I can only apologise for it taking so long to get this blog post up! As much as I enjoyed my time in Wythenshawe hospital, now that I'm at home I've been busy jumping new hurdles, achieving new milestones and I've not really wanted to look back in the past other than to realise how far I've come! So I've decided to quickly sum up my couple of weeks on the ward so that I can then move on to updating you on all the exciting things I'm not experiencing! But if you have any questions or want more details please just leave a comment or message me on social media.
Monday 12th March
Today was my first rough day. I'd been getting better each day and I kept telling myself that each day will be better than the last when in reality, recovery is much more like a rollercoaster. Gemma (one of the healthcares) washed my hair yesterday which was amazing because it makes you feel so much better! I still can't have a shower because I have pacing wires that are attached to my heart muscle and they come out of my chest into an external pace maker, so you can't get it wet! So I have my hair washed over the sink and it then took about 3 hours to brush the knots out! Haha.
So then monday was a tough day, I was in a lot of pain, so I couldn't get comfortable all day. I was hot and sweaty and my groin was really painful where all my bruising isfrom the balloon pump being inserted. Probably because I've been using them more, my arms are really weak and sore and my chest is now really sore! It's muscular so it feels like someones punched me in the chest over and over.
I also got really emotional today about my donor. I've thought about them since I woke up but I've tried not to dwell on it but tonight I was sat with Ciaran talking and I just got really upset. I know that they were going to die anyway and it's not guilt that I feel, it's just that I feel I've lost someone really close to me and I'm upset about their death, even though I don't even know who they are! It's also hard to get my head around the fact that they died and I got to live, I just don't find that very fair.
Tuesday 13th March
I had all my pills and IVs in the morning as usual and then physio came and got me and I walked down the stairs and back up again! I'm very wobbly as there's no strength in my legs but my chest feels great, there's no pain like I used to get and barely any breathlessness! Which is crazy considering I've only been awake for a few days! Had a quick wash by myself, putting clean pjs on is the nicest feeling when you're in hospital! I feel really ill today, the nurses keep saying it's the drugs but I don't think it is. I have a pain that feels like cystitis and I feel really dizzy and feverish. So I asked for them to test my wee and there was blood in it when they dipped it but I have to wait 48 hours for the results!
So I've been really uncomfortable all evening, I have a lot of pain in my lower abdomen and I'm burning up and then I was really sick in the evening. So I took 2 codeine and passed out until about 1:30am when I had to get up for a wee. Looking forward to seeing the doctors tomorrow to see what they can do!
This is just my morning pills, this doesn't include pain relief, an IV antibiotic that I have or antisickness.
Wednesday 14th March
My doctor this morning said to just give me antibiotics seen as there was blood in my wee and I've had cystitis before so I know what the pain feels like, which I'm over the moon about! It's honestly the worst pain ever, and it's not fun having to go to the toilet all the time when it's not easy for me to walk there! He's also prescribed me some mouthwash as I bit a chunk out of my tongue in ICU and its making it difficult to eat, but I have had more of an appetite today so I'm just picking at the things that I fancy.
He said that I'm okay to go to my dad's wedding in Ireland in April either on the plane or the boat, and I just have to be vigilant with my hand hygeine. Normally you're not discharged until your second biopsy but if my biopsy is clear on monday he's said I can go home for the weekend and I can come back in on sunday night for my second biospy on the monday morning!
Friday 16th March
The days are going much quicker now that I'm comfortable and in a good routine. And I went for a walk off the ward today with Ciaran! It's hard to say how far I walked unless you know Wythenshawe hospital but I walked down a couple of corridors to get out of the ward and then down the lift and then to the cafe, so its quick a trek as it's a huge hospital! I wasn't tired or out of breath, it was amazing! We took the wheel chair with us just in case and I needed to rest my legs (they still don't feel like my legs as it's so hard to pick them up!) before we walked back but my chest feels amazing. I also sat outside for a bit which was great because I've not had any fresh air in so long!
Sunday 18th March
I'm back down to my preop weight and because I'm moving around I should be taken off the diuretics tomorrow which will be nice! I was 66kg before my op although some of that was already fluid retention, then I was 75kg when I was in CTCCU and now I'm back down to about 66 again. Nervous for my first biopsy! More that I'm nervous for the result than the procedure, especially with the sickness that I've been having and things, I'm just scared I'll have rejection. It's crazy that I've already had my op and I'm in recovery, it feels like months ago that they called me saying get to the hospital but it's all been so quick that I can't quite believe I've got a new heart!
My right arm is really bugging me, I've not been able to move it for a few days and I'm right handed so it's a pain! But I keep exercising it with physio even though it really hurts!
Monday 19th March
So today I was rudely woken up at 6am asking if I wanted breakfast! I barely knew what day it was! I was a bit nervous for the procedure but I didn't feel a thing and I was back on the ward after a couple of hours. So the result will be back tomorrow morning and then hopefully I can have my pacing wires and drain out!!
Tuesday 20th March
No rejection!! I think it actually showed mild rejection but it's in grades and I had the tiniest amount so there was no change in my medication or anything. I had the drain taken out on the ward which I was worried about because I thought it would hurt but it didn't which was really weird! It was a strange feeling and it's really long, but it didn't hurt. And then they cut the wires close to your skin and they stay attatched to your heart because sometimes they pull them out but they tend to get stuck and they end up cutting them anyway so my nurse prefers to just cut them.
I was told by one doctor that I could probably go home thursday but obviously everything gets dragged out and I finally went home on the friday as originally planned.
Friday 21st March
I decided to stay at my dad's house so I was nice and close to the hospital and so I could spend some time being looked after and have a nice bath! I decided to have a shower because my dad's bath in quite deep and I was worried I wouldn't be able to get out! So I have a chair that I sat on in his shower and I washed my own hair and I felt amazing!
Then things went down hill... I was exhausted for one, but I assumed this was normal because I was walking around more than I would have been in the hospital but I was sat on the sofa at my dads I felt really sick. They increased one of my antirejection drugs this morning as they thought my levels might drop a bit too much, and I went home without any antisickness tablets. So I couldn't stomach any dinner and then I was sick twice around 8pm. So I waited until as late as I could to take my medicine as I didn't want to bring it back up, but I took it about 10:30 and I was sick at 11. I called the ward and they said not to take it again but to call the ward in the morning for some anti sickness. I was sick every hour throughout the night, barely slept, and I was just bringing up water. It was horrendous. I felt so weak by the morning and I called the ward at 8am and they wanted me back in, I was so gutted as I was so excited to spend the weekend at my dad's but I was also happy to be back on the ward and have the nurses make me better!
Monday 12th March
Today was my first rough day. I'd been getting better each day and I kept telling myself that each day will be better than the last when in reality, recovery is much more like a rollercoaster. Gemma (one of the healthcares) washed my hair yesterday which was amazing because it makes you feel so much better! I still can't have a shower because I have pacing wires that are attached to my heart muscle and they come out of my chest into an external pace maker, so you can't get it wet! So I have my hair washed over the sink and it then took about 3 hours to brush the knots out! Haha.
So then monday was a tough day, I was in a lot of pain, so I couldn't get comfortable all day. I was hot and sweaty and my groin was really painful where all my bruising isfrom the balloon pump being inserted. Probably because I've been using them more, my arms are really weak and sore and my chest is now really sore! It's muscular so it feels like someones punched me in the chest over and over.
I also got really emotional today about my donor. I've thought about them since I woke up but I've tried not to dwell on it but tonight I was sat with Ciaran talking and I just got really upset. I know that they were going to die anyway and it's not guilt that I feel, it's just that I feel I've lost someone really close to me and I'm upset about their death, even though I don't even know who they are! It's also hard to get my head around the fact that they died and I got to live, I just don't find that very fair.
Tuesday 13th March
I had all my pills and IVs in the morning as usual and then physio came and got me and I walked down the stairs and back up again! I'm very wobbly as there's no strength in my legs but my chest feels great, there's no pain like I used to get and barely any breathlessness! Which is crazy considering I've only been awake for a few days! Had a quick wash by myself, putting clean pjs on is the nicest feeling when you're in hospital! I feel really ill today, the nurses keep saying it's the drugs but I don't think it is. I have a pain that feels like cystitis and I feel really dizzy and feverish. So I asked for them to test my wee and there was blood in it when they dipped it but I have to wait 48 hours for the results!
So I've been really uncomfortable all evening, I have a lot of pain in my lower abdomen and I'm burning up and then I was really sick in the evening. So I took 2 codeine and passed out until about 1:30am when I had to get up for a wee. Looking forward to seeing the doctors tomorrow to see what they can do!
Wednesday 14th March
My doctor this morning said to just give me antibiotics seen as there was blood in my wee and I've had cystitis before so I know what the pain feels like, which I'm over the moon about! It's honestly the worst pain ever, and it's not fun having to go to the toilet all the time when it's not easy for me to walk there! He's also prescribed me some mouthwash as I bit a chunk out of my tongue in ICU and its making it difficult to eat, but I have had more of an appetite today so I'm just picking at the things that I fancy.
He said that I'm okay to go to my dad's wedding in Ireland in April either on the plane or the boat, and I just have to be vigilant with my hand hygeine. Normally you're not discharged until your second biopsy but if my biopsy is clear on monday he's said I can go home for the weekend and I can come back in on sunday night for my second biospy on the monday morning!
Friday 16th March
The days are going much quicker now that I'm comfortable and in a good routine. And I went for a walk off the ward today with Ciaran! It's hard to say how far I walked unless you know Wythenshawe hospital but I walked down a couple of corridors to get out of the ward and then down the lift and then to the cafe, so its quick a trek as it's a huge hospital! I wasn't tired or out of breath, it was amazing! We took the wheel chair with us just in case and I needed to rest my legs (they still don't feel like my legs as it's so hard to pick them up!) before we walked back but my chest feels amazing. I also sat outside for a bit which was great because I've not had any fresh air in so long!
Sunday 18th March
I'm back down to my preop weight and because I'm moving around I should be taken off the diuretics tomorrow which will be nice! I was 66kg before my op although some of that was already fluid retention, then I was 75kg when I was in CTCCU and now I'm back down to about 66 again. Nervous for my first biopsy! More that I'm nervous for the result than the procedure, especially with the sickness that I've been having and things, I'm just scared I'll have rejection. It's crazy that I've already had my op and I'm in recovery, it feels like months ago that they called me saying get to the hospital but it's all been so quick that I can't quite believe I've got a new heart!
My right arm is really bugging me, I've not been able to move it for a few days and I'm right handed so it's a pain! But I keep exercising it with physio even though it really hurts!
Monday 19th March
So today I was rudely woken up at 6am asking if I wanted breakfast! I barely knew what day it was! I was a bit nervous for the procedure but I didn't feel a thing and I was back on the ward after a couple of hours. So the result will be back tomorrow morning and then hopefully I can have my pacing wires and drain out!!
Tuesday 20th March
No rejection!! I think it actually showed mild rejection but it's in grades and I had the tiniest amount so there was no change in my medication or anything. I had the drain taken out on the ward which I was worried about because I thought it would hurt but it didn't which was really weird! It was a strange feeling and it's really long, but it didn't hurt. And then they cut the wires close to your skin and they stay attatched to your heart because sometimes they pull them out but they tend to get stuck and they end up cutting them anyway so my nurse prefers to just cut them.
I was told by one doctor that I could probably go home thursday but obviously everything gets dragged out and I finally went home on the friday as originally planned.
Friday 21st March
I decided to stay at my dad's house so I was nice and close to the hospital and so I could spend some time being looked after and have a nice bath! I decided to have a shower because my dad's bath in quite deep and I was worried I wouldn't be able to get out! So I have a chair that I sat on in his shower and I washed my own hair and I felt amazing!
Then things went down hill... I was exhausted for one, but I assumed this was normal because I was walking around more than I would have been in the hospital but I was sat on the sofa at my dads I felt really sick. They increased one of my antirejection drugs this morning as they thought my levels might drop a bit too much, and I went home without any antisickness tablets. So I couldn't stomach any dinner and then I was sick twice around 8pm. So I waited until as late as I could to take my medicine as I didn't want to bring it back up, but I took it about 10:30 and I was sick at 11. I called the ward and they said not to take it again but to call the ward in the morning for some anti sickness. I was sick every hour throughout the night, barely slept, and I was just bringing up water. It was horrendous. I felt so weak by the morning and I called the ward at 8am and they wanted me back in, I was so gutted as I was so excited to spend the weekend at my dad's but I was also happy to be back on the ward and have the nurses make me better!
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