One of my twins sons who are 18 went to college on a cheerleading scholarship and was diagnosed with polycythemia not with the Vera part only the polycythemia. H he had a rare occurrence and all the doctors he sees cannot understand why his heart is being affected with this in the way it is they refused to put him on blood thinners I come from a family of doctors and none of my family understands why they won't thin his blood...even with baby aspirin instead doing the blood letting his red blood cells are not getting enough oxygen and his blood is overly producing red blood cells and that is his main diagnosis his glucose level was affected as is his blood pressure due to the type and the hyperviscosity syndrome which makes his blood thick like syrup causing his heart issues they still cannot figure out if an organ is damaged or diseased. They keep checking his kidneys which are fine! the biggest problem is the oxygen in the red blood cells is really low so anybody know anyone with the polycythemia without the Vera? Please give me information if you do he's leaving College where he rooms with his twin brother coming back to Bartlesville Oklahoma after this semester ends, so he can go to Rodger State University from home. I'm moving back to Oklahoma as soon as possible before he gets there so I can keep a better eye and help him get to his appointments he's having trouble remembering and focusing and class and is forgetting things which is part of the problem with their lack of oxygen in red blood cells. He's now 18 anybody that has other information on Polycythemia that requires bloodletting every couple weeks of a little over a pint and a half and then after 2 months they redo it again in four or five months but he has an oncology phlebotomy histology and many other doctors I haven't mentioned he sees each Dr. every month.
I hope to hear from somebody soon about all my questions God bless you all your all in my prayers
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DadwPVSon18
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The terminology around polycythaemia is complicated. Polycythaemia vera (or true polycythaemia) a disease caused by a mutation that causes the production of red blood cells.
If your son does not have polycythaemia vera he probably has secondary polycythaemia. Secondary polycythaemia is not a disease in itself but is a symptom of some other condition.
I assume that smoking or vaping is not an issue but how much fluid is your son drinking? Teenage boys are not good at the basics. Dehydration can cause red blood cell counts to increase and make blood very thick. Having venesections makes it even more important to keep well hydrated.
Ask the doctors what they think is happening with your son . Get them to explain why they think he does not have polycythaemia vera and find out what further investigations they are going to do to get a more definitive diagnosis.
The outlook for polycythaemia largely depends on the underlying cause.
Many cases are mild and may not lead to any further complications. However, some cases – particularly cases of PV – can be more serious and require long-term treatment.
If well controlled, polycythaemia should not affect your life expectancy, and you should be able to live a normal life. However, people with PV can have a slightly lower life expectancy than normal due to the increased risk of problems, such as heart attacks and strokes.
PV can also sometimes cause scarring of the bone marrow (myelofibrosis), which can eventually lead to you having too few blood cells. In some rare cases, it can develop into a type of cancer called acute myeloid leukaemia (AML).
Hi, sorry to hear about your son. It is a very worrying time for you all but if it is polycythaemia he has, then with the appropriate blood tests and venesections when necessary, he should be able to lead a relatively normal life once he feels he has more control of his condition.
Control comes with knowledge and Maz has given you a good link to information. Also you and your write down your questions for the medics and insist on answers which will then increase your understanding and reduce your anxiety. If you are not happy with the answers, ask for a second opinion or more until you are satisfied.
I have Polycythemia without the vera now but was originally diagnosed with PV. I am much older than your son and do find symptoms hard to deal with sometimes. My current treatment is blood tests, followed by venesection when needed with no blood thinners at the moment.
Please keep posting and both you and your son will get support for your worries. We are all individuals with different medical issues and medications so it’s not a “one size fits all approach,” but tell your son to keep hydrated, eat as healthy as possible and exercise as much as he is able to. Above all, get the answers to your questions and that will help greatly.
It sounds like consultation with a MPN Specialist is in order of you have not already consulted one. many docs, even hematologists, rarely deal with MPNs and may not have the KSAs your son needs. Here is a link to patient-recommended docs with MPN expertise. mpnforum.com/list-hem/ . I did not see any listed in OK, but there are some excellent docs in Texas with the needed expertise. The MD Anderson clinic is well known for its MPN expertise. It is worth travelling if you need to for expert consultation.
Did the docs check for the MPN-related mutations (JAK2, CALR, MPL)? As others have already suggested, this may be a secondary polycythemia. It may also be a MPN that does not fit neatly into one of the typical categories. It sounds like your son is having significant issues. He is fortunate to have you available for support. Most 18 year olds are not able to adequately advocate for themselves in dealing with a complex medical situation and systems of care.
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