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Polycythemia Vera/ Hemoglobin Cowtown - Rare as a Unicorn?
I feel like an island. Doctors refer to me as a unicorn because I’m so rare. I shouldn’t really exist at all! I am a woman, age 47 and I’ve been dealing with us since 2011. From what I understand, the only known case or cases on record, and there’s only two, they’re both men over the age 60. No one knows anything about hemoglobin Cowtown not even the people who discovered it in Fort Worth Texas hence the name Cowtown. I want to find one person Who knows anything about this genetic mutation that I guess causes polycythemia, that’s their approach to managing this… “treat it like polycythemia because we don’t know what else to do”, they say. I keep going to the hematologist / oncologists, thinking that they can do some thing to treat the actual genetic mutation and they can’t. They don’t know how! they just keep treating me with phlebotomy after phlebotomy after phlebotomy, I’m hopes I don’t have another stroke! After exploiting my vascular system with more blood draws than I can count I finally have a port in my chest that they take the blood from. same place You would put chemo medication and it’s made a huge difference. But now, my Lymph % on my CBC has been sky high for the past five months. Like 29.2, 30.9, 27.7… pretty high considering the threshold for normal range is 11-15 And no one is acting like it’s any kind of a big deal. I mean really????? I just need someone with letters behind their name to know a thing or two about a thing or two regarding this Cowtown business and now the super high Lymph%
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Hi @lostinaustin You definitely are a unicorn in your uniqueness with this mutation! I read your bio to see you’ve basically been all over the world in hopes of finding a cure or at least someone who understands this Cowtown mutation…it does appear that you are one of 3 in the world…the other two cases discovered back in 1979. I can’t even imagine how isolated you feel with not having anyone who personally understands what you’re going through.
You’ve been to so many specialists for second/third/fourth opinions, but I have to ask…have you by any chance contacted Mayo Clinic? I’m putting in a link for their homepage. You’ll see numbers for each of their 3 campuses where you can request an appointment. It starts with a phone call…
http://mayocl.in/1mtmR63
I know you’re tired of being poked for blood draws and thankfully you now have a port which makes that easier. Do you have symptoms? With all the phlebotomies are you fatigued?
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6 ReactionsThank you so much for your response and for the link you provided. Me being in Alabama, I would love to see someone in Florida at that location, for logistical inconvenience sake. Of all the doctors and specialists I’ve seen, which have been many, it is here in Alabama, that I feel I have received the most inadequate care. I chalk that up to me being so rural and they’re being so many patients and so few oncologist/ hematologist. If you research what Monsanto with their 40 year presence in the area has done to the water supply and these communities, there is a huge population of very sick people and the need for more oncologists and hematologists is in absolute desperate need. Please hear me, I do not want to be disparaging to my doctor. he’s just one man doing the best he can in a community of very sick people and the patient to doctor ratio is not in anyone’s favor seeking to offer or receive in depth quality care.
All that to say… I will be making the call today and again, thank you.
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6 ReactionsHemoglobin Cowtown (beta 146 HC3 His-Leu): a mutant with high oxygen affinity and erythrocytosis Father/ son and you must be related to them some how; prayers lostinaustin @lostinaustin, Hope you find answers and good doctors; Mayo clinic in Florida won't take my insurance and I only live few hours away and can't go. Most doctors don't understand the 9 rare diagnosis (A good doctor is as rare as the disease) Most doctors want to brush off the rare and weird disease and only want common cold, flue and illness. There are few who try to understand and listen (they are rare like you!) My heart goes out to you!
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2 Reactions@lostinaustin
Hi I am a man 40 years old from the UK I also have thos condition and would love to know what symptoms you deal with ??
I also started on venesections but now I am having full redcell exchange every 6 weeks this seems to help
They exchange 14 units of red cells every 6 weeks
I like you want to know more about this condition because as was diagnosed 10 years ago but apparently I was born with this defect red cells
I would like very much discuss this with you as cannot find any chat rooms or forms about this condition
Wish you all the best and well being
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3 ReactionsThe father son is my uncle and cousin. There were 11 children in this family and 3 of the child have is, including my mom, myself and I am thinking one of my daughter's. I do nothing for mine, they do phlebotomy after phlebotomy on my mom except for the past two yrs. She had to be put on blood thinners and she has not had one since, levels have not been high, so we are all watching to see if this keeps working. All I do is not take anything with iron, have always been told no iron.
@jillhall
High iron levels are most often associated with a genetic disorder called hereditary hemochromatosis.
However, there can be other causes.
I had been anemic my entire life, until I moved six years ago.
After relocating, I experienced a sudden and unexplained increase in ferritin levels. This prompted me to have the water tested, and it turned out to have high iron content.
Hi. I empathize. I've been dealing with PCV also since 2011. Its not unusual for there to be many causes. For me, it was benzene exposure as a boy/young man working summer jobs. I was also found to have kidney cancer at the same time, also a result of benzene. There really aren't that many ways to treat PCV. It depends on how it manifests. For me it was Budd Chiari (massive liver blood clotting).so treatment was aggressive with interferon.and blood thinners. You're going to get abnormal CBC results due to meds. I've had that for years. The story gets worse because the interferon caused a devastating autoimmune disease. Anyway, Im also a unicorn. Happy to talk.more if you like. At Mayo for the next week in Rochester. Best of luck.
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