Pulmonary Hypertension News Forums Forums Research and Development New Findings on Pulmonary Hypertension due to LHD and Exercise

  • Julie Shrive

    Member
    October 27, 2018 at 4:43 am

    If they listened to the patients in uk as legally should via NHS Constitution I was telling them this before even knew what it was .How many have died earlier than should as a result? PH/heart failure/ cellulitus lipo/lymphoedema/obesity it is proving to be left festering since birth one of first on penicillin & pill My breathing & Function was as classic symptoms [ going upstairs] yet Dukes Analysis ignored .

    And its relation to genetics family history of most conditions heart, cancer, hormonal, autoimmune, obesity as family of pharmacists & teachers.Worse still my Mother had severe MID vascular dementia with TIAS that effected Function & Cognition .Mine too with the cardiac arrest 13 yrs ago & targetting of Function when antibiotcs witheld & cultures refused unless GUM clinic .

    Finally on registering for stem cell trial at Brompton [ cardiothoracic] 3yrs ago they ignored the their trial saying dysponea – later PH only found Dr Coghlan because alarm went off & Medtronic device he was fitting in Cardiology at Royal Free in London having to travel 100 miles each way 1-2 times a year to be bullied by the negligence a different Registrar each time recording regurgitated history with a few false facts re assistance & monitoring when informed would be the microvascular .

    However did get diuretics which helps the primary lipo-lymphoedema/obesity stage 2 that there is no assistance with or provision for ignoring my predisposition re cancers/ heart /stroke hormonal/autoimmune , rheumatoid /obesity /diabetes 1 / CFS/ibro trigger point weaknesses .
    Am I a guinea pig do nothing see what happensas Neurologist put re abnormal EEG ?

    I am extremly upset as have also been turned down after waiting over 10yrs by Charity Compassionate Friends recently for Bami heart cell trial Barts because of underlying conditions not fully controlled causing the problems with the chronic utis acute 3 weekly who saw Prof for for over 30 yrs re research re utis 1969 Prof Moorhead [ KIDNEYS & Brumfit – disability? spina bifida /abnormal EEG? & witholding of targeted /cultured antibiotics by using not up to date microscopes these neglected underlying conditions & criteria ???!!! Is it just it just endemic ageism & can’t get insured for Private as need sedation with every procedure even teeth.?
    The only answer appears to be a medical detection dog but criteria yet again will exclude ?Even though need arousal when get pylonephritus urosepsis symptoms !Will I single solo at 71 yrs rot in my bed because of remits policies & procedures that are neither appropriate, ethical or reasonable ?

Log in to reply.