Things had settled down to a routine. Dialysis 3 afternoons per week, M-W-F.
At the hospital, they told me it was 3 hours, and it was. Now at the outpatient
dialysis center, it turns out to be 2:30 PM to 6:45 PM. The outpatient dialysis
center is one of a series of for-profit networks which are rather like managed
care. Their primary goal is to make corporate money, with patient care a
secondary item. It's a good investment, though, for those interested in making
money. They are staffed by technicians and a couple of nurses. A nephrologist
occasionally wanders through, taking a perfunctory listen to the heart to
make sure you are alive. How much do you think a nephrologist makes in a
15-minute stroll through the center which has 25 patients lined up around
the room in La-Z-Boys, with machines humming beside them? The staff are immature
and indiscreet. They make deragatory remarks about various patients. They
huddled in groups and gossip. Once an old black woman who had come in early
in the morning (although her appointment was at 2:30 PM) was there for the
whole day. By 4 PM, she started whining, "I haven't had anything to eat all
day. I'm diabetic. Won't anyone help me." The response of the staff was to
come over and berate her for trying to sneak in early, telling her she had
made her own troubles. She began to weep and shout and threaten. They told
her that if she didn't like lit she could go to another center. How much
easier it would have been to give her a candy bar. But this place won't even
give you a sip of water. You have to bring your own. You have to bring your
own blanket (it's freezing inside). There are TVs on which you can watch
Dr. Phil tell women they are losers.
I've been very good on my diet, low sodium and low potassium. I was so
good, that one potassium came back below normal. So I increased the potassium
in my diet. The next time I came in I asked for a serum potassium, but the
nurse refused, "You get bloods every Monday, and that's it." I explained the
circumstances. She was unmoved. "The insurance won't pay for it," she explained.
Ah! The light dawns!
On Wednesday, I insisted on a potassium level, and they finally acceded,
"But this is the last time!" As it happened, they also drew a blood count.
I have been chronically anemic because of the impaired kidney function. But
now they were giving me erythropoietin (Procrit) to stimulate blood production,
and it seemed to be working. At the end of the day on Wednesday, however,
the nurse came by and said, "Your hemoglobin is 7.5 mg (very, very low). Would
you like a transfusion?"
"Would I like a transfusion? No one has ever asked me such a question.
I've been asked, would you like a veal chop or a steak, but never a transfusion.
I've been told I'm getting a transfusion, but it's really not my decision.
What does Cottiero (the nephrologist) say?"
"Well, we called him, and he said it was probably a normal variation, and
he wouldn't do it, but he said if you wanted one, you can have one." Oi veh!!
I told her no thanks, but on the way out, I asked, "Angie, don't you think
it would be a good idea if I took home some cards to test for occult blood
in the stool?"
"Well, I guess if you want to, you can do it," and she gave me some cards.
Any first-year medical student knows to do this. Why do I have to be my own
doctor?
Years ago, I used to question my Uncle Jack, who was the consummate internist,
for meddling (as I saw it) in the medical care of everyone in the family.
Now I realize that it was absolutely necessary. If you are not a doctor who
can watch out for himself, terrible things can happen to you at the hands
of the medical establishment.
Thursday morning, I smeared a card with very dark stool ( a sign of blood
coming down from above), went out for a nice breakfast at Joe's, and took
the card to Cottiero's office. I asked them to test the card for guaiac. They
told me to leave it in the box. I insisted they do it right then and there
while I waited. They did, and it was positive for blood.
I called Jim Myers, who is my consummate internist, who said, "We have
to scope you up and down. We can do it one day." Then he called back, after
talking with the gastroenterologist, who said, that it was important to begin
with an endoscopy (examination of the stomach through a fiber optic scope
slid down the esophagus) immediately to make sure we were not dealing with
a runaway bleed. I would be admitted to the Miriam that day.
While I waited for the Miriam to call, I went over to Bread and Circus
and bought some very fresh bluefish, cheap. Carol came home at 7:30 PM, made
a fabulous preparation with mustard and mayonnaise, and we checked into the
Miriam. My old friend, Joao Tavares, the hospitalist, was there to take care
of me. He gave me two units of blood overnight.
The next morning, I went down to endoscopy at 8:00 AM. Herb Rakatansky
was waiting for me there. I begged and pleaded for lots of Versed, the magic
medicine that knocks you out for just a few minutes and leaves no hangover.
I saw the huge endoscope hanging nearby, ready for use. I watched them inject
the Versed and Fentanyl into my i.v. The next thing I knew, Herb was standing
over me, asking, "Are you ready?" He had already finished the procedure, and
I was wide awake, alert, feeling no pain.
What he found was a diffuse gastritis, with a small duodenal ulcer. The
cause was uncertain. I have very low platelets, and I bruise and ooze easily.
And I guess I'm under some stress. They put me on an acid blocker (like the
"purple pill," and I went upstairs, where Carol brought in the rest of the
bluefish for lunch. She has been so wonderful through all this. What would
I do without her? She does it with grace, but it takes its toll. I went up
to the hospital dialysis unit in the afternoon. What a difference! It's like
going to a spa where they know what they're doing and take care of you. I
got one more unit of blood during the dialysis. We were home at 7:00 PM for
Shabbes dinner, a divine dish of brisket with kashe varnishkes and
spinach.
This morning my stool was brown,
so I guess I've stopped bleeding. Tuesday I go up to the Mass General for
a preliminary consult with Dr. Deck, the heart transplant surgeon. Wednesday,
I have my right carpal tunnel sliced by Dr. Arnold-Peter Weiss at Rhode Island
Hospital. Thursday I go for a vein mapping of my arms to see where the vascular
surgeon can best create a fistula (a joining of a large artery and vein to
use for permanent hemodialysis. The following week, I have the fistula created.
That's all for now.