Working after transplant

[David Ota]

@jillgerber4gmail-com

Hi Jill

I had a double lung transplant May 31, 2016 after 5 years with IPF.  I work as an IT professional, I was traveling quite a bit before IPF 10-20 trips a year.  I was is decent ‘IPF’ health in May of 2016.  I worked right up to the day I got the call from the hospital.  After the transplant, I was out for 5 months healing and getting my strength back.  I went back to work full time in Oct 2016.  Because I’m an old IT professional, I sit on my behind most of my day.  I have been working from home for almost 10 years now.  My employer allowed me quite a bit of leeway on work-from-home.  I’m almost 5 years with the transplant now.  I was diagnosed with chronic rejection last year, just before COVID showed up.  I am more tired now. As a work-from-home professional I have been able to work without many issues.  If I had a more physical or less understanding employer, working would be harder for me.  Some of the issues over the years:

1. Travel during the cold and flu season (now Covid)

2. Stomach issues, stomach ache, diarrhea.  My drug regimen has been pretty stable, but periodically I can get very bad stomach aches and diarrhea.

3. Nebulizer treatments.  At the start, after the transplant I was doing a home nebulizer treatment 3 times a day for 45 minutes.  That would be pretty disruptive for work.  Those stopped in my 1st 12 weeks after transplant.

4. Memory loss.  I have a pretty hard time remembering things these days.

5. FATIGUE – I have nowhere near the stamina I had when I was 50.  (Who does? HA HA) I have watched my stamina increase after the transplant, and decrease after the chronic rejection.  I can still work from home, but there are days I am very tired.

6. Lack of sleep, this may be just me, but my sleep is very broken up.  Worse as it’s ever been. It probably plays into my fatigue and memory issues.

I am not sure I could have worked full time as a tradesman or construction after the transplant.  Just doing simple maintenance around the house shows me weekly that I could not do those as a profession.  Some of my transplant friends have had many more issues than me.  White blood cell counts at 0, in and out of the ER 6-7 times a year.

I have gotten to be pretty good friends with 7 other transplantees.  Their recovery were all unique, I believe only me and another engineer went back to work.  3 have passed,   1 retired after the transplant, and 3 were retired by IPF.

I hope this helps.

Dave

[Bob]

Dave

Thanks for your very informative response to the question. I am 5 years in with IPF and awaiting a decision of whether i qualify for a transplant. Had to give up my p/t job last year due to a deterioration in my oxygen levels. Would love to be able to go back to work if transplanted as this virus deal is driving me nuts. Concern now is the increased demand for new lungs due to the damage caused to some poor folks because of covid.

[Jill]

Dave, thank you so very much for the detailed and informative answer. It’s super useful and much appreciated. It emphasized for me that transplant really does change one set of problems for another, hopefully better set of challenges. It was sobering to read your response, and I find it so interesting the range of responses I’ve gotten from the FBook forums when I posted this same question. Overwhelmingly people are thrilled to have new lung(s) and be able to breathe again, and as you wrote, there are still many daily challenges. It’s very encouraging that you had five years before chronic rejection set in, and my prayers go out for you that your health does not deteriorate more and you’re able to keep your lungs! My husband does work a desk job, and can continue doing that from home until he retires, which hopefully won’t be for a few more years.    Well, we’ll see what happens. He is probably not nearly bad enough for a transplant, but on his pulmonologists advice, we’ve begun the process of getting listed, since it can often take so long just for all the evaluations. Thank you very much and I hope you’re fatigue and sleep and memory improve!

[Don Graybill]

Hi Fellow IPFers —

I really appreciate the posts you folks have provided.  It sounds though the you are younger than I am and are possibly in better circumstances than I am.  I’m 75 and have had IPF since 2011.  I’m now retired with no intentions of returning to work.  While uncertain, my doctor suspects my PF has been influenced by Rheumatoid Arthritis.  Last year my pulmonologist suggested I check out the possibility of getting a transplant.  I did that at John Hopkins and was told 1) I’m too old and 2) my IPF had not progressed enough.  I think my RA was also a factor against me.   So I dropped the idea.  My pulmonologist has recently again suggested the possibility of a transplant — this time at Philadelphia (I live in south eastern PA).

Quality of life means a lot to me — frankly more so than longevity.  My question is this to those of you who have experienced a lung transplant:  Was it a worthwhile experience for you? Would you do it again?  Personally if I must spend a year or so fairly immobilized in recovery and then struggle with all the issues of transplant rejection, I’d inclined not to pursue that course of action.  I would value your input.  Thanks!

[David Ota]

Hi Don

As I said in my last post, I’ve known and followed 7 other transplantees in some detail.  The recovery from the surgery can vary wildly between individuals.  There was a similar question in one of Charlene’s Posts.  I remember saying the decision to move forward with a transplant, for me, came down to one simple question, “Am I ready to leave this world?” My answer was, “No”.  Getting a chronic rejection diagnosis last year is forcing me to review that question again.  I already know my answer, my wife and I will roll the dice again.  In the last 5 years I have watched my son and daughter graduate college and become adults.  I wake up with the most beautiful woman in the world every morning.  I do not know what the next 5 years have in store for me, no promises, no guarantees, but my life is so good I have to try.

Getting down from my soapbox for a minute, if the transplant Docs had said, “Dave, we’re gonna tear your lungs out, give you the gnarliest scar we can, inflict the strangest side effects, stomach aches, and skin cancer on you” I may have hesitated, but they didn’t because they don’t know.  My uneducated observation of recovery is, the healthier you go into the surgery, the better you recovery after.   The fewer “comorbidities” you go in with, the easier the recovery.  The younger the patient, the better the recovery.  The better the attitude, the better the rehab.

I was diagnosed with IPF in 2011, you remember, there was no treatment, no Ofev or Pirfenidone.  I was able to join one of the drug studies in 2012.  I did not know if I would get the real drug or a placebo, but it allowed me to do SOMETHING to claw back some control of my life.

Quality of Life is important to me also.  Given a chance, I will go for another transplant, knowing how hard my 1st one was, and watching people die during their 1st year of recovery.

Man, some of my posts are really dark these days 🙁

 

[eileen d koster]

Dear Don, I had a right lung transplant on Mar 25, 2021. Before I was diagnosed with IPF in 2016 and went on supplemental O2  (3>4 with exercise) in June 2020. In late Sept 2020 I started the test to get on the transplant donor list.

I live in Los Angeles and receive my care at Cedars Sinai. I am 75 in in good health and weight erxcept for IPF. I went on there active transplant list in Feb 2021 and got the call on Mar 24 2021 for the right lung transplant. They would not do a double because of my age. Let me tell you it has been a miracle. I was uncomfortable for 2 weeks in ICU and my hospital room but my pain was never above 4. I had a very positive mind set. I had a caregiver who I’ve known for many years. Today as I write this I am driving and living independently in a 2 story home. I continue to thrive and take many many meds that will keep me going.

Best of luck on your journey and feel free to reach out to me and others.

Eileen Koster

 

 

[Christie Patient]

@panamer69 Eileen thank you for sharing your success story, and congratulations on your new lung! I’m happy for you that your recovery was easy and you are living independently already only a month later. That is really phenomenal! I hope you stick around the forums as you continue to thrive post-transplant. Stories like yours can bring people hope 🙂 Cheers!

[Don Graybill]

Thanks David.  I appreciate your thoughts and insight.  Don

[Christie Patient]

@davidota I think that’s a really fair assessment of the whole situation. And having been through it once, deciding that you’d try it again if needed speaks volumes. I know not everyone feels that way, though. I know my mom is happy with her decision, but I am honestly not sure if she would do it again. We haven’t breached the subject, as there is no need at this point.

I do also agree that going in healthier, younger, and with a better attitude is the way toward the best outcomes. Having a skilled team is also a factor if you have comorbidities and age or other issues working against you.

[Don Graybill]

Thanks Eileen, you have been most helpful.  Keep going!  Don