Four months ago, Ivy went for an echocardiogram because she had a fast heart rate and a murmur. It was discovered that she had two nodes in competition for the sinus rhythm. Along with this they also found some pulmonary hypertension.
It was not too bad, just a little high and after much discussion it was decided, amongst the doctors, that it was transient because of the pneumonia she had.
Apparently it can happen.
There was talk about chronic lung disease (bronchiectasis) and cystic fibrosis and a few other things that might cause the pulmonary hypertension but the sweat test was negative and seeing a respiratory doctor in a small rural town in NSW, Australia is not an easy thing, so we needed to wait.
Bronchiectasis, in immune deficient people, is apparently quite common because infection is not treated aggressively enough and so permanent damage can occur.
Still the doctors all thought it was unlikely and put the coughing up of blood and disgusting junk down to the last terrible bout of pneumonia.
Even 12 weeks on.
As a matter of course, there was a follow up echo organised and it just so happened that our appointment for the respiratory doctor fell on the same day.
We were all expecting the echo to be normal.
All of the doctors and me too.
It’s not okay though.
The pulmonary hypertension is still there.
It is no worse and it has not altered her heart
but it’s still there,
it’s the stick around kind.
Most things I read about pulmonary hypertension are scary.
Reduced lifespan, high medical needs, oxygen, heat failure, death.
There is no cure.
Suck your breath in kind of stuff.
Borderline pulmonary hypertension has earned Ivy a cat scan of her lungs because now, the heat is on to find the cause.
Obviously it was not the last bout of pneumonia.
I’m trying to look at the bright side – there has been no progression of the disease and aside from the tachycardia she is well.
If they can find the cause then the PH can be slowed.
At the moment she is stable and there is still talk that it may resolve.
The cardiologist and the respiratory doctor both agree that any infection in her lungs will likely cause the pressure to increase and we don’t want that because that means putting her heart under more strain and that is how things worsen.
So my goal, for now, is what it has always been, scary diagnosis or not;
to keep her happy and healthy.
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