How do you get along while waiting?

[MeasureInLove]

I've been on the transplant list for just over three months. I've been out of work for almost a year and a half and during that time working through depression, anxiety and trying to just stay positive.

The hardest thing has been that I feel somewhat like a different person. I used to always be the person with a long list of things I wanted to do (professionally and personally) and places I wanted to go. I was always looking forward.

Lately it's changed. I absolutely hate not being able to work. I loved my job and I was good at it. I miss the work and the people. Being challenged every day. My friends and family are trying to get me to plan out things I want to do post transplant, and I find myself at a loss. I feel like I've lost that hopeful, optimistic person I was who saw a future full of accomplishments.

How do you keep yourself sane while waiting? I know that it's a full time job just keeping myself as healthy as I can while I wait. But I still feel like I'm not contributing to society. All I can think of post transplant is the hard work in recovering and I worry about maintaining that health. For those of you post transplant, did you find it hard to transition back to a "normal" life?

I'd love to hear from those of you going through the same thing.

 

[markinohio]

I haven't worked in over three years becuase of my lungs. I'm not sick enough to get listed yet, but I'm not healthy enough to do much of anything physically. I am a husband and a parent of two boys. I spend my time being the best husband and dad I can be. I'm OK not working because I was getting sick so much trying to mantain a full schedule. Now I can do more treatments and take better care of myself. It's different for everyone. I don't think I get get depressed, but I do get frustrated because I can't easily do the things I used to do. Good luck.
Mark

 

[azdesertrat]

Being 'Put out to Pasture' early SUCKS!!! I deal with it daily.
The worst part is; I thought I'd be able to return to work post-trans. Well, the anti-refection drugs caused me to become diabetic.
You can't drive a Big Truck & be insulin dependant diabetic.

Yes, I deal with depression because of this problem. I feel utterly worthless around 85% of the time.
My wife tries to put it into perspective thusly: I know I'm not going to live a real long time post-retirement. She says I need to have as much fun as I can between now & the bloody end. I try to.
It really sucks that she still has to work. I could have a helluva lot more fun if she was retired with me.
As it is, I love to travel. (Wonder Why?) So I spend time in ID with my family. I spend time in the San Diego area with my brothers.
If I decide I need to go somewhere I can usually pack up & split when I'm ready.
One trip I absolutely WILL take before I die is to The Wall in Wash. DC. I need to go to the Vietnam War Memorial and I will.
I sold my Harley & bought an ATV. As long as my power steering works on my ATV I can spend alot of time in The Boonies and I do.
I have a friend in a simialr situation; he got hurt & was medically retired early. We do the best we can keeping each other's spirits up while we explore the back country of the American Southwest.
I guess it is what you make of it.
Best of luck to you. If there is any way I can help please; reach out to me. I'll be happy to do what I can.
Take care, 'Pat'.

 

[JustaCFmom]

Maybe try contacting Jerry Cahill. He is a real inspirations to thousands. he just had a transplant this past spring. https://www.facebook.com/jerry.cahill1A

 

[mwinston87]

I graduated from college in 2010 and less than 4 months later had to stop working because of my CF. I went through a feeling worthless phase when I first stopped working because I felt like I wasn't doing anything. Now I volunteer 2 days a week at a local elementary school with a teacher's reading groups so that I am still utilizing my English degree I worked so hard to get but am still free to take the days off if I am not feeling well. Being able to help the students and just be out doing something other than breathing treatments has been a life saver! I am going in November to start the evaluation process at Duke so I'm looking to find a school down in the Duke area or some other volunteer spot to pass my time (if I have any after their daily rehab requirement).

 

[Daverog75]

I have not been able work for 4 years and I am on the list. I can't wait to get this over with and move on with my life. Getting back to work, working out, and playing golf. I have a twin brother who had a transplant 4 years ago and about 4.5 months he was ready to start going back to work part time and then back to full time a couple of weeks after that. If everthing goes well with your recovery you can get back to work pretty quickly.

Dave, 37 w/cf

 

[Robert-Gibson]

Maybe try getting in touch with Jim Cohan. He is a transplant expert. he give you right suggestion to you. If you want to know more about Jim so go on this site: transplantcoordinator.com

 

[ContinuallyRefined]

I can relate to a lot of what you expressed. Feeling like a different person and pinning it to not contributing to society. I have two children so staying busy is not a problem but I miss contributing outside my family. As another poster did, I started volunteering recently and I really look forward to those days of the week. I also started going to the gym which is a good excuse to get out of the house. It's been two months since you posted, how's it going?

 

[Ariesguy]

MeasureinLove I had my transplant in April, 2002. It took a year to get back to work, but transition was not bad. Once you have the transplant, you will feel better, life will be easier. Doing your job will be easier. You won't have to contend with the CF manifestations. You will need to deal with the lung transplant routine, but trust me....it is a lot easier. At least for me it was.

 

[tarheel]

I've been on the transplant list for just over three months. I've been out of work for almost a year and a half and during that time working through depression, anxiety and trying to just stay positive.

The hardest thing has been that I feel somewhat like a different person. I used to always be the person with a long list of things I wanted to do (professionally and personally) and places I wanted to go. I was always looking forward.

Lately it's changed. I absolutely hate not being able to work. I loved my job and I was good at it. I miss the work and the people. Being challenged every day. My friends and family are trying to get me to plan out things I want to do post transplant, and I find myself at a loss. I feel like I've lost that hopeful, optimistic person I was who saw a future full of accomplishments.

How do you keep yourself sane while waiting? I know that it's a full time job just keeping myself as healthy as I can while I wait. But I still feel like I'm not contributing to society. All I can think of post transplant is the hard work in recovering and I worry about maintaining that health. For those of you post transplant, did you find it hard to transition back to a "normal" life?

I'd love to hear from those of you going through the same thing.

Well, I can't offer much advice, but I can say I feel like this was written by me under a different username.
The TX center I'm currently with (Duke) says "any time with your native lungs is good time"
I'd LOVE to see that doctor live a week, day, hour... any time with these lungs. I mean for Pete's sake when you can't use noise cancelling headphones because the sounds of your own snap-crackle-pop drown out the music...
anyways.
Personally, I'm looking to set something up for after transplant that I know I could never do now. I'd like to do a glassblowing apprenticeship, which would be a rather uh... explosive idea with O2. I've also gotten into quilting, and seeing projects come together and get finished is rewarding in a way that I really psychologically need. But I do still feel useless, mostly because I am. I mean, when you go from making money to being an utter black hole for your family's resources, it's not a great feeling.

So, doctors who say these lungs are doing great...
Take these lungs and breathe with 'em!