Wednesday, June 30, 2010

A learning curve

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


  1. argh I just wrote a long reply and then it didnt work..!

    With the anxiety issues I think its normal when you have had sucj a shock like yours, its a big adjustment to make. I think you should see someone about them before they get worse, as with you not being very mobile this could happen. I'd try to get your specialist or GP to refer you to a therapist. I recently worked with a girl where I volunteer who had anxiety issues and she was seeing a counsellor and it has worked wonders! She has been too busy to see me!

    I think with the breatheless you might need to get your fitness up. If I have been on IV's for 2-3 weeks I find I feel very breathless even though my lung function is better, its because I have been sat around! Start with short walks or anything you can manage, perhaps your physio can arrange soemthing for you? To join a gym (you can get discount) and you can take a carer with you. I know Tori used to see her physio every week to keep her fitness up, I think it helps with transplant as it makes your muscles stronger.

    With regards to planning things. Just go for it! You still need to live your life whilst on the list and if you did get the call, you'd just cancel the plans!

    Hope that helps xx

  2. Yeah like Gemma said I had a weekly appointment with the CF Physio and we did some treadmill, bike, cross trainer and weights!! Nothing majorly rough but enough to keep my muscles active. I avoided using a wheelchair as much as possible because the more you sit around then the more your muscles start to degrade and when you finally get the transplant your going to have a lot of trouble. I'm finding it hard with pains in my leg and I used to walk as much as I could!! You say you don't use oxygen but maybe you would benefit using it during exercise, have they ever done a walking test with you to see how much you desaturate with exercision? That might be something helpful. I know it's hard but you really have to push yourself and try to do as much as you can, you'll think it's easy for me to say but sometimes you just have to push thorugh and keep going!!

    I can't help you with the panic attacks thing but listen to Gemma she knows her stuff!!

    As far as making plans are concerned then make them!! Don't put your life on hold because (I don't like saying this but its always possible) you might not get the transplant and who wants to have lived half a life? That's the way I thought of it, live life in the here and now. Be silly, go out with friends, have a drink and chair dance!! Please please don't sit around waiting for the call. I'm going to plainly put it now and I hope you don't take it the wrong way but get off your bum and get back to living. Get help for your anxiety and panic attacks and get that life on track as much as you can. That is said with all the love in the world!! xx

  3. Thanks girls, I appreciate your helpful advice and your honesty. I did need a bit of a kick up the backside- but it's not the same when someone healthy like your mum tells you!!

    Right- made a plan of action:

    I will go and see a therapist then, it has been offered to me but I thought I was coping- I was so desperate to deal with everything well on my own that I think I've probably just bottled it and made it worse. I'm speaking to the transplant co-ordinator again on Mon so will ask for their recommendations again then. It certainly can't hurt anyway!

    I have asked about seeing a physio at my last hospital appointment and not heard anything so no time like the present- I will call and chase today. I think you are right- this is really important. I will have to start so slow but guess that's the only way to build it up. Last year I had a peg feeding tube for 6 months which my body really didn't get on with- it made me quite ill. It's since then that I have become much less mobile and more breathless and that would make sense as I would have lost fitness then.

    Thank you- I feel a bit better already :-) xx