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.
Whatever people say about he NHS, I have always found them to be very efficient and get the job done when the chips are down.
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I agree. I cannot fault the care I get and when I was really ill they stepped up every time.
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I’m glad you fell you are in safe hands. My family and I were just discussing the terrible lack of good medical care in India and why that is. I don;t know anything about the NHS but it sounds great!
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Accountability and safe practice among doctors and nurses I think are central. The care across the country is standardised.
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That’s great!
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That kind of care is priceless. So glad you have them to take care of you. I’m happy you are holding off the warfarin, with all the medication you have to ingest, adding one more that will probably bring about more tedious tests than you already have, is not an exciting prospect. I’m hoping you will keep it at bay. Is the worsening diabetes due to some of your medication?
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They tell my diabetes will worsen with age and I am quite insulin resistant too. It’s all in my genes, I have such a strong family history of diabetes. Fortunately I think I’m not looking at any new meds for a while.
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Thank goodness no new meds for a while. You have plenty to keep you busy.
Diabetes is something that always concerns me as it runs very strongly in my family and my husband’s family.
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I was diagnosed incidentally when I went for pre-op bloods when I was 32.
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Glad to hear you feel satisfied with your medical care, and that you’re keeping a good attitude about your health challenges. You seem to have things under control very nicely. I have one of those pill boxes too and you just reminded me I need to go and refill it. I don’t know what happened, but I’m glad I’m receiving your posts again. ( :
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Thank you, its nice when I feel just prodded and interfered with enough to feel well. I have three pill boxes now, but I wonder if it will ever feel less of a chore filling them.
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I feel like I’m refilling mine every minute!! ( :
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And constantly requesting refills.
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