Monday 27 August 2012

Well! The 20th of August has been and gone, and my stay in hospital was rather eventful! Bit of a roller coaster really!

After ending my relationship with Rob, i decided that i wanted to go through the rest of the whole heart thing on my own. Its really hard to concentrate on yourself, when you have people in your life that are selfish! I was made to feel as though what i was going through wasn't as important as certain other peoples feelings and at times over the last 9 months i definitely was a lot more important!

So my dad took me to Papworth on the morning of 20th August after doing a night shift! When we arrived at hospital, i was shown straight to my bed and got all tagged up :) haha.
I asked my dad to leave as i wanted to be on my own, so he kissed me on the head and walked away. Even though its what i wanted, i never felt so lonely. This is when my new best friend came in super handy :) good texts to cheer me up! He knows exactly who he is.

After about 15 minutes, a transplant coordinator sat with me and explained what would be going on over the next couple of days, he asked me if i was scared? what a strange man! obviously i was scared i don't know anyone that wants a needle and tube in there neck?

Now my favourite person from a hospital came and took 22 vials of blood..... Ouch

I had a few chats with different people, such as surgeons and transplant nurses, They were really scary and most of the information, i didn't really absorb.

At around 1pm, i was taken to do an exercise test and a lung function test. Which was actually quite hard. I had to walk round 2 cones for 6 minutes, whilst being monitored by a watch type thing that measured, my pulse and oxygen absorption. The results were pretty good! I then had a lung function test, and again the results were good, but i was so tired and it was really hard doing all these, breathing exercises into different machines. Finally i had to go on an exercise bike and continue pedalling at the same speed for as long as i could, even though it got harder and harder, again i was hooked up to loads of machines the results showed that i was actually very fit :)

I was taken back to the ward. I had a quick shower and when i got back to my bed, the transplant coordinator was waiting for me, he said that i could go home if i wanted and i didn't need a transplant anytime soon, so i got all my stuff together and phoned my dad.

Then the consultant came over and said noooooooooooooooooooooooooooooooooooo you have to stay. :(

I had some more blood taken, and i went for a little walk and got lost :/ But some nice security men ;) helped me get back to the ward. Had a really nice phone conversation, with THE nicest guy ever which made me feel better!

I didn't sleep that night, i started believing that i was so much better and everything was going to be OK.

First thing in the morning, i had more blood taken and watched everyone eat there breakfast as i wasn't allowed any :( A porter came and got me at around 10am, and i remember being super scared! I got into the surgery room and there were so many people in there. One of the doctors remembered me from when i stayed at Glenfield, as my condition is so rare.

I laid underneath the xray machine and struggled to breathe as i had to lie flat, which i can only just manage. The surgeon cleaned my neck and inserted the needle which stung so bad, i think it was more painful than the pacemaker! I felt him poking around for about 10 minutes and then once it was in the right position they flushed some fluid through it to see how my heart reacted to the fluid.

I was trying to listen to what they were all saying, but i was sort of slipping away, i was really numb all over and freezing cold. I could feel my heart beating really hard, like it was going to jump out of my chest.

Everyone kept asking me if i was OK and i thought to myself, i don't know am i? haha.

When the surgeon took the needle out around half an hour later, it began to sting again and i could feel it bleeding. They put a dressing on it and i got unhooked from all the machinery. I was then taken for another chest xray.

I got back to my bed at around 2pm and ate half a pork chop..........

Then i was taken to have an echo cardiogram. Same old rubbish results. I have a blood clot again on my heart and the function is still extremely poor.

One of the consultants called whilst i was having the scan done and said that he wanted to see me as soon as possible.

While i was waiting for the consultant, I found out that someone who i really admired and loved so much, had passed away after battling this condition, and undergoing a heart transplant. Megan Louise Canfield, I don't really know what to do without you!

When i got to his office there were 3 doctors including him, and 2 nurses. They had my medical notes and LOADS of other paper work. I just sat there whilst they discussed me. I was listening to them and they were very positive and then negative. The Lead Consultant then spoke directly to me and said that i was extremely rare because usually in Post Partum Cardiomyopathy, people don't recover this late on after no improvement during the first 6 months. Over the last 2 months the amount that i had improved was a miracle. However, the level of heart failure is still extremely high, and the function is very poor. We discussed all the results and they showed me the Xray that i had done in June and the one that i had just had done, it was amazing how much my heart had shrunk although they stressed how abnormally large it still was.

They told me that, as my symptoms are not as bad as they were previously, it is too early to be considered for a transplant. I asked what the life expectancy was..... 5 years, 80% of people in my position will have died. I didn't even cry, because someone really important mad me believe in myself and i think I'm the 20% that will live. I'm having another transplant assessment in February as its likely that my condition may have deteriorated by then, but also it may have got better :)

After only eating a pork chop and a mars bar in 24hours, My daddy took me to Mc donalds.
BIG MAC <3

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