare yourself with others. Congrats on your gift of life!

I spent 6 months in the hospital on a bi-vad waiting for a heart. Then 2 weeks in the hoapital receiving ost transplant treatments. Being discharged was a surprise and brought great joy. The spent 2 weeks in a hotel close to the hospital. Physical activity was not easy for those 2 weeks and required an escourt (wife) when leaving the room. It was a great relief when I went home where I continued to increase my activity. I linmited my physical contact and wore a mask. Quickly mastered my drug regiment. I remained out of work for 2 years, collecting disability.

@dotygl Welcome to Mayo Clinic Connect. Each person has their own transplant story. While there are a lot of similarities, there are many nuances of recovery.

It's not unusual for friends and family to not know how to respond or interact with you now. It might be a very visible reminder of mortality for them, or perhaps they don't want to have the responsibility of thinking so closely about you and their own health. Who knows? That's why reaching out here, with like-minded people, can be so beneficial to each of us. As we share our experiences and teachings, we find ourselves in a group who understands us, and has "been there".
Ginger