Disabled Chronicles, No.2
I was hoping this update would have been as easy and neat as one of my many #DisabledChronicles posts: a dramatic retelling of my true life events leading to an ultimate revelation. Succinct. Deep. Raw.
Instead, in the days since my procedure, I’ve found myself near tears, touched by the outpouring of magick woo, prayers and love from those whom I share community with, who love and support me. I’ve been moved by the protection and care from those who love me. I’ve sat in awe at how the Universe has aligned the stars and created this space, here for me to be fortunate enough to get this literal life saving treatment now.
It’s been an emotional journey to be sure. 💗
It’s been a long time in the works and I’ve not shared but bits and snippets on here but, I’ve begun one of the treatments that will slow down/halt my main condition, SMA.
This is a recount of all the hard work and doctor appointments.
Bestie accompanied me to the hospital, which is an hours drive from the area where we both live. We arrived early and made our way to the outpatient center where the procedure was to be performed.
They were expecting me, which I knew? But what I didn’t know was why it was necessary for the Director of the outpatient clinic and the Director of Nursing to introduce themselves to me as well. Though I was a new type of patient for them to treat (they’ve never treated Spinal Muscular Atrophy [SMA] patients before), the procedure (spinal injection, similar to an epidural) is routine for them.
One of the staff members kept referring to me as the Million Dollar Patient. Which I found odd-ish?! But they seemed genuinely glad and happy that I was there. Which was comforting but weird?
Typically medical staff are not too keen on me showing up anywhere: I’m a hard stick, my veins roll and are difficult to find, the kaleidoscope of precautions that need to be taken with me is dizzying and my body often does super, until it decides not to, then it’s a four alarm fire in a hurry which often has staff scratching their heads and scrambling for solutions.
I’m the type of patient that pulls medical folks out of their text books full of theory and straight into real life with no notice or direction.
They prepped the back portion of the of the clinic just for me. They had a Hoyer-type lift that would be used to transfer me from my wheelchair to the waiting gurney. The staff seemed abuzz. I couldn’t understand why though, until the nurse who was doing my intake let me know that they had all (5 nurses and assorted staff) been in training in anticipation of my arrival.
After my initial consult a few weeks ago, I had signaled to my Patient Rep (the go-between between the hospital-at-large and myself as the patient) that the staff nor doctor seemed familiar with the particulars of SMA patients and that I didn’t want to go back until they had some training.
So they did. The patient Rep spoke to the hospital and the hospital trained the staff on how to cater to SMA patients. I was also to learn later, that unlike my assumption that there would be other SMA patients scheduled for this same procedure, I was the only one at this hospital, at this time.
Because of the type of insurance I (and the handful of other SMA patients in my same boat have), no other hospital would take the chance on doing this procedure on us. The pharmaceutical company, in conjunction with the MDA/SMA clinic and this hospital came to a trial agreement/arrangement. The hospital chose to do a trial run, with one SMA patient, to see if the insurance would keep their word and reimburse for the treatment. If all went well, the other SMA patients in the same boat as me insurance-wise, would be able to start being scheduled.
This is that trial.
I am that patient.
And I, had NO idea until the day of. I asked the Patient Rep why they chose me and he said that basically because I showed up. To all of my appointments, I did all the things that the referring doctor asked of me and most importantly, I showed up.
I was and am shocked. For something so important, it all came down to showing up.
I was also told that the hospital, in this trial agreement/arrangement, committed to purchasing all four of my ‘loading’ doses ahead of the insurance reimbursing them. That’s $125k, per vial. And they are all waiting for me. Well 3 of them now that I’m done with the first one. Plus the price of the doctor performing the procedure, the staff, etc… and I can see how it could reach close to, if not a million dollars.
So this – the injection, the staff being trained, everything had to go without a hitch to determine if others in my boat would get their chance too.
Three nurses rigged me up to the hoyer lift and transferred me from my chair to the waiting gurney. As they removed my shawl, my necklace, my purse, Bestie stood by and took possession of them in turn. The worry on her face palpable.
They dressed me in their gown and covered me in warm blankets until the doctor was ready for me in the procedure room. I got one more word of encouragement from Bestie before being wheeled off.
There was a flurry of movement and further transferring onto the procedure table. I stayed calm, noting where my body was in space while folks scurried around making sure I was comfortable.
Once in position, I can only hear the doctors voice as he instructs me on what he plans to do. I register my consent in a low shaky whisper.
A rotating x-ray machine circles my back, capturing images of my spine and its accompanying hardware. I eye the metal scaffolding keeping me sitting as straight as possible, on my insides. I begin to imagine how the doctor is planning his approach to reach my spinal column to inject the medication and I quickly have to look away or panic will set in.
It’s different when I’m looking at x-rays of someone else. But when that image on screen is me… it’s too easy to imagine the worse and to allow my mind to go to dark places.
Nurse Denise sees the near terror eclipse my face, so she gets close, like an intimate lover would and speaks in hushed tones. She reassures me, in only the ways Bethany has been able to do. And in that, I hang onto her words as the doctor begins his work.
He attempts to find a spot to thread the needle between my hardware, my non-fused vertebrae and into my spinal column. A feat that will take deft hands. And for all accounts, his is purported to be the deftest.
The lidocaine numbs the bottom right side of my back and I get nervous. I feel the pinch of the needle and feel the doctor doing his best to thread his way between everything going on in my lower back.
My eyes begin to tear up as he goes deeper and it gets painful. I voice my discomfort in little yelps and uncomfortable groans. He has his technician adjust and re-adjust the x-ray machine, snapping images of my spine and tangled metal and soft tissue.
Denise continues to comfort me.
45 minutes go by and the doctor can find no way in. He removes the needle and reassesses what he wants to do next.
“I’m going to try right here…” he says. And presses his finger behind my right ear.
“Do you trust me?” He waits for my reply. I give one but it is so low, so small, that he cannot hear me.
“She gives no answer!” He chuckles, looks over to my face and asks why I am crying. I tell him that I am scared. He tells me that it’ll be okay.
At this time, Denise had moved to help the doctor prep the new area behind my ear. Before he begins, I ask for her. She rushes back like a Momma who left her new baby. I am thankful to see her masked face and to hear her encouraging words that feel like hugs.
Close to my brain/stem; that was the new injection site. And the place I hoped he would never have to choose. There are many obvious dangers in choosing that area: that’s where my brain-meats live (!!!), infection, there could be a wrong turn and I could die, stroke, brain damage. So it was not for nothing that I began to cry. Things got serious quick.
After prepping the area, he informed me that he needed to make room for the medication by removing cerebral fluid.
“Okay.” I say timidly.
I feel the thin needle pinch my skin, press through my flesh and then pressure as is tries to breach the protective layer that envelopes my brain/stem.
I voice my discomfort as the doctor maneuvers, easing the discomfort as much as possible yet still pressing his way gently beyond the layer.
This moment feels surreal. There is a needle at the base of my brain and liquid is being removed. Running comes to mind but I physically can’t. And even if I could, I wouldn’t. My condition has progressed so fast in the last 18 months that I’ll subject myself to this (this!) to slow it down, if not stop it.
And so I stay stark still. Monitoring how I’m feeling, verbalizing this to Denise, looking to her as my anchor in this unmoored space.
It feels like warm dripping water, feels like someone is pressing heavily their thumb into the back of my ear and I endure it. I cry, scared at the possibilities and I endure it. I am determined that this condition will meet its brakes. It will be stopped. It will heel.
Once the requisite amount of cerebral fluid is removed, the doctor begins injecting the medication.
“The medicine is going in now. I have to administer it over 5 minutes.”
“Okay.” I whisper, fully aware that there is a needle sticking out of the side of my neck. I cry some more.
The pressure behind my ear had eased and then returned, bringing with it pain down my right shoulder. I imagine my body being shocked, surprised, angry at this intrusion. And I will it not to react and cause trouble. I beg it to heed and allow this.
And in a moment, the doctor announces that he is done.
I am stunned. I did it. With the help of #TheVillage, there is $125k worth of life saving medication getting ready to course through my spinal fluid, saving my motor neurons, giving me more time, helping me live better. I close my eyes and cry some more, while Denise tells me how proud she is of me 💗
It didn’t take long for the medication to start working. 20 minutes into recovery, I was able to breathe in deeper than I’ve been able to previously, while on my back. I was able to drink liquids, via a straw, while on my back. Both things I have not been able to do in too many years.
In the subsequent days since that initial injection, I’ve had less trouble brushing my teeth on my own, swallowing has been so much easier, I’m not wiped out or wrecked after a few tasks.
I had a light physical therapy session and then immediately went and ran a long errand. Unheard of things as of late. The therapy session alone would have finished me for the rest of the day.
I’m so filled with energy that I managed to over do it over the last two days and have had to spend today resting.
And so, I wanted to share, to let everyone know – it’s working! I am doing well!
I have three more injections to go to complete my ‘loading doses’ over the next 9 weeks and labs to make sure my body is doing okay with the meds onboard. After that, I’ll get an injection every 4 months.
So here we are folks – you get to have me with you a little bit more in life 💗💗💗
With ALL of me, with everything, Thank You 😭😭😭💗💗💗