Clinic visits and figuring out details related to planning for future events always turns my mind towards transplants. I’m sorry if it depresses you, and I know I’ll be scared bowel-less in pre-op if that day ever comes (even though my doctor said “we’ve never lost anyone on the table”), but some people also need to be reminded that this as a reality of CF. Unless there is a cure before my bugs become resistant to every treatment available, it is inevitable sometime down the road.
What I have been thinking tonight, though is among the happier thoughts related to transplants. I’ve been down hard with the combination of recovering from a cold, my quarterly Boniva injection, and a triple flu shot on Friday. Until today at lunch, I’ve been blob-like, unmotivated, and going between hot and cold flashes faster than, well, moving on… I don’t think that much of my missed time from my client work will be directly related to my ability to do what I do. It takes very little physical effort to type and drag my finger around my trackpad. I do need to have a clear mind, though, and I have read that can be an issue with the meds and getting the right dosing and cocktail working.
Knowing myself, I think my biggest issue after an event like that will be motivation. I’m pretty sure I’d come back home and it would be similar to when I graduated from college: “now what?” My working so hard right now is very much motivated in planning for the future. When that future comes, what will I have on my horizon? I’ve had plenty to do this weekend, but I haven’t felt able to do anything until after lunch today.
Why? I have no idea why. I just know it’s been impossible to sit at my desk or on the couch with my laptop and do anything to the benefit of my clients or our checking account. Now that I had a good weekend of rest and got some work done today, I’m confident that I’ll be able to go out and kill it this week. We’ll just have to chalk this weekend up in the “getting rest so I don’t burn out or get sick” column.
Yes, I have a column called that for days like this weekend.
I’d be very interested to hear from those of you who’ve been through a txp or have also thought similar things as me. What kept you from working/do you imagine will keep you from working?
Hi FB,
I’ve been reading your blog for a while, but never commented or made contact. I started getting into CF and transplant blogs last year when I was in the process of being listed. I had my transplant in very dramatic circumstances in September last year.
Right up until a month before transplant I was working, not full time, but as much as I could manage. I’ve always been someone who has pushed through with CF and gotten through school, university and full time work (unless I chose to do part time, not for health reasons). And really I didn’t think much of it, except that it sucked using my holiday leave for tune-ups.
Now I’m a year post transplant, and I realise how hard that actually was, because now everything is so much easier. I went back to work 4 months post transplant (not full time, but that’s mostly due to trying to secure funding at my work), exercise is a pleasure… it’s just heaps easier to get through the day.
The main things that get in the way of working are ongoing doc appointments! I have also had a couple of sick days, but no more (and quite a few less) than some of my colleagues.
So for me, post transplant, working life is much more straightforward. I’m even looking forward to using my holidays for holidays!! Admittedly I’ve had a good run since being transplanted, the lungs are perfect and I’ve not had any infections.
I will just say that the first time I had ‘the talk’ with the transplant team I was terrified and couldn’t stop crying. I thought to myself ‘I will never be ok with this’ and really didn’t think I could get through. I felt guilty that somehow I hadn’t done enough to prevent this outcome, and so scared about everything surrounding transplant. However, by the time I signed the papers about 3 months later I was really at peace with my decision. I had talked to a lot of people about it, gotten to know the team, and also realised that my quality of life by that time was awful, and it wasn’t how I saw myself or wanted to be. I’m just saying this so you know that when and if that time comes for you, it’s ok to feel very negative – and things will get better.
And honestly, the way I feel now is fantastic. You get told you’ll feel better, but you can’t quite compute what that means until it happens – especially if you are someone who has been active your whole life despite CF and declining lung function.
Anyway, enough ranting (large post for a first ever post eh?)
Thanks for the great posts I’ve been reading over the last 18 months or so – keep up the good work!
Lou
@laqwalsh Wow, thank you, Lou. I never suspected I had a long-time reader who’d never commented. Thanks for such a great, detailed look at the status of your quality of life pre- and post-txp, as well as your emotions.
Stop by any time and I extend an offer for a guest post on the CF topic of your choosing if you like.