Tuesday 17 April 2012

Walking back to my room, was really difficult. It was literally only a few metres but after just standing up i felt as though I'd ran a marathon. I was so dizzy and my legs ached like mad!

Mum, Dad, Thomas and Rob came a little later. We were chatting away when the man in the room next door, had a cardiac arrest and all his family were asked to stand outside. We think he died as they were crying a lot and he wasn't there the next day.

Every time Thomas looked at me i felt so guilty and as if i had really let him down. He was just starting to smile and laugh and i was missing it all. I thought that i didn't deserve to be his mum. He was so perfect and i just wasn't good enough. Every time they took him away from me the aching was a whole lot worse!

After a couple of days i was moved into the next room, as it was closer to the nurses station and they wanted to keep an eye on me as i am so young. I could barely sleep at night and all the medication i was on made me so sick at least twice a day. I also had diarrhoea which was great fun as i was attached to the monitor and i wasn't allowed off it, so i was majorly dizzy, about to poo myself, had absolutely no energy and had to navigate to the toilet with only just enough wire to stay attached!

I can't really remember all my feelings over the next couple of days and i can barely remember what went on but my cardiologist had a day off and i was being looked after by a different doctor.

He discharged me back to Grantham Hospital as the pacemaker was doing it's job and i was supposedly doing well on the medication. This came as a bit of a shock, and i could tell the nurses thought it was a bad idea but i wasn't complaining. This really gave me some hope that i could get closer to my family especially little Thomas. 

I packed all my stuff straight away and sat out of breath on the edge of the bed. I kept looking at my phone and seeing my pictures of Thomas and i was so excited. All the rubbish i was going through just went away i was so excited to bond with him again and be his mummy. I phoned my mum and Rob to tell them and they also were shocked but so pleased.

The ambulance came to take me back to Grantham and i felt absolutely awful! It was so cold outside, it took what little breath i had away. My blood pressure dropped dangerously low in the ambulance and i could feel myself drifting off. I just heard one of the crew say to the other we'll be back later! But i just wanted to go home.

It felt like we got to Grantham in the blink of an eye. Mum, Dad, Rob and Thomas were there and i felt good :) All the nurses were surprised that i had been sent back but i was just so happy!

I managed to sit in the day room with my family and i began to feel really tired but Thomas looked at me, and it was like it was just us in the room and i knew, he knew me i felt on top of the world!

Well emotionally i did but physically i was wrecked! I got back into bed and all the nurses were fussing over me! There was a little old lady in the bed opposite who was waiting for a transfer to Glenfield to have a pacemaker, she was really lovely but very chatty and a bit deaf. I just did not have the energy!

I started to feel REALLY dizzy. It was my blood pressure again that was jumping around.
The trouble with the medication, is that you need a high dose to make a difference and it lowers your blood pressure and mine just wasn't holding out.

I had a rubbish night again, threw up a couple of times and as i wasn't quite so down and depressed i was even bored!

The next morning at around 8am all the machines that i was connected to started beeping really loudly and all the nurses gathered round and gave me oxygen and did all their little tests. No one really said anything to me as per usual! A doctor came a few moments later with the echo machine and i had another ultrasound of my heart.

They found a large blood clot, (Thrombus) in my heart and i was immediately transferred back to Glenfield under the instruction of my cardiologist, who was furious that i had been discharged to Grantham.

2 comments:

  1. Author: David Courtney-Jones PGCE Cert Ed MIH: MWMCS:
    www.davidcourtneyjones.co.uk
    davidcourtneyjones@btinternet.com
    tel: 07814-391321

    if anyone wishes to contact me then please do so.
    if any suitors wish to contact me also please do so.
    I would like to meet anyone anywhere, and in my areas. South Wales.
    But if someone is interested in me from anywhere then please get in touch.
    Thank you.
    Please read below.


    Letter i wrote to Sarah:
    Please read below>:
    Hi Sarah ( Cardiomyopathy Information manager)
    I wonder if you have any information for people like me with DCM and an ICD fitted to find a partner date? Im 50, and on my own, with no family or friends and have cardiomyopathy.
    There is no chance on earth that anyone would be interested in in dating me as im a liability and the long term prognoses is unclear, although i am doing very well.
    Have you and the cardiomyopathy society thought about setting up a dating site for us, people like me, lonely or at least a frindship site or able to put me and people like me in touch with others like me.
    im sure i cant be the only one who needs this and is in this predicament.
    Im lonely, need love and companionship and if im ill or in hospital i have nobody.
    I hope you can advise.?
    Best regards David Courtney-Jones ( Cardiff, Wales).

    Sarahs reply was to put my quirie on this message board for all to see. read below my reply further to her.

    Hi Sarah,
    I was thinkimg of maybe you guys dedecating a page to Cardiomyopathy people for introductions and friendships.
    No one will be with me because im damaged goods, its like saying to someone ive got cancer would you like a date?
    No one understands us or our condition or how we have to manage our lives to stay a little in control of our condition. or the hardships this terrible condition brings.
    Also no one will marry us or be partners with us. so its a lonely life.
    Not just the dating thing but friendships also, its nice to be able to be with a partner who understands and cares and is concerned or is knowledged about this condition and can empathise and be there for each other, its a lonely world being ill.
    I try and work as much as i can and get by, but everytime i meet a lady and we go out on a date or two, she likes me so i confide in her my illness she doesnt want then to know or be responsible for someone like me if things go wrong which they do occasionally for me, last Xmas i nearly deid and so on, its difficult for people, so the only people who would go out with me or people like me are someoene else who had this condition so there is a real need for you to include a back page or half a page so people can introduce themselves, visit each other and you never know go out with each other or be married,
    we need this for our quality of life what there is left of it.!!! its hard enough to live and mange this condition without being extremely lonely on top.
    Try and organise this, its not much trouble for you guys, just put in a page for people to be contacted who are single and wish to meet others like me.

    best regards
    Author: David Courtney-Jones PGCE Cert Ed MIH: MWMCS:
    www.davidcourtneyjones.co.uk
    davidcourtneyjones@btinternet.com
    tel: 07814-391321

    ReplyDelete
  2. hi rachel
    I have post partum dilated cardiomyopathy too.. I am in my 14th year of having it. Stay strong, hope you are managing ok.
    Marilyn

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