I have Polycythemia Vera and I have a World Authority Doctor at Johns Hopkins Hospital in Maryland. To avoid clotting, stroke and heart attack you must get your blood checked regularly. This speaker just mentioned my doctors name who is Dr. Spivak. I was diagnosed 2/26/02 in my home town which is 5 hours south of Maryland. The safest levels are a Hemoglobin of a 12 but not over and a HCT of a 36. Focus is mainly on your Hemoglobin. If your Hemoglobin rises above a 12 then a pint of blood needs to drawn off you. Because we have a high platelet count we have to keep our HGB and HCT low. According to this speaker it seems that things have changed so it maybe time for me to go back to Johns Hopkins and have a visit with my World Authority Doctor because this man tells my Hematologist here at home how I'm to be treated.

Wow I can see how much work it is to keep HGB that low just to counteract the amount of platelets.

learning much

I have PV since 2011 at the same time I have liposarcoma. Are these two health problems related with each other? I just had my 3rd surgery of liposarcoma very recently. If there are available studies on these two health issues, i am willing to participate. Thanks

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

@nikhilanand3178

Жыл бұрын

@justina unkgwu can you please help others by sharing the recovery. Thanks in advance

just started researching this for my wife......HELP?????

@gloriaalviani3657

3 жыл бұрын

How is your wife doing? My best advice is to find an MPN specialist....DO NOT DEPEND ON A DOCTOR THAT IS NOT EXPERIENCED IN THIS AREA. I stated in my comment (i think lol) that i read that you should ask your doctor how many MPN patience does he care over..... if he does not care for 50-500 he is not a specialist..... I SEND YOU MY STRENGTH AND PRAYERS and pray ALL IS WELL!!!!

@Ron-me2rn

3 жыл бұрын

@@gloriaalviani3657 What is MPN? Thank you for the information and thank you for your prayers.

@jseven7096

2 жыл бұрын

@@gloriaalviani3657 I agree. I Give the same advice to everyone now. Always go to a specialist, my primary saw my high blood counts and didn't say a word to me for years.

If HCT is a value derived from RCB and MCV, what are the safe, acceptable ranges of values for both RCB and MCV? And how to keep RCB and MCV within those acceptable ranges?

@brandorabanes1541

5 жыл бұрын

How can we manage an enlarge spleen? Please help me

@luvjesuslee2033

5 жыл бұрын

@@brandorabanes1541 Great Question

@venomx4093

2 ай бұрын

​​@@brandorabanes1541The drug Jakafi or the removal of the spleen or low dose radiation are the only 3 options I can think of.

@venomx4093

2 ай бұрын

​@@brandorabanes1541AVOID these foods if your spleen is enlarged. Refined carbohydrates, such as pastries and white breads. Fried foods. Sugary beverages, such as sodas. Red meat, such as burgers and steak. Processed meat, such as hot dogs and sausages. Shortening, lard, and margarine.

Mine is platelets why do they keep going up they are 565

@badkitty1159

4 жыл бұрын

Its thrombocythemia basically the same thing as PCV but with platelets that are deformed and dont work well, because it too switches to WBCs and RBCs sometimes. Thats what I have but have yet to be treated for it since I moved right after initial diagnosis and changed MDs, the new one doesnt agree with the old one and refuses to do more testing o.O so I have a 600,000 platelet count and now the WBCs are going up too and he is like, "eh lets watch it" Im doctor shopping now. Ugh! Get all the info you can on it, you will feel better and be ready to face bad doctors if you get one. Know the facts. Good luck Jean :)

@jseven7096

2 жыл бұрын

@@badkitty1159 I hope you found a better Dr and you're doing ok these days. I noticed my rbc and wbc counts were high 2 years ago and I asked my primary about it and he said " Ahhh you're fine, don't worry about it". I got hurt at work a year ago and recently had knee surgery and the next couple of days I had all the signs of Blood Clotting in that leg. So I checked myself into a Hospital and they were the ones who told me. Now I go to Sloan Kettering blood and Oncology and they monitor my levels and when its high counts they take 500 cc's ( around 16 ounces) outa me which is basically on a weekly basis. My suggestion is ALWAYS go to a specialist. Primary Dr's don't know shit.

@badkitty1159

2 жыл бұрын

@@jseven7096 Thank you so much JSEVEN! Im happy you found a good solution. I did find a new doctor and will be seeing a hematologist soon. Thank goodness! You were so kind to message me thanks again.

Garbage treatments. No real answers. So sad