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Chronic Anemia - two dry tap marrow efforts.

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kp620505
kp620505

Hi All, I am a male in my 50's.  I had my 2nd hip replacement in April and all went well. I was full of strength and people marveled at my recovery.   ~ six weeks after, I lost all energy.  I've had three emergency trips to the hospital (17 nights) and 11 units of blood to overcome very serious anemia.  Iron levels are bare bottom and I've had one iron infusion plus several oral prescriptions.  This week I went in for a bone marrow aspiration and biopsy, and the doc hit a dry tap in two tries.  I itch all over.  Anyone else have problems after a joint replacement?  Symptoms wise, I closely match with Myelofibrosis.

I'm about ready for a case of lead poisoning if I don't find out what is wrong soon. I'm tired of being tired, and my family if sick of listening to it.  Any suggestions?

0 likes, 5 replies

5 Replies

  • anitalou
    anitalou kp620505

    Posted

    Hi - this must be very frustrating for you! This sounds like it might be something to take quite seriously - never mind family complaints,  take action for your health! If you're that exhausted and anemic and itchy, your guess of MF or some other myeloproliferative disorder (collectively known as MPNs or MPDs) is certainly one of the major options.

    Nothing to do with the hip replacement, MPDs as a group are very slow to develop and take years to accumulate to the point of causing more than vague symptoms. The cause/beginning of this disease (if that's what you have) was long ago. Although it's possible that the additional stress on your bone marrow to replace cells lost to bleeding during surgery made the underlying bone marrow problem more obvious.

    Good for your doc for thinking to do a bone marrow exam. Even with a dry tap (which is a failure to get an aspirate or "sucked up" liquid bone marrow sample), the BM biopsy should have some answer for you. Hopefully they also thought to do JAK2 mutation testing - this is found in a subgroup of MPDs and there are new drugs (not chemo and with lower side effects) that are JAK2 inhibitors and very useful. Ask about this.

    All those trips to the ER and so many transfusions says this (whatever it is) is at the level where it is actually dangerous - I hope you are getting excellent care as a followup!

    Please let us know how you are doing.

    • kp620505
      kp620505 anitalou

      Posted

      Thank you Anitalou. I've told a few people about this and it is clearly uncomfortable for them.  Being tired all the time (without a diagnosis) and lacking desire to participate friend functions sure looks like I'm a lazy buzz kill.  I've retreated to my house for the most part (and I have a very nice view), but that is where I feel comfortable.  Having pals online like you makes me feel like I'm making progress.

    • anitalou
      anitalou kp620505

      Posted

      Being in your 50s - that is, young smile from the point of view of most anemias, is probably not helping your friends and family accept your chronic condition (what ever its name turns out to be), tho to give them credit, that may be because they're a little afraid for you and are trying to cover it up.

      Getting a diagnosis will certainly help - then you can say to them "I don't feel well because I have "X" but I sure wish I could come." And, you can't treat your condition until you know what it is! If it does turn out to be MF, you can get excellent up to date info on latest treatments at the nonprofit MPN Research Foundation. It's a *very* active area of research which has been encouraging to many folks.

      If you're stuck at home, can you do something creative but not stressful that helps you feel like you're not just "spinning your wheels" while waiting? Photography of that marvelous view, take up knitting (yes, guys do!), plan your dream vacation to wherever... learn to brew beer so you can send your homebrew to parties even if you can't go?!

      best to you meanwhile.

  • harrishill1
    harrishill1 kp620505

    Posted

    Hi kp20505. You have the symptoms right. Yes, you could have mylofibrosis. My mom had it, but ended up dying from a weak heart. She was 86. My guess is that you could do well with the right treatment. They can do so much for cancers now than years ago. I hope you are diagnosed soon and are put into treatment right away. Best wishes,

    harrishill  

  • harrishill1
    harrishill1 kp620505

    Posted

    I kp620505: Hate to say it, but does sound like Myelofibosis. They do use Gene therapy for some types of cancer, so look into it online and see if there is a chance that you would qualify for it. I know it is just beginning as treatment, but it is worth trying. Not sure if your doctor would agree, but ask him/her just in case. Of course some countries are more into doing it than others. Not sure where you are located, but if my disease gets to that stage I will look into it.

    Wish you the best, harrishill 

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