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.
It’s been five months since my stem cell transplant, my HSCT birthday and the beginning of my new life. I’m amazed at the variety of changes that I’ve experienced. When deciding to go for HSCT, we are often reminded that our goal must be to stop the progression of our disease. Any improvement is a bonus. Well, we are all hoping for that sweet bonus.
I’m still hovering at about $80% of what I was hoping to raise for my treatment and related expenses.
I recently got 3 more donations and I want to thank everyone again for their support.
I’m happy to report some improvements due to HSCT since my last update. I walked up a sandy slope without assistance or holding onto anything (except a dog leash!) I walked up three flights of stairs without holding on to the bannister. I usually hold on for balance or actually use my arms to pull myself up. I’ve been able to walk up stairs without using the bannister a bunch of times, but I can’t do it every day. I’m still excited that I could do it at all! My foot drop is less pronounced than before as well. It was always the main cause of my trips and falls. I’ve not fallen since before I left for Moscow! Before HSCT, I was not able turn my head and change the direction I was facing, or pivot from my hips without holding on to something or someone. It might seem insignificant to most of you, but it has made a difference in my daily life. I’m trying to use the rollator less inside the house. I use it if I’m feeling wobbly or if I have to transport something from one place to another. I’ve just completed a 30 day core workout challenge through Custom Strength Physical Fitness in Ottawa, Ontario on Facebook and learned a few new core exercises that I’ve never tried before.
I also helped a friend get the information he needs to apply for HSCT. I’m thrilled that I was able to help him. Unfortunately, he does not qualify for Dr. Burt’s clinical trial in the US. His latest MRI has no new lesions. To qualify for the clinical trial, you must have new lesions. Is it crazy that we were both hoping he would have new lesions!?!? Anyway, I wish him the best and hope he gets accepted somewhere soon.
I was the 45th international patient to be treated in Moscow for HSCT by Dr. Fedorenko. By now, there must be close to 100 international patients that have been treated. Patients who get accepted are now given treatment dates in 2017. There are hospitals in other countries with much shorter waiting lists. Please contact me if you or a loved one has an autoimmune disease and are interested in getting more information about HSCT.
There have been many amazing improvements in walking, hiking, jogging and jumping in patients that have had HSCT. We can not compare our improvements with others. We all start out with various levels of disability and all recover differently. But, it sure is encouraging to see the before and after videos!
There have been a few bumps in the road of my HSCT recovery. I do best when my surroundings are clean and tidy. As some of you know, my family moved to a much smaller home while I was in Moscow. I’ve been there only a few times to help clean and get it organized. It was important to my recovery and mental health to be in a comfortable and clean environment when I came back from Moscow. The ocean air and beautiful breeze was also a major factor in my decision to start my recovery and PT at the beach. Getting the ‘new’ home clean and ready for me to be comfortable to live in has been a challenge for me. My husband, who had a heart attack last year after Thanksgiving, was having more symptoms recently. He needed two more stents inserted for his heart to work efficiently. I’m was home for his hospitalizations and for Thanksgiving with my family. He’s doing really well now and I’m back in Bethany to continue my physical therapy. I’ll be moving ‘home’ for good soon. I’m struggling to quickly get the house in reasonable shape so I can concentrate on my recovery and not excess clutter that needs to be donated! Clutter causes me stress and I’m trying to minimize stress and maximize my ability to heal. Lucy and Desi continue to be wonderful loving companions that always brighten my day. Tomorrow I’m going to finally meet Brenda Lou!!! She had HSCT in Chicago over a year ago and she’s at the beach visiting with a friend : )
One of the last warm and sunny days on the beach.
Sari found this treasure!
My new favorite of Lucy. She was looking for a new friend : )
Desi on look out!
I was delighted to meet Brenda Lou at her friend’s home in Fenwick!!!
She had HSCT 14 months ago for CIPD in Chicago : )
I’ve been back home for almost 3 weeks and all is well. This would have been my last post before the day I left Moscow, but fatigue got the better of me!
Wanted to share the photo of my jugular catheter insertion site. It’s so tiny. Everyone always sees the huge bandaged up tube, but this is how small it really it. Nothing to worry about going in or coming out! There is mild discomfort upon insertion. Honest!!! The day of the photo it was just being cleaned, not coming in or out. The redness on my neck is just from the tape and covering that is usually on top of it to keep it clean and dry. I made the photo small so no one would look at it and faint : )
This is Anastasia! My last hospital payment was delayed because the banks were closed for the July 4th holiday. Then I went into isolation. I was not able to make the final payment until I got out of isolation. Anastasia wheeled me through the underground tunnel and got a great cardio workout! She was running so fast! Here she is holding my credit card with my family photo on it : ) I got a capital one credit card with NO foreign transaction fees. Those fees can add up!
Now, she’s waiting for the payment to be processed. She is smart, fun, hardworking and always so sweet and helpful!
I am not sure how everything went so smoothly before she was hired in May. She had MS and was treated by Dr. Fedorenko a little over two years ago. Now, she is healthy, happy and does everything she can to help every patient.
Before we even met, I asked her to translate a tribute to Dr. Fedorenko’s mentor, Dr. Andrew A. Novik. It was a beautiful tribute, but it was all in Russian. She and her friends translated the video so quickly! Dr. Novik first performed HSCT on MS patients in 1999. He was a true pioneer and thought about treating patients and not just their diseases. For over 35 years, he was able to help many patients and protect them from their inevitable fate of becoming totally disabled. Dr. Fedorenko has the same philosophy, skills and dedication to his patients as his mentor, Dr. Novik! He will do whatever he can to help improve the quality of life of his patients.
and she took a photo of the two of us : )
I met a lot of really wonderful people when I moved to the 2nd floor.
In this photo: Brett, Glenn and his wife Penny, Kris, Dr. Fedorenko popped in for the photo, my brother in law, Robert, me, Vicki, Gunn Heidi and Mark, Vicki’s husband. It’s hard to tell from the photo who is the patient and who is their loved one who accompanied them to Moscow.
Glenn and his wife, Penny
Vicki and her husband, Mark.
Hatice and Brendan on Brendan’s New Life Birthday!
Chad and Misha!
Brendan the day before I left.
Gave him essentials like a few extra zip locks and all the duct tape I had left before he went to isolation!
Since I experienced severe fatigue after isolation, I’ve only blogged once. I’ve been home now for two weeks, but am going back in time to when I was still in Moscow. I’ll be updating more regularly now that I’m feeling so much better.
One of the most important days at the hospital was the day I received my stem cells back, July 3, 2014. This is a photo of me receiving my stem cells.
This is the monitor that was in the room. I felt fine, although I was seeing black spots. I did not know my blood pressure was all over the place during the transplantation. Dr. Fedorenko ordered an ECG the next day and everything was fine.
This is the video that Matt, Andrea’s husband took of my stem cell transplantation. Dr. Fedorenko held my hand during the procedure. I asked about the Russian words for breathe in, and breathe out – Dookh – Venab. My heart was fine, my stomach was a little upset. It was easy.
These are the photos of the celebration a few hours after Sheila and I received our stem cells back. It was so much fun! Throwing the liquid nitrogen from the bucket that the stem cells were stored in are a major part of the stem cell celebration. It really was a joyous occasion. Sheila was just as excited as I was!
This was just a little bit of it of the liquid nitrogen.
This one is fuzzy, but I love it anyway.
I scared Sheila a little bit with this one. Dr. Fedorenko enjoys every minute of it too!
I tried to get every bit of the liquid nitrogen out of the bucket!
Happy, Happy, Joy, Joy! It was a festive celebration. I had a bar of chocolate for everyone to share. I missed the next two birthday celebrations because I was in isolation. I could not even hear anything! The next two I got to experience were after I got out of isolation and the celebration food spread was over the top!
This was Gro Larsen’s New Life Birthday celebration! Look at that throw!!!
I’ve been on a plethora of medicines since I’ve been in Moscow. I’ve had no problems with any of the medicine or testing…except the MRI bothered my lumbar spine and was easily remedied with 800 mg advil and an ice pack.
There was no problem with the neupogen shots, steroid drip, chemo, or chemo rinse. Constantly using the bathroom was an inconvenience and disturbed my sleep, but it was insignificant in the big picture.
I’ve been taking:
Flucouazole 200mg/day which is an anti fungal
Ciprofloxacin 1000 mg/day which a broad spectrum anti bacterial Bactrim 960/mg/day 3x/week which is synthetic antibacterial (used in the treatment of various bacterial infections)
I eat extremely healthy all day, but at night due to the steroids, I snack like I have not eaten for days! I talk to myself occasionally (often : ) and still try to fundraise and help my family from afar. I’ve had mostly good days. There was one night that I was not able to sleep well at all, which is very unusual for me. I finally fell asleep at 5 am, and was gently woken by nurses at 8:30 am for my morning testing. I am always able to get back to sleep for a few hours if I need more rest. But, I was awake for the day! It was a miserable day for me. But, it’s only happened once. I typically don’t take naps, but I expect that will change upon my return home to begin my recuperation. I’ve been fortunate that the whole procedure has not been as difficult as it has been for others. I’m still expecting a longer, more arduous recovery than most because of PPMS and my level of disability upon my arrival in Moscow. I’ve written down every inspirational message from friends, family acquaintances and strangers. The one that I think about most is Go! Fight! Win! This just sums up my plans perfectly. There is nothing more important that can be done by me to improve of the quality of my life and that of my family than to restore my daily independent functioning and to gain strength.
Today, July 12, 2014, when Dr. Fedorenko came in for his daily visit he had some delightfully surprising good news. After less than a full week in isolation, my bloodwork showed promising results. Although, all our medical information is in our official chart which we’ll be given a translated copy before discharge, Dr. Fedorenko always brings in a hand written copy for us to discuss.
July 12, 2014 – Hemoglobin 83, Leukocytes 2.4, Platlets 199
I was exercising when he came in. Hairnet is to control ALL the strays hair that are finally coming out! Always try to take photos by my daughter’s fish art!
So, the good news was, I was no longer in isolation! I could leave my room wearing a mask, take a walk down the hall, even visit friends on the 2nd floor : ) I did not want to go outside my first day, having fallen out of my bed the night before. I did not get hurt, just bruised a bit. Was trying to retrieve a paper that I dropped. Still dropping many things : (
Since the door with the ramp is closed on weekends and after 5, I did not want to take the risk of the stairs by myself just yet. But was so delighted to see some friends I’d not seen for a week and meet some new patient arrivals!!!!!! BEST. DAY. EVER. maybe?
I can not stress enough how much Dr. Fedorenko cares for all his patients. He is a brilliant, caring, warm, thoughtful, loving man and hematologist who should be cloned as soon as possible. There is no personal, medical or procedural question that I have ever asked that has not been explained fully and at length to me. He had initially asked me to write down any questions I had for him. He did not care if they were not well worded, small or inconsequential or extremely important to me. He answered questions that I was just curious about as well. He always took the time to make sure I understood what I was trying to ask. My handwriting unfortunately has gotten extremely poor during the last few months due to PPMS. I was writing down my questions, had trouble reading my own handwriting and my responses from Dr. Fedorenko. Light bulb finally went off and I started typing all my questions with the date above it for him. He lets me take the time to type his answers. I can read them now : ) He answers questions from me and from my family. He is a gem. It’s also really easy to make him laugh which delights me. With not much of a body that functions well, my sense of humor and being able to make people smile is pretty much all I have going for me….FOR NOW!
Still furiously fundraising, but ready to go home in ONE WEEK….
GO! FIGHT! WIN!
Thank you, Anne! I think about you every day and how much you always inspire me. I can’t wait to see you!
Thank you EVERYONE for your donations and support. There is no way we could have done this on our own! Hugs and love to all of you ❤