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6 Month Checkup at Liverpool

November 17th 2017
Today I was at Liverpool Heart and Chest Hospital for my 6 month follow up. I had an ECG, an Echocardiogram, and then I went to see Dr Todd. My ECG today shows that my ventricles are starting to struggle more and can't get as much oxygen around. A CT scan that I had done while I was admitted in August shows that I have enlarged lymph nodes in my chest. I've done a bit of googling and there are a few things that can cause enlarged lymph nodes in the chest including sarcoidosis and an infection. The doctors had a discussion and they think I should have them biopsied to check they're nothing scary. They're pretty confident that they're only swollen because of my heart but they have to tell the transplant team about it in case they want to investigate. 
I had my DNA tested a while ago (it takes about 4 months to come back) so today I saw the genetics lady at Liverpool, Dr Mckay. She said they've found a faulty gene in me, so my mum and dad need to have their blood tested also and if it's not in either of them then they're pretty sure that's what's caused the problem. The gene is responsible for making the proteins in your muscles and if my mum or dad have it then that's not what's caused my issue because it'd be very unlikely that they've gotten to their age with no problems. Hopefully my results will be back around the time I have my pre- transplant assessment.
I had to fill out a huge form this week that came in the post from Wythenshawe. I had to fill out all my dietary needs and how often I eat etc. It also wanted to know what my attitudes towards food are, to see whether I'll emotionally eat after surgery because obviously being over weight is very bad for your recovery. Looking forward to my appointment at Wythenshawe, I'll either find out I'm not going on the list yet which is great or I'll be on the list which means I'm getting a heart soon! It's only the waiting that I hate!

I probably won't have any news until I've been for my assessment on 13th December but please enjoy reading my blog and leave me any questions or comments! I'd love to hear from other people in a similar boat to me :)

Comments

  1. Unknown4 December 2017 at 07:02

    You are an incredible and beautiful young lady Charlotte. I enjoyed reading your blog and will continue to do so. Much love, Barb and Dave

    ReplyDelete
    Replies
    1. Charlotte4 December 2017 at 12:27

      Thanks so much Barb and Dave! I hope you have a wonderful christmas xx

      Delete
  2. Lee Russell5 December 2017 at 05:38

    Wow Charlotte - didn't realise things were this progressive in terms of how soon you might need a transplant - You're so incredibly brave and an amazing person - I'm proud to be your godfather - Keep smiling and keep this going - Its great for letting me know how you are getting along - All my Love - Lee xx

    ReplyDelete
    Replies
    1. Charlotte5 December 2017 at 05:57

      Yeah no one expected it to get worse so quickly really, but I'm looking forward to feeling better! Thanks so much for reading!! xx

      Delete
  3. Unknown7 December 2017 at 02:30

    Charlotte,

    You are so incredibly strong! Your outlook and attitude towards your condition is inspiring and will truly lead to a positive road to recovery once you do in fact require the transplant. The universe will bring good things your way, I know it!

    Love Amy xo

    ReplyDelete

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