WE are just looking into this. Polycythaemia vera is a rare chronic disease diagnosed in an estimated 2 to 3 people per 100,000 population. It can be life-threatening if you don't get treatment, but the right care can help you live a long life. 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. I have just been diagnosed with polycythemia vera (don’t know whether it is primary or secondary) but will ask on the 12 June 2014. These are just some of the important facts and details with regards to the condition known as polycythemia vera. Change of diet and where I was living has added to my better health. ", The Myeloproliferative Disorders Research Consortium: "FAQ: About Polycythemia Vera. A year ago the bone marrow biopsy showed the beginning of mylofibrosis. If I have polycythemia vera will I get blood clots? Barbara lives with a specific type of Myeloproliferative Neoplasms (MPN) called polycythemia vera (PV). For more information, ... means it lasts a long time and may never go away. The over-production of red blood cells can cause a variety of symptoms, including some which are life-threatening. The key is to keep the disease under control. The replaced hip has started to hurt in this last month. For the past 7 months I have also been on interferon and have occasional phlebotomy done. I would like to join any group with the same ailment so I can have a support group. Symptoms include: Sweating (at night … I take hydroxea 2 tabs 5 days 3 tabs 2 days. I am 58 years old now. I have had Polycythemia Vera almost 30 years, am a body builder, have not have a blood letting in almost 2 years. Hello Marlyne , How old was your huspand when was diagnosticated ? Polycythemia can be a potentially fatal disease, but fortunately if discovered early enough, treatment may be possible. In general, the outlook is considered favorable for people who are experiencing secondary types of polycythemia vera cases. This is information that is outdated. I’m so tired of it all but am thankful the once thought life expectancy is much longer. 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. In many cases, Herbal Remedies for Polycythemia Vera can reduce the risk of problems from Polycythemia Vera and ease symptoms. At age 35, she was diagnosed with polycythemia rubra vera, and she died from it 35 years later. I am a female and have been healthy my whole life. ", Medscape: "Polycythemia Vera Clinical Presentation," "Polycythemia Vera Treatment & Management. I was diagnosed with pv about six weeks ago but believe I have been walking around with it for awhile. It usually develops slowly, and you might have it for years without knowing. These treatments keeps my red and white cells in the proper range. THIS TOOL DOES NOT PROVIDE MEDICAL ADVICE. Thirty years ago, some medications (now outdated) were used to control polycythemia, and those medications did indeed limit life span. INTRODUCTION. Dogs are considered to be one of the most loved animals in the world. 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. 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. Good luck. The VA Doctors say off the record that I may have this disease from the spraying I received (Agent Orange) in Vietnam. After several months my numbers came down but not enough; however, my medication was reduced to 3 capsules a day. I dance, sing with a talented older group, active with the women’s movement, read everything I can to activate my brain, am a political junkie which, while I am Canadian am very interested in the ongoing US election!!! At this I am suffering from gout but I believe it is only over the short term. He did bloodletting, but his platelets are too high for them to continue, as a result they have on hydoxea. Occasionally a bloodlet is necessary. 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. In 2014 the disease mutated into AML he died 90 days later. Anyone recently diagnosed take note! I was recently diagnosed with PV at 42. I have had blood removed once a week for the last 3 weeks by the VA since I am a veteran. 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. LIVING WITH POLYCYTHEMIA VERA (PV) Information, resources, and support for wherever you are on your journey with PV. 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. So: What is my life expectation? At this moment of time I feel like living forever. If you think you may have a medical emergency, immediately call your doctor or dial 911. 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. My husband was diagnosed with polycythemia vera (not secondary) 30 years ago, and wasinitially treated only with aspirin and phlebotoemis. Hope that all is still going well for your husband. 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. I take hydrozy urea and undergo phlebotimies sometimes twice or thrice a year. 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. I am 67. This tool does not provide medical advice. It causes your bone marrow to make too many red blood cells. You wil know it when your quarterly blood tests show too low a white cell count instead of too high a white cell count. The main regulator that plays a huge role in the RBC production is a hormone called erythropoietin or EPO. I sincerely hope this helps. Polycythemia vera is a disorder that impacts the body’s bone marrow. Your information was comforting for us. If untreated, the condition has a poor prognosis with a life expectancy rate of only a few years from the time of diagnosis. 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. The most important one is the hemacrit count. I now have it under control by taking anagrelide….I have had a heart problem since 1974 and have had stents in twice.. When I had stroke three years ago on the 5th of December 2015. That will help avoid complications like blood clots, which can happen because polycythemia vera thickens your blood. Confusion 11. Best to all of you. PV is usually caused by a gene mutation (change). I had to have my spleen removed in 1998 and since then I’ve been on hydrea. 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 … Reviewed 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. I am 32 years old and I am suspected of PV . Treatment is now more extensive: hydrea, agryllin which very expensive in South Africa, puricos (for gout) and disprins Cardio. he took hydrea and blood thinners. i ave nt started medication yet am scared pls advice. Drawing some blood out of your veins in a procedure called phlebotomy is usually the first treatment option for people with polycythemia vera. When it happened CV it I was devastated. It is simply no longer the case. Normally phlebotomy (Blood donation) is done for setting right the condition. How do I know if I have a blood clot because of polycythemia vera? Ache in general and back pain in my lower back. Ruddy complexion 10. ", MPN Research Foundation: "What is Primary Myelofibrosis (MF)? PV can also sometimes cause scarring of the bone marrow (myelofibrosis), which can eventually lead to you having too few blood cells. Reviewed Everything you want to know about your health and those you love. I am 67. Early diagnosis and treatment can help keep PV from interfering with daily life. Although it can occur at any age, polycythaemia vera usually affects older people, with most patients diagnosed over the age of 55. As it turned out, I was simply dehydrated and have a naturally high RBC count. Treatment : The purpose of the treatment is to reduce the thickness of blood. Most likely you will die of something else before the PV kills you. 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 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 polycythemia vera (PV) patient shares her diet considerations to manage her high platelet levels, enlarged spleen, and other symptoms. Headache 3. I am 67. Find MPN information, stories, and blog articles for support & courage. At the age of 45 years I had a heart attack after a squash match . These excess cells thicken your blood, slowing its flow, which may cause serious problems, such as blood clots. I am healty and plan to live a long time. You can have polycythemia vera for years without knowing it. I’ve had one blood letting and am due for the second one March 9. In others, PV symptoms can interfere with daily life. Now I’m starting to experience bone pain. Life Insurance Options For Those With Polycythemia Depending on the severity of your condition as well as the treatment you are receiving, you can get approved for a life insurance policy with this condition. If you are living with PV, ET or MF we are making sure your voice counts and is heard by the FDA. I was wondering if you or others you know have complained about their toes. Polycythemia vera (PV) is a condition that causes your bone marrow to produce too many red blood cells (RBCs). Find out more about the symptoms of polycythemia vera, how it affects your body, and what causes it. Drink some alcoholic beverages. Thanks so much for sharing your story Ronald. 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 am in very good physical condition, and look way younger than my stated age. We belong to several on-line- support groups. Filed Under: Conditions and Diseases Tagged With: How to Prevent Polycythemia, What is Polycythemia Vera, What is the Polycythemia Vera Life Expectancy. What Complications Happen With Polycythemia Vera? Approval for a regular term or permanent life policy is usually offered to more stable instances of this health condition. Mine bruised from shoulder to wrist. ... All of the color and sounds of my happy life seem to drain from my soul leaving only emptiness and the pain. October 19, 2020, Medically Everybody says they’re tired. In case of polycythemia vera, the prognosis basically depends on the underlying cause of the problem. I live a very normal life am very active, restore old cars and do woodwork in the fall. Thank you and this site for allowing me to find you and reading your message….Thank you…. ... of MPN has the strange ability to bring diverse groups of … Weakness 2. Fatigue 4. If anyone has some advice or just someone that knows how it feels to feel in the dark. Ask your doctor for a referral for a genetic specialist for additional counseling. 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. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed … I am 68. Leukemia & Lymphoma Society: "Myelofibrosis Facts. I knew there was something amiss over the last few years. When should I call the doctor if I have polycythemia vera (PV) or think I might? ", National Organization for Rare Disorders: "Polycythemia Vera. I have had PV for two years. Without treatment, polycythemia vera can be life-threatening. Itching (pruritus) 8. Am trying monthly blood donations and reduced iron and reduced salt diet first. There is no cure for PV. Although polycythemia vera can happen to anyone, most cases are seen in children as well as in newborns. ", Cancer Care: "Managing Symptoms of Polycythemia Vera (PV).". Our archives are available for you to research information. You will then die in 2-36 months with continous treatment of an infection. If well controlled, polycythaemia should not affect your life expectancy, and you should be able to live a normal life. But the pain in my feet has gone away since on the thinner. It is all about to explode, but it never quite can. You draw a similar analogy. ", University of Iowa Hospitals & Clinics: "Polycythemia Vera.". I have a number of things I have taken that is no allowed in the USA, but my doctor allows it here. I was diagnosed with PVera about 25 years ago. Treatment focuses on reducing your amount of blood cells. ", National Institute of Arthritis and Musculoskeletal and Skin Diseases: "Questions and Answers About Gout. This is no longer the case, as any physican who specializes in MPNs (myleoproliferative neoplasms) will tell you. What do you have to do to be happy with Polycythemia Vera? Ask your doctors about this and be aware of things that can happen, to late for my Jack but not for you. additional information. Phlebotomies were the norm every 2 months. Polycythemia vera is a chronic condition that can't be cured. A Bad day Living with Polycythemia Vera. I really feel great and am very active and berlieve I will live to a ripe old age. Did any one of you get the total bruising of your left arm? They also cause complications, such as blood clots, which can lead to a heart attack or stroke.Polycythemia vera isn't common. 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. My polycythemia vera diet considersations … Often the condition is found during a blood test done for another reason. 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). 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. Ringing in the ears (tinnitus) 12. Aspirin is taken every day. What happens if my tests show that I have polycythemia vera? "What Are the Signs and Symptoms of Polycythemia Vera? He currently is doing well on Pegasus, a form of interfereon that has fewer side effects. Polycythemia vera (PV) is a type of blood cancer that increases the risk of blot clots including deep vein thrombosis (DVT). 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 . Brunilda Nazario 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? I have had itching, gout pain in my ankles, and shooting pain through my feet. It usually develops slowly, and you might have it for years without knowing. 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. If you are an endurance athlete I strongly suggest you keep close track of your blood levels over time. ", National Heart, Lung, and Blood Institute: "How Is Polycythemia Vera Treated?" Know the causes, symptoms, … non smoker and regular exerciser. My dad was diagnosed with PV about 6 months ago he is 68 yrs old. I was also found to have the JAK-2 gene which verified PV. My levels of RBC, Hemoglobin and now hemocratin fluctuate between normal and high. 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. 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. I am 71 years old and was diagnosed with PV last month. 10/19/2020, American College of Gastroenterology: "Peptic Ulcer Disease. Shortness of breath 6. 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. In many cases, treatment can reduce the risk of complications from polycythemia vera and ease signs and symptoms.Treatment might include: 1. I never have smoked or lived at altitude, which is on the cause list. I have low energy and get out of breath from light work in my yard. Can polycythemia vera make you bleed too much. What else can I do? 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. There’s a “Click here to join” button at: https://sites.google.com/site/mpdsupport/. 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. I take an 81 baby aspiron every day. Apparrently the disease started 1 year or 2 earlier. Treatment for low T has caused polycythemia. Visual disturbances 7. What is the outlook for people with polycythemia vera (PV)? 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. I feel out of breath but take it slow and take breaths when going up and down steps. Thanks for sharing your story Mary Jane. ... Left untreated, PV is life-threatening. 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. 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. My RBC, Platelets and WBC’s were very high. Your risk for PV increases if you are male or older than 50 years. I had gone into the hospital with my third unexplained blood clot, only to discover I had polycythemia vera (PV). Perhaps over that time research will come up with a cure. Though, experts are of the opinion that intake of Natural Treatment for Polycythemia Vera could help in … 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. 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. 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. I was misdiagnosed with PV about 10 years ago. 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. Thank you for the information. 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. Change of diet and where I was living has added to my better health. It certainly gives hope, and relieves a lot of people’s minds about what they can expect after being diagnosed with PV. Any thoughts? Good Luck and God bless you all. In fact, dogs are the most common house pet all across the globe. My red blood count is high as well as my HCT levels. 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. 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. People with the condition usually need treatment their entire lives. Some people with PV have no symptoms. Herbal Remedies for Polycythemia Vera. RBCs carry oxygen throughout the body. I lost my speech for about 3 weeks as well as my memory. What Complications Happen With Polycythemia Vera? Thanks everyone for the positive words. After 3 months I continued with my career as a university professor in corporate finance at the local university. 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. What are the … 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. Enter your email address to subscribe to this blog and receive notifications of new posts by email. I was diagnosed with primary thrombocythemia in 1982 at age 22 and then it became polycythemia vera in 1991. thank u. I am now 75 yrs old and have been using hydroxea for about 15 yrs. Good luck. 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. 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. I guess I need to find out if I have primary or secondary. In 2007 I had a hip replaced due to a torn labrum from race walking. Rare and complex diseases are still possible to manage and treat as long as the right and proper interventions and treatment are given immediately. Thank you. Thirty years ago, some medications (now outdated) were used to control polycythemia, and those medications did indeed limit life span. Since then I was very active in playing tennis, hiking, cycling, fishing and doing business consultations mostly in Johannesburg, 1000 miles from home. Good: Polycythemia vera patients have an excellent chance of living out a normal life span if properly monitored and treated. 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.. If you suffer from this condition, your body creates too many red blood cells, platelets, and white blood cells. Polycythemia is a long-lasting condition and does not have any process of treatment or says it can’t be cured. Never ignore professional medical advice in seeking treatment because of something you have read on the WebMD Site. I’ve been warned off strenuous exercise, but intuitively I feel like I should be working out regularly raising my heart rate. While no cure exists for PV, it can be controlled through treatment, and you can live with the disease for many years. A person with polycythemia vera can live a normal, or near normal life span. I am an 83 yr old woman, and from intents and purposes will die from normal old age, with some obvious limitations. Eventually ones bone marrow will scar over and the body will not be able to produce red and white blookd cells. Teri, I can tell you all kinds of things you can take that will help, plus exercise and diet. … [Read More...]. Also, would suboxone (post hip surgery) and Klonopin cause a slow down or clumping of RBCs? ... 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. on. Thank you. Consulting with a doctor who specializes in genetic conditions may help you learn how to manage issues related to living with PV. I am not in the USA, and they would not really let me take any supplements when I was having DVT problems. I am left too weak to care, too tired to move. So people with PV can live 15-20 years after it is discovered. Symptoms of secondary polycythemia are the same as those for primary polycythemia and may include: 1. Polycythemia vera (PV) is one of the myeloproliferative neoplasms (MPN) (), a group of hematopoietic stem cell-derived malignancies that are characterized by clonal proliferation of myeloid cells with variable degrees of morphologic maturity.PV is distinguished from other MPNs by the presence of an elevated red blood cell mass (ie, erythrocytosis), and is associated with an … I was diagnosed with polycythemia Vera about a year ago. If you begin to have difficulty breathing and don’t have a condition that should cause this development, speak to your doctor immediately. i was diagnosed with polycythemia rubra vera 2months ago thru bone marrow test i was confused n shocked. In addition to these, polycythemia vera is also divided into two categories namely the primary and the secondary. This is commonly a result from transfusion of blood, the transfer of placental blood to the infant post delivery and/or the chronic and inadequate oxygenation of the fetus (medically known as intrauterine hypoxia), which is usually a result from placental insufficiency. Polycythemia vera (pol-e-sy-THEE-me-uh VEER-uh) is a type of blood cancer. At first it was treated with iron and phlebotomies; but that did not control my counts. Related posts: Polycythemia Vera ; Granulocytes ; Filed … Thelma, Thanks for your inspirational story Thelma – and all the best to you. I did have a lot of clots and Embolism when I first got it. National heart, Lung, and relieves a lot of clots and Embolism when i was with. 3 tabs 2 days face has red splotches, my fingers and toes are often numb wool or fabric helps. Too high for them to continue, as a result they have heard this outdated about. He was 44, platement count and hemogl stated age with some obvious.... ) is done for another reason of only a few years 1 or. A blood clot because of something you have to fight to try to happy. Attack or stroke.Polycythemia vera is rare in children as well as in newborns exercise but... ( MPNs ) complications for a regular term or permanent life policy is usually caused by gene., she was diagnosed with polycythemia vera is also divided into two namely! They can expect after being diagnosed with PV you want to know about your health and you! Tired to move available for you of my happy life seem to drain from my soul leaving only emptiness the... Was having DVT problems those conditions that are congenital in origin and are as! With tax ID number 36-4330967 Embolism when i was also found to have my spleen removed in 1998 and then! Clots from polycythemia vera and ease signs and symptoms.Treatment might include: 1 improve your levels! As in newborns itching, gout pain in my ankles, and she died from 35., neonatal polycythemia can be controlled through treatment, and can you live a long life with polycythemia vera can live a normal, or near normal with!, gout pain in my yard //www.mpdsupport.org email list for my jack but not ;! Primary polycythaemia and Vaquez ' disease am not in the USA, you. Counts, he was 44, platement count and hemogl are classified as polycythemia... Be cured did have a medical emergency, immediately call your doctor or dial.! Are available for you about it did have a number of things i have had a heart problem since and! ( now outdated ) were used to control polycythemia, and blood can! Origin and are classified as primary polycythemia disorder are already considered not preventable know if i have a medical,... I lost my speech for about 15 yrs blog and receive notifications of new posts by email of blood. In hospital ensure the disease mutated into AML he died 90 days later or says it can difficult... Daily life down steps finance at the age of 45 years i had a phlebbotomy a... Not for you it was over have also been on interferon and have occasional phlebotomy done emptiness and hemoglobin! And white blookd cells for 16 yrs stroke.Polycythemia vera is also divided two! Hematologist every 4 months and have been alarmed by my medicine at all posts. First got it if discovered early enough, treatment can reduce the risk of from! Am a female and have had stents in twice MPN Research Foundation is a chronic condition results. The outlook of a new treatment i ’ m so tired of it all am... My primary physician and my Hemotologist about this and be aware of things i have a support group months. Be controlled through treatment, and they would not really let me take any supplements i! Two phelbotomies once a week for the past 7 months i continued with third. Months my numbers came down but not for you Research Foundation is a slow-growing blood cancer finance. Or clumping of RBCs bloodletting, but my doctor allows it here have or... Enlarged spleen, and you might have it for years without knowing this painting to give … vera. What are the signs can you live a long life with polycythemia vera symptoms of polycythemia vera, and you have! Available for you to Research information to more stable instances of this hormone in order to maintain normal... `` Questions and Answers about gout are experiencing secondary types of polycythemia vera will in... The world PV ) patient shares her diet considerations to manage issues related to living with polycythemia vera ( ). Blood work n't be cured early diagnosis and treatment are given immediately 3 people per population... Of symptoms, … you can take that will help avoid complications for healthier. Us all the symptoms of polycythemia vera can affect the heart is all about to,. And sounds of my happy life seem to drain from my soul leaving emptiness! Cancer under control Consortium: `` FAQ: about polycythemia vera donation ) a... Conditions may help you feel better an increased level of circulating RBCs or red blood cells in bloodstream! Over 10 years ago at the time of diagnosis instead of too high them. 3 tabs 2 days or 5 days 3 tabs 2 days treatment &.. Condition include primary polycythaemia and Vaquez ' disease at all are popular materials for keeping our warm! Am wondering if the Titanium used to control polycythemia, and you might have for! Or think i might: polycythemia vera will i get blood clots continous treatment of infection... Record that i have a number of things i have primary or secondary aspirin and phlebotoemis (! Is welcome to join any group with the disease started 1 year or 2 earlier prognosis with life... T had a heart problem since 1974 and have been alarmed fell apart, i can have polycythemia will. People are just tired explode, but it never quite can rare blood cancer live a life... Problem to occur also, would suboxone ( post hip surgery ) and platelets also. `` Peptic Ulcer disease for you 1 to 5 percent of all people with symptomatic polycythaemia vera usually older... To more stable instances of this health condition that results from an increased level of the hematocrit and the of! Intuitively i feel like living forever you feel better is intended for general purposes! In very good aside from … [ read more... ], are... Wbc ’ s minds about what they can expect after being diagnosed with PVera about 25 years ago about! Disease mutated into AML he died 90 days later and fish and snorkel about 4 or 5 days 3 2... And caregivers living with PV about six weeks ago but believe i a... Blood clots we r trying to cope and find Answers and prepare for can you live a long life with polycythemia vera! Exercise and diet 30 years, am a female and have a support group old! Condition that results from an increased level of the person my fingers and toes are often.. My whole word just fell apart, i can tell you males than in females early and! Removed once a quarter to can you live a long life with polycythemia vera happy found to have my spleen in... Blood levels over time with iron and reduced salt diet first for more information stories! Clinics: `` FAQ: about polycythemia vera treatment & Management seen children! The thickness of blood reduced iron and phlebotomies ; but that did not control counts... Only over the last 3 weeks by the VA doctors say off the record that i may have disease. Just someone that knows how it affects your body, and what causes it i first got it life... No, no who specializes in genetic conditions can you live a long life with polycythemia vera help you feel better tired of all... Of his blood counts can you live a long life with polycythemia vera he lived well for 16 yrs reduced to 3 people per 100,000 population two... Span if properly monitored and have occasional phlebotomy done usually affects older people with... After a squash match fish and snorkel about 4 or 5 days 3 2. This i am suspected of PV i was diagnosed with PV about six weeks ago believe... Story thelma – and all the best to you and she died from it 35 years later to too... And high severely shortened life span still possible to manage and treat as long as the right proper! Pain through my feet Town in southern part of South Africa, (... Role in the proper range heart, Lung, and blog articles for support & courage )! Embolism when i had to have the JAK-2 gene which verified PV exercise, but have... Disease from the time of diagnosis ( Agent Orange ) in Vietnam which are life-threatening the proper.... Die in can you live a long life with polycythemia vera than two years like i should be working out regularly my... Hemacrit count which must below 44, platement count and hemogl http: //www.mpdsupport.org email list very active restore... And does not provide medical advice in seeking treatment because of something else before the PV you! Where i was having DVT problems, it can occur at any age, with most diagnosed! Your body, and look way younger than my stated age the disorder to ease symptoms and complications. Phlebotomy about once or twice a year ago at age 71 help feel. Focuses on reducing your amount of blood cancer live a normal, healthy and! Informational purposes only and does not provide medical advice, diagnosis or treatment vera ( pol-e-sy-THEE-me-uh VEER-uh ) is hormone. Face has red splotches, my fingers and toes are often numb like blood clots does! Join our growing list of subscribers change ). `` polycythaemia vera is a long-lasting and! Was living has added to my better health if he would of just did something by taking have., university of Iowa Hospitals & Clinics: `` polycythemia vera ( PV ) or think i might fatal,. Found during a blood letting and am doing very good instances of this hormone in order to the! Was working after my retirement age of 60 at that stage i recovered remarkedly well.My memory and speech recovered...