Amazing lungs and erm... Not so great everywhere else?!

Monday, July 31, 2017

Bloody hell, this is a bit of an epic writing session, still I'm determined and have Harry Potter on the tv and a cup of tea on hand so I will persevere! 

So, second part of the blog is health related. It just feels like a lots been going on and as I said in my last blog 
read it here,  I wanted to explain really why I've been struggling a bit mentally when it feels like it's been one thing after another. I do try to not let these things disrupt my life but every now and then it just gets too much and the big black cloud tries to engulf me.

As you may remember I fractured my foot for the 5th time in 2 years, in February. I had to use my crutches and air boot for some of my big Florida holiday which was a bit gutting even though wee still had an amazing time. Then a couple of months ago I ended up in A&E twice in one week because my foot was swollen, making clicking noises and extremeley painful. I was convinced it was broken. I saw a physio and he diagnosed me with metatarsalgia, basically because of the amount of breaks I've had the nerves between my metarsals are being pinched together and causes quite a lot of pain. After a good few weeks it finally seems to be under control but can flare up so needs to be kept an eye on. 

I then had an appointment to get custom inner soles to try and put less pressure on my toes so hopefully I have less pain. So I got those and they do seem to be helping even though I'm a bit gutted that I can only wear trainers really as they are about the only things I can walk in. 😒 they make me feel a bit like an old lady too.....

My physio has also given me some back exercises, they are great long term but can often be very uncomfortable to perform and difficult to fit into the day. This sounds a bit pathetic and I realise how good I have it compared to a lot of cf patients in particular but I still have drugs to take, blood sugar checks, insulin injections 4 times a day, treating any hypos, coping with pain and fatigue, exercise to lose a little weight and keep my lungs working optimally, a as well as work and general having a life. It's another thing that's not very nice to do but needs fitting in and sometimes it feels draining as though the hospital/health stuff is stealing too much of my time. Similarly it is just incredibly hard to motivate if I'm tired or in pain.

However there is also an: Excellent health news alert! I went to clinic on Monday last week and something incredible happened. You may remember my bucket list post. I'll jog your memory, number 33.....

Which in visual terms looks a lot like this.....

I honestly nearly cried when I came out of the lung function room. I feel so grateful. This is the highest my lung function has ever ever been. I realise I am so lucky to have this as so many transplant and cf patients don't.

Aside from this amazing news, all was good from a lungs  point of view. I went to clinic early as I was feeling little under the weather and as I suspected my iron levels are low again so I need another infusion. Also a bone scan to check those baby's out too. 

I also had an appointment on Friday. You may not know that I have liver disease, part and parcel of Cf as well as a number of gastro issues. My liver and spleen are enlarged and have cirrhosis. Thankfully this has never really caused any problems and usually I go to clinic say hello and leave. However this time I hadn't been seen for a while as my consultant changed hospitals and it took a while to transfer over. Anyway, due to a bit of my stomach etc being a bit sluggish, and the fact that my iron keeps dropping (can sometimes be due to internal bleeding) added to the fact that due to immunosuppression and CF I'm more prone to certain cancers, it was agreed that I should have some check ups. I'm booked in for an endoscopy, a colonoscopy and an ultrasound. 
Ultrasound, fine. Endoscopy I've had before and coped but the colonoscopy has freaked me out completely. The Drs were so nice and I know it's for my own safety but the whole thing left me completely reeling. I think because I expected to be in and out, see you in six months. The mention of cancer however unlikely, and the barrage of let's face it fairly intrusive and embarrassing tests has really shaken me. 
Not helped by the fact that CF patients need 3x the amount of prep before a colonoscopy. That's 5 days low fibre and 4 days clear fluid only with I think 3 litres of laxatives on those 4 days. Even the dr said I'd hate him by the end of it. 

Anyway I've chatted to a lot of friends and got some vlogs on people's experiences and feel a bit better about it all now. It's still incredibly daunting, both procedure and results wise, and let's face it who wants a camera shoved up their arse? But I'm a bit more calm now and thinking practically about how I'll deal with it all. 

If any of you would like a bit of a blog about the whole process I'd be ok with that. I'm not talking coming into the procedure or too much toilet talk but maybe a video on the prep drinks and how I get on without food? Then a blog about how I've found it all?  Let me know. 

Anyway that's where I'm at. Lots of cake orders, a new job (more next time) and at least 4 more appointments and 9 days of restricted diet/ fasting/ not being able to leave the loo. Plus recovery times from all of it. It really pulls me down sometimes but it sure as hell won't beat me. 

Next post, in fact the next few will be more happy lists. To be frank I need the reminders of happy things and I'm going to be an overly emotional, hangry mess in the next few weeks so I'm hoping not to inflic that on you! 

Thanks for reading xxx

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  1. Cor, the prep for the colonoscopy sounds really grim. I hope the procedure goes okay. And a post or video about the process would be really interesting! I'll wait until after I've eaten before watching though. Can't wait to hear about your new job and other news too! Thanks so much for keeping this blog going over the years. It hadn't occurred to me that even after getting new lungs, you would still have ongoing complications from cf. Have you ever thought about building more a youtube presence? I'm sure there are lots of educational videos about cf/life after transplant you could make. If you ever decide to do a meetup with your followers, I'd love to come if I'm back in England!

    1. It does a bit! Aw thank you lovely I've calmed down about it a little but still dreading it! If I make a video nothing too gross I promise!
      I've thought about doing a bit more YouTube a few times but wasn't sure I'd be any good or that anyone would watch! Might give it a try though see if I enjoy it.
      Ha! I think you'd be the only one to turn up for a meet up but love you suggested it.where do you live now? Xxx

    2. I just realised I never replied to this! I'm living in Ireland but I'm actually back in England for January and February. I know I'm just some random commenter on the internet, but if I can help at all during this time, please do say. It's horribly unfair what's happening to you.