Pvr

[Ursy1955]

Hubby diagnosed 14 months ago with PV.on aspirin and hydrea.never in good form and has given up on all the ings we used to do.I work full time and he says I should be at home with my sick husband.he is 69 .I am doing my best to cope and never stop reading up on this disorder.am I been selfish. I woul like to find out about people and how they are coping mentally and physically. I could go on and on.do most people continue to enjoy life .I know you can live for decades with this.anyone out there who can say theyhave pv for 15 years or so and now in their 80s.and had a good life

[revfee]

Hello, I'm sorry that your husband us having a difficult time with his PV, and how that is impacting on you. It must be difficult for you both.

Could you get to a Forum or the Day at Guys, it may help you both to meet with other people, or maybe ask Maz for a buddy?

It is a shock to be diagnosed with a serious and uncurable condition and takes most of us time to adjust, do you think he may be depressed? Maybe a visit to his GP may help.

I am 58 and have had PV for 30 years, I work full time and live alone and whilst I don't always feel top notch I certainly get lots of pleasure from life. But I am fortunate in that apart from fatigue I don't have major symptoms nor side effects from the Hydrea.

There is a useful life after diagnosis. I do hope things pick up for your husband.

best wishes, Fee

[Aime]

Hi Ursy, sorry to hear of your hubby's diagnosis which has been a devastating event for both of you. Please take comfort from the fact a lot of people on this forum have had PV for years and are still here.

You are both still on the merry go round of the early days and it takes a while for both of you to come to terms with your hubby's illness. You both need to find out as much as you can - MPN Voice website as well as this forum.

If you stay in the UK Maz, our editor and team organise forums up and down the country (list on website. At these forums there is a group for families to join where they can meet others in the same boat. My hubby found this very helpful and stopped burying his head in the sand.

You don't sound to me like you are being selfish, you are working to bring money in and you need some "you" time. Your hubby needs to make an effort too by drinking plenty of fluids, eating healthy and trying his best to exercise as much as he can. Perhaps a trip to your GP together may help in case he is depressed and a bit lost now that he's not working.

Hope this helps, remember you and your hubby are not alone. Kindest regards Aime xx😺

[JSKly]

Hello Ursy

I've had PVR for nearly 20 years and am now 81. It is a shock for sure when you are first diagnosed but it is a disorder that allows us to live normally and certainly enjoy our lives. HU is a benign drug and I was on it for over 12 years.

The patient may from time to time feel fatigue but thousands of us do. A bit of exercise makes me feel better.

No reason to give up. That's not a healthy option. There may be some ups and downs but that's life with or without PV. Keep life normal.

I trained for a new career 9 years after I was diagnosed and went on to serve in that field for several years. I don't see myself as sick but as having an interesting condition.

Cheri

[piggie50 in reply to JSKly]

What a lovely uplifting post Cheri! Good on you, you are obviously a glass half full lady!

Happy Sunday

Judy

[Ursy1955 in reply to JSKly]

Thank you all for all those positive replies.we live in Dublin and he attends one of the best specialists in James hospital. There are no forums in Dublin as far as I know.he attends the hospital every 3 months and his bloods are excellent every time .he won't allow me accompany him.he is afraid of it changing .he reminds me that he is a cancer sufferer and won't live to be 80. I would love to show him all those replies.

[piggie50]

Hi Ursy1955,

I hope you can show your husband all these replies. He will probably die of something other than his PV! He is wasting his life worrying about this, he has a brilliant consultant and hospital to support him. I don't know either of you, but do you think maybe he wants the sympathy? Do you think he may need to talk to someone about these feelings? You are doing the right thing in finding out all you can about PV. Keep your chin up, ask Maz for some leaflets and leave them about the place to let him know that you are really informed about things and maybe you can just drop snippets of information into the conversation. Let him know that PV does not need to be a death sentence. I am now 63 and have had PV for 12 years, on Hydroxy for the last 4 years. I worked with it full time until 18 months ago when I decided I wanted to retire early to spend more time with my children and grandchildren. I suppose I just had to get on with it with no one at home to pamper me. I lost my husband to lung cancer 1 year after my diagnosis. He was aged 68 so no chance of getting anywhere near 80.

Keep reading and learning and try and get your husband to wake up and smell the roses. ( sorry if that sounds harsh, I don't mean it to be)

My very best wishes to you, I hope you can find some way through this.

Judy xx

[Ursy1955 in reply to piggie50]

Thank you Judy you are a lovely person.I will keep in touch

[Mazcd Partner MPNVoice]

Hi Ursy, I am sorry to hear that your husband is feeling so scared about his PV, hopefully you will be able to get him to read the replies from the lovely people here, I am sure it will help him to see that many people have been living fairly well for many years with PV, I can also send you one of our information booklets which may help both of you, just email me at [e-mail] with your address. Also, try and get your husband to have a look at our website mpnvoice.org.uk there is lots of very useful information on there, including stories from people talking about their MPNs, and also have a look at some of the videos from patients, I am sure it will help. With regards to forums in Ireland, we are arranging a forum in Belfast for 2018 and hope to be able to also hold one in Dublin or possibly Cork. Best wishes, Maz