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!

 

 

 

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