Low Platelet Queen Reigns Again
I am sooooooo discouraged right now. As I posted earlier this week, my platelet count on Monday morning was 3, so they immediately gave me a platelet transfusion, the first one in almost 6 months.
We planned for me to follow up late yesterday afternoon (Thurs) getting my counts done again, so that they could see if I might need
platelets before the weekend, or if it would be safe to let me go til next Tuesday when I have my next appt.
My platelet count at 4:30 yesterday afternoon was 1. Of course, it was too late to do a transfusion at the Cancer Care Center, which
closes at 5:00. They told me to rush to the ER at the first sign of bleeding, and they called the blood bank and reserved some platelets
for this morning. However, I was a BIT nervous about going home and waiting for morning by myself. I came over to Jack's and drove him
nuts, because he felt like he had to watch me all night to make sure I wasn't bleeding. A fun time was had by all--not!
On the lymphoma listserve I belong to, one of our members, Teri, died suddenly this week from a sudden brain bleed. She was doing fine, checking her email and suddenly she had this tremendous pressure in her head. They rushed her to the ER, but she died. You can probably guess that Teri's story of the sudden brain bleed had a big effect on me. Not only do I feel bad for her and her family, but it really brought home how dangerous my situation is at times. I have tended to be pretty blase about low platelet counts.
Of course, as you can tell since I'm writing this to you, all was well all night. I have a few small bruises, but nothing dramatic. My gums didn't even bleed when I (gingerly) brushed my teeth. Those little platelets are still mighty, few though they may be. I just hope the transfusion this morning will be more effective than the one I got on Monday! I think I'm going to ask them to do a follow up CBC to see how much of a boost I got from the transfusion. I think that is possible. It will help me relax and enjoy the nice spring weekend.
Monday, April 21, 2003
I'm on the "Far Side"
I guess I'm playing that game again. How low can I go? My platelet count was 3 today. I had to get my first platelet transfusion in almost 6 months. Last one was 11/5/02. Been there, done that, got the t-shirt.
Also back on Procrit for my hemoglobin, which was down to 9.
I was QUITE the cranky patient today, so of course this is when they're initiating the new privacy law procedures, which are on the far side of ridiculous, because no one with any common sense has had to deal with them yet. I rebelled and refused to wear my "visitor" tag (no name) to a place I'd been coming for 9 YEARS (at times EVERY DAY) in order to get my blood drawn and my chemo. I had a few choice words about where the committee could stick their little non-name tags and marched down the hall in righteous indignation, singing, "We shall overcome..." Okay, so I'm crashing from prednisone too, but that didn't affect my actions one bit.
Like no one would be able to tell that I'm a patient from the bruises on my arms and the stupid orange folder I have to carry around for billing purposes... Oh no, they'll be fooled by my generic visitor name tag and my privacy will be maintained. Oh, and now they have (empty) GREEN folders for the specific purpose of covering up my name on my chart when it's sitting on the counter while I get my IV...
I sat in my little chair, reading the "Far Side" comic book Jack lent me and wondering "Which is the far side???" I especially got a kick out of the woman who was wheeling her IV pole with her to the bathroom WHILE WEARING A VISITOR TAG SO NO ONE WOULD KNOW SHE'S A PATIENT!!!
Okay, I'm done now...
--------------
Later that same day...
Responses to "The Far Side"
This is too good to keep to myself. I sent my (wonderful) doc the same email I sent to the list, except I called it the lunacy of oganizational procedures. Here's his response:
----
From: "Timothy Lestingi, M.D."
To:
Subject: RE: the lunacy of organizational procedures
Date: Mon, 21 Apr 2003 17:48:56 -0500
Believe it or not, I agree with you on the privacy law issue, but this is what happens when the government gets involved with most issues in health care. Too much regulation in area that should be common sense (Oh, I didn't know that I shouldn't use a patient's name when I'm telling humorous cancer patient stories at a cocktail party - as if there are any.) But don't do anything about someone's access to a life saving medication because it's only available in pill form. If you really want to do something, write a letter to your congresswoman, Jan Schakowsky, (who is also the congresswoman for the hospital), and tell her how ridiculous these new laws are. Also tell her how your oncolgist's office estimates it will cost another $5 - 10,000/yr to comply with these laws while congress is busy voting to reduce reimbusement for cancer treatments.
See you soon - and hopefully off steroids.
Tim
-----
And not only that, here's my brother the hospice administrator's response to my email:
From: "Zwicky, David"
To: "'judith.weinstein@attbi.com'"
Subject: RE: I'm on the "Far Side"
Date: Mon, 21 Apr 2003 14:44:20 -0700
Welcome to my world as Privacy Officer for our entire company! We asked the government to write these regulations!
Love, your brother
Dear Brother,
We (in the royal sense of the word, since I'm having delusions of grandeur today...) are not amused. Do you ever feel you have fallen down a rabbit hole on your way to work? Or perhaps passed Rod Serling on the expressway? :-|
Love, your sister
----
Well, I am having some fun now. Much more amusing to read these things than to live them...
I guess I'm playing that game again. How low can I go? My platelet count was 3 today. I had to get my first platelet transfusion in almost 6 months. Last one was 11/5/02. Been there, done that, got the t-shirt.
Also back on Procrit for my hemoglobin, which was down to 9.
I was QUITE the cranky patient today, so of course this is when they're initiating the new privacy law procedures, which are on the far side of ridiculous, because no one with any common sense has had to deal with them yet. I rebelled and refused to wear my "visitor" tag (no name) to a place I'd been coming for 9 YEARS (at times EVERY DAY) in order to get my blood drawn and my chemo. I had a few choice words about where the committee could stick their little non-name tags and marched down the hall in righteous indignation, singing, "We shall overcome..." Okay, so I'm crashing from prednisone too, but that didn't affect my actions one bit.
Like no one would be able to tell that I'm a patient from the bruises on my arms and the stupid orange folder I have to carry around for billing purposes... Oh no, they'll be fooled by my generic visitor name tag and my privacy will be maintained. Oh, and now they have (empty) GREEN folders for the specific purpose of covering up my name on my chart when it's sitting on the counter while I get my IV...
I sat in my little chair, reading the "Far Side" comic book Jack lent me and wondering "Which is the far side???" I especially got a kick out of the woman who was wheeling her IV pole with her to the bathroom WHILE WEARING A VISITOR TAG SO NO ONE WOULD KNOW SHE'S A PATIENT!!!
Okay, I'm done now...
--------------
Later that same day...
Responses to "The Far Side"
This is too good to keep to myself. I sent my (wonderful) doc the same email I sent to the list, except I called it the lunacy of oganizational procedures. Here's his response:
----
From: "Timothy Lestingi, M.D."
To:
Subject: RE: the lunacy of organizational procedures
Date: Mon, 21 Apr 2003 17:48:56 -0500
Believe it or not, I agree with you on the privacy law issue, but this is what happens when the government gets involved with most issues in health care. Too much regulation in area that should be common sense (Oh, I didn't know that I shouldn't use a patient's name when I'm telling humorous cancer patient stories at a cocktail party - as if there are any.) But don't do anything about someone's access to a life saving medication because it's only available in pill form. If you really want to do something, write a letter to your congresswoman, Jan Schakowsky, (who is also the congresswoman for the hospital), and tell her how ridiculous these new laws are. Also tell her how your oncolgist's office estimates it will cost another $5 - 10,000/yr to comply with these laws while congress is busy voting to reduce reimbusement for cancer treatments.
See you soon - and hopefully off steroids.
Tim
-----
And not only that, here's my brother the hospice administrator's response to my email:
From: "Zwicky, David"
To: "'judith.weinstein@attbi.com'"
Subject: RE: I'm on the "Far Side"
Date: Mon, 21 Apr 2003 14:44:20 -0700
Welcome to my world as Privacy Officer for our entire company! We asked the government to write these regulations!
Love, your brother
Dear Brother,
We (in the royal sense of the word, since I'm having delusions of grandeur today...) are not amused. Do you ever feel you have fallen down a rabbit hole on your way to work? Or perhaps passed Rod Serling on the expressway? :-|
Love, your sister
----
Well, I am having some fun now. Much more amusing to read these things than to live them...
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