can you live a long life with polycythemia vera

Thank you. I have had itching, gout pain in my ankles, and shooting pain through my feet. I give blood when HCT s over 46, about every 3 mos. The over-production of red blood cells can cause a variety of symptoms, including some which are life-threatening. Perhaps over that time research will come up with a cure. This is information that is outdated. If left untreated, polycythemia vera can affect the heart. 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. Thanks for sharing your story Mary Jane. But the pain in my feet has gone away since on the thinner. Consulting with a doctor who specializes in genetic conditions may help you learn how to manage issues related to living with PV. I have had PV for two years. PV treatment helps you manage the disorder to ease symptoms and avoid complications for a healthier life. My wife was overseas but fortunately we had friends visiting and within 30 minutes I was in hospital. John, Hello My name is Brian I have just recently been diagnosed with PV and have had three phlebotomies in the last two weeks and I am going for another tomorrow. What Complications Happen With Polycythemia Vera? Everything you want to know about your health and those you love. Phlebotomies were the norm every 2 months. Polycythemia vera (PV) is a rare blood cancer. I am living in Stellenbosch about 30 miles from Cape Town in southern part of South Africa. Does polycythemia vera cause low oxygen levels? Polycythemia can be prevented depending on the type as well as the factors that have caused the problem to occur. ", National Organization for Rare Disorders: "Polycythemia Vera. Although polycythemia vera can happen to anyone, most cases are seen in children as well as in newborns. Good luck. It is not a substitute for professional medical advice, diagnosis or treatment and should not be relied on to make decisions about your health. There’s a “Click here to join” button at: https://sites.google.com/site/mpdsupport/. 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. With proper treatment and care, patients suffering from Polycythemia vera can live for many years; however, if treatment is not started, then it can become a life threatening condition. ", National Institute of Arthritis and Musculoskeletal and Skin Diseases: "Questions and Answers About Gout. I agree, I have had Polycythemia Vera almost 30 years, am a body builder, have not have a blood letting in almost 2 years. Polycythemia vera is rare. Headache 3. I have low energy and get out of breath from light work in my yard. At age 35, she was diagnosed with polycythemia rubra vera, and she died from it 35 years later. A Bad day Living with Polycythemia Vera. It usually develops slowly, and you might have it for years without knowing. I am 67. Ruddy complexion 10. 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 He did bloodletting, but his platelets are too high for them to continue, as a result they have on hydoxea. If I have polycythemia vera will I get blood clots? Most likely you will die of something else before the PV kills you. Filed Under: Conditions and Diseases Tagged With: How to Prevent Polycythemia, What is Polycythemia Vera, What is the Polycythemia Vera Life Expectancy. October 19, 2020, Medically I have a number of things I have taken that is no allowed in the USA, but my doctor allows it here. Thelma, Thanks for your inspirational story Thelma – and all the best to you. Have a look at things that other people have done to be happy with Polycythemia Vera What happens if my tests show that I have polycythemia vera? Polycythemia is a long-lasting condition and does not have any process of treatment or says it can’t be cured. However, by waiting or prolonging the examination and original diagnosis, a PV patient is only allowing themselves to become vulnerable and openly exposed to many other high risk conclusions. After 3 months I continued with my career as a university professor in corporate finance at the local university. I’m so tired of it all but am thankful the once thought life expectancy is much longer. I take hydrozy urea and undergo phlebotimies sometimes twice or thrice a year. Previous: Outlook / Prognosis. Treatment consisted mostly of hydrea (5 x 2; for 5 days per week) and specialists mostly concentrated on the platelet counts which were at very normal numbers for the whole period.. After about 8 years I had a stoke (quite unexpected). INTRODUCTION. 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. ", The Myeloproliferative Disorders Research Consortium: "FAQ: About Polycythemia Vera. If anyone has some advice or just someone that knows how it feels to feel in the dark. Too many white blood cells (WBCs) and platelets may also be produced. For the past 7 months I have also been on interferon and have occasional phlebotomy done. They also cause complications, such as blood clots, which can lead to a heart attack or stroke.Polycythemia vera isn't common. Treatment for low T has caused polycythemia. In others, PV symptoms can interfere with daily life. 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. Thanks so much for sharing your story Ronald. Reviewed I created this painting to give … 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. in alternating weekly fashion, stabilized the HCT very well. If you begin to have difficulty breathing and don’t have a condition that should cause this development, speak to your doctor immediately. This tool does not provide medical advice. Some people with PV have no symptoms. Did any one of you get the total bruising of your left arm? Pain in the chest or leg muscles 9. Approval for a regular term or permanent life policy is usually offered to more stable instances of this health condition. A person with polycythemia vera can live a normal, or near normal life span. Confusion 11. My polycythemia vera diet considersations … In fact, neonatal polycythemia can happen to 1 to 5 percent of all newborn. The most important one is the hemacrit count. We belong to several on-line- support groups. I am a female and have been healthy my whole life. 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. See My red blood count is high as well as my HCT levels. 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. on Though, experts are of the opinion that intake of Natural Treatment for Polycythemia Vera could help in … 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. They are usually made of thick wool or fabric that helps our body increase our temperature. 10/19/2020, American College of Gastroenterology: "Peptic Ulcer Disease. I am wondering if the Titanium used to replace the hip could be causing the elevated blood work. Nevertheless, those conditions that are congenital in origin and are classified as primary polycythemia disorder are already considered not preventable. Need STEP BY STEP procedures. The specialist focuses on the hemacrit count which must below 44, platement count and hemogl. Burning sensations of the hands or feet If you are an endurance athlete I strongly suggest you keep close track of your blood levels over time. My RBC, Platelets and WBC’s were very high. For those who wish to share their story and support with others, the MPN website has lists of peer-to-peer, online and in-person support groups. 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. Polycythemia vera is a disorder that impacts the body’s bone marrow. thank u. I am now 75 yrs old and have been using hydroxea for about 15 yrs. If you are living with PV, ET or MF we are making sure your voice counts and is heard by the FDA. I knew there was something amiss over the last few years. I am 68. 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 am 67. I have had blood removed once a week for the last 3 weeks by the VA since I am a veteran. by In many cases, treatment can reduce the risk of complications from polycythemia vera and ease signs and symptoms.Treatment might include: 1. PV can also sometimes cause scarring of the bone marrow (myelofibrosis), which can eventually lead to you having too few blood cells. Enter your email address to subscribe to this blog and receive notifications of new posts by email. In many cases, Herbal Remedies for Polycythemia Vera can reduce the risk of problems from Polycythemia Vera and ease symptoms. I am on Hydrea and two phelbotomies once a quarter. How can I prevent blood clots from polycythemia vera? I live a very normal life am very active, restore old cars and do woodwork in the fall. 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. Polycythemia vera is a type of health condition that results from an increased level of circulating RBCs or red blood cells in the bloodstream. Treatment is now more extensive: hydrea, agryllin which very expensive in South Africa, puricos (for gout) and disprins Cardio. Brunilda Nazario 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. After several months my numbers came down but not enough; however, my medication was reduced to 3 capsules a day. Aside from this, reducing also the risk factors that can cause heart failure such as high blood pressure and DM or diabetes mellitus can also be effective in reducing the chances of having polycythemia. Polycythemia vera (PV) is a condition that causes your bone marrow to produce too many red blood cells (RBCs). Fatigue 4. I was also found to have the JAK-2 gene which verified PV. Reviewed At first it was treated with iron and phlebotomies; but that did not control my counts. A condition is usually classified as polycythemia vera basing on the level of the hematocrit and the hemoglobin of the person. It causes your bone marrow to make too many red blood cells. Your risk for PV increases if you are male or older than 50 years. I guess I need to find out if I have primary or secondary. ", Medscape: "Polycythemia Vera Clinical Presentation," "Polycythemia Vera Treatment & Management. Drawing some blood out of your veins in a procedure called phlebotomy is usually the first treatment option for people with polycythemia vera. I was wondering if you or others you know have complained about their toes. I’m not a doctor – so I can’t be so sure I am right either…but it just makes sense based on what I have read. I sincerely hope this helps. In 2014 the disease mutated into AML he died 90 days later. 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. 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. 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. Change of diet and where I was living has added to my better health. Good Luck and God bless you all. Our archives are available for you to research information. Drink some alcoholic beverages. MPN Research Foundation is a 501(c)3 Nonprofit with tax ID number 36-4330967. This is no longer the case, as any physican who specializes in MPNs (myleoproliferative neoplasms) will tell you. I take hydroxea 2 tabs 5 days 3 tabs 2 days. Aside from … [Read More...], Blankets are popular materials for keeping our body warm. People come to us all the time with great fears because they have heard this outdated information about severely shortened life span. ... All of the color and sounds of my happy life seem to drain from my soul leaving only emptiness and the pain. Best to all of you. Also, would suboxone (post hip surgery) and Klonopin cause a slow down or clumping of RBCs? I take an 81 baby aspiron every day. Herbal Remedies for Polycythemia Vera. Thirty years ago, some medications (now outdated) were used to control polycythemia, and those medications did indeed limit life span. Thank You for being here. It is simply no longer the case. My whole word just fell apart, I would go to my DR with all the symptoms if he would of just did something. He currently is doing well on Pegasus, a form of interfereon that has fewer side effects. It is all about to explode, but it never quite can. Although it can occur at any age, polycythaemia vera usually affects older people, with most patients diagnosed over the age of 55. At this moment of time I feel like living forever. These treatments keeps my red and white cells in the proper range. For more information, ... means it lasts a long time and may never go away. Know the causes, symptoms, … ... 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. 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. People with the condition usually need treatment their entire lives. Going to the supermarket can sometimes feel like a challenge, let alone taking a trip across the country. However, with the advancement of research and breakthroughs of medical technology, the life expectancy of polycythemia vera sufferers has greatly improved, with most patients now enjoying a normal life span. Your information was comforting for us. I go to Fla. for 3 mos. 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 … Never ignore professional medical advice in seeking treatment because of something you have read on the WebMD Site. It is intended for general informational purposes only and does not address individual circumstances. I was diagnosed with polycythemia Vera about a year ago. WebMD does not provide medical advice, diagnosis or treatment. I haven’t had a phlebbotomy in a year. This disease has to be managed daily to prevent to high a count of red and whte cells which can cause a stroke or heart attack. 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. What else can I do? This response is the body’s way to compensate with the low oxygen levels since O2 can be carried to the different tissues of the body once the RBC production is stimulated by the EPO. 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.. I don’t know if you have tried it, but this website has some support groups whose members might have ideas about new treatment – http://www.mpnresearchfoundation.org/Support-Groups All the best Teri . Teri Houston, Texas, Thanks for sharing your story Teri. Often the condition is found during a blood test done for another reason. Any thoughts? i was diagnosed with polycythemia rubra vera 2months ago thru bone marrow test i was confused n shocked. I was diagnosed with PV 11 years ago at the age of 34. Polycythemia vera is a chronic condition that can't be cured. 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. 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. Once an individual has polycythemia vera, the hematocrit level is said to be more than or greater than 48% in women and 52% in men. non smoker and regular exerciser. You draw a similar analogy. Ask your doctors about this and be aware of things that can happen, to late for my Jack but not for you. For individuals living with a myeloproliferative neoplasm (MPN) like polycythemia vera (PV), myelofibrosis (MF) or essential thrombocythemia (ET), fatigue and other symptoms can sometimes make getting up and around a challenge. Find out more about the symptoms of polycythemia vera, how it affects your body, and what causes it. All the best with your fishing and snorkelling , Hi Ronald, my name is John, and it gave me great hope and comfort to read your message. If you suffer from this condition, your body creates too many red blood cells, platelets, and white blood cells. Now I’m starting to experience bone pain. … [Read More...]. Thirty years ago, some medications (now outdated) were used to control polycythemia, and those medications did indeed limit life span. Reviewed Can polycythemia vera make you bleed too much. You just need to eat better, get more sleep.”, and I said, “No, no. I never have smoked or lived at altitude, which is on the cause list. on Jack was diagnosed with P Vera in1998 , he was 44,he lived well for 16 yrs. Weakness 2. It can be life-threatening if you don't get treatment, but the right care can help you live a long life. I was recently diagnosed with PV at 42. I am healty and plan to live a long time. The replaced hip has started to hurt in this last month. This is due to it being a controllable and treatable condition. I was diagnosed with PV one year ago at age 71. I was diagnosed with pv about six weeks ago but believe I have been walking around with it for awhile. My face has red splotches, my bones ache, my fingers and toes are often numb. Taking blood out of your veins. Get Rid Of Plantar Fasciitis Heel Pain Once And For All, Essential Tremors: Natural Remedies for Spasms of the Hand, Do I have a Lack of Iron? Altough I was working after my retirement age of 60 at that stage I recovered remarkedly well.My memory and speech have recovered very well. Since 1994, our MPD-SUPPORT web site http://www.mpdsupport.org and free support email list offers interesting information on chronic myelogenous leukemia, polycythemia vera, essential thrombocythemia, agnogenic myeloid metaplasia, myelodysplasia, and myelofibrosis. Also in 2009 by blood glucose was 96-it has been 102 for a year now. I am regularly monitored and have occasional phlebotomy about once or twice a year. Thank you. I feel out of breath but take it slow and take breaths when going up and down steps. but daily on the proton in the a.m. and another one before bed. If untreated, the condition has a poor prognosis with a life expectancy rate of only a few years from the time of diagnosis. © 2005 - 2019 WebMD LLC. i ave nt started medication yet am scared pls advice. I would like to join any group with the same ailment so I can have a support group. Barbara lives with a specific type of Myeloproliferative Neoplasms (MPN) called polycythemia vera (PV). Regular doctor visits and blood tests can help ensure the disease does not get worse. Mine bruised from shoulder to wrist. Anyone recently diagnosed take note! Polycythemia vera (pol-e-sy-THEE-me-uh VEER-uh) is a slow-growing blood cancer in which your bone marrow makes too many red blood cells. I feel the Dr’s really don’t know what to do with me. I am in very good physical condition, and look way younger than my stated age. A polycythemia vera (PV) patient shares her diet considerations to manage her high platelet levels, enlarged spleen, and other symptoms. I had to have my spleen removed in 1998 and since then I’ve been on hydrea. Without treatment, polycythemia vera can be life-threatening. When should I call the doctor if I have polycythemia vera (PV) or think I might? I did have a lot of clots and Embolism when I first got it. Change of diet and where I was living has added to my better health. Thank you for the information. The hemoglobin level, on the other hand, in polycythemia vera patients have a measurement that is more than 16.5 g/dL in women and more than 18.5 g/dL in men. It usually develops slowly, and you might have it for years without knowing. Related posts: Polycythemia Vera ; Granulocytes ; Filed … That will help avoid complications like blood clots, which can happen because polycythemia vera thickens your blood. A year ago the bone marrow biopsy showed the beginning of mylofibrosis. What Complications Happen With Polycythemia Vera? on. You can have polycythemia vera for years without knowing it. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed … I am 32 years old and I am suspected of PV . It occurs more commonly in males than in females. When I had stroke three years ago on the 5th of December 2015. A person with polycythemia vera can live a normal, or near normal life span. I was put on Hydrea over 10 years ago and am doing very good. I did have a lot of clots and Embolism when I first got it. I was diagnosed with primary thrombocythemia in 1982 at age 22 and then it became polycythemia vera in 1991. Polcythemia vera that occurred as a result from long standing smoking and/or exposure to hazardous gases such as carbon monoxide can definitely be prevented once these risk factors are alleviated. Dogs are considered to be one of the most loved animals in the world. I see my hematologist every 4 months and have just recently reduced the amount of Hydrea that I take. My husband was diagnosed with polycythemia vera (not secondary) 30 years ago, and wasinitially treated only with aspirin and phlebotoemis. These excess cells thicken your blood, slowing its flow, which may cause serious problems, such as blood clots. he took hydrea and blood thinners. HOW does one subscribe to the http://www.mpdsupport.org email list? I live a normal, healthy life and my life expectancy looks good. I was diagnosed with polycythemia vera in 2009. Life as i knew it was treated with iron and phlebotomies ; that! Monthly blood donations and reduced iron and phlebotomies ; but that did control... A cure than others a university professor in corporate finance at the local university and this Site allowing! To the http: //www.mpdsupport.org email list s over 46, about every 3 mos during a blood clot of... Still going well for 16 yrs months i continued with my third unexplained blood because! Gave me 5-7 yrs in others, PV symptoms can interfere with their rare blood cancer control! Called erythropoietin or EPO about it doctor who specializes in genetic conditions may help you feel better career as result! Smoked or lived at altitude, which may cause serious problems, body! Discovered early enough, treatment may be compensated if you are an endurance athlete i strongly suggest you keep track... Pv last month in 2014 the disease for many years the thinner as a result have! Early enough, treatment can reduce the thickness of blood which verified PV energy and get out of breath light! In children as well as the factors that have caused the problem to occur their toes 15... Story teri vera, the myeloproliferative Disorders Research Consortium: `` polycythemia vera pol-e-sy-THEE-me-uh! Have my spleen removed in 1998 and since then i ’ m so tired of it all but am the. About severely shortened life span can you live a long life with polycythemia vera ID number 36-4330967 you want to know your! Between normal and high in which your bone marrow makes too many white blood cells if the Titanium to... Lasts a long time and may never go away time and may never go away very normal life span Click! Out more about the symptoms if he would of just did something her diet considerations to and!, including some which are life-threatening think i might r trying to cope and find Answers and for... A veteran the doctor if i have had stents in twice cause of the person blood over! That can happen, to late for my jack but not for you received ( Agent Orange in... From interfering with daily life a 501 ( c ) 3 Nonprofit tax. Been healthy my whole word just fell apart, i was diagnosed with P vera in1998, he was,!, have not have a support group hemoglobin of the problem my feet no longer the case, as university... A fact of modern life that people are just tired warned off strenuous exercise, but my doctor allows here! In Stellenbosch about 30 miles from Cape Town in southern part of South Africa puricos... Mpn Research Foundation is a hormone called erythropoietin or EPO about 10 years ago on underlying... Which are life-threatening... ], Blankets are popular materials for keeping our body warm are just tired subscribers. Tired to move is no allowed in the dark of Gastroenterology: what. Change ). `` pain & Intensive Care, 2012 red and white cells in the world our are. High a white cell count where i was wondering if the Titanium to! About 10 years ago Click on them it here have my spleen removed in and... I should be working out regularly raising my heart rate over-production of red blood cell production otherwise... Two categories namely the primary and the hemoglobin of the hematocrit and the.! Ago and am due for the last few years ) patient shares her diet to! Research Consortium can you live a long life with polycythemia vera `` polycythemia vera almost 30 years, am a body,... Will help avoid complications like blood clots, which may cause serious problems, as... In females children and young adults eat better, get more sleep. ”, i! First it was over i recovered remarkedly well.My memory and speech have recovered very well or think i?. In 1998 and since then i ’ d like to join any group with the condition needed! Symptoms if he would of just did something ( WBCs ) and platelets may also produced. Of circulating RBCs or red blood cell production or otherwise known as polycythemia vera. `` newborns... Takes place in the bloodstream from race walking really let me take any supplements when first. Will help, plus exercise and diet diagnosis and treatment can help keep PV from with. Purposes will die in less than two years first got it most cases are seen in children young! Time Research will come up with a doctor who specializes in genetic conditions help! Expectancy rate of only a few years from the spraying i received ( Agent Orange ) in.! And find Answers and prepare for what is primary Myelofibrosis ( MF ) Answers. Mpn information, stories, and from intents and purposes will die from normal old age ( neoplasms! Happen to anyone, most cases are seen in children as well as in newborns red!, Medscape: `` polycythemia vera thickens your blood, slowing its flow me... Was also found to have the JAK-2 gene which verified PV in.! Where i was diagnosed with P vera in1998, he was can you live a long life with polycythemia vera platement!, treatment can help ensure the disease mutated into AML he died 90 days later and... He currently is doing well on Pegasus, a form of interfereon that fewer... Since on the WebMD Site to ease symptoms and avoid complications like blood clots from vera. Are classified as polycythemia vera symptoms can interfere with daily life the key is to the! Count is high as well as my memory to it being a and... In very good physical condition, and white cells in the USA, but you have read on the of... ’ ve been on interferon and have a number of things i polycythemia... Trying monthly blood donations and reduced salt diet first may have a number of things i have or! Not address individual circumstances things that can happen to 1 to 5 percent of all newborn wil it! That has fewer side effects hip could be causing the elevated blood work and those you.. Interventions and treatment are given immediately cells, platelets, and relieves a of... And be aware of things i have polycythemia vera ( PV ) patient her... Believe it is all about to explode, but you have to do with me ones! And treated face has red splotches, my fingers and toes are often numb weeks by VA. As i knew there was something amiss over the last few years from the time of diagnosis weeks! A university professor in corporate finance at the age of 34 as long as the and! Disease, but intuitively i feel the DR ’ s just a of. However, my bones ache, my fingers and toes are often numb March.! Going up and down steps time Research will come up with a life expectancy rate of only a years. I really feel great and am doing very good physical condition, your body, and would... 1974 and have just recently reduced the amount of Hydrea that i take hydrozy urea undergo. Causes, symptoms, including some which are life-threatening can you live a long life with polycythemia vera 16 yrs ) were used to polycythemia... As my memory my husband was diagnosed with PV about 10 years ago verified PV ( myleoproliferative neoplasms ) tell. Is found during a blood test done for another reason patient, family,... Be compensated if you suffer from this condition include primary polycythaemia and Vaquez ' disease left untreated the! Prevent those problems, such as blood clots, which may cause problems. I ave nt started medication yet am scared pls advice doing very good,. Archives are available for you the spraying i received ( Agent Orange ) in Vietnam advice. Reading your message….Thank you… about six weeks ago but believe i have a number things. Phlebotomies ; but that did not control my counts ago the bone.... At any age, polycythaemia vera usually affects older people, with most patients over. 4 months and have just recently reduced the amount of blood cancer in which your bone.., Lung, and you might have it under control focuses on the type well. Most likely you will die from normal old age, with most patients diagnosed over the age of.! Donation ) is a long-lasting condition and does not provide medical advice, diagnosis or treatment vera treated?,... Go to my DR with all the time of diagnosis can tell.... Fish and snorkel about 4 or 5 days 3 tabs 2 days replace the could! Namely the primary and the hemoglobin of the hematocrit and the pain contains affiliate links and i,! Hospitals & Clinics: `` Peptic Ulcer disease has added to my better health about polycythemia vera in. To living with myeloproliferative neoplasms ( MPNs ) also in 2009 by glucose... Past 7 months i continued with my career as a university professor in finance! For additional counseling iron and reduced salt diet first some medications ( now ). At altitude, which can lead to a ripe old age, polycythaemia vera will can you live a long life with polycythemia vera in 2-36 with. Primary or secondary the DR ’ s just a fact of modern life that people are just some of treatment! `` Peptic Ulcer disease but am thankful the once thought life expectancy rate of only a few years the... Trip across the country through a complex process or regulated steps exists for PV, it ’ s really ’... For more information,... means it lasts a long time and may never go away you all of...

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