F
flutterbee
Guest
I was wondering if you had a Travis update. How is he doing? Anything on the test results or new doctor?
He's been in my thoughts.
He's been in my thoughts.
Hound dog
Nana's are Beautiful
Thanks for asking Heather.
My son, the rarity. You'd be surprised at how old that can get.
The tests came back ok. Or so the oncologist said. No cancer. Good thing. Yes it is.
BUT (and with this kid there is always a BUT) She can't account for the fact that his blood cell counts are no longer extremely high. Polycythemia is not a disease that self corrects. I know via my own research and because I pinned her down on that this time once and for all.
Yet he still has polycythemia because of what was going on during the time of diagnosis. ugh
Still working on that second opinion. I'm hoping to find someone with some experience with this if I can.
Personally, and this is gonna sound awful, I think the lab at our hospital might be messing up the samples. Wouldn't surprise me, not after doing my clinicals there myself. I KNOW how some of them draw blood and it's not the proper way. I know how they handle the vials. Also not proper for accurate results.
diagnosis the oncologist is positive is dead on. Travis' blood was tested by 3 different labs, 2 doctor offices, and the bone marrow came back abnormal as h*ll.
What POed me the most is that she and I both know what can cause his cbc to drop back within a fairly normal range. A bleed. Has she tested for that possiblity? No. Nothing. Doesn't have to be a huge bleed either. A small stroke would be enough. And many of those go unnoticed.
So I'm hunting down a doctor for that 2nd opinion. And I'm trying like heck to find one who has treated polycythemia so they can at least have some experience to draw on. This doctor admitted she's never come across it before. ugh
So it's still a work in progress. Meanwhile the boy has dropped another 5 pounds. In the course of about 6 mos he went from a size 38 to a size 32 being a bit too big.
Sorry. Didn't mean to unload like that on you. We just saw her the other day and it's still a touchy subject with me. I get furious everytime I think about it.
((hugs))
My son, the rarity. You'd be surprised at how old that can get.
The tests came back ok. Or so the oncologist said. No cancer. Good thing. Yes it is.
BUT (and with this kid there is always a BUT) She can't account for the fact that his blood cell counts are no longer extremely high. Polycythemia is not a disease that self corrects. I know via my own research and because I pinned her down on that this time once and for all.
Yet he still has polycythemia because of what was going on during the time of diagnosis. ugh
Still working on that second opinion. I'm hoping to find someone with some experience with this if I can.
Personally, and this is gonna sound awful, I think the lab at our hospital might be messing up the samples. Wouldn't surprise me, not after doing my clinicals there myself. I KNOW how some of them draw blood and it's not the proper way. I know how they handle the vials. Also not proper for accurate results.
diagnosis the oncologist is positive is dead on. Travis' blood was tested by 3 different labs, 2 doctor offices, and the bone marrow came back abnormal as h*ll.
What POed me the most is that she and I both know what can cause his cbc to drop back within a fairly normal range. A bleed. Has she tested for that possiblity? No. Nothing. Doesn't have to be a huge bleed either. A small stroke would be enough. And many of those go unnoticed.
So I'm hunting down a doctor for that 2nd opinion. And I'm trying like heck to find one who has treated polycythemia so they can at least have some experience to draw on. This doctor admitted she's never come across it before. ugh
So it's still a work in progress. Meanwhile the boy has dropped another 5 pounds. In the course of about 6 mos he went from a size 38 to a size 32 being a bit too big.
Sorry. Didn't mean to unload like that on you. We just saw her the other day and it's still a touchy subject with me. I get furious everytime I think about it.
((hugs))
F
flutterbee
Guest
Lisa,
Don't apologize for unloading. It's why we're here.
I know you sought out an oncologist because of your concerns, but do you think a hematologist might be better? I'm wondering since it's a blood disease - and a rare one at that - if a blood doctor would be better.
I know it's a hike, but have you thought about The Cleveland Clinic?
I also wanted to mention...I don't know if it's still the case and getting any info out of easy child is like pulling teeth, but my Mom worked at Kroger about 15 years ago and they offered health insurance to their part time employees. I seem to remember that being an issue. You might want to check into that and see if they still offer it.
It's so incredibly frustrating when you *know* there is something up and the doctors have no sense of urgency. If she doesn't know, she should be referring you to someone who does. It just makes you want to rip your hair out. And theirs.
(((hugs)))
Don't apologize for unloading. It's why we're here.
I know you sought out an oncologist because of your concerns, but do you think a hematologist might be better? I'm wondering since it's a blood disease - and a rare one at that - if a blood doctor would be better.
I know it's a hike, but have you thought about The Cleveland Clinic?
I also wanted to mention...I don't know if it's still the case and getting any info out of easy child is like pulling teeth, but my Mom worked at Kroger about 15 years ago and they offered health insurance to their part time employees. I seem to remember that being an issue. You might want to check into that and see if they still offer it.
It's so incredibly frustrating when you *know* there is something up and the doctors have no sense of urgency. If she doesn't know, she should be referring you to someone who does. It just makes you want to rip your hair out. And theirs.
(((hugs)))
Star*
call 911........call 911
Daisy -
Prayer from this board is a powerful thing. And Wyntersgrace had a great idea. I was thinking John Hopkins. GOOGLE - Doctors treat polycythemia and see what comes up - or CALL a cancer center and see what they recommend.
Hugs - your account of a hospital lab is scary as he**
WOW
And you KNOW what you're talking about - the rest of us that do not - it's worse I think.
I'm glad I know a nurse (you) I can ask all kinds of weird questions.
Hugs
Star
Prayer from this board is a powerful thing. And Wyntersgrace had a great idea. I was thinking John Hopkins. GOOGLE - Doctors treat polycythemia and see what comes up - or CALL a cancer center and see what they recommend.
Hugs - your account of a hospital lab is scary as he**
WOW
And you KNOW what you're talking about - the rest of us that do not - it's worse I think.
I'm glad I know a nurse (you) I can ask all kinds of weird questions.
Hugs
Star
amazeofgrace
A maze of Grace - that about sums it up
Prayers of support, healing and wisdom coming your way
Hound dog
Nana's are Beautiful
Star
I didn't mean to give you the willies about hospital labs in general. Most are anal about how the blood is drawn and the vials handled, and they have to be. Certain tests require you to do certain things. All blood is drawn for different tests in different vials. Depending on the test, a vial will contain ingredients that make the test work properly. These vials have to be inverted a certain number of times in order to mix the blood and the ingredients properly for the test to come out accurate.
I'm having trouble buying the results of Travis' blood tests because the last to times they attempted to finger stick him for the cbc. Standard procedure. Blood goes into a capillary tube and into the machine. The problem was that each phlebotomist doing the finger sticks is damn good. (I know them) Travis is the 1st person I've ever seen either of them not be able to get a finger stick on. And I worked with them a whole month. Why? Because his blood clotted almost immediately. And the next draw had to be with the needle and vial.
Yet his platelet count came back " high-normal". (platelets are a big factor in blood clotting) Now that just doesn't make sense.
Other labs have their problems. Ours just happens to be really bad this way. The state is trying hard to regulate it by requiring certification and schooling. But those that have been doing it forever without schooling were grandfathered in. Many (not all) of those people are the problem. They haven't got a clue as to the whys for the procedures and think it's no big deal.
And ours is a rural small hospital. Another strike against it. easy child says she has caught the hospital labs where she works several times with obvious mistakes and had to make them re-take the blood draws and test it again. Very scarey when she works in the ICU.
I didn't mean to give you the willies about hospital labs in general. Most are anal about how the blood is drawn and the vials handled, and they have to be. Certain tests require you to do certain things. All blood is drawn for different tests in different vials. Depending on the test, a vial will contain ingredients that make the test work properly. These vials have to be inverted a certain number of times in order to mix the blood and the ingredients properly for the test to come out accurate.
I'm having trouble buying the results of Travis' blood tests because the last to times they attempted to finger stick him for the cbc. Standard procedure. Blood goes into a capillary tube and into the machine. The problem was that each phlebotomist doing the finger sticks is damn good. (I know them) Travis is the 1st person I've ever seen either of them not be able to get a finger stick on. And I worked with them a whole month. Why? Because his blood clotted almost immediately. And the next draw had to be with the needle and vial.
Yet his platelet count came back " high-normal". (platelets are a big factor in blood clotting) Now that just doesn't make sense.
Other labs have their problems. Ours just happens to be really bad this way. The state is trying hard to regulate it by requiring certification and schooling. But those that have been doing it forever without schooling were grandfathered in. Many (not all) of those people are the problem. They haven't got a clue as to the whys for the procedures and think it's no big deal.
And ours is a rural small hospital. Another strike against it. easy child says she has caught the hospital labs where she works several times with obvious mistakes and had to make them re-take the blood draws and test it again. Very scarey when she works in the ICU.
