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secondary polycythemia they think.

Posted , 9 users are following.

caufenkamp
caufenkamp

Past few days i have been in the hospital quiet a bit. I originally went there with a lump in my throat and shortness of breath, i was thinking GERD or something of the sort. They took my blood and did some teest and noticed my Hemoglobin was elevated to 20.6.

Today i had to go back to do a few more test and some blood letting. What the docto told me was that they were checking the test for Leukimia, Polycythemia primary, and Secondary Polycythemia. I dont live in a high altitude area. I do smoke, and i am a heavy guy.

The doctor seems to think I have secondary Polythemia and so do the nurses who took my blood due to the original test. But im still freaking since there is no actual report yet. Ive looked up a ew things on pilythemia. But im still not sure what to expect.

Currently I have been very tierd, past few days i go to the hos[ital at about 11am, get out at about 6pm and get home. When im home i normally fall asleep from 7pm- whenever. Its currently 2am right now. Also, ny stomach is upset. That is a bit newer. Just started today after the doctors. I let the blood nd everything, and was fine. Walked around walmart got a few things and then grabbed some Burger King. Thats when i got my stomach ache, and its still not gone away. Its a nausea feeling.

What im curious about is that if these symptons are normal for Secondary Polycythemia? I'll say since i was short of breat 2-3 days ago, i havnt touched one smoke ( I smoke Djarum Cloves about 12 or so a day). Ive been a huge wreck, more scared then i have ever been in my life. Anxiety has gone sky rocket, but i can still sleep. My breathing issues arnt as bad anymore since the letting, only have issues when i have a slight panic attack.

I apologise if the text is difficult to read or if im not making any sense. Also, some info might be sparadic and just thrown into the writing. Im just scared, and curious. Does this mean my lifes over? Will i die soon then? Im not sure what to think.

1 like, 22 replies

22 Replies

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  • caufenkamp
    caufenkamp

    Posted

    Also, im not sure if its noted, But the only thing on the regular blood test they found off was the hemoglobin. I also did the wrist thing when they stick a needle in your wrist. Also, just elevate Hemoglobin.
    • caufenkamp
      caufenkamp

      Posted

      Also, i didnt see anything noted where i wrote to you all. Im only 25 years old.
    • clem19079
      clem19079 caufenkamp

      Posted

      When you post on this part of the forum, we all see it. Unless you choose to msg privately.
  • peter98873
    peter98873 caufenkamp

    Posted

    Hello caufenkamp.

    Sorry to hear of your plight.  I've suffered from PVR for many years and can still live a reasonable life.  If you do have this disorder it is not the end of the world.  There will be ups and downs to contend with but as long as you see your haematologist regularly you will learn more, and come to terms with and get the correct treatment for youself.  It is a very rare blood disorder that needs proper medical control. Most people who find they have this disorder seem to feel the same way as you do now.  It is something that is normally present at birth(defective gene) which often doesn't manifest itself until later in ones life.  Older people are increasingly being diagnosed with this but I am advised that this is simply due to the effect of people living longer.  I would suggest you look at the information available for PV on the various web-sites now available which are very useful, particularly that on the Patient site which seems to be well up-to-date.  Be guided by your haematologist and be aware that there are new treatments coming along that are presently still under research ad will invariably become available once all the testing is concluded.  One thing, if you are diagnosed with this disorder you can still live a long life span, properly treated.  Stay calm, your symptoms are not unusual as you will discover.  I expect you will receive much encouragement from others on this site.

  • clem19079
    clem19079 caufenkamp

    Posted

    Sorry to hear of your plight, I hope things improve for you soon. As for PV or PVR your family doctor can give you med to counteract your symptoms. As for leukemia, there is a very high success rate of being cured or close to it. At least that's the case in ireland. My thoughts are with you.
  • harrishill1
    harrishill1 caufenkamp

    Posted

    Hi caufenkamp. No, I am 74, diagnosed with Polycythemia vera 4yrs ago.

    We can live normal life span. However, Mine isn't secondary PV. So, sometimes they look for what is causing secondary Pv. Therefore, you may need more tests than  I did. the good news is that there are many pv patients who have lived 2o yrs withthe  disease. YOU  do  need to have agood  hematologist. BESt wishes

  • caufenkamp
    caufenkamp

    Posted

    Thanks everyone. So for anypne who might know, are these symptoms normal for secondary Polycythemia? Or at least for getting your first letting out? Im just nervous is all.

     

    • ellen68007
      ellen68007 caufenkamp

      Posted

      Hello Caufenkamp. After serval tests that began in July last year due to routine blood work to where my red blood cell levels were very high. You can expect several tests because they need to know what is causing this. Once I saw the Hemotologist after months of testing and her own testing it was FINALLY diagnosed as secondary Polycythemia. The very last test I had after months was the pulmanary lung function test, plus evidence that showed up on the cat scan of COPD. I as you was worried. Until I got onto this forum of wonderful people that became my support group was such a turn in understanding this rare blood disorder. My course of treatment now that it's secondary Polycythemia is blood thinners to prevent blood clots, I have now seen the respirologist twice and he changed my inhaler that has really helped with my breathing. Last but not least is monthly vitamin B-12 injections that produces healthy red blood cells and gives me more energy and not sooooo tired. I will have regular blood work done. Once every 3-4 months. I as well had to have blood letting treatment. You will be fine once you know for sure. I was the same. It's all the tests and not knowing is the worst part. Good luck and keep the doors open to this forum. That was my link.
    • clem19079
      clem19079 caufenkamp

      Posted

      The symptoms for PV and PVR are the same really. You can get a full list of symptoms online. PV is genitic, pvr has a cause. The symptoms can pervade whether you have treatment or not. Me personally, I have to take regular medication as well as additional pain relief everyday. I tried to do without the pain relief for a few days but felt the symptoms really emerge. So I got no choice to keep taking the medal. All the best.
    • caufenkamp
      caufenkamp clem19079

      Posted

      I was wondering if the symptons were the same or not. I appreciate that. Now i just have a rough week ahead of me to find out if its the Secondary, or the Primary. Ive heard, that you can possibly negate the secondary, depending on what the cause is of course. Like i have said, i am overweight and i do smoke Djaurm Cloves. So im hoping thats the reason im going through this. Would be a kick in the ass to get me in motion to bettering myself. Well, honestly, all of this is so far.
  • ellen68007
    ellen68007 caufenkamp

    Posted

    Good morning to you. In answer to your question about the symptoms being the same in secondary Polycythemia. In my case they are similar. I get red hands and my complexion tends to be flushed. After  a hot shower my skin gets itchy. I feel tired however after I have my month,y B12 injections I do feel more energy. My respirologist changed my inhaler to the new one called ultibro and that helps along with the rescue inhaler that I don't use that much. Hope this helps. 
    • caufenkamp
      caufenkamp ellen68007

      Posted

      Ive been doing alot of research about all of this. I just get more scared reading everything. I see thatVera has a life expetency of 5-20 years, some sights say more. Im only 25. I would love it if i could live longer then 45. I would like to live until im 80 at least heh.

      But the one thing i dont see is the expecntancy of secondary Polycythemia. The doctor said that in the secondary version, as long as i keep doing bloodwork and letting, that this shouldnt change my life at all in living at least. Unless i have a stroke or a clot of course. But with careful monitoring and such it should be fine.

      Idk what im looking for to be honest. I just want my results, and i want to know if i have to worry about dying at a young age or not. I have Medical Anxiety if most of you couldnt tell. Its a bummer, to be 25 years old, and told that i have polycythemia, all because my hemoglobin is 20.8. Like the doctor made sure to say it in a way that tells me it cant be anything else.

      Again, thank you all for everything. Im sorry to be complaining like this. Im just scaerd.

    • ellen68007
      ellen68007 caufenkamp

      Posted

      It's ok to be scared. I was to. I think all of us were. On the sites I read we can live out a normal life. I also read that as well, the hemotologist in London, 0ntario Canada assured me that to expect a normal life expectancy. The main concern she explained to me is that with Polycythemia the blood is thick. She took me off the low dose aspirin and I was put on a blood thinner only because after a cat scan it revealed tiny little clots had started to form in my one lung. I have monthly B-12 injections which has made me feel less tired and has brought up my energy level. I also have to have blood work but only twice a year.  I am not afraid any more. I work and live a normal life.  With the right  treatment you will be just fine. You are not going to die! Keep in touch on this forum. It's an amazing support group that offers knowledge. Not to mention dealing with Polycythemia whether it be primary or secondary. Take care and stay in touch!
    • clem19079
      clem19079 caufenkamp

      Posted

      I was born with this affliction and now heading to wards my 5th bday. So what does that tell you. I smoked and drank like it was going out of fashion. I just couldn't understand why I was unwell most of the time. You have to realise that the advice your reading is from health professionals and it's always been their job to give the worst possible outcome. Do the treatment try to have a healthy lifestyle and you will be around to wind the grand kids up same as I like to do. The Internet is full of horror stories . Don't read them if your going to upset yourself. All the best. Ps. Your not complaining your just worried.
  • harrishill1
    harrishill1 caufenkamp

    Posted

    Hi, just read all the comments. Yes, I had red skin for yrs before being diagnosed with PV. Now that i'm on Hydroxyurea, my skin isn't red . But when I work hard weeding, or planting, my face gets very flushed red. I'm 74, and do lots of yard work, do zumba half hr weekdays, and one hr on sat. I can't do it every day when i'm busy with other things, but at least a few times a week. I just use the machines at curves if no zumba. It keeps me busy and it's fun talking with other women there. silver sneakers program makes curves free for those on medicare. I admit to having a dizzy day sometimes when I just rest, but not too often. My daughter tells me she knows a man 65 yrs old who says he has been diagnosed with PV since in his early twenties. He is still doing fine.

    harrishill 

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