So, we're home after our visit to the doctor, at IJN. I'd say it was a good visit, and I am doing well. Happiness. And the doctor smiled at me. Again. Hahahaha.
My blood-test results are fairly good: There is a heart enzyme that is now normal, and that's really good news. It was wayyyy off the charts for a long while, and that it is normal now means that my heart is happy, and is no longer stressed.
But, my potassium levels are up. This is probably the consequence of being on Spironolactone (a diuretic), so I've been taken off it.
Also, my cholesterol reading: Although it has come down from the last time it was read, it is still outside 'normal' and that is not good. So, I shall now have to bite the bullet and take Lipanthyl. Fingers crossed this does the job. Mr doctor-man is threatening to put me on a statin if the readings don't improve! Yowzer! I've read enough about the ill-effects of statins to not want to be on them unless I absobloominglutely have to!
I had some questions for him, and these are the answers:
- do I need to take my blood pressure daily? That's not necessary, but it would be good if I can; to keep track of how I'm doing.
- how do I monitor myself between visits to see you at IJN? Generally, if I feel all right, it means that I am doing all right! Hahahah. Howz about that for an answer?!
- do I need to see a GP between visits - so that he can monitor how I'm doing? Nope. If I am not ill, there is no need to go to a GP. (That's good news, because GPs are full of people who're coughing and sneezing and being generally ill.)
- when do I need to haul myself to Emergency? What symptoms do I need to be wary about? He laughed when I asked this. Ok, I lie: He smiled more broadly than he was already smiling, is all. He didn't think that that was going to be an issue now. Even if I have the flu, or a cold, a visit to the GP would be enough. But, I'd need to say that I have IPAH, and then they'd know how to take it from there.
- can I fly? I want to visit my daughter in London. Yes, I can - and I won't need oxygen. How cool is that?? He said that if I can walk for 20 minutes, without feeling breathless, I will be fine in the air. On my broom, or on a plane!
- I walk, and that's all the exercise I do. How much exercise is 'enough'? This is really up to me, he says. If I can walk continuously for 20 minutes or so, I'm doing all right. I need to worry only when/if I get breathless when I walk.
I think I am doing all I can to meet this head on. I am trying to walk every day, and I am trying to make this walking-in-circles last for at least twenty continuous minutes. Longer, if I am feeling all right. Sometimes, on days when I don't feel too good, I break that twenty minutes into two ten-minute sessions. But so far, I haven't had to do that very often.
So, I am doing well.
He is trying to keep my heart and arteries healthy - that's why he's adamant about bringing my blood cholesterol reading down to within the normal margins.
Very gently, he explained - again - that this is a disease about managing the symptoms, and not about securing a cure. Essentially, it is a disease of the lungs, and the pressure in my lungs is high, and will remain high. The sildenafil I take helps relax the blood vessels in the lungs, and eases the flow of blood into it. This in turn eases the pressure on my heart: it doesn't need to pump so furiously to get blood into my lungs. Like it had been doing before the sildenafil - which led to the enlarged right ventricle. At some later point, sildenafil alone will not be enough. Then, he will need to add on more medications to keep this happening. For now, it's all good.
Every time I have an appointment, I'll need to take a blood test (to check that everything else is working; and that my heart's hormones are fine), and do the six-minute walk. The results from both of these tests will give him an idea of how I'm doing. If I am not breathless, and I can function all right - well, that will be my barometer that all is well.
I think that today's visit was a good one. And, I'll see him again in four month's time. I should be back in KL by then 😊
