It’s been almost exactly four years since my Pulmonary Hypertension diagnosis. How do I know? Well I had my first and only angiogram on my thirty-eighth birthday, 21 May 2012 and my cloud photo album reminded me I took this photo four years ago from M floor of The Royal Hallamshire Hospital in Sheffield, where I was transferred to be investigated and treated at their very efficient Pulmonary Hypertension specialist centre.
About four years on and I am thankfully less monitored than I was at the start, my outpatient appointments were every three months, where I had ECG, chest x-ray and the shuttle walking test. Now my last one was probably in November 2015 and I’m not complaining. I also get yearly cardiac MRI scans and right heart catheterisation.
I have remained steady on oral medication; ambrisentan 10 mg and tadalafil 40 mg every morning along with aspirin and my various other tablets. When I say I remain stable, I mean my exercise tolerance is reduced by my shortness of breath due to pulmonary hypertension but not enough to need a blue badge yet.
I am unable to walk a mile without stopping and being short of breath multiple times and attracting the concerns of passers by. I don’t feel anything other than just needing to breath fast but to a bystander I appear alarmingly unwell, so I tend to drive everywhere I need to go, find parking as close as I can and take a gentle pace.
I have CPAP at the insistence of my Pulmonary Hypertension doctors and I have had stable asthma since my last and only admission in August 2011. I have regular CPAP review and checks and I see my practice nurse once a year for asthma and diabetes check. I also see a diabetic consultant once a year at my local hospital.
My biggest bugbear, at forty-two years of age, is taking the list of medications that I do. It’s a lengthy list, which I put into weekly pill boxes to make sure I take them all. This is also handy to work out which ones I’m running low on. Repeat prescriptions are a nightmare unless I pay attention and plan ahead. My pulmonary hypertension medications are not issued by my GP and so I arrange delivery monthly from Healthcare At Home.
My morning medications are photographed below. I also take evening medications which are half as many in number. Why does it bother me? I have been taking a polypharmacy of tablets since I was 32 years old and in the last ten years the medications have fluctuated and grown and there’s talk of more tablets being added to control my ever worsening diabetes as well as warfarin for anti-coagulation, which I have consistently declined so far.
I already have monthly liver function blood tests due to taking ambrisentan, the thought of daily or weekly bloods for warfarin is not an attractive prospect.
I am grateful that my pulmonary hypertension isn’t more serious and affects me marginally all things considered and despite the minor inconveniences of being on numerous medication I remain quite well overall and for that I thank the NHS.