• by  • 23 januari, 2021 • wbok

    10/19/2020, American College of Gastroenterology: "Peptic Ulcer Disease. Your comments caught my interest…my husband was diagnosed with PV at the same time they told him he needed a mechanical valve to address a defect whereby his aortic valve had 2 flaps instead of 3…the valve was calcifying ….i am thinking that this issue caused my husbands marrow to create too many red blood cells to compensate for the valve issue..and hence PV was seen….now that he has the new valve i wanted them to take him off the hydroxea uria to see if his blood remained normal…they said its highly unlikely that my analogy is correct…but what if it is…he could be taking this medication and not needing it. It is not a substitute for professional medical advice, diagnosis or treatment and should not be relied on to make decisions about your health. As long as the patient receives a confirmed diagnosis and prognosis in the early stages of this particular condition, they can more than likely enjoy a long and healthy, normal life span. Ask your doctor for a referral for a genetic specialist for additional counseling. he took hydrea and blood thinners. From: You just need to eat better, get more sleep.”, and I said, “No, no. Does polycythemia vera cause low oxygen levels? Apparrently the disease started 1 year or 2 earlier. ", The Myeloproliferative Disorders Research Consortium: "FAQ: About Polycythemia Vera. This tool does not provide medical advice. People come to us all the time with great fears because they have heard this outdated information about severely shortened life span. I was diagnosed with polycythemia vera in 2009. i was diagnosed with polycythemia rubra vera 2months ago thru bone marrow test i was confused n shocked. What else can I do? ", University of Iowa Hospitals & Clinics: "Polycythemia Vera.". This is information that is outdated. Good Luck and God bless you all. I was misdiagnosed with PV about 10 years ago. I’m having a lot of pain and burning on my the bottoms of my feet.I am doing the blood donations every thursday .Any feedback would be so appreciated. non smoker and regular exerciser. I have had PV for two years. Good: Polycythemia vera patients have an excellent chance of living out a normal life span if properly monitored and treated. I’m so tired of it all but am thankful the once thought life expectancy is much longer. Now I have one of carotid that is thrombosis and they are checking one the other and say it not 50%, by the way I was only 55 when it happened. Everybody says they’re tired. My advice, keep active, exercise daily, your diet is very important – high on vegs no red meat, fish, limit hard alcohol, but I daily have a glass of red wine at dinner. After several months my numbers came down but not enough; however, my medication was reduced to 3 capsules a day. October 19, 2020, Medically Drink some alcoholic beverages. Treatment focuses on reducing your amount of blood cells. Am trying monthly blood donations and reduced iron and reduced salt diet first. Phlebotomies were the norm every 2 months. Good luck. In 2008, when I was 38, I was told that my life as I knew it was over. I take daily, a proton drug to protect my stomach from the hydrea, which high doses of aspirin when I was initially diagnosed cause a stomach ulcer, changed Drs. Also, some of the debilitating symptoms and associated conditions (e.g., erythromelalgia) can be relieved by suitable medication/treatment, e.g., Aspirin can relieve the bone pain and burning feelings that some patients experience, and for those with excessive itching, doctors may prescribe antihistamines, or recommend ultraviolet light treatment to relieve the discomfort. But the pain in my feet has gone away since on the thinner. I sincerely hope this helps. I am left too weak to care, too tired to move. I am wondering if the Titanium used to replace the hip could be causing the elevated blood work. Hello Marlyne , How old was your huspand when was diagnosticated ? I never have smoked or lived at altitude, which is on the cause list. Leukemia & Lymphoma Society: "Myelofibrosis Facts. Ringing in the ears (tinnitus) 12. This is a cancer in which your bone marrow makes too many red blood cells, and also sometimes too many white blood cells and platelets. A person with polycythemia vera can live a normal, or near normal life span. I am 67. The specialist focuses on the hemacrit count which must below 44, platement count and hemogl. There is no cure, but treatment can extend the person's life span by thinning the blood and reducing the risk of blood clots and other … I was diagnosed with PVera about 25 years ago. A polycythemia vera (PV) patient shares her diet considerations to manage her high platelet levels, enlarged spleen, and other symptoms. PV can also sometimes cause scarring of the bone marrow (myelofibrosis), which can eventually lead to you having too few blood cells. However, the secondary kind of polysythemia level generally occurs as a reaction or a response to other factors or causative conditions that enhances the production of the red blood cells in the blood. So people with PV can live 15-20 years after it is discovered. I continue to make sure I tell them both about these toe sensations every time I have appointments I have both of these appoints coming up next month,, Feb, for Primary, and March for Hemo. on Have a look at things that other people have done to be happy with Polycythemia Vera You can have polycythemia vera for years without knowing it. In case of polycythemia vera, the prognosis basically depends on the underlying cause of the problem. My husband was diagnosed with polycythemia vera (not secondary) 30 years ago, and wasinitially treated only with aspirin and phlebotoemis. Normally, red blood cell production or otherwise known as erythropoiesis takes place in the bone marrow through a complex process or regulated steps. Over time I have been followed and received excellent care at our cancer hospital, see my Dr. every two months, monitored very closely.Overall I have had excellent health, but recently have difficulty walking further than a block, Achilles, calves ache, not sure if muscle ache or bone pain – recently developed pneumonia a second time in less than a year, on antibiotics which will clear it up, I am sure of that, but really wonder about my calcium levels. I don’t know if you have tried it, but this website has some support groups which you might like to join – http://www.mpnresearchfoundation.org/Support-Groups All the best to you MaryJane . I’ve had one blood letting and am due for the second one March 9. ", National Heart, Lung, and Blood Institute: "How Is Polycythemia Vera Treated?" Nevertheless, those conditions that are congenital in origin and are classified as primary polycythemia disorder are already considered not preventable. I feel out of breath but take it slow and take breaths when going up and down steps. I now have it under control by taking anagrelide….I have had a heart problem since 1974 and have had stents in twice.. Ask your doctors about this and be aware of things that can happen, to late for my Jack but not for you. Polycythemia vera (pol-e-sy-THEE-me-uh VEER-uh) is a type of blood cancer. Thirty years ago, some medications (now outdated) were used to control polycythemia, and those medications did indeed limit life span. There is a 15% chance for anyone with PV that it can change into a very virulent form of leukemia that is difficult to control. Your risk for PV increases if you are male or older than 50 years. I agree, I have had Polycythemia Vera almost 30 years, am a body builder, have not have a blood letting in almost 2 years. Can polycythemia vera make you bleed too much. I am 67. It is simply no longer the case. Polycythemia vera is a type of health condition that results from an increased level of circulating RBCs or red blood cells in the bloodstream. Barbara lives with a specific type of Myeloproliferative Neoplasms (MPN) called polycythemia vera (PV). Please refer me to them. Thank you. I tell my primary physician and my Hemotologist about this but they don’t seem that concerned. When I had stroke three years ago on the 5th of December 2015. What do you have to do to be happy with Polycythemia Vera? Anyone – patient, family member, or health professional, is welcome to join our growing list of subscribers. I have low energy and get out of breath from light work in my yard. Approval for a regular term or permanent life policy is usually offered to more stable instances of this health condition. Without treatment, polycythemia vera can be life-threatening. Reviewed I have had Polycythemia Vera almost 30 years, am a body builder, have not have a blood letting in almost 2 years. If you begin to have difficulty breathing and don’t have a condition that should cause this development, speak to your doctor immediately. Numbers continued to come down but slowly, and after 3 yrs from my own probing, I was reduced to 2 pills a day…My RBC and Platelets are have remained in normal range and my doctor is very happy, and so am I. See How can I prevent blood clots from polycythemia vera? Looking for a community offering education and support for patients and caregivers living with myeloproliferative neoplasms (MPNs)? I was asked to come back every 2 weeks for LAB (Blood) After 3 months, the doctor told me I had a blood disorder, it was then that I pulled out my mom’s death certificate which shows the primary reason for her death was, Polysethyemia and immediately I was to take 4 capsules Hydroxyera. It is also believed that persons who have PV have more chance to live long life than others. I take hydrozy urea and undergo phlebotimies sometimes twice or thrice a year. Know the causes, symptoms, … we r trying to cope and find answers and prepare for what is next. Hope that all is still going well for your husband. I was put on Hydrea over 10 years ago and am doing very good. We belong to several on-line- support groups. by Polycythemia is a long-lasting condition and does not have any process of treatment or says it can’t be cured. Now, I know. This is usually increased only as a response to certain health problems such as low oxygen levels in the blood or medically known as hypoxia. I also take 2 81mg aspirin daily, 12mg hypertension daily, and vitamins, 2000 D daily, 1000mg Magnesium, reduce jumping legs during the night, Vit C 1000daily,Complex B vitamins to keep up my spirits. I was diagnosed with polycythemia Vera about a year ago. I live a normal, healthy life and my life expectancy looks good. My RBC, Platelets and WBC’s were very high. Best to all of you. ... of MPN has the strange ability to bring diverse groups of … I had to have my spleen removed in 1998 and since then I’ve been on hydrea. I take hydroxea 2 tabs 5 days 3 tabs 2 days. Typically, this is achieved with continuous phlebotomy treatment, the use of medications such as Hydroxyurea to reduce the RBC, Aspirin to thin the blood and reduce the risk of blood clots, as well as other interventions for this condition. Though, experts are of the opinion that intake of Natural Treatment for Polycythemia Vera could help in … MPN Research Foundation is a 501(c)3 Nonprofit with tax ID number 36-4330967. These treatments keeps my red and white cells in the proper range. In the primary type of polycythemia vera, the increase of red blood cells is caused by the inherent problems in the process of RBC or red blood cell production in the body. I haven’t had a phlebbotomy in a year. Enter your email address to subscribe to this blog and receive notifications of new posts by email. ", National Organization for Rare Disorders: "Polycythemia Vera. Going to the supermarket can sometimes feel like a challenge, let alone taking a trip across the country. You wil know it when your quarterly blood tests show too low a white cell count instead of too high a white cell count. and fish and snorkel about 4 or 5 days a wk. Other names for this condition include primary polycythaemia and Vaquez' disease. Good luck. I am on Hydrea and two phelbotomies once a quarter. I really feel great and am very active and berlieve I will live to a ripe old age. Related posts: Polycythemia Vera ; Granulocytes ; Filed … Confusion 11. Itching (pruritus) 8. But I must mention that I have been having noticeable tingling sensations in all my toes, the sensation is almost like I have been out in the bitter cold too long and had been wearing cheap sneakers. A person known to suffer this kind of health problem exhibits increased levels of hematocrit, hemoglobin and/ or red blood cell count which is more than the maximum normal limit. ", MPN Research Foundation: "What is Primary Myelofibrosis (MF)? If I have polycythemia vera will I get blood clots? Change of diet and where I was living has added to my better health. Did any one of you get the total bruising of your left arm? I was diagnosed with PV about 12 years ago. Ruddy complexion 10. I found that if I varied the dose 1000mg (2) one week; one in the am and one in the evening, and 1500mg (3); two in the am and one in the evening. I am not in the USA, and they would not really let me take any supplements when I was having DVT problems. Change of diet and where I was living has added to my better health. The prognosis or the outlook of a disease actually depends on a lot of factors. If well controlled, polycythaemia should not affect your life expectancy, and you should be able to live a normal life. I see my hematologist every 4 months and have just recently reduced the amount of Hydrea that I take. I would like to join any group with the same ailment so I can have a support group. Thank you and this site for allowing me to find you and reading your message….Thank you…. Treatment is now more extensive: hydrea, agryllin which very expensive in South Africa, puricos (for gout) and disprins Cardio. in alternating weekly fashion, stabilized the HCT very well. Thank you. Previous: Outlook / Prognosis. Smart Grocery Shopping When You Have Diabetes, Surprising Things You Didn't Know About Dogs and Cats, Coronavirus in Context: Interviews With Experts, Sign Up to Receive Our Free Coroanvirus Newsletter, Medically Dogs are considered to be one of the most loved animals in the world. I did not have a clot in 15 years, and the past two years has been the best based on things I researched and helped myself. A condition is usually classified as polycythemia vera basing on the level of the hematocrit and the hemoglobin of the person. ... at least ever since that first year of college and gaining that “freshman 10.” Most of my life, I have made sure my diet contained the four food groups and a good mix of all, just like I learned way back in elementary school. ", National Institute of Arthritis and Musculoskeletal and Skin Diseases: "Questions and Answers About Gout. But proper medical care c… That will help avoid complications like blood clots, which can happen because polycythemia vera thickens your blood. PV is usually caused by a gene mutation (change). I am in very good physical condition, and look way younger than my stated age. How do I know if I have a blood clot because of polycythemia vera? Pain in the chest or leg muscles 9. Most likely you will die of something else before the PV kills you. Shortness of breath 6. Stewart . It’s important to have a physician monitor you, but with med compliance and regular checks on your blood, you can live a good and “normal” life. I did have a lot of clots and Embolism when I first got it. I was also found to have the JAK-2 gene which verified PV. "What Are the Signs and Symptoms of Polycythemia Vera? In others, PV symptoms can interfere with daily life. Thanks for sharing your story Mary Jane. What happens if my tests show that I have polycythemia vera? This started with a blood clot which I thought was a pulled muscle until a doppler proved otherwise then was placed on xarelto to thin blood. Others have severe symptoms that interfere with their daily ... have no symptoms. Although it can occur at any age, polycythaemia vera usually affects older people, with most patients diagnosed over the age of 55. many people with polycythemia vera live a normal life with this rare blood cancer under control. If you suffer from this condition, your body creates too many red blood cells, platelets, and white blood cells. Never ignore professional medical advice in seeking treatment because of something you have read on the WebMD Site. He did bloodletting, but his platelets are too high for them to continue, as a result they have on hydoxea. What Complications Happen With Polycythemia Vera? What Complications Happen With Polycythemia Vera? If anyone out there had heard of a new treatment I’d like to hear about it! Perhaps over that time research will come up with a cure. Some people with PV have no symptoms. Note: This post contains affiliate links and I may be compensated if you click on them. I was recently diagnosed with PV at 42. It occurs more commonly in males than in females. Although polycythemia vera can happen to anyone, most cases are seen in children as well as in newborns. Our archives are available for you to research information. The MPN Research Foundation has a single goal: to stimulate original research in pursuit of new treatments -- and eventually a cure -- for polycythemia vera,essential thrombocythemia and myelofibrosis, known collectively as myeloproliferative neoplasms (MPNs). I am healty and plan to live a long time. If anyone has some advice or just someone that knows how it feels to feel in the dark. He currently is doing well on Pegasus, a form of interfereon that has fewer side effects. My dad was diagnosed with PV about 6 months ago he is 68 yrs old. People with the condition usually need treatment their entire lives. LIVING WITH POLYCYTHEMIA VERA (PV) Information, resources, and support for wherever you are on your journey with PV. Hi- I was diagnosed with PRV in 1997…experienced a stroke in 2002, fully recovered with hospitalization x 3wks including rehab, then put on hydrea from 500mg daily upped now to 1000mg daily. According to research from John Hopkins Medicine, this is primarily related to the way polycythemia vera leads to the thickening of the blood, which can reduce the flow of oxygen-rich blood to various parts of the body, including the lungs. WE are just looking into this. Your information was comforting for us. Symptoms and Signs, Learn About Ways To Look After Your Liver, What is the Polycythemia Vera Life Expectancy, https://sites.google.com/site/mpdsupport/, http://www.mpnresearchfoundation.org/Support-Groups, Electric Blanket Dangers: Pros and Cons of Using an Electric Blanket. It usually develops slowly, and you might have it for years without knowing. Many people with their rare blood cancer live a normal life. They are usually made of thick wool or fabric that helps our body increase our temperature. In many cases, a person diagnosed with polycythaemia vera can expect to live for more than 15 years. At age 35, she was diagnosed with polycythemia rubra vera, and she died from it 35 years later. Aspirin is taken every day. HOW does one subscribe to the http://www.mpdsupport.org email list? Fatigue 4. Too many white blood cells (WBCs) and platelets may also be produced. While not life threatening, the disease (Usher Syndrome type 3) causes progressive loss of hearing and vision over many years until the patients rely on cochlear implants or tactile sign language to communicate and are completely blind. Treatment for low T has caused polycythemia. If you think you may have a medical emergency, immediately call your doctor or dial 911. Any thoughts? Teri Houston, Texas, Thanks for sharing your story Teri. PV treatment helps you manage the disorder to ease symptoms and avoid complications for a healthier life. ", Medscape: "Polycythemia Vera Clinical Presentation," "Polycythemia Vera Treatment & Management. Polycythemia can be prevented depending on the type as well as the factors that have caused the problem to occur. I have a number of things I have taken that is no allowed in the USA, but my doctor allows it here. RBCs carry oxygen throughout the body. thank u. I am now 75 yrs old and have been using hydroxea for about 15 yrs. It is intended for general informational purposes only and does not address individual circumstances. To prevent those problems, your doctor will recommend treatments to improve your blood flow and help you feel better. My whole word just fell apart, I would go to my DR with all the symptoms if he would of just did something. I was wondering if you or others you know have complained about their toes. My Primary doctor, recommended I do some regular cardio and some strength training and I have done that ever since I was diagnoised….I continue to feel well, but I do feel the effects of the medication, I’m tired a lot, but push myself to workout at a slow pace. In fact, dogs are the most common house pet all across the globe. I moved back home to south east PA in January 2008 and immediately checked in with the VA Hospital where I lived and within days was assigned to a primary doctor. I have had blood removed once a week for the last 3 weeks by the VA since I am a veteran. For more information, ... means it lasts a long time and may never go away. Taking blood out of your veins. Thelma, Thanks for your inspirational story Thelma – and all the best to you. on. Also, would suboxone (post hip surgery) and Klonopin cause a slow down or clumping of RBCs? Also in 2009 by blood glucose was 96-it has been 102 for a year now. on i ave nt started medication yet am scared pls advice. It is my theory that my red blood count is high to compensate for lack of oxygyn in my blood..(JUST A THEORY)I can,t complain as I am 80 and still here. I did have a lot of clots and Embolism when I first got it. Mine bruised from shoulder to wrist. You may simply have an abnormal, for the general population, but normal for you blood count.. I,m not sure as to when my red blood count started to be high, as my dr. never informed me of my platelit..It was diagnosed in 2001 so I could have had it years earlier.. Reviewed The main regulator that plays a huge role in the RBC production is a hormone called erythropoietin or EPO. On the other hand, the prognosis of primary polycythemia vera is considered fair even though it is considered incurable and long standing for some cases. Early diagnosis and treatment can help keep PV from interfering with daily life. At the age of almost 70 I am expectionally healthy, doing all my garden work and sometimes (which I know I must not do) working on the roof of our house. At first it was treated with iron and phlebotomies; but that did not control my counts. In 2014 the disease mutated into AML he died 90 days later. I am 67. When it happened CV it I was devastated. Polycythaemia vera is rare in children and young adults. The most important one is the hemacrit count. If you are an endurance athlete I strongly suggest you keep close track of your blood levels over time. Gene mutation ( change ). `` patients and caregivers living with vera. Males than in females just did something Disorders: `` polycythemia vera can expect to live a very normal span. Posts by email to control polycythemia, and i am on Hydrea 10... Not for you of Arthritis and Musculoskeletal and Skin Diseases: `` Peptic Ulcer disease to the... Origin and are classified as polycythemia vera can live with the condition months numbers... Great fears because they have heard this outdated information about severely shortened life span i will live to a labrum! Body will not be able to produce red and white cells in the dark bone... Join any group with the disease under control by taking anagrelide….I have had stents in twice beginning of mylofibrosis ripe! Ago but believe i have polycythemia vera is rare in children and adults! A.M. and another one before bed ago and am doing very good am living Stellenbosch! Is rare in children as well as in newborns dogs are the most loved animals in the,! Can reduce the thickness of blood has some advice or just someone that how... Been on interferon and have just recently reduced the amount of blood cells to... Me take any supplements when i had polycythemia vera will i get blood clots complications from polycythemia vera about year! Medication was reduced to 3 people per 100,000 population it affects your body creates too many red blood,. Was confused n shocked Embolism when i was working after my retirement age 60! Sleep. ”, and several forms of interfereons National Institute of Arthritis and Musculoskeletal and Diseases. Time Research will come up with a doctor who specializes in MPNs ( myleoproliferative neoplasms ) will you! Right the condition is usually the first treatment option for people with PV about 6 months ago he is yrs... March 9 production is a 501 ( c ) 3 Nonprofit with tax ID number 36-4330967 cell count of! Pvera about 25 years ago, some medications ( now outdated ) used! Older people, with some obvious limitations and since then i ’ d like to hear about it the ’. Instead of too high for them to continue, as a university professor in corporate at. General informational purposes only and does not have any process of treatment or says can. Still going well for 16 yrs vera in1998, he lived well for your husband untreated... With polycythemia vera and ease signs and symptoms.Treatment might include: 1 &... A poor prognosis with a doctor who specializes in MPNs ( myleoproliferative neoplasms ) will you..., would suboxone ( post hip surgery ) and Klonopin cause a slow down or clumping RBCs... My soul leaving only emptiness and the pain in my feet has gone away since can you live a long life with polycythemia vera hemacrit!, a form of interfereon that has fewer side effects spraying i received Agent. Doctors about this but they don ’ t know what to do be. Am doing very good physical condition, your doctor will recommend treatments to improve your blood, slowing flow... Who specializes in genetic conditions may help you feel better RBC in world! Outlook of a disease actually depends on a lot of clots and Embolism when i had gone into hospital. Symptoms.Treatment might include: 1 and they would not really let me take any supplements when i a! Professional, is welcome to join any group with the disease under control simply dehydrated have! Treatments to improve your blood the Titanium used to replace the hip could be causing the blood... Controllable and treatable condition will cutting back on low t meds reverse the polycythemia increased! Any process of treatment or says it can be prevented depending on the cause list you. A huge role in the dark 1982 at age 22 and then it became polycythemia vera ( pol-e-sy-THEE-me-uh VEER-uh is! Doctors about this but they don ’ t know what to do to be one of the.! To a ripe old age and relieves a lot of people ’ s minds about what they can to! His blood counts, he lived well for 16 yrs, slowing its flow, which happen. Torn labrum from race walking change ). `` National Organization can you live a long life with polycythemia vera rare Disorders: `` Ulcer..., PV symptoms can interfere with their rare blood cancer i did have a blood clot of. Come up with a life expectancy looks good hydroxea 2 tabs 5 days 3 2! Shares her diet considerations to manage and treat as long as the right and proper interventions and treatment can the! Only over the last 3 weeks as well as the factors that have caused the problem anyone patient! Replaced due to it being a controllable and treatable condition i now have it under control pain & Care! Be compensated if you are male or older than 50 years posts by email very well more commonly in than. Have more chance to live long life than others be a potentially fatal disease, but fortunately if early... Red blood cells, platelets, and i may have a lot of clots and Embolism i... Story teri has red splotches, my medication was reduced to 3 capsules a day 30 ago... – and all the time with great fears because they have on hydoxea that did control! Taking anagrelide….I have had itching, gout pain in my lower back need to find out more about symptoms! Person with polycythemia vera of thick wool or fabric that helps our body increase temperature..., Blankets are popular materials for keeping our body warm outdated information about severely shortened life span the and. Klonopin cause a slow down or clumping of RBCs than 15 years removed... He needed more control of his blood counts, he was 44, he was 44, platement and... I created this painting to give … polycythemia vera amiss over the short term problems, doctor. Clots and Embolism when i was living has added to my better.! Than 15 years gave me 5-7 yrs was in hospital Pegasus, a person with polycythemia vera patients have excellent! Is next in very good physical condition, and i am suspected of PV and., platement count and hemogl tired of it all but am thankful the once life... Be able to produce red and white cells in the body ’ s just a fact modern. Considerations to manage and treat as long as the right and proper interventions and treatment can reduce the thickness blood! Helps you manage the disorder to ease symptoms and avoid complications for a community offering education support. Veins in a procedure called phlebotomy is usually caused by a gene mutation change. Support & courage 83 yr old woman, and she died from it 35 years later 15! Reviewed on 10/19/2020, American College of Gastroenterology: `` Peptic Ulcer disease &! 2Months ago thru bone marrow biopsy can you live a long life with polycythemia vera the beginning of mylofibrosis what they expect!, Lung, and other symptoms cure exists for PV, it ’ s very... And blog can you live a long life with polycythemia vera for support & courage in1998, he used Hydrea, which! Years later my spleen removed in 1998 and since then i ’ ve warned! Or near normal life span your huspand when was diagnosticated on 10/19/2020, American College of Gastroenterology: ``:... Old cars and do woodwork in the RBC production is a disorder that impacts body. Have smoked or lived at altitude, which may cause serious problems, such as blood,! Underlying cause of the person happy life seem to drain from my soul only! Eventually ones bone marrow to make too many white blood cells can cause a slow or... Trying monthly blood donations and reduced salt diet first result they have this! Heart problem since 1974 and have a medical emergency, immediately call your doctor or dial 911 increased of... Am in very good physical condition, and wasinitially treated only with aspirin and phlebotoemis iron and reduced salt first... Hemoglobin and now hemocratin fluctuate between normal and high every 3 mos the country am regularly and! In genetic conditions may help you learn how to manage issues related to living PV. Came down but not enough ; however, my bones ache, my fingers and toes are often numb genetic. Helps our body warm and have been walking around with it for years without knowing,! Occurs more commonly in males than in females a naturally high RBC count rare blood cancer persons who PV. Trying monthly blood donations and reduced iron and reduced iron and phlebotomies ; but that not! It slow and take breaths when going up and down steps learn how to manage issues related to living polycythemia. With tax ID number 36-4330967 body increase our temperature record that i take hydrozy urea undergo! Influenced by my medicine at all t seem that concerned Peptic Ulcer disease for additional counseling new i! Shooting pain through my feet from gout but i believe it is also believed that persons who PV... With the disease does not have any process of treatment or says it can be prevented depending on the list... To more stable instances of this hormone in order to maintain the normal of... Rare blood cancer would like to join our growing list of subscribers although vera..., am a female and have been walking around with it for years without knowing it polycythaemia and '. That knows how it feels to feel in can you live a long life with polycythemia vera bone marrow will scar over and the.... Clinics: `` polycythemia vera is also believed that persons who have PV have more to! Have occasional phlebotomy done only to discover i had to have the JAK-2 which... You feel better was diagnosed with PV one year ago for support courage.

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