I’m still getting the hang of this polycythemia thing.
You see, my blood is too thick. Too many red blood cells. That makes my blood turn to sludge, and sludgy blood is not good. Not only does it put me at higher risk of heart attack, stroke, and pulmonary embolism, it makes me feel as if I’m full of sludgy blood, which means every cell in my body feels heavy and slow and, well, sludgy.
You’d think that feeling would be easy to recognize. The thing is, it’s insidious. I start feeling bad and, because I’ve had fatigue problems for the past few years, I just accept it, even as it gets worse than usual. And then I finally realize, “Oh, yeah, I’ve got that thick blood thing, too … maybe it’s time to get drained.”
Getting drained, or, more formally, phlebotomy, is the treatment for polycythemia. But because I also have ADHD, I sometimes have a hard time anticipating what might be coming; I’m busy trying to keep my present from falling apart. I know I feel like crap, but I forget that it could be because it’s that time again. I've only had two phlebs thus far, and they were about six months apart. And I'm coming up on another six months. (Some polycythemia sufferers have them far more frequently than this.)
At my last visit to my hematologist about a month ago, my hematocrit was somewhere around 46. Okay, so here’s a little lesson in your body’s red blood cells. “Red blood cells perform the most important blood duty. A single drop of blood contains millions of red blood cells which are constantly traveling through your body delivering oxygen and removing waste. If they weren't, your body would slowly die” (The Franklin Institute).
And you know what happens when things get all gunked up and turn to sludge. They don’t move real well, so if anything’s waiting for them to roll along, such as your body’s tissues, good luck. Think oil in your engine or sewage in your pipes. You don’t want that stuff just sitting there.
A Complete Blood Count (CBC), a common lab test, can reveal whether or not one’s red blood cells are in balance. Two readings matter here—the hemoglobin (Hb) and hematocrit (Hct).
Now, it’s interesting that so many health professionals I’ve run into use the hemoglobin level, not the hematocrit, to determine whether or not a patient needs a phlebotomy.
You see, when the red blood cells are too thick, the treatment is as old as medicine itself: your blood is let. You know, what used to involve leeches. Fortunately, nowadays you just sit in a recliner and a nurse comes at you with a very large needle. (No lie—For my first phlebotomy, the nurse said, “I wouldn’t want anyone putting this huge needle in my arm.”) Over about ten minutes a huge jug o’ blood is filled, and that’s it. In my case, that blood is doubly tainted; too thick and infected with Hepatitis C. No chance even a vampire hospital would want that stuff, so into the biotoxins bucket it goes.
Gives one a warm and fuzzy feeling. Your life's blood, a biotoxin.
The fun part is that they bring you soda and crackers and a sandwich and candy, and I say, “Bring it on!” My diet is so bad nowadays that any food has to be welcomed by my body's cells.
Now, the number that I believe matters more in determining whether or not one is needing a phlebotomy is the hematocrit. “The hematocrit measures the volume of red blood cells compared to the total blood volume (red blood cells and plasma). The normal hematocrit for men is 40 to 54%; for women it is 36 to 48%.” This is what the Franklin Institute says, but the date on that info is 1990, and that info is wrong. [Ah, the dangers of Internet research on health matters--that's why you need a medical librarian, like me, I say modestly.]
I don’t know whether doctors got smarter in the past 20 years or they just have more evidence, but nowadays the numbers for women are lower. Perhaps that’s why so many health professionals who were trained long ago still hold to those old numbers. Let's face it, there are plenty of Web sites saying the same old thing as well. According to the Mayo Clinic’s up-to-date Web site, however, in a woman the top level for hematocrit is 44.5.
When my polycythemia* was discovered, my hematocrits were running 50-52. Fortunately, they haven’t been as high as that since. A draining or two does wonders. But everyone is different, and I find that when my hematocrit gets to around 44-45, I start to feel it. Again, I’m not necessarily aware of it as the culprit even then, since I’ve only had the condition for about a year and a half, and it’s sort of a low-key thing at this point, until it's not. Time will pass and it will creep up to 46, 47, 48, and by then I definitely know what it is. But if I'd catch it earlier, I wouldn't have to go through days of brain-numbing fatigue, dizziness, and headaches.
I am not alone in believing the hematocrit to be the critical number in the equation. Yes, high hemoglobin confirms polycythemia, but its number is not as sensitive in determining the way a patient feels. According to the MPN Education Foundation, the target level for hematocrit is 45 in men and 42 in women. My Hopkins hematologist verifies this, but my local one doesn’t seem to get it. One PV patient with a good doc writes, “I had the yearly consult with Spivak yesterday. As always, he reiterated the critical importance of low hematocrit: 42 for women” (http://www.polycythemia.org/treatment.htm). She's probably talking about Dr. Jerry Spivak, also at Hopkins, who is a polycythemia vera specialist and Director of the Center for Chronic Myeloproliferative Disorders.
So, as I said, I saw my local hematologist about a month ago, and my numbers were high—hematocrit 46 plus—but I said I’d wait for the phlebotomy. He smiled and said he thought that was best. You see, I think these people believe I’m having fun with this thing, somehow enjoying the idea of seeing a hematologist/oncologist and having my blood drawn on a regular basis, at numbers much lower than they learned were dangerous when they went to school. I know there are people out there like that; it’s a psychological condition called Munchausen Syndrome, though I’ve read more about it when these crazy people take out their medical obsessions on their own children, “by proxy.” More commonly, medical faking is known as “malingering.”
No, I definitely don’t have Munchausen, and I’m not malingering. I’d have no clue how to purposely increase my hematocrit, and I had my hepatitis C for twenty years before knowing about it—kind of hard to have invented it, in my view. And the only way a person can purposely increase his or her aldosteronism, which is what’s wrong with my adrenal glands, is to eat a ton of licorice, something I learned only after my diagnosis, and I have only this to say about that: Yuck. I don’t seek out medical care because I need attention. If I were healthy enough to never see a doctor again in my life, I’d be as happy as a clam.
But that just isn’t the case. In fact, what I’ve figured out today is that I wait too damned long to get help for this condition.
I have two specialists dealing with my disorder, and generally I’ve been happy with my local hematologist. He is a caring, good-natured person. When we first met, he asked me about some connection I’d made, and I said, “I’m a medical librarian.” He laughed, like he’d gotten a kick out of that, and said something to his nurse. Not at all derogatory, but sort of praising. But I am careful not to play the “medical librarian” card. I know doctors are sensitive to patients’ bringing in information they’ve found on the Web, so I don’t push things. On the other hand, I’m not going to be completely passive when dealing with a condition whose effects are all on me, not my doctors or nurses.
Shortly before my first phlebotomy, I corresponded with another polycythemia patient who told me she began to feel bad right about when her hematocrit is at 44. That has borne out for me, too. At a site for myeloproliferative diseases, I saw a graph that showed when most women in the world receive phlebotomies for polycythemia symptoms. And the number was between 42 and 44.
I am indeed a lucky person. If I must have these chronic diseases, at least I’m close to Johns Hopkins Medical Center, and my insurance allows me to go there. Now, this may sound like someone suffering from Munchausen, but I just want to mention that the sexiest Rock Star doctors are in epidemiology and hematology. I'm just sayin'.
First, there’s Dr. Roberto Salvatori , my Johns Hopkins endocrinologist, whose Italian accent is to die for. Then there’s Dr. Constantine Stratakis, my NIH clinical study director/endocrinologist, whose Greek accent is to die for. And now there’s Dr. Gabriel Ghiaur, my polycythemia vera specialist at Hopkins, whose Romanian accent is to die for. (Unfortunately, I couldn't finid a photo of Dr. Ghiaur, but let me tell you--he is the definition of tall, dark, and handsome. And SO nice, as they all are.) Dr. Ghiaur has told me I should get a phleb anytime the symptoms are bad and my hematocrit is 42 or above. At Hopkins, that is probably easy enough to do, but that’s three hours away.
Now, Dr. Z, my local doctor, might well have fallen into this Rock Star category a few years ago—but he, like me, is showing his years. He does have a lovely Iranian (I believe) accent, though.
So, when I told Dr. Z that I’d wait for my next phlebotomy, I was doing so mostly because I didn’t want to see the sort of sneery looks of the nurses I deal with through this process. And he seemed relieved, as if he, too, is worried I’m asking for too much when I want my thick blood removed at such “low” levels.
But now here it is, a month later, and I’m barely functional. I got up for about an hour today, tops, just enough time to email my boss, look through my emails, post something to the office calendar about working from home, and fall back into bed. Now, I won’t claim that time; I really hoped I would be able to work at home, but I still felt so sleepy that I couldn’t resist the bed, and I didn’t wake up until about 10 p.m. I mean, I was in that coma-like sleep all freakin’ day, after sleeping all night the night before. Sigh. And I’m still feeling headachy, stuffy, tired, and, well, full of SLUDGE three hours later as I write this.
I called Dr. Z’s office yesterday and told the nurse I was feeling bad and wondered if it might be time for a phleb. I was given a CBC order and had my blood tested yesterday. The rule is that the CBC has to confirm the high numbers within 48 hours of a phlebotomy. I didn’t wake until something like 3:30 in the afternoon today, so I knew I was probably screwed for the phlebotomy. It’s Thanksgiving weekend, and this is the Wednesday before Thanksgiving, and our local nurses are good family women, and I had no doubt the hospital was working with a skeleton crew already when I called to see whether I “qualified” yet for treatment.
The nurse told me my hemoglobin was 16-point-something, 8, I believe. This is where these folks should get an update about how to measure polycythemia symptoms. My hemoglobin rarely goes much higher than that. I asked her what the hematocrit was, and it was 48.6. This is the highest it’s been since it hit 52. No wonder I’ve felt like I’ve been moving under water for the past week or so.
I asked whether I could get a phlebotomy. She put me on hold and came back a while later, telling me my appointment was for Monday at 4:30 p.m.
Okay. So, I’m facing the Thanksgiving weekend with a high likelihood I’ll spend most of it in bed, even though you can’t tell me there isn’t some nurse somewhere in that facility who could stick a needle in my arm and drain out some blood. I wanted to make my homemade bread stuffing—my mom’s recipe, and always my family of origin’s favorite Thanksgiving dish, a tradition passed on to my sons, one of whom was looking forward to having it again this year. (The other is headed to the Ravens game.) Fortunately, my significant other is doing the major work tomorrow, though I’ll be called in at the last minute to do my gravy—a work of art, if I do say so myself. But having slept until 10 p.m., and still feeling thick and headachy after getting up, there was no way I was heading to the grocery store to pick up celery and bread, then spending the evening ripping the bread up so it can dry overnight. That’s how it has to be done, and I can’t do it.
But I just had a brilliant idea that solves everything, if only temporarily.
I’m going to pop a ton of aspirin, and that should thin it down, and I’ll worry about getting my blood drained after the move. Time to cancel an appointment! I realize I can’t take aspirin at high levels for long, as that is dangerous for the stomach, and I'm an h pylori (a nasty stomach infection) survivor, so I don’t want to invite those little spiral-headed bacteria back by breaking open the lining with too much aspirin.
BUT I do want to get a few things done this weekend and actually participate in Thanksgiving, so pop them I will.
I don’t think this is how polycythemia is supposed to be treated, and I don't recommend this to other polycythemia sufferers; in fact, I highly recommend against it. But for me, desperate times cause for desperate measures.
I look forward to the day when this condition is understood by the health professionals in this area so that I—and others--won’t go through this anymore and can just be treated with modern medical science, sans sneers.
____________________
For those interested, the paragraphs below from mpd.org go into the symptoms in more detail:
*N.B. July 2014 - My polycythemia, thus far, is of undetermined etiology. Because nearly all cases of polycythemia vera, or primary polycythemia, include a JAK2 gene mutation, and I don’t have it, the assumption is I do not have PV, a blood marrow disorder--though I was given that diagnosis by my local doctor; my Hopkins hematologists verified it's not PV but were not able to find the cause. They told me to have no more phlebotomies, as these might mask the actual cause. As of July 2014, I believe mine is caused by low oxygen in my tissues due to respiratory muscle weakness--a lot has happened after this early post, and I've chronicled much of it in The Mary Dell Show after this episode "aired."
You see, my blood is too thick. Too many red blood cells. That makes my blood turn to sludge, and sludgy blood is not good. Not only does it put me at higher risk of heart attack, stroke, and pulmonary embolism, it makes me feel as if I’m full of sludgy blood, which means every cell in my body feels heavy and slow and, well, sludgy.
You’d think that feeling would be easy to recognize. The thing is, it’s insidious. I start feeling bad and, because I’ve had fatigue problems for the past few years, I just accept it, even as it gets worse than usual. And then I finally realize, “Oh, yeah, I’ve got that thick blood thing, too … maybe it’s time to get drained.”
Getting drained, or, more formally, phlebotomy, is the treatment for polycythemia. But because I also have ADHD, I sometimes have a hard time anticipating what might be coming; I’m busy trying to keep my present from falling apart. I know I feel like crap, but I forget that it could be because it’s that time again. I've only had two phlebs thus far, and they were about six months apart. And I'm coming up on another six months. (Some polycythemia sufferers have them far more frequently than this.)
At my last visit to my hematologist about a month ago, my hematocrit was somewhere around 46. Okay, so here’s a little lesson in your body’s red blood cells. “Red blood cells perform the most important blood duty. A single drop of blood contains millions of red blood cells which are constantly traveling through your body delivering oxygen and removing waste. If they weren't, your body would slowly die” (The Franklin Institute).
And you know what happens when things get all gunked up and turn to sludge. They don’t move real well, so if anything’s waiting for them to roll along, such as your body’s tissues, good luck. Think oil in your engine or sewage in your pipes. You don’t want that stuff just sitting there.
A Complete Blood Count (CBC), a common lab test, can reveal whether or not one’s red blood cells are in balance. Two readings matter here—the hemoglobin (Hb) and hematocrit (Hct).
Now, it’s interesting that so many health professionals I’ve run into use the hemoglobin level, not the hematocrit, to determine whether or not a patient needs a phlebotomy.
You see, when the red blood cells are too thick, the treatment is as old as medicine itself: your blood is let. You know, what used to involve leeches. Fortunately, nowadays you just sit in a recliner and a nurse comes at you with a very large needle. (No lie—For my first phlebotomy, the nurse said, “I wouldn’t want anyone putting this huge needle in my arm.”) Over about ten minutes a huge jug o’ blood is filled, and that’s it. In my case, that blood is doubly tainted; too thick and infected with Hepatitis C. No chance even a vampire hospital would want that stuff, so into the biotoxins bucket it goes.
Gives one a warm and fuzzy feeling. Your life's blood, a biotoxin.
The fun part is that they bring you soda and crackers and a sandwich and candy, and I say, “Bring it on!” My diet is so bad nowadays that any food has to be welcomed by my body's cells.
Now, the number that I believe matters more in determining whether or not one is needing a phlebotomy is the hematocrit. “The hematocrit measures the volume of red blood cells compared to the total blood volume (red blood cells and plasma). The normal hematocrit for men is 40 to 54%; for women it is 36 to 48%.” This is what the Franklin Institute says, but the date on that info is 1990, and that info is wrong. [Ah, the dangers of Internet research on health matters--that's why you need a medical librarian, like me, I say modestly.]
I don’t know whether doctors got smarter in the past 20 years or they just have more evidence, but nowadays the numbers for women are lower. Perhaps that’s why so many health professionals who were trained long ago still hold to those old numbers. Let's face it, there are plenty of Web sites saying the same old thing as well. According to the Mayo Clinic’s up-to-date Web site, however, in a woman the top level for hematocrit is 44.5.
When my polycythemia* was discovered, my hematocrits were running 50-52. Fortunately, they haven’t been as high as that since. A draining or two does wonders. But everyone is different, and I find that when my hematocrit gets to around 44-45, I start to feel it. Again, I’m not necessarily aware of it as the culprit even then, since I’ve only had the condition for about a year and a half, and it’s sort of a low-key thing at this point, until it's not. Time will pass and it will creep up to 46, 47, 48, and by then I definitely know what it is. But if I'd catch it earlier, I wouldn't have to go through days of brain-numbing fatigue, dizziness, and headaches.
I am not alone in believing the hematocrit to be the critical number in the equation. Yes, high hemoglobin confirms polycythemia, but its number is not as sensitive in determining the way a patient feels. According to the MPN Education Foundation, the target level for hematocrit is 45 in men and 42 in women. My Hopkins hematologist verifies this, but my local one doesn’t seem to get it. One PV patient with a good doc writes, “I had the yearly consult with Spivak yesterday. As always, he reiterated the critical importance of low hematocrit: 42 for women” (http://www.polycythemia.org/treatment.htm). She's probably talking about Dr. Jerry Spivak, also at Hopkins, who is a polycythemia vera specialist and Director of the Center for Chronic Myeloproliferative Disorders.
So, as I said, I saw my local hematologist about a month ago, and my numbers were high—hematocrit 46 plus—but I said I’d wait for the phlebotomy. He smiled and said he thought that was best. You see, I think these people believe I’m having fun with this thing, somehow enjoying the idea of seeing a hematologist/oncologist and having my blood drawn on a regular basis, at numbers much lower than they learned were dangerous when they went to school. I know there are people out there like that; it’s a psychological condition called Munchausen Syndrome, though I’ve read more about it when these crazy people take out their medical obsessions on their own children, “by proxy.” More commonly, medical faking is known as “malingering.”
No, I definitely don’t have Munchausen, and I’m not malingering. I’d have no clue how to purposely increase my hematocrit, and I had my hepatitis C for twenty years before knowing about it—kind of hard to have invented it, in my view. And the only way a person can purposely increase his or her aldosteronism, which is what’s wrong with my adrenal glands, is to eat a ton of licorice, something I learned only after my diagnosis, and I have only this to say about that: Yuck. I don’t seek out medical care because I need attention. If I were healthy enough to never see a doctor again in my life, I’d be as happy as a clam.
But that just isn’t the case. In fact, what I’ve figured out today is that I wait too damned long to get help for this condition.
I have two specialists dealing with my disorder, and generally I’ve been happy with my local hematologist. He is a caring, good-natured person. When we first met, he asked me about some connection I’d made, and I said, “I’m a medical librarian.” He laughed, like he’d gotten a kick out of that, and said something to his nurse. Not at all derogatory, but sort of praising. But I am careful not to play the “medical librarian” card. I know doctors are sensitive to patients’ bringing in information they’ve found on the Web, so I don’t push things. On the other hand, I’m not going to be completely passive when dealing with a condition whose effects are all on me, not my doctors or nurses.
Shortly before my first phlebotomy, I corresponded with another polycythemia patient who told me she began to feel bad right about when her hematocrit is at 44. That has borne out for me, too. At a site for myeloproliferative diseases, I saw a graph that showed when most women in the world receive phlebotomies for polycythemia symptoms. And the number was between 42 and 44.
I am indeed a lucky person. If I must have these chronic diseases, at least I’m close to Johns Hopkins Medical Center, and my insurance allows me to go there. Now, this may sound like someone suffering from Munchausen, but I just want to mention that the sexiest Rock Star doctors are in epidemiology and hematology. I'm just sayin'.
 |
| Dr. Salvatori |
 |
| Dr. Stratakis |
Now, Dr. Z, my local doctor, might well have fallen into this Rock Star category a few years ago—but he, like me, is showing his years. He does have a lovely Iranian (I believe) accent, though.
So, when I told Dr. Z that I’d wait for my next phlebotomy, I was doing so mostly because I didn’t want to see the sort of sneery looks of the nurses I deal with through this process. And he seemed relieved, as if he, too, is worried I’m asking for too much when I want my thick blood removed at such “low” levels.
But now here it is, a month later, and I’m barely functional. I got up for about an hour today, tops, just enough time to email my boss, look through my emails, post something to the office calendar about working from home, and fall back into bed. Now, I won’t claim that time; I really hoped I would be able to work at home, but I still felt so sleepy that I couldn’t resist the bed, and I didn’t wake up until about 10 p.m. I mean, I was in that coma-like sleep all freakin’ day, after sleeping all night the night before. Sigh. And I’m still feeling headachy, stuffy, tired, and, well, full of SLUDGE three hours later as I write this.
I called Dr. Z’s office yesterday and told the nurse I was feeling bad and wondered if it might be time for a phleb. I was given a CBC order and had my blood tested yesterday. The rule is that the CBC has to confirm the high numbers within 48 hours of a phlebotomy. I didn’t wake until something like 3:30 in the afternoon today, so I knew I was probably screwed for the phlebotomy. It’s Thanksgiving weekend, and this is the Wednesday before Thanksgiving, and our local nurses are good family women, and I had no doubt the hospital was working with a skeleton crew already when I called to see whether I “qualified” yet for treatment.
The nurse told me my hemoglobin was 16-point-something, 8, I believe. This is where these folks should get an update about how to measure polycythemia symptoms. My hemoglobin rarely goes much higher than that. I asked her what the hematocrit was, and it was 48.6. This is the highest it’s been since it hit 52. No wonder I’ve felt like I’ve been moving under water for the past week or so.
I asked whether I could get a phlebotomy. She put me on hold and came back a while later, telling me my appointment was for Monday at 4:30 p.m.
Okay. So, I’m facing the Thanksgiving weekend with a high likelihood I’ll spend most of it in bed, even though you can’t tell me there isn’t some nurse somewhere in that facility who could stick a needle in my arm and drain out some blood. I wanted to make my homemade bread stuffing—my mom’s recipe, and always my family of origin’s favorite Thanksgiving dish, a tradition passed on to my sons, one of whom was looking forward to having it again this year. (The other is headed to the Ravens game.) Fortunately, my significant other is doing the major work tomorrow, though I’ll be called in at the last minute to do my gravy—a work of art, if I do say so myself. But having slept until 10 p.m., and still feeling thick and headachy after getting up, there was no way I was heading to the grocery store to pick up celery and bread, then spending the evening ripping the bread up so it can dry overnight. That’s how it has to be done, and I can’t do it.
But I just had a brilliant idea that solves everything, if only temporarily.
I’m going to pop a ton of aspirin, and that should thin it down, and I’ll worry about getting my blood drained after the move. Time to cancel an appointment! I realize I can’t take aspirin at high levels for long, as that is dangerous for the stomach, and I'm an h pylori (a nasty stomach infection) survivor, so I don’t want to invite those little spiral-headed bacteria back by breaking open the lining with too much aspirin.
BUT I do want to get a few things done this weekend and actually participate in Thanksgiving, so pop them I will.
I don’t think this is how polycythemia is supposed to be treated, and I don't recommend this to other polycythemia sufferers; in fact, I highly recommend against it. But for me, desperate times cause for desperate measures.
I look forward to the day when this condition is understood by the health professionals in this area so that I—and others--won’t go through this anymore and can just be treated with modern medical science, sans sneers.
____________________
For those interested, the paragraphs below from mpd.org go into the symptoms in more detail:
Symptoms caused by the elevated hematocrit are present initially in 30 to 50% of patients and may cause the patient to seek medical attention for symptoms such as plethora (too much blood, commonly felt as a feeling of fullness in the head), headache, dizziness, visual disturbances, severe itching (pruritus), particularly after a bath or shower, an inability to concentrate, and numbness (paresthesia). Related findings at diagnosis can include high blood pressure (hypertension), a high cardiac output state, and areas of little or no blood flow (vascular stasis). Significant arterial or venous thrombosis occurs in one third to one half of uncontrolled cases, and these events may precede the diagnosis. They include heart attack, stroke, pulmonary embolism, deep vein thrombosis, and portal vein clots (veins leading to liver), etc.
Thrombosis and hemorrhage are the major complications. Thrombosis may be arterial (coronary, cerebral, peripheral vascular) or venous (involving peripheral, hepatic or portal veins). Small vessel insufficiency produces cyanosis (slightly bluish, grayish or dark purple discoloration), erythromelalgia (pain in fingers and toes), or even gangrene of the digits. Mild hemorrhagic phenomena such as nosebleeds (epistaxis), bleeding gums and easy bruisability are common. More severe bleeding problems such as melena (black tarry stool), hemostasis (stagnation of blood due to lack of circulation), menorrhagia (excessive menstrual bleeding) or hemoptysis (coughing up blood which can originate from the mouth, larynx, trachea, bronchi or lungs) occurs in 10% of patients.
There are a number of other metabolic abnormalities which occur in MPN patients, including patients with PV.MPN patients may exhibit high uric acid levels (hyperuricemia, 50%) which can lead to joint pain and gout, low cholesterol levels (hypocholesterolemia), high histamine levels occur in two thirds of MPN patients which can produce itching (pruritus), heartburn, acid reflux/belching, peptic ulcer, painful small bowel action (hypermotility), flushing and allergic rashes. Hypermetabolism is commonly manifested as weakness and fatigue that occur in MPN patients not experiencing anemia. [Since polycythemia is the opposite of anemia, my weakness and fatigue make sense.] (http://www.mpdinfo.org/faq/faq_pv.html)
*N.B. July 2014 - My polycythemia, thus far, is of undetermined etiology. Because nearly all cases of polycythemia vera, or primary polycythemia, include a JAK2 gene mutation, and I don’t have it, the assumption is I do not have PV, a blood marrow disorder--though I was given that diagnosis by my local doctor; my Hopkins hematologists verified it's not PV but were not able to find the cause. They told me to have no more phlebotomies, as these might mask the actual cause. As of July 2014, I believe mine is caused by low oxygen in my tissues due to respiratory muscle weakness--a lot has happened after this early post, and I've chronicled much of it in The Mary Dell Show after this episode "aired."
Hey Mary I'm Rhonda I've had the pv since o5 . Do u get bone pain after u blood is drained because I've been doing that and having a lot of fatigue too. It's nice too actually talk too someone who has this crappy stuff to.
ReplyDeleteHi, Rhonda. I'm sorry to hear you are dealing with PV. In my case, doctors finally decided I don't have PV. My polycythemia is being caused by something else, but they haven't figured out what yet! There are at least two forums that include folks with PV. You might want to join so you can discuss your issues and problems and just get some moral support. The one I recommend is MPV Forum at http://mpnforum.com/.
ReplyDeleteI hope your PV is manageable, and I hope the bone pain goes away! Thanks for stopping in at my blog.