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.

Thursday, 12 July 2012

I went to Papworth on the 18th of June with Thomas and Rob. Despite trying to be realistic, i did build myself up for them to say i had made a full recovery. Yeah right!

I saw the nurse first and she did my blood pressure and explained what would be happening throughout the day.

I then had a chest xray and 9 vials of blood taken, where my hand went purple and freezing cold! I also had an ECG done again which was boring because of the pacemaker!

We sat waiting in the waiting area for around 20 mins, i felt quite confident as i had bee feeling so good. I was called in and i remember seeing this really beautiful girl who must of been my age and she was in a wheel chair and she had tubes all over her face, My stomach dropped and i felt really sick.

This was the first time i met my consultant at Papworth, Dr Lewis. In the room was 3 or 4 medical professionals including him. First of all i had to explain the whole situation pretty much from the pregnancy to today, and he wrote it all down.

He then explained the findings of the chest xray, me and rob looked at each other like omg! He showed us the pictures of my chest and my heart was even bigger than it was when this all started. I looked down at Thomas and his little eyes were so heavy, he fell asleep.

I know he doesn't understand, but i was glad Thomas was asleep. We talked for ages about the situation, but i cant even remember it, went in one ear and out of the other, they prescribed me some new medications and asked me if i had any questions about what was going to happen now.

Obviously i said yes! Haaa. Ummm this is when i was really glad Thomas was asleep as Dr Lewis explained that it is pretty impossible for me to be alive whenThomas starts secondary school without having a heart transplant. This being 11 years maximum and the average life with a transplant lasts 10 years.

I couldn't even cry. I had  a really bad headache but the rest of me felt numb, which is really strange as i knew this all along but it just felt horrible and shocking.

I wasn't going to write any of this as Ive been doing really well, walking and having more of a life :)
But the truth is that I'm more than likely making things worse long term.

Well anyway, I'm going to Papworth in the week beginning 20th August, to have tissue testing and some horrible needle put through my throat, and Ive got to stay there for 3 nights :(

Sunday, 17 June 2012

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, 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.


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!