I also have PV. I was diagnosed in 2002. I truly appreciate you taking the time to make this video. Thank you. ♥

@hoimantidas3866

4 жыл бұрын

Hello..Have u cure from PV? .. My husband attack in PV last year.. Now how can cure this PV.

@jrbailey2652

3 жыл бұрын

I have pv

I am 60.. diagnosed a week ago. I was experiencing symptoms but just chalked it up to getting older. A dentist strongly suggested I see a GP for blood work when he saw how heavily my gums were bleeding. I called that dentist to thank him.. because I’d been feeling sick for a long time. The GP called with my results and referred me within a few days to a Hematologist. I had my first phlebotomy and was given Hydroxyurea. I also am taking a baby aspirin every morning. I see my hematologist tomorrow.. although still in shock I feel with managed care.. I can live a long life. 🙏. Hugs everyone.

I have PV and I really appreciated this video. Thanks so much!

Just diagnosed yesterday. I'm on the prowl for info. Thank you for this information.

@Mariekr49

6 жыл бұрын

Aria Wood you seem young like me and I think I might have this. Do u mind asking your age? I heard it’s usually in people above 60 but I have symptoms to this disease. I want to get it checked out

@entrustind

6 жыл бұрын

Aria Wood what is your Hemoglobin and hematocrit label ? Is WBC also increased at the time of diagnosis ?

@venomx4093

2 ай бұрын

​​@@Mariekr49I know 2 people that are in their 30s and 40s with it. I'm 50 and my doctor is highly suspecting I have it as well based on symptoms and blood work. My Hematocrit and Hemoglobin has been flagged high for the last 9 years, but only by 0.1%. My hemo is 17.2. Range is 13.2- 17.1. My hema is 50.1. Range 38.5- 50.0. My different white blood cells have been all over the place for 3 years from elevated to low to normal. I get kidney stones often which goes in line with my wbc numbers. I'm also hypothyroid, so my symptoms overlap, making it hard to figure out. I have very active abdominal sounds that sounds like a war going on that follows any gluten or dairy. I'm about 98% gluten and dairy free. I know celiac and IBD or IBS can raise the hemo and hema as well. I am a smoker too. He told me to donate blood and see if I feel better. I haven't done that yet.

Ty for posting . I have two comments. First your complexion doesnt exhibit the usual redness so good for you. Secondly , some like myself cant walk to the corner store let alone 200 mile treks. In any case a worthwhile video .

i was 1year diagnosed this desease, this will be all the time to plebhotomy and consumption low dosage aspirin

Thank you. I was diagnosed with PV in September right before my 63rd birthday. I'm amazed you can trek like that. I can't even wash the dishes without having to sit down to rest every few minutes. . Good for you, being so proactive. I'm undergoing a phlebotomy once a month. My blood was so thick the first time, it took them 90 minutes to draw out 200 mls of blood. Since being told to drink more water and do the 81 mg. aspirin each day, it's much easier to draw the blood. I'm not feeling a whole lot better tho. I'm under the care of an oncologist but I wonder if she knows much about PV.

@joaningram594

3 жыл бұрын

Is it unusual for a 32 yr old female to have PV?

@chucktrivette5723

Жыл бұрын

I've been living with this disease myself for 8 yrs now. We've almost given up on the medical system of today and I starting doing my own phlebotomies at home. Praying for you and anyone else living through hard times 🙏

@venomx4093

2 ай бұрын

​@@chucktrivette5723How are you doing phlebotomies at home?

I just found out yesterday I have it. So thank you for your Video.

I’ve just turned 31, and this morning I was diagnosed with PV. Thanks for the video!

@manobanismo

3 жыл бұрын

hi may i know how high your hematocrit was when diagnosed?

I am 77 and one year ago the blood showed I had high platelets with bio marker jak Trombocytocis and start taking 500mg daily of HYdrea and 81mg Aspirin, D3 vitamin. My platelets came down to normal range but sometimes I feel tired. I appreciate you are sharing this information.

i am 33 and diagnosed with PV and i am fit athlete with no symptoms at all. no symptoms from the long lists available on internet

I was diagnosed two months after my 67th birthday. My PCP suggested I donate blood on a regular basis to reduce my blood count before prescribing medication.

I was just diagnosed with PV last week at the age of 62. I'm still in the shock phase. I had my first phlebotomy last week and am beginning a regimen of hydroxyurea. I am starved for information and others with this rare cancer.

@yadbendradubey2551

2 жыл бұрын

God Bless You

I have this disease too. It was a complete shock to hear that I had a blood cancer at the age of 38. In my picture my face is red becaue when the picture was taken I didn't realize that I had the disease. I lost weight and was dizzy and had ringing in my ears too.

@entrustind

6 жыл бұрын

Paul Mitchell what is ur age now ? what is your Hemoglobin and hematocrit label ? Is WBC also increased at the time of diagnosis ?

@kathrynanevi

3 жыл бұрын

I do too. I am a year into this. 38 now. I feel drained alot of the time. It's so hard to explain to people.

How many years you ve been diagnosed having PV ? what is your Hemoglobin and hematocrit label ? Is WBC also increased at the time of diagnosis ?

@teenwolf9957

4 жыл бұрын

Entrust Ind what is yours.

I've had it for a little over a year. Had a terrible doctor at first that kept raising my number before I got a phlebotomy. Managed to get another doctor and he was so livid he called the first doctor and was screaming at him he needed to quit practicing! My number was 59 and he still wasn't giving me treatments. They had to give me weey phlebotomys for 6 weeks to finally het my number to 45. The main thing is family calling me lazy because I have no energy at all.

@daniellel.overysmania3811

3 жыл бұрын

My abusive husband calls me lazy too and I'm doing chemo plus I have erythromyalgia another rare horrifyingly painful disease along with quite a few more significant diseases/disorders. It is so heart breaking! Have tried to leave several times my daughter and I stayed at the shelter a while. He controls EVERYTHING so I have no access to finances and we slept in the car many times but when it's a severe snow storm and you run out if gas so no heat with my daughter..... Can anyone help me?

@JohnSmith-wth

3 жыл бұрын

@@daniellel.overysmania3811 there are organizations that can help. Not trying to be funny but head south. Barely surviving myself.

@stella-vu8vh

3 жыл бұрын

Danielle L. O'Very-Smania TANF

I was diagnosed in 2003, at age 46. My RBC was very high, over 200 range. The only symptoms I had was a severe constipation and pain in finger joint, all gone after phlebotomy therapy. I started low aspirin dosage, and I was prescribed hydroxyurea in 2018. I had a CT Scan in 2019, and it showed a dark spot, and that could have been a stroke dated back to the time when my RBC was too high.

@thegenisisacademy7454

3 жыл бұрын

Can u contact me on what is aop

@thegenisisacademy7454

3 жыл бұрын

8899816601

@Mason_000

2 жыл бұрын

I only have blurred and double vision among all the symptoms of pv, in my cbc report, my rbc, hgb and hct were high, so I'm scared i might have this condition

@yadbendradubey2551

2 жыл бұрын

@@AyazKhan05 Please Contact To Dr In Hematology Department

@yadbendradubey2551

2 жыл бұрын

Hello Sir How Are Your Your Desese Will be come I Prey To Good

i was diagnosed with this when I was 12

@theforgottendinosaur

7 жыл бұрын

im 27 now

@cynthialawsonneal7394

4 жыл бұрын

I was diagnosed about 15 years ago but had symptoms as a teen possibly younger. I'm 46 now

@hubbadouble8025

4 жыл бұрын

@@cynthialawsonneal7394 and how don you feel? Is your condition stable? How aboul life quality? A person I love may have this, he is only 22 and I'm very scared

@muhammadatifkhan6416

3 жыл бұрын

@theforgotten din.. Can i contact with through WhatsApp? plz. +92 3028326120

@Mason_000

2 жыл бұрын

@@hubbadouble8025 same I'm 21 and im scared

I'm really scared. I tried donating blood and they refused me after seeing my red blood count was high and my white blood cells were high. I'm freaked out cause never in my life did I think I would or could possibly have this disease. last year alone I declined medical insurance and will find out next week if I have This. I have a wide of two years and my family has been through so much and I don't know if they could take more bad news. I'm just genuinely scares to live with this disease that I will have no control in within time and more so my family..

@happybolden916

5 жыл бұрын

I'm 34 never been sick in my life so I know the feeling just have faith no matter what.

@crashmagnetmusic3035

3 жыл бұрын

You can go to a Hemotologist and they will take blood once a week.

@venomx4093

2 ай бұрын

Did you ever figure out why your blood counts were high?

My husband had just been diagnosed with this

@yadbendradubey2551

2 жыл бұрын

@@AyazKhan05 Please Mantain Hct under 45 & RBC 40

Thanks for this video !! I don't understand why are we raising money for those drug company who are already making billion dollars from drug. I think this support goes to family who have tough time that point. Some time patient can't work for long time and all family depends on him ..

@diannew6066

8 жыл бұрын

+R Dhillon Good point!

Did any of you have the itchy skin or rash after showers, or without? If so, how long did the itchiness last?

@JohnSmith-wth

4 жыл бұрын

I never had that but I have ungodly hot flashes. Just pour sweat. I have it all day not just at night. I tell people I have Manopause. Lol but it really is terrible. Have no energy. Find a good doctor! If they keep raising your number to get a phlebotomy run to another doctor!

@crashmagnetmusic3035

3 жыл бұрын

I did, also a feeling of electric shocks in my arms and legs.

@Suzy3223

2 жыл бұрын

Yes!! The itching.. more like pins and needles.. last around 2 hours after I showered. I found cooler showers and not rubbing my skin with a towel.. helped.

@ahmuqasim7540

2 жыл бұрын

I did, but not that much since I started my treatment.

@Grey3Vox

2 жыл бұрын

@@Suzy3223 The itching I've had for years, like walking through a field of nettles - hard to get it across to people that itching itself, even without pain, can be so distracting. I mentioned to my doctor "it's worse at night" and she replied everything is worse at night - now using products made to treat eczema: Marie's Original Soap I wet a bit on one edge and apply as if it's a roll-on, and also a 5% lidocaine gel, Advanced Numb, which doesn't show on my skin. It feels as though, each night, I went through moving day, I'm so weak and tired, and my midday "window" of relative normalcy seems to be shrinking.

INCREASED ERYTHROCYTES, HEMATOCRIT, INCREASED LEUCOCYTES IN THE BONE MARROW, EXCESSIVE PRODUCTION OF PLATELETS

PHLEBOTOMY AND ANTICOAGULANTS ARE IMPORTANT FOR TREATMENT.

Source of Inspiration - www.dnaindia.com/lifestyle/video-this-man-with-a-92-kg-leg-is-raising-funds-for-a-wheelchair-2181041

Thank you so much Dr Dagba for curing me of polycythemia vera🙏🏼😭🙏🏼

I am 30 i was diagnose with Pv november 2022 i am so dizzy of lately pleaee give me advise