Improvement with diet: I have PV diagnosed nearly... - MPN Voice

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Improvement with diet

lucieboo profile image
7 Replies

I have PV diagnosed nearly 7 years ago, treated with Hydrea and venesection, plus low-dose aspirin. I was diagnosed late last year with reflux (stomach to oesophagus) and since then have modified my diet: no meat, plenty of fruit and vegetables, use olive oil, eat fish, oily by preference, not too much carbs espec. sugar, and I don't eat an evening meal, just a light teatime snack. What a difference! Lost the breathlessness and blood measures stable including hematocrit 40-41% and no need for venesection, my hematologist says my treatment is working. And now I can take more exercise without feeling tired. Remarkable!

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lucieboo profile image
lucieboo
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Poppy6060 profile image
Poppy6060

Hi i have had PV for 18 months I am learning so much on this site I do need to look at my diet seems it really helps I do like a biscuit and yogurt good news u feel good I really need to start to help my self thanks so much to you all best wishes poppy 6060

lucieboo profile image
lucieboo in reply to Poppy6060

Bifidus type yoghurt is good. Red and black berries, you can make smoothies. Porridge. And good food, quality not quantity. Limit alcohol intake to occasional treat, it is not a food and adds calories. Thanks and good luck!

MPort profile image
MPort

Well done lucieboo. I am trying to work up the energy and focus to do what you are doing. What motivated you to start?

Mairead

lucieboo profile image
lucieboo in reply to MPort

It's one of those strange things. I developed a persistent dry cough, googled it, thought it could be reflux (GERD), so I booked an appointment with the GI guy, tube down the throat, yes indeed! Followed all the guidelines plus added meat-free and no alcohol, cough went, so did the breathlessness. Also lost some weight, became motivated to do exercise (Zumba, pilates and gentle cycling, plus my usual swimming and dog walking), and that was it! Motivation is all....

MichaelS profile image
MichaelS

You seem to have overcome your reflux problems, so good for you. I had PV for something like 30 years and quite early on I had acid in the stomach and reflux problems. I often felt queasy if I passed a hot food stall! I had tubes down me and up me and then looking at the internet one day I found out that PV creates histamine, which creates acid, so I went to my GP armed with a print out of the article and was put on Omeprazole, which completely stopped the acid problems. Next time I had my visit to the blood doctors I suggested they tell the GPs of patients with these MPNs. That was when I was on Hydroxy. I now have MF and am on Jakavi which is working very well. I have just been on a motorcycle tour to Florence and back to Bristol in 13 days, and I am 70 in August. These problems can usually be dealt with. Best wishes to everyone Michael S

lucieboo profile image
lucieboo in reply to MichaelS

Thank you Michael, I do agree! I read the same, that it is not just aspirin the culprit for stomach problems. You seem to have been doing brilliantly and very good luck to you, another example of positive attitude.

MichaelS profile image
MichaelS

Thank you Lucieboo and I wish you well too. A positive attitude certainly helps and we must get on with life as well as we can.

Sorry for the delay but I only returned from my motorcycle holiday to Florence a couple Fridays ago and I am still catching up with all the emails and reading!

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