Tag Archives: HSCT transplant wave MS

The Sweetest Goodbye…

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The Sweetest Goodbye…

How do you say goodbye to the people who just dedicated a month of their lives to saving yours?  You take a deep breath, put on a smile and document your appreciation in pictures.  Dr. Fedorenko always said that “We are a team!”  I think that is evident in these pics.  Take a look at the events that unfolded before my departure, today.

Me & Dr. Fedorenko

Me & Dr. Fedorenko

Just a little excited!

Just a little excited!

Me, Mom & Dr. Fedorenko...HALTING MS!!!

Me, Mom & Dr. Fedorenko…HALTING MS!!!

Me with our favorite food staffer that we nicknamed "Bon Appetit" because that's what she says every time she serves your food.  She was so sweet.

Me with our favorite food staffer that we nicknamed “Bon Appetit” because that’s what she says every time she serves your food. She was so sweet.

One of the cleaning staff who was always practicing her English.

One of the cleaning staff who was always practicing her English.

The beautiful Galena.  Chemo nurse. Aspheresis nurse. Transplantation nurse.  Two-handed fist-pump nurse. Friend.

The beautiful Galena. Chemo nurse. Aspheresis nurse. Transplantation nurse. Two-handed fist-pump nurse. Friend.

A shout out to the Moscow Momma!

A shout out to the Moscow Momma!

Just waiting on a cab, and a new future.

Just waiting on a cab, and a new future.

On this particular morning, there were no blood draws, no IV drips, no temperature checks.  There was one unexpected prednisone injection that is meant to bolster me over the next 72 hours.  Other than that, just a lot of reflection.  Mom and I are now hunkered down in our room at the hotel, where each day, I will try to venture out bit by bit.  I am still very dizzy and unbalanced, not to mention jittery from the steroid.  But, I am at peace and content to gaze out the window at the view of the Izmaylova Market that is calling my name…in time.  I will be continuing to blog for the remainder of our stay here, which will be until next Friday.  Expect those posts to include some input from my Mom on surviving/supporting as a guest/companion of an HSCT patient while here in Moscow.  She has it down to a science, and wants to show all of those other Moscow Mommas how it’s done.  In addition, I’m hoping to be able to share some pics of this great city.  Why shouldn’t you all have some fun coming along, too!

Let’s Party Like it’s My Birthday…

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Let’s Party Like it’s My Birthday…

Drink Bacardi, like it’s my birthday…

On the day that a patient has their stem cell transplantation (the day you get your stem cells back), it is coined your new birthday…the birth of your new immune system, which is free of MS. As much as I don’t think of it as a physical birth, I have no problem playing along if there’s a celebration involved. Feel free to have a cocktail in my honor. Happy birthday to me, baby!

It was a perfect day today, here in Moscow. The sun was shining and the sky was so blue. My sterile “box” just seemed to have a warm glow that lended itself to creating the perfect vibe for my mindset. It’s as if it knew what was about to transpire.

My routine has become me lying in bed from 5-6:00 a.m. I get in the shower at 6:00 a.m and am ready for whichever nurse may come flying in the door with an IV drip or 5, or injections, temperature, pills. Today, was a little different. Dr. Fedorenko promised that there would be no early morning anything, so, I decided to sleep until 6:00 a.m. Lie in bed until 8:00 a.m., have breakfast and then get my shower as late as possible. I ended up in the shower around 9:00 a.m. and when I came out, the furniture arrangement had changed. The bed was in the middle of the room, my side table moved to the far wall and a vitals monitor placed on top of it. The floors were mopped and every possible touchable surface was disinfected.

Dr. Fedorenko arrived to let me know that at about 1:00 p.m., they would start moving in all of the medical supplies required for the transplant and that my stem cells would arrive, via courier, shortly thereafter. They did arrive, promptly. I was asked to remove my yoga pants and lie down. I was able to wear my tanktop and my own underwear. They hooked three electrodes to me, placed the automatic blood pressure cuff and began my run of IV Solumedrol which they utilize during the transplant to avert any allergic reaction to the stem cell preservative. Next up, Dr. Nikita arrives to assist. The nurse, Gillana takes center stage, and a bevy of other nurses are fluttering in the hall as my mom tries to take pics from a distance. A stem cell transplant is a very big deal here no matter how many they do, and the staff all seem to marvel as it take place, as well as stand ready to help if needed.

Dr. Fedorenko proceeds to tell me that we are about to start the transplant and to warn me that I may feel a sensation of hot fire in my throat, extreme pressure in my chest, difficulty breathing and painful back and muscle pain. He said that I may also become very dizzy. Thankfully, because I’m in constant contact with other HSCTrs, I was already well aware of those potential setbacks. The two most ratcheting experiences that you have while you’re here, are your catheter placement, which is a small surgery, and THIS, the transplantation. I had been so lucky so far, that I knew the odds were no longer in my favor, and I was ready to pay the Piper for my ticket to freedom.

An oxygen mask was placed on my mouth, which was refreshing. Dr. Fedorenko proceeded to hold my hand and said “We are beginning the transplant…NOW”. Of course, I braced a little, and nothing, I knew exactly where I wanted my mind to be and was completely focused. Dr. F. commences his arsenal of questions “Do you feel any pain?”, “Are you having difficulty breathing?”, “Do you have a hot feeling in your throat?” All the while, I am completely in the zone, breathing very deeply and calmly. I finally had to say “No more talking.” He said “No more talking…okee (with Russian accent)”. From that point on, I used a nod of the head to indicate yes or no. While this entire conversation is going on, I’m still thinking that they haven’t done it yet, because I’m not feeling anything. Next, he says “We are done with the first bag.”. Because I had two days of stem cell collection, there are two bags. If you remember, the first bag only had 800,000 stem cells in it and the second had 1.2 million, so, I knew with the second bag, this was when I would be sphewing out a few “Sweet Jesuses”. Well, I think Sweet Jesus was there, but he most definitely was not being uttered across my lips. Again, no pain or sensations. I must say though, from the first bag on, you can taste the preservative used in the stem cells and it tastes like creamed corn (who doesn’t love creamed corn?). Crescendo….Dr. F. states “We are finished.” WHAAAATTTT??!! I jokingly say “Where’s the scary part?!” They all chuckled. There were some very, very happy, “I came to do my job and I did it well”, staff in that room. They were all so proud.

After the transplantation, the IV Solumedrol continued to run, as well as protective fluids. After they have completed, they bring a bed pan to a chair beside the bed (bottle for men) and ask you to urinate into it in order for the doctor to inspect it for color and consistency. Well, I knew as soon as they put it on the chair, that my legs were not long enough to reach the floor and straddle the chair at the same time, let alone keep my balance while doing so. I requested that they put it onto the bathroom toilet so that I could grasp the bathroom sink to support myself. They obliged. Note: color/consistency…good! Although I was a little wobbly after the transplant, a lot of that had to do with the Solumedrol, which continues to fuel my hunger. Lunch had been served during the transplant and was being held for me to ravage. By 1/2 hour after the transplant, I was up and ready to go. Not anywhere in particular, just the restroom to purge all of the IV fluids.

So, there you have it. Miracles never cease in this stately medical facility. Blessings of comfort continue to flourish for me and the hope of an MS-free life for me grow closer. Right now, my symptoms are ramped up due to the swelling from the Solumedrol, but, that will subside. Starting tomorrow, they will begin to closely monitor my bloodwork. We will wait for it to bottom out, and then we will wait for them to rise. That’s how the flow goes. I will have more details on that process as the days progress.

I would like to leave you with transplant pics from today, as well as pics from a little something that I came up with last night in my spare time. You can’t lock me up in a golden tower and think I’m not going to be thinking stuff up!!! I started a World-Wide Cheer Wave (just like at a football game), challenging friends and family around the world to do the “Wave” and post it on FB for everyone to see. It was a huge success and supporters, young and old, two-legged and four-legged came out to get me through today and my stem cells to their homes. GREAT JOB, EVERYBODY! I really do have the best cheer section…EVER!

Please, feel free to go have that Bacardi and enjoy the pics (all are clickable to make large)! Cuz’ it’s my birthday!!

THE TRANSPLANT!

Pre-transplate mood tunes.

Pre-transplant mood tunes.

Waiting for the stem cells and prep.

Waiting for the stem cells and prep.

Dr. Fedorenko checking on the stem cell delivery.

Dr. Fedorenko checking on the stem cell delivery.

Prep cart.

Prep cart. Is that a lobster pot I see? Hmmm.

The stem cells arrive!!

The stem cells arrive!!

Vitals are in check!

Vitals are in check!

Transplant accessories?

Transplant accessories?

Stem cells are warmed in a bucket.

Stem cells are warmed in a bucket.

Tranplantation in action.

Transplantation in action.

Me throwing my ceremonial bucket of left over stem cells.  It's a tradition!

Me throwing my ceremonial bucket of left over dry ice. It’s a tradition!

THE CHEER WAVE HEARD AROUND THE WORLD…

Where the Wave began. In my room in Moscow.

Where the Wave began. In my room in Moscow.

Vicki Wilson, St. Augustine, FL

Vicki Wilson, St. Augustine, FL

Sandy Wolford, State College, PA

Sandy Wolford, State College, PA

William & Harry, wherever they want to be!

William & Harry, wherever they want to be!

Patty Chwatek, keeping the wave going at Planet Fitness

Patty Chwatek, keeping the wave going at Planet Fitness

My husband's NESL blacktop crew!!!

My husband’s NESL blacktop crew!!!

Margaret O'sullivan from New Jersey.

Margaret O’Sullivan from New Jersey.

Lesa Lashinsky from Hollidaysburg, PA

Lesa Lashinsky from Hollidaysburg, PA

Lauren Abbot & Friend from Minnesota

Lauren Abbot & Friend from Minnesota

Kristy Cruise from Gold Coast, Australia.

Kristy Cruise from Gold Coast, Australia.

Mick, helping me get some satisfaction.

Karen Frederick doing the jammy wave in Woodbury, Pa

Karen Frederick doing the jammy wave in Woodbury, Pa

The Peters boys doing a double wave from Erie, PA.

The Peters boys doing a double wave from Erie, PA.

Clair Peters doing her very first wave.  She's already got it down!!

Clair Peters doing her very first wave. She’s already got it down!!

Autumn's awesome yoga Wave...

Autumn’s awesome yoga Wave…

Alison Elder waving it up in Tyrone, PA.

Alison Elder-Bonsell waving it up in Tyrone, PA.

Adam doin' the Wickel Wave!!

Adam doin’ the Wickel Wave!!

My 611 co-workers waving on my stem cells.  Love them!!

My 611 co-workers waving on my stem cells. Love them!!

Tuck Russel doing the canine wave.

Tuck Russell doing the canine wave.

This little one is helping me reach for the stars.

This little one is helping me reach for the stars.

The Altoona Chorus Wave!!

The Altoona Chorus of Sweet Adelines International Wave!!