Dr Tawriq walks in to the vascular clinic and takes me in first as per profs referral and our meeting begins with a condensed summary of my history to the point of a need for IV fluids. He listens keenly and asks relative questions pertaining to Gastroparesis.
The port is quite easy to manage so who will manage that is my question to you?
We inform him regarding Dr Aarif & the assistant nurse – Sister Janet.
Ok give me his number, let me call him now..
Assalaamu alaikum Sheikh Dr Aarif. My name is Tawriq. You know I’ve got a lady here who happens to be your patient – Miss Khadeeja Munchi. Basically she was referred to me by Prof for a port assessment for frequent intermittent infusions and he wants me to establish vascular access so we want to put in like the one for chemo
Yes yes. We put it subcutaneous and it’s comfortable and there’s a special needle that has to be used, it’s quite easy but I think you’ll need help from a nurse or somebody. So she tells me; now & then they recieve assistance from you & the nurse & I’m trying to establish if you’ll be comfortable with that?
I’ll organize the first needle supply and I’m happy myself to demonstrate it with pleasure to whoever can manage. It’s easy to use, comes with a certain butterfly needle. I don’t mind coming over to your hospital because I know Prof very well and he asked me to do him a favor so I’ll show you all. When we put a port we leave the first needle in for use. We can work it out in a way that’s suitable to you.
Dr Aarif speaks…
Alright, okay, Insha-Allah. Yes. I understand. No problem. Jazakumullah. Assalaamu alaikum.
Alright Aarif says he will talk to his nurse and revert back to you. So we Insha-Allah can do this next week.
I enlighten him regarding my susceptibility of infection and inquire regarding particular hospital accommodations in that regard – what are my chances of having it done privately at an outpatient facility in order to avoid overnight admission?
I understand that fully but the only problem is the theater fee in a private facility. Can you sleep over in a hospital?
Usually we admit overnight and if able to do local anesthetic you goes home the same afternoon. So you do your covid test and kidney function + FBC bloods at the lab, come in Monday afternoon to Charlotte and I’ll book you first for Tuesday morning. What do you think Khadeeja? He prompts with an intrigued expression clearly fascinated by my candid nature
Will they accept me back after my previous file closed and I was told not to appear there again?
Dr Tawriq more entertained 😂
Why what did you do?
I’m innocent from crime 😂 but apparently demented and needed psychiatric attention.
He appreciates the sarcasm and laughs saying you don’t have to bother about that because here you’ll be coming under my instruction straight to vascular which bypasses the other channels.
If I’m admitted overnight will I be mixed in a room with other patients, not isolated?
Nods his head in the affirmative.
I refuse politely and he looks stunned for a few seconds not quite expecting resistance or challenge from a patient uncompromising their right to safe healthcare.
What infection you so worried about Khadeeja? Problem is the space is very tight at Charlotte now with covid after they burnt down, only a portion of the hospital is in use.
My heart is not convinced on this plan and I know it might sound hyperbole or finical but when my closest family members fought to keep me alive as I battled various infections on my ‘deathbed’ & it seemed as if we had no chance of survival, they carry the same worry that others outside cannot comprehend.
Our hesitance is not due to a lack of tawakkul, it’s about taking all the necessary precaution while placing your trust in Allah and whatever happens after is by his will beyond our control.
Dr agrees then walks out to speak with a colleague but my mind is engulfed by uncertainty.
He returns to resume questioning:
Tell me something more important – You don’t have a congenital structural heart problem besides the rhythm abnormalities originating from Dysautonomia?
Do you smoke? (We laugh) and he joins us saying I have to just clarify you know, and any other history of family illness?
So aside for the Dysautonomia you consider yourself an otherwise healthy person?
And what do you do?
He is impressed to hear Allah blessed me with an ability of memorizing and then teaching hifdh which majority of the past medical personnel could not view from the perspective of being a person living with Qur’aan.
A past incident replays where one of the doctors told another: You know she is a haafidha so she can’t be psychotic or faking these symptoms. We have to take her word for what she’s saying or else it won’t be in line of respect with the Qur’aan she carries in her heart.
Dr Tawriq outstanding from the rest honors this position and makes effort to go the extra mile. His excellence outshines by personality and profession now I know why we were referred to him.
Ok so here’s a plan. I’m gonna make Khadeeja agree. I know how to make her agree (with a glint of humor in the eye)
See, because I don’t want to delay you with the port. On Monday morning do your lab work because it has to be done within 24 hours of the procedure then come to hospital for admission at 11, open a file and get you on the system. Meet with the anesthesiologist and go home. Don’t eat anything from midnight. Tuesday morning be here by 6, go to ward 394 for prep and we take you into theater by 8.
People are not allowed to walk into the hospital technically, you have to come via ambulance so it’s a special arrangement suited for her weak immune situation and aftercare supply will also be sorted.
I clarify certain questions from pre-written notes, he pens out the forms for lab work and surgery. Then proceeds to the next room and speaks to a vascular colleague about meeting me on Monday as the duo operate together.
After confirming the arrangement he returns and we thank him profusely for moving back and forth to accommodate my complex needs.
Our ways part but my heart shifts from the previous days pinnacle of optimism and excitement to a complete unsettling feeling about stepping foot into Charlotte again, not due to the past trauma but my biggest concern now being the postoperative care?
Was I going to break my self promise of not returning to Charlotte regardless of the circumstances?
لا يلدغ المؤمن من جر واحد
Surely a believer is not bitten from the same hole twice
In all probability I will be unstable after general anesthetic and the nurses unconcerned approach leaves a question mark – how do I know if they will monitor properly or see if assistance is required?
Reality is; doctors instructions hold no place of dominance once doctors walk away because majority of the time nurses take control and do as they please with an authoritative stance, often disregarding any specific direction on a matter.
Now unlike pre-covid times, we do not even have a guardian to advocate or someone to be at our side after being wheeled out of theater as was the norm.
While it may sound like I’m being a problematic or difficult patient, only I know the mistreatment experienced at Charlotte. I was discharged more sick than the night of admission so my decision is firm – if state hospitals do not facilitate reverse barrier nursing I’d rather postpone the port to another date or and place because mixing me with other patients calls for undue disaster.
I’ve already had four infections this year and some blood counts haven’t stabilized ever since, so with the current state of vulnerability it is a definite no.
Other patients in our local support group are allowed isolation and their right to reverse barrier nursing so why then should I take the risk of exposing myself?
In fact if anyone has to be admitted at last resort, we always remind each other to request reverse barrier nursing.
What is it you may ask?
Barrier nursing is when you have an infection and they need to protect themselves from your infection and keep your infection contained to your isolation space.
Reverse barrier nursing is when your immune system doesn’t work properly or you’re susceptible to pick up infections. The nurses glove and mask up any time they need to be in your room. Thermometers, blood pressure cuffs, stethoscopes and other common medical equipment that’s usually shared around the ward is sterilised for use on you alone.
All the same things are done like with barrier nursing but this time it’s to keep you in a bubble and all infection out. The only way someone who is severely immuno-compromised with Dysautonomia can tolerate being in hospital without catching infection!
I begin to search for other outpatient facilities that may be able to accommodate reverse barrier nursing and an after theater antiseptic observation space while making istikharah and praying fervently for guidance to see if I find a nonrational change of heart or an alternative plan…