It started with a cough that wouldn't go away. And, a voice that was so hoarse, it sounded strange in my own ears. And then, there was the high blood pressure - though, at the time, I didn't know it was part of the mix.
I went to my local GP, and asked for help. My lungs seemed clear, he said, but he decided to put me on a 'strong' antibiotic, and asked me to up my asthma medication (the inhaler), to twice a day. I wasn't happy, but I agreed. I'm never happy when I'm put on antibiotics, but I felt I had no choice, here.
So: Antibiotics, inhaler, hbp medication. Draw an unhappy face for me.
But the antibiotics didn't work, like it usually does. And with the echo of my daughter's see-a-specialist-ma in my head, that's just what we decided to do.
Dr Usha came to mind. She is the only doctor I know who treats asthma patients. And I only know that because her clinic is next to her husband's - who is my orthopedic doctor. Random, much!! But, Dr Usha listened to my lungs and realised that they weren't quite right. 'Crackling', that's what she said she heard. I also had reduced effort tolerance: When I walked, or climbed a slope or stairs, I had trouble breathing. And, I remember describing it this way: "When I struggle to breathe, I feel that I am getting no oxygen into my lungs". (My description is accurate. Later, when they do a test of the oxygen level in my arterial blood, it will be shown to be lower than normal. Much lower.) So because of these sypmtoms, along with the edema in my ankles, she suggested I come in for some tests. Reason for admission: heart failure.
A heart specialist - Dr Teoh - was brought in because it was also about my heart.
I was admitted to hospital, and over two days, the tests happened. I didn't know it at the time, but these were 'elimination' tests - because that is how pulmonary hypertension is diagnosed. It started with a guess - so clever of Dr Usha - and they needed to see if that guess was right. And if it was, to determine what type of pulmonary hypertension I had.
There are many kinds of PH, and mine is the one with no obvious cause. It remains a diagnosis of exclusion,
Google says: IPAH - idiopathic pulmonary arterial hypertension is a rare and progressive disease that affects the heart and lungs. From what I've read, diagnosis is a bitch. Many of the cases I've read about took years to be diagnosed. They were treated for asthma, or told to go home and start exercising, and to lose their excess weight. And how many of us don't carry around excess weight? And how many of us don't know we're lazy arses and need to exercise more?
I was admitted to hospital in early November 2016. By Christmas, I'd been told that I probably had IPAH. That's two months. That's quite brilliant, actually.
To confirm diagnosis, I needed to see a specialist in IPAH. And there is only one in Malaysia: Dato' Dr David Chew, in IJN (the National Heart Institute). It was time to sit and wait - another month or so - to wangle an appointment to see him. January.
In the meantime, I was put on a host of pills and puffs: HBP and asthma medication. The result, my blood pressure dropped drastically, but my breathing improved.
Low blood pressure is another bitch. You need to be always cognizant that you have it, and when you feel woozy (yes, that's a technical term!), you sit or lie down. And that is just what I feel I did for most of those two months, while I waited for my IJN appointment.
So, more tests awaited at IJN, and I see the specialist, and he says that it's probably IPAH - but he needs to perform a heart catherisation to conform it. That's more-or-less like an angiogram, but it would measure the pressure in my heart, lungs, and my pulmonary artery.
Why they need to do this - from an article I found:
Pulmonary hypertension is a lung disorder in which blood pressure in the pulmonary artery rises above normal levels. The pulmonary artery is the blood vessel carrying oxygen-poor blood from the heart to the lungs. Pulmonary hypertension is present when the mean pulmonary artery pressure is greater than 25mmHg at rest or 30mmHg with exercise. This abnormally high pressure (pulmonary hypertension) is associated with changes in the small blood vessels in the lungs, resulting in an increased resistance to blood flowing through the vessels. This increased resistance, in turn, places a strain on the heart, as it has to work against a higher resistance to pump blood to the lungs.
(from here)
And, while they're fiddling around in there, in my heart and lungs, they'll 'test' for the right medication that works to bring down the pressure.
Another hospital stay - five days, this time - and my diagnosis is confirmed. IPAH.
I am put on the correct medication, and here I am today. I've seen him again, since, and I am doing well. Except for my cholesterol, so I need to see him again - in September (blood test) - to see if that reading has gone down. He's worried about blockages, which I guess I do not need to add to the list of things that are already wrong with me.
From start to finish, it took four months. Bloody brilliant! And this is in rural Malaysia!! Hahahah. I am so blessed, and I know it 💖
