6 Months

My daughter noticed I was feeling better just when I got home after the hospital last month.  I've been taking  the antibiotics and I'm getting stronger.  People that haven't seen me in a while say I look more "ambulatory".  I even dared to take a cab the other day (with the walker) and went to a meeting with my son's school teachers.  Then I took a cab and came back home.  I only live two blocks away from school... but I did it!  

I'm working hard with my physiotherapist and although the antibiotics make me very dizzy, I realize I get better each session and this has been a tremendous relief for me...

I'm feeling optimistic.  I know the recovery has ups and downs, but now I understand the post transplantation dynamics.  

I think it's time to share with you the illustration made by Phoebe Scopes (who also went HSCT) that perfectly describes the situation I'm going through.

Thanks Phoebe!

Everybody take care

5 Months

While I was slowly experiencing improvements, during the last three weeks I started feeling extremely weak and fatigued.  I fell many times and couldn't sit up.  I had many bruises all over my body and I hurt my ribs in one of my falls. I became very depressed as I couldn't do the small things I had achieved with my persistance and my physiotherapy sessions... I started feeling so disabled like never before.  I couldn't go anywhere.... 

I had a brain and a cervical stem MRI with no new nor active lesions.  Some of them were even smaller. That was great, but what explained the worsening of symptoms?

I went to see the onco-hematologist and he asked me to have some exams. I turned possitive to Clostridium Difficile Toxins A and B.  It is an opportunistic bacteria that was activated because of the long use of an antibiotic called Ciprofloxacin.  I've already been 5 months using it, following Heidelberg's instructions.  The doctor suspended it right away and  hospitalized me.  

I spent last night in the Clínica Alemana waiting for the oral Vancomycin.  The immunologist said we had to wait and see how welI it was tolerated, but if everything went well and I didn't have high fever, I could go home.. 

I am glad there was something wrong, because I know it will be fixed and I'll start improving again, but I'm still very depressed.  I never thought I would be this disabled.  I have to use an AFO for the right foot drop, an orthesis for my right hand, another AFO to sleep, I'm still taking Ensure supplements, many medications...
I wish I could erase the word Multiple Sclerosis from my head for just one day... hopefully I'll get better with this new antibiotic and I'll start improving again as stem cells still have a lot to do.

This was the view from my window... I wanted to share it.

Take care

4 Months

Many people thought I would get off the plane walking by myself and many still think I get better every day, but unfortunately it's not like that. It is taking a lot of patience, physical rehabilitation and the support of my family and friends, because it’s not easy… I’m still very fatigued and it hampers easy tasks such as getting up from bed, brushing your teeth, and so on.

However, I have had some improvement:

No more electric pinching in my soles.  It was hard to fall asleep with that…

I went twice to the movies and I didn’t have to rush into the bathroom

I sense all the flavors.  No more sour sensation of liquids.

I can lift my right arm up to my head

I gave the wheelchair back and now I’m using a walker, which strengths my leg muscles

I wore sandals and even could give some steps without holding onto anything!

I had the visit of my brother and his wife from Israel, my uncles from the US and my aunt from Spain.  It was a wonderful month surrounded by a lot of love…

Patience, exercise and love.  That is the clue...

Take care