hello everyone, my sister has been recently diagnosed with PV.
Can anyone tell me honestly what the best things i can do to help her are. I don't care if its boring jobs that will help out or researching on her behalf, anything that may be even a teeny bit supportive or helpful even if it seems daft.
Thankyou, TC xx
How lovely that you should post in this way and be so ready to help your sister. I think your attitude of care and support will be in itself a huge help - one of the hardest things all of us with a MPN find (I have ET so will leave specifics of help for PV to those that have it) is lack of support and understanding as it is such an unheard of set of conditions and that can be a lonely world hence why this site is so helpful. So yes find out all you can on here and with MPN Voice and Patient Power so you can get to know the sorts of things your sister may deal with as side effects of both the disease and any treatment she may be given. Most of us deal with fatigue of varying degrees which can come and go with no warning and many have to adjust to a slightly different life pattern of doing the things we love but to a little lesser degree often. Because we invariably look fit and healthy it can often be hard for friends, family and work colleagues to understand these adjustments - so your sister is lucky to have you, you are already helping just with such a kind attitude. All the best.
Hi TC
Just having a sister who so obviously cares is fantastic already !
I was diagnosed with PV last year and can testify that having a caring and supportive family makes a huge difference .
On a practical level, going along to hospital visits when needed is a huge help plus reading up on MPNs so that you can discuss it without your sis having to explain everything over and over again . Even though, myself , family and friends are mostly all either nurses or physiotherapists we took a while to get our heads round this quite rare blood cancer . I personally got tired explaining it over and over although I had to, as kind and concerned friends wanted to understand my condition. I think if you read some of the MPN leaflets ( Maz our superb administrator can send you some ) you will gain a good understanding of what your sis is going through and experiencing. Sometimes just understanding how although we often look well we can be suffering with extreme fatigue and some of the other symptoms like brain fog , tingling in our fingers, headaches etc . Also to be able to off load occasionally is a great help.
You sound like a great sister - I know my gorgeous sister and family have made a huge difference for me . Also by coming on our forum you both now have a caring and suppprtive extended MPN family .
E hugs
Love Dianne xxxx
Hello TC, I agree with Dianne and Helpatlast, you supporting your sister in this way is a great help already. I can send you an information booklet, if you could email me at maz.cd@mpnvoice.org.uk with your address. Just being there for your sister will be a great help, and try and get to recognize when she is not feeling so good, or fatigued, these are the worst times for most of us with MPNs, and just having someone there to make a cup of tea or go and buy a cake makes a difference, when I am really bad my husband does this for me, as does my big sister and it does make a difference. Also, she may get frustrated when she can't always do things because of being fatigued, or bone pain etc, so again, bear that in mind if she gets a bit moody with people around her, or herself, I know that I get very frustrated some days when I can't whizz around doing all the things I want to do, and if I take time in climbing stairs etc, so your sister may have days like that. I would also advise you and your sister to read as much as you can on our website mpnvoice.org.uk, and also look at some of the videos we have on there, some are of consultants talking about MPNs and some are patients which are very interesting and extremely helpful. It can be very scary when you are first diagnosed and a lot of information to take in, so it is a good idea if you can go along to appointments with your sister, if she will let you. Best wishes, Maz
From a personal standpoint, going to appointments with your sister is a nice idea depending on what she feels about it.
Obviously it helps in having a second pair of ears to take in and discuss what is being said, and is also very supportive. However I personally found when I was in my post- SCT follow-up phase that my wife's presence impinged on my 'one on one' exchange and understanding with my consultant. So check with your sister first. Also, her needs may also depend on the evolution of her condition and understanding of it.
Best regards
Crapaud
Hi TC,
Welcome to this forum. I have PV and wish I had a sister like you. The best thing I ever did was join this forum. The other posts have given you super advice.
Kind regards Aime xx😺😺
As everybody seems to agree, your sister is lucky to have you caring. I know well what isolation feels like.
I have been being treated for PV for 3 years now - at first it was scary but now it's just something to be lived with and I can even think of a few advantages - having an excuse to not do what one doesn't want to do for example. Getting away with being crabby (see below re. being open)
Things I'd suggest helpful: Already mentioned by others about accompaniment for hospital appointments - especially if venesection is involved. Doing the shopping when feeling lousy occurs. Cooking the meal when your sister feels she just can't be bothered.
Encourage your sis to be open about her condition with friends etc. They will almost certainly tell her how well she looks and they will need to be told that she might be not feeling well however well she looks.
Keep a record of blood counts and learn what they all mean. Mine fly up and down like a loo seat in a unisex toilet.
Don't get worried by stuff on the internet that may or may not be total rubbish - this forum is the place to be. I suspect that a lot of us know more about our condition than our doctors - I asked my GP what he knew about PV and he said "you've got it" honest or what?
Thank you all so much for taking the time to reply, i truly appreciate all your advice and kind words and wish you all the best xx
Hi! I have PV and I wish I had support like you! Be her advocate that's the best advice I can give, just be there. Hugs
Hi,
I was diagnosed with PV 8 years ago. I'm 63. You don't don't say how old your sister is or if she's still working? I buddy about 19 people, quite a few of them, like me, have few or no symptoms, and if your sister does have symptoms it could well be that they will be much improved with the right treatment ( I stress right, that's really important. Some haematologists are so much better than others, and some specialise in MPN's. Make sure she's seeing a good one.) Fatigue doesn't affect everyone.
It's important that she isn't frightened by this diagnosis. There are a lot of us out here, quietly and happily just getting on with our lives! It will probably take her about two years to get her head round having such an unusual diagnosis, then she'll just get on with it. I have met people who've had this for almost 30 years, and I'm convinced a cure will be found in the next ten years.
May I suggest you email Maz, a super lady, for more info, including the wonderful patients day at Tavistock House in London in November.
Haematologists from all the over the world specialising in MPN's attend, as well as numerous very jolly patients! Do try and attend if you can.
More info from Maz.
Chin up, she'll be absolutely fine. Tell her to drink loads of water - ( at least 2 litres over 24 hours - keep hydrated) get out and walk briskly for 30/60 mins a day ( especially if she is feeling tired - she needs to get her blood circulating) and cut out ALL processed food if she can and if she eats it - extensive research is finding that processed especially fast foods cause inflammation- bad for all of us!
Love
Louise
xx
Hi TC. I agree with everyone else that just having you as a sister will be one of the best things for her. My sister who has had breast cancer (and her son a brain tumour) tells me that she doesn't know why I even mention my illness as she has googled it and it's nothing. So of course I never mentioned it to her again. I do feel for her of course as PV is treatable and sadly her son's cancer was not - I am lucky in that respect. So just listen and be there for your sister and keep reminding her there are lots of people living with an MPN for many many years - I was diagnosed twelve years ago and it's there but I can live with that 😊. L x
3 words that were uttered to me today that sum it up, SUPPORT, COMPASSION and EMPATHY. Be those to your sister and I know she will appreciate anything you do for her! You sound like a great sister, going to tell my sister about your post 
xxx
thank you everyone for replying. My sister is 46 and had her first experience of veneration this week. You are completely right when you say that there is a lot to get your head around! At this current time she is having difficulty with the fatigue and dizziness and i am not sure whether she will be able to work.Are there any benefits or things we can apply for to help her until her condition is under better control?
You are all amazing xx
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