My last post was almost a year ago. It’s a whole lot easier to post positive, upbeat blog posts. It’s been a rough year, and I’ve done a lot of questioning throughout. Did HSCT halt my progression? Would additional treatments help?
When I started researching HSCT for PPMS, I connected with as many other PPMSers who had undergone HSCT as I could, but there were not many others who had gone before me. I was only the 45th international (non-Russian) patient treated in Moscow. At that time, only Moscow and Tel Aviv would treat primary progressive patients. The results for the PPMS patients were mixed, and it was still early in many of their recoveries. I made the decision to pursue HSCT and told my family and friends about my decision. I was thrilled that there was something I could finally do to try to alter the course of my disease.
Roughly two years later, PPMS patients can now be treated in Russia, Israel, Mexico and the Philippines. Russia has treated 255 international patients! The most exciting news is that there is also a PPMS patient currently being treated at Northwestern in Chicago, by Dr. Burt. I’m hoping she’s the first of many! Dr. Burt’s Phase III clinical trial, the final stage, will be competed this year. There will be a 5 year required patient follow up, ~1 year to write and publish a report for peer review, ~1 year to write an FDA submission, ~1 year of committee review. Hopefully by 2022 the FDA will finally recognize HSCT as an option for MS patients in the USA!
My first year post-HSCT was a practice in patience and I learned to expect the unexpected.
I had hope for a stable future, an end to my progression, and an increase in the quality of my life.
My second year was more difficult and I started to question if my progression had really been halted. I struggled with balance, walking, strength and overwhelming fatigue once again. Dr. Fedorenko sent out a post HSCT questionnaire in January 2016 which helped me clarify my concerns. In February 2016, I made the decision with Dr. Fedorenko’s help to pursue additional “booster” treatments to halt my progression.
The additional treatments to stop the progression are Rituximab infusions. Rituximab is a monoclonal antibody drug that is used to treat diseases with overactive or dysfunctional immune B-cells. It binds to the protein CD20 on the surface of B-cells, which helps other cells locate and eliminate the overactive B-cells. Rituximab was part of my initial treatment in Moscow. It’s not a big deal to get extra Rituximab infusions. However, it IS a big deal to convince insurance to pay for it. There are some insurance companies that will pay for it, but the process often involves a great deal of effort by the patient and their doctors.
I had my first “booster” Rituximab infusion last Thursday. Everything went well and I will have three more that will complete my HSCT consolidation therapy. I’m still hoping to definitively stop the progression of my disease.
I’ve been working with a new physical therapist for the past 3 months. As a neurological PT, she’s been able to explain to me a great deal about balance and gait that I never understood. She’s had me focus on exercises that all have practical applications for my movement. I had a little epiphany when I noticed that the way I was shifting my weight for a balance exercise mimicked the motion of a “normal” gait. She has me practicing walking with a Lite Gait, on a rubber mat with a cane, and around obstacles. I’ve learned how to safely use a cane for short distances and stairs. Yesterday, I walked 300 feet (less than 100 meters)with my cane! She also took the time to give me an exercise plan that breaks down what I should do each day. In the past, I’ve always felt frustrated that I was unable to complete all of the exercises that I thought I needed to accomplish daily. Now, I have a manageable plan.
PPMS is a horrible progressive disease can easily rob us of our dignity. My family members that live with me help me with daily activities, take care of 100’s of daily tasks that seem insignificant individually but add up to an enormous amount of time & effort and are my lifeline. I feel fortunate that my son, Adam, and my husband, Fred, are still available to help me. I continue to need their daily assistance.
I’ll be heading back to the beach soon. Every year, I wonder if it will be my last – if I’ll be able to continue using stairs and walking the 50 steps to the beach walkway. For those of you who have followed my HSCT journey, it’s important for me to reiterate that I have no regrets. I was incredibly fortunate to have received this treatment from the kind and devoted people working in Moscow’s Pirogov Hospital. I’m so grateful to have the support of other post-HSCTers around the world. We are a small group of individuals, but our numbers are growing.
I recently met a man with PPMS. He’s the only PPMSer I’ve met outside of Moscow – and he lives 15 minutes from my house! I hitched a ride with him and his lovely wife to my first informal MS gathering – a La Casa Internationale Del Pancakes.
Charlie is so smart and full of love. We are all grateful that this sweet pup is part of our family.
Charlie is so smart and full of love. We are all grateful that this sweet pup is part of our family.
Summer is here! The weather is warm but life is still extremely challenging. I’m finally at the beach and so happy to be back! I stayed in Maryland longer than usual to successfully finish off my physical therapy. My physical therapists were impressed with my progress. We’ve been working a lot on my brain-core connection. I’m improving much slower than I would like, but I am definitely stronger than I was before. I’m often asked if the treatment was successful. I believe my progression has stopped, which is the goal of HSCT. So, yes! It was successful; but unfortunately I started out with a high level of disability. That has not changed. I continue to struggle with my mobility, but my core is stronger and finally connecting with my brain! My therapists tell me my balance and dorsiflexion have improved and my movements are much more fluid. I have to continue exercising daily or one of my body parts feels left out. It’s a constant battle to do enough, but not too much. Too much knocks me out for a few days to a whole week. I’ve stopped pushing myself to exhaustion and I’m planning on starting poolates or my version of pilates in water.
New Life Birthday card from my sister!
Today is the one year anniversary of my New Life Birthday in Moscow! I’m so glad I was able to have HSCT when I did. The waiting lists continue to grow as more people with autoimmune diseases from all over the world learn about it. There is a facility that has recently opened its doors to international patients. It’s in Puebla, Mexico. They’ve been treating patients for over 10 years, but the first group of international patients have recently come back home to their families! Moscow, Tel Aviv and Puebla all treat progressive MS patients. There are many more places that treat relapsing remitting multiple sclerosis. It’s really wonderful that PPMSers have more options available to them :- )
I wish I’d made more progress by now, but I’m glad that I’m not worse than I was a year ago. I still have time for further recovery. I’m expecting more improvements during the next two years with continued physical therapy, exercise, good food and good mood!
Sweet little Charlie has been a member of our family for 6 months and continues to be a devoted pup. He’s come a long way from his early days and has stopped barking at every household noise. He’s always by my side and is a very good listener. He enjoys beach life, and many of the pups he encounters every day.
Charlie gets a kiss from his favorite snowball guy!
Shopping at Home Depot
Dancing for treats :- )
Happy New Year to all!
Yes, I know 2015 is well under way, but I’m still slow at most everything I do. However, I’m still moving forward. I got sick for the first time since HSCT. I had the flu a few weeks ago and have recovered from the illness, but my recovery from HSCT took a sharp nosedive. Although I know this kind of setback is not unusual after an illness, it is still very discouraging. So many others have gotten sick, been hospitalized, fallen or had other setbacks after HSCT – I’ve considered myself very lucky. I also had not fallen since April, and was pretty damn proud of that too. I fell while I was sick, but it wasn’t a “bad” fall. I’m lucky I did not get hurt. Collapsing in a heap on the floor is much easier on the body than taking the full brunt of a fall. My strength, ability to walk unassisted and my balance suddenly disappeared. I had no idea how long it would take to start regaining some of what I had lost. So many fears crossed my mind. What if I haven’t been doing enough? What if I’ve been doing too much? What if my old symptoms improve, but I get new symptoms? My mind was going all over the place with ‘what ifs.’ These thoughts are also not unusual for any post HSCT patients. I just try to keep reminding myself – Full recovery can take up to two years!
It’s been an incredibly rough week, but a few days ago I started to feel a bit stronger. I took a 10 minute walk in the snow in our backyard. I had an arm to hold onto the whole time and I lifted my legs as high as I could. It felt wonderful and exhilarating – until it didn’t. I have terrible, old snow boots and those boots were not made for walking. I still had a good feeling about pushing myself a bit and tonight I was able to walk on my own again! I’m slowly getting back what I lost. Thank you Sari and Adam for your unending support and encouragement!
I’m expecting to be back on track gaining strength, increasing my mobility, balance and working hard with my dedicated physical therapists and occupational therapist. Thank you to all the love and inspiration from our large and always growing post HSCT family.
Soon we will be visiting my sister, Marian, and my brother-in-law, Robert, in the Poconos. I’m excited to see them and have them see how I’ve progressed. We were supposed to go visit a few weeks ago, but that’s when I got sick. They both accompanied me to Moscow and stayed a few days while I underwent the testing and was accepted for HSCT treatment by Dr. Fedorenko. They were really happy to have met Dr. Fedorenko, Anastasia and the other patients. Then they flew home and went back to their family and jobs. They returned to Moscow a few days before my departure to help me safely get back home. I’ve only seen them once since then, and that was that their daughters wedding.
Yesterday, I had an MRI of my brain, cervical and thoracic spine with and without gadolinium. I was delighted to hear that I have no new lesions and my previous lesions had not changed at all. My MRI was compared to the MRI I had in Moscow and the last MRI I had before Moscow. I will share the report from my radiologist with Dr. Fedorenko as soon as I get a copy!
Other exciting news is our adoption of Charlie. We got him the end of December. He’d been found running on a highway in October and had been ‘on his own’ for a long time.
He was brought to our local animal control, cleaned up and groomed. He stayed with the family who found him for 4 months and they brought him back. We read about him and went to animal control to see him. We arrived just as he was leaving in the arms of one of the volunteers. He was so frightened, he was shaking. We met him the following day and decided we wanted to adopt him. We visited him again with our other rescue pups, Lucy and Desi. Desi likes everyone, but Lucy is definitely picky about who she likes. Charlie growled at both of them while wagging his tail. Lucy and Desi both liked him anyway. He’s been with us for almost two months and he is so sweet and smart. He’s gotten over a lot of his fears. We’ve been training him and he’s doing really well. He still growls at Lucy and Desi, but it’s definitely less. He loves to run in the backyard with Desi! This is Charlie now.
Learning to shake!
His first trip shopping.
Charlie’s first photo shoot!
We all adore him and are forever grateful to everyone who has helped Charlie along the way.
*** not edited, just written***
I had an interesting bunch of days here in Moscow. So absolutely delighted to meet everyone from all over the world who are here to improve the quality of their lives. I’ve never met anyone with Primary Progressive Multiple Sclerosis in person EVER. There are 4 of us here. One I have actually not met. I was already in isolation when he arrived; New friends from Australia, New Zealand, Norway, Canada, and the US is represented by MD/DE me : ), Indiana, Georgia, Texas and Montana. All different stories and backgrounds to learn about which is so interesting for me, who does not get ‘out’ much at home. We have a variety of different autoimmune diseases, one patient did find out she had a 2nd autoimmune disease until after complete testing. We are a variety of ages, maybe 34 to 64 years old, many varieties of disabilities and pain levels that we all started out with and have had for various lengths of time. 100% of us know that this is where we need to be to improve the quality of our lives. Many more able bodied patients have been able to go sightseeing as they go through their testing and ever afterwards for a bit. Unfortunately, my rollator and I have only gone outside on the hospital grounds to seek some sunshine. Once, a dear friend, Ali rolled me all over the hospital grounds in one of the hospital wheelchairs. I am grateful for that experience!!!
I can’t stress enough that all I’ve read and learned about HSCT through the various facebook groups, phone conversations with previous patients and Dr. Fedorenko have been invaluable. There is a support system in place in case anyone who had HSCT anywhere in the world can reach out and ask questions. Dr. Fedorenko is also available by phone or email. Anastasia, his liaison is the best person for the job. She gives so much extra time to also works tirelessly to ensure everyone is well cared for on all levels.
There is a language barrier for sure and I’ve been learning more Russian daily, Recently, if there has been anything that’s not extremely simple to communicate, I’ve used google translate.
Anastasia and all the nurses can contact Dr. Fedorenko at any time day or night. He also comes in on the weekends to check on all his patients. Anastasia goes to the airport with a driver on any day a new patient arrives, so she can greet them personally. She does this on the weekends too!!!
Any fears or concerns that family or friends brought to my attention were not warranted at all. I know everyone had my best intentions at heart, but it did cause me unnecessary stress. I wanted to arrive as strong as possible, but instead my stress level caused my disability to further decline. I did extensive research, I was not ‘catfished’ or scammed in any way. I’m not the smartest person in the world. But as a retired/disabled dentist, I was perfectly capable of making an informed decision.
I’ve been extremely fortunate during my treatment. Besides some intense lumbar problems that were extremely painful during my MRI testing, I had absolutely no problems. I ‘d done so well with all the other testing, I asked if he MRI could be done the same day. No idea if I would have had the same problem the following day. For anyone not familiar with lengthy MRI’s, you are placed on your back, call button in hand and mechanically rolled into a long machine. Some are open, some are closed. This one was closed. It can be noisy and I was given headphones. You still hear strange noises, but the sound is diminished. So, I needed a brain, cervical and thoracic MRI. Midway through the procedure, ALL my extremities got numb, burning and uncomfortable. But, I wasn’t done yet. I was rolled out and given a routine injection of gadolinium to check for enhancements and rolled back in for the second half of the MRI. I just kept breathing in and out and knew I was halfway done. I finished the MRI and was glad I did not press the button for the tech to stop. I was in miserable pain and got freezing cold. After being wheeled back to my room, I was really glad Marian, my sister and Robert, my brother-in-law were there. They asked for an extra blanket. Dr. Fedorenko was called and he agreed I could take my own 800 mg ibuprofen (advil) and an ice pack for my lower back was delivered quickly. I fell asleep and was better in a few hours.
That was my total discomfort during the entire chemo/HSCT procedure. So many people experience more severe side effects that can be painful and exhausting. From what I heard, the sooner you ring the nurse that you are in any kind of distress, it will be handled ASAP. I know everyone will not fair as well as I did during treatment. I WISH my lack of difficulties would mean my recovery will go smoothly. I know for a fact that there will be extreme fatigue, ups and downs with symptoms and patience, good food, good mood and family support are essential. If/when I have a terrible day, week, month etc, it’s all part of the roller coaster recovery that I’ve learned is normal and appropriate. I will, in time, have more good days than bad days and that is my goal. Please be as patient as I will be and be as encouraging as possible! I have real hope….not to be an able bodied person, but to be able to finally strengthen muscles that will actually respond to hard work and dedication : )
I know this is not my typical blog. It’s too wordy and not enough of the photos that I love to add!
Here goes some of the highlights before my isolation started.
I know this must not look too exciting to most of you, but I eat extremely healthy at home. This was a tasty, flatbread/cracker from Gro Larson. Full of fiber and love and she gave me more before I entered isolation.
I don’t even remember what it’s called. Thank you, Gro!!! She also brought yummy treats for all of us : )
This was taken on Friday July 4th, but after 5pm. After 5, the easy door with the ramps is locked. There is a convenient alternate exit, but there are a few stairs. There is a railing which helps. I’ve done this with Marian and Robert and after they left with other people nearby in case I needed help. This was the first time, I was alone and I felt ready. I love my lightweight Euro Rollator, made by Drive Medical and comes with a basket for water, sunglasses, light jacket in case the sun goes down etc. The small pouch was added on right before I left for lipgloss, tissues, reading glasses. It’s perfect for little essentials.
Anyway, I locked both wheels and easily manage both myself and the rollator easily. This time I was meeting Brendan who had been out with his dad. The hardest part for me is pushing open the heavy door.
I met Brendan outside. He found a lovely sunny spot and we got to chat about our lives for a long time while we enjoyed the gardens, statues and beautiful sunshine. And of course a selfie. Brendan’s hands are much more stable than mine! I always appreciate his company, his insight and his wisdom too!!!
Well, July 3rd came with little trepidation. It was the day of my reinfusion, or official transplant day. I was excited, but still fatigued. I had heard about all the scenarios that could make stem cell reinfusion a bit uncomfortable. I had my camera team ready. No immediate family were in the country. So, Matt ‘volunterred’ to be my videographer and Anastasia ‘agreed’ to take photos. I had forgotten how the prep for the reinfusion is simpler and shorter than the actual procedure.
The extended prep time allowed me to use my laptop for a bit.
Now, the team was ready, but I wanted to lay down and not be propped up on one pillow.
I asked Dr. Fedorenko about the liquid nitrogen process and he showed me how it would be thawed.
This is how simple it is to get your own stem cells back. By the way, the whole time, Dr. Fedorenko was asking me about my symptoms. Slight metallic taste at the back of my throat, I coughed a few times, and saw a few black dots. My stomach hurt a bit. I wanted to go to sleep : )
No bone crushing men sitting on my chest, no smell of creamed corn. It all went very smoothly and quickly. What I did not know until it was all over was my heart rate was all over the place during the procedure. Another EKG was scheduled for the next morning.
One bag was already done. Remember, it took me two days to collect the 2 million that I needed. If you are squeamish, look away. Remember, stem cells are bloody red!
The next bag was getting ready for reinfusion, by placing them into the vials. Effortless reinfusion because of our wonderful jugular catheter. Bag one is completed! Bag two went quickly too!
After a much needed nap, Sheila and I celebrated our new birthdays, on July 3, 2014. We enjoyed the traditional throwing of the liquid nitrogen down the hallway.
It was a very happy day and we celebrated by sharing chocolate, not vodka!
Then we gathered the four of us who celebrated
our new birthdays in the last two days!
HAPPY 4TH OF JULY!!!
This was farewell to my dear friend Tom. He was here with his niece, Hatice and her husband, Kemal. He needs to go back to Melbourne for his son’s wedding in July! He was a good friend, shopped for cheese, chocolate, fruits and vegees and made a lovely donation to my hospital bill. When, I’m able to travel, I’ll be visiting his beautiful family in Melbourne!
Hatice has also been a great help to me. She visits, makes me tea and heats up yummy food her husband picked up! She will do fine with HSCT. I think she’s on the same schedule as Kellie and Judi 🙂
This is Allan and Nicky who just arrived to take Tom’s place. I’ve been told to ask them for anything I need..but my fridge is stocked : )
The highlight of today was an extremely festive tea party in the doctor’s lounge area.
Dr.Federonko and Anastasia has been working so hard collecting videos from past patients and organizing this 5th year anniversary. The videos were heartfelt and full of humor and depicted how lives had improved for the better, There were previous many previous HSCT patients there, the food was delicious and the conversation was lively. Many of the Russians spoke English and were able to translate for the rest. It was a living tribute to Dr. Fedorenko’s dedication to his patients. The staff had a lovely gathering for current & past patients today! Anastasia made a delicious surprise cake for Sheila’s birthday. I loved hearing the successful stories from people of all ages and types of autoimmune diseases. I was fortunate to be sitting across from Tatyana I. Iovona, PhD. She works for the European Hematology Association, Scientific Working Group for the Quality of Life and Symptoms. Geraldine Padilla, PhD will be so happy to be in contact with Tatyana again!!! I believe they worked together in 2006.
Dana brought Lucy and Desi for a goodbye visit before Fred and I drove from Maryland to New York on Friday. Sari was driving down to Maryland to help with our move. We met her at State Line Liquors in Delaware and tasted some delicious bourbon and rye with her. It was great treat to meet be able to see her in Delaware before I left for Moscow.
We spent the night at Marian and Robert’s (sister and brother in law). My nephew Dorian and his fiance, Amanda brought their sweet Jack Russell Terrier, Molly. Ella, Kirby and Molly played, but when Molly got a bit nervous, she was happy to be held! Got to have more puppy hugs before leaving the USA.
We got to the airport in NY and had plenty of time for a refreshing beverage before the flight. My sister, Marian and my brother-in-law, Robert took great care of me. I kept searching for Andrea and Matt, who had flown in from Texas. We did not find them until we were on the airplane. Her assigned seat was next to my sister! We made arrangements so she could sit near her husband. I moved to sit next to my family and all was well.
Anastasia met us at the airport looking beautiful as usual. There was a torrential downpour as we were going to our hotels. Hotel Vega is really lovely. The staff spoke English and were exceptionally helpful.
We ate at the hotel for dinner last night and for breakfast today before going to the hospital.
We met Stevie and his wife, Carol in the lobby and left for the hospital for an 11 am arrival. After many months of anticipation, June 16th finally arrived!
Anastasia and Dr. Fedorenko met us upon our arrival. Andrea and Matt met us an hour or so later….
After paying $1000 for testing, we all went to our new ‘home away from home’ for the next 35 days. Anastasia and Dr. Fedorenko checked in again on all of us. Dr. Fedorenko told us today we would only get the EKG, but tomorrow a full day of testing starts at 7 am. Let the testing begin!!!
Marian helped me get settled and decorate. Robert thought we were thinking clearly enough to turn on the power strip for electricity!
The room has everything necessary for comfort and necessities. Wifi works well. Bathroom and shower are convenient. Haven’t showered yet, but it looks manageable for me. There is plenty of storage space for dry food items. I brought a lot because I’ll be here on my own for a while. Although everyone who will be here helping their loved one has said I would not be alone and they would gladly help me too!!! Thank you all for your generous offers. There are a few hooks and hangers for clothes and a variety of dishes and utensils.
The fridge is much larger than the college fridge that I was expecting. Dr. Fedorenko approved the red wine my sister brought to enjoy along with tonights dinner : )
Lunch was vegetable soup, cauliflower, tomato and dark bread. Dinner was porridge, dark bread and cookies. There are other options with beef and chicken and assorted white breads too that I did not chose.
That’s all for now. It’s been a long few days. I’m glad I’m here : )