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 surgery itself
- Emotional issues from drugs, especially steroids
- Insecurities about your body changes, weight changes, scarring, hair loss etc
- Helplessness from being ill and losing your life/ things you can't do anymore, this doesn't immediately return after surgery
- The thought that you may die soon
- You're then in the hospital for at least a month which can be lonely, depressing, others wait in the hospital for their transplant so could have lived at the hospital for months or even year
The list could go on, as you can imagine there are several challenges of being a transplantee! I will go through in order things that I've personally struggled with.
Diagnosis
It was obviously upsetting when I was originally diagnosed, it's not nice to learn that you're ill and then it's incredibly scary to be introduced to the world of transplant, the complete unknown, and that's when you first read the word 'death'. 'Life expectancy', risks of surgery is 'death', complications from anti rejections is 'death', cardiomyopathy may lead to 'death', it's not fun!
As scary as it was, I felt incredibly lucky to even have transplant as an option, when Dr Todd (my cardiologist) said "there's nothing we can do for you Charlotte... except a heart transplant," I was just happy that his sentence didn't end at 'there's nothing we can do'. The thought that I'd die never really occurred to me, I never realised how ill I was, even when I was told how quickly I needed a transplant. Maybe I blocked it out, or maybe I just had unconditional faith in my doctors and that the universe would look after me. I broke down a few times at home at the thought that I wouldn't become an old lady or live a long life with Ciaran, Google says the average life expectancy for a heart transplantee is 12.5 years, that took me to 32. That's scary.
Being ill
I struggled a lot with the fact that I was quite quickly housebound. I went out to visit people but I couldn't go and do my food shopping, go to uni, go to work. I was stuck in my house a lot of the time, I'd be too exhausted to even have a shower. I stopped wearing makeup because I couldn't get up the stairs or have the energy to put it on, unless I went out and then I wouldn't leave the house for a couple of days after while I recovered! A lot of people that know me will have no idea how ill I was, I'd get dressed up and put on a smile as always, but I cancelled on a lot of things and wouldn't go to things because I wouldn't dream of leaving the house looking ill.
I was then 'disabled' and hospital became a second home, I am fluent in 'doctor'! I knew much more about my health, my stats, my ECG results than any A&E doctor that I came across. Ciaran always treated me as the Charlotte that he knew, and that was wonderful. I did, however, feel lazy and a failure that I would be home all day while he was at work and I couldn't even make the bed. Sometimes Ciaran would forget this was the case, as how does someone understand what extreme fatigue and physical pain feels like from just making the bed. This obviously added to the feeling of helplessness and I just felt useless. But we coped, Ciaran would often apologise for not understanding and he's incredibly patient, I'm very grateful for that.
I've written a whole post about my call and getting to the hospital which is obviously incredibly nerve-racking in itself but I never really thought about it. I was put to sleep without a thought in my brain about what might happen, what's the point? It's not like I can do anything about it! Again, anything that was out of my hands, I had complete faith in my doctors. And that helped.
Post-op Deliruim and Hallucinations.
Now, some people will tell you they've hallucinated whilst in hospital where they've seen lights or things flying around, this is different to 'delusional thoughts'. Delusional thoughts are when whole events happen and you believe things to be happening that aren't. I had both. I had neighbours on my ward that I knew all about their lives and would chat to them, none of this happened (I was asleep). When I woke up properly it had been two weeks since I'd been lucid and not drugged up to my eyeballs. I felt fab, I couldn't move but I didn't need to. I saw all my family, I had no pain in my chest, I was tired but no more than before and I honestly couldn't believe what had happened. When I was asleep I suffered from what they call 'postoperative delirium', I've talked briefly about what happened in my brain while I was asleep, I can't describe how awful it was. I genuinely believed I was being killed by the doctors and nurses, they were trying to kill me without anyone knowing so my family couldn't call the police (their phones wouldn't work), no one could come and see me but I knew my family were in the other room. I needed a second transplant and all sorts, it was very detailed. I was then killed eventually and I could see and hear my family mourning but I couldn't speak to them, I visited my late Granny and other people I know that have passed away and I was terrified. I also heard the doctors tell my family that because I'd had a transplant I couldn't donate my organs, that was the icing on the cake. This is in my post op report because although this was going on in my head, when I was out of a coma but sedated so I had brief moments where I was awake, I wouldn't allow nurses to give me a drink (because I thought they'd poison me) "NO only my dad" I'd say. Which I'm sure my dad loved! But that was why haha. It was very scary. This then stayed with me until I was on the ward, I'd have flashbacks, and I had bad dreams as memories of what had gone on in my head.
Pain
Once I was on the ward I then got very upset about the pain I was in. I wasn't prepared for the recovery. I thought about the operation and then being able to go running in my new life, I never thought about the in between. I was in a lot of pain, my entire body was sore and weak and heavy to carry around. I lost 20kg while I was asleep and all of the muscles in my body. As physical as this is, I had to cope with being in pain, being patient, having the mental strength to force myself to do my physio instead of just lying in bed.
My Donor
Then it hit me... 2 weeks ago when I got my call, someone died and they took their heart out and gave it to me. Despite the fact I knew nothing about my donor, I assumed they were a similar age to me as I didn't wait long and they match organs to you as closely as they can unless you're urgent and then it's a bit more lenient (they would have accepted a heart of around 45 years old for me, it's better than dying). I sobbed on the ward with Ciaran numerous times, out of frustration that I was in pain and couldn't do much about it, I wanted to go home and have a nice night sleep instead of being sick, having a temperature from an infection and being pumped full of drugs all day and night. I sobbed that life is unfair, why did that poor young person not get a chance like I did to live and survive whatever it was that happened to them. I thought of the poor family that would be mourning the loss of their child/partner/loved one, and how much I wanted to apologise for what had happened to them whilst at the same time I was overjoyed that I had had a transplant in time. It's very emotional and very confusing as to what emotion pops up.
Recovery
My recovery has been fantastic and I honestly couldn't ask for better, but it's far from the end of the journey. Then comes writing a letter to your Donor's family, what on earth do you say? When will I pluck up the courage to even ask for any details about my donor? Fear of the word 'rejection'. I am on so many toxic drugs that I will probably still not live to the average age of most people, I don't know what complications may crop up over the next however many years. Will I be able to have children? They would have a 50% chance of having my heart condition and needing a transplant. My new precious heart could fail, my body could reject my new heart, my drugs can affect the baby. I am 250 times more likely to get cancer due to my immunosuppressants, I am likely to get infections, a chest infection could put me in the hosptital. I have to be honest, I block these thoughts out as they're not productive and I can't change what may happen to me in the future, but that doesn't mean that they don't pop up on occasion.
Steroids mess with your hormones and emotions, so even when I don't think about anything, they can make you sob for no reason. I've never been a cryer but over the past few months, an advert could make me ball my eyes out. You then feel guilty and stupid for these insecurities because at the end of the day, you're alive.
'The brain controls your body, so if you want your body to get better you have to take care of your brain'
(a quote by me)
I am lucky to have such a supportive network of friends and family (and everyone knows that I don't keep my thoughts to myself). I talk about things that frighten me, I discuss my feelings and this helps a lot! My blog has also helped me massively! It is basically an online diary, I can talk about how I feel, and process things that have happened to me. And thank you so much to everyone who has been so kind to me. It's so important to discuss when you're struggling with something, not just in transplant but in anything. And if that fails, go and see someone! Nothing is too small, if it's bothering you, it's important.
Amazingly I wouldn't say I have any 'mental health issues', I have kept on top of my thoughts, I've not allowed things to linger or emotions to go unnoticed. I talk, I do things to cheer myself up, I sit and take time out to collect my thoughts and think about how I feel about things.
Thankyou for reading, I hope this will help people understand that transplant isn't just a quick cure and you go home and all is fine and dandy. And as always, be kind to one another!
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