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.

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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.

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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



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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

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2 year wedding anniversary

On Sunday me and stu celebrated our 2 year wedding anniversary. We stayed in a lovely hotel over night in Bristol and had a nice meal together. I'm grateful for every moment I have with my hubby but special occasions like this we think back to when we got married and how close we came to losing each other. The reason I got to this anniversary was due to the kindness of a stranger and there loved ones. So with every breath I thank them and on these special occasions I always say a special thanks. Sometimes I look back over these last 2 years and they seem like a dream, almost to good to be true, did it all really happen?





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A perfect operation

So how did it all go? Well would you believe I'm back home! The morning of the op I met my surgeon registrar, he was really lovely. My notes said it was almost impossible for key hole and they would be likely to go open, it was the worst thing I wanted to hear, I was gearing myself up for a quick easy op thinking if I though it was going to be key hole enough I would almost will it to be. He assured me if he had to sit there for hours cutting through adhesions to make it so, he would. Unless my breathing deteriorated. He really understood how badly I didn't want open surgery. My anaesthetist was a lovely lady and she said although my lung function was a worry, she was more concerned with how fit I was and when I told her how hard I'd been working in the gym and swimming even since my drop she said she thought I was going to do very well! They were all obsessed with the fact I taught fitness pole dancing, thinking it was intriguing and required a heck of alot of strength and fitness. Which it does, I'm glad people are starting to realise the full implications of fling myself around a pole!

So I was first in, being the most complicated, I lay there being put to sleep playing my own little game against the anaesthetic. I went off to a blissful little sleep.

When I woke, I was calm and felt happy, I knew everything was ok. I knew the nurses were there to help me and make me comfortable and someone layed a blanket over my chest and told me it was for the pain as my lungs would be sore because they had pumped alot of air In my tummy that would be causing pressure. I usually panic when I come round but I just felt a huge sense that everything was ok.

I spent a night in st Mary's where I received alot of great care. I was in alot of pain because of this air in around my lungs and felt like they were collapsing. This was partially my fault as I hate pain meds so try to not use the Pca (morphine pump you press when you want pain relief) I'm also really allergic and had a severe eye infection after itching my eyes to much. I eventually realised I needed the pain relief and was getting myself more in a pickle when I didn't use it. I was also scaring the on call doctor with my cries of pain. I met a older cf guy called tony, he was also from harefield and had a transplant and was there for a fundo. We had a lot of laughs and talked about all sorts. I'm really glad I got to meet him and if you reading this tony, drop me a email.

I was then transferred to harefield with what was the dodgiest ambulance driver, no nurse, no pain meds and 2.5 hours of getting lost with the foulest language ever, unfortunately I got to harefield very shaken and collapsed on the way into the ward, the most embarrassing moment of my life, my legs just went, my husband caught me and the nurse all ran round panicking. I was in tears and just wanted to get up, cover my face and run to my room. Stupid legs for collapsing on me. I think that whole journey was just horrific and it drained me. We will be making a formal complaint about the driver.

So I settled In and the next morning woke up, got ready early knowing I was probably going to go home that day or the next, I didn't really need that level of care and would cope at home. Dr carby came in and said the same, he was very chuffed my op was minimal and said I could go and that was Wednesday.

Iv been chilling out going down the beach, resting making lots of soups and other puréed foods, I can't eat nearly as much, struggle to drink squash the most, it's agony. Have to eat 4-5 small meals a day and feel full at the end of the day with no need to eat anything. Now I can tell you it's a dramatic change, I love food, in fact I'm usually obsessed. So this new diets weird, It's nice as a little experiment, blending foods and tastes but I can see it is going to wear thin at points. I'm not suppose to be able to be sick and I know my surgeon didn't want me being sick, but I do find food gets stuck and then I bring up mouth fully of puréed food up over a space of an hour, it's very painful like awful intergestion, things you think would be ok aren't. Drinking liquids is really hard and I find tea the easiest as its warm and you sip it. Anything to hot or to cold is horrid and painful!

So over all, how do I feel? Well I'm nearly off pain meds now, although I'm not being stubborn any more if I need it I need it and I give in to a little oramorph. Mainly, grateful. I still don't know if my lung function is going to recover but iv got the best chance to make it happen. The surgery was beautifully smooth and I think the surgeons done a cracking job on the scars and there placement to make ab recovery easiest. I feel like all this frustration over getting the op arranged everyone came together and did there little bit of the puzzle and worked very well. What more would I ask for? I'm also chuffed to know that all my hard work on fitness has paid off and made the process much easier as the anaesthetist confirmed. That makes me really happy.

So now I'm looking forward to making maximum recovery and getting things back on track, I hopefully shouldn't need as many Ivs now as the reflux was causing lots of infections and I should have a good length of time away from admission. Fingers crossed.

I just want to leave you with something my hubby said 'whenever they open you up I think they let a little bit of sunshine out, because the weather is always good and you are my sunshine baby' I love it when he calls me sunshine baby, it just makes me feel brighter.

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Pre operative assessment for fundoplication

So once again, me and mum got in the car Friday morning bags packed and made our way up to London. I had been booked in on a last minute pre operation appointment and my operation is booked in for Monday. I instantly clammed up Friday, feeling sick and stressed. The pre op was just blood get, ECG, quick chat and bloods. The nurse said that we would only know Monday if the op is to go ahead based on what the anaesthetist decides. They said because my lung function had dropped so much over such a short amount of time they might not be happy, we had this at my consultation with my surgeon to, but my transplant consultant wants this operation done ASAP, rightly so because if its not my lung function will only continue to go down, it's not likely to go up after and most certainly won't before.

I am really nervous, some people might not understand why I'm so nervous, but when your sitting in a consultation with a surgeon and when he gets up and leaves your mum bursts into tears, your going to feel a bit scared. There's alot of ifs and buts surrounding this operation for me and I won't know what has happened until I wake up, I dnt know if it will be open surgery, if my breathing with be vastly affected, I don't now how I will recover and it all worries me. I dread waking up to find out things have gone terribly wrong, but I always seem to wake up and find out things haven't gone to plan. I guess it's enough to put anyone on edge.

I don't really feel like going into everything about the operation, I don't want to turn it over in my head and I don't want to have to explain everything to everyone, I'm just hoping for the best possible out come, I'm hoping to wake up, be transferred to harefield on the Tuesday and within a week be home and two be back to working. If anything else happens I will cross that bridge when I come to it.

So for now wish me luck, I will update when I'm up to it, which hopefully won't be long.


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