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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

    Thank you for the Support everyone. Im still scaerd. Did an ultrasound, and they found a lesion on my Kidney now. Im not sure what that means. They also say that one of the blood test showed a single protien that was elevated. I hear all this news and all that i understand in impending doom it feels like. Dramatic yes. I felt fine a month ago. Now all this is crashing heh.
    • ellen68007
      ellen68007 caufenkamp

      Posted

      Goodmorning to you. As far as the lesion on your kidney, if there were any medical concerns I am sure your Doctor would have told you. If you were not told then ask the question. When I had my ultra sound there was a cyst that showed up on my kidney. My doctor said she was not concerned as there was no change from a previous ultra sound that I had done 3 years ago. When you do have concerns then you must ask the Doctor to have the answers you need to put your mind to rest. There seems to be a lot of tests done with Polycythemia. I wondered why so many tests. I was told that they were looking for the cause of my high red blood cell levels. They had to know in order to give me the correct treatment. They had to find out if I had  primary or secondary. After many tests it was confirmed I have secondary Polycythemia. Now I know. Now I know what I am dealing with. It takes a lot of time to get there so you will just have to be patient and let the Doctors do their job. Take care and keep in touch😉
  • peter98873
    peter98873 caufenkamp

    Posted

    Just read your latest posting.  Sorry to hear you are still under the weather.  When you visit your specialist you must really get into the habit of asking them questions on anything you don't understand.  They will always explain any problem to you and it will settle your mind too.  A lesion can mean anything really and if it was serious I am sure you would have received further advice from your medic.  A rise in a protein level can equally not indicate anything untoward but again do ask questiions of your specialist who is best situated to give you a complete answer, and put your mind at rest.  Try to think a little more positive and I am sure you will reap the benefits it gives.  Good luck.
  • caufenkamp
    caufenkamp

    Posted

    I'm slowly coming together with everything. I have heard some stories from a good number of people throughout this month. I appreciate each one of you for coming here and explaining a few things and supporting me. I know its not the end of the world or anything, It was just a hard hit for me. Again though, I would like to thank each of you. You have all been wonderful. 
    • ellen68007
      ellen68007 caufenkamp

      Posted

      Did you find out if your condition was primary or secondary? I know you were not sure. I would be interested to know. I was tested beyond test to see if mine was primary or secondary. After almost a year it was confirmed it was secondary. Keep in touch. All the very best to you.
    • caufenkamp
      caufenkamp ellen68007

      Posted

         Not yet, im still in the testing phases. Went in for my second blood test to see if i needed to drain. My HGB was 16.9, HCT was 47.2. I was happy to see they were in the normal still. I did my first letting almost 4 weeks ago now. The only issue i had was that my MCH, MCHC, MPV, EO%, BA%, and LY# was slightly elevated. My platlets were also down to 168. The doctor said this was expected with me just starting the polycythemia thing, since the spleene was enlarged from before i knew about all of this. She also had me on antibiotics from a clogged sweat gland. 

        So i'm still just waiting. Freaking out about AML and such haha. 

  • ellen68007
    ellen68007 caufenkamp

    Posted

    There seems to be a lot of testing before they come to a final diagnoses. I was amazed at how many tests. After a lit of frustration I was glad to know what I was dealing with. I also had blood letting. Keep me posted as to your testing and progress. It sounds like your Doctors are on top of this which is a good thing. As frustrated as I got I knew I was in good hands. I will be seeing my primary Doctor soon to have a CBC to see how my red blood cell level is. Will also keep you posted. Hope you are feelin ok.
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