There are four tests that have to be run before I am able to get my Spinraza:
Platelet Count- how many platelets do I have running around in my blood and can make themselves available to plug up the entry point to my spinal column after the Spinraza has been injected so my Cerebral Spinal Fluid doesn’t leak out.
My platelets are on the low end of normal.
PTT- how long does it take my platelets to get to it and clot.
My gals are on the low end of normal – it takes them 30 seconds. The upper end of normal is 32 😩
Random Urine Protein – this checks to see how my kidneys are doing.
Spinraza can be hard on the kidneys, this will be one of the tests to see how my kidneys are faring.
We like to see Random Urine Protein under 12. The first results from Quest were inconclusive…
No fear, we have the last and final test as gatekeeper…
Protein to Creatinite Ratio (Urine) – this keeps track of how well my kidneys are filtering byproducts like creatinine, which is muscle waste product and protein from my system. It’s a lot more complicated than this but we’ll go with this for simplicities sake.
This test could not be preformed by Quest either because it is dependent on the Random Urine Protein, which came back inconclusive.
I’d have to get tested day of.
Which means Spinraza Day saw me riding over an hour to the hospital with a 50/50 chance of getting dosed. It happened once before that I made it all the way there, tested and my Random Protien was 14, P/C Ratio was 875 (normal is between 20-300) and Doc (rightfully so) put the kibosh on the whole thing.
It took me over an hour to get there, I was gowned up, ready and prepped to be wheeled into the OR and I had to be dressed and sent back home. That last time, I got a Nephrologist on board as part of my care team.
My kidneys wound up being fine per Kidney Doc but that also put me behind schedule when it came to dosing. Everyday counts with Spinraza, it’s one more day that I get to be here.
But here I was, facing this same scenario.
I arrived at the Cardiac hospital entrance on the total opposite side of the hospital, per instructions because our standard clinic was being remodeled. The injection would be done in the Cardiac Hospital OR.
But seeing how we needed extra space for the hoyer lift, to maneuver me and for my chair, The Nursing team advised me to register once I arrived, have the registration desk call over to let them know I was there and they would come get me. Not only did I have these last labs to run but Doc was also supposed to be starting procedures at 2pm that day, instead of 3:30pm.
Transportation dropped me off at 1pm. After registration and a brief wait, I was escorted by CNA Patrick to the being-remodeled-clinic-so-we-can-have-more-space by 1:15pm. It takes the hospital lab 20 minutes to run the test, not including the time it would take to power walk it down there.
Crunch time.
Before we began, I asked for any consent papers I would have to sign while I was upright. Once signed, everyone began their work.
Nurse Nury manned the computer to do my intake. At the same time Nurses Jenny, Gayle, Veronica (I think I didn’t get her name correct) and CNA Patrick took off my gear (keys, lunch bag, phone, etc…) and proceeded to take my shirt off and gown me, slide the sling under me, get me hoyer lifted up and onto the gurney so they could get the Urine sample to the lab.
Mean while, Nurse Nury is asking questions through the curtain about my meds, when I last took them, how my mental health is, when I took my last COVID shot and when I had my last cycle.
It was the NASCAR pit for Spinraza.
By the time the Urine sample was being powerwalked to the lab, it was 1:45pm. Record time. Just 20 more minutes and we’d have the results.
Except we didn’t. When a call was placed to the lab to press them for the result a little bit early, they let us know that they could only run one test because the order was entered in incorrectly in the computer.
Slight panic.
Nurse Veronica called the office team, explained to them what happened and asked them to place the second order for the other test. 20 more minutes.
Executive decision was made to bring me to the cardiac OR Pod waiting area while we awaited the results. The other pods were already filled with patients awaiting their injections (pain blockers mainly, I was the only Spinraza injection that day). I was wheeled into pod 13. Lucky number 13💜
Everyone was on pins and needles as Doc was due to arrive at any moment. So we thought.
Another call was placed to the lab to press them for the results. But some type of emergency erupted in the lab which caused the person answering the phone to quickly advise us to call back before hanging up. 😳
By this time it was nearing 3 PM. Doc was an hour late and we were running out of time as he was due to show up any moment.
“He’s here… he’s here!!!” Everyone snapped to attention.
I was one of the first patients he saw as he strolled in.
“Hi Sandy.”
“Hey Doc!”
On everything I love, my Dad has been one of the only people that I’ve allowed to call me Sandy. Him and Doc.
Nurse Nury had to be the one to break it to Doc that we did not get all of the results back yet. He did not seem pleased at all.
He picked one of the other patients first and waited for my results in the meantime. But right before he had to go into the OR, the results came in:
Random Urine Protein – 14… (normal is 12. Not looking good)
P/CRatio: 49. Normal is between 20-300.
“It’s high but we’re gonna do it.” Doc says.
“Got it. I’ve been worse, so much worse though.” I say.
“It’ll be fine.” Doc saunters off to his first patient.
Crisis averted.
Before long it’s my turn. I am gathered up and wheeled into the operating room.
An extra set of hands is called in to help transfer me from my gurney to the operating room table on my left side. My undershirt pulled off my right shoulder, exposing my neck and the surrounding area.
Doc comes in not too long after and ask if I’m comfortable.
Yup, I say.
And he begins. He explains that he will be cleaning off the area. The wet gauze with the antiseptic is cold against the side of my skull, behind my right ear. It feels like he is beginning a lot higher than he normally does.
Usually he begins in the soft tissue a little ways from my skull, still behind my right ear. This time he begins inserting the lidocaine in the area where my skull ends and the soft tissue begins.
The two pinches of lidocaine come in succession, while he narrates his next steps.
“Okay… I’m going to put the sticky plastic.” He places, then repositions the sterile drape. The small hairs on the back of my neck pull when he repositions it.
“You might feel a little pressure…”
As the catheter snakes toward my spinal column, fluoroscopy images are taken every few centimeters to make sure it’s on track.
When it arrives at its destination, there is always a heightened sense of pressure before the end of the catheter breaches my spinal column membrane.
“You okay? What are you feeling?”
“Pressure. Just pressure. No pain”
“Okay, there will be pressure.”
He begins to drain the cerebral spinal fluid. For the first time I hear the fluids’ constant staccato drip into the receptacle.
It’s bizarre to know that a few minutes ago that liquid was bathing my brain and my nerves. I helped to create that liquid by drinking water and nourishing my body so that it could turn those things into the liquid needed. And now it was gone.
5 ml. It is always 5 ml.
“Almost done.” He says while reaching for the medication.
With medication in hand, he begins administering it through the catheter.
I catch the eye of the new fluoroscopy tech. He averts them in embarrassment for staring maybe?! I don’t think it is every day that he gets to see someone awake while they have their spinal fluid drained.
The left side of my jaw and shoulder get warm from the inside and I know the Spinraza has found Home.
The syringe empties with a squelch and I wrinkle my face. I imagine my platelets swarming to the puncture sight, signaling all their platelet pals to come cover the breach in my spinal column, in my neck, behind my ear.
“All done! You did great!”
“Thanks Doc – see you in four months!”
I’m appreciative of my nurse team, thankful for Doc, grateful for all those who I do not know that made and make this happen for me.
Spinraza #12, is down in the books!