Heathers Multiple Sclerosis Journey
Hematopoietic stem cell transplantation
(HSCT)

BACKGROUND CLICK HERE
Read about Heather's doctor Richard Burt here.

My name is Heather Nicole Burke.
My Grandpa by marriage started this page for me on his web site.
And this is a synopsis of my battle with Multiple Sclerosis and the treatment I will be receiving.
All entries will be on this page listed as the newest first.  If the file gets to big, I will archive it and start a new page.
If you are new to this page, start at the bottom and work your way up.

Monday April 23, 2016

My official two year follow up...

I went over the results with both of my doctors in Chicago to learn that my brain shows significant reduction in lesions size along with many of my old lesions completely gone! On top of that normally once MS has destroyed brain tissue it turns into what is called a black hole, basically dead brain tissue. I have been fortunate enough that the tissue in my brain has healed it self and I have ZERO black holes and with my disease stopped this is a fear of the past.

My thoracic MRI remains stable. There has been no new or enhancing lesions since my transplant in 2014. I have one long lesion that is still healing but shows that the size has decreased In the last two years. Time will only tell how much more my body can repair this on its own but at this rate things are looking very good.

My cervical spine is also showing signs of my lesions shrinking on my spinal cord however this is where I have always had extreme damage from MS. The worst of my lesions spans from c2-c3 and in its course of shrinking over the last two years has caused some spinal cord narrowing. Only time will tell how this will effect my recovery as my body is still trying  to repair the damage on its own. Again things are heading in a great direction.

The main focus now is my leg and my hand. They are the last of my symptoms that cause me much difficulty in daily life. A new plan of resetting the specific muscles that are being difficult during my recovery with Botox and Zannaflex plus even more extensive physical therapy is on the table for me to decide on in hopes of getting the ball rolling to a full recovery. It's 12am and my flight home with the kids was super delayed we don't land until 2 am :( so I will try to do a more detailed update in the next few days once I settle in. Thank you for all of the love and support ❤️ #stopMS #HSCT #wefoundacure

-Heather
Monday April 6, 2015

Home 10 months post HSCT

As I write this I am sitting outside (in 87 degree weather) watching my kids run around at a local park. I can't help but feel like this is a dream. A year ago today I started pre testing for HSCT with Dr Burt in Chicago. It hasn't even been one year since my actual transplant and the ways my life have changed have been nothing short of a miracle.

Recovery after HSCT is a rocky road but well worth it. It is very scary to feel old symptoms when an infection or illness presents. It is a vivid reminder of what life could have been like. It is close to heart breaking to think that every MS patient isn't given this as an option to consider.

It would be easier to list what has changed then type out a long paragraph for you all to read.
 

What still remains: What has disappeared:
Hip flexor weakness in right leg
Hamstring weakness in right leg
Quad weakness in right leg
Trouble with a walking pattern
Trouble with balance (Low fall risk now)
Weakness in right hand grip
Foot drop
Numbness in right hand
Numbness in left hand
Numbness in face
Numbness in chest
MS hug
Fatigue
Optical neuritis
Eye lid twitches
Heat intolerance
Hand eye coordination disturbance
Bladder retention and incontinence
Slurred speech
Delayed thoughts
Forgetfulness

In a nut shell almost all of my cognitive and sensory issues have completely gone away. My motor function issues still remain but gradually improve day by day (except my foot drop, that is about 95% improved) Dr Burt says two years is the magic number for a baseline of recovery. I am anxious to hit that milestone.

Recovery is not easy. It is a lot of ups and downs emotionally and physically. It seems like as symptoms start to improve they actually worsen first. Two steps back three steps forward. Sometimes to the point that the pain or loss of function is so much worse then before HSCT. This lasts about 2-4 weeks and then the symptoms starts to fade very quickly (within a week or two). The most painful reversal of symptoms so far has been the muscles controlling my foot that I no longer have foot drop in and my right hand which had motor and sensory symptoms. At times the pain seemed unbearable... But it was worth it.

I can now take my children to school, watch them play at the park, I can stand long enough to wash my own dishes and do my homes laundry. I can go to school events for my children, I can go grocery shopping. I can do things by myself! I no longer need someone with me 24-7. I am able to be a mom again... I can not run around or walk like an average person but I can do it in my own way.

Emotionally it is so hard for me to accept why didn't any one tell me about this sooner? How could anyone of the many doctors I flew all over the states to be seen by not mention this? If I just would have had HSCT a few months sooner I would be an average regular person right now free of all of my past symptoms... That last flare left me with this severe damage that effects my leg. It's hard to accept... However seeing the number of people that have found HSCT since I started sharing my story last year has helped make my recovery much easier. Knowing I have helped someone else rid their life of this horrible disease feels pretty awesome.

If I had to do it all over I would have had HSCT done after I failed rebif and after failing Copaxone. When it became more difficult to "fake" being normal.

I hope that message reaches at least one more person and saved their future also....

Don't wait until it's too late...

#stopMS

Until next time! Xoxox
-Heather

 Wednesday February 18, 2015

Home 8 months

I received some great news at physical therapy today! I have officially gone from a moderate fall risk to a low fall risk according to the Berg Balance Test. I have done this test several times since my diagnosis of MS but this time was so much different, it was much easier!

Next week we will continue with some more evaluative testing that I will post the comparisons of before and after transplant as well as now once I have the results.

Physical therapy is very different now compared to before HSCT. When I am working on something that was limited prior to HSCT it is not just physically overwhelming but also mentally overwhelming. It is hard to explain. The best way I can put it is when my PT would be to lift my foot (working on foot drop) in my head I felt like I was staring at a blank sheet of paper. I couldn't figure out how to do it. After she would physically make my foot do it while I watched and concentrated very hard along with trying to lift along with her assist I would become puzzled and confused. For the past 8 months I have been working on lifting my foot. Sounds so silly to hear while I'm typing that, to so many it's just a lift of the foot. To me it's the door to opening my world up to bigger and better places... Anyway back to my point I am thrilled to report after PT 2 times a week and daily exercises since I have returned all the hard work with my foot drop (which caused me to trip consistently while walking) has improved significantly, I have a heel strike now! What was once one of my most feared MS symptoms is now becoming a distant memory. The confusion stops after a few days of training each piece of my gait pattern. Next puzzle piece to put in place will be my hip flexor weakness!

After my scare with the complications from the thyroid medication this certainly helps assure me that I am on a very great path in my recovery. I just really wish I would have had HSCT done sooner, before my MS progressed....

Will update again soon!
-Heather

Thursday January 29, 2015

 Home 7 months post.

Three weeks ago I was preparing a much different post for all of you. It was a post about my MS returning...

Last I posted in December I was sick with a horrible bout of sinusitis. I had been warned it is not uncommon for old symptoms to return during illness post HSCT but this felt different.

My leg which was effected by damage caused by MS prior to treatment was stiff and became even more stiff over a span of two weeks, my right arm became weak, my vision in my right eye became doubled. After a second round of antibiotics my sinusitis was gone but these symptoms continued to worsen. Panic slowly set in that my MS had returned. It just didn't add up, it felt similar to how I felt prior to HSCT but not exactly the same, I noticed they were worse in the morning but improved throughout the day (total opposite of MS), I had no fatigue, I had no tingling or numbness.

After a week of this with no sign of infection the realization that MS may be creeping its way back became a reality as my vision blurred more and my weakness became more dominate in my arm. I spoke with Dr Burt's office who arranged for me to come out to be evaluated as soon as possible to figure out what was wrong, However the day after I spoke to them everything changed....

I went to visit my Ear Nose Throat specialist in hopes she could confirm or rule out a sinus infection for certain. After a CT scan of my sinuses, infection was ruled out. After her I visited the eye specialist that has treated me for optical neuritis for the past 4 years for his opinion on my vision. After an extensive exam and new visual field testing he assured me this was not optical neuritis and my vision had improved greatly since HSCT. He assured me this was not MS related but unsure of what could be causing the double vision. Frustrated, panicked and overwhelmed I felt the best hands for me to be in were in Chicago with Dr Burt and his team until that night I spoke with a friend who is a pharmacist about what was going on. I mentioned that I had been on synthroid in our conversation at which point she told me to contact my doctors immediately about rare serious side effects caused by synthroid....

After some blood work and stopping the medication synthroid was determined as the culprit for my current issues at the time.

I had been on synthroid for hypothyroidism since September, I had a few issues with the dosing, it had to be lowered frequently but once I reached a low dose it worked well for me (or so I thought). My reaction to the synthroid was masked by the sinusitis for almost 3 weeks, what I thought was sinusitis bringing back old things was actually a reaction to synthroid that was building up slowly but horribly.

After stopping synthroid 14 days ago I have completely stabilized with all of my similar to MS symptoms slowly disappearing. My vision improved almost immediately after stopping the medication and is now about 95% back to normal.

Scared is not the word to describe how I have felt the last few weeks...

Today I am happy to report I am seeing the true gains of my strength and endurance post HSCT (and post synthroid). Today I went grocery shopping, took my toddler to a music class, did homework with my kindergartener after picking her up from school, made dinner then did something that was just a dream a year ago.. Took my two amazing children to the playground to play....

My MS is still gone.

While going through this situation and now feeling better it really made me see how much my quality of life has improved. As I have said before my biggest and only regret is not having HSCT done sooner.

I have a long way to go strengthening my leg that MS destroyed. Although big issues, my leg and a bit of balance issues are the only daily reminders that I ever even had MS. I am confident that this was a speed bump in my journey of the beginning of my new life... Life after MS

Sunday December  21, 2014

Home around 6 months

I caught a nasty cold that has made some old MS symptoms act up (mostly just my weakness in my right leg with a hint of the old foot drop) I have been assured numerous times that it is super common for old symptoms to act up during illness and completely temporary. I trust my doctors but it is still a little scary. I do want to point out when I became sick prior to transplant ALL of my old ms symptoms came back full force and almost always left me bedridden. As I mentioned its just the leg and it is a mild weakness (I am still functioning and very much enjoying the holiday season in New York with my children and family.)

I'm starting to get over the cold now and my leg is going back to post HSCT slowly. It has really made me realize how fortunate I am to have had HSCT to stop my MS. The feeling of not having worsened compared to last Christmas is an amazing feeling. I truly wish I would have had my HSCT sooner, if I did there would be no indication that I had ever had that horrible disease. But on the other hand if I had had it sooner I would not be able to share with all of you how waiting until you are "that bad" is a decision you need to carefully weigh out if you are considering HSCT, What will the next flare rob you of? That fear has finally gone away for me and I could not be more grateful.

I can't wait to start the new year on my venture to strengthen my weak leg and improve my hair before I head back to Chicago in the summer for my one year follow up! I'm determined to make it down Dr Balabanovs hallway with a better gait pattern then my last follow up.

Happy holidays everyone!
Heather
#stopMS

Wednesday December  17, 2014

Home 6 1/2 months.

Hey everyone! I'm so sorry it has taken me so long to update! My second day in Chicago (12/4) was super busy, packed with appointments and I flew home that night so I could quickly finish sending out the gifts for my Moms with MS Christmas charity. Things have finally settled down and I am preparing to travel to New York for Christmas. I received copies of my MRI results today from my follow up also!

On the second day of my follow up...

First I visited the psychiatrist that cleared me for treatment months ago to tell her how great things have been! I walked several city blocks (had my cane with me just incase) from her office to Northwestern to see Dr Burt (I WALKED!)

I went to see Dr Burt where I ran into a few patients I had spoken to online in the patient run support group ( www.facebook.com/groups/burthsct ) that are seeking treatment. It was nice to see how many people are going to get their futures back. Dr Burt asked how my MS was, I replied what MS? He also asked how many times I have needed to be hospitalized for MS related incidents since I returned home, I felt the extreme puzzled look on my face hit hard because for the first time since I was diagnosed I had not been to the hospital for MS anything since I left Chicago when I had my HSCT. He told me my MRIs had no new lesions and no enhancement, I smiled and thanked him for saving my future before he left. I then did the functionality testing with his nurse I had done at my pre testing appointment back in April. A test to check the use of my hands and arms (my right arm and hand function has improved significantly and is now in an average range of function). My cognitive function has improved slightly but I did not have much (if any) cognitive issues prior to HSCT so this result was expected.

After my Northwestern visit I went to Rush University to see Dr Balabanov. I greatly enjoy meeting with Dr Balabanov, he is an amazingly smart man and a wonderful neurologist. At his appointments he watches you walk down a long hallway to help determine your disability score. At my past 3 visits with him I had made the walk unassisted about three car lengths in distance before needing help. This time I made it to the end of the hallway and back unassisted (about 100 car lengths to the end and back). I was in shock myself I made it that far (and back) I hadn't realized myself how much I had improved! My walking pattern is a mess but it is improving with physical therapy and hard work everyday! I am so anxious to get to my one year mark! Getting rid of the constant exhaustion of MS is amazing and has opened a lot of doors for my body to start healing.

After this appointment I went straight to the airport and flew home.

Fast forward to today...
I received my MRI reports from Dr Burt's office this afternoon which stated NO NEW LESIONS NO ENHANCEMENT and STABLE COMPARED TO MY MRI IN APRIL! I am a firm believer that MRI reports should hold 50% percent of determining what's going on with MS disease activity the other 50% should be how the patient is feeling. I feel stronger and my MRI report agrees, gives me hope for a future with my kids :)

The damage MS has caused in my brain and spine is still there but my disease has been stopped for the first time since I was diagnosed I finally have a MRI report that shows hope for the future (I'm considering framing them).

As I stated before my only regret about HSCT was not having it done sooner. Last year at this time I remember thinking in my head this will be the last Christmas I will be able to walk unassisted well yesterday I went to see a doctor I haven't visited since September (two months post HSCT) she commented on how fast my hair has grown and asked where my cane was. When I told her I didn't need it anymore her smile went from ear to ear.

Merry Christmas!  Heather

Tuesday December  2, 2014

6 months post HSCT

 

It's hard to believe time has gone so quickly. Normally this time of year would be very emotionally draining for me. The memories of how much more I was capable of doing the year prior and how much had changed since then always brought me to tears. At this time last year I had traveled to numerous "MS specialist" to try to figure out why I had flares so often and each one was leaving me so much damage. I was confined to my home most of the time, I needed help with everything. I was mentally preparing myself to enter assisted living at only 26 years old with two children under the age of 5 at home...

I accepted what MS was doing to me and THOUGHT my future was sealed. I emailed Kate at Dr Burt's office (she is such a wonderful woman) she sent over a form for me to fill out with my history of MS and here we are today. One year after contacting Dr Burt's office my world is full of hope. Since the day I was diagnosed (March 25th 2011) I had several debilitating flares a year since that awful day. I had well over 10 treatments of 1000mg IV steroid treatments (solu-Medrol) a year. I started losing teeth (three molars just shattered at random times), dealing with necrosis (deteriorating) of my hip, and much more from side effects of the steroids.

Every year the holidays became harder and harder for me to physically handle. Between shopping and wrapping and setting up the morning for my children I was drained. I was no longer able to venture to the store for the big sales and relied a lot on online shopping. I realized how fortunate I was that I could afford to Christmas shop, pay for all the medications I needed and take care of my family when so many others were struggling but should most certainly be enjoying their holiday, no dreading it. I started a Christmas charity for moms with MS, With the help of friends and family we provided 29 children pre wrapped presents off of their Christmas lists delivered to their mothers doors. I avoid posting fundraising on this page because I like to keep my posts strictly about my HSCT treatment but I could really use some help this year providing the larger amount of families we are helping this year. Any donation big or small matters greatly.
You can donate securely through paypal here https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=NMJZMYX8UCZE6

Or contact me directly at MS_MOMS@yahoo.com  for mailing address for checks or gift donations.

If you know someone in need please direct them here https://www.facebook.com/MSmoms

I will update as I have in the past during my 6 month follow up over the next couple of days. Happy holidays!

Xoxo-Heather

Thursday November  27, 2014

Home just shy of 6 months post HSCT

Happy thanksgiving everyone!

Today I asked my children what they are thankful for this year, my 3 year old son screamed turkey turkey turkey and my daughter said she was most thankful for me, her mommy. Of course this made my heart melt but what she said after that instantly brought tears to my eyes. She said she was thankful for the doctors and the yucky medicine that made my hair fall out in Chicago because it made her mommy better. She continued on about as my hair grows back I get stronger and can do so much more fun stuff with her and how she can not wait until my hair is so long it touches the floor. For my 5 year old to notice the changes this life changing treatment has given me makes every moment of treatment and recovery that much more special.

To say I am thankful for Dr. Burt, his team and the staff at Northwestern is an understatement. I would also like to thank all of the generous donations to my gofundme page and all the love and support during my treatment and recovery.

This year has been the most amazing year for my family. I am so thankful for this entire year. The good, the bad, the hard, the easy, everyday this year has put me on a path to an amazing future without MS robbing me of anything further and given me the strength to help others ‪#‎stopMS‬.

Again Happy thanksgiving everyone! I will be heading to Chicago next week for my 6 month follow up. I am anxious to see the updated MRI results post transplant and will update you guys while I am there.

Xoxox-Heather

Monday August  25, 2014

Home day 67

It's my birthday!

The last few weeks have been a coaster with my thyroid. The conclusion was thyroiditis which is not a permanent issue! They put me on a few news meds and I'm doing much better.

I really want to get the the best point of this post so I'm going to leave a lot of the past few weeks details out (it mostly consisted of me dealing with thyroid, NOT MS issues)

Today is my 27th birthday, the last few years I dreaded this day. In my head this day and on the anniversary of my day of diagnosis every year I would think back to how much more I was capable of and how much I had lost since then. Today that is just simply not the case anymore....

Today I woke up bright and early 6:30am to be exact. Got both of my kids showered dressed ready for school (pre-school and Kindergarten) packed the folders and lunch into the backpacks and headed out the door. My son has a cold (which I also caught last week and still have too) so last minute I decided to keep him home with me today. We dropped my daughter off then went grocery shopping and came home to clean and play. After lunch, two loads of laundry and unpacking our suitcases (we flew up to New York for a wedding last weekend) it was time to pick up my daughter from school. We picked her up came home did some homework then headed out to their tumbling class for an hour. We came home I made them a nice home cooked dinner and now they are watching Shark Boy and Lava Girl while I type this. Keep in mind I'm battling a thyroid with a mind of it's own and a pretty bad cold while doing all of this.

This has been the events of my 27th birthday, this has been my best birthday ever. I can not put into words how amazing and happy this day has made me. Not even 4 months ago could I imagine I would be able to do all of these things in one day, I was lucky if I could get to the grocery store without being a mess for the rest of the day.

I personally chose to be treated with HSCT for my children, my two little loves that mean more to me then anything, my reason for fighting through all of those horrible days of the past that are now becoming a distant memory. I wanted nothing more then to be able to be the best mommy I could be for them. I'm finally seeing that as a clearer picture every single day.... HSCT was the best decision I have ever made not only as a MS patient but as a mother. I am on the road to a much brighter future with my amazingly awesome little loves.

Friday August 8, 2014

Home day 49 (WOW that went fast)

It has been so long since I have posted! I wish I was able to make this post as positive as my last with the videos but I have hit a speed bump in my recovery....

A few weeks ago I felt like something was stuck in my throat but I was not sick in any way. No runny nose no cough no sneezing, nothing. So I went to my fabulous Ear nose Throat Specialist (who happens to be a northwestern alumni, small world) she suspected a thyroid issue. She contacted Dr Burt and my primary care doctor right away.

Over the two weeks my heart beats very fast when I walk even a few steps, My joints hurt horribly, my shoulders and hips the worst, I cannot sleep! It's terrible I am up for days at a time on two hour naps maybe once or twice a day. All of my muscles are weak (not MS weak, it feels very different and is all over as opposed to the areas that have always been weak caused by MS). On top of all that I have been super easy to make angry and my anxiety has been through the roof, I'm pretty sure even all of you that just know me from this page are aware that is not my personality whatsoever. I have now added a medication to keep my heart calm and the attitude along with anxiety calmed.

Long story short my blood work came back with very high thyroid levels. First my PCP said this was possible hyperthyroidism and sent me to the endocrinologist. Who has now come to believe I actually have Graves' disease (when you Google this note my eyes aren't bulged out and I'm crossing my fingers they won't!)

I have been in bed and taking it easy to avoid hurting myself from the muscle weakness and trying not to aggravate the joint pain to much.

Both my PCP and endocrinologist explained to me the thyroid is sensitive and part of the immune family. With HSCT I shocked the thyroid a little to much for it's liking and that this is all temporary. Which I agree because I am already starting to feel a tiny bit better.

Enough of the not so great news and on to the fun stuff! My hair is GROWING! I have some peach fuzz going on! It just popped up one day and is growing quickly, yay! My MS is still stopped! My numbness is still gone and even with all this stuff going on nothing has acted up. I'm pretty bummed I haven't be able to get to physical therapy to work on my walking and strengthening my leg but I will get there as soon as I can.

My platelets, WBC and HGB have all been in range since my last post :)

I will update once anything changes.

Wednesday July 22, 2014

Home day 32

Hey everyone!!! I have been busy with my children, they both have had colds the last week or so and I have been doing everything possible to avoid catching anything while taking care of them. They are all better now thankfully

HSCT update! I am getting stronger everyday, my endurance is building and I can get through the day much easier then before HSCT! My gait pattern is a work in progress. I think it will take a very long time to retrain myself to walk again. But I have the best physical therapist so I'm not concerned about it

All of my sensory issues like numbness, tingling, and skin sensitivity are all completely gone. Spasticity and muscle weakness still remain in the leg that has been effected by ms since day one... it's a work in progress, one day at a time!

Last Monday (July 14th) was my last weekly blood work. Now I go every other week. Mondays results came back:
WBC: 5.4
HGB: 11.4
Platelets: 263
Kidney and liver good!

My fresh new immune system is following the plan! I'm back on a normal healthy diet now. Not eating out much still because I feel more comfortable preparing my own food to avoid germs.
Besides that daily life is getting pretty close to the old routine prior to treatment (with the benefits of my MS being stopped and not feeling like I'm carrying around those bricks still).

Here is a link to my walking patterns before and after HSCT so far. Watch my right leg. I am getting faster and can control just a little bit better how I circumduct (swing my right leg out to the side to step) when I walk.
http://youtu.be/2LL_SQRpxpc

Here is a video of the function I regained in my hand...
http://youtu.be/JmgY-jKBEPQ

-Heather

Saturday July 12, 2014

Home day 22

Hey everyone! Sorry for the delay in update, it has been a busy week for me.

My results from Mondays lab work came back really good!
WBC: 4.5
HGB: 11.2
Platelets: 362

My hemoglobin and platelets are in normal ranges again! My white count continues to climb while my body rebuilds my new immune system with fresh Cells, ones that have no memory of how to attack me, not like the old cells that have caused so much damage in my brain and on spinal cord over the years.

My chemo fatigue is getting better. I still rest during the day and try very much not to push myself to far. As long as I have a good nights sleep every night I seem to stay on track with my energy. Energy conservation is still a huge part of my life, most of us already know when you push yourself to get somewhere we need a plan to get back too...

Physical Therapy... PT is going amazingly well. I'm still finding new muscles working (after HSCT) that I had no idea didn't work before. Walking is getting easier in regards to endurance, my gait pattern however needs a lot of work. I have been blessed with the most amazing physical therapy team. I still get confused when trying to correct my old bad walking habits, it is pretty overwhelming but having a great PT support team makes such a huge difference and really helps not only physically but mentally too.

I have a before video of my walking and a video we took on Thursday I have been meaning to splice together to show the stages of my walking recovery but I have not had the time! I will try to get that posted this evening.

Have a great weekend!!
-Heather

Thursday July 3, 2014

Home day 13
(Wow tomorrow is two weeks that I have been home!)

I had a very exciting day at physical therapy today! We evaluated my walking with a Dynamic Gait Index, we compared the results to my results prior to HSCT. Before I was a 3 out of 24 and had tested at a 3 for over a year, today I was a 10 out of 24!!! With a lot of training and physical therapy my future is looking very bright. I still can't believe I am truly on a path to regaining my life back but I see and feel the reality of it everyday for myself! I am blessed to have the most amazing physical therapy team.

My fall risk also improved! Before HSCT my fall risk was medium according to a berg balance test. Today I tested as LOW fall risk!!!

My right leg still gets fatigued but not quite as fast. I have a lot work to do to build up strength and endurance also to correct those old bad habits in my walking patterns.

I received my blood results from Mondays blood draw.
WBC: still at 3.3
HGB: 10
Platelets: 380!!

My platelets have jumped up very quick. My nurse in Chicago said sometimes the neupogen can cause this. I have another lab draw on this Monday again.

My chemo fatigue is improving. I am able to do a little bit more each day. I'm standing by the saying slow and steady wins the race....

PT again on Monday. I will update after!

-Heather

Monday June 30, 2014

Home day 10

The weekend went well until Saturday night, first let's start with the good stuff....

Saturday was a great day! I spent time outside with the kids without the heat completely kicking my butt and enjoyed my sons birthday party without having to completely rely on my family and friends the entire time. I was able to participate in one of my children's birthdays again, I can't express what this meant to me.

Saturday night I started to feel freezing cold but my face was hot, I felt a fever coming (when I had MS fevers were my biggest a downfall.) The psuedo flares caused by the rise in body temp in the past would make my MS go nuts and leave me bed ridden, unable to use my arm, legs, hands and blur my vision in my eyes until the fever was broken.

This time the rise in temperature didn't put me down nearly as bad as it has in the past. Yay HSCT!

I took took my temp (99.5) so I took Tylenol to prevent it from going up (like the old days). My temp fluctuated between 99.1-99.9 from Saturday until today (Monday). I stayed with the Tylenol every 6 hours, if I let it go a little more than 6 hours temp would start to rise but tonight I'm at 98.6! Symptoms are all gone and I'm back on my road to HSCT recovery.

No physical therapy today since My temp was up this morning but I had to get the weekly blood work done. The team in Chicago should be able to tell if I have a infection from the blood work or if it's something else. I will update you all when I know.

Even with the mystery rise in body temp I did notice my fatigue is improving. The chemo fatigue is very different from MS fatigue.
Also my right leg was the most effected by my MS, before HSCT if I was to lay on my stomach and try to lift my foot to my butt I was lucky if I had enough strength to lift it once maybe twice on a amazingly good ms day (RARE). I can now do it 5 times without a issue :) In a week I will increase it to 7 and possibly add more at home exercises. I'm still trying not to over do it!

I will update when the blood results come back!
-Heather

Friday June 27, 2014

Home day 7

I had physical therapy today! We focused on evaluating my muscle strength. The strength in my right leg and right foot has increased by 1 point since my last evaluation prior to HSCT! Since diagnosis I have never been able to lift my right leg up long enough to complete a manual muscle test, I can now! I can not wait to see what the next year of recovery brings! The muscles that have started working again (that haven't in years) still burn a little bit when they get a lot of use but I can feel it so that's perfectly fine with me.

Now that I can move my leg and foot a little bit better when I walk I still get really confused. Physically I could walk with a more appropriate gait pattern but I can't figure out how. It is going to take a while to retrain my brain and body how to walk correctly. All the pieces are there now but they have to be put back together, slowly, and learn how to work together again.

On Monday we are going to test my balance and walking in more detail and compare that to my prior HSCT scores. One set of tests for each appointment is a lot for me still, so splitting up the different evaluations helps makes the results more accurate and keeps me from over doing it. I did rest all day prior to PT so I would have my energy. I will post updates after my appointment on Monday.

Have a nice weekend!
-Heather :)

Thursday June 26, 2014

Home day 6

Today was a stay in bed kind of day. I over did it yesterday with two appointments and housework, I made myself super tired. But my MS symptoms didn't act up, that's a first! I certainly need some time to build up my endurance again. I slept soundly from 9:30 last night till 8:00 this morning. My heat intolerance is a little better but still there, I'm hoping this will improve over more of my recovery time.

I received my blood test results! My immune system is getting stronger!
WBC: 3.3
HGB: 9.9
Platlets: 61

I'm very excited about my platelet count rising. When I was in the hospital I scratched my leg very lightly and it bled a lot more then it should have, come to find out my platelet count was 10 and I needed a transfusion. So 61 makes me happy!

My PT evaluation is tomorrow! I can't wait to see what I can do and what has changed.

Will post after physical therapy tomorrow, going to bed early tonight.

-Heather

Wednesday June 25, 2014

Home day 5

No bad dreams last night!
But I did wake up to two very interesting things... My skin is so dry, one of my arms looks like I'm peeling from a a bad sunburn that has healed but it is only on the one arm. My lips are also really dry even with constant lip balm being put on.

And the tiny little bits of hair I grew back between mobilization and now are gone! Last time it took a few days for my hair to fall out, this time was very quick.

I'm not bruising nearly as easily anymore, I'm still waiting on my lab results from Monday but I think this is a good sign my counts have continued to climb.

I drove today! Granted it was only less then a mile and a few blocks away but I haven't driven in almost a month so it was exciting for me. On top of that I was able to walk to the car, get both the kids in the car, and get myself into the car without being exhausted! I'm fortunate that my children are very aware that mommy needs a little extra help sometimes so they climb up into their seats on their own just fine but in the past few months by the time I even got them to the car I needed to sit for a second, then I would buckle one child in, sit for another second, buckle the other child in, throw myself into my seat and just rest for a few minutes before leaving. WELL today I walked to my car with my little loves they climbed in their seats I buckled one went around buckled the other and sat down in my seat. As I turned on the car I realized what I had just done, with no assistance, no tripping, no falling, no fear. I did a task I have struggled with for years relatively easy. The hope of bringing my children to the park and playing with them is becoming more of a reality day by day... HSCT is a very serious medical treatment that should not be taken lightly (no medical treatment should be taken lightly, always outweigh the benefits and risks for YOURSELF before making a choice) but after experiencing my own improvement in my quality of life little by little everyday it makes me even more determined to spread the word to others. Please take a moment and sign my petition, please share with your other MS groups and anyone that wants to #stopMS. Sign and share :) Feel free to share my page too, anything to spread the word!

http://www.change.org/petitions/national-multiple-sclerosis-society-multiple-sclerosis-patients-want-to-know-about-hsct

Thank you all so much for your support!

-Heather

Tuesday June 24, 2014

Home day 4

Today was a really nice day. I started to kick it up a notch and do some stuff around the house as I normally would have before transplant.

I did some laundry and put it away, wiped down the counters in the house, did the dishes, organized the kids play room, for the most part I had a pretty average day with a few added moments of laying down for 15 minutes here and there to get my energy back up and not run myself into the ground.

I have been having some pretty vivid dreams randomly. They started in the hospital but weren't very often so I didn't think anything of it but I heard from a few other HSCT veterans this is common for a few weeks after transplant.

With things calming down and recovery coming along I figured after my first week home I will start posting weekly and if anything new occurs. Maybe starting Friday? I will see how PT goes first.

It's pretty late and I'm still up tonight! But I'm tired. Goodnight!
-Heather

Monday June 23, 2014

Home day 3

Today starts my first day of blood work and my first time leaving the house since I have been home (17 days in the hospital before that). Since I'm in Sunny Florida I'm protecting my skin with SPF 50 lotion especially the top of my fuzzy head. Last time I came home after mobilization back in May, I had forgotten to cover my head a hand full of times and poof heat rash all over my head. I won't be making that mistake again. My skin has always been sensitive but more so after chemo, it's a little dry now too which it was never like before.

Also I have a good amount of bruises! I know this is from my blood counts being low, but I haven't bumped into anything or fallen (the nurses at prentice would be so happy to hear that).

I am being very cautious with my movements until I find out the results of my platelet counts, when I was in the hospital I had scratched my leg with my fingernail on accident, no biggie, but then I noticed it wouldn't stop bleeding and it was just a scratch. Granted my platelet count was only 10 at that time (platelets just under 40 when I discharged) but it still showed me the importance of being cautious while my body recovers.

So here I go, time to get ready for my first day out in the real world without MS, just to get blood work haha it's the little things in life.

Will post again tonight

Home day 3
10:30pm


Today went well. I had my labs drawn this morning came home rested for a bit then went to see my primary care doctor (PCP) to give her a update on my treatment and tell her I was home (I scheduled this before I left for HSCT to make sure she was kept in the loop when I returned home for my recovery).

I received my full discharge summary after I left her office so I will fax it over to her in the morning so she can understand what I had done and what needs to be done for my care during the next year and most importantly how to contact Dr Burt.

I still wear a mask outside of the house. I have been so fortunate to have handled HSCT well and continue to regain so much of myself back everyday I refuse to take a chance on an illness or something that could have been prevented taking me a step back. I am following all of my discharge instructions to the T... I feel very strongly about this, it's what the team at Northwestern asked of me and after they have given me my life back I would probably do anything they asked of me out of gratitude.

I'm not eating out (unless I know the person preparing my food and they know about my transplant) this isn't required but I feel better about it.

I wash my hands a lot during the day and there is bottles of hand sanitizer all over my house.

Someone had told me to switch to a soft toothbrush for HSCT whoever it was THANK YOU! My gums have been super sensitive and oral hygiene is super important when you go through chemo. I switched to crest pro health toothpaste and mouthwash (the green one, the blue one burned) and the soft tooth brush and it has been so much better.

Through the day I noticed my leg and foot didn't drag nearly as bad as it used to and the muscles in my leg never just stopped working. However I am certainly not walking as much as I used to, still trying to take it easy. Slow and steady wins the race I think a clearer picture will show once we compare my evaluations in PT on Friday.

Well it's almost 10:30 and I'm still awake! I certainly have much more energy today (just one short nap after blood work today) but again I'm going to be a good girl and not push myself to hard so I'm going to bed.

-Heather
xoxo-Heather

Saying Goodbye
 Pictures of Dr. Burt and the other staff members.

Saturday June 21, 2014

Home day 1

I'M HOME! Yay!
I wanted to post last night but boy was yesterday a interesting travel day, good! But interesting. So here's a recap...

My picc line was taken out (the tubing in my arm) around 12:15 in my room. This took less then a minute and did not hurt at all, which I was told it wouldn't by all the nurses and Dr Burt.  Needless to say I was skeptical, and nervous for its removal, to be honest I was really scared of this thing coming out but seriously the removal turned out to be painless, quick, and the golden ticket out of the hospital! I didn't feel a thing.

I put my face mask on and grabbed my bags to go!

Wheelchair arrived at 12:30 on the dot to bring me outside for the first time.  Now let's talk about why I used a wheelchair to leave when I have regained function from HSCT.  (I'm sure some of you are like what?? Why??)

#1 My stemmies sure didn't grow me a super hero cape, I'm a human that just went through 4 rounds of chemo therapy, 5 rounds of rATG and a stem cell transplant less then two weeks ago, I get tired (a very different feeling then MS tired, I have named it normal people tired)
#2 I have gained back movement and some strength so far, my walking has certainly improved (I do not need my cane 24-7 anymore, I haven't touched it actually since day +2) but I don't know my NEW body very well yet and I'm not much of a risk taker (some of you may find that wording interesting especially if you think HSCT is "risky", the science is there, statistically there is more of a chance of getting into a car accident then HSCT causing you harm.  Dr Burt is amazingly thorough, dedicated and truly perfectly crosses every t and dots every i, Northwestern and it's staff is top notch from the nurses, rooms, food, everything, the care is amazing.

**Future HSCT patients** please remember at this point it is so important to make sure your physical movements are of QUALITY NOT quantity.  Could I have walked outside? Yes (before HSCT no way) Could I have done it without falling into old walking habits? Absolutely NOT.  It's a amazing feeling to now be able to "push" myself just a little more when before HSCT I was conserving every bit of energy I could just to make it to mid afternoon without being down for the count.  It is very tempting and hard to resist, but don't push to hard.  Build your endurance in moderation and correctly get into physical therapy ASAP!

Wow this is going to be a long post! Were only up to discharge lol

So I was brought outside to the very nice (and sanitized for my protection) SUV O'Hare-Midway Limousine Service sent me and headed to Midway International Airport to go home. This company is very supportive and understanding of this treatment, they have offered patients a very accommodating service to make sure we travel safely. To learn more about patient arraignments myself and others have organized to make transplant easier please feel free to join our patient facebook group strictly about HSCT with Dr Burt here ***go to the files section and read the READ FIRST document when you are approved to join. www.facebook.com/groups/burthsct

***future patients*** I didn't realize how important it was going to feel to me to be in a clean car, no matter how your getting home grab the wipes from your room and wipe everything down as you travel. Bring extra masks from your room. You will be used to everyone around you keeping things super clean and sterile for the past almost 3 weeks you have been in the hospital. It's a big change to be allowed out without the space suit, gloves and mask you have to wear to just leave your room.

Arrived at Midway about 1:15 checked in, and was wheeled to my gate (Midway is huge).

3:40 flight was was delayed till 7:45 with the hour time difference from Chicago to Florida I was not excited to land at 11:15 with a 45 min drive home. Who knew if that was even going to take off on time so I switched to a earlier AirTran flight as soon as I was notified of the delay. It was now around 4.  I grabbed a bottled drink and a bag of pretzels to eat before heading over to the new gate, avoiding fast food and foods that have been probably sitting out for a little longer then my liking.

This flight is the interesting part of my trip, I pre-boarded wiped my seat down with my wipes from the hospital, sat down (still with my face mask on) and waited for others to board the plane. What happened next was completely unexpected. The second man that was set to sit in the same row as me arrived at the row looked at me and very unkindly asked "is that for my safety or yours" referring to my face mask, I replied it is to protect me from you I just had chemotherapy he replied " are you sure" He asked that I sit in the window seat away from him unless the flight attendant (who had been standing there for all of this the entire time) could find him a different isle seat, she explained to him the flight was full but she would see what she could do. It was pretty obvious this guy just really wanted a isle seat (one that reclined per his request, which mine didn't even) and picked a poor excuse to try and get his way. The flight attendant came back a few minutes later and told the man "you can have this seat sir, I found someone that would love to sit next to this young woman up front, in first class" his reply "I can go up there instead it's a far walk for her" I think everyone in at least the surrounding 5 rows jaws fell open. As I made my way to the front of the plane I heard the flight attendant tell the man to sit down. I have never encountered a human like this before, of course I have met some crappy people before but never anybody this cold! Needless to say I felt awkward and was just about in tears at this point. When I got upfront the flight attendant from the back of the plane had already caught up to me she pointed to two empty first class seats and told me I could have this row to myself away from anyone that could be sick and plenty of room to rest on the way home. She gave me a big hug apologized for how horrible the man was and asked if i wanted her to notify the captain of what happened, I said No. I wish this part of the post ended there.... We landed everyone was getting off the plane I waited in my seat until the wheelchair service arrived then here come this same guy barreling up the isle of the plane huffing and puffing fortunately the flight attendant let the pilot know what happened as soon as we landed so when he came up complaining about the flight the pilot was the one to respond telling the man had he known what happened he would have not allowed him on his plane and had him removed before take off, again I'm sitting right there! I so badly wanted to take my mask off at this point and cough on the guy so he would hopefully just run away and shut up. The pilot and the jerk exchanged not so kind words and the man scurried off finally. The entire crew apologized and helped me to my wheelchair, the pilot apologized again, I told him the honest truth... There really was nothing in this world that could truly make me sad right now, I have spent the last 17 days in the hospital stopping my MS and now I'm home to start my new life free to give my children the life they deserve, they get their mommy back. He hugged me and I was wheeled away. I went home and went to bed

By the way I had woken up at my normal 5:45 (Chicago time) it was now 11pm. I wasn't run into the ground or completely exhausted at this point. Just feeling ready for bed. HUGE CHANGE!

I will update later today with physical, endurance, changes in home life I notice later tonight.

Dr. Richard K. Burt Stem Cell Study (HSCT) Chicago

Second post 6/21
Day 1 home continued...


My first full day home was very eye opening to what HSCT has done for me. In my own home it was a lot easier to compare the differences from before transplant and now.

The major change I noticed (and is my personal favorite) fatigue, that MS fatigue that drags you down and keeps you down, it's gone.. It's really strange but super amazing to just take a quick nap and wake up refreshed. That hasn't happened in years for me.

My walking... I'm going to try to explain this in as much detail as possible because I very much don't want to give off the impression have HSCT and poof your fine. Everybody recovers differently at different paces just like MS can be very different in all of us. I happen to be one of the lucky ones that regained a lot as soon as the MonSter was stopped. (Remember HSCT is designed to STOP MS, the disability reversal is just a huge bonus!)

So when I walk I noticed I can very easily walk the same way I used to with no problem, but I can walk way more. Ex. Before walking from my car to front door was enough that I had to sit down for a few minutes when I got in the door. That's gone, I did it 4 times today with no muscle fatigue in my leg.
Here's the catch... When I tried to correct my walking to look normal I became disoriented, even with having better physical control of the muscles I need to walk I just couldn't figure out how to move the right way... I can't wait to get into physical therapy. I look very similar to a baby learning to walk when I attempt a normal gait pattern on my own.

I'm tired but it's not the same kind of tired MS throws at you. I feel like I'm recovering from chemo still. With that said I'm falling asleep writing this, I hope it makes sense when I read it in the morning.

Goodnight! -Heather
 

Friday June 20, 2014

Day +11 I'm going HOME!

 

 

 

 

My counts came up and It's safe for me to go!
I'm had my triple lumen picc line removed from my arm and I'm catching the next flight home!

I want to send a big thank you to O'Hare-Midway Limousine Service for picking me up to bring me to the airport in a sanitized and clean vehicle safe for my new immune system!
This company supports HSCT as a option of choice for MS and is more then willing to help fellow patients travel during HSCT in Chicago safely and cleanly!
Here is their Facebook page https://m.facebook.com/omlimo
For travel bookings
http://www.ohare-midway.com/

Thursday June 19, 2014

Day +10

I was up a lot last night from the bone pain in my hips but it was tolerable. Tylenol was enough to do the trick.

I woke up this morning feeling so amazing. It is still so mind blowing to be rid of Multiple Sclerosis.

All of MS symptoms either gone or showing signs of significant improvement.
Facial numbness, GONE
Hand numbness, GONE
Foot drop GONE, I can even hold resistance when flexing and pointing it now!
Right leg weakness, getting stronger!
Fatigue, GONE
Feeling terrible all day, GONE!
Muscle spasticity, GONE!

My WBC is .2
Neutrophils .2
Platelets 36
HGB 7.9

Since my HGB dropped a lot since yesterday I'm getting two blood transfusions today.

My labs will be drawn again later in the day to determine when I can go home!

Will update again later!

Wednesday June 18 5PM

Day +9
5:00

My WBC has shown a tiny bump! It is no longer less then .1 and my platelets are holding at 45!
My neutrophils are still too low to count and my hgb is 8.6.

It's the home stretch before it's safe for me to leave the hospital! Maybe just a few more days!

I will miss the city view from my room. It makes a pretty cool nightlight.
 

Wednesday June 18,  2014

Day +9
7:00am

Since yesterday's post was short and sweet I figured I would double post today, And I have good news!

The bone pain is a lot more tolerable this morning! Just mostly a discomfort now. I really tried to sleep through as much of that as possible.

The neutropenic fever that has been keeping a rise in my body temperature the last few days (any annoying me all day) is finally gone! This was causing some old sensation symptoms in my hands to act up the last few days so I was very excited to wake up this morning to find them gone!

My platelets dropped to 10 this morning so I'm having a transfusion right now. The color of the platelet transfusions makes me think of honeysuckle flowers every time.

I will update again later today!

WBC <.1
Platelets 10
HGB 9.0
Neutrophils 0.0
-Heather

Tuesday June 17,  2014

Day +8

Today started off similar to yesterday. Just hanging around waiting for my neutrophils and WBC to come up.

I didn't need a platelet or blood transfusion today at all

Today was my 4th day of neupogen injections to help bring my immune system back up and running so I can go out into the real world again!

By late afternoon I started feeling the effects of the neupogen, bone pain. Unfortunately this pain is brutal (for some it is not bad, everybody is different) but is also the sign that the bone marrow is doing what it needs to do to get those neutrophils and white blood cell counts up so I can go home.

Bone pain means I'm almost at the finish line!

The pain is intense so I'm going to try to continue to sleep through it with medication.

This will be one of my last nights in this city, soon it's time to meet the outside world again without Multiple Sclerosis and show others suffering with this horrible MonSter there is hope.

Goodnight xoxo-Heather

WBC <.1
Platelets 23
Hgb 9.5
Neutrophils too low to count

Monday June 16,  2014

Day +7

Last night we finally found a happy medium to keep the neutropenic fever (they're supposed to happen) from causing my heat sensitivity to act up old symptoms. Just a ice pack on the back of the neck, room temp down, and the night nurse checking for a rise in my temp on my skin every few hours worked perfectly!

Today I had a relaxing day, I just hung out in my room playing sudoku and chatting with friends, went on hall walks a few times, showered, there is a art lady that visits the floor once a week dropping off fun stuff for patients, she gave me a few cool crafts to do to keep busy so I've been messing around with those.

My WBC is <.1
My neutrophils are still to low to count
My hemoglobin is 9.9
Platelets 15

I'm having a platelet transfusion as I type this.

Tomorrow starts the beginning of keeping close watch of my WBC and neutrophils to jump up so I can go home soon to live my new life free of Multiple Sclerosis.

Sunday June 15,  2014

Day +6

This morning I woke up with some flu like symptoms again and my temp stayed around 99.5. I have always been heat sensitive with multiple sclerosis. In the past, 20 minutes in a house warmer then 72 degrees and I would lose vision, feeling in my face and hands, floppy foot and leg weakness into overdrive and I would feel the ton of bricks MS puts on us. Those 20 minutes of heat would leave me disabled for days if not weeks. Well this morning when that happened I simply took my blanket off, put a cool rag on my face, asked the nurse to turn down the AC in my hospital room to 70 and within a half hour I was back to normal. No Ms symptoms acting up at all everything gone again.

This was so different from anything I had ever felt! Even a pseudo exacerbation (Pseudo exacerbation is a flare up of existing symptoms caused by another medical event, such as a urinary tract infection, flu, or elevated body temperature. However, new lesions are not being formed and your MS in not really progressing attacks) would still leave me completely disabled for very long lengthens of time, days if not weeks (a true attack would put me down for months). So to make a long story short I woke up this morning like oh great I'm going to have to wait for all this to go away, I'm going to be stuck in bed all day this sucks. Well that's not what happened! I have done three laps around the halls today, went on a walk to the rec room (twice) when I became bored, did some PT, organized my room, put laundry away, showered, and last but not least painted my nails! If you remember from past posts my hands have been numb for years, it was a struggle to hold a pen to write my name let alone grip something so small... The little things in life.

I was very cautious all day not to overdue myself, I have fast learned when it comes to physically retraining yourself after HSCT the quality of your movements is much more important then the quantity EX: if I'm walking around the hall and my leg weakness kicks in or foot drop starts acting up, I stop, rest for a few moments, then continue on my path walking with the correct gait pattern to retrain my body into proper patterns. This will take time and a lot of effort!

My point of this post is this, before HSCT a day consisting of movements lasting longer then a half hour would be the extent of what I could handle for the entire day, just a few steps to the car would have me dragging my leg horribly for hours.

That is gone. The hope and reality of building endurance is real, my multiple sclerosis has been stopped. It left some damaging parting favors but it is no longer there kicking me while I'm down. My immune system has been reset to STOP attacking, giving my body time to react the proper way. #stopMS

White blood count <.1
Platelets 11
Neutrophils to low to count
Hemoglobin 8.7

I had a platelet transfusion early this morning and a blood transfusion in the afternoon to help keep my counts in a safe range. Everything is on track!

Saturday June 14,  2014

Day +5

I spiked a fever in the early morning today that made me feel really yucky for the first time since the rougher chemo days a week ago.

I'm feeling a lot better now! All the flu like, sore muscles, clammy, just yucky stuff is all gone. For those of you that have taken ReBif for multiple sclerosis it felt very similar to the reaction they describe (and I used to feel) after injections.

My white blood count is <.01
My platelet count is 24
My Red Blood count is 2.75
My HGB is 8.8
My neutrophils are still too low to count

Everything is still coming back on track for a successful transplant!

Since my red blood count was low I had a blood transfusion. I was a little nervous (since it is my very first ever) but it turned out to be exactly like the platelet transfusion done yesterday, Boring and uneventful. I have been told it's really common to go through HSCT with some form of a transfusion at some point.

Today was my second day of neupogen injections (subcutaneously) to help bring my counts up faster. Go stemmies go!

My leg weakness and foot drop has improved even more! It's so exciting to be able to lift my foot that has looked like a floppy fish for years! I can not wait to get home and start building up strength and endurance through physical therapy! I miss my PT family back home very much!

HSCT is a truly amazing option for MS patients. We deserve to be informed that this is a very creditable, researched, proven option for treatment other then another MS medication. Please sign and share my petition to help give others the option to choose

http://www.change.org/petitions/national-multiple-sclerosis-society-multiple-sclerosis-patients-want-to-know-about-hsct

Friday June 13, 2014

Day +4

Today has been a great day! My strength and energy is growing steadily. My new immune system has also hit some major milestones today too! My platelets dropped a little low so I had a transfusion this afternoon, it was fast and very uneventful...

My blood counts have hit the satisfactory numbers to reach "reset" of my immune system, half way to going home to my new life!! Yay!!!

So now I start neupogen again (this is also part of the mobilization and harvest process of HSCT in earlier weeks) This will bring my immune system back up to be able to fight infections and bring me back to an normal baseline immune system! All fresh and new.

It should take another week or so to reach the numbers we need, day by day my counts will be checked every morning just waiting for them to jump up!

Other then that I did some PT today, hung out in my room, went for a walk around the halls, met some super cool future HSCT patients, had a nice lunch and just focused on feeling well!

Will update tomorrow!! xoxo -Heather

Thursday June 12, 2014

Day +3

Today is a great day! My appetite is back without any nausea and headaches have completely gone. I just simply feel like I'm recovering from enduring chemo with no signs of multiple sclerosis. It's still so weird, MS just vanished.

Now for the very cool part.... I had lost feeling in my right leg, my foot drop was extreme. My foot just flopped around like a fish, which effected my ability to walk for over three years now. On a daily basis I was lucky if I could make it 40 steps without having to sit, hold on to something or just trip and fall. My right thigh also just didn't lift, walking even a step was never a pleasant task for me but I did what I could and got by for the last few years. Well... I have feeling in the muscles that haven't moved in years! I can now feel those muscles when I attempt to move them. It's awesome! I have a very long way to go with physical therapy to build my endurance and correct my years of walking incorrectly, but in all honesty I never even fathomed that idea, correcting my walking? I was more focused on just moving from point A to point B. Anyway correcting my foot drop and leg weakness is totally going to happen, I can feel it (seriously I literally feel it). I will post videos as I go through therapy with progress!

Now with all that said I really really want to make something clear, the science behind HSCT, the way it is designed is to STOP multiple sclerosis from attacking by ridding the body of those bad cells that never let up in this horrible auto immune disease, Regaining functions, feeling, movements from HSCT is a totally amazing bonus that a lot of people have experienced, But I do not want to seem like I'm misleading anyone in the assumption if have this treatment and poof your perfect, your MS will be gone however damage may remain (or NOT!) Please read my posts and continue to follow me to really understand what this amazing treatment can, has and will prove for the future of multiple sclerosis patients!

Here's a great article on my doctor, Dr Richard Burt #stopMS

http://www.stemcellresearchfacts.org/dr-richard-burt/

Wednesday June 11, 2014

Day +2

Last night went okay. I had some flushing which is super normal but the odd thing was even when my body became hot non of my MS symptoms came back! We kept my body temp down with ice packs and cool rags, it helped so much. No Tylenol needed!

The feeling of having that constant MS fog I have felt for years just being gone completely is so amazing. A month ago I wondered how was I going to even make it to age 30 if I didn't have enough strength at 26 to hold a glass of water without becoming a vegetable for the rest of the day.

It's just gone now...

If you have MS you will probably understand this way better then everyone else. I have always tried to explain my disease as when a NON ms'er gets sick there is that glimpse at the end of the tunnel saying this sucks but I'll feel better eventually. With MS that just doesn't exist. Everyday it gets worse, we fight we plan we take our meds we do everything we can just for that tiny little bit of energy, strength, and hope that tomorrow won't be as terrible.

I used to spend every second of everyday thinking about just lifting my foot up just a tiny bit higher with every step so I didn't fall and break my face or something worse.

When I tell you my MS is gone I truly mean it. I feel tired, I just had chemo and a lot of it! I'm rebuilding my immune system and I have a long road of recovery and healing ahead of me but I am very happy to say I will be doing that healing like a non MS'er, just like an average person waiting for that glimpse at the end of the tunnel from their common cold.

Today is a very good day so far. I have a small appetite back and my strength is building up. I'm still neutropenic my WBC is .01 I believe. I started anti fungal medications to prevent yucky stuff since my immune system is super fresh and will take them for a few months (I will update with all the discharge stuff as the time comes).

Getting ready for some physical therapy now to build up some of that new strength, will update later!

-Heather

Tuesday June 10, 2014

Day +1.

My W.B.C. (White Blood Cell)  is .04
And I am now neutropenic. ( I would explain that but it would take forever, google it, it's faster lol)
No germs for me and maintaining in a super sterile environment.

The headaches still come and go but besides that I'm just hanging around waiting for my stem cells to engraft into my bone marrow.

I was hit with my first (and expected) fever today, yuck. But the awesome team here had the Tylenol going, steroids pumping, blood cultures running within minutes and I'm feeling much better already!

Spending the day resting up letting my body put those stem cells to work, healing me up from the chemotherapy and creating my very fresh new non MS immune system.

I'm expected to be released around the 21st so we will have to wait and see when the lucky day will be. Any bets?!

 

Read about Heather's doctor Richard Burt here.
 

Monday June 9, 2014   continued...

And the moment we have all been waiting for.....

Stemmies going back in!

My new life without multiple sclerosis!

My new birthday June 9, 2014!

The transplant begins.

See the preparation here.

Monday June 9, 2014

 

 

 

 

Day 0

 

 

 

 

 

 

 

 

 

 

  

Sunday June 8, 2014

Day -1
Last night was rough, lots of broken sleep, nausea, dizziness and headaches but was also the final day of Cytoxan.

Today will be the last day of the ten hour rATG dose. Then stem cells tomorrow!

All of my MS symptoms are gone, facial numbness, hand numbness in both hands, spasticity in my legs, stiff hands, twitchy eye lids all gone. My foot drop is still there along with my right leg weakness (as expected) which will be my main focus in PT during my recovery along with reducing stress and maintaining a healthy physical lifestyle, making sure that the quality of my physical therapy triumphs over the quantity. Focusing on correcting the damage the old lesions have caused and training my self to learn new neuro pathways since HSCT has stopped the inflammatory process of my disease!

Time to rest up for my new birthday tomorrow!!!

Saturday June 7, 2014

 

 

Day -2

Today's a rough morning. Woke to some nasty headaches and feeling pretty run down and sick. Today will be the last dose of  cytoxan and rATG together this afternoon. One more dose of rATG tomorrow on its own.

Your prayers, love and support mean so muchłŹ Thank you.

2 more days till I get my stem cells back!

Friday June 6, 2014

Day -3
A bit of nausea this morning when I woke up but had Zofran and it was gone ASAP. Also took a sleeping med last night and had a great nights sleep. Day -3 is starting out great. Think we found a happy medium combating mild side effects of the chemo and rATG. Starting some physical and occupational therapy today (missing my PT family at home)

Just started day -3 of Cytoxan two hours of this then 10 hours of the rATG.
Started working on physical therapy today... Getting ready for stem cell time! June 9th will be my new birthday!
Still feeling good. Nausea is at bay, fatigue is normal all MS symptoms are gone besides foot drop and right leg weakness. Hopefully the stem cells will improve that! Wishful positive thinking.

Talk to you guys later!

Thursday June 5, 2014

It's around 2am and day -5 is almost over! My first doses of cytoxan and rATG went well with minimal discomfort, 30 minutes left. Hoping the next round of treatment goes as smoothly.
I received 1G solu medrol with treatment and it seems to have me wide awake, staring out of the window into this awesome city I hope to WALK around in one day.

This is what is coming next.
6/4 Day -5 Cytoxan & rATG
6/5 Day -4 Cytoxan & rATG
6/6 Day -3 Cytoxan & rATG
6/7 Day -2 Cytoxan & rATG
6/8 Day -1 rATG
6/9 Day -0 Stem cell transplant!

Before Cytoxan you are pre medicated with Ativan, Zofran, and Dexamethazone.
Cytoxan is given over course of two hours

Next is a 10 hour dose of rATG
You are pre medicated with Tylenol, Benadryl and solu-medrol.
Will update more in the morning.

Wednesday June 4, 2014  Afternoon update

 

 

 

Finished my first two hour dose of Cytoxan now onto a ten hour dose of rATG.

Feeling sleepy but doing well!!

Had a nice surprise visit from a HSCT veteran! Thanks for visiting Wendy!

Wednesday June 4, 2014 

 

Yesterday I had a picc line put in my arm that will stay there until it's time for me to go home. This is used instead of a IV.
This morning I admitted to start chemo, I'm just getting settled in now and will update later today!

Tuesday June 3, 2014 

 

 

 I am on my way back to Chicago for the last phase of treatment!

Sunday May 11, 2014   An overview of Stem Cell Transplant.

Saturday May 10, 2014

Over the last few days my MS has been acting up. My numbness is still gone but my walking has gone down hill and really bad. I was made very well aware this would probably happen at this point into transplant. The first dose of cytoxan (chemo) is just for mobilization but works similar to high dose steroids that also suppress the immune system. Nothing is permanent until the actual transplant when my stem cells are given back on June 2nd. I can not wait for this day!

Dr. Burt and his amazing team have been checking on me everyday. I had a T-Spine and C-Spine done tonight since the oral steroids haven't helped any with my walking over the last 2 days so now we are moving on to IV steroids! 1gram of IV Solu-Medrol steroids have been the only thing to help improve my walking during bad MS flares and I'm lucky enough to have very minimal side effects from them.

I can not wait to get back to Chicago to start the last phase of transplant!

Hair is still there but I shaved it down to 1 inch completely all around, my kids had a blast taking turns cutting mom's hair. It's not the funnest thing to clean up as it falls out even with it being cut so short but it's a lot easier then when it was so long and falling out.

I don't need a nap mid day anymore I'm pretty much back to normal aside from my walking and foot drop being a mess from the MS, The effects from chemo seem to have completely passed. I'm going to get my steroids and continue with my physical therapy for the next 3 weeks until I return for my next doses of chemo and finally my transplant!
Xoxo

Wednesday May 8, 2014

 

My hair started falling out yesterday and even more today. It was a pain in the butt to keep cleaning up so I shaved it.... It was a lot harder to go through with cutting my hair then I thought, but I'm keeping my eye on the prize and can not wait to return to Chicago in a few weeks to start the last phase of transplant. I have been very tired since I returned home. Totally need a nap mid day and a good nights sleep every night. Will keep you all updated if anything changes! Xoxo

Monday May5, 2014
A note from grandpa Larry.
Heather completed her stem cell harvest exceptionally well.  I firmly believe she will be cured of multiple sclerosis. I wont be making any more entries to this site unless something significant comes up.  She has a 3 week break now until her transplant.
Keep her in your prayers, it sure seems to be working.
Grandpa Larry Lund
Friday May 2, 2014

Stem cell harvest was completed around 5pm last night. I was so tired from no sleep the night before I slept through most of the harvest.

The removal of the catheter which is supposed to be painless was the complete opposite for me. No body including myself remembered the nerve and sensitivity issues on the right side of chest and collarbone. This was a old symptom I haven't felt in years but I guess this was strong enough to wake it up. Removal was intense for me.

Then I received a call from my nurse that they collected 23 million stem cells! (that bone pain really paid off!) They only need 2 million for transplant but I was told Dr Burt will make the final decision on how many extra I will get back. They rest will be frozen for me incase I need them for something else one day down the road.

I'm flying home tonight! I have a 3 weeks break before I return for my transplant.

I will keep you guys updated! Btw hairs still there!

Please take a moment and sign my petition to help others learn about HSCT as a option for us.
http://www.change.org/petitions/national-multiple-sclerosis-society-multiple-sclerosis-patients-want-to-know-about-hsct

Thursday May 1, 2014

Stem cell Harvest day! And the last day of neupogen! (day 6 of 6)

The horrible bone pain started to calm down around 4am, I didn't get much sleep last night but when I woke up around 6am I was just a little sore nothing too bad, the worst had come to an end! Yay!

I had my vas cath placed this morning for harvest. It looks and sounds a lot worse then it actually is (so far the chemo and catheter placement were walks in the park compared to the bone pain). It took maybe 15 minutes to have the catheter placed. It did not hurt at all, the only part that showed any discomfort or pain was the numbing medicine being injected, the needle itself wasn't so bad at all.

I just had some blood drawn from my new fancy neck accessory so they can calculate how much blood they need to collect through harvest to get enough stem cells.

I will return back after breakfast to start the harvest!

Wednesday April 30, 2014

Neupogen day 5
That bone pain thing....

Last night I had a mild headache before falling asleep, nothing out of the norm from being overtired. I woke up around 4am with a much stronger headache and pain in my hip. This pain is weird to describe, it's like a stomach cramp but in the bone not the muscle (like I said weird!) I took two Tylenol and went back to bed.

When I woke up around 9am I felt the pain that was in my hip still and also in my upper arm bones now but the headache was gone. I took two more Tylenol and I'm fine, mildly uncomfortable but fine :) (more annoying then painful) I'm staying in bed today.

Tomorrow is my last Neupogen shot and Harvest day! A vas cath will be placed in my neck and the stem cells the Neupogen helped grow will be removed through my blood.

BTW my hair is still there for now!

Wednesday night update 10:15PM

Well I finally have a symptom to report. The bone pain caused by my bone marrow producing millions of stem cells for tomorrow's harvest has spread through my entire body. Hips, chest and arms seem to be the worst. It's still a very weird but brutal pain. Tylenol wasn't doing it so they called me in a narcotic to dull the pain. Hasn't really helped much but I was told the more pain the more stem cells produced so it's a good thing!! And the pain will start to fade after the harvest is done and injections are stopped (last injection tomorrow). I hope the pain has reached it's max for the time being.

Will update you guys in the morning!

Tuesday April 29, 2014

Day 4 of 6 for Neupogen injections

Everything is still going well! My energy has increased much more since yesterday and I don't require nearly as much sleep as a few days ago. I feel back to my normal (besides the missing the facial and hand sensory issues).

I noticed my hands are dry, don't know if this is from the chemo or constant hand sanitizing but aside from that nothing else to report.

Yesterday I met with a wonderful woman who teaches a class on how to hide the effects of chemo with make up (and how to have eyebrows again!). This program is very giving and the people are very kind. If you are in the chemo stages of HSCT you can visit them at Northwestern here in Chicago or a location in your home state. Just search your zip on their webpage here. http://lookgoodfeelbetter.org/programs

A special thank you to Susie for volunteering your time to help us and bringing your services to light for HSCT patients.

Monday April 28, 2014

Day 3 of Neupogen

Still no side effects to report yet. My energy is certainly increasing. I will have blood work done today to make sure I'm on track with treatment. My sensory symptoms from my MS are still staying quiet and a friend pointed out to me on a phone call that my speech has improved (less slurring and ability to talk without hesitation between long sentences), my motor functions are still effected in my leg, foot and arm but I'm not even half way through transplant and the numbness is gone and chemo really has seemed to quiet down my MS. 4 days till stem cell harvest!!!

Sunday April 27, 2014

Day two of 6 of neupogen injections.

Everything is still going well. No side effects to report as of now and my need for excessive sleep seems to be diminishing also. I want to point out since I'm tired (and can't walk more then a city block because of my MS symptoms) I have been staying put at the hotel and constantly wipe things down with sanitizing wipes. I brush my teeth (with a soft toothbrush) at least 3 times a day and wash my hands consistently. I'm sure this may be a little over the top but I do not want to get sick, I would rather be safe then sorry and it's pretty nice to have some time to relax :)

For those that have taken Copaxone and Rebif, Neupogen has been a lot easier and more comfortable to inject for me. (I was on both for one year each)

I'll update you guys if anything changes! 5 days till stem cell harvest! Xoxo-Heather

-Heather

Saturday April 26, 2014

This morning I started Neupogen, injected subcutaneously once a day to help grow tons of stem cells to be harvested in a few days. I also started taking Cipro and Fluconazole to help protect my weakened immune system.

I'm still feeling well after chemo. I have to admit it was a lot easier then I expected. The only difference I see so far is I sleep a lot better through the night and need about a 2 hour nap mid day. My hair still hasn't fallen out yet, Other then that no other side effects to report!

I have heard the Neupogen injections can cause a good deal of pain and some side effects, so I will update nightly while I'm on them to share with you what it's like. Hopefully my positive thinking and all your love, support and prayers makes the injections just as smooth as chemo! xoxox-Heather

Neupogen can be very costly (3k-6k without insurance) If you need help with your copay or affording Neupogen for your HSCT contact Neupogen financial assistance at 8884277478 (Amgen patient financial assistance)

Friday April 25, 2014

Spent the day relaxing today. I planned on taking a trip out of the hotel today but decided to take another nap instead. Everything is going well! I have more energy today it was nice to choose to nap as opposed to need a nap. Will update tomorrow!

Thursday April 24, 2014

 

I waited to share this with everyone to make sure it wasn't just a figment of my imagination haha. I haven't been able to straighten my hand in almost 3 years. My facial numbness is gone as well as the numbness in my hands and fingers that has been a constant since the beginning of my life with MS. Chemo seems to have helped calm down this MonSter quite a bit! I start Neupogen shots in a few days to help grow my stem cells and then a week later I will have a vas cath inserted into my neck for a day to harvest my stem cells. I will update you guys in a few days once I start the next step (medications and shots). Talk to you soon!!

Wednesday April 23, 2014

I was released from the hospital yesterday around 3pm. 6 hours ahead of schedule since my veins refused to corporate. I have been resting all day I'm tired but other then that I'm good!

Tuesday April 22, 2014

First night of chemo...

  I started chemo around 8pm, it was really hot in my room on top of that the steroids probably caused this but hot flashes started, I started feeling a little off, weird feeling not bad just off so I went to bed a little before 11:00. About 15 minutes later the nurse came to wake me up to check my vitals and I noticed the vision in both my eyes was doubled and cloudy. I also had a mild headache in the front of my head and mild stomach cramps (mild enough I would not have taken Tylenol myself if at home), nausea came and went a few times. It seems like the more I move quickly or suddenly the stomach cramps and nausea come until a few minutes after I settle into a position.

 I'm writing this now at 3:00am and everything is good! Vision is back to normal (Dr Burt thinks it may be side effect of steroids, I agree), figured out how to manage the stomach cramping and nausea (no sudden movements and lay flat, relax!), hot flashes are gone, temp feels great in the room and the head ache just left on it's own.

 I'm really happy I was given the first dose of chemo late in the day, It was nice being so tired from the day to sleep through the first few hours.

  Now we just wait and see how daily activity goes! Will post again later in the day! Xoxox-Heather

At 12:52pm

 Well after several blown veins and no more places left for a IV to go Dr Burt decided to switch to the alternative route of flushing the system by drinking lots of water for the last hours of mobilization. Luckily it is working out just fine this way! I get to be released sometime today!

Monday April 21, 2014

On my way back to Chicago to start my first dose of chemo!

Saturday April 19, 2014

Start of HSCT!

I return to Chicago this week to get my treatment started! I have only been home from my pretesting appointments for less then 2 weeks but it feels a lot longer then that.
I'm going to be pretty occupied over the next few weeks any help gathering signatures for my petition while I'm focusing on my health would be greatly appreciated.

Please sign and share with your friends, family, and Facebook groups!
http://www.change.org/petitions/national-multiple-sclerosis-society-multiple-sclerosis-patients-want-to-know-about-hsct

Friday April 11, 2014

I have had so many people ask about plans for after my HSCT is completed as I begin recovery, one of the most important parts of recovery after HSCT is Physical Therapy! Many have asked where the Fox News segment was filmed also. One of the biggest blessings in my life was meeting the amazing staff at Envision Physical Therapy. They have helped me through my battles with multiple sclerosis relentlessly over the last 2 years, I could not be more blessed to have them on my side for my recovery process.

Please take a moment to like and share their page! Xoxo-Heather
http://www.change.org/petitions/national-multiple-sclerosis-society-multiple-sclerosis-patients-want-to-know-about-hsct

Tuesday April 8, 2014

Pre testing day 2...

Today was nothing like yesterday!
I had three tests done today (and no more blood draws)
Vein check (A tour of the stem cell harvesting room)
Pulmonary function testing
2D Echo Cardiogram

I also had time to meet up with a girl I met on my first trip to Chicago. Hope she will get to be in transplant at the same time as me!
Everyone here is so nice. The staff at Northwestern are amazing (especially the pulmonary function techs)

More testing tomorrow!

Monday April 7, 2014

Here we go! As I'm sitting here on the plane to Chicago I can't seem to stop picturing being physically capable of bringing my children to a playground again, holding their hands while walking without fear of falling, I could go on for a while with all the things MS has robbed me of, but let's move on to HSCT! And the process of what to expect if you are considering treatment.

My pre transplant testing consists of 11 appointments. I was able to be excused from the dental cleaning appointment at Northwestern because I just had my teeth cleaned last month and my dentist signed a form to clear me for risk of infection.

Appointments are as followed. Lab draw (blood work), EKG (heart test), Brain MRI, Cervical Spine MRI, Chest X-Ray, Pulmonary Function Test, 2D Echo Cardiogram, Vein check at the blood center, immunologist (Dr.Burt), and neurologist (Dr.Balabanov). I will update as the days and testing goes on through the week xoxox

March 30, 2014

 

 

Envision Physical Therapy  is so proud to be a part of Heather Nicole Burke's healing journey! We are so excited for you as you begin this next step.

A 26-year-old mother of two is about to embark on a medical journey that could stop her multiple sclerosis in its tracks. The disease, which attacks the central nervous system, affects more than 400,000 Americans.

March 28, 2014

Hello everyone! Thank you all for your support and love.  Please feel free to share this page with others in need of halting their autoimmune disease!

As reported on  FOX 35 News Orlando WOFL 26-year-old mother of two is about to embark on a medical journey that could stop her multiple sclerosis in its tracks. The disease, which attacks the central nervous system, affects more than 400,000 Americans.

Read more: http://bit.ly/1hguZRJ

March 27, 2014

Less then two weeks away until I start the first rounds of testing prior to HSCT! www.gofundme.com/heathernicole

Please take a moment to view and sign my petition asking the National Multiple Sclerosis Society to give attention to this disease halting treatment.

http://www.change.org/petitions/national-multiple-sclerosis-society-multiple-sclerosis-patients-want-to-know-about-hsct?share_id=SjBpyKkEtY&utm_campaign=share_button_action_box&utm_medium=facebook&utm_source=share_petition

 

On March 25th 2011

I went shopping a few hours prior to my shift at the pharmacy I had worked in for years. While at my favorite department store all of a sudden I started to trip consistently with my right leg, strange I thought? Within minutes my right arm hung at my side like dead weight, My vision then blurred out to a point that I could not focus further than a inch in front of me, My face went numb as if someone had placed a sheet of paper directly down the middle of my face cutting off feeling completely to one side. Did I just have a stroke? Iím 21 weeks pregnant! Is my baby okay? Something is very wrong. Those were some of the many things that ran trough my head within that 5 minute time span. After arriving at the emergency room with my mother and then 23 month old daughter in tow in was taken back for a MRI by a very nice man, I wish I could remember his name. We spoke a little prior to the exam and also chatted during the 45 minute long test. Now looking back on it I know why about 20 minutes into the test his demeanor changed, Why he seemed saddened. When I came out of the MRI this same man took my hand said good luck to you and your child with watery eyes. I remember thinking wow he looks tired. Within 20 minutes my entire world changed. The attending emergency room physician came in to room and those words came out. You have multiple sclerosis. Armed with a stack of papers explaining what multiple sclerosis was and a machine to pump me with steroids he seemed calm and collected as I broke down. This isnít fixable? How did this happen? Iím only 23 years old! Why me? Why? The day of March 25th 2011 is a day that constantly replays in my head. It will forever be the day I was diagnosed with multiple sclerosis.

After years of battling this horrible disease I have lost most of my ability to walk unassisted or even write my name. Caring for my two very young children is very difficult. I am raising funds to help with the overwhelming cost of seeking a treatment to stop the progression of my multiple sclerosis. I will be traveling back and forth to Northwestern Memorial Hospital in Chicago, Illinois for a bone marrow and stem cell transplant over the next few months. Donations are greatly appreciated as I face a huge expense from travel and medical expenses to help me get better. Every penny counts! Thank you for your support!

You can follow me through my transplant at www.facebook.com/heathernicolehsct

Please view my petition asking The National Multiple Sclerosis Society to please share the information about this treatment to others suffering with a autoimmune disease

http://www.change.org/petitions/national-multiple-sclerosis-society-multiple-sclerosis-patients-want-to-know-about-hsct

 

 

You are visitor number ~~ ~~ Welcome

Web page design (c) by:
Lund Consulting Service
e-mail:
consult@llund.com

Copyright 2014 by Lawrence H. Lund