1. Community
  2. Blood & Immune System
  3. Polycythaemia Rubra Vera

High levels but going on vacation

Posted , 9 users are following.

mikhail91498
mikhail91498

I am a 28 y/o F. My hemoglobin is 17 and my hematocrit is 50. I am currently seeing a hematologist who is testing for Secondary Polycythemia and Polycythemia Vera. However, I am still waiting for results. With these levels, is it safe or ok for me to go on vacation for 2 weeks?

0 likes, 36 replies

36 Replies

Prev Next
  • mikhail91498
    mikhail91498

    Posted

    I am not flying. I will be camping for 2 weeks. So outside mostly where the temp is around 85°F

    I am not any treatment currently as still waiting on my JAK test, as well as LFT, kidney, pulmonary if its secondary.

    My hematologist has said I have it just not sure if it's PV or secondary.

    • paul250360
      paul250360 mikhail91498

      Posted

      I'm with Frances - at least check with your specialist first.

      Once you have commenced treatment (if required) you should be fine to pretty much do what you want.

      I'm 55, walk 10 to 15 kms a day, play basketball and travel overseas occasionally. A 3 monthly venisection, a daily aspro and a yearly visit to my haematologist has been my regime for many years.

  • frances20411
    frances20411 mikhail91498

    Posted

    I am not sure how far (when camping) you would be from medical help if needed.

    It appears to me that you have yourself ready for this trip.  I cannot advise since I am not qualified as a doctor...but I would err on the safe side since there appears to also be questions about PV to begin with.   Find another vacation and leave camping for later when it is decided if or what treatment you will need. 

  • mikhail91498
    mikhail91498

    Posted

    Gah. Ya I agree. My primary really doesn't want me to go.

    Kills me that I had to wait 6 months of abnormal cbc before insurance would approve anything.

    Its definitely a long ways from any medical facilities, they actually use heliport to transfer people who are in need of a hospital.

    This whole process has become very life limiting to me, I'll be so happy to have a final diagnosis.

  • frances20411
    frances20411 mikhail91498

    Posted

    It is interesting that when one is young....how disappointment sets in.  You will find that your life will return to "normal" once a diagnosis is made and treatment given.

    Isn't there something else that you can do??? during vacation time.  I am sure you care about your health or you would not have even taken the time to ask any questions on this site.  Good luck!!

  • clem19079
    clem19079 mikhail91498

    Posted

    Unless your feeling really unwell I would try to have fun. Just try to drink as little as possible and try not to smoke to much, as those hobbies will make your symptoms worse regardless of you having PV or PV. Bring me back something smile
    • frances20411
      frances20411 clem19079

      Posted

      I am stunned by this messages you gave.  Do you personally have PV

      or just a young friend???

    • clem19079
      clem19079 frances20411

      Posted

      I was born with it. But was diagnosed over 20 yrs ago. I had to quit smoking and booze completely due to the effect they was having on me. PV means you getting less oxygen , so when I smoked and drank that made a bad situation worse. I didn't just have a smokers cough, I was suffocating. I save the booze for special occasions only and even then I limit myself. Sorry if I gave you bad news, that's the pleasure of PV. That said , even with PVR booze n fags will have to go. No doubt you will be informed of this when your results come back. Be well.
  • peter98873
    peter98873 mikhail91498

    Posted

    I would point out that Hydroxyurea is now renamed Hydroxycarbamide.  This is normally used in treatment of cancers but is also used for treatment of PV, under strict medical control.  I used this for many years but the increasing dosage needed  to control PV caused me severe problems physically.  The drug was discontued and replaced with a newer one used in a hospital trial in which I was participating. i was placed on the placebo which proved to be a continuation of hydroxycarbamide, the only best treatmant open to me and this was stopped as described above.  If you are prescribed Hydroxycarbamide use it as instructed and be aware of any unusual symptoms that affect you physically.  The maximum dosage can prove too much over a period.  I have had PV for quite a few years and last year drove across Europe and joined a river cruise holiday.  No problems.  Be sensible, do your medical homework early and all will turn out OK.  Speak to your haematologist first.  Mine encourages me to live normally.  Enjoy your holiday.  You'll be fine.  Good luck!
    • frances20411
      frances20411 peter98873

      Posted

      Thank you for your experience with hycroxyurea.  My onocologist has been after me for 3yrs. to take it...I just don't like the side effects that can come from it.  I opt for phlebotomies for those 3 years now doing so weekly to keep my HCT at 44 or below.  My platelets which are not touched by phlebotomies are actually what I am watching more closely since this is the indicator of blood clots...presently mine runs between 500.550.  I take baby aspirin for that.  I was wondering if you

      take any iron pills or eat red meat and do you drink a fair to large quanity of water.  I would most appreciate this info. 

    • clem19079
      clem19079 frances20411

      Posted

      I limit my red meat intake and wouldn't dream of taking any type of iron supplements. Despite suffering dreadful restless leg syndrome I wouldn't risk the chance of anything else going wrong.
    • frances20411
      frances20411 clem19079

      Posted

      Wow! you sure have had a tough life.  You did not mention is you are on any treatment such as a phlybotomy or med.  I am not inclined to

      booze or cigarettes.  Never have...but PV got me anyhow.  Keep up he good work.  

    • clem19079
      clem19079 frances20411

      Posted

      PV is genetic , but PVR is acquired, treatment and change of life style can either cure or control it. Not sure which. I have a house hold full of women , so yea I living the nightmare smile
    • peter98873
      peter98873 frances20411

      Posted

      Hello Frances.  No, I do not take iron pills which I am advised are not recommended with PV.  They can prove very troublesome.  As far as drinking is concerned, I have an occasional wine or whisky with water, but in moderation.  It is really a social occasion when I have these.  So far I have not suffered.  The only things I am told not to take is marmalade (Seville Oranges) and grapefruit in any form.  The acid can affect the Ruxolitinib  I

      am prescribed.  For years I took Hydroxy Carbamide (Urea) which controlled

      my PV beautifully.  The problems arose when this drug became less useful

      and the dosage was increased to compensate.  Eventually I was quite sevely affected and  taken off Hydroxycarbamide which presented me with severe foot probllems, and prescribed the new drug Ruxolitinib.  I have found this beneficial and am required to visit haematology frequently   I have never undergone venesection for PV.  I must say my faematologist has been absolutely supportive throughout.  Red meat is no problem but don't overdo it.  Be sensible and follow a healthy diet.  Drinking water is very helpful as the kidneys need protecting as they too cleanse the blood.

  • alison_29881
    alison_29881 mikhail91498

    Posted

    I am interested in Clem19079's comment that PV is genetic but PVR is acquired. I have never smoked, don't drink much alcohol, don't live at high altitude, but my haematologist diagnosed PVR.  She said I had a faulty JAK2.  I've had 3 venesections so far and am on a daily baby aspirin.  I've booked a med cruise (no flying) in October, so I hope I'll be ok.  I had no symptoms (apart from sweating and restless legs - but they are also symptoms of Parkinsons which I also have) It was a chance blood test that picked up HCT of 0.55. I'm hoping it's gone down with all the water I'm drinking!   
    • clem19079
      clem19079 alison_29881

      Posted

      For many yrs my consultant insisted that I had PVR only a few yrs later had to admit she was wrong. She elected to to leave that little ditty out during many consultation later. So they can be wrong in their findings. Enjoy ur hols.
    • alison_29881
      alison_29881 clem19079

      Posted

      It's hard when you've never heard of what you've got before you're told by a medical professional.  But you're right they don't know everything.  This is why, with caution, the internet and forums such as this one, are so useful.
    • clem19079
      clem19079 alison_29881

      Posted

      I am lucky in that I have a GP that has a very good understanding of what I have and how it will affect me both now and in the future. I was a drinker and smoker, so when my consultant told me what I might have, I just new somehow she was wrong. So I stopped smoking and drinking completely to prove my point, thing is she didn't bother to tell me for yrs that I was right the whole time . I based it on my medical history as a child. The symptoms caused by PV are the same as those when I was an infant. I had and my mum put it down to nerves and the troubles in ireland at the time. That said , for example if I have a couple of pints on an annual of some type , my levels climb dramatically. I need blood off at the min as I am itchy very lethargic and getting lots of headaches and vertigo attacks as well as other things.
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.