The Unknown: An Update on Transplant

Hi guys. It’s been a minute & I wanted to update you guys (likely mostly just Grandma).

I’m at a point in my disease where we have ran out of the options that have been carefully studied and administered. In November, I broke through with a terrible infection for the 3rd time in six months. We decided that the medicine I came to NIH for, Ruxolitinib, was not working anymore. And so we put together a transplant timeline and as a Hail Mary, my doctor put me on a drug that is similar to the Rux but has been mostly untested in STAT1 patients. 

Since starting the drug and IVIG therapy in December I’ve had viruses, fevers, swollen joints, minor oral thrush & mouth ulcers and nearly constant nausea. But I have avoided an acute hospital admission. We are buying time with this plan, trying to hold off on transplant, which I have begged to push back 3 times now. If things get worse, we could be looking at September. 

But although I am in a lot of pain, it still does not compare to how the bone marrow transplant will obliterate me, likely keeping me from my normal life for a year or two, depending on complications. And so I remain indecisive, and I treat the symptoms but not the underlying cause, and I hope and pray I can stick this out as long as possible.

I am fighting so hard. And I will not stop.

These ding dongs need me ♥️ 


  1. De winkel heeft problemen voor mij opgelost, de service is zeer geduldig, dit is een perfecte winkelervaring. Goedkope UGG schoenen kopen Toen ik de laarzen ontving, vond ik het een goede kopie van de laarzen. Ik vind deze online winkel leuk,kopen dames ugg shanleigh deze laarzen zijn eenvoudig en genereus. Zeer tevreden met deze aankoop.

  2. This comment has been removed by the author.

  3. Aspect that is shared here in the blog is truly wondering me. I think such kind of topics for https://toptenwritingservices.com/ are the source of getting awareness with facts that are generally not known by us. Overall it is likable and surely appreciate by people also.

  4. Hello there,
    Enjoyed reading the article above you post, really explains everything in details,the article is very interesting and effective for me to accquire more knowledge.
    Thank you so much for your great information, It is too useful for me.
    Thanks again!

  5. Hey,
    Transplantation medicine is a rapidly evolving field. Living donor transplantation has become more common due to the shortage of organs. I have also gone thruogh a transplantation situation.


  6. Pretty! This was a truly noteworthy post. Thankful to you for giving these subtleties. jhalsamoviez

  7. Recently, I read about a study done on the psychology behind gambling for fun by (might be specific to me) Paraskevi Fragkiadaki and Nick Duffield from Neuroscience Research Australia, published in PLOS One ( http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0053175). The title caught my attention: “is Gambling for fun possible”.

  8. شركة ستار وود افضل شركة اثاث مكتبي في مصر يمكنك طلب من شركة ستار وود فرش شركتك بالكامل .