I thought I was an all-star! In my third
edition of Thrombotic Thrombocytopenic Purpura (TTP), I had 9 plasmapheresis
appointments in 9 days. My platelets went from 10 to 205 and I was checked out
of the hospital. We went into the weekend, checked my platelets and they were
up to 212 - all-star!
On Saturday, we were off to celebrate the
150th year of Canada and went to see the MosaiCanada
with the spectacular plant sculptures. We even saw the plant version of Paul
Henderson and Yvan Cournoyer from the Summit Series of 1972 - all-stars! Sunday,
we were off to our vacation property, boating, skiing and swimming, even
stopped at a craft brewery for dinner. We had a great weekend.
Monday, I am still waiting for the next
part of the plan from the hematologists. I have the day off to keep recovering,
but I then start to lose eye focus. Should I sleep if off or go back to the
hospital? I decided to go back to the hospital. I called my wife to take me and
called the Apheresis Clinic to let them know I was coming back. The nurse
advised to go to Emergency to get the process started.
Arriving at Emergency, we advised I am a
TTP patient, have been checked-out last Thursday and I am now having problems
focusing with my eyes. We are advised, since I have an eye issue, I will be
examined right away. The doctor understands I have TTP, is very happy my
platelets were 212 on Saturday. They do an eye exam and set an appointment with
the hospital eye clinic. They take no blood.
After waiting a couple of hours or so at
the eye clinic, the head Apheresis nurse calls me.
"Where are you?"
"Eye clinic"
"Emergency has checked you out and I
have no blood work. I'm on it!"
Within five minutes the head nurse was at
the eye clinic and took my blood in an eye examining room - all-star, hero! My
platelets had dropped to 42. It was TTP which was affecting my eyes.
Lesson learned, you need to take care of
yourself. Emergency thought there was no issue with TTP as my platelets were
212 just two days before. No one in Emergency had any experience with TTP and
how it affects others areas of the body. We have experience. We knew TTP was
the issue. We should have insisted on an immediate blood test.
Patient supporters of any disease need to
bring their experience to the table. The patient might already be impacted and
may not be able to support themselves.
Thankfully, we had called ahead to the
Apheresis Clinic and our all-star, hero, head nurse got me back on track.
P.S. Don’t go to the eye clinic for TTP.
Thanks, Bruce.
@BruceFightsTTP
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