Charlotte's Heart Transplant

Firstly, I'm back! It's been years! Unfortunately, my website domain expired and I couldn't remember how I bought it in the first place! Then I bought a new domain so you can find me at www.charlotteshearttransplant.co.uk a bit more concise than the previous site. But it looks months for this domain to work properly. Anyhoo, I'm back and big things have happened since I last wrote a post at 5 years post transplant, I'm now 8 years post transplant. Having a baby post transplant This is a post that has been in the pipeline for several years. It all started when I was 19 and diagnosed with Restrictive Cardiomyopathy, I had a conversation with a cardiologist following a CT scan who said 'I don't know if it's something you've thought about but you need to make sure you don't get pregnant, your heart isn't strong enough and it could kill you'. That was the first time I realised that we probably wouldn't just pop out a baby one day, but I wa...

The blog is back. It might be a one off, I might stay consistent, who knows. As I often say 'life has a plan but we'll never know what it is'. I'm not quite 5 years post transplant, my anniversary is 27th Feb 2023 but the countdown to this anniversary has been going on for months now. Every year feels like a big deal but this anniversary feels like a huge deal and I'm not fully sure why. A lot has happened since I was 21 and put on that transplant waiting list, in fact, looking back is like watching a film about a girl I kind of know but not very well. I have a scar down the centre of my chest to remind me of what I've been through, but even that has faded to a point where I don't even notice it.  So my emotions have been quite mixed recently as I reflect over the last 5 years. I've gained 4 nieces and nephews. Lost a bunny, adopted a bunny. Gained a husband, relocated. Started a career that I love. I've met hundreds of new people, shared my story, l...

My Near Death Experience - Post Op Delirium and PTSD Hello everyone, not written on here in a while! I was watching 'The Fall' recently and there's a part in it where he has a 'near death experience' and he's in a tunnel with his late mother shouting him and then his living daughter at the other end shouting him. I've shared before that I suffered with post surgical delirium and hallucinations but I've never really gone into much detail. This is because it was upsetting at the time for those around me to see me so distressed but also because I don't often look to the past. But that part of the programme really reminded me of my experience and I wanted to share in the hope that it may help. So some part of ICU I remember, although it was very tunnel vision as I couldn't move. So I remember my parents and Ciaran seeing me the first time I was woken up after 6 days and they told me what day it was etc. But after that the line between reality and fic...

Hi everyone, Me again! I found this blog post that I wrote a while ago now and obviously forgot about it and never shared it! It's very relevant to the current Covid-19 pandemic. It explains why transplantees and immunosuppressed people are more at risk of infections and why it would be so serious if a transplant recipient were to catch coronavirus. It's obviously a worrying time for everyone at the minute, but every day transplantees are at risk of picking up infections and we don't spend our life in fear. So please read my tips, stay safe and check in on the people you love and make sure they're okay! I've been thinking about what you might want to read about life as a transplantee and I recently became a member of a new transplant Facebook page. This page is from people all over the world, not just UK and it's been really interesting listening to what people are worried about, what their doctors have told them etc. I wrote a previous post about transpl...

Hi everyone!  It's a long time since I've updated my blog, and I don't know why but I felt inspired to write today! I can't update you on my entire life in one blog post so I'm going to post a few blog entries about 'Getting Back to Normal'. I am back at work, so I thought I'd share what it's like getting back into the work force, for anyone who's nearly at that point, or is just starting their transplant journey and they aren't keen on medical retirement, especially if you're young like me! Some people do choose to take medical retirement after transplant and say it's because of the risk of being around people. I think it depends on your age, when you're older your immune system is naturally weaker anyway, and older people are more prone to infections post transplant than young transplantees. I can imagine as well for people who have worked their whole lives and have then had such a traumatic event, it must be nice to be...

29.10.18 I get butterflies just writing this title for my blog this week! Following on from my last post about mental health and transplant, one of the main things I have struggled with is that a complete stranger gave me the most amazing gift I will ever receive and I will never be able to thank them or meet them. The most frequent question I have had since my transplant is "do you know anything about your donor". The minute I woke up from my operation I thought of my donor and their family. It didn't even cross my mind when I got my call because it just hadn't dawned on me that I was even in the hospital about to have my transplant! But I remember being on the ward and just sobbing to Ciaran. It wasn't guilt that I felt, it was just sheer sadness. I felt as if someone I knew had passed away. It's very hard to know that someone that was such a wonderful person (because they decided they wanted their organs to be donated after death) has passed away. I...

 11.10.18 Hello everyone! I can only apologise for not being as active on my blog as I was but my life is busy with non-transplant things now! And I like to keep my blog just for transplant updates really rather than my life story! **I do not recommend this post if you have not yet had your transplant as it may frighten you to read about or make you think of things that may upset you that you haven't yet even thought of!** It was mental health awareness day yesterday and I thought it would be fitting to write about the emotional side of transplant, and some of the things myself and others have struggled with. I think it will be best to start with a list to summarise some of the issues people can struggle with (not everyone struggles with these things and some obviously struggle more than others): Guilt, from someone dying and you essentially celebrate that death because your wait and your illness is over Sadness that someone has passed away Trauma/PTSD from the surge...

21/08/2018 Hello all, I'm so glad that so many people contacted me and said they really enjoyed my last post about my anti-rejection drugs, I'm always unsure if people like reading my more medical blogs as it can be complicated! But it is important to me that my readers know all the details of transplant life, a lot of people I know find that the general consensus is that once you've had your op you're cured when in fact I will always be disadvantaged compared to the normal person (but I do think if you see yourself as an ill person then you'll always be ill, so I just get on with life as normally as I can). I can't believe I'm almost at my 6 month anniversary already! Which means I've been home for around 5 months, it's absolutely crazy how fast it's gone and yet not a single day goes by that I don't think about the fact I've had a heart transplant. What have I been doing? Not a lot. I'm really struggling with boredom if I...

What is rejection? After transplant, one of the words that gets thrown around a lot and causes a lot of panic is 'rejection'. Because your new organ is in fact not yours the body sees it as a 'foreign object'. The antigens on the new organ are different to what the body recognises and this is why during transplant assessment they test your blood for your personal antigens and they try and match them as closely as they can to your donor organ, the closer they are the lower the risk of rejection. So you're not just matched based on blood type, it's a lot more complex than that. However, no matter how close the match, rejection of some scale is almost certain to happen in the first 6 months after transplant, although it is usually treatable (or often doesn't even need treatment) because it is caught early through frequent biopsies. Biopsies test for rejection at a cellular level before damage is done to the organ, there are 4 levels used to describe rejecti...

08.07.2018 I thought I would catch you all up on where I'm up to in my recovery! I am now 4 months post-op. At 3 months I was allowed to drive again because the breastbone is usually healed after that time, and it can then take up to 6 months for the muscles to stitch back together. Pain level Even though I was allowed to lift things like shopping bags after three months I was still quite weary as my chest was still quite sore. At this moment I have no chest pain at all. I can't quite pinpoint when it stopped hurting I just know that it doesn't hurt anymore! Which is great. It means I can now sleep on my stomach again! This might not seem like a big deal but I slept on my back for three months, propped up with pillows for the first couple because it hurt to lay flat. I gradually started sleeping on my side for parts of the night but my chest would be sore every morning when I woke up. So, I was only taking paracetemol first thing in the morning when I woke because it...

19.06.2018 Before you leave the hospital after transplant, the physio team refer you to your nearest cardiac rehab centre. Mine is Northwich infirmary which is great because it's actually walkable from my house! It took about 8 weeks for my referal which worked out fine because it meant I had a couple of months to recover and by the time I went to my first appointment I barely had any pain and my bone should have been healed because I was 3 months post op. My first appointment was an assessment, so they went through my medication (her little box for meds was no where near big enough!), took my pulse and blood pressure and they had my echo scan from the hospital too so they can work out from my heart function what my heart rate should be when I exercise. When you have a transplant they cut through the nerve from your brain to your heart, so my brain can't tell my heart to speed up and slow down. Therefore my resting heart rate is about 111bpm, and I also can't judge...

Trip to Ireland! 27.04.18 Whilst I was on the ward, I got the all clear from my consultant to fly to Ireland for my dad's wedding! He's getting married in Ireland so I wasn't sure if I'd be able to go, or if I'd have to get the ferry, but I was told I was fine to fly!  I had to be really organised with my pills, I had a set in my suitcase as well as my hand luggage. I thought I'd need a note to take all my pills in my hand luggage but no one at the airport even questioned them, but I brought my prescription list just in case! I had to book travel insurance in case I was ill while I was away but also because I had a biopsy the Monday before I went away, I wanted to make sure that if I was admitted and had to cancel my flights and things that I'd be covered. The Heart Transplant Facebook group that I'm on is really good for recommendations on travel insurance. The company that was suggested was All Clear but they wouldn't cover me after I fill...