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
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
Numbness in right hand
Numbness in left hand
Numbness in face
Numbness in chest
|Eye lid twitches
Hand eye coordination disturbance
Bladder retention and incontinence
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
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
Don't wait until it's too late...
Until next time! Xoxox
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
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!
Thursday January 29, 2015
7 months post.
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
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
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
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
Happy holidays everyone!
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 (
) 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
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
Or contact me directly at
MS_MOMS@yahoo.com for mailing address for checks or gift
If you know someone in need please direct them here
I will update as I have in the past during my 6 month follow up
over the next couple of days. Happy holidays!
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
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.
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
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
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
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
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
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
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:
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.
Here is a video of the function I regained in my hand...
Saturday July 12, 2014
Home day 22
Hey everyone! Sorry for the delay in update, it has been a busy week
My results from Mondays lab work came back really good!
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!!
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
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
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
PT again on Monday. I will update after!
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
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!
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!
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
I received my blood test results! My immune system is getting
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
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!
Thank you all so much for your support!
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
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!
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
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
Will post again tonight
Home day 3
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
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
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.
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
#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.
***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
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.
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
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
For travel bookings
Thursday June 19, 2014
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!
Feeling terrible all day, GONE!
Muscle spasticity, GONE!
My WBC is .2
Since my HGB dropped a lot since yesterday I'm getting two blood
My labs will be drawn again later in the day to determine when I can
Will update again later!
Wednesday June 18 5PM
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
Wednesday June 18, 2014
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
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!
Tuesday June 17, 2014
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
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.
Neutrophils too low to count
Monday June 16, 2014
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
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
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
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
Neutrophils to low to count
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
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
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
Friday June 13, 2014
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
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
Wednesday June 11, 2014
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!
Tuesday June 10, 2014
(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
9, 2014 continued...
And the moment we have all been waiting
Stemmies going back in!
My new life without multiple sclerosis!
My new birthday June 9, 2014!
The transplant begins.
See the preparation here.
Last night was rough, lots of broken sleep, nausea, dizziness and
headaches but was also the final day of
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
Time to rest up for my new birthday tomorrow!!!
Today's a rough morning. Woke to some nasty headaches and feeling
pretty run down and sick. Today will be the last dose of
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
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
hours of this then 10 hours of the
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
Talk to you guys later!
Thursday June 5, 2014
It's around 2am and day -5 is almost over! My first doses of
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
6/5 Day -4 Cytoxan
6/6 Day -3 Cytoxan
6/7 Day -2 Cytoxan
6/8 Day -1
6/9 Day -0 Stem cell transplant!
you are pre medicated with
given over course of two hours
Next is a 10 hour dose of
You are pre medicated with Tylenol, Benadryl and
Will update more in the morning.
Wednesday June 4, 2014
Finished my first two hour dose of
now onto a ten hour dose of
Feeling sleepy but doing well!!
Had a nice surprise visit from a HSCT veteran! Thanks for visiting
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
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
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
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
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
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
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.
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!
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!
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
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.
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
Saturday April 26, 2014
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
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
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
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!
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
|Monday April 21, 2014
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
|Friday April 11, 2014
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
|Tuesday April 8, 2014
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
Everyone here is so nice. The staff at Northwestern are amazing
(especially the pulmonary function techs)
More testing tomorrow!
April 7, 2014
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
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
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
then two weeks away until I start the first rounds of testing prior
Please take a moment to view and sign my petition asking the
National Multiple Sclerosis Society to give attention to this
disease halting treatment.
|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
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