1st Year

Hi dear friends,
Today is my 1st transplantation Birthday.  

This has been a year of accelerated spiritual growth.  It began with three months wiping off the chemo and its impact, opportunistic infections, physical ups and downs, hopes and disappointments… It was a year that I lived “isolated” while life went on.

I never stopped doing my three times a week PT, and suddenly I started being surrounded by a group of angels.  Pablo  H. helps me go from one place to another with so much tenderness and patience.  Claudia R, Claudia and Taly E and Nurit  P. jumped into my life for no specific reason, but they always visit me like fairies that sprinkle their dust and leave home with a special scent … Thanks to Elin’s idea, I started doing Yoga and there I found Angeles, the Yoga teacher, and a group of sweet women.   Of course I can’t do all the exercises, but I’m happy if I do 1/8th or 1/4th of them; at least I go out of my house for another reason that it’s not a medical exam or a doctor’s appointment.  Rafael is the physical education teacher that is with me twice a week for two hours each.  He’s been essential in accepting the disability which has been so hard for me to do. 
I’ve witnessed many people with Remitting Relapsing and Aggressive Relapsing MS experience miracle improvements after their transplantation, and even some Secondary Progressive ones.  I don’t know if it depends on how long they have been progressive, their disability status… I really don’t know, but I know for sure that Heidelberg University Hospital was the best facility I could have gone to and that fully myeloablative transplantation was right for me, and as HB’s Dr. Blank said, it’s impossible to know how I would have been now without the transplantation.

There’s still a year ahead in which I could experience improvements.  So, as long as it is hard to continue being patient, being surrounded by these new angels in my life, helps a lot.

I send bright stars to Mellisa, Elin, Phoebe, Bassam, Maryam, Toni, Monique, George, Carmel, Scott, Wendy and Eddie… We’re so distant apart, but so close at the same time.

Take care,

PS: Important statement: “No matter how many times I break down, there is always a little piece of me that says ‘NO, you are not done yet.  Get back up’”.

Unknown


Watch this link please.

https://www.youtube.com/watch?v=qX9FSZJu448

Almost 11 Months

The reason why I haven’t posted anything since May is because I haven’t experienced any benefit either.  This has been the most difficult year of my life.  I know that there are people in a much worst condition than me, but I can’t help it: I miss so much myself from not-so-long ago.  I wish someone knew what determines or what avoids the progression and feeling fatigued, besides what we all know: sleeping well, good nutrition, exercise, rest, avoiding stress and heat… Until May I went one step forward and two steps back, but suddenly everything “seemed” strange.  My physiotherapist swears that besides some days in which I was extremely fatigued, my disease has not progressed. I had tonsillitis, and became voiceless.  I experienced extreme dizziness. I couldn’t even stand up some days and they run the cranial nerve VIII test. It turned out I did have some deficiency (??)  I still don’t know why the dizziness comes back some days, but there are stable days too.  In order to eliminate any possible “something” in the brain, I had an MRI that showed even smaller scars than on March's, which according to my neurologist could translate in eventually some improvement.  He will attend Ectrims 2013 next month in Copenhagen.  Hopefully there will be anything new…

Happy springtime southern hemisphere and happy autumn northern one.

Take care

7 Months

This has been a very special month :o)  

I have been feeling much better, and  I sometimes realize that things that were difficult to do... I just did them! Some people tell me I look like before going to Germany.  

In a progressive, disabling disease, each reversal is miraculous! When I arrived I used a wheelchair, then a walker and now I've been able to use the cane! I walked barefoot in my appartment without holding onto anything (with tears in my eyes!) and I went walking on the elevator hallway with the AFO only holding sometimes to the wall :) 

I still have to avoid crowds because the hemato-oncologist said my immune system is still the one of someone with Aids, but I feel very optimistic.  One of my goals was to be able to attend to my daughter's school graduation ceremony on December using the cane and now I know I will! 

I asked my physiotherapist a report and this is it:

Much less fatigued.  Higher tolerance to 45 minute exercises

Right side of the body (the affected):

Diminishing spasticity (only some at ankle articulation level)

Fluctuating foot ankle articulation clonus that disappears with exercises.

Lower extremity:

She achieves triple flexion and is improving strength, active mobility and increasing repetitions

Upper extremity:

She achieves shoulder and elbow flexion with more tolerance to the exercise and increase in repetitions.
Hand: achieves fist with diminishing spasticity
Gait: Dynamic balance present with larger support base
Achieves walking without any technical support and fewer compensation of trunk, head and neck.

My recovery is also dedicated to someone very dear that passed away.  She must be very busy now arranging everything for her kids and her closed ones, but I know she is also very proud of me in heaven…

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

3 Months

This month has been one step forward two steps backward, but I'm doing better. 

It's easier for me to roll over in the bed and to stand when I'm lying.  I can stand up from a seating position without hand support. I can sit and support my right feet completely on the floor... I feel more upright. Sometimes I can do things that two minutes later I can't and viceversa. I am still very fatigued and tired.  I haven't gone out unless I have an appointment with some doctor or if  I have to take any exams.  I know I have to be very patient, but that's easier said than done... I sense it's getting better, veeeeeery slowly, but it is...

My hair is growing back and so do my eyebrows and eyelashes and that feels great. Well, I don't have too much to tell you, but I know each month will be better.  I'm very obedient with doctors: I take all my medicines, I exercise with my physiotherapist and I eat my meals :o)
We had the wonderful visit of Simone and Frank from Eisenach, and being with them, even for a very short time, was like a dream... 
Summer in Chile is very hot, but Santiago is a very beautiful city.
Take care...