You wil know it when your quarterly blood tests show too low a white cell count instead of too high a white cell count. I was diagnosed with PV one year ago at age 71. 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? In 2007 I had a hip replaced due to a torn labrum from race walking. 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. PV treatment helps you manage the disorder to ease symptoms and avoid complications for a healthier life. Note: This post contains affiliate links and I may be compensated if you click on them. So people with PV can live 15-20 years after it is discovered. Treatment for low T has caused polycythemia. I was diagnosed with PV about 12 years ago. In many cases, a person diagnosed with polycythaemia vera can expect to live for more than 15 years. I created this painting to give … It is intended for general informational purposes only and does not address individual circumstances. Burning sensations of the hands or feet It causes your bone marrow to make too many red blood cells. Early diagnosis and treatment can help keep PV from interfering with daily life. Treatment is now more extensive: hydrea, agryllin which very expensive in South Africa, puricos (for gout) and disprins Cardio. Polycythemia vera (PV) is a condition that causes your bone marrow to produce too many red blood cells (RBCs). It can be life-threatening if you don't get treatment, but the right care can help you live a long life. You just need to eat better, get more sleep.”, and I said, “No, no. 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. he took hydrea and blood thinners. 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. 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. 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. 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 hope this gives hope to those who may have been alarmed. My RBC, Platelets and WBC’s were very high. I knew there was something amiss over the last few years. "What Are the Signs and Symptoms of Polycythemia Vera? Normally phlebotomy (Blood donation) is done for setting right the condition. 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. From: You will then die in 2-36 months with continous treatment of an infection. After 3 months I continued with my career as a university professor in corporate finance at the local university. My red blood count is high as well as my HCT levels. 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. What is the outlook for people with polycythemia vera (PV)? When it happened CV it I was devastated. 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. Eventually ones bone marrow will scar over and the body will not be able to produce red and white blookd cells. ... All of the color and sounds of my happy life seem to drain from my soul leaving only emptiness and the pain. The over-production of red blood cells can cause a variety of symptoms, including some which are life-threatening. Never ignore professional medical advice in seeking treatment because of something you have read on the WebMD Site. My polycythemia vera diet considersations … but daily on the proton in the a.m. and another one before bed. The most important one is the hemacrit count. At this I am suffering from gout but I believe it is only over the short term. Pain in the chest or leg muscles 9. I am healty and plan to live a long time. If you are an endurance athlete I strongly suggest you keep close track of your blood levels over time. I was recently diagnosed with PV at 42. ", The Myeloproliferative Disorders Research Consortium: "FAQ: About Polycythemia Vera. Polycythemia can be a potentially fatal disease, but fortunately if discovered early enough, treatment may be possible. Any thoughts? There’s a “Click here to join” button at: https://sites.google.com/site/mpdsupport/. 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 really feel great and am very active and berlieve I will live to a ripe old age. How can I prevent blood clots from polycythemia vera? INTRODUCTION. Now, I know. Weakness 2. How do I know if I have a blood clot because of polycythemia vera? If you think you may have a medical emergency, immediately call your doctor or dial 911. 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. I am wondering if the Titanium used to replace the hip could be causing the elevated blood work. I was diagnosed with polycythemia Vera about a year ago. I take an 81 baby aspiron every day. Symptoms include: Sweating (at night … on additional information. 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. 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. … [Read More...]. What else can I do? Good: Polycythemia vera patients have an excellent chance of living out a normal life span if properly monitored and treated. My levels of RBC, Hemoglobin and now hemocratin fluctuate between normal and high. THIS TOOL DOES NOT PROVIDE MEDICAL ADVICE. This is information that is outdated. I was diagnosed with PVera about 25 years ago. I was diagnosed with PV 11 years ago at the age of 34. Now I’m starting to experience bone pain. 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. I was diagnosed with pv about six weeks ago but believe I have been walking around with it for awhile. Polycythemia vera (pol-e-sy-THEE-me-uh VEER-uh) is a type of blood cancer. 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. 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 … It usually develops slowly, and you might have it for years without knowing. When should I call the doctor if I have polycythemia vera (PV) or think I might? What do you have to do to be happy with Polycythemia Vera? He currently is doing well on Pegasus, a form of interfereon that has fewer side effects. I am living in Stellenbosch about 30 miles from Cape Town in southern part of South Africa. Your risk for PV increases if you are male or older than 50 years. A polycythemia vera (PV) patient shares her diet considerations to manage her high platelet levels, enlarged spleen, and other symptoms. You draw a similar analogy. I am in very good physical condition, and look way younger than my stated age. Consulting with a doctor who specializes in genetic conditions may help you learn how to manage issues related to living with PV. ", Cancer Care: "Managing Symptoms of Polycythemia Vera (PV).". I was misdiagnosed with PV about 10 years ago. 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. 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. Nevertheless, those conditions that are congenital in origin and are classified as primary polycythemia disorder are already considered not preventable. PV is usually caused by a gene mutation (change). ", University of Iowa Hospitals & Clinics: "Polycythemia Vera.". I give blood when HCT s over 46, about every 3 mos. Thank you for the information. Everything you want to know about your health and those you love. I tell my primary physician and my Hemotologist about this but they don’t seem that concerned. Polycythemia vera is a chronic condition that can't be cured. I am a female and have been healthy my whole life. My wife was overseas but fortunately we had friends visiting and within 30 minutes I was in hospital. I take hydroxea 2 tabs 5 days 3 tabs 2 days. I did have a lot of clots and Embolism when I first got it. 10/19/2020, American College of Gastroenterology: "Peptic Ulcer Disease. Reviewed Ask your doctors about this and be aware of things that can happen, to late for my Jack but not for you. Anyone – patient, family member, or health professional, is welcome to join our growing list of subscribers. While no cure exists for PV, it can be controlled through treatment, and you can live with the disease for many years. Polycythemia can be prevented depending on the type as well as the factors that have caused the problem to occur. 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. At age 35, she was diagnosed with polycythemia rubra vera, and she died from it 35 years later. I am regularly monitored and have occasional phlebotomy about once or twice a year. Symptoms of secondary polycythemia are the same as those for primary polycythemia and may include: 1. We belong to several on-line- support groups. Jack was diagnosed with P Vera in1998 , he was 44,he lived well for 16 yrs. i was diagnosed with polycythemia rubra vera 2months ago thru bone marrow test i was confused n shocked. PV can also sometimes cause scarring of the bone marrow (myelofibrosis), which can eventually lead to you having too few blood cells. 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). 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. Thirty years ago, some medications (now outdated) were used to control polycythemia, and those medications did indeed limit life span. I have had PV for two years. Drawing some blood out of your veins in a procedure called phlebotomy is usually the first treatment option for people with polycythemia vera. Since then I was very active in playing tennis, hiking, cycling, fishing and doing business consultations mostly in Johannesburg, 1000 miles from home. Shortness of breath 6. In many cases, treatment can reduce the risk of complications from polycythemia vera and ease signs and symptoms.Treatment might include: 1. Treatment focuses on reducing your amount of blood cells. Know the causes, symptoms, … I am 58 years old now. I was put on Hydrea over 10 years ago and am doing very good. I never have smoked or lived at altitude, which is on the cause list. we r trying to cope and find answers and prepare for what is next. I have a number of things I have taken that is no allowed in the USA, but my doctor allows it here. Have a look at things that other people have done to be happy with Polycythemia Vera non smoker and regular exerciser. In fact, neonatal polycythemia can happen to 1 to 5 percent of all newborn. Aside from … [Read More...], Blankets are popular materials for keeping our body warm. I live a normal, healthy life and my life expectancy looks good. ", National Organization for Rare Disorders: "Polycythemia Vera. Mine bruised from shoulder to wrist. Good luck. At the age of 45 years I had a heart attack after a squash match . As it turned out, I was simply dehydrated and have a naturally high RBC count. For the past 7 months I have also been on interferon and have occasional phlebotomy done. Fatigue 4. i ave nt started medication yet am scared pls advice. I’m so tired of it all but am thankful the once thought life expectancy is much longer. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed … LIVING WITH POLYCYTHEMIA VERA (PV) Information, resources, and support for wherever you are on your journey with PV. Thanks so much for sharing your story Ronald. A condition is usually classified as polycythemia vera basing on the level of the hematocrit and the hemoglobin of the person. Itching (pruritus) 8. Hello Marlyne , How old was your huspand when was diagnosticated ? This hormone is mainly secreted or produced by the kidneys; nevertheless, approximately 10% of the total amount of EPO in the body is also created by the liver. © 2005 - 2019 WebMD LLC. ", MPN Research Foundation: "What is Primary Myelofibrosis (MF)? Ruddy complexion 10. Though, experts are of the opinion that intake of Natural Treatment for Polycythemia Vera could help in … HOW does one subscribe to the http://www.mpdsupport.org email list? ", National Heart, Lung, and Blood Institute: "How Is Polycythemia Vera Treated?" Headache 3. In general, the outlook is considered favorable for people who are experiencing secondary types of polycythemia vera cases. There is no cure for PV. Phlebotomies were the norm every 2 months. 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. It is all about to explode, but it never quite can. Ten years ago, when he needed more control of his blood counts, he used hydrea, and several forms of interfereons. Can polycythemia vera make you bleed too much. Also, would suboxone (post hip surgery) and Klonopin cause a slow down or clumping of RBCs? I was also found to have the JAK-2 gene which verified PV. I see my hematologist every 4 months and have just recently reduced the amount of Hydrea that I take. I am 68. Best to all of you. 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. Although it can occur at any age, polycythaemia vera usually affects older people, with most patients diagnosed over the age of 55. 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. Enter your email address to subscribe to this blog and receive notifications of new posts by email. Did any one of you get the total bruising of your left arm? Rare and complex diseases are still possible to manage and treat as long as the right and proper interventions and treatment are given immediately. I have had blood removed once a week for the last 3 weeks by the VA since I am a veteran. 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. If anyone has some advice or just someone that knows how it feels to feel in the dark. In addition to these, polycythemia vera is also divided into two categories namely the primary and the secondary. Most likely you will die of something else before the PV kills you. 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. In others, PV symptoms can interfere with daily life. After several months my numbers came down but not enough; however, my medication was reduced to 3 capsules a day. These excess cells thicken your blood, slowing its flow, which may cause serious problems, such as blood clots. I have low energy and get out of breath from light work in my yard. 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. 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. 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. Thank you and this site for allowing me to find you and reading your message….Thank you…. My face has red splotches, my bones ache, my fingers and toes are often numb. Apparrently the disease started 1 year or 2 earlier. 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. If anyone out there had heard of a new treatment I’d like to hear about it! I take hydrozy urea and undergo phlebotimies sometimes twice or thrice a year. 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 . MPN Research Foundation is a 501(c)3 Nonprofit with tax ID number 36-4330967. He did bloodletting, but his platelets are too high for them to continue, as a result they have on hydoxea. I had to have my spleen removed in 1998 and since then I’ve been on hydrea.
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