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.

Wednesday, June 17, 2015

Transplant Call 2.

Call number two happened. Not in a bowel sense, I mean a second transplant call. It was 9.03 am on Sunday 7th June and Tim had just got back from dropping Adam off at work. I was busy laughing to myself at the fact my teenager had to be up and out of the house on a Sunday morning as I was starting on my first cup of tea of the day in bed. Then due to my smugness my transplant phone started ringing. Tim handed me the phone and because the number wasn't withheld like last time, I immediately thought it was a PPI cold caller (which has happened before on that phone and I had a fit of the vapours). Immediately, I was fuming. FUMING. How dare I get a PPI call on my transplant phone, especially on a Sunday morning and spoiling my smugness. Bastards. I said 'HELLO' in my most mean and sternest voice which Tim pointed out is my usual voice. So here we are.

Me: 'HELLO'  You utter wanking idiot, this is my transplant phone.

PPI Caller: 'Hello, is that Jayne?'

Me: (still in my mean voice) 'YES.'  Oh great, a PPI caller who is trying to be over friendly and somehow has my name, just wait until I verbally unleash my thoughts. 

PPI caller: 'Hello, we have some possible lungs for you.'

Me: 'Mmmmffff.'  Wow, these PPI callers are offering more than I bargained for. Oh wait. I think she said she was calling from Harefield and has new lungs, I'm beginning to doubt it's a PPI caller now. Oh. 

At this point I went into a little panic. Last time I'd been mildly panicked but at least methodical. This time I stood and repeatedly swore and went for a quick shower doing the same. I have no idea why I did that but it seemed to help. At the same time, we tried to get hold of Adam. He works round college hours at a service station Subway. Adam knew his phone was ringing but was on his own in the shop for a few minutes and had a huge line of customers. He also immediately knew that I'd had a transplant call but there wasn't a lot he could realistically do until his colleague got back. He said his hands were shaking because he realised why we were calling him. He carried on serving and one particular customer was horribly mean to him and acting like a real know it all idiot because Adam became slightly flustered. (To THAT person, I really hope you rot inside a little bit in your cock area because you are vile). Adam managed to explain to his supervisor what had happened and we picked him up. Except there is a north side and south side to the service station, we went to the north side to collect him but Adam had legged it over to south side, so we went to south side only to discover that he'd legged it back to north side. It was funny in the end, but maybe you had to be there.

On the last call, we had barely made it into the hospital car park before they had called it all off, so I was fully expecting not to step foot in the building. However, the phone remained conspicuously silent and I was admitted as a possible transplant recipient. This was a whole new experience and it felt very odd. I had bloods taken and observations etc. There was a lot of waiting and we were given an indication of what time the surgery would go ahead if everything went to plan. This felt extremely real and yet surreal. A few hours in, a man wandered in to my room picking his nose and brandishing a roll of paper. I thought he was a hospital porter. He hung back as a nurse finished whatever she was doing. Adam immediately started pretending to pick his nose with his fist trying to make me laugh. The porter then gave himself a hefty promotion and introduced himself as the surgeon. I was already trying not to giggle and the fact he was now the surgeon made it worse. Then I was in awe of him because his hands had saved loads of lives. He could pick his arse for all I cared.

The surgeon went through all the paperwork and asked if we had any questions. With hindsight, Tim made the terrible mistake of asking how long the surgery would take. Oh. My. God. Or as a the youngsters say OMG. It went like this but in a possible Swedish accent:

'Weeellllll, I cannot say 'ow long it willlll take because getting out ze lungs can take hours you know? We lift up ze chest and scoop out ze old lungs and getting out one lung can take ages because they can stick you know? I mean Jesus Christ, I could tell you eight hours and if it took twelve, you'd be having a stroke because of ze worry. I scoop them out and then there might be bleeding etc, and I can't possibly say. I mean I never like to give a time you know? Then getting the new ones in takes time and it's complex with ze chest lifted up and bypass. I don't want you to have a stroke by giving you a false time. Did I mention strokes? And blood? BLOOD.'

It's fair to say that Adam looked green at this point and Tim looked aghast. I signed the forms and hoped that Tim wouldn't have a stroke. At this point, I truly believed that the surgery might go ahead and as Adam had left the room for a second (presumably to throw up) I asked Tim to look after Adam for me and was planning on asking Adam to look after Tim. To be honest, the whole idea of them looking after each other just reminded me of the word 'chaos' but I felt I had to say something vaguely touching. Saying 'don't forget to feed the dog' seemed less moving somehow.

I digress. My bowels by this time were pleading for an actual number two but at that point the transplant coordinator breezed in and said 'I'm sorry, there's a problem with the lungs, so you can go home.'


That was that then. I felt really angry inside and two of my friends had turned up just as we were told it was a no go. If they hadn't have turned up then I think I'd have lost my marbles for a little while. We all had a cup of tea, put the world to rights and made our way home.

This update ends quickly because that's literally how it happened at the end.

I'll keep you posted.

Over and out.

P.S. Whoaaaa. Forgot to add the most moving part of the whole day. Tim looked at his phone and the following conversation was had.

Tim: 'Can you send me a nice text or something?'

Me: 'Why? I'm in the room with you.'

Tim: 'Well just send me a text saying I love you or something otherwise your last ever text to me might be the one you sent three days ago saying "I've had three shits in two hours, I'm barely a husk of my former self."

Me: 'Oh yeah, good point. Okay,'

Over and out. Again.

Saturday, March 28, 2015

Transplant Call.

Having been on the transplant list for five months I'm still getting used to being on the list and still have conflicting emotions every now and then as to whether I'm doing the right thing.

These feelings were put to the test on the morning of Tuesday 17th March when I was woken up at 5.50am by what I thought was Tim's work alarm going off extremely loudly. My initial slumber induced reaction was 'Why the bloody hell is Tim's alarm SO loud?' I tried not let it wake me up and then nagged asked Tim to turn his alarm off. Tim sat up, looked at me and said 'It's your transplant phone.' he handed it to me and I just stared at it. It was a withheld number. I immediately thought it was a mistake because it rang off just as I answered. I'd decided it was a definite wrong number. Then seconds later it rang again.

This time, a voice at the other end of the phone asked me if I was Jayne (yes), said they were the transplant coordinator from Harefield (oh dear god), asked how I was (nervous now they'd called me) and casually mentioned that they had some potential lungs for me (ohhhh, this shit just got real). I looked at Tim and sort of mouthed the words 'new lungs'. At this point I was filled with a sense of trepidation that I can't really describe. I mean for goodness sake, I hadn't shaved my legs for over four days and I had a mountain of washing to do. I asked the transplant coordinator if I had time for a shower. I was advised that I should just make my way there but have a cup of tea first. Good plan. I looked at my husband who probably felt as groggy as I did and realised that potentially everything could be about to change. We held hands through the call and it kept me calm.

Tim went to rouse the teenager which to be honest would probably be one of the greatest challenges he would ever face (waking a teenager) and then he put my pre packed transplant case on the bed. I started to chuck in every conceivable charger that I ever owned, demanded that Adam go and find me some hair conditioner then packed every single piece of make up that I have. I rarely wear make up. Why would I need make up? It seemed important at the time. I packed everything from my bedside table and my top drawer. Then I progressed to pulling some clothes on, 'what the hell do you wear for a transplant call?' were the words that I muttered to myself. I phoned my mum to tell her I was popping round to drop the dog off. The dog looked terribly confused by the early morning activity. She looked positively scared by the sight of a fully dressed seventeen year old before midday.

We somehow got everything in the car, and then Tim handed me three flasks of tea to hold. Bearing in mind Adam (teenager) doesn't drink tea, I was a little confused as to why I had to hold three flasks of the stuff. 'They said make tea,' explained Tim, 'so I made enough for the whole journey.' It was splashing round everywhere on the way to my parent's house. By the time I got to their house I was a bit stressed, tea everywhere with a dog who was so confused that she forgot to bark. This was getting more and more surreal by the minute. My dad opened the door and I instantly handed him a flask of tea, 'I can't drink all this!' I exclaimed and acted as if I was off to a clinic appointment.

Then we began the journey to Harefield hospital.

As I left the house it occurred to me that I may not actually ever come home. Having lost a few friends post transplant last year, you can't help have the occasional dark thought. It is quite sobering, especially when you're trying to remember if you locked the patio door. As our journey progressed I decided that I was ready for this. I could be home well in time for summer and enjoy planting the hanging baskets and tubs which is my favourite time of year. The positive thoughts I had at the prospect of what might be about to happen actually surprised me. No more breathlessness or pain. I've always had trouble accepting that I'm 'transplant ready' which is a totally normal response. It's apparently rare that people who need transplant actually think they need one.

When we got there, we were unfortunately told that the donor lungs were a 'no go' and they had to step down due to an unforeseen problem. It was very deflating and at that point we didn't really know what to say to each other and didn't know what to do with ourselves. We went to to the canteen and had tea (I'm not joking) and I said that we should all eat a cooked breakfast. We all ate the full works in the unassuming surroundings of the hospital canteen. It was weird. It was surreal  (the whole experience, not the food). We got home by midday and the teenager went to college and Tim logged into work.

It wasn't until the next day that it hit me. I could have been waking up to new lungs, but instead I was doing the ironing and telling the dog off for barking at the postman. Nothing had changed and yet everything in my mind was mixed up. The simple fact is that life goes on as normal and now we hope to get another call.

It took me a few days or so to recover from the experience both mentally and physically but a lot longer mentally. I was stiff and ached from head to foot for a few days and I think it was because I must have held myself funny in the car on the way there and not realised how tense I was. The main thing is that we all remained calm, even me. My main worry now is what if next time I'm not well enough for transplant? What if I don't get any more calls? Etc. I guess you can't think like that. It's easy to focus on the negative. Much better to think of the good things. Summer for instance. Tea. Cooked breakfasts.

I'll let you know if anything else happens.

Over and out.