Sunday, September 13, 2015

Transplant Talk.

As I type, today marks the end of national transplant week. I've held off writing anything about it myself so far mainly because I'm terrible at writing in a serious manner. I'm not sure it is appropriate to say: 'Transplants eh.. HAAAA HA HAAAAA.' On anniversaries my husband writes beautiful moving words in his cards and I'm just 'I love you because you make a bloody great cup of tea LOL.' Whilst he's sat and really thought about his words I'm sat making myself giggle like a muppet. Imagine me as a sympathy card poem writer. Best not to go there.

Sometimes people don't quite understand what being on the list is like (why would they?) and that's mainly because I don't tell them. Having been on the list for nearly eleven months I think I can now say that it is hard work. One day I'll be okay and the next I'm crippled with anxiety that comes from nowhere, except it hasn't come from 'nowhere'. I'm on the transplant list. On a normal day I wake up and think 'I wonder if I'll get a call today' and I'll pretty much manage to put it out of my mind, maybe for a few hours or maybe for the whole day.  Other days I'll panic that I will never get a call and imagine the consequences of such a situation. What will my husband do? Will my son cope? On the same day I'll panic that I will get a call.  I'm not ready, I'm not sure I'm ill enough, what if the doctors got the tests wrong, I'm fine and it's all a mix up?

Changes to routine now make me anxious. People plan things and say 'oh we're doing this next week' or 'oh we're doing this in six months time' and a very small part of my brain will say 'brilliant' and the other big part will think 'aaaaarghhhhhhh'. That's because I find it hard to think beyond next week, never mind months into a mystical future. It is difficult and scary. If I have made plans to do something then I'll panic that I'll get a call beforehand and it will mess things up. When the plans have been completed I think 'Well I can relax now because we managed to go out without getting a call.' You get the idea. On top of that I can't foresee how tired or breathless I'll be on any given day so making plans is difficult anyway.

Trying to avoid ill people is a speciality of mine, I can't wrap myself up in cotton wool but for example the last time I had a slight cold it ended up with a hospital stay. I'm a bit of a control freak and although I try to 'control' my health by doing all the right things, it is unpredictable and I certainly can't control if I get a serious infection or if I get new lungs.

Some days I turn into Carol Vorderman (or mathematician of your choice) and try and work out the averages of when I might get another call (I've had two false calls), because you know that's exactly how it works. Other days I might do something momentous like tidying up my side of the bed and think 'Well I can relax now because if I get a call then everything is tidy.' Yes, phew. Otherwise I couldn't possibly go through with it. Sometimes I'll ask my husband if he thinks I'll get a call today and half expect a serious answer. Other days something will happen at home like the dog puking up on the floor or the washing machine flooding and I'll think 'Oh great, I bet I'll get a bloody call now.' As if that would be a bad thing.

Then I worry about becoming a 'Facebook statistic'. I have friends that have been through various scenarios with their health and their transplant outcomes are all different. You catch up on their news  through their various Facebook statuses. I sometimes wonder what my own outcome will be. I should probably come off Facebook.

Then there is the guilt I often feel about being given the opportunity of a transplant.  My son is eighteen next month and I feel I should be thankful I've managed all that time to nag him bring him up when I know there are people on the list with babies and young children.  I have days when I think I'm being greedy in wanting more. Also I'm a 'high functioning' person with low lung function. I don't need help to breathe and only have occasional oxygen. It doesn't mean I'm healthy; my lung function hovers between 19 - 21 per cent. On paper I'm classed 'end stage Cystic Fibrosis'. I don't relate that to being about me at all.  Hearing that from the doctor is odd. I feel like looking behind me to see if they are talking about somebody else.  It sounds harsh but that is because it is harsh. However in the words of my Cf nurse, when I fall I fall hard. It would only take a couple of serious infections and my lung function reserves aren't exactly brimming.

Ultimately if I don't get new lungs then I will die and quite honestly I'm not ready for that.  My time as a mother/wife/daughter etc will run out. I'm never going to be brave or inspirational. I just want to live my life with my husband, my son and the dog. I don't necessarily aspire to climb mountains or run races, I just want to live without the restrictions that my health places on me. I want to get back to work, do the gardening, walk to places without getting knackered, go shopping properly (even though I hate shopping) and I would like to have a shower and wash my hair without it feeling like I just climbed Everest. I want to laugh with my husband every day and see my son grow from teenager to man. Simple things for a simple life.  Also I'd like to wear a bra properly. When you are breathless, a bra is surprisingly restrictive and no one wants to see the effects of a non bra scenario. Oh yes and my husband often carries my bag like he's my personal assistant because I can't be expected to walk, breathe and carry. Let's not get ahead of ourselves. I fancy the idea of being able to cook a meal and eat it rather than cooking it and then being too tired/in pain to eat.

The anxiety and the 'not knowing' is the worst thing. It can be tricky enough dealing with normal life but the breathlessness, pain and worry of keeping well enough for transplant is on another level.

I'm only one example of what it is like to be on the transplant list. There are many more people with different  stories and needing different organs. Without the donors (the kindness of strangers) there are no transplants. Please sign up and become an organ donor and more importantly, let your family know your wishes. Without family consent the donation can't go ahead. Talk to your family about your wishes. It takes two minutes to sign up but it can give a new lease of life to multiple people.

Sign up here to help someone.

I'll leave you with some advice that well meaning people give to me about being on the transplant list that make me swear in my head but yet nod politely.

  • You've just got to try and forget about it. Wow, I hadn't thought of that.
  • Any news yet? I might have mentioned it in passing if I'd had news
  • You might have had a call by the next time I see you! No words for this one.
  • I bet you can't wait for new lungs. I'm not waiting for parcel from Amazon.
  • You just need that call now.  Yes, yes I do. Thanks for that.
  • Third time lucky Hmmmmm.
  • At least you had a trial run! 
  • Bet you can't wait to be all better. 
  • Can't you just go private? Seriously?
  • But you look so well. Do you expect me to be crawling around on the floor?
  • Have you got a date through yet? Someone on Facebook (Sarah) just reminded me of this one and I've also had that said.

Over and out.