WARNING: This blog contains photos of scars and bruises at the end.
Wednesday 4th April
I went for my first echo today since transplant! So I was at the clinic for 9am, you can't take your medicine in the morning when you go to clinic because they do your bloods and they test the level of anti rejections in your blood so they ask what time you took my medicine the night before and then once you've had bloods done you can take your morning medicines.
They were running behind with biopsies so after having my bloods done I went to echo, echos are done in the heart failure clinic, not the transplant clinic, its just in the next building. Very strange walking back into the heart failure clinic, this is where I first met Steve Shaw a year ago and he said 'we'll see you in 6 months' until he changed his mind and sent me for another exercise test.
I'm a bit nervous about having an echo because the pacing wires in my chest have been really hurting me recently so I'm worried about it hurting. I've had numerous echos before so I know the process, but I'm very excited to see my new heart! It was a student nurse that did my echo so it took about 45 minutes which was really annoying because even though it didn't hurt during, because I was lay on my side for so long the wires hurt when I straightened up! I waited for my report to take back to the transplant clinic and headed back there for about 10:30.
Biopsies are slightly different as an outpatient, just because of some of the things you have to do before hand. So first you go in to see the nurse, they do your observations and weigh you and then you get in a gown and trousers and do an MRSA swab. Biopsies are done in a biopsy suite in the transplant clinic which is a theatre like room but its just for biopsies. You have to sign a consent form and go through loads of questions with the nurse and then you have your procedure.
After biopsy you have to have a chest Xray to check for any bleeding or fluid around the heart and lungs. You're not allowed to walk there so my mum has to take me in a wheelchair, then you come back to clinic and chat with the doctor about your results. My echo showed that the pressures in my heart and lungs are normal and my heart function is good. They call you then the next day with your biopsy results.
Saturday 7th April
Friday night I went and tried on my bridesmaids dress! It's so pretty and even though I don't feel great in it yet because I'm pale and didn't have my makeup done, it fit perfectly and if my stomach swells up on the day you won't see it because of the style of the dress which is great!
So Emily picked me up from Bolton which is where the dress fitters is and we got sushi takeout from this place near her house which is soooo good! And we watched a movie with my dad and I stayed there for the night. Emily's birthday is tomorrow so that's why I'm staying so that I can decorate the house and let everyone in in the evening!
It was great to put makeup on and get dressed and be a bit normal again since being out of the hospital! My shakes are still quite bad from the medication so makeup is a struggle but it's getting better! My legs are still really skinny but I didn't think I looked too bad in jeans which I was excited about, and I even had a glass of prosecco!
Wednesday 4th April
I went for my first echo today since transplant! So I was at the clinic for 9am, you can't take your medicine in the morning when you go to clinic because they do your bloods and they test the level of anti rejections in your blood so they ask what time you took my medicine the night before and then once you've had bloods done you can take your morning medicines.
They were running behind with biopsies so after having my bloods done I went to echo, echos are done in the heart failure clinic, not the transplant clinic, its just in the next building. Very strange walking back into the heart failure clinic, this is where I first met Steve Shaw a year ago and he said 'we'll see you in 6 months' until he changed his mind and sent me for another exercise test.
I'm a bit nervous about having an echo because the pacing wires in my chest have been really hurting me recently so I'm worried about it hurting. I've had numerous echos before so I know the process, but I'm very excited to see my new heart! It was a student nurse that did my echo so it took about 45 minutes which was really annoying because even though it didn't hurt during, because I was lay on my side for so long the wires hurt when I straightened up! I waited for my report to take back to the transplant clinic and headed back there for about 10:30.
Biopsies are slightly different as an outpatient, just because of some of the things you have to do before hand. So first you go in to see the nurse, they do your observations and weigh you and then you get in a gown and trousers and do an MRSA swab. Biopsies are done in a biopsy suite in the transplant clinic which is a theatre like room but its just for biopsies. You have to sign a consent form and go through loads of questions with the nurse and then you have your procedure.
After biopsy you have to have a chest Xray to check for any bleeding or fluid around the heart and lungs. You're not allowed to walk there so my mum has to take me in a wheelchair, then you come back to clinic and chat with the doctor about your results. My echo showed that the pressures in my heart and lungs are normal and my heart function is good. They call you then the next day with your biopsy results.
Saturday 7th April
Friday night I went and tried on my bridesmaids dress! It's so pretty and even though I don't feel great in it yet because I'm pale and didn't have my makeup done, it fit perfectly and if my stomach swells up on the day you won't see it because of the style of the dress which is great!
So Emily picked me up from Bolton which is where the dress fitters is and we got sushi takeout from this place near her house which is soooo good! And we watched a movie with my dad and I stayed there for the night. Emily's birthday is tomorrow so that's why I'm staying so that I can decorate the house and let everyone in in the evening!
It was great to put makeup on and get dressed and be a bit normal again since being out of the hospital! My shakes are still quite bad from the medication so makeup is a struggle but it's getting better! My legs are still really skinny but I didn't think I looked too bad in jeans which I was excited about, and I even had a glass of prosecco!
Just a few things that I've noticed already from the drugs I'm taking, asides from nausea (which I'm pleased to say is becoming less frequent). I am enjoying food again! Before transplant I was full of fluid so I didn't have an appetite, my stomach would swell all the time and be really painful and I would feel sick a lot of the time especially after eating.
My hair is growing ridiculously fast! Steroids make your hair grow more, so the hair on my face isn't much fun but I can get rid of it, but the hair on my head is also growing really quickly! So I'll have to get my roots done more often! SPOILER: I'm not naturally blonde ;) My nails are also growing really quickly, so steroids must affect your hormones, I have to file them right down at least once a week, by the end of the week they've grown massively. My skin is also more oily, which I've since found out is from the steroids, although luckily I haven't gotten spots as a result so I can't complain! It just means that makeup doesn't stay on as well.
I still have shaky hands from the Prograf, they are getting better though, and they tend to get worse when I haven't eaten much.
Also, I've been having a lot of problems with my shoulders and back, I think it's because I'm sleeping on my back and tensing my shoulder to try and not strain my chest and this is putting pressure on my back muscles. I've always had dodgy shoulders so it's nothing new, it's just annoying on top of the rest of the aches and pains!
SCARS and bruising
These were taken about a week after I can home so just over a month after my transplant.
I am aware that these photos are not flattering! But they are real and for anyone going through the transplant journey I think it's important to know what you'll look like when you wake up! When I had my first shower in ICU I was shocked looking down at my body as I didn't realise I would be so bruised! Scars aren't pretty despite what people say, and people are squeamish when I have a top on that shows them (I can tell) but I refuse to feel the need to hide them, they show how strong my body is which I think is pretty cool.
I obviously don't have photos of my groin, but I have bruising on both sides from right down in my groin up towards my hip bones (you can see the top of the bruises), this is from where they attempted to put in the balloon pump after surgery and they couldn't get it in one side so they went through the other side. They put it through the vein in your groin and I can only assume it's so bruised from the blood thinners that I was then on after surgery as well as high dose steroids. There's bruising on my stomach which I don't know what from! But it wraps all the way round my side and my stomach is still quite swollen from fluid and from the bruising.
The scars underneath my main incision is from where I had three drains coming out and they were stitched in, and the small dots under each boob are from where I had pacing wires coming out of me that were plugged into an external pace maker. I also have scars on my neck from where I had central lines in after surgery, and also from where I have biopsies done.
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