A new life

Sunday, July 08, 2012

Sorry for the long absence of blog posts,I've been a very busy girl (in a good way) and haven't had time to write despite a couple of attempts! Anyway I'm back for the time being and as uni permits, I will hopefully will be posting a bit more often.

Apologies also for the random order of this blog, I'm trying to fit everything in that I want to let you know so will go have to go back a bit before I can get to what's been happening lately.

So back to January; I had just been let out of hospital after my transplant and was still back to the hospital twice weekly. At first it was really reassuring to be back and forth so often if also very tiring.When you've suddenly been thrust into a whole new world of post transplant care its really disarming and you worry constantly that something is wrong. After a while though, although you are still paranoid that something will go wrong you want to feel like you're progressing by having the visits spaced out more. During those first few months I was admitted 3 times. The first was due to a virus known as CMV, which is basically a relative of the cold sore virus but in post transplant people whose immune system is suppressed it can be dangerous. The drugs they use to treat this virus also have the side effect of wiping your immune system even further and therefore my white cell count dropped pretty low too. Although my immune system needs to be suppressed it is a tightrope between suppressing it too much and yet enough to prevent rejection. Fortunately it was just a case of sticking to the regular hospital visits rather than an actual admission.

However as the weeks went on my lung function was not rising as quickly as everybody would have liked. Most weeks it stayed the same and although I was happy it was stable my team were concerned that the numbers should be improving. On two occassions when this happened I was taken in for bronchoscopys (a small camera inserted into the lungs to see if there are any problems and through which biopsy's can be performed). Obviously rejection is always a worry particularly in the first year post transplant so it was better to be safe than sorry. Both tests came back completely fine, with the lungs looking healthy which I was obviously relieved about but I couldn't help feeling like I wasn't getting anywhere and that I was somehow letting my donor down by not getting these lungs working the way they should be. I was doing all my treatment, all my exercises, so why wasn't it working? It was rather a dejected time.

Then, very slowly the numbers started to go up a little, not by much but the right direction and this spurred me on to try even harder. My doctors had told me it could take time and that once it started to go up it would climb quickly. I was working really hard at home and was starting to see results. I was so incredibly weak when I got home that even the step into my house was very hard on my poor legs, grown extremely wobbly from years of sitting around. I could barely get out of a chair without being pulled up and still felt very much at the start of a long journey. But gradually I started to get there, my strength built up slowly, my lung funtion was steadily going up and my appointments were getting further apart.

It's still very hard work but things are now much easier than they were. I still get tired and I still have pain but I am leaps ahead of where I was in January. It has been grit and hard work and lots of pushing myself to go abit further than I think I can but my lung function is now soaring, my predicted scores are 77% and 105% respectively a world away from the 19% before transpalnt and I am now on 3 monthly appointments. In short life is good. I still have bumps in the road, and those bumps still scare the crap out of me, but I am starting to relax a little. I'm also trying to adjust to the fact that things may not always be perfect, things being good may be shortlived but while I can do the little things that make me happy I'm going to enjoy it as much as possible.

Mentally as you saw after my last post, things are better. I feel more stable now and while all the things I wrote about still bother me on a daily basis I can deal with them a little more calmly. There are still some ups and downs and lots of insecurity but thats just me! Again, while I can get by without letting it bother me too much I will try to enjoy it while I can. A huge thank you to everyone who sent messages of support on my last post, I couldn't reply to everyone (apologies for that) but please know reading each one really helped more then you could know. There are lots of positive things happening and I am so incredibly grateful for the chances I'm having now, but I'm trying to stick to small steps. Transplant is a huge, scary, life changing prospect on both sides of the op; the only way to cope with it is one day at a time, step by step. That being said I seem to have developed what my doctors call "the superman complex", basically thinking I can do everything and anything, probably taking on more than I can manage because I feel so much more able to do things! This has left me very tired out and reminds me that transplant is purely a different set of problems not a cure, I'm not even a year post-transplant and I should nail walking before I try to run ;) Anyway I'm working on it. I still find it extremely frightening to talk to new people and put myself in new situations but I'm pushing myself a lot and most of the time I end up enjoying despite being scared stiff!

My hair is improving too which has really helped my mood. I'm still a long way off from the hair I used to have but it's still there so I'm happy, if still wary.

The other major thing I've done since I last blogged, was to write a letter to my donor family. A lot of people have told me I'm a good writer, its even been suggested as a possible career but in all honesty I never really consider myself a good writer. With my blogs I just write to be cathartic, most of the time I don't even reread my posts. But this was different, how do you write to a family that have gone through so much pain and hurt yet still had the courage to end your suffering and give you hope? Its an immense task and one letter nor a 100 will never get over the gratitude I feel for them and my donor. I did however approach the letter a lot like writing a blog, I jotted down some ideas then just wrote from my heart. After a few changes on the computer I finished by handwriting it so it felt more personal. I heard back from my hospital, the the donor's hospital had passed on the letter and the family were really pleased to have had it. I am so happy that I managed to give them back some tiny comfort. I've been told they may even write back, which would be absolutely incredible, but it will understandably need to be the right time for them. The great and very flattering news was that the donor hospital were so impressed with my letter that they have asked permission to use it to encourage others to donate which is so fantastic. I'm really happy that my letter may help someone else too.

Anyway theres a long blog to get your teeth into. Next week is transplant week and I hope to be getting another very positive blog up in the next few days (with a special announcement), detailing all the things I've been up to that have been making me happy! Such a complete change from this time last year....
Stay tuned!

You Might Also Like


  1. Tor,
    I've followed your progress since about last November and I'm so pleased that things are (generally) going well for you.

    The post above mentions something about you writing a book? If you're serious and want to talk, contact me at nigel@beatentrackpublishing.com

    You may know me better as @madbouncydogs on twitter but we're one and the same.


  2. So good to read all of the above. I was reading back over your blog just the other day and wondering how it was all going for you.
    Keep pushing through - you are a wonderful lady.
    J xxx

  3. I have been following you for a while now and amazed by your courage. You seem to be going from strength to strength and should be very proud of yourself.

    John Owen-Jones Fan
    Elizabeth Xxx

  4. Thank you for sharing an update of your progress. So proud of you for keeping so positive after such a traumatic event. I hope your letter gets lots more people to sign up.