Looooong Day

For those who regularly read the blogs this update will be more of the same from my post earlier in the week about them not having this down to a science yet. If you haven't read that one yet please scroll back a bit to get a sense of the sorts of frustrations that patients learn to live with, or game, along their way through treatment. The level of care at Hopkins is top-notch and I am routinely impressed by everyone from the Techs to the Attending Physicians. However, the interplay between departments can be woeful--another description of a harrowing visit to the outpatient clinic follows:

Yesterday, I knew it was coming. What I didn't expect is that my fate was sealed before I got to the outpatient clinic at Hopkins. When I arrived I was well aware that the schedule was tight. We had determined during my last visit that I would need to be transfused with platelets prior to having the 2nd round 4 spinal tap. I was arriving for a 9:00 appointment and my spinal tap was scheduled for 10:15. The only way even that was going to happen was if, and only if, the platelets were there and waiting for me at 9:00.

I'm not 100% sure what happened, but I did overhear some grumbling, complaining, even some arguing that seemed to indicate that my nurse for the day did not follow the Nurse Practitioner's orders from Monday. The nurse saw my counts from Monday, thought they were rebounding, not falling, and failed to order the platelets. Based on the false premise that blood counts were rebounding her logic was sound--I was at 48,000 platelets on Monday and only needed to be at 50,000 by Friday (according to research that I think the nurse independently gathered to determine if the platelets were necessary as I hadn't heard that threshold before). Even by my slow standard of recovering platelets in the late stages of round 3 I should have gained 10,000 or so per day taking my total to around 90,000.

But again, that was based on a false premise. The nurse should have seen the proximity of my hospital stay and realized that my counts were not likely to be rising. Having worked in HR for a number of years, and, fancying myself an astute observer of people and their behavior I was led to conclude that there is a real tension between the nurse assigned to me yesterday (the first time she had been my nurse) and my nurse practitioner who has been with me from the beginning. So my guess is that no effort was made by the nurse to verify that the platelet transfusion would not be necessary and instead put her efforts into finding fault with the nurse practitioner and undid the plan.

In the end, I arrived to Hopkins and was told by the nurse that the platelets had been canceled and why. The blood was drawn, tested, and by about 10:00 we knew that my platelet count had dropped dramatically, a transfusion was needed, and my 10:15 appointment for the spinal tap was laughable.

And so, we saw the platelets finally around 11:00. They transfused me with them over 1.5 hours to about 12:30. The nurse drew more blood to test to see what I had rebounded to and learned that I was only up to 37,000 platelets (shy of the 50,000 I needed). Based on discussions they decided to move ahead with the spinal tap while I was being transfused with more platelets. Superhuman effort was then needed to coordinate getting platelets from the blood bank, getting neural radiology to squeeze me back in, and physically getting me to that department.

I got the platelets hooked up at 2:00 or so, and was whisked away to neural radiology around 2:15 or so with the thread being that they could hold the window open for so long. I got to radiology and sat (as I normally do) for certainly more than 30 minutes (they had the same patient in there that they had when they called my nurse). My platelet transfusion had since come to an end even though I was told it was important that they be running during the procedure. Despite that, the procedure went well and I'm pleased to report that I currently am without those debilitating headaches I had in prior rounds. I wheeled out of neuro radiology around 3:45.

My earlier blood test revealed that I was also short on red blood cells. I suspected this would be necessary as I've started to recognize the symptoms--for me: pale skin, shortness of breath. As soon as this was confirmed around 10:00 I started pushing for my nurse to have the red blood cells ready for the 2 hour period where I am required to lay flat on my back following a spinal tap. The nurse confirmed to me that they were ready. I took this to mean that she had them and we'd be set to go upon my return to the outpatient clinic. Instead I returned to be informed that now they would contact the blood bank to get the red blood cells conveyed. This took its standard 30 minutes and it was 4:30 by the time the red blood cells got there.

Transfusion of a pint of blood takes 1.5 hours. I got 2 pints. That left my mother and me with a 7:30 PM departure from the appointment that began at 9:00. In essence, we opend and closed the outpatient clinic. Add drive time to this and you are looking at roughly a 14 hour day for my mom who left her house at around 7:00 AM and would get back to her house around 9:00 PM when all was said and done.

But after all that I'm feeling well, glad to scratch off spinal tap number 8, and confident that my counts should rebound by Christmas to allow me to be around family, etc. without concern. That's the best news of all.

--Russ.