10/08/2021
9:30 AM
An early start to an important day with some butterflies fluttering away inside my tummy although less as compared to a first time meeting. Post-appointment nerves are part of every single consult more so since today was scheduled for a consequential decision.
As always, I perform two rakaats Salaat-ul-Haajah before leaving home so my heart is at ease; towards whichever direction the waves lead from here onwards, it is for the best course and whoever prof selects to handle the procedure will be a person who Allah guides accordingly throughout the entire process from beginning to end.
We were in regular contact with prof every now and again but my last consult was in January so he begins from where we ended by taking note how many times a month do I require infusions? How is my diet going in terms of Gastroparesis? Has my condition improved with the treatment or regressed? What are the noticeable changes and on which areas do we need to focus more?
I then take reigns of the conversation not wanting to waste time and delve into a complete report of the drip drama and vein saga as related in chapters 281 – 289.
Prof listens attentively with full concentration focused entirely to everything I say not in the least bit distracted or consumed by other thoughts or work. Nodding his head in understanding as I speak and patiently filling gaps when words escape my tongue. Not showing any annoyance as I think through my sentences slowly.
I explain my initial reluctance at the mention of a port. Previously I wasn’t compelled to entertain the idea and easily avoided one because venous access was simple unlike now where it has become an absolute last resort and circumstances have placed me in a position where I do not have a second choice or option.
Nonetheless, the istikharah I am making continously keeps taking route towards the positive.
Prof listens in surprise at the mistreatment and an untold sharp-worded encounter that followed with a doctor who refused to assist us in setting up an infusion.
Without me having to fortify or justify my grounds by emphasizing and emptying my lungs of air trying to spell every fine detail he already understood the dilemma once I conclude and request an opinion.
Prof approves:
Yes we can consider it.
Picks up his phone and together we view the different types of ports.
Usually for dialysis also they insert a permacath so port-a-cath is similar but different. It’s a short operation which the vascular surgeons do and I know a few vascular surgeons.
Dr Taariq is very good. He was first a dentist, became a doctor, and then a vascular surgeon. I know few other good surgeons but they all at Milpark.
K:
What are our chances of having it done as a day procedure at an outpatient facility?
In a jiffy prof rings Dr Taariq:
السلام عليكم و رحمة الله
How are you Taariq?
Alhamdulillah, Alhamdulillah. Taariq quickly, I just want to discuss with you – I’ve got an outpatient with POTS, it’s a fairly new entity and I’m not so sure if you heard about it. So basically it has a lot of symptoms, her most troublesome part being the gastrointestinal issues.
She’s on an international forum and it’s well known that many patients get different infusions every few weeks. Now because she’s getting it so often, obviously you know there aren’t enough veins and there are also patients with port-a-cath on her forum.
So they’ve made istikharah and they feel they want to do it, I know vascular surgeons usually do these things so you probably the right person.
She’s stable, for now she’s okay. It’s a follow up appointment but they not on medical aid also and I know this can be done as a day procedure so whichever is the best cheapest option, I don’t know if you can use fordsburg or another day clinic somewhere. More or less how much would it cost?
Patient is from… A local south african. Name is Khadeeja Munchi
Dr Taariq speaks
Yes, yes.. Hospital theater fee is going to be the most costly.
There’s books on it and they have international congresses on it every year. Patient herself knows a lot and is very well informed so when you see her she’ll give you the whole background.
Ok Jazakallah Taariq. I’ll send you her details and you can just confirm with me time and date for the clinic appointment.
Call ends.
Ok so Dr Taariq is also at Charlotte Maxeke and he can most probably organize it there. There’s not many vascular surgeons around the country so he’s at Charlotte Maxeke, Milpark, Tambo memorial and Helen Joseph.
He’ll confirm where he wants to meet to discuss the howabouts for the procedure and I’ll write a referral letter now.
He’s never seen a patient like you before with Dysautonomia. He does ports all the time for people with chemo and dialysis so I will send him some pictures and you can just explain properly the specific type although they all similar each one has different pros and cons and you don’t need a big one.
When training a patient to administer their own infusions; most important is to ensure there’s no air bubbles because it can get stuck in the lungs or heart and cause problems. When a drip flows through a larger blood vessel it’s closer to your heart so you have to guard more against air bubbles, particularly at the end because with small peripheral veins if the infusion stops, blood back flows
But with a larger blood vessel if the line runs dry, air can start flowing through very easily while you’re asleep or unable to monitor yourself if you’re sick. You’ll have to train at least two people at home who can observe when to close it even if it’s one of the helpers or somebody.
We wrap up the port-a-cath topic and discuss few random health matters, one related to medication and migraine. Prof prescribes Clopamon coupled with a brufen for migraine attacks because the homeopathic medication stopped working.
My body became resistant to it overtime and like I mentioned previously; (Rizatriptan) Maxalt counteracts with Prinzmetal’s Angina so we have to trial another. Clopamon will hopefully be more suitable especially when the migraine is triggered by dehydration from Gastroparesis not cranio-cervical instability for which I am under chiropractic care.
Instead of hastening us out when closing the file he encourages me to ask away if I have any questions remaining or a concern that has perhaps come to mind.
I think for a few minutes then reply in the negative, expressing heartfelt appreciation for the double slot he allocated for me knowing 15 – 30 minutes is not sufficient and I return home beaming in relief at the outcome still finding it illusional that I didn’t walk out of a doctors room crestfallen, heartbroken and infuriated with new wounds added to the old.
My biggest fear of the port-a-cath plan backfiring did not happen and his co-operation eased the entire matter. I did not have to plead my case or beg him to realise the risk of losing venous access.
Yes, I hold prof in high regard and know he is not the type of person who will make my current state of affairs more difficult than it already is, but the past gaslighting always creates hesitance and replays a scenario of what if he refutes my research or downplays the issue and says it’s no big deal.
While I await a confirmation call from Dr Taariq the following verse appears while marveling at the result of my consult
قال هذا رحمة من ربي
This is a great mercy from my lord
His promise of ease and wordly reward
Swimming Through The Waves 