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I would really like to make contact with anyone/organisation/hospital who have my condition

deekaren52deekaren52 ListenerPosts: 2Member Listener
Hello my name is Dee. I am so pleased to find this forum.
I have a parilized left hemidiaphragm which was finally diagnosed about 7 years ago after many visits to hospital not being able to breath and the clinicians trying to treat me for Asthma! I now appreciate how difficult it is to diagnose this condition.
In 2007 I contracted Mengicoccal Septacemia and was put into an induced coma on life support for some 18 days and a further 6 weeks in hospital. I had no breathing problems at this point or for the following 4-5 years. Eventually after many visits to A & E with breathing problems they did the ‘sniff’ test and it was obvious that my left diaphragm did not move. Eventually it was decided that one of the lines put into my body to keep me alive whilst on life support touched my Phrenic nerve and over time the nerve became broken.
i would like to hear from anyone who has the same problem and how it affects their lives, how they manage their lives. Look forward to hearing from you. Cheers Dee 




Replies

  • steve51steve51 Disability Gamechanger Posts: 5,818Community champion Disability Gamechanger
    Hi @deekaren52

    Good Morning & Welcome 😇😇

    I am one of the “Community Champion’s” on here.

    We are a very helpful/supportive bunch here on our Community!!!!!

    I’m very very sorry to hear about your ongoing problems.

    I do hope that one of our members can offer you some help/advice???

    Please please let me know if you have any problems????

    @steve51 ;


  • Chloe_ScopeChloe_Scope Scope community team Posts: 4,488Administrator Scope community team
    Hi @deekaren52 and welcome to the community! Thank you for taking the time to share this with us! We don't appear to have anyone of the community who has your exact condition, so your insight is extremely valuable! @Christinan has spoken about one side of their diaphragm not working on the community too. We hope you will be to connect with like-minded people and please do let me know if there is anything I can do to help!
    Chloe
    Online Community Officer
  • deekaren52deekaren52 Listener Posts: 2Member Listener
    Hi Chloe
    Thank you for your message. I have had great difficulty getting any information about my condition and have no one I can speak to about this condition. All I have read is that Phrenic Nerve Palsy occurs during cardiac surgery when, by accident the Phrenci Nerve gets damaged.
    i would really like to make contact with anyone/organisation/hospital who have my condition or have information and would be very happy to help in any way i can.
    regards
    Dee

  • Chloe_ScopeChloe_Scope Scope community team Posts: 4,488Administrator Scope community team
    Morning @deekaren52, it must be hard to not have anyone who can relate. Here on the community we may not be able to relate to everyones condition but a mutual understand of what it's like to live with a disability enables us to help one another. Please have a look around and I hope you find things that are of interest to you :)
    Chloe
    Online Community Officer
  • Antonia_ScopeAntonia_Scope Pioneering Posts: 1,783Member Pioneering
    Welcome to the community @deekaren52 ;)
  • Beverley_ScopeBeverley_Scope Pioneering Posts: 77Navigate Pioneering
    Hi @deekaren52

    Welcome to the community.

    If you follow the link below you may get some more information on your condition.
    It details causes, symptoms and treatment.

    https://www.averybiomedical.com/phrenic-nerve-damage-causes-treatments/

    Hope this helps,

    Beverley
    Beverley Davies
    Parent Advisor
    Navigate
  • simoncsimonc Listener Posts: 4Member Listener
    deekaren52,Ive had the same problem for the last 9 years .Phrenic nerve damage left side .Mine was caused by a massive tumor in my chest,open chest surgery,loads of chemo or radiation,take your pick.The problems it causes are exhausting as you are no doubt aware.Not being able to lie on my back and breathe go in water past my waist,carry anything remotely heavy are bad enough but being aware of every breath i take,having to remember to take a breath and the feeling of not being able to force enough air into my lungs are downright scary.If youve got a hundred grand to spare I believe theres a Dr Kaufman in California who can repair the nerve.Good luck 
  • Chloe_ScopeChloe_Scope Scope community team Posts: 4,488Administrator Scope community team
    Thank you for sharing this with us @simonc. How are you doing at the moment?
    Chloe
    Online Community Officer
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