I am now 7 months post diagnosis, and my opinions and feelings on this whole situation have changed so much. I wish i wrote my feelings down more often as i was experiencing them, because i cant even put myself into that position again and i cant portray what i went through.
Over the passed month, i feel as though i have got stronger and stronger and i am doing loads! But all my tests results are really rubbish and i ache so bad! This is why i didn't really want to write my blog and i didn't go to see my psychologist because i just wanted to enjoy feeling so good :)
I decided to start writing it again today because I'm going to Papworth tomorrow to be assessed for a transplant. During May and the beginning of June, I felt really good about myself, like i was some kind of machine and like i could deal with anything ;)
But now tomorrow is soooo close and I'm soooooo scared :(
I feel really energetic and I'm building myself up for them to say that i have made a miraculous recovery but I'm guessing i haven't and I'm supposed to be prepared for things to get a lot worse.
Sooooooooooooo Roll on tomorrow :/
Sunday 17 June 2012
Sunday 27 May 2012
I found it really difficult to accept what had happened over the last few months, which i guess anyone would also find hard!
My head was full of so much negativity. I had pains that i just couldn't explain. I had daily episodes of just feeling my life slipping away and i could actually feel my heart stopping.
The only thing keeping me going was my fantastic family.
Until the end of February i was pretty much living in my pyjamas and in the bath 3 times a day as it was so warm and my circulation was so poor, i felt like my fingers and toes were going to drop off.
There are a few experiences that i should probably explain right about now.....
but i just can't. I perhaps haven't quite come to terms with everything! I keep typing them and then deleting them as they make me cry.
But anyway. Me and Rob went off to a hotel for the evening, just to have some space really and enjoy the jacuzzi and sauna. I had a genuinely great time, which i didn't think would ever happen again but i was sooooooooooooo knackered the next day.
In March things improved for me psychologically a lot! I still had my moments! But i felt like there may be light at the end of the tunnel. It was just a long tunnel!
Throughout March and April, i had to attend various appointments at Glenfield. I was rushed back once due to water retention, They wanted me to be admitted but i really didn't want to stay. The next week when i went back i had lost over 7kgs! My cardiologist was trying to be upbeat and encouraging. But i still went home disheartend. He told me that my BNP blood test result is around 4000 and it should be 35. He told me not to panic and nothing was certain but he needed to refer me to The Papworth Transplant centre. So me being me went home and googled BNP Blood results and came up with a load of horror stories about, high BNP being over 100 or something like that and people dying with it so much lower than mine.
Great!
My head was full of so much negativity. I had pains that i just couldn't explain. I had daily episodes of just feeling my life slipping away and i could actually feel my heart stopping.
The only thing keeping me going was my fantastic family.
Until the end of February i was pretty much living in my pyjamas and in the bath 3 times a day as it was so warm and my circulation was so poor, i felt like my fingers and toes were going to drop off.
There are a few experiences that i should probably explain right about now.....
but i just can't. I perhaps haven't quite come to terms with everything! I keep typing them and then deleting them as they make me cry.
But anyway. Me and Rob went off to a hotel for the evening, just to have some space really and enjoy the jacuzzi and sauna. I had a genuinely great time, which i didn't think would ever happen again but i was sooooooooooooo knackered the next day.
In March things improved for me psychologically a lot! I still had my moments! But i felt like there may be light at the end of the tunnel. It was just a long tunnel!
Throughout March and April, i had to attend various appointments at Glenfield. I was rushed back once due to water retention, They wanted me to be admitted but i really didn't want to stay. The next week when i went back i had lost over 7kgs! My cardiologist was trying to be upbeat and encouraging. But i still went home disheartend. He told me that my BNP blood test result is around 4000 and it should be 35. He told me not to panic and nothing was certain but he needed to refer me to The Papworth Transplant centre. So me being me went home and googled BNP Blood results and came up with a load of horror stories about, high BNP being over 100 or something like that and people dying with it so much lower than mine.
Great!
Thursday 17 May 2012
The week leading up to Christmas was so scary and so hard. Rob was at work until 2pm everyday and i could hardly move from the bed. On Christmas eve, we decided that we wanted to go back to our own house and attempt to enjoy our first Christmas morning together as a little family.
Being back in that house was so hard. All the memories and the plans, that i had for us living in that cute little house and bringing Thomas up together just made me cry.
Christmas was so tiring and i knew how much my mum loved it. She wanted everyone to have a great time but i just sat in the bathroom throwing up!
The next few weeks passed by with lots of throwing up and a really bad cough. I hated new year as i was pretty depressed and death was all i could see. Everyone was making their new years resolutions and wishing happy new year. Pissssssssssssssssss off i thought :)
At the beginning of January i was at my Doctors surgery having a regular blood test called INR so that i could be dosed for warfarin. The nurse was concerned about my blood pressure being so low, my lips being blue and how pale my skin was. So she got a doctor who said i needed to go to Grantham Hospital as soon as possible. So i threw up my actual lunch, it looked like chicken stew and it even smelt like chicken stew!
Off we went again, only my dad looked after Thomas. When we arrived i was told straight away that i would be staying in. I just did not want to be there. I really didn't want to fight anymore. I had a scan of my abdomen which showed that i had an enlarged liver and it was in a similar condition to that of an 80 year old man.
I also had a scan of my heart done again which showed that the pacemaker was working and i was more stable but the function of my heart had barely improved.
The doctors explained to me that there is often a backlog when the heart fails and it can often lead to liver failure and then other organs begin to fail. This explained why i was being sick, along with getting used to the various tablets. I was allowed to go home the next day, As they expected my body to react in this way due to the level of heart failure.
Throughout January and February i was going to weekly checkups at Glenfield hospital. Finally towards the end of Feb, due to a change in medication, the sickness eased off to just a couple of times a week rather than 3 times a day!
I was feeling a lot better than what i had but life was still rubbish!
Being back in that house was so hard. All the memories and the plans, that i had for us living in that cute little house and bringing Thomas up together just made me cry.
Christmas was so tiring and i knew how much my mum loved it. She wanted everyone to have a great time but i just sat in the bathroom throwing up!
The next few weeks passed by with lots of throwing up and a really bad cough. I hated new year as i was pretty depressed and death was all i could see. Everyone was making their new years resolutions and wishing happy new year. Pissssssssssssssssss off i thought :)
At the beginning of January i was at my Doctors surgery having a regular blood test called INR so that i could be dosed for warfarin. The nurse was concerned about my blood pressure being so low, my lips being blue and how pale my skin was. So she got a doctor who said i needed to go to Grantham Hospital as soon as possible. So i threw up my actual lunch, it looked like chicken stew and it even smelt like chicken stew!
Off we went again, only my dad looked after Thomas. When we arrived i was told straight away that i would be staying in. I just did not want to be there. I really didn't want to fight anymore. I had a scan of my abdomen which showed that i had an enlarged liver and it was in a similar condition to that of an 80 year old man.
I also had a scan of my heart done again which showed that the pacemaker was working and i was more stable but the function of my heart had barely improved.
The doctors explained to me that there is often a backlog when the heart fails and it can often lead to liver failure and then other organs begin to fail. This explained why i was being sick, along with getting used to the various tablets. I was allowed to go home the next day, As they expected my body to react in this way due to the level of heart failure.
Throughout January and February i was going to weekly checkups at Glenfield hospital. Finally towards the end of Feb, due to a change in medication, the sickness eased off to just a couple of times a week rather than 3 times a day!
I was feeling a lot better than what i had but life was still rubbish!
Monday 7 May 2012
I was so worried that i was going to be in hospital for Thomas' first Christmas. I felt like i was ruining it for everyone. On the 16th December, I decided that i really wanted to go home, the doctors advised me to give it a few more days but my mind was made up. They agreed and started the process of discharging me, as Dr Loke knew how much i wanted to be with Thomas. I had to stay pretty much all day, threw up a few times but i was so excited. I was definitely still strongly believing i was going to die, but i just wanted my family.
Rob and my mum arrived and we spent a couple of hours just waiting with my packed bags! A nurse came and showed me all my tablets and gave me a load of paperwork.
I looked down into the green bag she had given me and felt totally numb. All the tablets really scared me. I was on around 20 a day including pain killers.
We were allowed to go! well i had to go in a wheelchair as i was still very weak and couldn't walk hardly at all. When we got outside the cold hit me really hard i felt like my fingers and toes were going to drop off. I felt as though my face was bleeding and i just couldn't catch my breath.
That was a very long journey! Very uncomfortable also as i couldn't sit back, but i felt to weak to hold myself up.
When we got back, after lots of cuddles with Thomas me and Rob decided that we would spend the night together in our own house for what would probably be the last time. It felt lovely to be back in our bed, and it was the first night i hadn't been lonely, even though i was in so much pain i was a lot more comfortable at home.
Rob went to work the next morning at 7am. My mum, dad and Thomas came round at 9am, I was a little bit anxious at being on my own, i didn't move from my bed until they arrived. I loved spending time with Thomas and he gave me those looks that you only give Mummy!
My grandad and his wife Fiona came up from Ipswich to see me and we compared pacemakers as he had one too.
When Rob came home at 2pm, we decided that we wouldn't be able to cope with Thomas and me barely able to move. My parents agreed that we could move in with them. Oh great! I love my mum and dad to pieces but this was like being a kid again! But we didn't have a choice, it just wouldn't have been fair on any of us.
Rob and my mum arrived and we spent a couple of hours just waiting with my packed bags! A nurse came and showed me all my tablets and gave me a load of paperwork.
I looked down into the green bag she had given me and felt totally numb. All the tablets really scared me. I was on around 20 a day including pain killers.
We were allowed to go! well i had to go in a wheelchair as i was still very weak and couldn't walk hardly at all. When we got outside the cold hit me really hard i felt like my fingers and toes were going to drop off. I felt as though my face was bleeding and i just couldn't catch my breath.
That was a very long journey! Very uncomfortable also as i couldn't sit back, but i felt to weak to hold myself up.
When we got back, after lots of cuddles with Thomas me and Rob decided that we would spend the night together in our own house for what would probably be the last time. It felt lovely to be back in our bed, and it was the first night i hadn't been lonely, even though i was in so much pain i was a lot more comfortable at home.
Rob went to work the next morning at 7am. My mum, dad and Thomas came round at 9am, I was a little bit anxious at being on my own, i didn't move from my bed until they arrived. I loved spending time with Thomas and he gave me those looks that you only give Mummy!
My grandad and his wife Fiona came up from Ipswich to see me and we compared pacemakers as he had one too.
When Rob came home at 2pm, we decided that we wouldn't be able to cope with Thomas and me barely able to move. My parents agreed that we could move in with them. Oh great! I love my mum and dad to pieces but this was like being a kid again! But we didn't have a choice, it just wouldn't have been fair on any of us.
Monday 23 April 2012
I cried pretty much the whole way to Glenfield. I was so convinced that i was going to die, I just thought whats the point? I might as well go home and spend my time with Thomas.
I was also really worried that i would be stressing my mum and dad out. Everyone was so happy i was closer and i felt like i had let them down even though it wasn't my fault.
No one was surprised to see me back at Glenfield, which made me quite mad. Someone should have stopped me being transferred back to Grantham as it gave me false hope.
My mum, dad and Thomas arrived pretty much as soon as i did. I wanted to be with them and make them all happy but i knew i just couldn't and i blamed myself. Dr Loke, the cardiologist came straight down and apologised for the mistake, but i couldn't stop crying.
The sickness really took over now, i couldn't even think about food without throwing up. I lost a lot of weight, around 2 stone in 2 weeks. I also became really moody and hated it when anyone spoke to me, especially when people said "awwwww you have had such a rough time", Yeah i bloody know!
I heard the familiar voice of the old lady from Grantham, that was waiting for a pacemaker, how strange that she would be in the bed opposite me at the same hospital. She did make me smile when she had a phone call from her son but couldn't work out why he sounded so far away, probably as she had the phone upside down!
I stayed in that bed out on the ward for a couple of nights, with a right old snorer in the bed next to me.
My blood pressure was still really low but my heart rate had stabilised, so the doctors said i could be unhooked from the monitors. As they had found a blood clot in my heart i was started on warfarin tablets. Yay more tablets! Not! It was good to be free and i could throw up in the comfort of the toilet rather than a cardboard pot.
I was moved into a side room again as the toilet was closer and i couldn't walk very far.
Over the next few days i would say i did get a bit stronger. Rob took me for walks up the corridor in a wheelchair and i sat in the day room and watched TV.
One Saturday Rob spent the whole day with me, he really cheered me up. After he left i struggled down to the day room to watch the xfactor final, i wish i didn't. Simply having a wonderful Christmas time! All the songs made me burst out crying and the adverts were full of happy little families. I wanted my baby so much. I could see out the window it was snowing, i wondered if i would ever be out in it with Thomas i craved him so bad!
I went to bed still crying. I still couldn't sleep and kept having to sit up as i wouldn't be able to catch my breath.
I stayed in hospital for a further 6 days, and they were pretty boring but i was so excited to get visits from My Mum, Dad, Thomas and Rob also my brother James. I didn't want anyone else to see me, i was such a mess.
On one of the week days, James, Mum and Thomas were sitting with me when i started throwing up, I was given some anti sickness medication through a drip and i had a fit, i remember seeing Thomas' face as James took him out of the room, I thought that was the last time i would see him. When i came round the Dr told me it was an allergic reaction to the anti sickness. Which was a relief as me and mum thought it was my heart.
I was also really worried that i would be stressing my mum and dad out. Everyone was so happy i was closer and i felt like i had let them down even though it wasn't my fault.
No one was surprised to see me back at Glenfield, which made me quite mad. Someone should have stopped me being transferred back to Grantham as it gave me false hope.
My mum, dad and Thomas arrived pretty much as soon as i did. I wanted to be with them and make them all happy but i knew i just couldn't and i blamed myself. Dr Loke, the cardiologist came straight down and apologised for the mistake, but i couldn't stop crying.
The sickness really took over now, i couldn't even think about food without throwing up. I lost a lot of weight, around 2 stone in 2 weeks. I also became really moody and hated it when anyone spoke to me, especially when people said "awwwww you have had such a rough time", Yeah i bloody know!
I heard the familiar voice of the old lady from Grantham, that was waiting for a pacemaker, how strange that she would be in the bed opposite me at the same hospital. She did make me smile when she had a phone call from her son but couldn't work out why he sounded so far away, probably as she had the phone upside down!
I stayed in that bed out on the ward for a couple of nights, with a right old snorer in the bed next to me.
My blood pressure was still really low but my heart rate had stabilised, so the doctors said i could be unhooked from the monitors. As they had found a blood clot in my heart i was started on warfarin tablets. Yay more tablets! Not! It was good to be free and i could throw up in the comfort of the toilet rather than a cardboard pot.
I was moved into a side room again as the toilet was closer and i couldn't walk very far.
Over the next few days i would say i did get a bit stronger. Rob took me for walks up the corridor in a wheelchair and i sat in the day room and watched TV.
One Saturday Rob spent the whole day with me, he really cheered me up. After he left i struggled down to the day room to watch the xfactor final, i wish i didn't. Simply having a wonderful Christmas time! All the songs made me burst out crying and the adverts were full of happy little families. I wanted my baby so much. I could see out the window it was snowing, i wondered if i would ever be out in it with Thomas i craved him so bad!
I went to bed still crying. I still couldn't sleep and kept having to sit up as i wouldn't be able to catch my breath.
I stayed in hospital for a further 6 days, and they were pretty boring but i was so excited to get visits from My Mum, Dad, Thomas and Rob also my brother James. I didn't want anyone else to see me, i was such a mess.
On one of the week days, James, Mum and Thomas were sitting with me when i started throwing up, I was given some anti sickness medication through a drip and i had a fit, i remember seeing Thomas' face as James took him out of the room, I thought that was the last time i would see him. When i came round the Dr told me it was an allergic reaction to the anti sickness. Which was a relief as me and mum thought it was my heart.
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