Newly Diagnosed Polycythemia. Confused and nervous! Looking for advice!

Hi my name is Paul and I'm a little nervous and confused. I'm looking to reach out to people in the polycythemia and MPN community for some info, advice, and or support! Here is my story: I was diagnosed this year with panic disorder and have been just getting that under better control in recent months with medication and seeing a therapist and psychiatrist. One of my last really bad panic attacks made me go to the hospital because I was so frightened and couldn't calm down and had chest pain. When they took my blood my hematocrit was 57. They referred me to a hematologist. I dug and found my blood work going back for the last 10 years. Apparently my hematocrit and hemoglobin has been fluctuating up and down for at least that long. I showed the hematologist and he said this is very odd you fluctuate year to year like hematocrit 54 one year, then 48, then 54, then 52 the next, then 55, then 51. He said " in my professional opinion you don't have polycythemia. There is nothing to account for the fluctuation, you've never given blood. usually over the years it goes up consistently. Also you have never had any symptoms" and he palpated my stomach and said it was fine. He said this type of disorder progresses fast and you show no signs or symptoms.

Anyway he sent me for a mass study and It came back that my red cells are producing too much and a slightly low plasma. They said it was consistent with polycythemia but they were sure what was causing it. They said I tested negative for the jak 2 gene and they tested a bunch of secondary causes and they were negative.

So since then I've gone back and had my first two phlebotomies. At my first appointment my hematocrit shot up to 60. They took my blood and the next two days I felt weak and sick and awful.

Then I just recently went for my second phlebotomy a week later and they tested my hematocrit and it was 51 down from 59. They took more blood and I felt dizzy and my blood pressure dropped from 122/82 to 80/50. The doctor came out and they elevated my legs and gave me three bags of fluid. He then said to me we might be able to be more lenient with these phlebotomies and Ill set your target at 50. I showed him my dads blood work and that I found and apparently his hematocrit fluctuated a little over the years too but not as high as mine. His was like 48, 49, 52, 48 - from year to year. Also found one blood work where my mother was at 52 once. So the doctor said he thinks its familial now and that there is no cancer risk just need to keep my hematocrit controlled to prevent thrombosis. He sent me out and said to come back in two weeks. And he sent me out with referrals to get an ultrasound of my spleen and kidneys. After my second phlebotomy I felt dizzy and tired again but not sick this time. They may be taking too much blood!

So now I'm nervous because I read that its rare and only a few familial cases have even been reported. I'm scared and hope my kidneys don't have any tumors and that my spleen is ok. Does this sound normal to anyone ? or has anyone had a similar experience? When they first talked to me they weren't sure I had it and then they were confused for a while and said maybe I have a genetic defect yet to be discovered. Now they are saying familial. I am also worried about cancer risks, how this will affect my life span, and how likely it is I'll have a thrombotic event. It says you don't live long undiagnosed but apparently I've had this a long time and no one diagnosed me until now. Also is there anything I can do to reduce my risks? exercise? sleep? hydration? I read a study showing grapefruit lowered hematocrit naturally. It just seems like everyone is confused and I may be getting a second opinion soon as well as seeing an alternative doctor. Anyway I'm confused and scared and if anyone has any advice I would appreciate it! Thank You!!! (also its just my red blood cells not my platelets so they said no aspirin!)

14 Replies

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  • Hello Paul and welcome .

    I have ET JAK + but there are lots of lovely people on here and I'm sure someone with PV will be along to support you soon .

    It is very scary when you are first diagnosed and it's very tempting to google but a lot of the information on the Internet can be outdated .

    You will learn a lot from the people on here and as you learn a bit more and realise that your MPN can be managed it lessens the panic feeling that I think most of us can relate to .

    My heams words on leaving the clinic are always "keep hydrated keep active" so I take that advice . I don't drink so that's not a problem but I do love chocolate ! But try to eat organic food .

    I hope you feel less scared as you gain more knowledge

    Helen

  • Hi Paul,

    I'm sorry you are feeling so worried about your diagnosis, though most of us are intially. I have been diagnosed with PV for 27 years, and probably had it for longer. I'm Jak2 + but when I was diagnosed nobody knew anything about Jak! We have rare conditions which are still being researched and found out about. Personally I would seek a second opinion with someone who is experienced in treating mpn, otherwise it may be a bit play it by ear. I would expect that a healthy lifestyle is good for all of us and must help. On your very last sentance... I only had red cell involvement initially but presented after having a heart attack, and then went on to have a deep vein thrombosis... its not just high platelets that can cause clots!

    As I have proved its perfectly possible to live a long and full life with mpn.

    Good luck, and know that you aren't alone. Fee

  • Hi Paul,

    I echoe what Fee and Helen say above. Hydration and healthy lifestyle make good sense for everyone.

    If you have PV then your life will change. If your bone marrow is making too many red blood cells the excess will have to be removed. Initially it will be by venesection and possibly later with medication.

    Many of us experience the same symptoms when we have a venesection. I had 4 in the first 10 days and it was a big shock to my body. But it is so important to get the red blood cell proportion back to a safe level that this has to be done. So you will probably have many more until you reach around 46 which is a safer level for men.

    You sound very organised with having your blood results for the past years. It is a very good idea to keep a chart of results so you can see what is happening.

    Most of us are distressed when we hear we have PV. But we learn that it is a chronic condition that can be managed and when we get the haematacrit down to safe levels we feel a lot better. I spent a lot of time researching PV to understand its complications and now after 10 years I am a lot more relaxed about it.

    Good luck in getting through this diccult time. Hopefully it will pass and you will get back on an even keel again.

    Mairead

  • HI Paul,

    My husband was diagnosed 2 years ago with polycthamenia jak2 positive we were so frightened.

    My husbands haemocratic level was 55 at the time. At present he's having monthly venesections his hemocratic level is not 0.47 the consultant wants it to be 0.45.

    Please don't be scared as the word cancer is very daunting. This rare blood disorder can be managed and you live a normal life.

    We felt exactly the same as you.

    By joining this forum it's helped us so much to understand this condition.

    We found out this pv is covered by the critical illness cover too.

    Pv isn't hereditary or so they say.

    Maybe you need more tests doing to get an exact diagnosis.

    You read up all kinds on the Internet about these mpns I have stopped reading up on it now.

    Good luck Paul

  • Hi Paul I was diagnosed with ET and Jak 2 3 weeks ago, it's terrifying but already I feel better after reading this forum over the last week or so. I have booked myself in for the next London MPN seminar on the 14th November as I'm hoping to get some answers and meet other patients, it's only £10 you might consider it. As someone else suggested though you need to get a proper diagnoses before you do anything else really. Someone else mentioned a brilliant consultant at Barts Hospital who specialises in MPN, maybe a referral there or to a private haematologist just for a consultation might be necessary and then to carry on under the NHS. I'm under a consultant at Southampton General and have been very happy with my treatment so far, she diagnosed me after my first blood test with her. I can't see how you can go any further until you know what you are suffering from if anything.

  • Hi Paul,

    Well you poor old sausage, you do sound in a pickle.

    You don't say where you live?

    I was referred to a local haematologist ( diagnosed 6 years ago with PV) and saw him for 4 years but found him completely dictatorial - you will do as I say in other words- this is a condition which I think affords the patient to be listened to.

    I decamped to one of the best cancer hospitals in the north ( the Christie ) even though I live in Cumbria.

    You are entitled to go to any hospital you wish.

    If I were you I would have a good old look on the web to see if you can find a haematologist who specialises in Mpn's in your area.

    ( if you're in the north west try Tim Somervaille at the Christie - wonderful)

    In London try Guys and St Thomas's .....a super team there led by Claire Harrison.

    I don't think you can move on until you've had some sort of diagnosis do you?

    Whatever you do, please don't be concerned or frightened, and don't stress.

    There are hundreds of us out here living perfectly healthy and normal lives, albeit with a rare blood cancer - you know what, cancer is just a word! If we have to have a cancer this is by far and away not half a bad one to have!

    So, pecker up Paul, this will get sorted but you have to be the catalyst for your care if you like.

    Don't rely on being fobbed off, get your GP to write a letter of referral to a specialist of your choosing.

    Ps I live an uber healthy lifestyle, no alcohol, no smoking, fresh food only, 3 litres of water every 24 hours, and at least an hours brisk walking a day, whether it's on a fell or pounding pavements.......you'll be fine, honestly.

    If you want to chat my no is 07921057552. I buddy around 6 other people and chatting and mutual support is so good.

    Best wishes,

    Louise

  • Hi, I was searching through the forum looking for a guide to specialist for MPNs. And came across your post from 9 months ago. I'm becoming increasingly concerned regarding my haematologist and his experience with MPNS. I'm PV Jak 2+ I'm in the Northwest and know the Christie Hospital, and I'm wondering how difficult you found transferring to them from you designated local heamatolgist. I've had a terrible couple of years and even now they seem to be experimenting still with drugs to "see if they can get the balance right". I never feel confident in what they are doing or telling me. I always come away from the appointment and researching myself what they tell me at each meeting. Only 2 weeks ago I ended up being admitted as an emergency after a bleed they tell me was esophugus varies. Being on warfarin cause them issues as it turned out oI was out of my ideal range. Then I was question about drinking, which I don't. I feel I'm constantly battling to get answers and am not convinced I'm getting the correct treatment. I'm know you posted this a while ago but wondered what your experience was when you asked to be referred to a MPN s specialist.

    Kindest Regards

  • Hi,

    Golly, poor old you. They sound a bit of a shower. I had a similar experience with my local hospital so came home one day and decided to do a bit of research.

    I don't feel it's fair to advertise my specialist's details on this site but he accepted me straight away.

    If you like to email me on louisebroughton@btinternet.com your email address will not be passed to anyone else if you're a bit worried about that.

    Personally I'm not sure why everyone on this site seems to want go undercover so to speak.

    We're all in the same boat - and who else is interested?

    Anyway, drop me a line and I'll go into more detail, or you can phone me on 07921057552.

    Louise

  • Hi Paul I wrote to you earlier and wrongly mentioned a consultant at Barts it is in fact the one Louise mentioned above Claire Harrison who I believe reading Maz's post advises this site and forum. Don't waste anymore time get diagnosed properly.

  • Hi Paul

    Firstly I would say don't worry even if it is PV. The main problem you will have is getting answers to your questions and concerns as I honestly believe no-one has all the answers yet!

    I was diagnosed with PV 9 years ago and still feel fine - and do everything I want to do in life!!!

    It's my Hematocrit levels that I (and my consultant) watch and he adjusts my medication (Hydroxycarbomide) if needed to keep them stable. I also take aspirin.

    Anyway - I take the medication and have checkups every 16 weeks and if I am in Portugal where I visit for a few months at a time I have a blood test there and scan it over to him in the UK.

    PV will NOT change my life and it shouldn't change yours!

    Sorry this is so long winded - it's the first time I've posted on here too 😀

  • Hi Paul, welcome to this forum and to meeting the best bunch of mates you will ever have. It is confusing, frightening and extremely worrying to get that diagnosis. I was diagnosed with PV in 2012 and so far it is controlled by venesection only. I am als jak2 negative, we are in the rare category.

    You will get tons of support from the lovely people on the forum and proper medical advice through Maz on MPD Voice. The best thing is that everyone understands what you and your family are going through. Go onto MPD Voice, the information you read there you can trust. Kindest regards Aime xx😺

  • Hi, ive been to see blood consultant today. Now waiting for results.. Im worried too..

  • Linda, we know how you feel. Try not to worry about something which may never happen. Share your worries and results with the lovely people on this forum. They will support you and understand you. Thinking of you. Aime xx😺

  • Hello Paul, well I can see that you have had some fantastic replies to your post, and there isn't really much I can add other than to say read the information we have on our website mpdvoice.org.uk which has been written by leading MPN haematologists, nurses and patients. I can also send you one of our information booklets on PV which might help, email me at maz.cd@mpnvoice.org.uk, I can also send you information on our buddy support, having a buddy to talk to might help, I can see that Louise has given you her phone number, as she says, she is one of our buddies, it can really help to talk to someone who has PV as they really understand what you are going through. I would also say that getting a second opinion might be a good idea. Try not to panic and worry too much, I know that is easy to say, but we all of us on this forum do understand how you feel, we have all been there when we were first diagnosed, but as someone has said, there are a lot of us who were diagnosed years and years ago and still going strong. Don't be afraid to ask questions, it's always a good idea to write down any questions to want to ask your haematologist, it helps them to understand what you want to know and if there isn't time for them to answer every question during the consultation they can at least take your questions away to answer either at your next appointment or leave an email address so they can email you. We are here to help and support you. Best wishes, Maz.

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