1968 – born “blue baby”.
1972 – first heart operation to correct coarctation of aorta.
1988 – 2nd year student nurse. New ‘murmur’ found: Pulmonary hypertension. Advised not to get pregnant – ever or it might kill me! May need transplant one day. Completely asymptomatic. No PH treatments available.
1990 – pregnant (with Evan) born a very healthy 4lb 1 oz at 32 weeks after 12 weeks inpatient stay with heart failure which resolved on delivery.Told definately no more babies.
1997 – spontaneously went into atrial fibrillation, pulmonary embolism.
1998 – internal bleeding from high INR due to warfarin and other tablet interactions.
2000 – insertion pacemaker followed by ablation of AV node to calm heart rate down from 170bpm!
2002 – short of breath- told heart failure/pulmonary hypertension-new drugs which made things worse.
2004 – asked to discuss transplant with family, then told NO WAY- alot to go through and would need a 10 year of to fall off his bike to be donor so unlikely to receive donor due to my size, make the most of my family!
2004 – discovered PHA (Pulmonary hypertension association) website via google search. Contacted nurse consultant. Booked my trip of a lifetime (travelled alone to African safari in Zambia).Changed consultant and pestered until referred to Sheffield PH unit.
2004 – started bosentan, referred to MAnchester for talk about heart/lung transplant- new lease of life, back at the gym so transplant deferred.
2005 – breathless and bloated again- viagra! that did put a new lease of life in me! again gym every morning at 6. Went back to Africa!
2007 – very slowly worsening again,had to stop gym,going for walks. On maximum treatment at time.
2009 – weight loss, worsening shortness of breath, extreme tiredness /fatigue. Referred back to Manchester-yes needed operation but best to refer to larger centre where chances of donor greater. Mesenteric angina started. Development and worsening of CKD (chronic kidney disease)
2010 – trial nebulised iloprost, transplant assessment at Freeman Hospital Newcastle. Trial IV iloprost. First witnessed episode mesenteric angina, acute kidney injury (acute renal failure), very low BP
2011 – further episode AKI- fluid restriction to 1000mls per day, no notable improvement in function /reduction in supportive therapies (water tablets) with iloprost review Newcastle: time for transplant.
June 2011- accepted by Freeman Hospital Newcastle for heart and lungs transplant. Had reached required weight!
August 2011- Freeman hospital considering ‘bridge to transplant’ surgery but on balance more risks than transplant.So leaving option until ’emergency’. Involved ‘artificial heart” and me carrying another 2kg battery pack!!
August 2011- Admitted PH Unit Sheffield. Very poorly, 11 days in ITU, dialysis, renal and splenic infarction, mesenteric angina,Hickman line completely blocked. Further strict fluid restriction, reduction in most medication to stop blood pressure dropping, advised “Keep quiet and stay calm”
September 2011- Well enough again and tissue typing tests through so officially added to ‘Active’ Transplant waiting list.