Pacemaker put on hold?

Went to my cardiologist today to talk over when they will Pace and Ablate? But they have looked over my Lung consultants letter and decided that they need to look a little deeper into my heart from another angle as they are not happy with my lung function 57% upright 12.5% drop when flat! I have been experiencing more pains in my chest and they are now unsure if that is PAH or Angina or both. So will have to self experiment with my nitrate spray. I am being passed on to another cardiac specialist that has a high level of heart imaging experience because of my iodine allergy. My next problem is my GP who does not want to come off the path that all my problems are because of my heart even after my GP spiro test and my Hospital Full lung function test showed RLD, Fibrosis and PAH?

My consultant closed with we might find out what is causing this and you might see an improvement or that you will just have to live with it! :(

9 Replies

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  • Sorry to hear you are having difficulties- keep pressing for all the tests so they can find out what the problem is and don't take to much notice of"you'll have to live with it!"

    We know this but we also want any relevant treatment!!

  • I do not mind the "Live with it" as long as it is based on the facts! I feel that with me having multiple problems it is hard to collate an answer?

  • You have rough stuff to deal with, hope you find some answers and as Rosy says keep pressing for all the tests. I do wish someone, somewhere would take a medically holistic view as I am sure that whilst all these specialities can give expertise is there anyone out there who takes on overview? Not surprising you are down but hope your spirit stays strong, very best wishes.

  • Thanks, What has made it worse the lung letter has all the dates wrong they say my PAH was diagnosed in 2012 but I had the test 3 months ago. I am moving house soon hopefully and not sure if I should change doctors (better the devil and all that) One thing I am sure of my breathing has got worse every year for the past 2 years

  • Keep pressing Offcut and, if need be, write to the last consultant giving your history- say you noticed some dates were wrong- and say how you are now and that you would like some re-assurance that all tese problems will be looked at.

    It is hard for them to ignore a letter whereas with an appointment they don't have time to consider the whole picture sometimes- also if there is something they are unsure of, with a letter they have time to ask other colleagues- hope you get the help you need- keep asking!!

  • I called the secretary to see how they have been so wrong on the dates etc. to be told that she will listen again and see if she miss heard? the fact there are so many mistakes that it makes me think is it me that they are talking about?

  • I get so annoyed when they can't do the admin, half my notes are missing from my file every time I go to the local cardiology and why in this day and age are they still huge paper files?! I now always get copies of everything, I keep my own notes with dates etc and produce it every time they say 'it's not in the file! My GP practice on the other hands is brilliant. My EP just sent me a bill for a bill I paid, and have a receipt to, in Feb. so all I can say it's not only the NHS. Keep pressing Offcut and ask for it in writing, an email is a good record.

  • I ask for all letters to my GP to be cc now. It took nearly 2 years to get my GP to look at my latest lung issues. They seemed blinkered to everything being because of my heart condition. Even though I was in ICU for 32 days in 2008 with lung failure?

  • You really have had poor service, not surprised you get so down and fed up with the,.

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