4 Months Post Op

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 just helped get me going but I haven't been taking any at all for about a month now. But now I can sleep on my stomach, and I even had a back massage recently which I've wanted for ages, because I get a really sore back, but I couldn't lay on my front. So that was exciting!

As you know I started cardiac rehab a few weeks ago and I love it! Since starting it I have found that my fitness and strength has definitely improved. I think the pain in my chest probably stopped hurting around a week after my first cardiac rehab session and they did tell me in the hospital that the more you use your chest muscles the quicker they'll heal, so that makes sense. I can now do a lot more because I can reach up for things, I can carry things, go shopping and do more arm workouts (which after four months of not using my arms is really needed as I have no muscles!)

Center Parcs Trip

I asked in clinic recently about going away on holiday because Ciaran is only really allowed time off work during June but they said it'll be at least 6 months to a year before I'm allowed abroad (Ireland was different for the wedding because they have patients at Wythenshawe who live in Ireland and fly over for treatment). The main three risks for going abroad are; infection from the water or upset stomach which then can prevent you from absorbing your drugs, sickness from food which again effects your absorption of drugs and surface germs, so they are all preventable but I'm just too high risk at the moment. Also, I am still only 4 months post op so there is a chance I could have problems and they wouldn't want me to be miles away from the hospital.

So me and Ciaran decided to book a week away at Center Parcs. We had the most amazing week away! We hired bikes which I was so excited for because I love cycling and I've not been able to do it for so long, we even went kayaking! I thought of my donor and their family the whole time I was away, we chatted about them while we were sat in the sun waiting to kayak. It still really upsets me to think of them, that while I'm celebrating what I can do after 4 months, a family somewhere will still be in pain about losing their loved one. But at the same time, it's a nice feeling to know that I know I'm a good person and I won't waste the gift I've been given or risk harming it in any way. Which is why I always ask the hospital before I do things and I listen to everything they say and do as I'm told!

It's obviously been extremely hot in England at the minute, it was 27 degrees while we were away so I was quite tired on occasion, but probably only in the middle of the week, I had a lie down before dinner. The rest of the time I didn't have a single nap and we were up at 9am, doing activities, walking lots and then going to bed about 11. We went swimming one of the days which was a very weird feeling, it hurt my chest a bit but when I swam properly with my legs it was alright, it was just when I moved the water with my arms when I was stood up.

Gym and Hospital Trips

I've started going to the gym, I've been given an 'at home' plan from cardiac rehab which is a list of things to do at home or at the gym. I personally can't exercise at home and I've found a local gym where I can go for free three times a week! So I just do my plan but the trainer is there to help out with equipment and it just gives me more confidence than going on my own!

I have had my 7th biopsy now, I had 1R rejection again which sucks. It is harmless, it just means that there is a tiny amount of rejection but no damage to the cells (it's literally only detected on a cellular level). I am now on 7.5mg of prednisolone (steroids), some people stay on around 5mg and some people get taken off it after a while (I hope I come off it!) but if I am taken off they have to drop the dose really slowly. Whenever I lower my steroid dose it completely wipes me out for a couple of days, when you take steroids your body stops making it so when you lower your dose you don't have enough in your body then.

I stopped taking fluconazole while I was in Center Parcs (an antifungal), fluconazole increases the amount of prograf in your blood (anitrejection drug) so when I came off it I had to send my bloods in the post to the hospital and then they said I need to increase my prograf. I didn't feel great for about a week after increasing my prograf, I send my bloods again tomorrow so hopefully, they don't need to increase it again!

While I was in CTCCU they kept a diary of my progress and my family wrote in it as well telling me what they'd been up to and who had been to visit each day. So I got a letter in the post the other day asking if I wanted to have it back, you don't have to and they will store it for up to 2 years and then put it on your medical record. But they've found that it really helps with the psychological recovery after a heart transplant, it also has photos in from when I was in ICU because you're not allowed to take them due to there being other patients in with you (I have a photo though already, oops). So I'm excited to go and hopefully meet some of the nurses that looked after me, I went the other week with a card but you're not allowed into CTCCU, it's extremely locked down because of infection control, even when I was in there my family were only allowed 2 in at a time so it's understandable that they can't just have people wandering around.

My next blog post will include my photos from ICU and will be about my visit back to CTCCU!