What was your experience returning to work post liver transplant?

Posted by katebw @katebw, Jun 2 6:59am

I’m wondering what people’s experiences are around returning to work (if you worked before your transplant). I haven’t worked (social work) since March 2021 and tentatively plan to in the fall. Very part time. I get terrible back aches, worried about stamina, etc. I’d love to know how you address this, if this is relevant to you.

Interested in more discussions like this? Go to the Transplants group.

Hi, @katebw. Welcome to Connect. Congratulations on your desire to get back to your normal employment. Am I correct to assume that you have already had your transplant? I had my liver and kidney transplant 13 years ago at age 60. I had already decided to retire (early) and so I did not have to make the decision that you are considering. I clearly remember being told by my transplant team, "You had this surgery so that you could live a normal life." It sounds to me like you are ready to resume your normal life. Good for you!
I know of people who jumped right back to their jobs, and others who did not/could not for a variety of reasons. I used to teach (middle and elementary) and after my transplant I was fearful of being in a classroom of children due to my immunosuppression and exposure to infections. Another woman in my community did go back to classroom, and continued teaching for many years until retirement.
Kate, how long ago did you get your transplant? What organ? And How are you feeling? Have you asked your transplant team whether you are ready?

REPLY

Thank you for your reply, @rosemarya. I was diagnosed with liver disease related to my ulcerative colitis, in March 2021. It felt sudden, but looking back I felt "off" for 1.5 years beforehand though my blood work was ok. I had my liver transplant in late October, 2021, so it's been about 7 months. I was very sick and MELD was high (32) so I was prioritized once on the wait list. 2021 lasted forever but looking back it was short and intense. Currently I feel VERY well, no huge complications except one recent hospitalization for dehydration related to the stomach flu. My primary issues are around getting re-conditioned and also, coping with horrible back aches which I had pre-transplant (I had a big fall a year ago due to the second of four episodes of hepatic encephalopathy) and are about 10x worse now.

I have a very loving family and family of friends which has gotten me through this. While I was widowed at 41 and I miss my husband even more with all of this, I have a lovely partner who has helped me so much and we've grown closer. So I am a lucky unlucky person.

I'm a social worker. I had to leave my full time job of 10 years due to the duration of my illness. I am planning to try some kind of work, part time in the fall at a community clinic, I am still nervous because of my back and weakness, and also being interrupted by some complication. I have to apply for a new job. Another concern is health insurance and my disability benefits –I'm afraid of having health insurance that won't cover everything, and I'm afraid that I'll never be able to work full time again. I'm 54 and it feels too soon to say, oh well. Financially or emotionally.

I think it was you, @rosemarya , who is from KY. I'm from Louisville, KY though I haven't lived there for many years. Kate

REPLY
@katebw

Thank you for your reply, @rosemarya. I was diagnosed with liver disease related to my ulcerative colitis, in March 2021. It felt sudden, but looking back I felt "off" for 1.5 years beforehand though my blood work was ok. I had my liver transplant in late October, 2021, so it's been about 7 months. I was very sick and MELD was high (32) so I was prioritized once on the wait list. 2021 lasted forever but looking back it was short and intense. Currently I feel VERY well, no huge complications except one recent hospitalization for dehydration related to the stomach flu. My primary issues are around getting re-conditioned and also, coping with horrible back aches which I had pre-transplant (I had a big fall a year ago due to the second of four episodes of hepatic encephalopathy) and are about 10x worse now.

I have a very loving family and family of friends which has gotten me through this. While I was widowed at 41 and I miss my husband even more with all of this, I have a lovely partner who has helped me so much and we've grown closer. So I am a lucky unlucky person.

I'm a social worker. I had to leave my full time job of 10 years due to the duration of my illness. I am planning to try some kind of work, part time in the fall at a community clinic, I am still nervous because of my back and weakness, and also being interrupted by some complication. I have to apply for a new job. Another concern is health insurance and my disability benefits –I'm afraid of having health insurance that won't cover everything, and I'm afraid that I'll never be able to work full time again. I'm 54 and it feels too soon to say, oh well. Financially or emotionally.

I think it was you, @rosemarya , who is from KY. I'm from Louisville, KY though I haven't lived there for many years. Kate

Jump to this post

Hi Kate…I am Jackie..liver transplant October 2020. I wanted to wk due to boardum
I started to wk in a school part time. But I have to tell u I was tired at end of day..feet hurt..back hurt .. stamina was ok when I was there. I have since quit..I got COVID from the kids! My Dr writing letter I can't wk with kids anymore due to my
Health..all u can do is try….good luck

REPLY
@jackie421blfdgurl

Hi Kate…I am Jackie..liver transplant October 2020. I wanted to wk due to boardum
I started to wk in a school part time. But I have to tell u I was tired at end of day..feet hurt..back hurt .. stamina was ok when I was there. I have since quit..I got COVID from the kids! My Dr writing letter I can't wk with kids anymore due to my
Health..all u can do is try….good luck

Jump to this post

Ps . .I was home for one in half years before I did this

REPLY

Thank you @jackie421blfdgurl for this. Gives me some perspective. How do you spend your time these days?

REPLY
@katebw

Thank you for your reply, @rosemarya. I was diagnosed with liver disease related to my ulcerative colitis, in March 2021. It felt sudden, but looking back I felt "off" for 1.5 years beforehand though my blood work was ok. I had my liver transplant in late October, 2021, so it's been about 7 months. I was very sick and MELD was high (32) so I was prioritized once on the wait list. 2021 lasted forever but looking back it was short and intense. Currently I feel VERY well, no huge complications except one recent hospitalization for dehydration related to the stomach flu. My primary issues are around getting re-conditioned and also, coping with horrible back aches which I had pre-transplant (I had a big fall a year ago due to the second of four episodes of hepatic encephalopathy) and are about 10x worse now.

I have a very loving family and family of friends which has gotten me through this. While I was widowed at 41 and I miss my husband even more with all of this, I have a lovely partner who has helped me so much and we've grown closer. So I am a lucky unlucky person.

I'm a social worker. I had to leave my full time job of 10 years due to the duration of my illness. I am planning to try some kind of work, part time in the fall at a community clinic, I am still nervous because of my back and weakness, and also being interrupted by some complication. I have to apply for a new job. Another concern is health insurance and my disability benefits –I'm afraid of having health insurance that won't cover everything, and I'm afraid that I'll never be able to work full time again. I'm 54 and it feels too soon to say, oh well. Financially or emotionally.

I think it was you, @rosemarya , who is from KY. I'm from Louisville, KY though I haven't lived there for many years. Kate

Jump to this post

Hi Kate, Yes I am happy n Kentucky and was flown to Mayo from Univ of Ky when I had complications with advancing Primary Sclerosing Cholangitis (PSC). I live SW of Lexington. Right now I’m sitting in a shady spot and enjoying the beautiful day at the Brass Band festival in Danville. 🎵

REPLY

Hi Kate…my name is Jackie too! Congratulations on your transplant! I had my liver transplant Jan 2020. I went into acute liver failure due to acetaminophen use. I was 56 at time of transplant, and had been a flight attendant for 32 years, and like you, was not ready to retire emotionally or mentally. I worked my way up to walking everyday for about an hour to get my stamina up and returned to work 6 months after transplant with no regrets. I do have days when my body feels it more than others. I'm fortunate to be able to work as much or little as I want. Covid has been interesting. I've been vaxxed and boosted 4x and will continue to mask, wash my hands frequently, and do all I can to keep myself healthy. I did test positive for Covid April 2022, I'm grateful to have recovered quickly. I felt if I didn't give myself the chance to finish my career on my terms I would regret it. I'm happy with the decision I made get myself back into the work force.
Each transplant journey is so personal and unique!
Sending warm wishes to you Kate!
Best, Jackie

REPLY
@katebw

Thank you @jackie421blfdgurl for this. Gives me some perspective. How do you spend your time these days?

Jump to this post

Hello ….oh…shoplifting..
Keeps it interesting…
No really…just quit my job. I take care of my little doggie baby…joining the y for swim exercises.and some machine wk…I would like to take the summer off but I will see how it goes….by the time u. Get done with your chores ..cook errands..walk the dog..the day is almost gone…but I am searching for something meaningful to do..summer is here my friend and I like to take day trips to the beach…get some of that summer color!!!

REPLY

Hi Kate, I'm 15+ years post liver transplant, which was done as an emergency because of a med I was on. I was going to retire after the transplant, however found I had better work due to finances and insurance. 7 months after my transplant, at age 58 I went to work in a new town doing a new job. I was weak at the time, but I think the job helped me to ragain a normal (well almost normal) life. I worked 40 hrs a week, learning new procedures and found so much support at my new job, it was well worthwhile. At 73 years old I'm still working for the same company, I've been promoted several times and I'm grateful for my gift of life, and my job each and every day! Yes I have some bad days, but the good days make up for the bad. Best of luck to you, but think about the positives (and there are so many), as they helped me feel more like a normal person.

REPLY
@dakotabonnie

Hi Kate, I'm 15+ years post liver transplant, which was done as an emergency because of a med I was on. I was going to retire after the transplant, however found I had better work due to finances and insurance. 7 months after my transplant, at age 58 I went to work in a new town doing a new job. I was weak at the time, but I think the job helped me to ragain a normal (well almost normal) life. I worked 40 hrs a week, learning new procedures and found so much support at my new job, it was well worthwhile. At 73 years old I'm still working for the same company, I've been promoted several times and I'm grateful for my gift of life, and my job each and every day! Yes I have some bad days, but the good days make up for the bad. Best of luck to you, but think about the positives (and there are so many), as they helped me feel more like a normal person.

Jump to this post

@dakotabonnie welcome. Wow, what a story. Fifteen years post transplant and still working at 73 years old for the same company. That's not something one hears everyday. I think you should add your snapshot of hope to this discussion:
– Snapshots of hope: Life on the other side of transplant. https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

All welcome to add their snapshot by the way.

Bonnie, might I ask what kind of work you do? Any retirement plans?

REPLY
@colleenyoung

@dakotabonnie welcome. Wow, what a story. Fifteen years post transplant and still working at 73 years old for the same company. That's not something one hears everyday. I think you should add your snapshot of hope to this discussion:
– Snapshots of hope: Life on the other side of transplant. https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

All welcome to add their snapshot by the way.

Bonnie, might I ask what kind of work you do? Any retirement plans?

Jump to this post

Hi Coleen! I definitely will consider your recommendation! I work for a wonderful company (admin type work) that provides jobs for experienced workers over the age of 55 years. You can check it out on our website at NEWsolutions.org. We are a non-profit and the jobs we have are via funding through the government. Prior to my transplant I raised Bison and we had a manufacturing company, and I had just moved from SD to WI when I got sick. It took from the day after Christmas to Jan. 28th for my liver to fail completely, so I will be forever grateful to Mayo and my donor for saving my life. I call Mayo the Dome of Miracles!! I went back to work 7 months after my transplant, and don't know what I would have done without it! 🙂

REPLY
Please sign in or register to post a reply.
  Request Appointment