293 ~ Gripped by apprehension ~

14/08/2021

The apprehension in my heart weighs heavier with each prayer of istikharah and my search for an after theater antiseptic observation space becomes futile.

“You can’t expect hospitals to oblige to your requests because reverse barrier nursing or a reserved room is probably only suited for patients in the US. Forget about it happening in SA” – or so – I am told by a strong able-bodied individual of healthy privilege who has no idea how our healthcare system operates in reality.

To which I retort:

No! I disagree. If reverse barrier nursing is catered for certain patients requirements in KZN, how can a little arrangement not be made here? I’m not asking for a fancy facility or demanding a lengthy list of technicalities. It’s simple as a strict isolated space. Nothing more!

Why then did we direct a three day campaign and champion for patient safety in health care in 2019 on behalf of Rare Diseases South Africa?!

How can I possibly go ahead and leap into the unknown with uneasiness foreboding the entire procedure?

Deep concern overwhelms loved ones and hesitance is clearly etched on their faces. They do not wish to add on the confusion so instead of bombarding me with a rifle of conflicting thoughts, each one encourages me to follow my hearts intuition alone and leave all opinions aside; be it from a doctor or layman.

Overtaken by avolition the knot in my gut twists tighter and a dense cloud of uncertainty hangs over our heads akin to the frostbitten gloomy weather outside.

I decide to present my concerns explicitly to the doctors with hope of their understanding and an alternate arrangement being provided.

After a sincere apology for contacting them during offline hours the succinct of our communication is as follows:

I am very happy with Dr Tawriq and the manner in which he accommodated me by making a plan to sleep at home Monday night then return on Tuesday morning for the procedure.

Also I have continued making istikhaarah since deciding on the port-a-cath and I am set on going ahead.

The only disturbance I have is regarding the observation period because reverse barrier nursing is a requisite during any kind of hospital stay.

During my last admission, I was safe as long as they isolated me in a single space / side room but once they mingled me with other ill people for only a few hours, I picked up pleurisy. Shortly thereafter – bronchitis and pneumonia which made my oxygen levels drop low. My breathing halted several times during those 8 weeks and recovery was a pure miracle.

I’ve had four infections in the past six months and the last bout took a long time for my body to respond to treatment and start healing. At one stage family members started reciting kalimah and Surah Yaasin because my vitals became unsteady and they thought I was on the verge of leaving but Allah Ta’ alah is most Merciful and by virtue of everyones powerful duaas I recovered significantly Alhamdulillah.

Trauma is ingrained from the agony and deathlike experience caused by each infection so I take utmost precaution and would like to please request as to how it can be rearranged more suitably?

Contrary to our hope of understanding the response is:

With regards to your procedure, the postoperative monitoring shouldn’t be longer than an hour or two and now with covid the nurses and doctors should all be wearing masks so the risk of you getting infection is extremely low.

I know with Dysautonomia the immune system can be a little weak but generally it’s not so bad unlike cancer patients undergoing chemotherapy where they easily pick up lots of life-threatening infections.

So Insha-Allah your immune system should be strong enough to fight it. See, in a government facility it can be difficult to facilitate reverse barrier nursing and also to explain to the medical personnel who don’t know much about Dysautonomia.

Practically it might not be possible so my suggestion is dont focus too much on that, Insha-Allah your immune system will be strong enough, just read your duaas for before and after the procedure and Insha-Allah it will go well without any complications.

To an outsider the above response might be reassuring because it came in a gentle courteous tone which is appreciated but to the person living in this body who knows the countless life-threatening infections it has battled, dismissal and denial of a secondary plan tattered my already raddled state.

Postoperative monitoring after anesthesia will never be one hour if after a cardiac catheterization I floated in air with hypotension for 24 hours from the after effects of a mild sublingual sedation not even general anesthetic, so it will be unstartling if I need overnight observation. Light anesthesia doesn’t work for Dysautonomia patients, we usually require strong sedation.

I lose all poise and yell in defeat at the disarray of the current plan. The doctors cannot be made blameworthy for their lack of comprehension because who in South Africa is aware about the basics of Dysautonomia let alone the intricacies.

At the end they aren’t educated but our hope was; after being fully enlightened they’d see it through a different lens and not invalidate the reality by stating you’re not like cancer patients. Yes we are intrinsically different from cancer patients but my lack of immune defence functionality should not be brushed aside.

I start doubting myself and ask if I am being too fussy? Do I let go of that loud and strong inner voice? Whereas on the opposite side a part of me stubbornly refuses. Self conflict overtakes because I am usually an optimistic person who always makes light out of any and every situation so the apprehension cannot be rising from baseless fear?!

Why is my heart cautioning me? Doesn’t this serve as an answer? Istikharah is not made to feel solely positive. Our direction given is from the feeling that dominates after praying for guidance.

Time is pressed against me now and only 9 hours remain to confirm the final decision.

I climb into bed and plead my case to the heavens by means of the following duaa:

Oh merciful Allah; be with me for there is no assistant for me besides you

Please guide me because there is no one else in control who I can call unto

And then play the following (video) duaa on repeat until sleep encompassed me into a few hours of repose…

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