Friday, January 30, 2009

I'm on Twitter now.

So far, I've managed to add myself so I am following me. Twice. No one is quite sure how, and so I am obscurely proud of my technical (in)capabilities.

On other far more important news, this is Ethan.

How gorgeous is he? He has never left hospital. Ever. His mummy and daddy have never been able to take him home. That to me is sad enough. Sadder though is without a new liver and small bowel, Ethan doesn't have long left.

His facebook group has over 47,000 members. I very much hope they have all signed up to the Organ Donor Register.

His dad has decided that he needs a challenge to focus on, and along with some family members and friends, will be running the Great Manchester Run to raise money for LLTGL.

It's pretty humbling really. I really really hope his call comes soon. If you can, please show them your support.

Ethan is another person to add to my "please please please let their call come soon" wish list. Emmie is off on holiday again soon and so the jokes have already started as she is infamous for her disappearance from the country resulting in someone getting called for transplant. Amongst the humour there is a sad note; people laugh that someone should get called in that time but who should it be? Who is "most deserving?" the person who has been waiting longest? The person who has struggled the most recently? What about someone perhaps who has a child? Perhaps it is a child.

The answer of course is that everyone who is waiting deserves and needs that chance. Of course there's no priority of need. But I remember how hard it makes it when waiting and having friends who are also waiting. You want it for them....but you want it for yourself more. For any of you who are waiting who have felt that, please know it's natural and there's nothing wrong with those feelings. It's a survival instinct.

Life for me is good. Better than good. Much better than good. I just hope that we can continue making it better for those out there waiting.

Monday, January 26, 2009

15 Top Tips for Lung Swop Op-ers

(An idea openly stolen from fellow blogger golightly)

1. Everyone tells you to make sure your case is packed for transplant. What they forget to tell you is make sure your family have cases packed too. I happily unconscious in a hospital gown whilst they telephoned various friends in an effort to gain clean clothes before they were asked to leave for hygiene purposes.

2. Waiting is hard. The hardest bit for me was feeling I couldn’t go on and realizing I had no choice; you just have to sit it out. But you’re stronger than you think and you can do it.

3. Start telling the truth. I mean when your friends ask “how are you?” instead of the automatic “I’m fine thanks” maybe tell them a few of the things going on in your head. Some people genuinely want to know, and those people are invaluable in your mission to stay sane.

4. Change your goals. So maybe you can’t do the big stuff anymore. Maybe your new goal is that next weekend you are going to leave the house and visit a relative you haven’t seen in a while. Maybe it’s to read a certain book. Small and flexible goals are so important to keep you pushing forwards.

5. It’s not over till it’s over.

6. Accept help. To me staying independent meant doing what I wanted to do for as long as possible. If that meant using a wheelchair, a carer and various other contraptions then so be it. Strength is knowing when to ask for support, not struggling on vainly without it.

7. False alarms are a hugely emotional experience. But can be positive; you know what the real thing will be like now, and are better prepared. It’s probably acceptable to buy yourself a frivolous and unnecessary treat following though.

8. After your transplant you will have to work harder than you have ever worked before. But it is worth it, a thousand and one times over.

9. When you wake up and panic that it is still hard work to breathe, do try to remember…they just cut you open and stuck brand new lungs in. Which will delay that feeling of “woooo I can breathe!” somewhat.

10. Two steps forwards one step back. Sometimes about 5 steps back. No matter how many times they tell you this is normal you won’t believe it. And no matter how much you don’t believe it it’s still true. The road to recovery is rocky and just because you have setbacks doesn’t mean you’re not doing well.

11. Oxygen tubing is less effective at delivering flow when the bedside table has rolled onto it. Same applies to suction power of chest drain tubing.

12. Hospitals are fantastic places full of people who work tirelessly to save lives. However they have hundreds of patients and there’s only one of you. Sometimes you need to speak up to make sure your voice is heard.

13. A huge amount of patients (including myself) struggle with negative emotions after the op. Don’t suffer it alone, don’t feel guilty and try to force yourself to be happy; get help.

14. Nebuliser machines are also fantastic for blowing up beach balls, lilos and other inflatable items.

15. Someone once told me your old life as a chronically sick person kaleidoscopes down so fast, you almost forget what it was like to be that ill. I didn’t believe turns out he was spot on.

Friday, January 23, 2009

Dear Gaz,

I can't believe it's already been 4 years today since you left us. Where has the time gone? You were my first really close friend who was a CFer, and to be honest the first person who truly appreciated my stripy socks as much as I did.

I still think about you lots. Mini-Gaz and Mini-Em are sitting at the top of my wardobe! Mini-Em's hair grows more and more inexplicable as time goes on. You are mentioned at the bottom of the LLTGL website as our inspiration and drive to get on and launch those T-shirts.

I often try and imagine what you'd be doing now, I suspect the web would play a key role in your job! You were so good at web stuff, it's only now I look back and realise how poorly you were at the time that I see what an incredible achievement was.

I still miss you an awful lot. I still get sad when I think that we could still be having those chats and giggles....if you had got your transplant in time. Not much else to say really, except that I miss you. And you continue to inspire me to live my life as best I can and to continue raising awareness and hopefully saving lives. xx

Sunday, January 18, 2009

Today is a very special friend's birthday.

Happy Birthday Emmie; I hope you are feeling better and enjoy your day!

lots of love xxxxx

Tuesday, January 13, 2009

It's been a tough 24 hours.

A friend of mine got his call for Transplant back in September. He had a complicated recovery (didn't alarm me due to my history) and I grew quite close to his partner, chatting to her as often as possible and spending the day with her when I was up for Clinic.

New complications sprang up a few weeks ago - septicaemia and infection in the lungs. With confidence I reminded his partner that I'd taken a very similar track indeed, and a few weeks later after scaring my family (and the team) to pieces, I was back on the mend.

Naive confidence perhaps, as yesterday I got the horribly sad news that he hadn't made it.

This tragedy is not about me in any way shape or form, but this blog is so I'm going to be self-centred on it as is my privilege as the author.

The mixture of emotions swimming round is immense. I have grown pretty close to his lovely partner and imagining what she is going through breaks my heart. It reminds me how lucky A and I are to have celebrated our first wedding anniversary in November. How lucky my family and I are to have celebrated a busy, noisy, rowdy Christmas together. How lucky I am to have just marked my 2nd year anniversary with my new lungs.

And of course, that feeling which always accompanies the loss of someone in a similar position; survivors guilt. The futile but natural ponderings on why I survived and he didn’t. There’s no rhyme or reason, I’m fully aware of that, but it doesn’t stop the questions.

Being a transplant survivor and campaigner, I am self-conditioned to put my faith into transplantation being the answer. Of course it is the answer, well the only possible one, for people such as myself who will otherwise die. But that doesn’t make it foolproof. Transplantation is a risky business; it’s a complex procedure which is why it’s only used when all other avenues have been exhausted. But it offers a hope; the chance of a new chapter with renewed health.

It’s a strange and helpless place I find myself in. When I lose a friend pre-transplant, my answer is to throw myself even harder into campaigning and raising awareness. But this was sadly a transplant which was not a success. A rare but devastatingly hard scenario to face.

In amongst my self-wallowings, my thoughts are with his family, his friends, and his gorgeous wife. And all my warmest wishes go to them during this very sad time.

Friday, January 09, 2009


Does anyone watch it? I used to be a huge fan (admittedly predominantly driven by my desire to be treated by Dr Kovac) but I haven't watched it for a while. Just a warning, if you are hoping to catch up on last night's episode, don't read the rest of this blog.

Flicking through the channels last night, I noticed the new series was starting. Not just the new series, the very last ER series. I figured I'd watch it, ER like most TV dramas is fairly easy to catch up on, even after a prolonged period of absence.

An ambulance had crashed, or exploded, or spontaneously combusted or something, and two of the lead characters (Abbie Lockheart and Dr Pratt for any followers) were on board. Both appeared to have minor injuries and were taken to the hospital where it was discovered Pratts were more extensive.

Pratt's brother (this is an assumption based on dialogue as I didn't recognise the character) was present whilst the doctors worked hard battling various complications that arose. Once he was stablised and on bipass, a different doctor came in to do some tests on his brain which revealed no cerebral activity.

Dr Smoulderingbutpainedlooking took Pratt's brother aside and told him that in his wallet, Pratt carried a donor card. His brother through gritted teeth answered "he's not dead yet" but agreed that should it come to that he would give consent.

Several hours passed (apparently) and the brain stem tests were repeated. The team explained to the brother that there was no activity, that there hadn't been for 4 hours and that the bipass was doing all the work of his heart which was also gone.

So far I know this is sounding like a pretty typical TV drama (well it is) but there were a few key elements that really struck me. There were a lot of close ups on the character throughout, and he looked very much alive, just like he was sleeping. There was no screaming from those around, no spurting blood and machines going off, it was all very peaceful and he looked...stable. This is, in my opinion, one of the biggest hurdles in Organ Donation, where you are being told someone has gone but your eyes are telling you something completely different.

The team then explained that he would be taken to theatre on the bipass machine to preserve the organs. They wheeled him slowly through the corridors, with members of staff gazing sorrowfully in typical TV drama style. By this time, I was sobbing, not just the odd tear, those huge noisy ugly sobs that rip right up from your chest. Some of it was to do with the fact that I cry at most things on TV (thank you mother for that gene) but there was a bigger part of me which hurt for all families who have had to go through that, who have made that decision and who have been so very brave.

I felt on the whole it was a good portrayal; the organ donation bit didn't actually dominate the storyline; it was a big part, but was made to seem like the norm, the right thing to do, no matter how hard. Also, this wasn't just a one-episode character who made an appearance to be an organ donor and then was never heard of again, this was a main character, a character who many viewers will have watched develop over the years.

A long blog about an episode of a TV drama. Hmm. But I had to talk about it as it did affect me quite deeply. TV can do that kind of thing you know.

edit - apparently you can watch the episode on catchup here.

Friday, January 02, 2009

Happy New Year!
I hope everyone had a fantastic and sparkly Christmas - mine was wonderful and consisted predominantly of family, food and a great deal of fun.

I caught another cold (4th this winter) in the run up to Christmas and it really hit me hard – one of the reasons I went so quiet. Dutifully, I headed up to Harefield to be checked out and was horrified when they mentioned the words “acute infection” and “IVs” to me. Looking back it was a pathetically over the top internal reaction – as a CFer I used to have IVs all the time and there are hundreds of pwcf out there who still have IVs all the time and don’t bat an eyelid...but it’s true what I was told pre-transplant; you get used to being “normal” ever so quickly.

Anyway. They gave me some orals and I am to go back on Monday. But the great news is the Temperatures have stopped as have the other horrid symptoms and I am fairly confident that I will be sent away IV-free. Lung function remained pretty much stable which is obviously the most reassuring sign.

Feeling so ill this side of transplant hit me in a variety of ways. Firstly, I panicked as I am not used to being ill now I am well (comprehend that sentence if you can). Secondly and more horribly, I was able to remember properly for the first time since transplant how it used to be. Now I’m so well, it’s very hard to take my mind back to life pre-tx as my entire body feels different and memory relies on sensations and feelings as well. But I was transported back to lying in bed all the time and it shook me quite a bit mentally (am still randomly welling up/crying at the smallest thing, most amusing example being when I was telling my mum about crying that morning I cried remembering how I cried. Hmm.)

Now I’m feeling much better the strangest feeling left is one of guilt; I feel like compared to my old CF-state (and to many of my CF friends) I had no right to get in a state or to moan as much as I did…I’ve put up with worse and others are still putting up with worse. But then I was scared; I was told it was an acute infection and that can cause rejection….but then once the antibiotics kicked in within two days I was feeling so much better. It made me feel fraudulent as before it would take me weeks if not months to recover. Does that mean it was less valid? I’m unsure, but just very glad these orals seem to have worked.

Nearly two years on (in 2 days!) and I am still getting used to my new lungs. I suppose I worked with my old ones for 22 years so I shouldn’t really be surprised that there are still unknowns hidden around corners.

Other than a bit of crappy health luck, Christmas and New Year were fabulous. I always get a bit emotional at New Year and was reassured that several other Transplant patients reassured me that they do too. I think it’s just such a marker that anyone who has been through anything vaguely life-altering will find a whole sea of emotions well up in them at that time.

New Years Resolutions for 2009? The same ones I always make (and never keep) such as being more organized, tidier, etc, but also not to take things for granted. I always worry slightly that I am in danger of doing that the further away my old life becomes, and I never ever want to forget how lucky I am.