Following my neuro consult and oncology consult, I was told I would have two days of testing. Once insurance approved the testing, they would be scheduled and they would be long. Good grief, they weren’t kidding.
My transplant nurse — I already think of her as my partner in crime and captain — told me to watch my MyChart for tests and appointments that would start to populate. The following Monday, I had 19 orders listed. Kudos to the scheduling team for orchestrating two well-timed days of complex appointments. I do however have some feedback for the auto texts for check-in sent for EACH appointment… unsubscribe… UNSUBSCRIBE!
So what was ordered?
Blood Tests (14 vials to be exact)
- T4 FREE/FREE THYROX
- TSH BLD
- HCG QUANTITATIVE
- IDM PANEL ADULT
- SICKLE PREP SCRN
- HEP B SURF AB QUAL
- IMMUNOGLOBULINS GAM
- MAGNESIUM BLD
- PHOSPHORUS INORGANIC
- URIC ACID BLOOD
- LDH LACTATE DEHYDRO
- TYPE + SCREEN
- COMP METABOLIC PANEL
- CBC + DIFF
All Systems Go?
- TRANSPLANT NURSE APPOINTMENT
- SOCIAL WORK APPOINTMENT
- XR CHEST 2V FRONTAL/LAT
- LUNG DIFFUSION CAPACITY (DLCO)
- SPIROMETRY BASELINE ONLY
- ECHO W/O CONTRAST
- EKG RHYTHM STRIP COMPLETE
- OPTIC NERVE IMAGES
- NERUO PT
I did in fact google each and every test listed above to see what they are for and why they might be ordered. The appointments, tests and blood draws are to ensure the rest of my body can withstand the chemo. This does not include the 90-minute MRI I had a few weeks ago… but I have that process down nine years into this rodeo. Spoiler alert: everything came back great. I keep telling everyone it’s my nervous system that is jacked up, everything else is in tip-top shape.
Navigating the maze
So Cleveland Clinic’s main campus (where I used to work every day before COVID) is big… really big. The institutes are in multiple buildings, there is patient and employee parking, three Starbucks and one million ways to get lost. Hint: if you are ever on main campus and lost, find a lovely human in a red coat — think red blazer, not revolutionary war. They are human helpers for anything you may need.
Luckily, I work there and already know my way around, where the bathrooms are and critically, where to get coffee. Knowing where to go and where you can get what you need helps with anxiety in an already stressful day. I also had my sister, husband and friend Maggie with me at separate times during the two days because I firmly believe in having a person with you to listen during major medical updates — they hear differently when it’s not happening to them. More on that at another time.
On day one, I had appointments at Taussig to start the day (sometimes called TCI or the cancer building or CA… not confusing at all, right?) followed by a cross-campus trek to the J building for heart tests. Who knew an echo consisted of a lot of goo? I wrapped up the day with appointments back at Taussig. Day two started in the Crile building or A and ended at Mellen Center on the other side of campus. Without fail, the next appointment is always on the other side of main campus. I made sure to sneak in catch up sessions with some of my favorite coworkers and friends who I hadn’t seen since before the pandemic. Jame, Brian and Amanda – if you’re reading this, you made my day.
- My RollzMotion Rollator: I’ve struggled with mobility devices, learning to use them, accepting that I had to use them, realizing how wonderful they are and that they make movement easier. This particular mobility device, which I’ve lovingly deemed Winifred, has been a game changer in my life. I was able to walk to and from check-in and my appointments but transition to being pushed when it was across campus without calling for assistance. That in itself is independence.
- Snacks and Water: My sister was a rockstar and packed everything her 2 1/2 year old loves so I benefitted from his extra chocolate covered almonds, gummy bears, crackers and fruit roll ups.
- Comfy Clothes: This is probably obvious but yoga pants, slip on shoes and layers will save time and precious energy.
I always find it amusing when you get things from doctors — branded ice packs, pens, tote bags as if I want another reminder of my extreme need for your services. But in this case, I truly appreciate the mammoth binder of collated, organized information on the transplant process and the free thermometer! I mean if you’ve seen my spice drawer, you know organization brings me peace. I totally scored.
Both days I came home and was a zombie. The first day, following blood draws, I passed out the moment I walked in the door at home. MS robs you of the ability to push through, power on, grab a cup of coffee and keep going. I have little energy and what energy I do have, I use sparingly. I am forced to make choices every day on what has to get done and what would be nice to do. I plan how and when I can use my limited supply and make decisions on everything from work to seeing family based on that day’s specific energy allocation.
Don’t ever make a person feel guilty about cancelling plans. Trust me when I say, we want to be there and already feel guilty, sad, depressed and more. Tell us it’s ok and keep asking us to join. The being asked matters as much as the being able to go.
These two days were brutal, emotional but totally worth it. I appreciate the patient navigators and schedulers who are able to fit the puzzle pieces together. In my opinion, this would be far worse spread out over multiple days and going back and forth to the hospital. Avoiding parking at main campus alone is a godsend — on the second day, the elevators were broken. Thank you to all the teams working in support of the medical professionals behind the scenes. The work you do truly impacts patients while they are actively seeking medical help and we rarely get the chance to meet you and say thanks.
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