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I just wanted to write to share some good/interesting news, in case it might be relevant for anyone here struggling with post-transplant anemia. I had my second transplant over two years and I've only ever been able to reach a hemoglobin of 9 with Epogen since, even though my kidney is functioning well. It's been a very long, frustrating journey, with a bone marrow biopsy and multiple consultations with different specialists. My B12 and folic acid levels were always normal too. I did a 23andme genetic testing kit a few months ago and found out I have the MTHFR mutation, which means my body has trouble converting folic acid to its usable, methylated form, folate. The blood test for folic acid can be normal and you can still have low folate- I believe this is true for B12 too and other B vitamins. I was curious about this mutation because I was put on 1mg a day of folic acid in 2015 and became seriously ill from it, and my doctors didn't believe me because "folic acid is water soluble and harmless," etc. It turns out in people with this mutation, the folic acid just builds up and becomes actively harmful, since it can't be used. People with this mutation also tend to have high levels of homocysteine, a harmful protein that can predispose you to heart problems by damaging your blood vessels. We did a test a few weeks ago and sure enough my level was high. I started a methyl-folate and methyl B12 supplement about a month ago after learning all this and I had my hemoglobin checked on Saturday, and it was 9.9, literally the highest it's been since right after my transplant. This genetic mutation is not routinely tested for, and for people with complicated anemia, it should be. I feel hope for the first time in two years, and I feel proud to have figured this out on my own without the help of the doctors who failed me. Sorry if this seems like a bitter note to end on, but my point is that it's so important to advocate for yourself and do your own research, as I'm sure most of you know. Doctors don't know everything, and if they're not curious about your suffering and investigating it (mine were fine with me existing at a hemoglobin of ~8.3 the past two years, exhausted every day, as long as my kidney function was good!), well, someone should be.

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  • I suffered with the same thing for almost 4 years, before the doctors finally gave me an infusion that has brought my hemoglobin level from 7.1 back to 12. on the last test. Of course while I have more energy than I did have, I still get tired easily and if I push it like I have been since Harvey I get exhausted like I am today. We are hoping that once we get our house rebuilt (hopefully next month) and get back home things will slow down once we get stuff bought and moved back in.

    Like all who have been through this know you just have to keep moving and take one day at a time as we are blessed to still be alive and kicking even if we do not kick as high or as long....

    • I’m so sorry to hear about your house, I can’t imagine how stressful that must be. My anemia ended up getting worse after I posted this, still hovering around 8. Was it an iron infusion you got?
      • Yes, it was a iron infusion. While the hemoglobin is staying at 12, some of my other numbers are starting to fall which they are going to watch closely. Life is still good, it is just some days are tougher than others.

  • Yay Hilary!!!  Or should I say Dr. Gardiner?

  • Wonderful news!  You have not only enhanced the knowledge base of members here, but have opened the eyes of the medical community involved.  I am so glad you could persevere to improve your own health. 

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