2do año. (¿Último post?)

Queridos amigos:

Hoy se cumplen dos años del trasplante de células madre.  Son dos años en los que mi enfermedad se podría haber detenido.  Sin embargo, no fue así.  ¿Por qué? Nadie sabe...

Gracias por confiar en mí y regalarme esperanzas.

Y a quienes siguen a mi lado, gracias por regalarme su compañía, amor, tiempo y amistad.

Disfrutemos cada día.

Eternamente agradecida...

R. Karina

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...

2 Months

It's already two months after transplantation.  In fact, it was yesterday, but I couldn't write in my blog.  My mom's birthday was on the 25th and because I exceeded a bit with some food, yesterday I couldn't stop vomiting... Ok, it's my fault.  I accept full responsibility, but I felt awful...

Today I feel weak...

On the last month I started feeling more myself.  Previously, I felt kind of a zombie: half asleep, half awaken.  I've started thinking about plans for the future for the period after my recovery... and that's very possitive.
I've been slightly improving in some exercises, but lifting my heel 1cm feels like reaching the Everest! There's still a lot to do with physiotherapy and, I've been told, it's for life. 
I no longer have the Cytomegalovirus!!! 
I take this opportunity to wish you and your families a very happy 2013 filled with beautiful moments to cherish in your hearts!!! and also health, money and love that are always welcome!!!
With all my heart...

4th Week!

Already four weeks! I must say I feel more "alive".  People who have seen me before and see me again say I look better, and I feel better too!

I had an appointment with the onco-hematologist and he said it takes a year for the immune system to recover.  He also said the prophylactic medications are one year long after HSCT in Chile unlike in Germany where you have to take them during six months.  The amount of medications I take have increased...

I keep doing rehabilitation with my PT three times a week and do it twice a week with the assistant nurse.

I know the road is very long, but I'm hopeful... 

Yesterday I could even attend to Gabriel's B-Day that was beautifully and fully organized by the mothers of my son's kindergarten class.  I was touched by their generosity and their friendship...          

You see...? I'm still surrounded by blessings.

3rd Week

The rehabilitation process is very long, and I experience fatigue and nausea that don't help at all.  I have to be patient... even more patient.  

Days go by between physiotherapy, bathroom, medicines, food, cream... My whole body is peeling and even the palms of my hands!!! but the exantema is finally gone... Now the itchiness comes from the skin peeling.. Phew!

A promising future is on sight and there is where I go, slowly but surely.

I haven't been out, except for doctors and exams, but today my mom took me on an hour drive tour and It was very nice.

The mothers of Gabriel's kindergarten class are organising his birthday for next Saturday, because his real b-day is in January and people are on Summer vacations.  One of them is going to bring the b-day cake, another the piñata, candies, gifts for the kids, small chairs and tables, and so on... I want to publicly thank Joyce Berman for being so sweet, concerned, philantropist, and mainly a good friend.

As you can see, I'm surrounded by blessings.

Take care

2nd Week

One of the blood tests was positive.  It turned out that one of the opportunistic infections appeared and, though it's asymptomatic, I have a cytomegalovirus.  The infectologist told me that I shoud take Valganciclovir for a month, and that I should start immediately with it.  Nobody transmitted this virus to me.  It's a virus that many people have dormant in the body, but after transplants occasionally is activated. I'll have blood tests every week to check how is everything going on.

I started rehabilitation with my physiotherapist, following the physiatrist instructions, and though I feel extremely fatigued when I use the right side of the body (my weak side) I do my best to do all the exercises.  

My neurologist prescribed a sleeping pill, so I'm finally sleeping five hours plus a short nap in the afternoon!

Many friends have visited me and whenever I need to go to the doctor, some close friends take me to them... Also on the first days, I was never alone, because there was always a friend with me.  The Jewish Community of Chile hired a nursing assistant to be with me from 9 to 18 hrs, Mondays through Saturdays.  I try to do everything by myself, but she helps me a lot with: the medicines, food (I also take Ensure daily), stretching and exercises, putting cream for the exantema (that thank God is each day less itchy), and so on...

It's going to be a very slow recovery, but that's the way it is expected.

Meanwhile, I enjoy being with my son, my mom and my friends.

Take care.

1st Week Update

I feel so happy at home... 
My daughter left two days after I arrived and went to her school trip to Poland and Israel for a month. She claimed that if she hadn't seen me, she wouldn't have gone to the trip.  Luckily we had the chance to see each other... My son is here next to me and he keeps asking if I  already got better from MS, but he realizes I don't or, at least, not yet. 

I have been sleeping really bad: maximum 4-5 hours and not even continuous. As I was told, spasticity has worsened, but they say it lasts about 3 months.  

I already visited my onco hematologist who asked me to have some blood tests.  He said that if I had 38°C fever, then I should go immediately to the ER, because there's the risk of catching opportunistic infections. 

Today I was with my neurologist and it was so good to see him!!! Imagine the bond created after 16 years... I'm so lucky for having been supported by him in the transplant... I know many people around the world who don't count with their doctor's support. The exantema still itches a lot, and he said it might be the penicillin that I had to take until today. I told him I've never been allergic to anything and he said that was before but now I'm different. He said I may get better by Thursday and if I still have itchiness next Monday then I should have another blood test.  Let's hope it's that, because I'm really suffering... He told me I should be patient, because things are going to be very slow now, but he was happy I already went through the most difficult part. 

The physiotherapist came to my house and measured my muscles.  I definitely lost muscle mass in my right side while being at the hospital for a month.  He gave me a list of exercises that I should do Tuesdays and Thursdays, because he will come home Mondays, Wednesdays and Fridays.  He also asked me to press a stress ball all day long and play with PlayDough...

I'm tired, because I don't sleep, because of my itchiness, because of the chemotherapy that will take months before it leaves my body...

My son just told me: "Mom, don't leave me again.  You can only leave the country if its with me"... And I promised him it'll be that way.  It feels great to be here...

The Return

Saying goodbye to our loving neighbours Jorge, Veli, little brave Matthew and precious Liz was very difficult and sad too. It was a very stressing morning and I was also worried about the long trip, because I had vomited the night before and as you may guess, I'm not feeling well at all.  Anyway, we will miss you Mexico - Bulgarian friends. Sharing two months and a half so many difficult times, while feeling you are supported by someone very close was priceless.

The flight from Frankfurt to Paris was very short. I wore a mask and we were taken in a kind of special shuttle with the wheelchair to station x where we met someone else who took us with another wheelchair up and down some elevators and all the way to other station and then we waited almost an hour for another shuttle............ The French airport was a total mess.  We were taken to where we needed to go maybe two hours after we arrived.  When we finally took the plane to Chile, it was wonderful... The flight was very long, but I managed to sleep five hours, while Nachita helped me with everything as usual.  It was a very long fourteen hour flight where we felt how each second passed by VERY SLOWLY.  

When we arrived, we were told we had to wait until all the passengers got off the plane, because people in wheelchairs had to be the last ones... 

We couldn't believe we were in Chile... It was a dream come true.  A lady took me in the wheelchair and we were so emotional for listening to the Chilean accent... 

Anyway, we were taken down the aisle to customs and when we just turned out of the plane there was my mom, Nicole and Gabriel!!!!!!!!!! It was so impressing!!!!! We hugged each other and bursted out crying!!!!!!!!!!! They were accompanied by some detectives and managed to get almost in the plane!!!!!! (this is not done in Chile).  I saw Gabriel and I told him how big he was while he replied that he ate everything :o) He also gave me back a small penguin toy that I specially bought for him (he thought it was mine and that it was very attached to me).  I had asked him to take very good care of Bobby (that's his name)... Well, he gave it back to me and said he had taken very good care... Awwwwwwwwwwwwww...

Then they had to go out and we proceeded to customs.  Nachita picked up our bagagge and when we went out.... I was met by my two sisters who kneeled down to the wheelchairs's level and cried so much (mee too) while saying that they loved me so much...... Greeting Nachita's sisters (Gabriel's half sisters) was also very emotional and giving a big hug to her mom  and dad too...... There was also Kevin (Frank and Simone's son) and Juanito (my sister Ilona's boyfriend plus my beautiful nephew Florencia.............. 

And there it was....... having to say goodbye to Nachita.  OMG... I felt too many strong emotions in a short time... 

I must say that there's, absolutely, no place like home.  It is wonderful to be here..... I had to share this with you, my friends. 

I hope you're doing fine and that everything's alright with you.

A new stage of this treatment begins, but it'll be close to my loved ones, at home, in my language...... Oh, how good that feels...

Loves,

K

Last Day in Germany

I almost didn't write anything today.  I had my first day out of the hospital after almost a month... and I'm very tired.

Tomorrow we'll fly back home so I think I'll take a rest from the blog for a while...

I want to tell you that it's been wonderful to read your comments cheering us up throughout this very special journey.  Thanks for accompanying us... This was the best way to make all of you know what was going on here...

I'll write here whenever I have the time, the energy and any news!  

Thanks again, Jewish Community of Chile.  This dream wouldn't have become a reality and a new chance for my life, if it weren't for you,

Good night.

Loves,

K

D+20!!!!!!!!!!!!

Finally we are back at the guesthouse!!!!!!!!!!  It's like being closer to home... because we are going to Chile this Saturday!!!

Thank God I did not have any fever!!! so when Prof. Ho and his colleagues went to visit me I was smiling from ear to ear and he noticed it, because he said: "now you're smiling! It shows that you're feeling better".  I immediately said: "will I be discharged today?" and he said yes!!!! OMG, I feel happy!!!! We had to wait until 17.30 when the Dr. who spoke Spanish handed me many prescriptions we had to buy and a long instructive with how to keep on taking all the medicines for the next six months.  I really have to study them now.  Our neighbour Jorge picked us up in his car from the hospital and took us to the drugstore... Nachita will have to pick up tomorrow some medications that were not available today.

I can't tell you how much I cried when Jorge took this photo:

We especially made this T-shirts for the ocassion... and we wanted so badly to get to the day where we could wear it... and though it took soooo long... the day arrived!!!

I will go to study about my medications...

Loves,

K

D+19

Thank God the cultured blood test is negative until now, so I could finally leave the hospital tomorrow evening, that is unless I have no fever today.  I had 37.4°C earlier, but apparently that's no fever for Germans... (good thing!).  Dr. Ursulla's theory about having stressed my body too much sounds quite reasonable.

I met today two other nurses that helped me a lot... and one was Israeli!!! We spoke Hebrew and it was great!!! I've practiced all the languages I speak: Spanish, French, Portuguese, English and even Hebrew! They want to convience me to start learning German, but besides some words, I refuse to do it... It will take some time before I start forgetting everything that I've lived here. On the long run it's going to be good, but not now...

Tina the physiotherapist was here again, and I tried to move a bit... but I'm still exhausted.

Please pray again for me so as to have a good night sleep, without you-know-what....

See you tomorrow.

Loves,
K

I know I don't look so pretty, but that's the way I am now...

D+18

Hi again...

I couldn't kept my word and yesterday was also a very long night with fever (39°C), blood taking, antibiotics and paracetamol.  They said the blood culture will take 24 hrs. to verify if there's any bacteria or germ around, though the Dr. said she thought everything was because even if I'm resting, my body is fighting a lot and that's why I could have got the fever.

Anyway, we'll have to wait until tomorrow's results.

Now I'll be discharged on Thursday... Anyway, it's better to be taken care of here.

I hope you have a very good night sleep.

Loves,

K

D+17

Since I didn't have a good night sleep again, Prof. Ho and his colleagues decided I should stay here until Wednesday.  I think it´s quite reasonable.... 
I have a new neighbour from Iraq.  She's a nice 24 year old young woman with cancer.  
I made up my mind and tonight IS going to be a much better one.  I promised that to myself.
So, don't stop sending all the good vibes and prayers that you can...
Loves, 
K

D+16

After being the whole day with antihistaminics, I've slept most of it.  They "painted" me with some other cream, "lotio alba aquosa 200g" which made my body look pink instead of bright red.  It did sooth me, but tomorrow at the guesthouse still puzzles me as to how am I going to arrange with everything, even with going to the bathroom....

Nachita was here in the morning and she brought me some clothes and the wheelchair for tomorrow and she went back to the apartment in order to clean it thoroughly.

That's for today.  I'm exhausted.

Loves,

K