Looking back in retrospect over the sequence of events swept over the past five years, one can marvel at the incredible and miraculous change of situations beginning via a close family friend who passed on with covid but in turn connected me to prof (as related chapter 264)
Like I have repeatedly mentioned; in the past some medical personnel were skeptical regarding the realness of my condition as well as Dysautonomia itself and therefore did not comply to any specific requests that were made. Others believed I have a condition they do not understand and were “afraid” to entangle themselves in a complicated case.
However I am grateful for our failed attempts because as frustrating and brutally hard it was to fight for my condition to be understood and addressed, I am now convinced that none of them had the intellectual capacity to guide me safe and sound to where I am – in terms of keeping the bigger picture in mind at all times, and not only following surveys or statistics that are presented, but also applying their own discretion to ascertain a type of infusion that will be most applicable to my individual condition and varying circumstances because each time the infusions are necessitated, we alternate between different types.
After dealing with random medics in between, I can certainly say it is not the same since I am settled with prof and a medic who operate in a manner where each one’s approach compliments the other. They themselves are skeptical of transferring me over to anyone because it is no straightforward case.
The others couldn’t equate managing matters as they do and I know it would have resulted in an unfavorable muddle.
An overdose of sodium chloride and potassium leads to cardiac arrest so although seemingly simple, infusions require great mentation and supervision.
While at risk not having an emergency plan during the past five years, I was also kept safer under divine protection.
When making duaa for them, occasionally my mind goes adrift in wonder of where were you all along but then I remind myself; Allah’s timing contains wisdom and reasons I have to trust and accept even though it might not always be clearly apparent or understood.
I prayed continually and Allah said not yet
Another special time for my answer is set
و من يتوكل على الله فهو حسبه
ان الله بالغ امره
قد جعل الله لكل شيء قدرا
The zebra analogy of no two persons “stripes” being the same is precisely correct. Some who do not have a severe Dysautonomia or the ones who’s autonomic nervous systems are mildly dysfunctional and not “failing away”, do not manifest with the same risks / life-threatening situations others do.
I witness some patients who can go “dehydrated” for days in succession before any major crisis arises. Whereas my body starts shutting down rapidly.
Once an electrolyte imbalance or fluid disturbance occurs, the electrical transmission between organs zap and its if my nervous system says – sorry I can’t keep functioning much longer. Then it shuts down one after another in tow. Sort of a ticking time bomb in other word of explanation.
However the difference now; instead of being met with an objection of “you don’t need” IV therapy, our biggest relief is to hear:
“Drop the question of whether the need is genuine or should you only infuse one liter, she requires two or however many more with specified flow rates over the hours in order for her to regain stability”
For as long as I am nil by mouth intravenous fluids are to be continued.
If severely dehydrated, the guideline is to administer one liter rapidly and a second liter spread out at a moderate pace over approximately +-24 hours.
If it’s a “maintenance infusion” before extreme dehydration sets in, the flow rate is reasonably controlled.
Fluids are always administered symptomatically to avoid complications and overload in the circulatory system.
Initially we trialed with NS (Normal Saline) then switched to LR (Ringers Lactate). After noting the close intervals between infusions and doing a cautious analysis for my best interest, the medic recommended Plasmalyte B as a more effective and safer solution to prevent long-term acidosis from regular NS.
Plasmalyte B treats and controls a number of symptoms and conditions from magnesium deficiency to regulating nerve conduction, muscle contraction, kidney function, urine alkalization, muscle, bone and cardiac disorders, heartbeat, potassium deficiency, electrolyte imbalance, neutralizing acidity in the blood and stomach, increasing the blood volume which is precisely required for the deficit with POTS and my overall condition.
(As well as other purposes not listed)
Now in further word of infusion elucidation; unlike crystalloids where the molecules are smaller, colloids like Plasmalyte B and certain types of fluid replenishment are more expensive but they contain bigger molecules that boost plasma volume by sticking longer to red blood cells before moving or being carried to other parts of the body.
Compared to NS or LR it stays in effect for a longer period and maintains equilibrium with blood pressure upto a maximum duration of two weeks in my case.
Once the third week arrives, plasma volume drops low. I literally feel quantities of blood drain from my head and rush downwards towards the lower extremities as blood is pulled by gravity and the vessels do not make or maintain tightening by three times in order to push it back up. Then the episodic dizziness / syncopes follow in line.
(Isotonic hypovolemia was discussed in the past. Refer to chapters 267 & 268)
People wonder how am I still sick if I am on treatment or receiving regular infusions?
Well, that is the precise definition of chronic. Treatments are prescribed to improve and control symptoms in order for us to live and enjoy some quality of life.
The recommended fluid intake for a potsie is three liters of water per day which is impossible for those of us who have Gastroparesis as a comorbid condition. The closest amount I can digest is one liter which means I am chronically dehydrated and my kidneys are constantly taking a backlash or rebound effect so my laboratory results aren’t upto standard.
From a summary of the first National Institutes of Health POTS Research Workshop, written by 30 of the top POTS experts, latest studies prove that two liters of IV fluids are required on a weekly basis.
It makes complete sense because 10 days ago I peripherally shut down so there were slim chances of vein access and the topic of access after repetitive pokes calls for another whole chapter of discussion.
A peripheral shut down involves abnormally low blood pressure (hypotension) and the result is collapsed veins / arteries that lead to oxygen deprivation of tissue, organs and limbs..
In light of all the above, Alhamdulillah infusions are life-saving and I am immensely grateful that it prevents me from drowning into cycles of unconsciousness but remember – they don’t make Dysautonomia dissappear overnight and alike every other medication, it also reaches a time when the effect wears off.
On my Instagram account I uploaded more explanations and tutorials for a clearer insight as to how we operate infusions from home. One has to be thorough with sterile methods and vigilant to rectify any troubleshooting.
If readers are interested in seeing these mini tutorials please comment and also follow the story updates @kay_born_in_may or direct message to inform me of your request if I haven’t yet responded. Unknown accounts are not accepted.
هذا من فضل ربي ليبلوني ءاشكر ام اكفر
This is from the bounty of my rabb to test whether I shall be grateful
For ease and expertise that makes life more pleasant and beautiful
Throughout it all I’ve learnt:
Hold tight onto your precious faith and fight. Push through the fear and unknowns of this trial
Fighting for life quality is not easy but in the end it will most definitely be worth all your while
Attached hereunder is a comprehensive and concise video that covers the importance of IV therapy in connection to hypovolemic shock. It also explains the benefits and various types of access. Please watch & share