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Frustrated

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ellen68007
ellen68007

Hi to my super helpful friends on this forum. Went to London today to see the Hemotologist for my final results. As you know I had to have another bone marrow aspiration as first one did not give enough for her to complete her test. I was told today the results were just fine. The test was to see if my bone marrow was producing to many red blood cells. If that were the case she would have givin me a treatment to stop this over production of red blood cells. Said "this is a puzzle". The Doctor in my home town after a zillion tests said "this is a mystery". My last test that was the pulmonary lung function test was not there for her to review. I just had that test Monday. My blood levels were higher today then when I saw her two weeks ago. 65. She said this is not a blood cancer. Said she is sending me back to my primary Doctor. Said I am not to have any more phlebotomy's. Said she feels (without the lung test) she feels my body is producing extra red blood cells due to lack of oxygen due to my COPD. She is certain without the lung test this is the problem. No treatment offered other than to stay on blood thinners and my B12 shots. Just soooo frustrating because my levels were high. I know it's secondary but no treatment? I just feel so lost now. Guess I just have to wait for that final lung test to be available. My hands were so red today and my face as well. Very confused!

0 likes, 5 replies

5 Replies

  • peter98873
    peter98873 ellen68007

    Posted

    Hi Ellen.  From what you say it seems your medics have ruled out PV and cancer, which must be good news.  Neither is an asset.  High/Low oxygen levels can quite easily be referred to cardiac/lung disorders which are more favourable to successful treatments.  My wife's family line suffers from a rare heart disorder which required her to undergo tests to find if she was affected, but fortunatlely she was cleared.  Others in her family were not so lucky but they still carry on regardless.  Heart and lung conditions which rely on oxygen to work well, can pose quite differing disorders that need specialist diagnosis.  These are better to successfully treat than PV will ever be I suspect.  You have stood up to everything very well and you must continue to do so with your doctors support.  Frustrating, of course, but keep searching for the information you need, it is there somewhere!
    • ellen68007
      ellen68007 peter98873

      Posted

      Thankyou Peter for your reply. I have been very patient with all of these tests since July. I understood when the Hemotologist explained due to my COPD that was confirmed in the cat scan that it's an oxygen problem and certain once the test results for the pulmonary lung function test is available she feels this very well could be the problem. She said my body is producing extra red blood cells to try to supply oxygen. I am just confused when she requested no more phlebotomy's. I did ask her why but her answer to me is a blurr. There was just so much to absorb. My concern now is with my red blood cell count being so high and no treatment to bring it to normal then how dangerous is it to not have the phlebotomy's. What happens if my counts keep on rising? How dangerous is this going to be? All I was offered was to stay on the blood thinner Xarelto and the Vitamin B12 injections. That's it. Just concerned about the high levels that were higher yesterday then two weeks prior what I saw her. Any input would help.
    • peter98873
      peter98873 ellen68007

      Posted

      I would suggest that your medics will not prescribe any more drugs until they know just what they are deaking with.  A wrong calculation could pose more problems for you so sit tight as they will surely come up with something more positive. A high red cell count is mostly caused by  the heart pumping more oxygen to compensate for  a failure elsewhere, mostly in the heart or lungs but there are of course other disorders too.  I am sure the docs will be just as anxious as you to know what is your difficulty so keep in touch with them, they appear to be interested in you.  A red cell count can go pretty high before medics get excited about it.  Could really be something quite simple but difficult to diagnose.  All will be revealed before long I'd wager.

      Wish you well.

  • paul250360
    paul250360 ellen68007

    Posted

    It must be very frustrating for you Ellen but for any of us PRV sufferers to offer advice probably would be dangerous. It sounds like you are PRV free which is great news. The Xarelto will prevent blood clots from having a high red blood cell count.

    Hopefully your specialists (not us !) will come up with a treatment that will reduce or clear up your symptoms. l am amazed that it has taken 8 months to get to this point though.

    cheers

    Paul

    • ellen68007
      ellen68007 paul250360

      Posted

      Thank you Paul for a reply. I am as well amazed that all of this started in July after a routine blood test. I have had so many tests including the repeat of the blood test that was sent away for evaluation that took forever to come back and also a repeat on the bone marrow aspiration. Mt hometown Sr. Said "this is a mystery". The resident Doctor working with the Hemotologist said "this is a puzzle". This is what is frustrating. After all of this I don't know!!! No treatment to reduce my high red blood cell count. Makes me wonder now just how high it will go without treatment. The Hemotologist will be sending her report to my home town Doctor. I am still waiting for the results of the pulmonary lung function results which was my last test. I do have COPD. I will at least keep you posted as much as I know I won't be able to get advice from here. It however makes me feel better to at to share. Thankyou very much for being there!
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