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6 Month Post Op - Including scar update!

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'm completely honest. I have so much more energy, I can get up at 6am for a hospital visit, leave at 1pm then do some food shopping, come home and make dinner and not go to bed until 10/11. However, I don't have a lot to do at the minute and I find that when I just sit in the house it wipes the energy out of me, which I think is the same for anyone! I can't work still, only because the only benefit I currently receive is income support because I'm 'not fit to work', I still don't receive any disability benefit (PIP). Once I receive that I do want to get a part time job whilst I'm studying still but for the time being I wouldn't be able to earn enough money working to support myself. Yes, our benefits system is truly broken! I am waiting for a court date to appeal the decision that I wasn't awarded any disability payment, but it's a 35-36 week wait for a hearing and I appealed in April.

So I'm going to look in to some volunteer work to keep me busy and I've joined the gym which is great! I've also started doing freelance makeup, so I've done a couple of weddings already and it's so much fun! I've been doing makeup for years but I haven't done it as a business before for strangers, it's always been on friends and family. I'm back at the gym I used to go to yearsss ago before I moved to Liverpool for uni, and they saw me on TV which is funny.

Biopsy

I have been wanting to dedicate a blog post to what a biopsy is for months but I'd like to be able to get some photos, but every time I go to clinic I'm too scared to ask! There's so many checks and questions when I go that I feel odd asking if I can take photos haha. But I promise I'll suck it up one day, so you'll have to stay tuned for that!

But my 9th biopsy was 23.08.2018, they always call the next day with the results as they have to go to the lab in the afternoon. So Lisa from clinic called (one of the transplant nurses) and they are happy with my bloods, so my kidney function and liver are both happy despite the amount of toxic drugs rushing through me. I had zero rejection this time which I was so happy about because the last few visits I've had minor rejection, so I don't have to go back in now until the end of November! Then, so long as that is okay I won't be back for another 3 months which will be my 12 month anniversary! Which is absolutely insane. I've obviously had a busy year but it's still crazy how fast it's going.

My Donor

I will be back at the hospital in the mean time but just to pick up some prescriptions and I'd like to make an appointment to find out some information about my donor and I'd like to send a letter to their family. I currently don't know anything about my donor (I'm allowed to know their gender, age and how they died but it's not something they tell you while you're in the hospital unless you ask I don't think), it's something that still really gets to me and I know it'll upset me to find out their age and how they died but I also think it's quite selfish of me to pretend there isn't a family out there that probably want to hear from me. I already have a letter written but I don't know how much to write about how amazing my life is thanks to them because they're obviously grieving the loss of someone that won't get to experience things in life, so it's currently still on my laptop unseen by the world!

Scar update! 


My scar is fading and to be honest when I have a bra on you can't even see it because of how it sits. My new issue is stretch marks, I lost 15kg roughly while I was in a coma and now I've gained about 25 back :( I'm not too concerned about the weight gain, obviously it's not fun but now my steroids have reduced I know I can slowly start to lose it hopefully! But the stretch marks are awful! Because obviously my skin shrank back when I lost weight and it's had to then stretch so rapidly!




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