New diagnosis. PV

[Chelle_]

Hi I'm recently diagnosed with PV. I have Portal Vein Thrombosis too along with Cirrhosis of the liver. I only popped to the docs as I though I had a bit of flu. Never mind....I was admitted to hospital 6 months ago to the day and life has completely changed. Prior to to October 13 I was very active running regular 10k's and half marathons. I was to get back into fitness big am struggling with fatigue....anyone have any advice?

[malachy]

I am so sorry you have had such a difficult 6 month and about your diagnosis. I understand about the transition you are experiencing and my advice is only very basic. Eat well, try to sleep well and as soon as you are ready excercise moderately every day if you can. It has taken me 18 months to heed my own advice however, as an MPN diagnosis is difficult for us to come to terms. It is also difficult for our family/friends to understand, as a lot of the time we may look well even though we feel awful. There is a lot of support on this forum. Good luck x

[Chelle_ in reply to malachy]

Thank you malachy. Your right at times I look really well and feel like rubbish. I get the good days and bad days the same as everyone else. I appreciate your advice. I packed my gym kit this morning and plan to see how I feel this afternoon, I am determined to something though!! Have a good day, and thanks again! X

[Boss1]

Hi there,

I was diagnosed with PV last 8 months ago. I changed my diet and life style immediately with the advice of a medical herbalist. Although I had symptoms before and just after diagnosis, they have all gone apart from tingling and itching after bathing in the morning (not in the evening!). I may be very lucky put I'm absolutely certain that what I'm doing has a large effect. I regular exercise (every day bike ride around my town..nothing too strenuous). I keep hydrated, I've cut out red meat and most industrialised/processed food. I max up on the vegetables, fish, nuts, green tea, good quality poultry, cut down on dairy especially hard cheeses. Cut down on carbs. A little red wine and dark chocolate allowed!!! My suppliments are: fish oils, vitamin D3, tumeric, olive leaf. It's an anti inflammatory diet and I really enjoy it. I think the regular exercise is the most crucial. I'm on 75mg Aspirin. I refused venesections initially as my counts were going down. They rose a little after Christmas (I lapsed a bit). I agreed to 2 and now they don't need to do any as the count has gone down even further a month later. I wish conventional medicine would not see so called 'alternatives' as wacky still. The doctors and nurses seem surprised and my haemotologist now thinks what I'm doing could be having an effect. Hope this helps you and anyone out there.

[Twinkly]

You look amazing I love that smile ,,my advice is get on a trial if its offered to you ,I did and I'm doing so well. Try to work with the doctors. But also read the book the .p.h.diet .its easy to get at amazon ..really cheap ,, it's a godsend for us with PV..and any cancer problems ,,it teaches you how to starve those cells. So they don't grow and multiply ,,my advice to you is get a buddy and chat for knowledgable support as I did .it is a comfort to know my mate is there for me ,,she understands cos she has all the same problems as me,been there done that !! Sending you love ,,twinkly. Xx

[karteeka]

hi chelle, im sorry to hear about your diagnosis and what appears to be multiple issues. i hope you are seeing a specialist in relation to your liver problems.. the portal vein thrombosis can be a consequence of the cirrhosis and prv. - the prv is minor compared to the other 2 and as to the advice re red wine- alcohol is a definate no no. im sure you are seeing professionals - heed their advice as there is no quick fix. karteeka

[Chelle_]

Guys, thanks so much or your advice. I certainly don't drink alcohol. I havent really changed my diet, I shall invest in that book. I am also on Warfain and Inter-A. I am doing ok, I am serving in the RN at the moment, they have been tremendous and an amazing support. I do have a buddy but they havent 'chatted' to me or emailed, etc...I understand we all have off days so I imagine thats whats happened. I am pleased I have found this site, I don't feel alone anymore.

xx

[Mazcd Partner MPNVoice]

Hi Chelle-PV, I have sent you a message re the buddy contact, Maz

[Twinkly]

That maz is so fast ,just like a rat up a drainpipe!! She will fix you up with a good buddy ,mine lives in Cumbria ,so I hear about the lakes ,She takes me out of myself ,cheers me up when I'm sad ,that's not so often now my hospital team have got me stable ,I had venesection every 4 weeks at the start ,but the good food healthy eating ,no dairy ,lots of veg and broccoli every day ,juices and water to wash the little buggers out of my system .now I'm strong to fight back .as you will be too..the book ..The PH.Miracle diet is by Dr Robert.O.Young. & Shelly Redford Young ,his wife,.its not so difficult to understand,anything that grows you can recognise is o.k..Not Mushrooms.tho,( fungus) .also seafood are rubbish eaters ,don't you eat them ,but good fish is o.k.eat fruit and regular snax every 3 hours ,to get strong ,use honey ,bees are workers ,,keep twinkling xx

[LouisePRV Volunteer]

Hi,

Well, you poor little sausage - there's one thing in your favour - you're still gorgeous!

You'll find we all have different ideas re coping with MPN's, so you'll have to weigh them all up and decide.

I visited the Penny Brohn Cancer care clinic in Bristol and heeded their advice re diet, (google penny Brohn cancer care ) ie totally organic.

Their way of thinking is, our bodies have enough to cope with re the cancer itself, as well as various drugs etc, so why add the extra burden of food and drink laden with preservatives, additives, chemicals, hormones and antibiotics. ( you have the extra burden of cirrhosis of the liver - an organ which sifts all the rubbish out of our bodies)

DO NOT EVEN touch non organic chicken or non organic salmon - both are sheer poison. ( there must be a reason why my little dog will only eat organic chicken!)

I know this sounds whacky so you'll have to make your own mind up.....

However if you do decide to give it a try, you'll need at least 6 weeks and not a few days to see any difference.

I also drink 3 litres of water every 24 hours ( this will also flush out the old liver!) have at least 10 hours in bed - not all sleep but rest, after which I find I can go like a train all day, and walk at least an hour and a half a day.

However, that's my routine, it might not work for you.....not sure where you live, but I strongly suggest you take at least one member of your family and a close friend to an MPN forum - London, Cambridge, Manchester see mpdvocie.org.uk. For more info.

Also look at pateintpower.info

Both superb support websites.

My husband's didn't really realise how serious an MPN is until we attended our first forum 4 years ago. It really helped him to understand what we have to put up with, and why we always seem to look brill but don't feel so pukka.

Meanwhile, if you would like to contact me directly I will be happy to send info re Penny Brohn that isn't on the website.

Chin up, all will be well, and there are a lot of understanding folk out here in the same boat. Louise x

[e-mail]

[Chelle_]

I really didnt think about changing my diet or daily routine that much. I just wanted to get back to running my half marathons. Running was my form of coping with every day issues before I was disagnosed, so naturally thats what I'd like to do again. I think I have a mind over matter attitude. I will go back to the gym today and I will do my first run in 6 months. I need it! lol. I am off to one of the forums in Southampton and think I will take a member of my family, if for no other reason than support. Your helps advice and assistance is so very very appreciated. I have actually cried this morning because I don't feel as though I am in a mine field alone!

Louise I shall email you.

Thank you

[harleydavidson]

Hi Chelle. You sound really strong and positive which is a great thing. When I got home from work yesterday I did 4 hours of gardening and wanted to give up several times but made myself carry on. I was so chuffed with myself when I got to the end, slept well too. we can do most things if we put our heart and soul into them. We all have good and bad days, I just listen to my body.Good luck with run. Mel x

[Chelle_]

I have a great support network around me and believe them to be the reason I am so positive. I think sitting wallowing will make me feel worse and I really don't want people feeling sorry for me, no matter how bad I feel.

On the plus side, I went to the gym, aching a bit now and no guarantee I will be moving tomorrow but we're deal with that then! Lol. I am overwhelmed by what you guys have had to say today. Thank you. Chelle xx

[Akeegans]

Hi there I also suffered from portal vein thrombosis 6 years ago , caused by PV which also led to cirrhosis of my liver... Like yourself I'm on warfarin as well as interferon. I recently switched to a pegulated interferon (slow release) which has helped with many of the side effects of the interferon. I agree with others who have posted, that a good diet and plenty of water is key ... I also run 3-4 times a week and also do vigorous boxing training twice a week, this is the only thing that seems to combat my fatigue .. It is something you have to build up to, and you have to have discipline and determination to push yourself to keep it up....but it's improved my quality of life....Prior to doing this I would spend my weekends on the sofa with no energy to move... I appreciate lighter exercise may be better for some, but it doesn't seem to touch my fatigue .Your life changes for sure, but It does get easier ...so hang in there and keep a positive mind ... That also helps me!

[Chelle_]

Thank you for that. It's always nice to know there are other people in the same boat. I used to box for the Navy and gave it up

Once admitted into hospital. It's nice knowing that there maybe an option for me to go back. Running was my release. I feel good today so I am going to keep hold of that when I'm feeling rubbish and do stuff even when I don't want to. Thank you all

So much for your advice. Today really has been overwhelming! X

[Nickyb57]

Hi Chelle,

I have a similar story, 5 years ago I went into hospital as an emergency, as far as I was concerned before that I was in perfect health! Anyway it turned out the I had a portal vein thrombosis which had blocked the portal and splenic veins causing necrosis of the jujunum and my spleen had grown to the size of a rugby ball. My spleen was removed together with 2' of intestine. After a month in hospital I was allowed home and had about 12 months off work altogether.

I've gone back to my keep fit class and ride horses. I also try To drink at least 2 litres of water a day.

Positive thinking is so important, but clearly you are a very positive person. All the best Nicky