153 ~ Shattered dreams – Part 1 ~

It all commenced 8 months ago when our hopes were evoked…

NOVEMBER 2018

Coupled with hope and prayer, I left no stone unturned in trying to search for cardiopulmonary expertise, despite being told I should forget about it because there’s none in the province I live (Gauteng)

After this episode

https://kayborninmay.wordpress.com/2018/10/24/102-born-anti-norm/

For the second time after many months I put out a story on Instagram requesting for cardiopulmonary specialist recommendations… Doubting that there will be any positive response, but curious to see if after a few months there’ll be new suggestions since interacting with new people..

A renowned lady with unimaginable strength responded, asking if I had already consulted with Dr so & so.. To which I replied in the negative. I was not told about this specific Dr previously. One of a very high caliber in terms of expertise and thus far, the only known experienced PH professional in Gauteng.

She kindly offered to make an appointment on my behalf so I could gain clarity with regards to the tests and question marks that were left halfway…

Musing over the fact that I only asked the question on a general note, and didn’t go personally to ask her for a Dr or to book an appointment… This should surely be unexpected help from above which I gladly accepted with appreciation..

A few days later she messaged to inform that the Dr was fully booked (not sure until when) but perchance there’s a cancelation, they will fit me in..

Family and friends were elated and we viewed this opening as an answer to our prayers…

I did not rush or become agitated at the lengthy wait because my heart was at total ease with the following belief

It will happen when it’s meant to be… After my growth expands further.. When I am filled with sufficient strength to deal with different and perhaps more harder stages of my journey…

In this way the wait continued..

JANUARY 2019

We considered taking a flight to Cape Town to once again consult with my neurologist.. But the flight was of great concern as related previously in the beginning of 2018..

Upon searching and asking around, I happened to read an update by a Cystic Fibrosis fighter @fight_to_breathe in USA who posted about a particular test termed as a

High Altitude Simulation Test – also known as the “Fit or fly test”

In simple words.. It’s conducted to ascertain whether a person requires oxygen in flight or not / how much. As well as to assess the heart and lungs reaction by simulating cabin pressure..

(Simulation means imitation of a situation or process. Example – Simulation of blood flowing through arteries and veins)

The most important question – Will my heart & lungs remain stable and for how long? More so, with Pulmonary Edema, & the risk of pneumothorax (lung collapse) etc

Usually you’re permitted to fly on condition of everything being under control, whereas my situation changes within minutes. It’s unstable & totally unpredictable. I can be texting someone normally now & fainting or struggling to breathe after the next few minutes.

(Another article will be shared with regards to flying with cardiopulmonary conditions)

At that point a part of me said take the leap but we also required sufficient medical back up such as letters and a write up by a professional pertaining to my condition. Else, air authorities do not approve the request.

Upon enquiry from many physicians and Dr’s in various fields, not one could offer help or refer me to someone to conduct the test..

Most were unaware such a test exists!!!!!! Being at a particularly fatigued point from continously searching around yet reaching no conclusion, it’s only natural that I lost my patience at that moment & became utterly frustrated with almost everyone here not knowing anything.

Trust me, sometimes the constant battle for advocacy, health rights and knowledge empowerment, takes a toll on ourselves more than we realise..

While at the peak of frustration I stumbled across a poem (song) of Zain Bhika titled: حسبنا الله و نعم الوكيل (God is sufficient for us and the best of guardians)

I listened to it repeatedly as I attempted to expel the hurt which had overtaken me due to the lack of knowledge and resources…

As my soul slowly renewed its sense of calmness and trust, the following quote emenated from my deepest recesses

Amidst the tiresome search.. Another kind & helpful lady saw the question and asked for an opinion from her daughter who’s studying in Cape Town..

God bless her ABUNDANTLY 💖💙

She reached out to assist to the best of her ability. Her daughter generously provided feedback with contact details of specialists in Cape Town whom we could contact and seek advice via a local physician..

When a local physician readily agreed to assist.. We were eventually led back to the same Dr with whom the first lady requested an appointment…

In this manner, our hope was reinforced by 2 people who did not know each other but directed us to one Dr..

Viewing it as

A definite sign

From the divine

And help sent after approximately 3 years.. We eagerly anticipated the confirmation of this long awaited appointment…


(If you are aware of extra knowledge regarding this test or had it performed here in South Africa.. Kindly comment or share your experience privately – kaymunchi@gmail.com

Shukran / Thank you

Light and peace ✨)

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