I am new to PV and this website

I am new to PV and this website

Hi, I was diagnosed with PV about a year ago. Have had four phlebotomies so far. I live in the US so I hope I am not intruding. Does everyone have to keep their Hemoglobin levels below 14? I am experiencing severe exhaustion. All I have read says I should take walks, exercise. I do not have the strength most days to walk. Depression is beginning to set in. You all sound so strong. I admire you. I was a Registered Nurse and am 76 years old. I find that nurses and doctors tend to look at worse case scenarios. Thank you for all your strength. It is heart warming to read your posts. 

37 Replies

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  • Welcome to the group!  I, too, have PV (diagnosed in 2007).  I live in Illinois.  This is a great place to find answers, and even the right questions to ask your doctor.  Depression is common, at least it has been for me.  It comes and goes, but I find if I keep my mind busy I can make it through.  I also find that knowledge helps.  Find out all you can about PV.  Fatigue comes with it, too.  Again, it comes and goes.  Hang in there!  You can do this!  We can do it together!

    Becky

  • Oh Becky, thank you so much for the encouraging words. They mean a lot. It's the exhaustion that is really getting me down. I live in an extremely active community and it is a struggle to keep up. Do you follow a special diet? I do not like my hemotologist and will be making a change. Keeping my hemoglobin below 14 is a chore. Thank you again. You are so kind. 

  • Typically (in the States) the number the doctors are really concerned with is your HCT (Hematocrit) which should be kept under 46.0 Always review your CBC's. As long as you keep up on your phlebotomies you should be fine. Fatigue can be a teal issue. Drink lots of water and have they checked your ferritin? My wife has to keep getting infusions so it ends up being a vicious circle at times. Ask your doctor if they want you to take a baby aspirin each day.

    ~ Blue Skies ~

  • Good morn Blue Skies. Thank you for your reply. I have been really good about hydrating. I have noticed that my hemoglobin levels are not climbing as fast with more fluid intake. Last phlebotomy was in April. Fatigue not as bad either. Weight gain a problem. All reports say that weight loss is an issue. I have the opposite. Could be due to heat intolerance causing me to not be able to go for long walks. Temp here in New Jersey running in 90's along with high humidity. Does anyone else have heat intolerance? Have had it for years way before I was diagnosed with PV.

    Sending love n hugs to all you awesome friends. Harlie

  • Sorry, forgot to mention I do take a baby aspirin daily. Not sure if ferritin level checked. Will look into that. Harlie

  • HI, 

    My husband has got pv jak 2 positive he was diagnosed 3 years this November. He was absolutely exhausted every day. He was having venesectionevery month which was draining his iron levels.

    His consultant keeps an eye on his hemocratic level this is the blood thickness he likes it to be 0.45.

    He went on to a chemotherapy tablet in October last year he feels so much better in himself. He is back next month he will need a pint of blood taken off he's managed to go 8 months without a venesection now.

    My husband is 43 years old we were devastated when he was diagnosed but it can be managed and it's not invasive.

    Good luck 

    Tracey

  • Hi Tracey, Thank you also for your reply. I have found more encouragement from you all than I have from my Dr.  I am so grateful that I found you all. I will keep check on my hematocrit rather than hemoglobin. I purchased a kit that I will start using so I can personally keep track in between visits. Hugs to you and your husband. 

    XX Harlie (Kinsalelady)

  • I don't know a lot about pv, I have ET, but you're probably doing the right thing changing your doctor to one who has more experience with the disease. You'll get lots of information from this site.

    Best Wishes 

    Lizzie

    Ps Love the hat, you look fab!

  • Hi Lizz, oh yes, I will be changing Drs. I may go to New York City where there are tons of great ones. I will get a referral. 

    Thank you for your hat compliment. I hold a High Tea for 40 lady friends each year so of course I must wear a fascinator. LOL

    Be well and thank you again for your support. 

  • Hi, and welcome to the group.  As Tracey says many of us have experienced a roller costed ride when we were first diagnosed with the initial shock and lower iron levels from phlebotomies.  But once we got to understand it more and went on some medication, speaking for myself, I stabilised.   I still have good and bad periods but I am used to them and being distracted by something I enjoy is a great help.  My blood levels are kept to 13/42.

    I found it was vitally important to have an expert MPN haematologist, especially at the beginning.  As you are in the US I have pasted below a link to one of the US MPN sites and they have lists of the top consultants in different states.  But I hope you stay on this site too and let us know how you are getting on.

    Mairead

    -To reach a list owner,  write to mpn-net-request@listserv.acor.org

    -To search the archives:

              listserv.acor.org/archives/...

    -Frequently asked questions (FAQ) about PV, ET, MF, CML:

    mpdinfo.org

    -General Rules for the ACOR Lists at acor.org/faqs/lists/listrul...

  • Hi and thank you for the welcome. Thank you also for US website information. I will check it out immediately. I am currently in Florida and will be returning to New Jersey next week for the summer. On May 14 we leave for Ireland for a month. I want to make sure my levels are good while I am away so I don't have to find a hematologist there. 

    Thank you and all of you that have replied. I can already feel the support. 

    Hugs, Harlie

  • My husbands hematologist said any long haul flights he would recommend a blood thinner injection tinzaparin before flying.

  • Thank you Tracey. I am having blood work done in Tuesday and am scheduled for a phlebotomy on Thursday if needed. I will ask about the blood thinner. Had a phlebotomy on 4/29 as hemoglobin was 15.1. It's the exhaustion that is overwhelming. 

    Sending hugs to you and your husband. 

  • Hi kinsalelady, of course your not intruding, you are more than welcome on the site and I hope you find it as helpful as I have since I joined.  I call everyone on here my MPN family.  

    I am afraid the exhaustion becomes part and parcel of the disease but something you do come to live with and make part of your lifestyle.  Like you, the thought of exercise is overwhelming but keeping active, both mentally and physically is the key.  When you are tired, rest.  I have found short power naps really helpful or else I start to slur my words and the confusion gets worse.  If your health professionals are full of doom and gloom then look on here to see that you can live a near to normal life with PV and hearing other people's experiences will prove you can carry on and do most everything you did before your diagnosis.  Hope you enjoy the site as much as I do, Jill xx

  • Thank you so much Jill. Wrapping my head around this has been difficult. I have gained 6 pounds in the last month due to my exhaustion and not getting out to walk. If I can be honest, I am scared. I have not admitted this to anyone. I worry what this may lead to more than what I am feeling now. I am so happy that I found this website as I cannot seem to speak with my hematologist. I must find a new one. 

    Thank you for your kind words  They mean so much.

  • Everyone has the punch in the stomach kind of fear when diagnosed and reading stuff on some dodgy website will not help so please stick to this one where you will hear from people who are going through or have gone through every phase of the illness.  Don't live your days worrying luv, other than the pesky tiredness and regular hospital visits for VS I cannot say that it has had a real detrimental affect on my life.  Please find a consultant you are confident in and whom you are not afraid to ask questions.  Don't let this overtake your life luv xx

  • You just brought tears rolling down. I can't thank you enough for your comforting words. I will find the right Dr. and I will keep up with this website. 

    Love n hugs Jill

    Harlie

  • your more than welcome my luv xx

  • Slurring your words is not a good sign. You might need to be on blood thinners.

  • Hi Kinsalelady, no you are definitely not intruding. We are all here to help one another.  I am not sure about using hemoglobin levels as a measure.  I have PV, live in Scotland and it is always my hematocrit that is used.  At .45 and above blood is taken off.

    Maz, our editor will perhaps be able to answer your question.  The MPN Voice website is a great source of trustworthy information and advice and the lovely people on this forum will give you lots of support and we can send "e" hugs too.

    It is difficult to deal with the fatigue.  Try and drink plenty water, eat healthy and exercise as much as you are able to. I may be wrong but I find if I need blood taken off and I exercise a lot, I feel worse but when my counts are okay, it helps a lot and seems to reduce the fatigue.  Keep in touch, kindest regards Aime xx😺😺

  • Welcome aboard Kinsalelady! You will learn so much on this marvellous site.Everyone supports each other, we all have the same worries and woes.I am same as you 76was diagnosed at 69 with PV,while at our French home,very scary at first,the fatigue is ghastly and hard for others to understand as we generally look O K. I am 'laid out ' just now ,I over did things this morning,rest you must ,before total collapse ,which I have done so many times,being carried off to hospital by our 'pompiers'after ending up in a super marche chariot!!!!You learn,and deal with it,hard to adjust when used to a busy life...I am on Hydrea and other Meds,they don't do venesection unless absolutely vital here,tho I had them until cells were level,then the chemo pills,adjusted according to my monthly blood tests,every nation seems to do different things.You will cope ,honestly,keep positive ,energy will come back,read the advice Maz provides here,Very Best Wishes,sending you strength across the miles!!xxx

  • Thank you so much Inca for your great words. Chemo has not been suggested as yet. So far phlebotomies have been handling it. I am just afraid that they will become more and more frequent. 

    I am so amazed by the strength I have received from you all. You have done more for me in several hours than my Dr. has done in months. 

    I truly feel the love, support and strength and am so very grateful to you all  

    XX Harlie

  • Great Harlie,you can cope !Aime is right ,drink water as much as you can,bit of a drag looking for loos when out !!!!Makes a big difference to the headaches etc.,I am awake now,so will stagger around the garden with my German Shepherds helping me,when I feel well ,walking is my exercise,keeps blood flowing and aches and pains away,limited to what I can do with my horses ,but as my consultant says'You should not be even thinking about horses at 76!!!!'Isn't it great we all can help each other? Do things you like ,keep interested,keep the brain going,esp when you are down...I have been thru the depression,it comes back sometimes,my Dr helps with that,I think we all get it from time to time.We are alive tho,that is the main thing. XxSally

  • Thanks Sally. I am drinking (water) as I write this. Everyone has been so helpful and understanding. For the first time I feel as though I can get through this. I try so hard not to be a downer. I was always the comic but seem to have list that. Through all the love I feel here I will be funny again. 

    Have a great day, enjoy your garden, Shepherds, horses and all else that makes you happy  

    Sending smiles and love to you and all  

    XX Harlie

  • My husband had his check up today his hemocratic level was 0.48 3 months ago it's now 0.52 so he's had a venesection today.

    He's gone 8 months with out a venesection he's on hydroxy so he's opted to have a venesection every 3 months to keep his hemocratic level down.

    He lives a normal life and forgets he's got a blood cancer.

    There's so much support on this site it's great.

    Luckily my husbands consultant is a lovely guy he's so down to earth nothing is a problem to him.

    Tracey

  • Thanks Aime. I am a poor water drinker but I WILL change that. My exhaustion worsens after the blood is taken. Sometimes it lasts for four days. I have always been extremely active so this is a downer. I will do my very best to get out and at least walk. 

    Everyone has been so encouraging that I feel I can handle this instead of giving up. 

    Thank you again. XX Harlie

  • Hi Harlie, I take a few days to get over the venesection too and then I have more energy until blood starts thickening again. I know it is difficult to be patient with yourself. My GP said" well if you need a sleep in the afternoon is it such a big deal, just take it!"  I suppose he's right. I have managed to keep working but not sure how much longer I'll be working full time but I could be a lot worse off.xx take care, keep in touch Aime😺😺

  • I have also been a poor water drinker but I have recently found a drinking bottle that has an inner compartment in which you can put fresh or frozen fruit to flavour the water naturally and I am now finding it so much easier to increase my fluid intake. I am enjoying experimenting with different flavours. Try googling fruit infusion bottles but I noticed that Tesco had them in their picnic ware section. Several people have seen my bottle and purchased one for themselves. Hope this tip is useful for you. Best wishes, Jan x

  • Thanks so much Jan. I will be in Iteland in May and am familiar with Tesco. I will definitely get a few. Everyone has been amazingly helpful. I cannot express my joy in finding you all. 

    Hugs, Harlie

  • Drink plenty of water and eat something before phlebotomies. It will help with the strength.

  • Hello Kinsale Lady.   Don't despair it is early days yet.Hope some of these wonderful people will have helped     .I was diagnosed with PV just a couple months ago, and so far I have had 6 venasections.  I do feel far less weary after last weeks visit and heamotologist is anticipating  that my blood will have reached the level where medication must replace further venasections.    but I'm still in a sort of vague no mans land trying to understand /deal with  this condition that has been taking away  my usual vitality and energy most days.   I am almost 78 and also awaiting assessment for hip replacement so exercise is a must and forcing myself to do these  as well as  walking around 20 minutes, continuing line  and country dance 3 times a week helps me to  keep that old black dog at bay more days than not.     

      

  • Hi, so nice to hear from you. I can't tell you how much these wonderful people have helped me. I only met them this morning and I feel like you all are family. Good for you keeping up the dancing. Good luck with your hip replacement assessment. 

    Thank you also for your reply. 

    Hugs,

    Harlie

  • You are right,we ancients must keep our bodies moving,we are better for exercise,must rest tho too.When you get on Meds you will feel better than the venesection s.Awful when vitality goes ,I felt I was fading away.Bred horses all my life,and busy sculptor...all went for a while....it does come back ,I work again ,slower now ,but an exhibition in July,heavy work with horses ,no,but I have them,love them and my dogs,hubby is a massive support,you will soon be more normal,interesting a few older people being diagnosed,I am 7 yrs with P V now

  • Sorry did not finish ,knocked I pad over!!Best Wishes ,keep strong x

  • Hello Kinsalelady, what a lovely photo of you, and no, you are most definitely not intruding, this group is for anyone who has a MPN, and their family and friends.  Your main question was about the haemoglobin levels, I have asked Prof Harrison, Guy's & St Thomas' hospital and she has said: No we mainly look at HCT/PCV (haematocrit/packed cell volume) and run it below 0.45. 

    I am sorry to hear that you are experiencing exhaustion, it can be so difficult to manage this, exercise does help though, I know it's the last thing you want to do when you are tired, but even a gentle walk can help.  Perhaps having a buddy to talk to might help you as well, having someone to talk to who really understands how you are feeling can help so much, if you would like to have a buddy then please email me at maz.cd@mpnvoice.org.uk and I can send you the details.  Best wishes, Maz 

  • Hello, I am 74, have PV diagnosed 6+ years ago, treated with phlebotomies and hydrea, also low-dose aspirin. Keep hematocrit below 45% is my advice, and be patient! I was exhausted to start with, and have had ups and downs, but now I seem to be on a n even keel. Some days are better than others, most important is get enough sleep (half Atarax if necessary) and look for things to keep you going. I now do Pilates and Zumba, walk the dogs every day and cycle sometimes, but listen to your body! I changed my diet, no meat, plenty of fruit, vegetables and salad and no alcohol, lost the breathlessness and am keeping well. Positive thinking very important.

  • Thank you. Lovely hearing from you. I have been hydrating like crazy and that seems to help. I do try to walk as much as possible. Have trouble sleeping longer than 6 hours. I fall asleep very easily, staying asleep is difficult. Nap occasional in afternoon. Best to you Hugs,

    Harlie

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