Friday 2014-02-14
On 17 Oct last year, five weeks after my kidney treatment
began, due to continuous gum bleeding I ended back at the hospital in the
emergency room after got home from the 17th, an afternoon dialysis.
My platelet that day was 78 dropped to half from 149 on 10
Sep 13. I was staggered by the pace it dropped and panicked. In fact it didn’t
just drop within one day, instead it was a downward slope, in between I had
other tests done, and already noticed the trend and raised the issue along with
some other downward figures and upward trend for other matters to doctor T.
The emergency room was an inevitable path.
I was arranged to see doctor T again, again I voiced my concern
and the fact that I ended in the emergency confirmed my suspicion that I suffered
from heparin induced thrombocytopenia. We had a heated argument, and she
brushed me off and cited her busy schedule and walked off.
While I was sitting in the corridor and catching my breath,
the head of renal department, the renowned professor P happened to passed by, I recognised
him from his photo in many of the hospital brochures. I told him about my
story, he was not entirely convinced. From him I learned that the dangerous
level for platelet was 50 and got the impression that before I reached that
point nothing was to be done for me.
I told him that in such case, I would like to do dialysis
only twice a week which would keep me alive and would not be too much overdosed
by heparin. There’s no way he would agree to that. But I made up my mind. In
the end he agreed that I could skip Saturday and arranged for me to see a doctor
coming Monday.
I went to the appointment full of hope, only to meet the junior doctor J with a closed mind and who learned doing thing just one way.
She too wasn’t convinced about my heparin story, instead she told me that it
could be a one-off thing, that it could be the result of a careless nurse who
didn’t lock my catheter well and leaked heparin in my body that caused my low
platelet count. All indications showed she was giving me a load of rubbish. I was talking to a wall, talking more was wasting both her time
and mine.
I told her that I would like to do dialysis twice instead of
three times a week. She strongly advice against it, saying no way she would
agree to such a thing. The only thing she did for me was ordered a blood test.
The next day, after 115 hours without dialysing I took the
test. My theory was proofed the platelet came back to 142. Without doctor’s treatment
order I did dialysis twice a week for a month. During which time I had a
fistula operation, the blood test just before operation showed my platelet was
113, coagulation test APTT at 24 second, on the day I was in the emergency five
hours after dialysis APTT was 96 second, and for a normal person it is between
22 and 32.
If I didn’t take measures myself, I wouldn’t be fit for the
operating table, most probably I would be in the emergency long before that. I
was lucky the other day that I only had my gum bled. Imagine if it were
somewhere else.
I did see another doctor once, but judging from the
mannerism, it’s seems she and other previous doctors were from the same school,
I simply hold my tongue and bite my time. My luck struck when the third time I
saw a doctor. I guess this is the bright side for a public patient that you
don’t get stuck with just one person. Doctor R was more experienced and
most of all had an open mind, listened to my story and read my tests, unlike
her predecessors read only one single test result. She changed the heparin dose
from bolus 1000 unit, hourly 1000 unit to bolus unchanged, hourly 500, which means
for me, instead of taking 8000 p/w doing 2 dialysis now I can do 3 dialysis
only taking on 7500 p/w (excluding catheter heparin lock).
The new regime is not optimal, at least my body can tolerate.
Before the dose was changed my platelet was 157, after one month it remained
unchanged at 157. Obtaining doctor’s order wasn’t easy, implementing it proofed
to be even harder.
The nurse seemed unsure about the new drug chart, and
consulted her boss. Together they decided to go it slow, changing the hourly
rate to 800. That sounded fair enough. After a couple of days they had no
intention to reduce it further. In the mean time a visiting doctor P happened
to be there one day. She asked me about my case, and seemed genuinely concerned.
How deluded I was. I raised my heparin issue which back fired and created more
trouble for me.
She looked at my last test result which was after I did
dialysis twice a week for a month, she had no time for my whole story, and
concluded that my platelet was ok for a dialysis patient, but she did had the
decency to call my mother hospital. The person she talked to was the afore
mentioned doctor T who had nothing to do with me since our last encounter, naturally
responded that there wasn’t any heparin issue, that my platelet was fine. They
were looking at the same single blood test result without knowing how the
figure came to be. My heparin dose was changed right back at bolus 1000 and
hourly 1000. I would have none of that.
The next time before dialysis, I told nurse C about my
heparin dose thing and showed her the work sheet of my doctor’s visit which was
copied and given by doctor R who reduced my heparin dose and about the
moron who increased it back. Luck was on my side that day. The attending nurse
was clear minded, decisive and knew how to read doctor’s instructions. Without
further a due she gave the heparin as instructed and personally wrote out a
clear chart. To this day no matter where I went, the same order was followed.
One thing I fail to understand is that heparin is just an anticoagulation
agent, so long the line is not clotted, why do so many doctors this gung-ho in
using more rather than less, when less was already adequate.
Getting the correct treatment is not an easily thing. From the bottom of my heart I thank doctor R
who reduced my heparin dose and nurse C who implemented it. Weren’t for them I
couldn’t do three times a week, skipping sessions without doctor’s treatment
order was not an easy life to live. One needs to find all sorts of excuses not
going to dialysis and in the process trying extremely hard not to annoy the
people who were involved. It was such a stressing period of time. Even though I
know my platelet could be better, I am not that greedy, so long as my body
still could endure, I am content and still overdosed.
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