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?
You did not specify how you were traveling (if you were) and what the climate was at your destination..this makes a difference. Also you did not mention what type of treatment you are on...medicine or phlebotomy (I am in America) or both.
17 hemo is on the high side and 50 hct is also bearing on the higher side.
Hi.
It depends whether you are flying or not. DVT's are risky when flying as your blood is thicker than normal. There is medication available for this however.
The safest thing would be to ask your haematologist before going on holiday.
You are young to have PRV but I was diagnosed myself at 30 after being a blood donor for 10 years. I've had PRV now for 25 years and funnily enough my treatment essentially is the same as when I was a blood donor. Unfortunately my unit of blood every 3 months is disposed of.
all the best
Paul
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.
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.
Hi! Paul: I was replying to another patient when I noted your info. I have a question; Are you also on hydroxyurea??? and what is you platelet number??? I have personally had PV for 3 years and only do phlybotomy and not the med hydroxyurea...I don't like the side effects of that med. Would appreciate an answer. Thank you.
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.
Hi Frances - not even sure what hydroyurea is !!
l have a 3 monthly phlybotomy and a daily aspirin and a special tablet if l fly long distances to prevent DVT's.
All good apart from that.
Thank you for the reply. Hydroxyurea is a Chemo type med used in America...has to be handled with gloves and the side effects are somewhat like infused chemo. I won't take it. My HCT hovers around 44 and at present I am having weekly phlybotomies to keep it there. I was as high as 56HCT... plus a daily baby aspirin. I have had DVT and was on Xarelto once. I feel good and the only symptom are red palms of the hands. PV is just a frustrating disease. I have come through 2 other cancers (not breast) and in remission from both. Caught both in stage 1.
Paul I would like to add that my parents are from England..I was born USA.
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.
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!!
Thanks for the info on Hydroxyurea- hope l never need to take it.
My HCT hovers in the high 40's but has gone into the mid 50's.
l had a DVT 5 years ago as a result of snapping my achilles tendon playing basketball. The PRV would have helped developing the DVT. That was some ordeal as the DVT got into my lungs..
I'm an Australian.
Hi! Men can have a higher HCT...I am glad that you came through the DVT in the lung...that is really serious. You never answered what are your platelets number since phlebotomies do NOT touch the number or platelts and platelets are what clots your blood.. Aspirin has some effect on clots..I don't think a great deal. Also I forgot to mention that I also drink a lot of water @60 plus ozs. Is water part of you routine??? Thanks
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 
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!
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.
I am stunned by this messages you gave. Do you personally have PV
or just a young friend???
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.
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.