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Polycythemia Vera

fooligan

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Polycythemia vera is an abnormal increase in blood cells (primarily red blood cells) resulting from excess production by the bone marrow.

Polycythemia vera is an acquired disorder of the bone marrow that causes the overproduction of all three blood cell lines: white blood cells, red blood cells, and platelets.

It is a rare disease that occurs more frequently in men than women, and rarely in patients under 40 years old. It is not known what causes polycythemia vera.

The disease usually develops slowly, and most patients do not experience any problems related to the disease after being diagnosed. However, the abnormal bone marrow cells may begin to grow uncontrollably in some patients leading to acute myelogenous leukemia.

Patients with polycythemia vera also have an increased tendency to form blood clots that can result in strokes or heart attacks. Some patients may experience abnormal bleeding because their platelets are abnormal.
link

I was diagnosed with this two years ago, while in the hospital for chest pains (turned out to be stress-related)... they had to drain two pints of blood from me, and kept me for another day, when they drained another pint. Basically my blood is too thick, and draining off a pint or two thins it for a while.

My question is: is there any way for me to siphon off my own blood occasionally? Self-phlebotomy? This isn't a joke... it needs to be done but I don't have medical insurance and the bills are killing me (NPI). Any doctors in the house?
 

black wolf

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fooligan said:
link

I was diagnosed with this two years ago, while in the hospital for chest pains (turned out to be stress-related)... they had to drain two pints of blood from me, and kept me for another day, when they drained another pint. Basically my blood is too thick, and draining off a pint or two thins it for a while.

My question is: is there any way for me to siphon off my own blood occasionally? Self-phlebotomy? This isn't a joke... it needs to be done but I don't have medical insurance and the bills are killing me (NPI). Any doctors in the house?
I know acetylsalicylic acid will reduce the risk of clotting by about 60%, but other than that:shrug:
all the best to you
 

fooligan

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black wolf said:
I know acetylsalicylic acid will reduce the risk of clotting by about 60%, but other than that:shrug:
all the best to you

Thanks, I'll figure something out... I need a source for those I.V. needles :lol:
 

Korimyr the Rat

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Try searching Froogle for "hypodermic". You can get the syringes for cheap at a craft store.

Just be sure to practice good hygiene-- boiling & bleach, both for the needles and for the syringes. Last thing you want to do is give yourself an infection.

edit: Never mind. Needles are apparently restricted now. Absolutely bloody ridiculous...

You could try talking to your doctor about it. Explain the situation with your health insurance. Since you don't have a bunch of track marks, you can make a pretty good case that you're not a junkie. It's just like getting a shot kit for a diabetic.
 
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bandaidwoman

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Donate blood to the red cross regularly until your hematocrit is below 45 then you can probably do it just a few times a year. And take a low dose asprin to prevent thrombotic complications. (European Collaboration on Low-dose Aspirin in Polycythemia Vera (ECLAP), found aspirin efficacious for preventing thrombosis and controlling microvascular painful symptoms )
 

Korimyr the Rat

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Considering that he's suffering specifically from a blood disorder, do you think that the Red Cross will actually allow him to donate?
 

Kelzie

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Korimyr the Rat said:
Considering that he's suffering specifically from a blood disorder, do you think that the Red Cross will actually allow him to donate?
I'm going with no. I live in Europe and they won't allow me to donate.
 

Naughty Nurse

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I would suggest that you don't bleed yourself. You still need to have your tests done, which presumably makes up the largst part of the costs? Also if you bleed yourself too much / too little you could be doing more harm than good.

No way to get this free? (I'm going to resist making any comments about nationalised health care).
 

bandaidwoman

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Korimyr the Rat said:
Considering that he's suffering specifically from a blood disorder, do you think that the Red Cross will actually allow him to donate?

Yes, in fact that is how I treat my uninsured patients. Polycythemia vera is an overproduction of normal cells, so there is no reason why they can't donate normal red blood cells. It is pathological to the patient because the over production causes sludging. The red cross loves people with polycythemia vera because they become regular donors.


These are the guidelines for red cross donation. Notice, polycythemia vera is not an exclusion. http://www.redcross.org/services/biomed/0,1082,0_557_,00.html#can
 
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bandaidwoman

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Naughty Nurse said:
I would suggest that you don't bleed yourself. You still need to have your tests done, which presumably makes up the largst part of the costs? Also if you bleed yourself too much / too little you could be doing more harm than good.

No way to get this free? (I'm going to resist making any comments about nationalised health care).

This is the free treatment for polycythemia vera. I would be culpible of medical malpractice and negligence if I told these folks to not to get bled on a regular basis. If they go on to have strokes, splenomegaly etc. The red cross always checks a hematocrit so they don't bleed anemic people. There are immunosuppressive drugs (hydroxyurea etc.) for polycythemia vera that requires extensive blood testing and monitoring which are expensive if you have Folligan has no insurance. These medicines do allow for patients the freedom to not phlebotimize regularly.
 
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Naughty Nurse

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bandaidwoman said:
This is the free treatment for polycythemia vera. I would be culpible of medical malpractice and negligence if I told these folks to not to get bled on a regular basis.
Absolutely. I was just suggesting that he didn't go down the road of self-treatment. Glad to hear that they can get free treatment.
 

Korimyr the Rat

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bandaidwoman said:
Polycythemia vera is an overproduction of normal cells, so there is no reason why they can't donate normal red blood cells. ... The red cross loves people with polycythemia vera because they become regular donors.
Duly noted. I will therefore second your suggestion. It sounds like the most effective way of handling the problem.
 
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