Firstly, thank you to those who have made contact with me, I can see that you are a close network of friends really helping and supporting each other from your blogs and I really feel like I want to be part of it! I've really enjoyed hearing from some of you and hope the list will keep growing! Unfortunately I can only do so much on the computer in the day and it's not enough for me at the moment to start my blog, read up on others and message people- I'm sure I'll get quicker tho!
So many of you have CF, rather than a condition similar to mine. It's been quite a shock for me to realise that I seem to not be doing as much as most of you are / were before your transplants. I don't live with the same problems and endless medication you do and I don't have the strict physio routines etc but I do seem much more less mobile. I don't cough, and I don't even need oxygen hardly ever, my heart is strong which keeps up my SATS but I just can't breathe the minute I move. I can't really leave the house at the moment- just getting in and out the car is mission impossible, I can't eat, bath or talk easily, I can just about walk between rooms after a nebulise or inhaler!
What I'm wondering is how much of this is in my head and I'm stopping myself because I'm scared of being breathless or is it really physically impossible? I discussed this with Phil who has pointed out that different lung conditions are very different to live with but I'm concerned I'm not perhaps pushing myself enough. Or is it dangerous to push that barrier?? The doctors don't say much about it cos I don't think they know.
The other trouble is my body is working so hard to breathe and I'm constantly fighting to keep my weight but I get so exhausted by the end of the day that then I cope less well with the breathlessness.
The other main thing that makes me feel like I could do better is I won't be left at home on my own- even for 10 minutes- has anyone been like this? You all seem very self-sufficient and confident- how do you do it?? Luckily I have really supportive family and friends who have not left me on my own at all but I would really like to address this.
When I first became properly ill last year I started having bad panic attacks when I felt scared and these were making things alot more difficult. I have worked really hard to put on a few vital kgs since then which has made me feel less weak and I was coping a lot better. However, the last month or so (really since my transplant assessment) I have become a lot more scared again. I haven't had any panic attacks but I feel quite close to them sometimes. I have spoken to the transplant co-ordinator about this and they seem to think the best thing I can do is talk to people who have been through this and it will probably get easier!
I find it so frustrating cos I have always been a strong, determined person but I just can't seem to rise above the fear this time.
I'm sure it's all just anticipation of what is to come- I'm more scared of how long it will take (if I'm lucky enough to ever) get the call and I find it hard that when I look at my diary and people discuss arrangements- I'm constantly thinking- will i be here then or in hospital or even worse still be waiting?! Will I feel better or worse? No one can answer these questions but does that get easier with time?
My final fear for this post is about flying. Since my decline last year I become extremely claustrophobic and always have been quite scared of flying- how am I going to get through the flight to Harefield when the call comes? I have already been warned it's not a nice air ambulance plane to be in and will take over an hour plus I'm sure I will be panicking! Finally I have to choose between Mum and my husband to come over with me- the other will have to wait for a normal flight to the UK- I couldn't possibly choose!!
Anyway, these are my concerns about my current condition! Next time- I will detail some questions about tranplants that I have- you lucky people!! It really feels good to get some of this out and if anyone has any suggestions or ways they cope- I would be very interested! xx