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karen59's Message Board Messages

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Hello Janets. I, too, am a 54 woman with PV. I have had this for 25 years (first diagnosed in 1988). I am on Hydrea and a baby aspirin. I became very depressed when it became clear almost 2 years ago that because of all of the symptoms that I was experiencing, that I could no longer work. I stopped working and applied for social security disability, in which I just won my appeal. I experince the same issues as you do, no energy, finding being active nearly impossible, itching, fitful sleep, bone pain that has become excruating, appetite that comes and goes, nausea...the list could go on and on. I have also been diagnosed with cirrohsis of the liver caused by the clot that was found when I was first with PV. I sought out a therapist and psychiatrist due to the depression. It was so severe I was close to becoming totally housebound. I was counseled on how to deal with a disease that will never go away, and given medicine to help deal with the mood swings and anxiety, as I told them I was very afraid of dying. This regime has worked for me. I must say that I periodically have "down" days, but they are few and far between. Please know that you are not alone and try not to isolate yourself. Once isolating yourself begins, it is difficult to getting back out of your home. I also do what I can, when I can do it, and try not to beat myself up over things that I used to be able to do. Please feel free to contact me whenever you need a shoulder to cry on, as I would be happy to listen.

There is a wonderful group on Facebook for sufferers of PV. Look under Polycythemia Vera and ask to join. They are a wonderful group filled with a wealth of information and support.

Karen,

You are on the right path when you find a caring and knowledgeable hematologist. Your doctor makes such a huge impact in your treatment. Have you had to do a bone marrow biopsy before? It is always helpful to find someone who is going through what you have, as you can bond and understand each other. Take care of yourself, listen to what your body tells you, and take it one day at a time. I wish you sunny days. I appreciate each day more, even if they turn out to be what I hadn't envisioned. Keep me posted and think positive!

Hi Karen, I, too, have been diagnosed with polycythemia vera, however, it was at a very young age of 29. I am now 53 years old and have been taking the drug Hydrea for 24 years. I am fatigued, experience bouts of weakness, headaches, very itchy skin which is worse in the winter months, and have been diagnosed with depression, anxiety and hypertension. My disease manifested itself in my liver, in a condition call Budd-Chiar syndrome. I have found the best hematologist in the world, who has been on every step of the rocky journey with me. My advice to you is to run, not walk, to a hematologist/oncologist. They can do a bone marrow biopsy, and get you started on a treatment plan as soon as possible. I have my good days and my bad days, and I somehow, with God's love and grace find a way to push through it all. I wish you the best, will be praying for you and want you to know that you are not alone in your journey. Take care of your body, listen to what it tells you. If it says rest, then rest. If it tells you to sleep, then sleep. Go with the good days, and the bad days. Please let me know who you are doing. The disease is NOT a death sentence!

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