158 ~ Shattered dreams – Part 5 ~

Holding 5-6 pages of the ECG results, doc begins by saying:

“Alright look! She’s seen lots of Dr’s, done lots of tests, but for me, I’m worried looking at this ecg, there are a few things we have to exclude. The ECG changes suggest she might have a hole in the back of her heart between the 2 upper chambers. This defect is called an Atrial Septum Defect & cannot always be seen on an echocardiogram.

Atrium – 2 upper chambers.

Septum – a partition separating two chambers.

“It can be that you’re born with it (congenital cardiac defect) but the symptoms manifest at a later age. Apparently, symptoms of (ASD) Atrial Septum Defect don’t begin until you’re around your thirties but it can begin earlier.”

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(In simple words: Basically this type of disconnection takes oxygenated blood to the right chamber, instead of the left chamber… And mixes with deoxygenated blood after it’s just been oxygenated!)

And that’s how the multistage treadmill / cardiac stress test presents with clinical signs of both these combined defects. Symptoms vary according to the severity of the disconnection and can include the coughing up of blood secretions in addition to respiratory issues.

If it’s partial it may not manifest early. Like a car, when it’s new, everything goes well. Afterwards it gives problems”

This link explains it more detailed if you’d like to read

https://www.mayoclinic.org/diseases-conditions/partial-anomalous-pulmonary-venous-return/cdc-20385691

(After absorbing the aforementioned information, I wondered if it’s possible for this type of disconnection to occur also due to Dysautonomia 🤔 Just like the mitral valve also becomes prolapsed due to Dysautonomia)

At that moment I sat tongue-tied, rooted to the chair, trying to absorb a diagnosis I did not even know existed, let alone expected.

A revelation of disbelief tangled with relief that I was finally being led onto a good track, regardless of the diagnosis, which I can deal with at my own pace as things take their course. At least we now know what is clearly happening instead of roaming about half in the dark while others play guessing games..

Note: It’s not about being relieved to be diagnosed with an illness or a cardiac problem in this instance. Its to have a name put onto an illness previously vague, a route to step on & action to take for symptoms which are already occurring & progressing.

Dr then marked 3 blood tests & scratched out a few that would be of unnecessary cost.. Saved me precious blood + money 😂😂 and told us to go for the CXR as well.

He continued further by saying, he and Dr Andrew already discussed me in the morning. Their communication is so efficient!! Unlike my experience at Charlotte Maxeke where there was constant miscommunication.

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“Now since seeing the results, I mean it’s ridiculous for her to continue the way she is. We can’t stop here and there’s no solid action we can take without investigating further. We need to do more tests. A Coronary angiogram (Cardiac catheterization) and a CT chest scan because the other CT you done was 2 years ago.

We can decide from there onwards depending on the results. The angiogram might or might not show something.. But we have to do it, to know which route to take next because these defects require surgery. It can’t be corrected with medication”

Kindly & sincerely, he discussed howto work out the costs…“My cost will be minimal. In fact, I’m not worried about mines. The high fee is clinic charges, that’s the only problem”

Repeated that a couple of times – which gave a clear impression that he’s not working solely to chase huge. sums of money. He’s practicing tomake a difference and help people to the best of his ability regardless of the money.

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He questioned dad once inquiring if he saw the blood? So dad confirmed by saying:

“Yes, yes! I’ve seen it numerous times with my own eyes.. Fresh, thick / pink sputum, and dark red blood.”

He nodded with greatconcern! Then called up the cath department for quotations on the tests & told the person who he booked the angio with, to get me in asap & not waste his time.

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He also apologized by saying:

“I’m sorry I can’t take you through the public medical sector route. They totally messed up now. At one stage Baragwanath had the best cardiology unit. Dr’s would tell their colleagues, if something happens to me.. Dont take me to a private hospital, take me to Bara..

They had all the best of the best, top notch experts. Eventually these experts had to leave with those whole “african empowerment” and all that stuff the government is implementing, so the whole unit is gone down.

It’s a waste of time. Especially in a situation like mines”

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Considering my experiences at Charlotte Maxeke, I don’t doubt that statement in the least.

Dr’s usually prefer to do all the noninvasive tests first and go down this route last. At this juncture, the invasive tests are a requisite to see the extent of the defects and damage since the noninvasive ones are showing evidence of such abnormalities..

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The Coronary angiogram was scheduled for the following Tuesday morning. I had to be there by 7am.

We were told to do pre-admission forms at the hospitals main reception area to save time during the hustle bustle in the morning. It takes long to fill in forms and for them to then confirm it on the system.

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Strict instructions: You cannot eat or drink anything from 10pm the night prior to the procedure until it is over. If you do, it will have to be canceled /postponed.

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Note: There are complications / risks that may be associated with certain cases. For instance – you have to lay flat and usually I cannot breathe when laying down completely flat or for too long. So there are a couple of factors to discuss and take into consideration prior to having one.

In normal cases nothing happens, no need to worry! You are monitored well. Ahamdulillah Dr Yusuf is a cautious and experienced professional.

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Somehow, I had an instinctive feeling the cardiac catheterization was coming in the pipeline & I’m so glad doc didn’t dismiss it. As much as it can be slightly nerve wrecking to have the procedure done, it suppose to give you clarity..

Since ages, I’ve been wanting someone to dig deeper and take on the initiative of investigating and explaining to me fully what more is wrong with my heart based on the symptoms I feel..

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My first message sent to friends and family:

I new something *more* was wrong but obviously couldn’t pinpoint.

Remember I kept on saying I’m feeling weird turns, flops, blobs, movements and sounds in my heart even when the usually rapid pulse rate is at a lower number…

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On the flip side, intense worry regarding open heart surgery reflected through the eyes of loved ones, because only we are fully aware regarding all the precautionary measures & complications involving surgery with Dysautonomia.

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These Dr’s are uninformed of the bigger scenario surrounding surgery because it’s not their field, unless they consider bringing a neurologist to the table for input..

Albeit, one movement at a time. Let’s not fret prior to the time a decision has to be made & deal with the current situation.

Heart surgery didn’t sink in fully because I was so exhausted from being 3 full days out on the go. I needed to rest my body & mind before absorbing the overload of information suddenly thrown at my face.

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At the present moment, I could only express sheer gratitude for being blessed with an incredible pair of Dr’s with alike characteristics after approximately 3 years of swimming upstream

Later that day, after going to and fro in the hospital, I returned home marveling at the majestic & artistic shades of scarlet and blood orange outstretched over the horizon while vivified from the new events.. Unbeknownst to me, the elation would soon fade away, alongside this captivating sunset.

A scarlet sunset
I cannot forget.

It colored my vision of dreams on the horizon but also erased them into nightfall before a brighter picture took shape. The remaining pieces of the fallen vision would evolve sooner than thought into a great mystery..

Whilst mental & physical preparation began for the BIG day approaching I was oblivious, the picture painted in our minds would be pulled out and ripped apart

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I was oblivious, my long awaited dream of 2 good Dr’s to help me get on board a steady route, would sink quicker than it materialized.

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I was oblivious, the Dr’s had a plan in their minds, but that particular plan would be shattered by the greatest of all planners who viewed theirs unbefitting & detrimental

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I was oblivious, this heart would have to surmount the unexpected..

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I was oblivious of the major fight ahead, about to strike with tremendous force & challenge every atom of strength within my being

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After all, my defective but resilient heart would have to finally conquer the battle raging out & within, by bowing down in submission to the controller of all affairs & accept what He willed to be..

(Shout-out to my wonderful soul sisters who sent some of these beautiful & apt heart quotes)