End Of Life Plans?

I had clinic Wednesday, I assumed it was just going to be a typical day 7 of IV's checkup, I'd do lung function, get weighed, see the doctor, blood test, collect my next weeks worth of drugs then go home. How wrong was I?!

Basically it started with me not being able to do lung function due to my severe chest pain, I had 1 go of each test but it caused so much pain and they were worried I may cough up more blood, so they decided to stop it. I then saw the dietician who was pleased my weight had increased by 0.5kgs but it was still down 1.6kgs since I was weighed at Harefield on my fist transplant assessment in November, so obviously this isn't ideal and she has given me some advice and tips on how to increase my weight, to be honest it's nothing that I'm not already doing, I think my lungs are just using up so much energy to breathe now, every calorie is going towards that. My heart rate was also 155bpm resting, so it proves my heart is working super hard to cope with my rubbish breathing.

Then my CF consultant came in, I'd told the physio's that I had coughed up blood and just assumed it had been passed onto my doctor, but it hadn't so I told her about that and she arranged for me to have a CT scan where I will have due put in my veins so show my blood vessels in my lungs, if there are any that aren't right (which could be causing the bleeds) I will have to have a procedure to sort this, although I don't think it will come to that because this was my first proper lung bleed since 2009 I have had tiny little amounts during this time and the odd streaks of blood in my phlegm, so I don't think I will need the procedure but they want to check anyway.

Secondly, I was in what I can only describe as serious, serious amounts of pain, I was rocking back and forth in my chair and struggling to talk, needing to take a breath after each word, but then being in pain trying to take the breath in. She then said to me she could see I was in a lot of distress and wanted me to start a morphine tablet, her words were 'I know when morphine is mentioned patients usually think, oh my god I'm going to die, but she said she's had patients on it for a few years' to me I thought, thank god, because thin amount of pain is starting to get extremely difficult to cope with and I think having probably the strongest pain killer you can have should help to ease this horror! This tablet is a slow release one, which works over 12 hours but then I should carry on with my other pain killers throughout the rest of the day. She has started me on a lower dose with a view to increase if it didn't give me any side effects, other than making me very tired when I have all the different pain killers in me, I'm not having any bad side effects so I assume it will be increasd.

Josh then asked if I still needed to come to my annual review which is in February, she said no it would just exhaust me and they don't need it, she said normally annual review is when they assess you to decide a plan of action for the next year, but she said their plan for me is just to keep me alive and hope I get my transplant.
Then the worst bit was she said we should still have the annual review meeting which is usually 6 weeks after the day of tests, she said they would use this to discuss important matters. She then asked if I'd made any plans or thoughts about my funeral, or how I would want it to be at the end. I said I had plans for our wedding, being that if I wasn't well enough to wait for transplant we would marry quickly if things were going downhill, and other than knowing I want to be cremated I hadn't given it too much thought, she said it's a good idea to think about these things because I am going downhill quite fast and I guess I never know when an infection could be my last. She also said I'd be referred to palliative care soon which is sort of end of life care, they offer support and just help with things during this difficult time. I was scared when she first said it, but then I thought if something is going to hopefully help me in anyway it's not something to be afraid of.

I was a little taken aback by all of this because although I know I'm very ill and I do worry about my future, when you hear a professional basically confirming what you think, it makes it all seem very real. She was going to contact Harefield and explain I've had a bit of bad turn and hopefully see if they can get me in any earlier, I know they are very busy at the moment so I'm not expecting anything, but anything sooner than April will only be for the best.

I'm now on 3 IV's, along with all these pain killers, I'm pretty knocked out. I've been sleeping a lot more than usual but hopefully it might all help. They said ideally they would have really wanted me to be admitted into hospital that day, but I'm very stubborn and I said please give me this one week to see if the new changes help, if not of course I will have no hesitation to go in. I also no longer need to do lung function unless I am having a good day, because seeing he numbers means nothing anymore, they want to concentrate more on my symptoms, if I feel okay, I can still do it, if not, it's not something I have to try to do.

I'm still staying very positive, thinking about my funeral and things will only help if I was to pass away, it eases the pressure off my family and Josh because I will have already explained what I want, I do have a few ideas of things anyway, but I hope it doesn't come to that :) it is best to be prepared and as I said before I am very optimistic but I am still realistic and know these things could happen, there is no guarantee I will be here next year, but there is also a chance if I get on the transplant list, I may get my lungs and this time next year be completely healthy.
I still have hope, I have amazing support and so much keeping me going. I will not give up. Anything that was said to me in clinic is to help make things easier for me and those who care about me, it doesn't mean I'm going to die next week!!
That's the way I'm looking at it :)
Thank you for reading.
xxx