Thursday, December 18, 2014

Transplant Referral

Having recently gone on the transplant list for new lungs (due to Cystic Fibrosis), I’ve had comments that range from ‘you must be so pleased’, ‘how exciting’, ‘well done’ and ‘it’s great that you qualify for new lungs’.  I think I must be in the minority in the fact that these comments get on my nerves. Someone even commented ‘Oh, I didn’t think you were ill enough’. Well what you think and what you know are two very different things. 

So with that in mind here is the story so far.

I’d had thirty per cent lung function for a good few years and managed quite well. My body adapted to it and I’d worked round my sometimes limited capabilities. Independence is key to me as it is with anyone. I’d rather push myself than have things done for me. Why have someone make me a cup of tea if I’m perfectly capable of doing it myself? My lungs aren’t going to work well if I don’t push myself and while I have that luxury of independence, I’ll make the most of it. 

In May last year I hadn’t felt great for a few days but I knew I had a clinic appointment booked that week. On this particular day, while walking the dog and trudging round the meadow like an old woman I suddenly had a sharp pain in my chest that made me say ‘Oooh.’ Actually I said ‘fuck’ but my Mum will probably read this and I don’t need her to know I swear. The dog unaware of my situation carried on chasing squirrels. When I got home my neck felt tender so I assumed that I was coming down with a virus. When I looked in the mirror (I’m a vain sort) it looked like I’d comically swallowed an orange that had lodged in my neck with hilarious consequences. The swollen skin felt like rice krispies when you touched it. After being declared okay by a Gp, I went to the cf clinic the next morning still looking like I'd swallowed an orange and with chest pain. The cf nurse took one look at me, magically  produced a hospital wristband out of nowhere and declared that I wouldn’t be allowed home because I’d had a pneumothorax. The swelling in my neck and shoulder was the air that had escaped from the lung and become trapped under the skin.

The hole in the lung wasn’t quick to heal and it was in a funny place. Surgery was discussed but it was a gamble with no guarantee of success.  At this point transplant referral was mentioned and I was horrified. In fact I was devastated. I remember calling my husband in a total state and asking for gin. It wasn't something I was expecting even though I'm in my 40s but I thought I was invincible. Having always plodded along nicely with low lung function which was now twenty five per cent I thought everyone was being dramatic. 

Then in the August I had an infection that was deemed life threatening (and I still didn't think I was that bad). I was on holiday in Spain at the time but that's a whole new story. We'd booked Spain before my pneumothorax and had to cancel the flight and book a ferry because I was no longer allowed to fly. Getting home was interesting.  However part of me knew things weren't good and for the first time I started having episodes of hypercapnia at night which means that you are showing signs of respiratory distress and can't get rid of the carbon dioxide in your blood. As a result, you can't wake up properly in the morning. It is like being trapped in your thoughts with a terrible headache and being vaguely aware of things around you but not being able to communicate or do a lot about it. Once you are awake and moving it slowly disappears. It is a weird/horrible sensation and I imagine a natural alternative to taking drugs. Or drinking too much gin. Or both. It scares the life out of my husband whereas I just feel as if I'm off my face. 

With another bad infection last Christmas and with my worst period of not being able to wake up in the morning due to hypercapnia, transplant referral was discussed again and the doctor decided to refer me. This isn't a decision that any cf doctor takes lightly and they don't put you through the process if they think you don't need it, but with a larger probability of me dying in the next two to four years, it seemed like a good time. There were pre tests done so results could be included with the referral letter and sent to the chosen transplant centre. When they received all the information, I got an appointment. 

Referral does not mean you need a transplant, it just means you have tests to see what your lungs and body are doing. On the first appointment I was told that (after more tests) I would be given one of three answers:

1.  You are currently too well for transplant but come back in six months and we'll review you.
2. Looking at your preliminary results it is a possibility that transplant could be an option and you should come back for further tests if it is what you want.
3. We've looked at your notes and results and have come to the decision that you aren't a suitable candidate for transplant.

I instantly assumed and decided that I'd be told I was too well and was confident of this when I got called into the doctor's office. It was just going to be a formality and this was all a silly mistake. However I was advised to go back for a two day inpatient assessment because my lung function and recent history indicated I may be transplant ready. To say I was shocked was an understatement. In fact I'd have been less shocked if the doctor had walked in naked, sat upon a unicorn and told me he was my dad. I get told all the time how well I look, how could I possibly be considered for transplant? By the way, being told how well you look every time you see someone is really annoying. Do people expect you to be crawling on the floor with blue lips? It's my innards that are fecked, not my outer bits. Apart from my hair, it's a bit wild if I don't brush it.

So, the shock. I was mute. I had no questions, no words and no apparent vocal ability. My husband felt the same. I couldn't look at him because I knew his face would show every emotion that I wasn't ready to see.  In fact we went straight to the pub round the corner and I consumed a rather large brandy as Andy Murray crashed out of Wimbledon.

A few weeks later I had the two day stay for the rigorous testing. This included CT scan, exercise test, lung function, bloods and a few I can't recall right now. You also meet the transplant coordinators and get given a lot of information about transplant and the pros and cons. It is a difficult and emotional process and the idea of transplant isn't exactly 'sold' to you. It can apparently be like swapping one set of problems for another and it isn't an easy listen. One of the difficult aspects was being given a checklist on what sort of organ you would be prepared to accept. Smokers lungs? Someone with a chequered sexual or drug history? Lungs from someone of 65 or over? It was like gruesome checklist.

 Over the two days of the tests, I felt like I was having what I considered to be a 'good lung day'. I was confident that I'd nailed lung function and decided that this really was a silly mistake. Surely by now they'd look at my results and would even question if I had lung problems. In fact I said to my husband 'In their face! I've walked this, we'll be fine.'  The transplant co-ordinator said he'd call me two days later after a meeting to discuss my case. I knew they would say that me needing a transplant was crazy talk. My husband tried to reason with me but then I got cross with him for being what I considered negative. 

On the Thursday afternoon, the transplant coordinator called me. He said 'We'd like to offer you a place on the transplant list (if I want it) .... blah blah blah. Have you any questions?' Once again I was mute. I had no words, no questions and no apparent vocal ability.  I ended up saying ' Do you mind if I call you tomorrow? I need to speak to my husband.' Then I hung up and wished for gin. This wasn't good news, exciting or good that I'd qualified. I genuinely thought it was a mistake. It took a while for my husband and cf team to help me realise what I needed and that my life had changed a lot even though I thought it hadn't. 

However at least I have the option of a chance of new lungs, some people are told they aren't at all suitable for transplant and some people choose not to have one at all. I still have moments where I think everyone is over reacting. I've had to slow down a lot and I have to choose my daily activities carefully. Even as I type this, I still feel it is about somebody else.

That's it really. I've been on the list since 22nd October of this year and it is a funny experience. I'm still at the stage where I hope the phone won't ring which is apparently a totally normal reaction. Some days I'm totally paranoid about something happening and other days I'm not. Maybe I'll write more about this if anything changes. Maybe I won't. Whatever happens I've got a great husband, teenager and mental dog to be looking after and that's what I'll continue to do for as long as I can. Gin anyone?

If you aren't an organ donor and would like to become one then it is quick and easy to join the organ donor register but more importantly you must tell your family of your wishes should anything happen to you. Click on the link below and sign up. If you haven't thought about it before then give it some consideration. This simple act of kindness can literally give someone a new lease of life.  Organ Donor Register.

Wednesday, July 16, 2014

My continuous 'things that get on my nerves' list because I'm in a continuous bad mood.

1. People who spell 'on route' instead of  'en route'.

2. People who say 'should of' instead of  'should have'.

3. People who call a small group of friends a 'click'. It's 'clique'. CLIQUE. Understand? Not a click. Cluck off.

4. Smug grammar pedants.  (Oh. Me then.)

5. People who exclaim 'That's GREAT news!' if I mention that I may need a transplant. No it isn't. Fuck the fuck off. I'm obviously not stoic enough about the whole process.

6. People who use inappropriate language to make a point (see point 5).

7. People on social media who say stuff like 'I love my friends, you know who you are'. No we don't. We need names and addresses in case of any ambiguity.

8. People who wear so much  perfume/aftershave that you can smell them an hour before you see them. You know who you are. Peter Jones, 44 Viewfieldpoo Walk, Tufton Grange, TG12  P00.

9. People who feel the need to tell me I look well EVERY time I see them as if this is some sort of miracle. What do you expect me to look like? A corpse?

10. People who write lists in a passive aggressive way to make points about things that annoy them.

11. Vince Vaughn's voice.

12. My voice.

13. The dog when she barks at ants creeping past the front door.

14. Ants creeping past the front door. It makes the dog bark.

15. When I plug in a USB cable but it is the wrong way round so I turn it over to try again only to discover that I had it the right way round in the first place.

16. When I make a nice cup of tea, sit down only to discover I didn't boil the water.

17. When I make a nice cup of tea only to discover I forgot to put in a tea bag.

18. When I panic lose my keys in my bag and then remember they are in my pocket.

19. When I panic lose my keys in my pocket then remember they are in my bag

20. When I'm idly flicking channels on satellite television and it's 'advert time'.

21. When I have to try to ignore the fact I need a wee when I've just got comfortable in bed.

22. When Claudia Winkleman stands in for Ken Bruce on Radio 2.

23.When people on Popmaster with Ken Bruce (quiz on Radio 2) say:

a. I'm a plumber (or other profession) 'for my sins'.
b. It's before my time Ken (so was Hitler but we know he was).
c. Can I say a quick hello (only to go on to name every person in Great Britain).

24. When your teenager empties the dishwasher and you can't find anything because it has all been put away in the wrong cupboards.

25. People who use the word 'your' when they should use the contract of  'you are'. (My Auntie Mary made me add this just this second)

26. The fact that I'm terrible at proof reading my own work.

Thursday, July 3, 2014

Last week I misplaced an important document that I thought I had put in a safe place. I'd obviously put it in a very safe place because I couldn't find it anywhere.  I needed a national insurance number. I decided it would be fine because I could call HM Revenue and Customs and get a copy of the document sent out to me. I went online to find the appropriate phone number and I called. It was a terrible automated service. After I'd pressed 1 for help, 2 for lost national insurance numbers and 3 for a nervous breakdown I was advised to do it online. When I got online again it advised me to do it on the phone because the online service was unavailable.

It was a vicious circle and when I phoned up again the stupid automated woman wasn't prepared to listen. She kept trying to tell me what to say. I managed to record the phone 'conversation' with that stupid, annoying automated phone woman. Eventually I printed out the documents and sent in a request by good old fashioned post. That was two weeks ago though and I've still not received it.

It is lucky then that after an hour after having a nervous breakdown trying to sort out getting a copy, I found the document on the top of a pile of papers I'd already rifled through four times.

Here is the conversation.

Tuesday, June 17, 2014

Birthday Candles.

I do admit to being a bit of a germ phobe. It's not terrible, but I won't go out without antibacterial hand gel and I won't touch door handles when I go to the shops. I'm definitely an elbow and knuckles kind of person. I once saw a bloke pick his nose, drag his palm across his hairy nostrils and proceeded to put his hand all over the shop door handle to push it open. No thank you. If he did that in public it made me worry what he did in private. Goodness knows what would be on my hands if I touched the door handle after that.

With that in mind when I go to a kid's birthday party you will never ever, ever, never, ever find me eating a piece of birthday cake.

I'll tell you why. The blowing out of the candles. It usually involves spittle. Lots of spittle. Possible snot. All over the cake. I can't bring myself to eat it. 

Little Johnny Picky Nose is all excited for his birthday cake. All the kids gather round excitedly to blow out the candles. The kid with swine flu wants to help blow out the candles so they won't feel left out. Everyone blows. It's like it is showering a fine rain. That's not even enough! Oh no. The kid at the back with a touch of Ebola virus is crying because they wanted to blow out the candles too but couldn't reach. The whole process starts again. The kid sneezes on it mid blow. All the kids touch the cake decorations. Licked, sticky fingers all over it. 


Scenario 1.

Party host: 'Here is your piece of cake, have two pieces.'

What I hear: 'Here is you piece of germ warfare. Have two slabs and make yourself really ill, for a really long time, resulting in possible death.'

Scenario 2

Party Host: 'I made it myself, it's really moist,'

My thoughts. 'Yes, it's moist with spittle and snot and it might result in possible death,'

Scenario 3

Party Host: 'Little Johnny Picky Nose helped me make it. Didn't you Johnny?  You MUST try it.'

My thoughts (as I look at Johnny with half his fist firmly nestled in one nostril): 'Yes. Johnny is called Johnny Picky Nose for a reason. Johnny picks his nose. There are now bits of Johnny not only ON the cake but IN the cake and if I eat it it will result in possible death.'

Every time we go to a kids birthday party now, I can't look at my husband when the candles are being blown out because he pulls faces with a spitty looking face and makes a big deal of seeing if I want cake and it makes me laugh too much. The git.

Have a rubbishy soundbite of what it all might sound like.