Re transplant, palliative care medications

Things the last few days have been increasingly hard, I'm having some extremely hard times with my breathing, points where I feel I'm going to go Into respitory arrest and my anxiety levels have only made it much worse. I had an exercise test yesterday on 2litres of oxygen, of the 6 minute walk test I managed 3 minutes. My heart felt like it was going to explode and felt like I was going to collapse, my sats went down and my heart went up. So for walking I'm going be on 4+ litres of oxygen and resting I will remain on 2+.

Today nonnie my consultant came in, my breathing wasn't great but better then it has been. But she instantly noticed how bad it was, and said she could see the anxiety and worry in my face. I could certainly feel it. I was started on oramorph 2 days ago which has slightly helped, but as of today I'm going on to MST and also starting lorazepam all to help with the shere effort of breathing and to try and bring down my anxiety levels over it all. These medications all come under the palliative care meds. For me this is all very familiar in April of 2011 my conversations were very much the same, although I was already listed for transplant. Next week they will all discuss whether I can be re transplanted with the surgeons and the whole of the team. I think it's obvious I am on a slippery slop moving at a rate to me that is even faster than last time. We still have the hope that radiation will act as a stabiliser but I'm not willing to put all my chips in one basket and therefore feel the discussion for re transplant is very much appropriate now.

How do I feel about this all? I feel scared, I feel tired, Im praying it will all come right but again I find myself making lists of songs and poems I wish to be played at my funeral. Somewhere I know it will all come right in the end, how I'm not sure and that doesn't mean I will make it but I just know it will be ok.

Remember where there's life there's hope!


- Posted using BlogPress from my iPad

Sleepy girl

Radiation is exhausting! I feel very tired most if the time, I always thought it would be quit easy, I guess those who go through radiation are usually people with cancer and they also go through chemo so they don't really mention how bad radiation is because comparative to chemo it's a breeze to them. I have to say I hold my hat up to anyone who breezes through radiation and wish everyone an easy ride! To me it's exhausted me beyond belief and I am one tired sleepy girl. Part of my wonders whether I choose to sleep because when I am sleeping life's a little easier at the moment, my head doesn't pound, my body doesn't ache, the sickness is gone, my heart is calm and my breathing i can ignore and dream to a time when things were simpler. I guess I wonder whether I'm a little depressed, or whether it's just the treatment? I guess time will tell.

I'm missing my home now, but I know when I get back home things will be hard, it's a place that I realise more then anywhere that my lungs are so badly scarred now, because things are so much harder around your own home, there's stairs to climb, things to be done and you tend to move around alot more and then the breathlessness kicks in.

I try to not feel sorry for myself, but I am human, I can't help but sometimes think why me, why stu? I feel for him, my mum and everyone else around me. I feel like I'm a constant drain on them, in need of so much help and time. Last weekend my nan came and looked after me, that's never right, my nan is a strong amazing lady but she is getting old and deserves to be looked after now, I should be helping her. Instead all her time and effort is spent worrying about me and doing things to help me, my mum and stu.

I'm sorry to sound so down, I'm not really. I'm smiling, I'm still happy and I'm still loving life, but there are these moments, these rare moments when life is overwhelming and I'm filled with dread. I guess my blog could give you a clouded view of me sometimes, I write here when those moments come but mostly I still feel blessed and lucky. I'm lucky my family love me so much that there here to do so much for me and I guess I have to remember that must be a reflection on me some how, they must love me this much because I am a good person and a fun person. I just hope I can carry on being enough of a good, fun, loving person that they want to be round me forever and carry on making my life so amazing.


- Posted using BlogPress from my iPad

Breathless and scared

The radiation has already taken its tole, I feel weak, tired, sick, my body is exhausted and all I can do is sleep, but part of me knows that exhaustion comes from the fact I'm now very ill again. This chronic rejection is so fast, everyday I wake up and feel noticeably worse, today just moving leaves me breathless. I haven't had the puff for a shower today, or to even get changed from my pjs. I'm scared. I try not to think about it, not to worry, sometimes it seems like it all happened to quickly that it hasn't sunk in yet, then I get these moments when just walking to the bathroom feels like a mile again and I know this radiation has to kick in and fast.

A friend of mine who was also diagnosed with chronic rejection but at the moment there lungs are unchanged told me about how they asked how long they had left, I didn't think to ask this, but now I sit here and I guess I didn't need to ask, if this radiation doesn't stabilise me, not very long. If it does well, I still can't imagine with my lung function so low that that would be very long either. I know it's sounds depressing and pessimistic. I'm not trying to scare anyone, but these are the thoughts your faces when everyday things are significantly worse then the day before.

Many people have asked me about re transplant, it's not something that has been discussed in length, more slight whispers and mentions. For me, all I can say at the moment on that one is I'm devastated. I don't want to give up these lungs, they were so perfect and beautiful, they worked so well and then my immune system destroyed them, my old lungs I hated and couldn't wait to give up. These I love, they have done so much for me and I feel emotional attachment to them In A sense. I guess that's all I can say on that one as I don't even really know if it's a option.

I will leave that post there for today and leave you all with my emotional turmoil.

- Posted using BlogPress from my iPad

Radiation therapy

So I went on weekend leave and now I'm back in hospital. I have started radiation therapy for chronic rejection. Yesterday I had a consultation with my dr and it was time to ask some questions, would I gain any lung function back? Unfortunately they don't think I will, I was extremely sad at this and although I'm not sure what my lung function is due to my collapsed lung know it was 36% when I came in and I have got significantly worse. I am very breathless on any exercise, walking around the hospital is ok as it's flat but any other kind of surface change, hill or stairs I'm gasping for breath. I use 02 when walking and I'm trying to keep myself fit and strong by doing squats, push ups, weights and lots of yoga stretches. It's hard work but I won't be beaten by this and the only way I can think to over come it is to battle through and remain strong and determined as ever.

My consultant said that what we were doing was trying to crack a egg with a hammer as it all we've got. I have to say it is extremely frustrating, my reply was 'but I did everything I could, I did everything right' you wonder why you? What did you do wrong? But the answer is nothing, it's one of those things and sometimes
no matter how hard you try luck just isn't on your side? It's a hard concept to get your head round because in so many ways I still feel like the luckiest girl in the world. Some where its like good luck and bad luck are fighting to get to me, one day one wins and I receive the greatest gift on earth, life, the next bad luck prevailed and gave me chronic rejection? I just don't know, it's the strange thoughts in my head that try to make sense out of life.

So once again, it's time to give up work and to concentrate on stabilising, hopefully once I'm stable I can go back or we will look at other options. I have received alot of support and I thank you all. Hoping my next blog will be some better news.

- Posted using BlogPress from my iPad

National transplant week

I know for those of you out there waiting for transplant, or perhaps considering being listed for one my previous post may have been some what scary. I'm not going to lie, it is scary, but iv always been an honest blogger, someone who shares the highs and the lows, because surely without the lowest of moments we cannot see how high the next peak is? Also I believe the truth however scary it may be can only leave you informed and ready right? Ad I hope those of you who read my blog are prepared for every truth, otherwise you may be on the wrong page.

So where am I going with this, well it's national transplant week, this week also marks my transplant anniversary. 2 years ago, I was dying, kept alive on the most invasive horrendous machines, my call came in what was the last hour of my life for sure. Thanks to the generosity, kindness and courage of a family I do not know and person I will never meet. This week I will mourn my donor, I will celebrate them, I will be thankful for every little precious moment they have allowed me and I will pray for there family because I know they lost there loved one this week 2 years ago. I do this every day but this week I'm not going to shut up about how grateful and lucky I am and how I believe giving the gift of life is the best gift you can give.

So although for me this time is hard at the moment with chronic rejection, my lung collapse and a chest infection, I want you all remember how amazing these last 2 years have been for me, how I have achieved to me things I never thought possible e.g cycling 180 miles, raising lots of money for charity, meeting new people, going on my honey moon, sharing a 1st & a 2nd wedding anniversary with my husband, reaching 23, working at next. Some of these things are so simple, so normal, but to me they were like a dream elusive and unreal, until I went out and I did them. I did them because of my donor and I will carry on doing and achieving to me what were impossible dreams and something's that are even to big for me to dream.

So please think about giving someone the gift of life, think about it, talk about, do something about it. Sign up today.

https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/consent.asp



- Posted using BlogPress from my iPad

Lung collapsed, chronic rejection, radiation therapy

I haven't done a blog recently as a lot has been going on, so much that I wanted to wait until I had some answers. I still haven't got all the answers, well definite ones. So here it is.

Ever since my fundoplication, my lung function continued to drop and I felt more and more breathless, have more time off work and generally struggling.

I decided to get a check up at harefield and st Mary's as I was having problems with eating to.

My st Mary went ok.

Unfortunately, harefield didn't. Very out of breath in clinic and a lung function then of only 36% I was in for a bronch next day.

The bronch didn't go well, I woke up In incredible amounts of pain on high litres of oxygen and gasping for breath.

It wasn't until later that afternoon when I was sent for X-ray did we find out why, the nurse came in and announced the surgeon was here to fit a chest drain, I said what? And that was how I was told they had collapsed my lung. This is a small possibility during bronchoscopy when they take a biopsy and due to my continuing decline they decided it was appropriate to take a large biopsy.

The surgeon came in and described he would fit a drain and that should instantly make me feel better.

It was one of the most horrific sounding things iv ever had done, there was no pain, the surgeon made sure of that. But the sounds we horrific, the pushing pulling and general discomfort and feelings of suffocation were horrible. But I didn't cry once, I stared my dad in the face as he held my hand and stayed strong. I didn't want to upset him.

Since then my drain has been removed as my lung had come up, unfortunately not all the way and the bronch didn't come up with any conclusive results. Also the collapse gave me a nasty chest infection making me much worse.

So at the moment, I'm stuck on oxygen, very breathless when I walk and struggling to do stairs and exercise but preserving as its will help my lung come up.

So we get back to what's wrong with my lungs in the first place, well, it looks like I have chronic rejection although its not full confirmed, but I am starting radiation therapy and hopefully this will get me back to pre fundoplication lung function of about 45-50% if not it will stabilises me and we will have to look at my options from there. I'm also in talks with the surgeons about have my lung surgically restuck, but hopeful it will come up on its own.

So things have been really tough and how I feel about it all? Well I'm obviously very upset, I'm upset things have got this bad so quickly and I'm back to a very scary place of limbo, not knowing what the future will be. Can I say that you ever truly leave that place, where you think maybe you can see a future, that you can stop worrying that death is waiting around every corner, I think I was there. Either way, I'm loving, living and still breathing and that's what's important and I thank my donor every day for that gift.

Also here's a link from the week before I came in, of me on daybreak for cf week promoting organ donation and raising awareness of cf. Im very proud of this as I was extremely breathless and still managed to reliever my message, which is transplant saves lives and is a huge gift that I am forever grateful for.

http://www.itv.com/daybreak/health/cystic-fibrosis-transplants/#.Ucisoe4cHLY.facebook

- Posted using BlogPress from my iPad