Tag Archives: ph

Back to reality I go

Guys? I turned 40 last month and on the 1st of February this year I made a decision to consciously uncouple from Pulmonary Arterial Hypertension (PAH). I was heading for 40 and just finished the latest round of going through all of the tests the medical aid and medicines council need to help us beg for them to pay.

The news of wrong arterial pressure readings knocked us further sideways and I needed to uncouple for the sake of my sanity. Also, I had a desperate need to celebrate. And celebrate I did. #Oneis40 was my hashtag and I owned it. After 4 months of glorious uncoupling with wanton excess and indulgence, I now need to go back to tricky terrain.

Another round of tests await. Another round of having to go to the various medical bodies with begging bowl in hand. The double dosage of meds we were trying based on his new arterial readings has done nada in the last six months, so we have to go back to the drawing board. The drawing board that has loads of fab meds — in the US/Europe — but just two in SA. The weakest two. The runt of the litter, so to speak.

First on the agenda will have to be a heart catheterisation to definitively establish the pulmonary arterial pressure. Based on that, doctor will have to decide which meds to try next. Milpark hospital up north has been doing some great work with PAH patients and have helped patients get their hands on the super IV drugs we don’t get here easily. We might have to move the husband to Jozi but first things first… get into that heart and see what the real deal is.

So, yes it looked as if things were going fabulously well in our little world, but that was just because I was in deep denial and taking a break from carer wife-ing. That little break from PAH did me a world of good. Perspective and all that. I feel renewed. Energised. Bracing for what comes next.

Aluta Continua!

 

 

 

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.

 

 

 

Not this time, motherfucker!

“This is ‘year 17’ since I was diagnosed. Back then there were only two meds and you heard the ‘3-5 years.’ Don’t listen to statistics…! You can choose to lay down and let it control your life or you look it in the face and say ‘not this time’… I’m not giving up without a fight!” -Dawn Meador, PH Patient

The year Dawn is talking about  is 2015 and in her first world country, the treatment and management of PH has improved by leaps and bounds. Back in Africky, we are still in the only two meds and ‘3-5 years’ life expectancy trenches. And the meds available are the under-achievers of the PH meds. The guys who just about scrape through every exam and who will be voted “most likely to be forgotten”.

But it’s all we have and it’s better than nothing, right?

I’ve never been much of a runner. Tried running in my early 20s, joined a club, got the gear, etc. but never amounted to much. Which means in the fight or flight situation, I fight because I’m a crap runner. I fight tooth and nail, unless my survival instinct kicks in and carries my legs for me. Enter pulmonary hypertension and I have less teeth and nails thanks to all the fighting I’ve been doing.

You know that five stages of grief thing?
1) Denial & Isolation
2) Anger
3) Bargaining
4) Depression
5) Acceptance.

This is how mine goes.
DENIAL & ISOLATION: I don’t really do denial but isolation is my thing. Withdraw from everyone and everything and just hole up with the boys. Until people start commenting about not seeing you and is everything ok and you’re forced to socialize again.

ANGER: Why? Why him? Why me? Why my child’s father? Again? Really? You’re really going to take another of my persons?

BARGAINING: I’ve always been a crap haggler. Stallholders see me coming and know I will pay the first price they give me. I don’t do bargaining.

DEPRESSION: I think I’m just coming out of this phase. Been deep and dark and I have spoken to close friends who were great with talking me out of it. I went to some pretty scary places in my head, but I think I’m mostly back. Thanks for baking cupcakes and bringing lots of wine. You know who you are.

ACCEPTANCE: NOT THIS TIME, MOTHERFUCKER. My husband does not have 2 years left. He has 20 plus years left.