008 - Pre Transplant Testing

Two Steps Forward, One Step Back

On Saturday January 14th, I flew to Denver for what I thought would be six days to complete my pre-transplant screening and testing — officially known as “restaging” in the oncology/transplant world. Thankfully, I am not going through chemotherapy yet, so I was able to stay and visit with my Aunt Karin, Uncle Guy, and cousins. On Monday morning, my Aunt took me to Presbyterian St. Luke’s Hospital — I needed to have a driver or I would not have been given any anesthesia for the bone marrow biopsy.

Bone Marrow Transplant (BMT) Restaging Blood Draw

After meeting with my transplant coordinator, an absolutely incredible nurse named Callee, I got to meet with my transplant physician (Dr. Nash), got tested for COVID, and got the bone marrow biopsy. Going into the week, I was the most worried about the bone marrow biopsy and the lumbar puncture. The biopsy was thankfully a piece of cake courtesy of my anesthesiologist’s cocktail of Fentanyl and Versed. I eventually went back to my Aunt and Uncle’s house and slept for the rest of the afternoon and night.

Tuesday began with meeting the HSCT study neurologist, Dr. Datar. During our appointment, Dr. Datar went through my entire medical history, performed an exhaustive neurological exam, a cognitive exam, and provided me with my pretransplant EDSS score of 4.0. The Expanded Disability Status Scale (EDSS) is a tool used by neurologists to measure the level of neurological disability in MS patients. The scale goes from zero to ten, with zero being no neurological deficiency and ten is death due to MS. I go more in-depth to the EDSS here, and if interested you can read about the scale here. EDSS is to HSCT as porridge is to Goldilocks — the score cannot be too high or too low, it needs to be just right. Oncologists and Neurologists do not want to transplant patients who do not have significant neurological disfunction from MS, nor do they want to transplant patients who are too disabled (EDSS >6.0). Thankfully, my EDSS of 4.0 is just right for transplant.

After meeting with Dr. Datar, I went back to Presbyterian St. Luke’s for my lumbar puncture and to meet with the social worker who is assigned to the bone marrow transplant group. The lumbar puncture was everything that I was dreading it to be. After being in an exam room for roughly an hour, two different providers, and four unsuccessful LP attempts they decided that they would do the LP with radiology. I left the room and went to my appointment with the social worker.

All patients who are undergoing transplant meet with a LCSW before, during, and after transplant. The first appointment is to understand the patient’s past and current state of their mental health, if the patient is mentally competent to undergo transplant, what their support system looks like, and if they have the necessary structure in place to take care of their physical, mental, and emotional well being during the transplant process. At the end of our appointment, my social worker walked me to the radiology department to do the LP — when everything goes to shit.

As I lay on the table in interventional radiology, the phone rings and my patient coordinator informs them that I have tested positive for COVID-19 on a PCR and they were halting all of my testing, including the LP. I told the radiologist that I was shocked because I just had COVID in November. She then says, “Fuck it, let’s just do the LP. I doubt you have COVID right now. If you do, we both have been exposed already.” The fifth time was the charm, and they were able to get enough cerebrospinal fluid (CSF) for the test. I drove back to my aunt and uncle’s house devastated that I was being sent home without all of the testing done.

I woke up early the next morning (Wednesday) with a pretty bad headache and decided to take a COVID test — it was negative. I took two more tests made by different manufacturers and they were all negative. After a consult with my Epidemiologist friend and Dr. Google, I learned that people can test positive on a PCR for weeks, if not months, after they no longer have symptoms. I did not want to go back to Spokane without completing the tests — I didn’t have an active COVID infection! I got on the phone to call my patient coordinator to figure out our plan going forward. Thankfully, she had already been advocating for me with Dr. Nash to reschedule all of my tests if I was negative on a rapid test and he agreed. His conditions were that I schedule the Pulmonary Function Test (PFT) in Spokane because he does not want to contaminate the test equipment and that I take a course of Paxlovid. Even though I was eight weeks post symptoms, he was hoping that it would help my compromised immune system clear the virus, as they will not start the transplant until the patient is testing negative on PCR for COVID. Callee called me a few hours later to let me know that all of the other tests, minus the PFT and Echo, were scheduled for the following Tuesday. Did it suck that I needed to stay in Denver for a few extra days? Yes. The positive is that all of those tests were able to be scheduled for a single day and I would get to go home in less than a week.

After pacing in the bedroom dealing with everything, my head was still killing me. So I took some ibuprofen and decided to lay down. Within ten minutes of laying down, my headache was gone and I decided I would take a shower. I had to finish my shower quickly because my headache was back with a vengeance. Just as before, with ten-to-fifteen minutes of laying down, the headache would go away and I quickly realized that I was having a spinal headache. A spinal headache, for those of you who are like me and did not know, is a possible complication of procedures like an epidural or a lumbar puncture. The hole created in your spinal column membrane from the procedure doesn’t close and it begins leaking CSF, reducing the pressure exerted on the brain, causing a headache whenever you’re not in a horizontal position. I read that the hole can close on its own within 48 hours, so I decided to see how I felt the next morning.

Forty-eight hours later, my head was still killing me. I reached out to my patient coordinator and I was unable to get booked for a blood patch before the end of the day, meaning I had to wait until Monday for any treatment. After spending the weekend in bed, I got a blood patch on Monday morning and started to feel better by the evening. Tuesday was a day filled with imaging appointments. First came the radiation — CT scans of my head, sinuses, and chest; followed by a chest X-ray. I then got changed into scrubs for the MS suite of MRIs — scans of my brain, c-spine, and t-spine with and without contrast. I finished the day with a quick EKG and headed back to the house to pack for my flight the next morning.

Back In Spokane

Once I landed in Spokane, I got a voicemail saying that the CT scan showed sinusitis, which I hadn’t felt yet but would in the next 24 hours, and they wanted me to be seen by doctor at home. I took a quick trip to Urgent Care, got onto antibiotics, got a negative PCR COVID test, and was referred to an ENT for a follow up. I spent the weekend with the family and tried to not stress out about scheduling the two tests needed for the transplant. By the end of the next week, my neurologist in Spokane ordered the Echo and PFT, we were just waiting for insurance approvals. Last week was spent waiting for insurance approvals and scheduling the appointments. The appointments were this week, and we now have results for all of the pretransplant labs. None of the labs have discovered any exclusion criteria and my doctor has cleared me for transplant. All of the labs and the transplant referral have been submitted to my insurance company for final approval, which should be done in the next seven-to-ten days.

As of right now, I should be heading to Denver in roughly three weeks to start the transplant process. The biggest risks to a delay would be me getting COVID or this sinus infection not going away — I need a clean sinus CT before I can start chemotherapy. I am hoping that I can spend these last few weeks with my beautiful family, while taking care of last minute things like taxes and house work. Thank you to each and every one of you for joining our family on this journey. Expect an update once I have the results of the sinus CT, during the week of March 6th.