Thursday, April 30, 2015

The first couple of days

My first experience in the CTCI Clinic was interesting and good. I met the staff and
then had my first appointment with Professor Slavin. The staff is great! Very friendly
and welcoming. Prof. Slavin is very warm and a kind man.
The clinic is small. From what I can tell, Prof. Slavin's office, three treatment rooms,
one being the head nurse's office also, Ruth's office and waiting/reception room. I am
sure that I will learn much more about the clinic as the next few weeks go by and I will
add to the blog.

Prof. Slavin asked me lots of questions about the history of my MS. Such as exacerbation's
and the dates. It would be a good idea to have had these all written out to bring to the
appointment. These facts are in in my head though!
He did a through examination, checked all my lymph nodes and neurological functions. 
The tests were very similar to what a neurologist does in the US. Prof. Slavin then got
out his camera and took a video of me doing some of the tests again and had me walk down
the hall and back to him. 

I was given two choices in treatment. MSC and HSCT. I, of coarse chose HSCT! That is why
we are here! He would like me to have MSC after the HSCT, but it is much more expensive. 

Today is Wednesday and I saw Dr. Nadir today, before I went with the nurse to a hospital
to have my Picc Line put in. He was all business and no smile. He examined me and listened
to my heart and lungs. I could tell by a couple of the questions he asked that he had gone
over my records very thoroughly. I am happy that I brought hard copies of my scans, 
both MRI's and CT scans, so Dr. Nadir could look at the real scans for himself and not just
read the report from the radiologist that read them back home.
The Picc line is put in to your arm here. SEE PICC LINE PICTURE 
I believe it is the only picc line that I will get.
It was placed by making a small incision in my arm above the bend in my elbow. Then the line
is inserted using live video/x-ray on a very high tech piece of machinery. This is a huge, 
very modern x-ray machine that I am sure is used in the US for many procedures. One thing
that I did notice is that the Israeli hospitals don't have as much waste as in the US. They
used sterile drapes, but they were cloth that could be washed, they don't use alcohol wipes,
just alcohol in a bottle with cotton balls. All of the dressings for my pic line were the
same as the US though. In sterile wraps. The doctor and his assistants were very careful
about infection control, which I was very happy with. I don't feel that there is anything
to worry about here!



Friday, April 24, 2015

We are in Tel Aviv!!

We arrived safely in Tel Aviv. What a long flight! Bozeman, Montana to Denver, Colorado, Then on to Newark, New Jersey and our final leg, Tel Aviv Israel. The flight to Tel Aviv was 11 hours. Sleeping on the plane was close to impossible. Marilyn and I both had trouble getting comfortable and falling asleep.

Both of us have a little jet-lag this morning. Upon arriving at Ben Gurion International Airport, we had to get our passports stamped and a Visa was issued. After we got our luggage we looked everywhere for the taxi that was supposed to be there. We never found the taxi so we had to get our own.

Lesson #1 in Israel - Make sure the taxi driver turns on his meter. When we got to our hotel, The Vital, I tried to pay the driver with my credit card. He shook his head No. He said $172. I almost fainted! Marilyn knew that he meant Shekels! We settled on $50 US dollars. Yes, we are naive. When we mentioned this to the very nice girl at the front desk, she said, in a nice way, that we got ripped off. You MUST insist that the cab drivers turn on the meter!!

The Vital hotel is very nice. Our room is small, but comfortable. We have two twin beds and the bathroom does have a shower/tub. I was told that the room didn't have a shower, but that was incorrect. We have an electric tea kettle so boiling water for tea will be easy. We were cold last night, the air conditioner works very well so we'll be asking for extra blankets!The service here at the hotel is 5 star, we asked for blankets, they were brought almost immediately.
As you can see, our room is a little messy.



The breakfast that is included with our room is nothing short of amazing! Marilyn will be writing about it! She is the foodie! My favorite morning drink is Chai tea with honey and almond milk. So, the first thing we did last night was to buy almond milk and honey. I brought my tea bags in the suitcase. After seeing the breakfast, I didn't need to bring all those tea bags.
View from Breakfast


The big part of today was going on a free tour of Tel Aviv. First stop was the diamond headquarters, then to Jaffa. They drive very fast here and don't pay attention to the painted lines on the streets!
It is a little scary.

Marilyn just got back from working out at the gym that is included with our room. She said it is very nice and it has great classes and equipment.

The Business Lounge, which is also included with our room is great. I think we will
be visiting there everyday! Note the coffee/espresso machine and the treats! Marilyn is in
coffee heaven.



We explored the mall that is attached to the Vital hotel. It has a natural food store and we recognized many of the brands that they have, but we can't read a word! We ate at the coffee shop last night there and the sandwiches we had were very good. There are small clothing stores, electronic shops, a cell phone store and even a Toys-R-US in the Mall. We have not found a laundromat yet.

More to follow...........


Sunday, April 19, 2015

HOPE

hope
hōp/
noun
  1. 1.
    a feeling of expectation and desire for a certain thing to happen.
    "he looked through her belongings in the hope of coming across some information"
    synonyms:aspirationdesirewishexpectationambitionaimgoalplandesign;More
  2. 2.
    archaic
    a feeling of trust.
verb
  1. 1.
    want something to happen or be the case.
    "he's hoping for an offer of compensation"
    synonyms:expectanticipate, look for, be hopeful of, pin one's hopes on, want;More

I just Googled the definition of hope. I've had many people ask me why I would put myself through Chemo and go all the way to the other side of the Earth to do it. My answer is HOPE. It is such an amazing feeling to have hope for a change! So many things have happened to make going to Israel a possibility. I never dreamed that this treatment was possible. I thought that when my leg stopped working that I would be in a wheelchair someday. That still might happen, there are no guarantees that having HSCT will work, but the odds are amazing. My goal is to stop the MS, any symptoms that start to get better will be a bonus! 

I also have hope for other people that have MS. My hope is that everyone that wants to have HSCT can have it. I want everyone to know that there is a treatment that can stop this disease. 

As I am packing for Israel, I feel so very thankful for my husband, my parents, our two son's, friends that stand by me and many other things. Our youngest son's girlfriend, Brianna, cut my hair this week to get ready for Chemo. It is a little shocking, but so easy to get ready in the morning! 





Friday, April 10, 2015

Countdown to lift-off: 12 days until we leave!

My test's are done. I need to go to the hospital and get all the hard copies and cd's, but the hard part is over.  I am getting my packing list ready and a list for my amazing husband of all the things he will need to take over when I am in Israel.

My husband is my number one supporter!  He will be taking care of everything while I have my HSCT. Not only will he be working, he will be taking care of my parents, 3 dogs, one cat, and all of the things that I do everyday. To top it off, he will have to take care of me when I get home!
I am so thankful for my husband and family!!

I'm blessed to have a very close friend, Marilyn,  that is going with me to Israel. Marilyn is taking 6 weeks off work and putting her life on hold to take care of me during my treatment. Words can not express how thankful I am for her!!

Marilyn and I are members of P.E.O.  At our meeting yesterday the woman surprised us with a going away gift!


As you can see in the picture, our gift has all of the necessary things for our plane ride!  The chocolates are from La Chatelaine and the caramels are from Bequet Caramel. I am only pointing out where the candy is from because both of these candy company's are right here in Bozeman, Montana and we are very proud of our local businesses!  I am predicting that the candy won't make it to Israel. It will probably be eaten before we even get to Newark. The women in our P.E.O chapter are very special friends and I am so thankful for each and every one of them!



Tuesday, April 7, 2015

Getting Ready to Go

There are many things to do when getting ready to travel to the other side of the globe. Finding the right clothes after checking the weather in Tel Aviv for the time of year, getting plane tickets, hotel reservations, making a to-do list for your husband because he is going to be home without me for 6 weeks with our oldest son, 3 dogs and a cat, etc...  This is all getting done a little everyday. As I do one thing, there is something that I didn't think of that just pops up!  

The big part of getting ready to go are all the medical test's that I have had to get done. Here is the list that Ruth sent me:

Total body CT (head, neck, chest and abdomen)
MUGA- (Multi Gated Acquisition Scan)
Dental assessment 
Pulmonary function (profusion and lung capacity )
ECG
Blood tests (This is a whole different list - they took about 10 huge vials of blood)

I had to have my neurologist order all of these. Yes, this is a very long list!! The total body CT was with and without contrast, so I had to have an IV put in. Thankfully I was able to have the MUGA after the CT so they didn't have to do another IV. 

All of these test results will be emailed to Tel Aviv and then I will carry them with me on the plane. We leave on April 22nd. The clock is ticking.... 
                                                                                Retro Alarm Clock Isolated Stock Images - 26755954



Monday, April 6, 2015

We are going to Israel!!

As I said in a previous entry, I emailed application letters all over the world.  I only received responses from Russia, Chicago and Israel. Russia put me on the list which is about a 2 year wait.  I don't have 2 years to wait.  Chicago asked me to come for an evaluation (that story will have to be in another post).
The email that I received from Israel came from Professor Slavin himself. It was probably a form email, but it sent me in the right direction!  He said that he had forwarded my email to his assistant, Ruth and that she would be contacting me.  I'm not one to follow directions, so I promptly emailed her!  That was the start of more emails that I can count!

Ruth instructed me to email all of my previous MRI results I had to her. She sent me forms to fill out. I also had to get a new MRI and get those results in. I had the new MRI in January 2015. At this time, I thought that we had until late in the year to get ready for my trip to Israel. I was wrong about that!!

My husband and I went on a trip late in February. We drove down to Denver to see family and then stopped to see family and friends in Arizona and Nevada. This was a long road trip over about 2 weeks. I received an email from Ruth, Prof. Slavin's assistant in the middle of our trip. Prof. Slavin is the doctor in Tel Aviv Israel. The International Center for Cell Therapy & Cancer Immunotherapy (CTCI)

The gist of the email was this... They have had two dates open up and Ruth will accept the first people that respond.  Needless to say, I responded immediately on my cell phone.  I took the second date of April 26th, 2015. Having a real date for my HSCT was a very strange feeling.

I received more email from Ruth over the rest of our trip. Prof. Slavin wanted a video of me walking. My husband took a video of me walking in a parking lot in Las Vegas, we sent it. She needed me to get my neurologist or internist to order test's that I need before going. I made phone calls while my husband drove. We got home around February 20th. This didn't leave me with much time to get ready!

I am going to Israel to get a second chance!!





Kris's Non-scientific Definition of HSCT

After reading article after article with the definitions of Hematopoietic Stem Cell Transplantation (HSCT) I was overwhelmed. So, here is my definition. My definition might change as I go through it in a couple weeks!

In MS, the immune system attacks the nervous system. It thinks that the nerves are a disease and that it is protecting you. No one knows what made the immune system think that it should attack it's own body.  

Stem cells are removed from the body through a port in the jugular vein, or the bone marrow from the hip. I believe this just depends on the doctor doing the procedure. After the stem cells are harvested they are frozen.

The next step is Chemo. From all of the blogs and webpages that I have read, it is not a walk in the park. I will lose all of my hair and get sick. I guess that I will need to go shopping for some cute hats!  The Chemo wipes the immune system clean.  Like when your computer has a virus. The hard-drive is erased.  

After the immune system is wiped out, the brand new, clean, stem cells that were taken out before the Chemo, are put back in the body.  I compare this to getting new software on your computer. The new stem cells will help rebuild the immune system.  

The hope is that the new immune system will not attack the nervous system again. The odds are very good that HSCT works. It has worked on many people!!  

For a much better, very scientific explanation of HSCT, I encourage you to read George Goss's blog: http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html


Thursday, April 2, 2015

The HSCT Article

So, I saw an article about Stem Cell transplants for MS. I know that I saw it online somewhere, but can't remember where!  MS brain, you know :)

Anyone that knows me is aware that I read everything about every subject that I find interesting. So, this subject hit me full on. This article and the blog that it is on was amazing!!

http://themscure.blogspot.com/2011/06/getting-into-hsct-treatment-if-you-have.html

After reading the above article and everything else that is written on George Goss's blog, I had my start!  I also joined an amazing Facebook group, Hematopioetic Stem Cell Transplant -
MS & Autoimmune Diseases.

This group has all the information in the File section that lead me to where I am headed. I ended up
asking a few questions in the Facebook group and the answer's that came back to me were very
inspiring. I met an amazing mom, Anne, that helped her son go to Russia last year for his transplant.
She was pushy at first and I am so thankful for her!! She said to get those application letters sent now!!Worry about the money later!! We FB messaged more than I ever have with anyone!

 My letter's went out to Chicago, Israel, Germany, Russia, Sweden and Italy. I was on my way!

 Little did I know that it wouldn't be that easy!!

How I got here

Since this is my first blog post, I thought I better tell you how I got here!

My MS started the Fall of 1991 about 7 months after our first son was born. I had a horrible case of ON, Optic Neuritis. The pain was worse than childbirth. A wonderful neurologist saw me and was kind enough, or I guess smart enough to not diagnose MS at that point. Because of his diagnosis, I wasn't banned from getting health or life insurance.

Life went along very well, a little stressful, for 10 years. We had our 2nd son, built a house, started a business and spent time with our family and friends.  The dreaded monster came back though with a roar and teeth. The first symptom was numb hands, This happened after we had gone for a bike ride so I thought that holding the handle bars caused it. The numbness lasted about a day and went away. The next day my feet started getting numb and tingly. At this point, I thought about what that wonderful neurologist said 10 years before. As the numbness started climbing up both of my legs and finally stopped at my waist I knew that the monster had come back and it wasn't going away.

I saw a neuro in our town that was horrible. She just told me that I had MS, didn't offer any help and sent me home. Thankfully I had scheduled a second opinion for a couple of weeks after that appointment. My Mom and Dad were driving me to Billings on September 11, 2001 to see another dr. when we heard on the radio about the Trade Centers in NYC.  I'll never forget that day.

I finally got my 'official' dx on 09/11/01.  The new doctor knew what he was doing and sent me home that day for a week of IV steroids. I had not been able to feel anything for weeks from the waist down, or should I say the feet up? You could have stabbed me in the thigh with a knife and I wouldn't have felt a thing. The steroids started working quickly and my feeling came back.

This was the start of my journey to get HSCT.  I didn't know it at the time, but everything over the last 13 years has been a rollercoaster. First they put me on Avonex. I did that one two times for a little over a year each time. Then Copaxone twice for a a couple years each. My latest epic fail was Tecfidera.

I have also tried all of the MS diets, been gluten and dairy free, etc... all the while my right leg has gotten worse.  Foot drop is not fun, falling in my kitchen sucks, having no balance makes me look drunk.

That is the short version of how I got here. The final straw was when my neurologist said he would call in a prescription for a wheelchair.

My first hope was when I saw an article about Stem cell transplants for MS.