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.
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.
