Monthly Archives: February 2016

Things I still have …

Always look at what you have, instead of what you have lost. Because it’s not what the world takes away from you that counts; it’s what you do with what you have left. – Angel Chernoffi

 

We did our six monthly dance with the cardiologist and pulmonologist to motivate for continued use of the drug we import from Asia.

But there’s a bit of a plot twist.
Elton’s pulmonary artery pressure readings have been miscalculated by our cardiologist. A new cardiologist joined our team and his claim to fame is accurate echocardiogram readings.
The average pressure in a pulmonary artery is between 9-18mmHg. Anything over 25mmHg is classed as pulmonary hypertension.

Up until now, Elton’s readings were supposedly 50-55mmHg (already double what it should be).
His pulmonologist was always perplexed that his readings and symptoms did not exactly match. But because PH is a rare disease with so many unknowns, he was forced to work with what he had. 
And the dosages of meds he was on should have made more of a difference than it did, but it didn’t.

Enter new cardio and better readings and what we know now is that Elton’s real readings have been in the 100-110 mmHg range all this time (over four times what it should be).
Which is not good news in the greater scheme of things, but silver lining: it gives us more of a leg to stand on with the Medicines Control Council as we have to ask permission to import a higher dosage and also with our medical aid as we have to ask them to pay for the higher dosage.

We submitted our latest readings and motivation to the MCC and Med Aid. MCC gave us permission to import for another 6 months and Med Aid has rejected based on the fact that Elton’s numbers are higher. Not that I blame them as they’ve been told these meds will bring the pressures down and on paper it looks like it hasn’t.

Anyhoo, by now we have learnt to just yell plot twist and change direction when things like this happen. Pulmonary Arterial Hypertension (PAH) is an arsehole and I’m sure he (cannot be a woman) has many more arsehole moments for us. But, as the quote at the start of this post says… I’m looking at what I have instead of what I have lost.

I still have a husband. My son still has a father. He’s still capable of doing things for and by himself. One of the treatments for PAH is Viagra! Seriously… it dilates his arteries and allows more oxygenated blood to go where they are supposed to go. Erm… and leads to other magnificent things!

So, yes. We will be ok.