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. But the pain in my feet has gone away since on the thinner. 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. Hope that all is still going well for your husband. It is a difficult disorder to diagnose. ... All of the color and sounds of my happy life seem to drain from my soul leaving only emptiness and the pain. on From: Hello Marlyne , How old was your huspand when was diagnosticated ? The prognosis or the outlook of a disease actually depends on a lot of factors. I was recently diagnosed with PV at 42. 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. ", The Myeloproliferative Disorders Research Consortium: "FAQ: About Polycythemia Vera. After 3 months I continued with my career as a university professor in corporate finance at the local university. 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. MPN Research Foundation is a 501(c)3 Nonprofit with tax ID number 36-4330967. Itching (pruritus) 8. My husband was diagnosed with polycythemia vera (not secondary) 30 years ago, and wasinitially treated only with aspirin and phlebotoemis. Change of diet and where I was living has added to my better health. 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 live a normal, healthy life and my life expectancy looks good. What are the … See 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. 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. At age 35, she was diagnosed with polycythemia rubra vera, and she died from it 35 years later. I was diagnosed with PV 11 years ago at the age of 34. Filed Under: Conditions and Diseases Tagged With: How to Prevent Polycythemia, What is Polycythemia Vera, What is the Polycythemia Vera Life Expectancy. If you suffer from this condition, your body creates too many red blood cells, platelets, and white blood cells. If well controlled, polycythaemia should not affect your life expectancy, and you should be able to live a normal life. You draw a similar analogy. At this I am suffering from gout but I believe it is only over the short term. 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. 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 … There’s a “Click here to join” button at: https://sites.google.com/site/mpdsupport/. Looking for a community offering education and support for patients and caregivers living with myeloproliferative neoplasms (MPNs)? Your information was comforting for us. In fact, neonatal polycythemia can happen to 1 to 5 percent of all newborn. Perhaps over that time research will come up with a cure. You will then die in 2-36 months with continous treatment of an infection. Polycythemia can be a potentially fatal disease, but fortunately if discovered early enough, treatment may be possible. 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.. My polycythemia vera diet considersations … A condition is usually classified as polycythemia vera basing on the level of the hematocrit and the hemoglobin of the person. Polycythemia vera is rare. Polycythemia vera (pol-e-sy-THEE-me-uh VEER-uh) is a type of blood cancer. Please refer me to them. What Complications Happen With Polycythemia Vera? Without treatment, polycythemia vera can be life-threatening. 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. i ave nt started medication yet am scared pls advice. It certainly gives hope, and relieves a lot of people’s minds about what they can expect after being diagnosed with PV. on I did have a lot of clots and Embolism when I first got it. Barbara lives with a specific type of Myeloproliferative Neoplasms (MPN) called polycythemia vera (PV). I’m so tired of it all but am thankful the once thought life expectancy is much longer. 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. I am 68. 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. WE are just looking into this. 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. Ask your doctor for a referral for a genetic specialist for additional counseling. I take an 81 baby aspiron every day. Early diagnosis and treatment can help keep PV from interfering with daily life. and fish and snorkel about 4 or 5 days a wk. I was also found to have the JAK-2 gene which verified PV. When I had stroke three years ago on the 5th of December 2015. 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. Ringing in the ears (tinnitus) 12. People with the condition usually need treatment their entire lives. My wife was overseas but fortunately we had friends visiting and within 30 minutes I was in hospital. PV is usually caused by a gene mutation (change). 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. 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. Polycythemia vera (PV) is a type of blood cancer that increases the risk of blot clots including deep vein thrombosis (DVT). They are usually made of thick wool or fabric that helps our body increase our temperature. many people with polycythemia vera live a normal life with this rare blood cancer under control. In fact, dogs are the most common house pet all across the globe. Lightheadedness 5. Although polycythemia vera can happen to anyone, most cases are seen in children as well as in newborns. You can have polycythemia vera for years without knowing it. Your risk for PV increases if you are male or older than 50 years. Polycythemia vera is a disorder that impacts the body’s bone marrow. I had to have my spleen removed in 1998 and since then I’ve been on hydrea. These treatments keeps my red and white cells in the proper range. "What Are the Signs and Symptoms of Polycythemia Vera? Dogs are considered to be one of the most loved animals in the world. Thank you and this site for allowing me to find you and reading your message….Thank you…. Anyone recently diagnosed take note! Visual disturbances 7. Good Luck and God bless you all. In general, the outlook is considered favorable for people who are experiencing secondary types of polycythemia vera cases. It occurs more commonly in males than in females. additional information. The over-production of red blood cells can cause a variety of symptoms, including some which are life-threatening. i was diagnosed with polycythemia rubra vera 2months ago thru bone marrow test i was confused n shocked. 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 was diagnosed with polycythemia Vera about a year ago. 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. Am trying monthly blood donations and reduced iron and reduced salt diet first. While no cure exists for PV, it can be controlled through treatment, and you can live with the disease for many years. I am not negatively influenced by my medicine at all. Leukemia & Lymphoma Society: "Myelofibrosis Facts. For the past 7 months I have also been on interferon and have occasional phlebotomy done. I take hydrozy urea and undergo phlebotimies sometimes twice or thrice a year. He did bloodletting, but his platelets are too high for them to continue, as a result they have on hydoxea. 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