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!

 

 

 

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.

When the dam(n) wall threatens to break

The past few months have been some of the most difficult months I have experienced. It has been filled with the reality of Elton’s Pulmonary Hypertension hitting us hard and having to wrap our heads around our new normal. I won’t mention the things we’ve had to do/buy/let go/revisit to make our new normal work for us, but suffice to say that it has been tough. Relentless. Sad.

On Tuesday I had to fetch another assistive device for my 39 year old husband and after collecting it and driving back to work, I had one of those moments where your breath catches in your throat and the tears are threatening to spill. My first instinct was to stop the car and cry. Let it go, as Elsa in Frozen says, but I’ve been in a holding pattern for months now and I knew if I let it go on the side of that road, they would have to come scrape me up a few hours later and possibly book me in at some institution. I cannot afford to let it go now. I need to plan this letting go session carefully on a day when I’m home alone or something and let the dam(n) wall burst and hopefully recover by the time my roomies are back.

My internal voice can be quite harsh and she got me to snap out of it by reminding me that:
a) My husband is still alive
b) There are people so much worse off than we are
c) We have a great med aid that has given us everything we need (except the super-duper expensive (50k/month) meds that would considerably lengthen Elton’s life expectancy
d) My husband is still alive and capable of many things (R18) 😉
e) We have family and friends who are with us on this rare disease journey. Some of them are only starting to realize the enormity of the situation and some were there from the get-go.

A very good friend of ours, was so awesome at the start. When we were still trying to wrap our heads around it, she said: “Poensie, ek verstaan dit nog nie so lekker nie, maar dit klink verskriklik. Weet dat ek hier is vir jou en ITlaaitie. Wat ook al. Hoe ook al.”

And we love her eternally for that. That is all people on a rare disease journey actually need. People to say: This sounds and looks hectic from where I’m standing. I don’t fully understand it, please will you explain it to me until I get it and of course I’m here whenever, however you need me.

And in my off-guard moments, I do find myself railing against the universe/life/circumstances and asking the age old Why? Why me? Why him? Why us?

I saw a post somewhere the other day where a rare disease patient was saying Why not me? She went on to say there must be a purpose for all her suffering, etc but sorry, I’m not in that Zen place yet.

So until I can have my dam wall breaking moment, I guess I will be very unZen and rail and gnash my teeth and strike out and do whatever it takes to get me through the day. Thanks for listening…