Tag Archives: pulmonary hypertension

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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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.

Plot twist…

When something goes wrong in your life, just yell “plot twist!” and move on.

WARNING: THIS POST IS DARK AND FULL OF SPOILERS. IF YOU ARE NOT COMFORTABLE WITH DEATH AND DYING, KEEP SCROLLING

I saw this quote the other day and it just so resonated with me. Up until now, this blog has been about our gorgeous son Thomas and everything being his mom meant to me. There has however been a plot twist even George R.R Martin in GoT could not have come up with. Yup, we had our very own version of Oberyn’s head being squashed like a vrot guava. Well that’s what it feels like to us, anyway.

I had met the man of my dreams (or actually my father’s dreams, hahaha), we made a beautiful baby and life was just beautiful. Well as beautiful as being knee-deep in nappies, snot, vomit and teething can be! While waiting for Thomas to be born in those last excruciating 41st and 42nd weeks of my pregnancy (yup, I went up until 42 weeks and 3 days!) we binge-watched a whole lot of shows.

Grey’s Anatomy was one of our favourites. Man alive, that Shonda Rhimes knows how to kill nice people and she’s so the queen of no-happy-endings. Should have had a premonition of things to come when our favourite show was a show where NOBODY gets a happy ending.

We were just starting to really enjoy the start of Thomas’ independence. Out of nappies, off the breast, no more teething and best of all, we could talk and reason with the little guy. We had just moved to a house near the beach in Muizenberg, where Thomas could have more space than the little Woodstock semi he was born in. We were gearing up for bike rides, long walks on the various trails in the Southern Peninsula and lots of swimming and surfing.

Enter pulmonary hypertension (PH) and the end of all that. The average PH patient has about 5 years of good years after diagnosis. Provided diagnosis was early enough. Jenna Lowe was an example of how little is known about PH and how often it is misdiagnosed and the treatment plan worsens the symptoms. Jenna was told she has asthma and to increase her exercise. The worst thing ever for a PH patient.

Elton was diagnosed the same year as when Jenna finally got her proper and devastating diagnosis. We had no idea of what we were facing but thanks to Google and Jenna and her family’s tireless efforts to raise awareness, we slowly realized that we were in a Grey’s Anatomy episode. One of those episodes people talk about for days and openly admit that they were ugly crying.

We are now on year 3.5 of the 5 good years after diagnosis and a lot has happened. We have new furniture (assistive devices) in the house and Elton has been medically retired. We have both had some ugly cries. Like the ones Grey’s junkies freely admit to on social media. We’ve had lots of trial and error sessions with meds, new meds, experimental meds, unregistered meds, whatever it takes to buy us more time.

Because there is no cure for PH, all we are doing is buying time. We have an amazing doctor in Dr Anthony (Tony) L. Biebuyck at Panorama MediClinic. He was the person who tested Elton for everything and wouldn’t settle for “just asthma”. Something about Elton’s symptoms bothered him and kept investigating until he found the cause. There are days I wish he is not such an overachiever 🙂 But that would mean my husband would be dead. Which I don’t want either.

Thomas can read now and knows that  I document his life online so I have to ask for permission  before I “tell my friends on the internet”. 🙂

So in the light of the plot twist and the reading child, I have decided to rename my blog. Welcome to No Happy Ever After?

I know. Dark right? But I warned you at the start of this blog. Something I will do with all the dark posts as we have been told to lighten up and go easy on the death and dying already.