Newly diagnosed with pv

[Carolyn77]

Hi, I'm carolyn,52 yrs,and was diagnosed by chance a week before Christmas. My eye consult ordered some blood tests and within 2 hours I had been contacted by my gp, diagnosed and was booked in for urgent appt with the haem clinic. My haemoglobin was 20 and my haematocrit 67. Once phlebotomy gets my blood normal I am commencing hydroxycarbamide. The thing is I am just terribly exhausted.and although my blood picture is almost normal now ,I get this horrible head fog. Can anyone give me some advice or reassurance about this. I've read quite alot on this fantastic site . Need help.

[Roger41]

Welcome to this web site..

The head fog you are currently experiencing is quiet common.

You are having to process so much unusual information all at once that your thinking capacity is self protecting.

As you have been reading on this site sharing your symptoms will in fact help you to realise your part of a unique group.

I found that if I started a diary it helped me and was useful to take this with me to each of my appointments.

The best piece of advice which was useful to me and mine, was to concentrate on keeping myself fit.

I bought a salt lamp to help with mood swings, I also had a word with my beauty therapist and she gave some essentials oils to apply on my pulse points for sleeping which I found soothing.

I also try and keep hydrated.

I hope this is what you are looking for.

Regards

[JohnSC]

Hi Carolyn,

Your experience sounds very familiar to me. I was diagnosed last Aug with high Haematocrit, and put on a quite aggressive schedule of weekly phlebotomies to get it under control. During this time I really suffered from head fog and fatigue like yourself, but when the phlebotomies became less frequent the head fog and fatigue have largely disappeared.

I found that resting, staying hydrated and keeping to a low iron Mediterranean diet helped, I also explained the situation to my employer who was very helpful and allowed me time off when I felt fatigued.

I hope this helps and that you soon feel better.

John

[Carolyn77 in reply to JohnSC]

Thankyou john , i realise now that the weekly phlebotomies were directly exacerbating the head fog and fatigue. These symptoms are much less now, although still present. I had not expected the phlebotomies to have such an adverse effect on me. It was quite a shock. Thankyou for your advice which really helped, Carolyn.

[Ebot]

Hi Carolyn. Welcome (although you’d probably rather not be here!). Yep, fatigue and head fog goes with the territory. I find I can usually tell when my haematocrit levels are on the rise (though thankfully monitored so have never got as high as yours). I think most people will agree that once you get the blood counts under control you will start to feel better. Added to that the time of diagnosis (or subsequent changes in diagnosis / treatment) can be enormously unsettling and stressful and this in itself can be exhausting and brain curdling. Be nice to yourself. And as others have mentioned, drink loads of water, eat healthily and try to keep moving through some regular exercise. Wishing you all the best.

[Loubprv Volunteer]

Hi Carolyn.

You poor old love, you’re exactly where I was 8 years ago.

I was diagnosed at 54 with a haematocrit of 74, exhausted, horrible thick foggy head, ( the most ghastly itch called aquagenic pruritis , do you have that?) now nearly 64, I’m absolutely FINE and have been for 7 years nearly.

I climb fells, run a holiday property, cook supper for 12 you name it and now buddy 23 lovely people just like you, newly diagnosed, and wondering what the hell is going on!

You will get better I promise, but it may take a few months, so stick with it.

You sound as though you have a haematologist who knows what he’s doing.

Venesection will work, although I was put on hydroxicarbamide and venesection straight away, you could ask why you are not doing the same?

Learn and read as much as you can about PV and mpn’s in general, the more knowledge you have, the more your haemo will listen to you.

Where do you live?

Self help.

Get out and walk, briskly, as fast as you can, for an hour a day. The more you feel like not doing that, the more you NEED to do it. Gets the old blood circulating, which at the moment is like the slow boat to China! Really important. Walk, fast, please.

Drink 2.5 to 3 litres of water every 24 hours. Well spaced out. You might pee for England to start with, but will keep your blood hydrated. Put up a notice if you can’t remember. Drink more water. I have a .75 litre glass that I fill 4 times a day, and take one to bed with me.

If you eat ready made foods, smoke, or drink copiously read on:

Eat healthily. Do not eat processed, ready made or fast foods. They all cause inflammation in the body which is what we don’t need.

Lots of research being done in the US re rubbish food and health at the moment.

Don’t smoke ( you probs ly don’t or have been told not to)

Cut down on alcohol ( I don’t drink at all) and cut down or eliminate caffeine. That includes decaff rubbish which also causes inflammation.

I drink rooibos ( naturally caffeine free) fruit and peppermint, and ginger tea.

Please feel to phone me if you wish, or email Maz, via the Mpn website to ask for a buddy.

My number is 015394 45612.

You’ll be fine, honestly, but it will take some input from you as well

Love

Louise

xx

[Carolyn77 in reply to Loubprv]

Thankyou so much for this fantastic advice. I have now commenced walking hard for an hour every other day.... am working up to daily! It seems bizarre that the exercise dispels the fatigue and head fog and goes against logic. but for me it is really working.Am also drinking over 3 litres of water a day as advised by everyone, including my haemo. I already eat healthily but am overweight and will deal with that soon. I have now had 6 venesections and my haemaglobin is below 15 and my haematocrit below 45 so my haemotologist is giving me a month off with fortnightly blood teats to see where im at, results to be checked by the haematology nurses. he will then see me and make a plan?dose me correctly with hydrea and or give me another venesection,, already booked provisionally. Im happy with this . It seems a careful and thoughtful approach. Thankyou everyone so much. It really helps to have your support,Carolyn. oops im 62 not 52. (blame the head fog)

[Loubprv Volunteer in reply to Carolyn77]

Hi Carolyn!

So glad it’s helped! You’ll soon be winging your way to feeling a zillion times better. Maybe you might even attend an Mpn forum one of these days?

Keep an eye on the mpnvoice.org.uk website to see when they’re being held.

Love

Louise

[Fionnuaghla]

Hi Carolyn,

Welcome to our very exclusive club. You have already been given the very important advice re hydration, diet and exercise. Processing a new diagnosis is really tough and consequently emotionally exhausting. We have a tendency to recognize physical tiredness and usually know the reasons. However emotional tiredness is draining, exhausting and so confusing. I was diagnosed just before Christmas two years ago and can honestly say for a few weeks my head was a cabbage trying to take it all in. I would suggest, if possible, to rest also and maybe for periods lose yourself in whatever gives you pleasure, maybe reading, painting yoga or whatever is your thing. You have had a shock and sometimes your mind, body and spirit just needs to stop and take a rest from processing all of the information. Please take heart from all of the lovely supportive people on this wonderful forum. I sincerely wish you well. xx

[Indigo42916]

Greetings Carolyn,

Great advice here. I would add you might find you need more sleep. It took me awhile to accept I do better now with 9 or 10 hours of sleep.

Once I accepted the "new normal" it made a huge difference with symptoms.

Take care.

[Carolyn77 in reply to Indigo42916]

Thankyou so much indigo 42916, I have started going to bed earlier and it makes a huge difference, I just go to bed early and relax and read instead of pottering around or watching TV. Its hard to change lifestyle patterns. I live with a night owl so its not very sociable to disappear early every evening. makes me feel a bit sad. but its a compromise that has to be made.its funny how the little things have so much impact.

[Indigo42916]

Good to hear Carolyn, finding ways to manage and feel better is the key to dealing with the new normal. Little things do matter.

Thanks for the reply, take good care!