Life is what you make it

I came home (properly) on Wednesday. So much has happened over the past 2mths, some of it somewhat unbelievable. Since being home I haven't really done so much, adjusting to life with a PEG tube is taking time. There's alot of maintenance at the moment because it's still new but I'm already feeling the benefits of improved nutrition. It's funny, you don't realise how much your lacking in the essential things, like that, until they're given back to you. I hadn't realised just how bad poor nutrition was making me feel.
Yesterday I went to the funeral of another lung transplant patient. He died suddenly on the ward last week, it was somewhat unexpected. He was transplanted around the sametime as me and lived not too far away. The funeral was of course upsetting, for me personally it got me thinking about transplant, life, death and everything inbetween.
A comment recently got me thinking too. Someone said "you must be proud of how far you've come". Am I? Not really, what do I have to be proud about? I've just doing the best I can with what I have which is what anyone would do, the fact is I have a whole lot more now to make the best of. I'm not proud, I'm just doing or have done what anyone else in my situation would have because really what options do I have? Realistically I can't stamp my foot and pout my lips and say 'no I'm not having that bronchoscopy and I won't take that medication'. The transplant was do or die for me. It isn't that way for everyone, some people have a choice on if transplant is right for them, for me, in my mind there was no other option, the alternative to transplant, well to me there wasn't one. I was not ready to die, I was determined I wasn't going to die of my lung disease and I was too stubborn to sit back and let it kill me. Maybe it's my stubborn streak that at times keeps me going, I don't know but I do know what are sometimes considered negative aspects of people's personalities have helped me along the way and kept me grounded and realistic. I don't have unrealistic expectations of transplant. I never wanted to run marathons or jump out of planes, don't get me wrong the lung function to be able to do that would be nice but I didn't have a transplant to become an athlete or an adrenaline junky. I had one to save my life and that's just what it's done :-)

are you ok?

I've had so many people ask recently how I'm doing and besides "ok I got a port put in today and I'm to have a peg soon" I haven't really been able to explain how I'm actually doing. I guess the best part of all of what I'm about to say is I'm doing better than I was 5wks ago. Before I went into hospital I didn't even have the breath to stand up at the sink for long enough to brush my teeth and wash my face, the day I got admitted mum had to put a stool in front of the sink for me. I was bad, I just hadn't realised how bad.
Now I'm going to try and explain what's going on, as best I can anyway. A few weeks ago I had a lung biopsy to confirm if it was rejection, I didn't think it could be anything else but the biopsy was negative, NO rejection. The biopsy (and CT scans) showed inflammation and scarring or fibrosis. Basically something has injured my lungs (we aren't 100% sure what and we may never know now) and it caused inflammation which in turn caused permanent scarring. This isn't going to go away, nothing can be done for fibrosis. The hope is now that whatever caused the injury was acute and it isn't something that is going to continue injuring the lungs. The problem I'm left with is my lungs are once again scarred, they're never going to be normal, scarring doesn't go away. All I can do is build up my exercise tolerance as much as possible to maximise what I can do with them. I'm still on oxygen, I don't know when or if I'll come off it.
I guess what I'm focusing on through all this is this isn't ideal, far from it but it's better than the situation I was in pre transplant. I feel better than I did pre transplant, I have my days but everyone does, my life has already been extended as far as I'm concerned it's already been proved that transplant was the right decision. I don't know what my life is going to be like from here on out but I don't really care because I'm alive and that's all that really matters...

Rant

I'm feeling the need to rant, not a negative rant though. Last night one of the nurses that's looked after me quite alot over the last 6mths, asked, well said "I bet you must have regretted having a transplant at some point?" This is a subject I feel so strongly about. I have had my fair share of problems lately some completely new issues that I know nothing about and at times I've not known how to deal with them. I have had to put my trust fully into the transplant team, something I found at first extremely hard to do given the trouble I've had with medical teams in the past. But anyway back to the original statement, I answered without any doubt in my mind 'not for a second'. It would be so easy for me to become like that, I've seen it happen to other patients on the ward and hell I've had my problems since transplant some days I have felt like giving up, like I’m fighting a never ending battle, things are not perfect for me right now and we know now they maybe not be, that's another blog altogether (!) But I'm 100% sure I did the right thing with going through with my transplant. It's the best thing that's ever happened to me and I feel so lucky and so privileged to have been given my gift, my second chance at life. I have friends that have been waiting years and I've also lost friends waiting for lungs and I know that I could easily have been one of them. That sometimes makes me question why I've been so lucky but I'm not opening that can of worms!
Someone else also commented saying something along the lines of "oh I thought a transplant would make you so much better". Well it has! It was never meant to be THE cure, I knew that when I signed the consent forms, I never went into transplant believing that it would make my life perfect that would be silly. Even with the problems I'm having, I don't need a ventilator to keep me alive or even half as much oxygen as I did pre transplant, I don't feel constantly ill and like my next breath could be my last, that's the best feeling of all and to top it off I'm not dying, I'm living and now I have the potential to go on living for many years. Something that I've never had before, the potential to live, not die. Just a chance, that’s all I wanted and that’s what I’ve been given.
So the bottom line is, yes there's problems and I expected them they're just new challenges I have to face. But this is my new life with new lungs and I appreciate every second of it.

Hmm well my aim of being in and out within a few days? That went a bit pear shaped! I'm still here. Quite alot has had actually. My 'small Pneumothorax (lung collapse)' I mentioned in my previous post decided to get a little bit bigger as a result it was decided I needed a chest drain. I guess I should have seen it coming really but I just believed the right lung had done with its dramatic behaviour and would just reinflate. Wishful thinking. So for the past week I've had the privilege of lugging round what is basically a bucket attached to my chest. Not so much fun. And at times pretty painful.
My veins have well and truly given in, access is near impossible luckily one of the transplant doctors managed to get an IV in half way and rescued it by threading in a long line up it which I'm clinging onto for dear life! I'm hopefully getting a port put in at some point though which will make life easier.
Most of my transplant drugs have been changed to alternatives so I'm now adjusting to those changes they haven't been easy on me and I've had alot of sickness whilst the team get the levels right. I have a bronchoscopy and biopsy scheduled for Friday, I'm hoping this one will go ahead and give us some answers. I think that's it for now.

Back in

Well I've been feeling a bit crappy for a couple of weeks. I started to notice a gradual dip in my exercise tollerance, an increase in breathlessness and lack of appetitte plus my cheeks were constantly glowing! Related or not I don't know!
I had a CT scan last week and I'm quite glad it came along on a day I was feeling really quite bad as it reflected how I was feeling in the following clinic appointment when I got the results. It showed I had a small pneumothorax (collapsed lung) in my pesky right lung, it seems to be the mischievous one! And 'scraggy' white patches which looked like inflammation over both lungs. My consultant said he'd seen alot of this before and although there was more than he'd have liked to seen he wasn't too worried but did want to get to the bottom of what they were, for sure, asap. A bronchoscopy and biopsy were planned for the following Thursday, just 2 days later. Wednesday saw me lounging in pjs all day with no energy or breath to do anything, I was back on oxygen and I couldn't even stand up long enough at the sink to wash. I had a few teary moments, out of frustration, feeling helpless and the worry that this is just how things were going to be, that this was it. Everything was an effort and poor mum was waiting on me hand and foot, I felt so guilty. I turned up for the biopsy yesterday and my consultant (different one to Tuesday) was weary. I admit I was worried about how I'd cope with the bronchoscopy as I was feeling really quite bad but I wanted it done so they could get to the bottom of it and I could get back to feeling better. After a chat and a check of my oxygen levels it was decided I wasn't well enough and it was cancelled. They sorted a bed out on the ward and I was sent up. I'm being treated for a bout of rejection, my second bout now (I had a bout during recent pneumonia) so they're looking at changing around my antirejection medication to prevent further bouts. Rejection is common during the first year of transplant, its takes a while for you to adjust to the treatment. But I find it so worrying, rejection brings back all the memories of my old lungs and my struggles I had with them, the struggles I don't want to be reminded of.
Anyway now the treatment has started I'm already starting to feel a bit brighter and hoping not to be in too long.