I have Polycythemia Vera (PV) | How I Found Out, Treatment, and Next Steps
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- čas přidán 9. 07. 2024
- For more information about Polycythemia Vera please visit:
Mayo Clinic - www.mayoclinic.org/diseases-c...
Voices of MPN - www.voicesofmpn.com/polycythe...
National Organization for Rare Disorders - rarediseases.org/rare-disease...
Interesting...I have been diagnosed as well about two months ago. My hematologist said PV is a low grade leukemia. There are risks of it developing into more serious or higher grades of blood cancer as well. Not trying to scare you. But it's important to know that so you watch out for it. God bless you all in your journey with this.
I was told I had this three years ago. I didn't know what it meant and my MD didn't do much about it. A year and a half ago I started having fatigue, not knowing it was related. I started going to the health club. I do 25 minutes on the stationary bike, and it helps with fatigue. I recently started having itchiness on my back, and dizziness. Vitamin C and D seem to help the itchy back, and I've started taking 81 mg aspirin. Knowing that this might be blood cancer, freaks the hell out of me. I will continue to educate myself about this and battle it in every way i can. I've had health battles before and this is my new one. I don't know if i'll win this one, but i will put up a fight.
Thanks for sharing your story , I was diagnosed in 2016 with PV, am an Africa American in which these blood disorder is mainly diagnosed in Caucasian men over 50 , I was shocked to hear about my diagnosis but like you said I r rather have PV than any other blood disorder. My P V is under control now that’s to the treatment and change that I had to make was my diet , I don’t eat red meat in which that one change helps my blood count . I drink nothing but alkaline water as well plus take my meds. Again thanks for sharing your story n again people your body it will give you symptoms.. ❤
Thanks for sharing your story. My husband is African American and was diagnosed about a month ago and he’s on chemo pills. He’s starting to display a lot more of the symptoms. However, he’s actually had symptoms probably for the last year or so they were just random and so we didn’t realize what it was. He went for regular physical, and our PCP discovered it and sent him to a hematologist. I think right now he’s experiencing a lot of emotions and has stopped eating red meat and just doing a lot of research to see what he can and can’t eat. He’s been complaining about some of his organs hurting, dizziness, and definitely the tingling/numbing in his legs. I think he’ll need to incorporate more exercise and change his diet. I pray that you’re managing yours. I will suggest to him to drink alkaline water.
I appreciate your story-I absolutely in your shoes .
Thank you for sharing almost a year now been diagnose with PV. Your confidence give more strength to those who has. Thank you 😊
Thanks for sharing, my mum just got diagnosed with PV she is 59 and as you said is scary when you hear the word cancer, this one is manageable, she had bone marrow test had 3 different blood thinners on which she had reaction so she is on aspirin and withdrawals blood every week for now.
Hope both of you will manage this the best way you can. You have the support definitely
I have a friend who is diagnosed with this disorder. Thank you for this video.
I'm right there with you. Making the changes needed, and being on the positive side of this.
Is anyone suffering from Aquagenic Puritius brought on by PV. I get these itching sensations after showering at night. My doctor tells me to take cold showers. I use this Japanese roll on called Kin Kan cool liniment. It helps to soothe the itching, then go sit in and air condition room to help it even more. About 15.mins. tops.
Thank you. This beginning part is scary and you have made me feel much better about the next steps to come.
I was diagnosed with PV yesterday. I appreciate your video, thank you very much❤️
Thank you very much for this information!!!🙏💗 you are helping me how to motivate my dad, please I will appreciate more videos! You are on my prayers 🙏💗
Greetings from Puerto Rico 🇵🇷. Thank you for sharing! Just was diagnosed I’m 38 now and being looking at vídeos to understand a little better about PV. Take care brother 😎
Hope you do well Zak!!!
I was diagnosed with PV, Leukocytosis and ET just yesterday after a blood marrow biopsy. I have have been sick for several years with periods of remission. The last 2 years I’ve been in a nose dive with the last few months being nearly unable to care for myself bc of fatigue and dizziness. I have seen many drs with disappointing results. Over and over sent home sick, no answers and no follow up plan. I now see a hematologist whom I like, but he was watching my blood for almost a year b4 he sent me in for BMB. But even that turned into a fiasco with the first test was aborted and then I had to call over and over to get the test rescheduled. Took a month of trying to get someone to do their job. I am 67, alone and widowed. I’ve been begging for help, but the medical system makes me feel like they’d rather I just go home and die. Kind of hard to stay optimistic.
I don’t want a response. Just putting it out there that there’s another layer to this for a lot of people. Insurance companies are paying doctors to NOT practice medicine. I could have been diagnosed a long while ago but I suppose they saw me as a hypochondriac, but my myriad of symptoms were real and they just didn’t care. Yes I am preoccupied with my ill health. When you’re sick and alone it’s terrifying. I worry I will die and my dog will have to use me for food. Just saying.
Sounds like the UK's NHS treated me...
I feel for you sister❣️ allow me to give you a big hug,we have much in common
Sorry, what is ET ?
@@chetanrs
Essential thrombcythemia
I’m so sorry you have been hurt by the medical system. I would say be proactive with your labs, and ask them what certain things mean and what you can do to continue to live independent and healthfully!
I'm on the verge of possibly being diagnosed with PV. Will find out more in a week or two. Your video and story has made me feel much better about my future. Even if my tests come back negative, I would like to thank you for easing my anxiety over this potential diagnosis. Hopefully this comment finds you still doing well.
Here for the same reason. My RBC, hemoglobin, and hematocrit were high on my blood draw this week. Seeing the hematologist in a few weeks. How high were your levels?
@LP-km7gj I'm here too for the same reason. My hematocrit and Hemoglobin are high and I'm being sent to a hematologist. How did yours turn out? You doing ok? I'm super nervous.
@@curiousc9259 have had a bunch of testing since including bone marrow biopsy but so far no answers…I was Jak2 negative. They are moving away from PV at this point and are doing echo of heart and ct of organs now. Only half of my bone marrow biopsy results are back but the first part was enough for them to say they don’t think it’s PV anymore. For three weeks they were convinced it was because of my blood levels and my EPO was low/normal at 3. But with no Jak2 mutation it threw them off.
@@LP-km7gjme too
there is something called mms that can beat this easily.
I'm new to having it. Thank you so much for sharing!! And it has also opened my eyes to spending my time more meaningful!! This was great for me to watch. Again thanks for sharing!!
I will keep you in my prayers!
Thank you!
Thank you for your video. I was just diagnosed with PV and had that same "pity party" since being told. But., then I saw your video and am glad I did. I feel better after listening to you and seeing your positive attitude. I think I can now adopt your philosophy and live my best life. So thank you for doing this.
Thanks for sharing. Stay positive and help keep the kids and coaches learning by continuing to put out the educational videos and interviews. We'll keep watching.
Will do, thank you!
Great descriptions. I'm on this learning curve too. Thanks for sharing.
I have a diagnosis of PV. I'm 54. I got back to my hemotologist soon and will get things rolling. Thanks for the info.
I got diagnosed with PV also thank you for sharing it's made me feel better!!
You rock dude!!
i am so grateful about my health team n knowing what it is
Thank you for sharing this information
Thank you for sharing and hope you will get sorted all this out soon and get the desired results. One of our family member got suspected PV diagnosis and currently undergoing further tests. One of the first thing we sat down to do is how to reduce stress levels and what food to eat which is natural blood thinner.
Thank you so much for this video. This was very helpful and it was good to see you so optimistic and hopeful. You're an inspiration. My Dad was just recently diagnosed with PV and I'm so worried. This video really helped. Thanks a lot.
Same my dad was diagnosed too, and this too is very helpful.
Hope your dad is doing well now.
Im glad you did this video. It has helped me.
Thank you for your video, Xan. I was diagnosed in 2012. I had an episode of chest pains and went to the ER. They kept me overnight and ran ever single cardiac test they had but the only thing they flagged was that my platelets were elevated. They told me to follow up with my primary care doctor. Like you, he did a CBC again and said he was referring me to a Hematologist. I had NO idea that Hematologists were also Oncologists! That doctor sent the labs he ordered to a lab in San Diego and two weeks later he told me I had ET, another form of Myeloproliferative Neoplasm, and that it was blood cancer. I was 56 years old. When my husband and I left his office, I got in our vehicle and began to cry. I felt WAY too young to be diagnosed with the big "C". We lived in a rural community outside Sacramento at the time. I told my husband that I wanted a second opinion from Stanford, so we called them and they called me in as a new HEM/ONC patient. After more testing, they told me that I didn't have ET, but that I had PV instead. Like you, since I was under the age of 60, my treatment was 81mg aspirin daily and monthly phlebotomies for four years. Once a patient is 60 years old, the standard of care for PV calls for cytoreductive drugs (chemotherapy). Why? Because patients age 60+ generally have more co-morbidities begin to arise and controlling the production of blood cells and platelets in the marrow becomes even more important. The first line therapy is Hydroxyurea,, which I couldn't tolerate due to side effects. This allowed my doctor to prescribe JAKAFI, which is a Jak2 inhibitor. The only complaint I have is that JAKAFI is designed for Myelofibrosis patients (those with the most advanced form of MPN's), whose spleens have enlarged and are unable to eat because there is no room in their abdomens. Jakafi was designed to stimulate appetite and interacts with the hormone leptin in the body. The end result is that my already healthy appetite became constant. The average patient on Jakafi gains 14-28 pounds slowly, over time. In the 7 years I have been taking Jakafi, I gained 26 pounds. With that weight gain, other health issues began to rise - high BP, higher Cholesterol and higher blood glucose. My diet has always been very clean and healthy, so this was very frustrating. This year, I finally told my Stanford MPN Specialist that I wanted to get off Jakafi and asked about alternatives. At present, we have weaned me down slowly from 20mg 2x day to 5mg in the morning only. We are waiting for my WBC count to get high enough to take an injectable drug called Besremi (a form of alpha interferon) to see if I can tolerate it. My husband and I have attended a conference hosted by the MPN Education Foundation at the Mayo Clinic in Scottsdale, AZ every other year for several years. Two Hundred and Fifty patients from all over the world come to hear MPN expert doctors and researchers talk about nutrition, treatments, clinical trial developments, and other things related to MPN's. I highly recommend this conference. It has always been very reassuring. The primary symptom I have experienced all these years is crushing fatigue that begins to set in by 3pm each day. It turns out that FATIGUE is the number one symptom people with MPN's report. The doctors are unsure why this is, but it is always on every symptom map when MPN patients are surveyed. Xan, thank you again very much for your video. I've had PV for 12 years and so far, have managed to have a right total knee replacement without PV complications and will likely have my left knee replaced in 2025. I want to remain fit and active for as long as I can. Best of luck to you. You are in good company as there are many people with PV in the world. Patricia
Sad to hear, but keep up your positive attitude, keep fighting. Take care!
Thank you!
@@xanbarksdale How are doing?
@@xanbarksdaleare you alive
I have had PV for 3 years treated with Hydroxyurea and blood letting twice a month. Friends have asked about it. I'm sending a link to your video, which is great. Thanks Xan
How are you doing now / any symptoms?
I have had PV and Hemochromatosis for 16 years. My symptoms and blood numbers have gotten worse in the last few years. I cycle 3 times a week and exercise and do resistance training. It is difficult to exercise sometimes but it really does help with the blood circulation and pressure. I actually suffer from Anaemia due to regular Phlebotomies ( every 1-2 months). I take an iron supplement even though I have Hemochromatosis. Bottom line you will manage this disease mostly by adapting to YOUR particular condition.
Possibly in the spent stage.
Any médecine ?? From the doctor ?
@@am30wish I am not on any direct medicines for the PV, but, I have just been diagnosed with early Diabetes. I am now on blood pressure meds and cholesterol meds too.
@@Sedge63 im try to do fasting it will help regulate your insulin with the proper keto diet ! Bless you
@@Sedge63 why haven’t the doctors put you on any medications for PV? Do they think blood letting every 1-2 months is the best treatment? What is you Hematocrit and hemoglobin staying at doing just that?
I was diagnosed with PV on December 2016 and I am from the Philippines. Thank you for sharing what you have been experiencing. God bless you.
Great video. I was diagnosed with PV in 2018 at 49 after they diagnosed the JAK 2 mutation. On Hydroxy carbamide and aspirin daily and run a haeomaticrit of 42 to 45% and maintain a healthy regime. I agree on the google information which was massively inaccurate. Very informative video.
Stay Strong !
That's the only option! Thanks!
I am a 65 year old grandmother who has been through a great deal of trauma in the last few years, and now this! (Doc not certain; still being tested for JAK2). Thanks for your information!
❤
Wow I didnt know a hematologist was an oncology doctor..Glad you caught it early
Thank you for this video! I been searching CZcams for information on this. My red blood cells, hemoglobin, and hematocrit were all high. My regular check up and blood work found it. I 100% also recommend regular check ups
So do you have PV? Asking because I’m having the same issue
Did you guys have it or no?
Thank you for your information l have just been told my nephew has been given this same diagnose he is like you take,s good care of himself age 33 Jan 2022.so thanks again very helpful.
Same story as mine, I'm glad your doing well
Thank you for sharing . . . I feel the exact same way after my diagnoses.
My missus has just been diagnosed with this, and we have never been as scared in our lives as we are now. Anything positive is welcomed, so thanks for this. She has been diagnosed early, and that is only because she had the good sense to ask questions about her headaches and tiredness. I would suggest that asking questions, and not holding back because you think that you are asking stupid questions, has saved her a lot of trouble in the future. My best wishes to everyone watching this.
Thank youuuu so much.
Thank you for this video
Got it too. Found out because I had incredibly bad migraines. Can't do phlebotomies. Now on jakavi/ruxolitinib and hydoxyurea. And you're right, if I have to have blood cancer. Than this is at least survivable. Hold tight
Thank you for sharing. The MPN research foundation is helping to fund research and give hope to patients with this type of blood cancer.
So sorry to hear this. Sending Prayers to You and your family from DUTCH FORK HIGHSCHOOL VARSITY BASEBALL FAMILY and The West Family in Irmo,SC #strikeoutcancer
Thank you very much!
I also developed Left Ventricular Hypertrophy due to the thickness of my blood. They draw my blood every two weeks. It sounds like it affects each one a little different. On a better note I am glad you made this video. Thank you and God bless
Thank you Xan!!! Glenn's Mrs.
I got diagnosed with pv 2 days before Christmas this year. I have watched this 1 video and yours is one of my favorites. Informative and inspirational. When it comes to something like this it is still scary. I have one question. Secondary or primary
If you are jak2 positive they say you are primary. Have heard that's not always true. I've had PV for 3 years cought late and it's caused alot of problems. Stay on top of it and don't let doctors delay things! If you have a bad feeling about your doctor find another to see what they say. Had a doctor say I didn't need a treatment for 9 months saying it was a little high. I went to a cancer center and when they got my records my hematocrit had been almost 70 the whole time! Anything over 45 in a man needs a treatment. The doctor said what in the heck was he thinking! Always go with your gut. Good luck!
Thank you for sharing. My dad also have this PV and he got the treatment by doctor every months but I have some question about this disease. Could you please sharing your experience about the food restriction for this disease.
I was diagnosed with Polcythemia 8 years ago, and that was it, now I am 56 as of last month, was recently hospitalized and now my hemoglobin and hematocrit is through the roof, and now explains a lot of other health issues I have. I have had 3 silent heart attacks since the age of 48, I eat healthy, but am also a diabetic,and have issues from that as well. I have circulation issues, clotting issues etc. WBC has been high as well and no infections. I'm starting to get scared. thanks for your video, it has eased my mind a bit. I am now looking for a new PC I have 5 grandchildren and a new great grandson to live for. had a CT two weeks ago that showed I know have a blot clot on my aortic valve,and I have all the symptoms except for the enlarged spleen and nose bleeds. I'm just scared that my next blood work up will show that I have advanced to Myelofibrosis,The “spent phase”. Hope this comment finds you well. God bless you! One last thing, thank you SO much for making it a pertitnant point to go see your PCP My dad never went, "didn't need to" didn't smoke, drink, and died suddenly when he was 48, my son's father was the same and died suddenly at the age of 34 both of heart attacks. people, PLEASE get a yearly physical.
how high were your hematocrit and hemoglobin?
Look into Serrapeptase, a powerful enzyme with many good effects, clears clots too
And Lumbrokinase!
Thanks for this video, my husband was just diagnosed with PV, also 39 years and together we have 4 kids, my husband is not as athletic as you, however watching your video has given me peace of mind.
The positive thing about diseases is that they help us to value the time we have with our loved ones and to prepare for the afterlife, because no one has a guaranteed life.
Thanks so much for this, Xan. I was just diagnosed with PV myself last December and did the pity party thing for a bit too but like you, I am optimistic, feeling good and grateful for the treatments available to us. Wishing you the best ♥️
Thank you, wishing you the best too!
Cómo sigues Carol? cómo fue tu diagnóstico. Si tienes facebook podemos conversar allí.
@@xanbarksdale what was your hematocrit level? When u first found out
I was in denial for a few years
@actuallycarol how are you doing now?
Thank you 🙏😇💥
I just found out last week.😢 thank you for your information God bless bro
I'm 38yrs old
Hi I am also diagnosed PV since 2018. From philippines
I have high hemoglobin and red blood cells count and type 2 diabetes. Waiting on the doctor to see what the results are for blood work. Hopefully it is not pv or worse! Did a ekg it was normal. So will see what doctor says. I’m 37. Prayers🙏 !
I have PV and just found out the end of march my primary care dr caught in regular blood test then sent to hematology only I am 73 and I am being given a good prognosis as far as another 13 years so i'm good. no need to reply just wanted to double down about getting regular blood work done. I never did until I hit 60 when I lost my health insurance I started going to the VA and they have been fantastic!!
Greetings from Singapore. Thanks for sharing. Just got diagnosed PV last month; like yourself, I'm 39. My doctor's starting me with hydroxyurea.
I hate to hear the news, but I’m glad you caught it early and your Dr. has a good plan for you!
Hydroxyurea taking patients should not father a kid according to my haematologist
@@babumanu895 Why is that so?
My mom recently passed from PV. It was horrible. It sapped her energy, she ended up with no appetite, couldn't tolerate the chemo drugs. I found her deceased in her bed... out of the blue. Worst day of my life. I hope you keep positive and I'm sending much love to you! ❤
❤❤❤
Sorry bout your mom ...I have PV for the pass 15 years I feel very very weak ...doing transfusion now I try to eat healthy and keep walking for 30 mins morning and evening prayer alot
I am having my first blood tests for PV next week. I am 55 as of a couple days ago and have been waiting for a neurological appointment for 6 months . my sister called me for my birthday and I was telling her about my symptoms and she said it sounds like what our father died with.
I diagnosted with high hemoglobin , how ever my doc is discovering if i have PV or not , thanks broo and you give us courage
my dear, do u have PV? My hemoglobin is high too and I'm in a process of testing see if I have PV. Thank you!
@@keithng5355 finally no , it was just because of medication i took it , i retest my blood and y hemoglobin back to normal , but all my sympathy for all who suffering from PV , they are inspiration for me
@@alaaeddinedridi1678 glad to know that, stay healthy as always. Thanks for your response.
@@alaaeddinedridi1678 Bro how much was your haemoglobin count..? On initial test..?
@@sayoojp9091 was more than 16.6 grams , i forgot exactly , it can sometimes happen as side effect of medication drugs , like what happen to me
I feel you man! I have Essential Thrombocythemia which is the same family as PV. Just did a bone marrow aspiration a couple of hours ago to exclude PV and Myelofibrosis....
We have the same disease ! Are you taking any médecine, doctors suggested for me interferon injections im so worried , don’t know what to , and my platelets are getting higher and higher
@@am30wish really sorry to hear that. The only medications i take is Aspirin. My platelets are below 1.5 so the doctor said not to proceed with any other medications
@@constantinosevangelou8849 im sorry too ,hopefully we can find a way to ease the symptoms and lower the platelets , mine as well are 1M .333 before there were only 900 , im taking aspirin as well .. keep me updated please may be we can share some hope here , take care
is bone marrow aspiration painful?
@@jaclynmaicamalate1393 Yes unfortunately it was quite painful
Did your doctor talk to you about blood oxalates? Most likely not. My doctor didn’t even mention that my (secondary) Polycythemia might be affected by what I eat. No, Dr. Google can quite often be misleading, but I’ve always been interested in nutrition, and this made total sense. I didn’t know I shouldn’t cut them out suddenly, but of course I did. A few days later I began feeling like I had a horrible case of the flu which seemed to drag on forever. A few days later, one of my rabbit hole research led me to the topic of “oxalate dumping.” (The process your body goes through ridding itself of oxalates suddenly.) I would have thought I was only imagining this was what I was suffering from except for one weird symptom only a female would have. That really convinced me I had been oxalate dumping. About a week later, I was feeling so much better, but found I had been eating a high oxalate food I thought was safe. One last thing - you might find a lot of information about kidneys and oxalates, and you might think I’ve misunderstood the info. Do a little more investigating and you’ll fall into tons of info about polycythemia and oxalates. By the way, there IS a connection, because my kidneys were damaged with too much iron concentration. Good luck to you!
Can you tell me where to go to get more info on the pv/oxylate connection? I'm going to hear Sally Norton talk at a healers fair this saturday . 9/16 in NC.
My story is like you, I when for a regular check my primary doctor send me for a especially. Just find I have PV. I will be like you strong.
I got diagnosed with this 5 years ago ,you get very sweaty especially as me who works a manual job,but I've never let it bother me , mainly because of covid ,I was apparently getting blood letted 2 years ago then the covid happened ,now I'm working an either manual job I get more sweaty but it's all from my head ,wad thinking maybe I should go back to the doctors
Hey man, TRT can cause an increase in your hematocrit. Not stating you are on it, but if you are and you’re concerned with longevity, this would be a huge factor to look at. Wishing you a long and healthy life man 🤙🏽
Yeah read my comment about this
@skyler
I was going to start yet but since I think I have pv I decided not to :(
Hello!
Please do you have any info on ET
ESSENTIAL THROMBOCYTOSIS ?
I was diagnosed with pv 3 years ago and went through two months of weekly phlebotomy to lower my hematocrit and hemoglobin to safe levels and was taking hydroxuria until my liver started failing. I then was prescribed busolfan until that failed. I’ve been taking jakifi for the last 7 months and so far so good. The biggest problem for me is the constant fatigue but I try to stay active and have a positive attitude. You’re going to be fine with your attitude
i was taking hydroxyurea too during two months..i feel like desperate, i dont want to die young :(
@@astripratita646 i have refused to take it 😢 it has bad side effects
@@am30wishI am not taking hydroxeura either, there’s too much risk with transformation into other cancers
@@astripratita646 how high were your results?
How high was your Hemoglobin and Hematocrit? Mine are barely above normal and my doc is sending me to a hematologist and I'm scared. 😢😢😢😢
I was diagnosed with PV 4 years ago ❤️🙏🏼.
What are your treatments?
Hi iam also. Diagnsed with PCV.
Good info sndvenvouraging
Hi welcome to the pv journey like me you can manage this keep going
Shortness of breath and headaches were my first symptoms. Please go to a doctor if you have this. My recovery took several months after I lost power in my right leg, but the phlebotomies work. (This vid reminds me i need to go in again) 😊 Thanks!
What where your RBC, hematocrit, hemoglobin?
Just started treatment 5 days ago. I’m 60. Honestly, I feel very lucky that this is the blood cancer I have. I was experiencing symptoms but it never occurred to me it was anything serious. Mine was caught during a routine exam.
I’m adjusting to the fact that I’ll have to keep this managed.. but again, I feel lucky.
Stay well. I love your positive outlook. I do know that lots stress & worry is never good for the immune system so I appreciate how you see this.
What where ur symptoms
@@scentOfish22
Blurry vision (on and off)
Headaches
Bleeding gums and heavy bleeding when I’d have things removed at the dermatologist
Sweating
Dizziness
Burning feet if I’d stand in one place
Red face, palms
Itching (late symptom) after showers
Pain in left side (late symptom).. spleen is still enlarged
Increased anxiety
Concentration problems
Fatigue
Did you have to have a bone marrow biopsy? That is the only dread or fear that I have. I've read that it can be diagnosed without it, but I still don't want to do it. I am not symptomatic, but I do have elevated hemoglobin and iron levels. I go next week to do a follow-up CBC.
@@nunyabusiness3832
No.. I didn’t. The Jak2 mutation was indicated in my blood work. But I understand your fear.. I was afraid of it too.
@@nunyabusiness3832 how it went ? I just got tested for jak2 mutation .
I just got diagnosed with PV as yourself. I'm scare. Hope to get the right treatment since there is not cure, it is rare, it is generic, it is no inherent, but my run in family.
Thanks for sharing, I ve the same age to you. The blood test of my health checking show very bad, very high red blood cell (Hct 68%), high WBC and platelet on 11Jan2022. I'm waiting to submit to PV diagnostic approach on 18Jan2022.
Hct 68% !!?, Pls take care brother. Pls hydrate yourself as regularly as possible.
I am newly diagnosed Oct 2022 at 56 yrs old by routine physical ,was first diagnosed with ET until I had BMB . Numbers were very very high ,both white and red cells and platelets over a million . I am working with doctors ,I had weekly phlebotomy now every other week ,I need to loose weight I want to loose weight,but I don’t drink or smoke either .
❤this i have also since 2017 i check up to haematolgy or onkology always 3 months to control thanka 😊 life must go on even what happend folks regards!!
i go get my blood out every 2 weeks too n hopefully one day can go down to once a month
I have PV & thrombocytosis. I’m JAK2 gene positive. I’ve had it for about 7 yrs now. I’m currently taking jakafi & hydrea which have caused me to become anemic & low vitamin D. I currently take 12 different meds twice a day. I of course have the normal side effects but the worst in all of this is lack of energy!! Yes I work out but it’s still hard. I’m supposed to have a bone marrow transplant in Dec 2023 but was recently told they haven’t been able to find a match as of yet!
Bone marrow transplant for PV?
Your miracle will come, have faith!
Would be helpful to look into suppressed emotions....
What foods to eat?
I got diagnosed 2014 I am now 68, I take my medication hydroxyurea to control blood count and looking for another 20 to 30 years and never ever think about death it's part of life soon be three score and ten😇
I am also a polycythemia petient since 2019
Pls help me.msg me.
I got it too. I give blood every 6 weeks. 500 ml. I've gotten use to it. Good video. Stay healthy.
every six weeks ??
@@hemanthkumar2172 It was then. Now it's once a month and only if my hemoglobin is over 15.6 so far for the past two months my hemoglobin is under 15.6 so I haven't had any blood taken out. I guess that's a good thing.
@@headsicknation1365 hi there, so u gives blood to res cross or dr did procedure taking blood out and discarded? Thank u!
@@keithng5355 I get blood taken out and it's thrown away some how and not donated. I get about a pint taken out every 2 months now and only if my hemoglobin is 15.6 or higher. I get this done at a blood donation place as a prescription. I believe my polycythemia is getting better.
@@keithng5355 my understanding is that you cannot donate blood if you are diagnosed with pv .
Hey. I know how you feel. I was diagnosed when I was 21 years old. Been taking hydroxyurea for two years now. Stay strong!
Hello mate, i wanna asking u some question,you diagnosed pv but don't do Phlebotomy?
Sorry my english isn't good not really,but hope u understand what i mean
I was also diagnosed at 21
So how are you feeling taking the hydroxyurea and how many MM?
How are you doing now?
Hello! How are you today? I hope you're okay. If you were thinking about updating your fitness journey with us - I think we would all appreciate it, it's hard to be fit with PV. Take care ❤️
I recently found out I have polycythemia but my doctor believes it is caused by being on testosterone I experience nerve pain pins and needles and get a rash on my face that’s what made my doctor check my blood and over the past 3 years my red blood cells have been high and my hemoglobin elevated as well
My daughter's blood tests came back with the possibility of PV. We are redoing the blood tests to see if maybe just maybe the test was wrong. She is 5 years old
I saw my doctor today. I’m 22 and I’m getting my erythropoietin checked and possibly getting tested for PV because I have a lot of the symptoms and high haemoglobin and red blood cell count. I was quite worried what it would mean if I have it and your video has made me more hopeful that if I do have it I can manage it. Thank you for sharing your experience and what it means for you to have PV.
Don't worry it can be managed easily. Join a support group on Facebook.
How are you now?
@@RandomThoughts. no closer to any answers sadly :/ my doctors (GP) don’t seem to see the issue.
I saw a immunologist recently and they’ve told me all my concerns are valid and that I need to see a haematologist. At the moment they don’t know if it’s PV, anti-phospholipid syndrome or a autoimmune disease 😩
Am also 22 mahn started my phlebotomy but am really freaked out
Hi Bella! How are you now everything ok?!
I am waiting for my provider to get back with me on my High RBC, HGB, and HCT
How are you now??
I have PV and have to have phlebotomy every couple of weeks and take Eliquis
I was just diagnosed with PV and I went in because I was so tired all the time and now I know why. The phlebotomy helps with symtoms but I can feel when I need another one usually 2 weeks. I hope I can get to better levels so I feel better. Wishing you the best!
How old were you when you were diagnosed?
@@AlexXBT97 I just turned 50. I was just diagnosed 4 weeks ago.
@@bexxs2245 Hope you are doing well. I am 24 and got a blood test result with high hematocrit. I am worried
@@AlexXBT97 I had high hemocrit and hemoglobin as well as high Ferritin. It took them awhile to diagnose me. Hope it turns out better for you. Your so young. I hope that helps you being young and able to get yourself on a good routine to control it. Best wishes. 💕🙏
@@bexxs2245 hi, I have high hemoglobin, hemacratic and ferretin, think the same as u. How is your test going do far? I'm so worry
Hi, can you please advise on whether you can take supplements like creatine, proteins etc…??? Or are these a risk for getting a clot ??
Hou to control this policythemia vera I got this desease
I'm 27 and my GP has sent me to a hematologist because of my high red and white blood cells, I also have high hemoglobin and hematocrit but my iron is actually low
I'm waiting for them to get ahold of me for more testing too.
So whats your diagnosis now?
How are you now?
As a veterinary medicine,It is eritropoietin which have RBC increased. But if you have PV, your body works to decrease because of high level RBC. So, Generally EPO value of someone with advenced PV can be so low level as 1-2. And my level was 7,1. But this test isnt enough on the purpose of diagnosing. My HGB value has been changing 16,7-18,1(but generally 17,4 I think) for 4 years. And My Jak2 test was negatif but I hadnt doctors do bone marrow test yet. We will see what my doctor will say. I think he wont because of age 26 and HGB value. If I hadnt told that I want to make Jak2 , my doctor wouldnt have confirmed that . Unfortunatelly, you have to be a doctor on your own.