It’s been a month since my last update. My only excuse is that everything in between has been boring. For reasons not clear, my exercise tolerance has declined –even walking a couple of blocks is tiring –so I’ve mostly been staying home and getting a gratifying amount of work out the door.
There was one bit of comedy last week. I went in for routine bloodwork Wednesday: Dr. Weiss wanted to consider adjusting my dose of diuretic but wanted to see the numbers first. (He also wanted a follow-up chest X-ray to see if the pneumonia was lingering.)
Just before midnight, the phone rang. It was the lab. My hemoglobin, which had been 11.5 (slightly anemic, but not enough to warrant intervention) in January, hadplunged to 5.4, which apparently is a life-threatening level. The guy from the lab wanted me to head straight to the nearest E.D. for a transfusion, but since I had no symptoms other than the limited stamina –wasn’t pale, or feeling week or dizzy –I decided (with Gary Emmett’s advice, given from Egypt where he was on vacation) to let it ride until Thursday afternoon, when I had to go in to Weill Cornell for a routine visit with my radiation oncologist, saving me a trip.I sent an urgent email to Dr. Weiss to make sure he approved, but didn’t hear back. Thursday morning the phone rang again. This time it was Dr. Bomback, the nephrologist. He’d seen the same results and was extremely concerned, saying that at that level of anemia I was at severe risk of a heart attack or a stroke. He reluctantly agreed that a transfusion could wait until the afternoon.
So I did the work I needed to do in the morning and then headed over to Weill Cornell. Saw Dr. Sanfilippo and told him that my throat was still scratchy, myvoice still weak, and my cough still persistent. All he could say was “Too bad.” Since if there’s a recurrence of the cancer Dr. Sulica (the ENT) would be able to spot it, it’s not clear what the purpose is of seeing Dr. Sanfilippo. In any case, he pointed me to the E.D.
Headed there. E.D. was less chaotic than I might have expected. I was interviewed and examined by various folks, all of whom seemed puzzled that someone with a hemoglobin of 5.4 wasn’t obviously sick. I was obviously going to need a transfusion, and maybe more than one unit, so they decided to admit me overnight for observation, which I had not been ready for and had not packed for. Fortunately, Richard bailed me out by grabbing what I needed for an overnight from home, including my meds.
Just to make sure, the E.D. folks repeated the blood test. They then put me on a gurney, next to an incessantly bonging heart monitor, to await the results and the transfusion to follow.
We’re now about four hours (and a not-so-bad hospital dinner) into the story. At this point of of the several M.D.’s who saw me came back and said, “We took two separate blood samples and tested them both. Hemoglobin came in at 10.4 from one sample and 10.5 from the other. The result from Columbia must have been a mistake. We’re sending you home.”
Question: Did someone at Weill Cornell call the Columbia lab and tell them they’d screwed up badly? I’m prepared to be the answer is no.
At that point I was very glad that Richard’s CARE package included some books, because actually getting me out the door took another two hours.My blood pressure and heart-rate, which had been normal when I walked in, were both elevated, and the nurse who took my vitals was concerned; I attributed those effects to having to listen to the heart monitor. (For some reason, hospitals consider earplugs a luxury item.)
So I went home. Friday morning I called Dr. Weiss’s office again and left a message for him to call me. I’m still waiting for that call, but today I got a call from the Columbia diagnostic radiology department asking when I wanted to come in for my CAT scan (first I’d heard of it). Presumably that means Dr. Weiss didn’t like the look of the X-ray. Left a third message for him. If he ever calls me back, I’ll know more.
And then the good news. My sister called from Chicago. After weeks of fooling around and lots of repeated tests, the transplant team has cleared her as a donor. Apparently whether or not she’s a match for me is the call of the transplant team rather than the donor team,but if not the problem can be finessed via a “daisy chain” in which volunteer-recipient pairs who don’t match are shuffledinwith other non-matching pairsuntil every patient matches with some donor.
There’s no great urgency –my creatinine has crept up a little, but it’s still below 7 –but on the other hand sooner is probably better because until the transplant is done they can’t really treat the heart adequately. I’m hoping –how realistically I don’t now know –for later this month. Keep your fingers crossed.