The bear went over the mountain…

August 10th 2016

Alexx here. My mama says its time for an update…so here ya go. Please excuse me for not being as eloquent and/or verbose as usual, I’m sleep deprived.

She was transferred back to the BMT unit one week ago. Her medical issues were becoming too complex to manage on the rehab floor and it was safer for her to come back to the BMT unit. She’s bummed but understands that this is just a bump in the road and that she needs to forge ahead with her warrior strength.

Medical issues

1) BK virus—its still in the urine and is now detected in the serum in very low levels,(trending down as of today); treatment is still not indicated at this time. The medication they could potentially use is called Cidofovir but they want to avoid it because it is toxic to the kidneys

2) Hematuria–she still has blood in her urine with occasional clots. This is primarily due to the BK virus. They consulted a wonderful urologist who believes that this is exacerbated by the foley catheter causing constant irritation. So the foley catheter was removed and she is doing well without it.

3) Acute Kidney Injury: Her creatnine (which is a number that is reflective of kidney function) started uptrending 2 weeks ago and then took a big jump. They involved nephrology and urology at this time. She developed left sided pain and an ultrasound showed that there might be a blockage in her left kidney, something called hydronephrosis. This could be from blood clots or inflammation of the bladder, all secondary to the BK virus. Yesterday she went for a cystoscopy where they shoot dye up towards the kidneys to look for blockages. It showed that both kidneys had partial blockages, the left more so than the right. This is from inflammation of the bladder causing thickening of the walls and then blockages. They placed 2 small plastic stents from her kidneys to her bladder to help relieve the blockage. Hopefully the Creatnine will start to go down over the next few days. She tolerated the procedure well.

4) Pneumonia: She developed a cough a week ago, no fever or shortness of breath. Since it lingered they did a CT Chest which showed a mild pneumonia on the right side. She was restarted on antibiotics and should resolve with a 7-14 day course.

5) HLH/CMV/EBV—thank god these numbers all remain negative

6) Bone Marrow: she is still requiring transfusions but overall they are starting to see signs of recovery; she received a few days of Granix which is an injection to boost her white blood cell count

7) Immunosuppresion: still waiting for this to recover, this will take the longest.

So overall she is stable and hopefully we can resolve these lingering medical issues and get her home soon!

As always…photos!


Sleepy Husband



13 thoughts on “The bear went over the mountain…

    1. I am at home still recuperating. I have to go into NYC at least two times a week for blood,platelet,and fluids depending on the numbers of several blood tests . I am having PT and OT several times a weeks to gain enough strength to walk again. Thank you for asking.It is great being home with my family. Yesterday my husband took me up to the boardwalk for a lovely walk by the ocean.

      Liked by 1 person

      1. Hi. I hope you are improving everyday. There are a lot of us watching and waiting to hear your continued progress notes.


  1. How are you doing? I have been accepted to go to Isreal, I will have to rasie the money. We are the same age and about same disability. Was it worth it? I know you have gone through hell. You are in my thoughts and prayers. Can email me if you wish. xoJojo


    1. Hi Darlene, wow…where to begin. It certainly has been a roller coaster ride. I am still fighting to regain my ability to walk. My progress is so tiny I don’t recognize it as progress. But when I look back several months or more I have hope. And most importantly, I have not gotten worse. Walking and bladder are my two main issues. I joined the MS gym online with Trevor Wickens. I think it has great value. He really gets it. I have done so much physical therapy but feel that something is missing. Something very small and isolated. The body mind connection. I also work out in a pool twice a week. It is my happy place. I actually feel normal in the pool. I can walk and balance. I actually feel very blessed with a loving and supportive family and friends. I am happy I had HSCT. At least I have a fighting chance. Thanks for asking.


      1. Andrea, thank you for answering me. I am sorry about your inability to walk – is it pain or your brain not sending the signals to your legs? if it is your brain, it has been proven that we can make new connections and hopefully yours can begin to make new connections. They say water therapy is the best even though I have not attempted it myself. I guess I have to go back on your journey to find out what about your MS prompted you to get HSCT and to find out from you (hopefully) what has changed for the better in your symptoms.

        Praying for your continual improvement.

        Darlene McCarthy


        1. Hi Darlene, have you researched HSCT? It took me a year to research it,vet it, and get a date. There are many Facebook group you can join and read about individual journeys. You have to request to join each one separately. There one for Mexico,Russia, and Israel. There is also a general hematopoietic stem cell transplant group and one for PPMS. YouTube also has videos of individuals who have had HSCT.


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