Three blog posts in one week what a lucky lot you are!

As promised this is quite a special blog post. This week is National Transplant week and it led me to think a lot about this time last year and how much has changed. This time last year I had barely left the house for weeks, was severely out off breath, and was coming to the end of my life. Every single day was tremendous effort to just keep breathing, and I felt I was exsisting rather than living. After 4 years of waiting I had noticed a subtle change, while I was alway tired and worn out I always found the strength, however small to carry me through. But during those last months, the weariness had increased, I felt so incredibly tired both mentally and physically; for the first time I began to believe I wouldn't be able to carry on much further, I simply wanted to sleep and not have to drag myself up for another day. I was under hospice care and unbeknownst to me, my parents were told that I was unlikely to see Christmas if I didn't get my transplant.

And then in October 2011, my life changed forever.

Skip forward a year and this National Transplant week is vastly different. Admittedly its still a hard journey, its been a lot of hard work to get to this point; but I have a life, a future, I feel 100 times better than before and I am blessed to lead such a life. Last year I made a video plea to encourage people to become organ donors, this year I decided to give it an update. I think this video says it all. Please watch and see what a difference organ donation can make. Click here to view
http://www.youtube.com/watch?v=47FKzEM35K0&feature=plcp

Since getting my transplant here are some of the things I've been able to do that would have been impossible without the gift of life.

I celebrated my 25th birthday, a day I never thought I'd see.

I am planning a few nights away from home which I've never been able to do before.

Uni is hard work but progressing quickly now. I have finally sat the exam I deffered 3 times due to being so ill, and have registered for the final parts of my degree. All being well I should graduate next September.

I've been to the theatre, and loved every second of it.

I've met my baby niece who I didn't think I'd live to see.

I have a holiday to Center Parcs planned, and have managed a couple of (tiring but fun) weekends away, the first in 5 years.

I've found a new love of cooking. Started art classes and resumed my singing lessons which never fails to bring a smile to my face. Singing was something I missed terribly and having it back makes me an extremely happy girl. I feel I am finally getting the Tor I lost back again.

The most challenging (and in fairness stupid) thing I have decided to do, is to sign up for the London Parks Half Marathon in October. The half marathon will be 3 days shy of my 1 year post transplant anniversary. It was something that seemed an impossible dream while I recovered in hospital but is now becoming reality. It will be an incredibly difficult challenge for me, training is very difficult and I regularly get exhausted still and suffer with pain. However I am determined to get as far as I can. I will be raising money for my hospice and HArefield transplant unit, I will be walking in memeory of my amazing donor and the friends I've lost who would have loved this chance.
Click here for my fundraising page, http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=TorTremlett&faId=232356&isTeam=false I would love it if you could donate and encourage others to do the same.

I never forget that I am one of the lucky ones, there are still 10,000 people, 3 of whom die every day waiting for a transplant. Please Please, pass this post on to as many people as you can so they can see the benefits of organ donation. Transplants save lives and I intend to keep fighting so more people can have the unbelievable chances that I've had. Thank you.

Join the NHS Organ Donation Register

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!