HOW
IT ALL BEGAN......
July 2010
HEALTH HISTORY
Life for me is great. I’m happy, healthy and loving my
life. Work can be a little stressful at times, but nothing too bad.
Out of nowhere in July of 2010 I was writing at my desk
at work and I realized I wasn’t able to see the point of my pen on my paper. It
seemed a bit odd and so I looked up across the floor at my co-worker and I
couldn’t see half of her face! What!? Let me tell you, I went into panic mode
for a little while! This lasted about 15-20 minutes. I know my co-workers were
a bit concerned since I probably turned about 3 shades of red and started to
cry. My Dad had Macular Degeneration and that was the first thing I thought. I called my eye doctor and he squeezed me in
for an emergency exam. I called my sister to take me as I wasn’t in any shape
to drive or if I had another episode, I didn’t want to be driving. My eye
doctor did a good exam saying everything looked okay to him. I then went to my
Primary Care Physician, and we decided to not do anything more at that time but
if I were to experience another episode we would explore further avenues. As I
thought back to earlier dates I had had 3 other issues of what is called ocular
migraines at various times of my life, starting in the year 2000. I never had
headaches with them or after them, just the pretty, shiny, crescent shapes in
my peripheral vision.
In early October I started to get tingling and numbness
in the smallest 2 fingers of each hand. Then weakness in both forearms started
and I was having trouble turning things (keys, doorknobs, etc.) and writing so
I thought I would go to my chiropractor. I thought if I had my neck and upper
back adjusted, it might be relieved. This was of no help. But he tested my
strength and a few other things and didn’t believe the issue was spine-related.
He was the first to mention a neurologist.
My legs suddenly started becoming noticeably weak and
feel like they were going to buckle out from under me. I began to feel if I
wasn’t careful, I could easily fall. I called my PCP to order some blood work
to be done and we found out I was vitamin B12 and D deficient. I started Vitamin
B12 shots right away, got a Vitamin B12 sublingual to take also and vitamin D3
pills. I still was getting weaker and fatigued quickly. I then called to try to
get in to a neurologist. My PCP suggested a doctor but he had no appointments
available until mid-December and I felt I needed to see someone much sooner
than that. I was able to get an appointment with another local neurologist. He
had me do several tests over the next week. Doctor did an upper body nerve
conduction test that really surprised him and then had me come back for a lower
body test that wasn’t as bad as the upper body. He then wrote scripts for a
brain (with contrast) MRI (to see if it was M.S.), EKG, heart monitor for 24 hours,
and an ultrasound of carotid artery. Then insurance said "NO" to the
spine MRIs. Waited about week and a half to have doctor try to talk them into
it but they still determined that it was "not medically necessary".
By then I was continuing to deteriorate so bad that I could hardly function at
work or feel comfortable to drive and I was getting so weak I could do hardly
anything without help. I was getting twitches and tremors all over my body and
some intense jabs in muscles like a stabbing pain. Also, my husband noticed I
wasn’t able to recall things as easily as usual and speaking was both difficult
to come up with right words and also to speak them. I noticed a ‘mushy’ feeling
in my brain (just not clear). I scheduled an appointment for a second opinion
but couldn’t get anything until Dec 13th and still getting weaker. On Nov 30th
my fingers (index and middle) on my right hand froze and crossed several times
as did my middle and ring fingers on my left hand, the same thing. The next
morning I could hardly lift my arms to wash my hair they felt so weak and
heavy. That day at work (my last day) I could hardly do anything without just
being so exhausted. At that point I went to my PCP and that is when we thought
I better get into the hospital to get the tests I needed to figure this all
out.
I got admitted to hospital and they started poking,
prodding and keeping bodily fluids to test, examine and grow things from.
Nothing, nothing, nothing...regular doctor was going to send me home on
Saturday but neurologist wanted to try one other test, a spinal tap but I had
to wait until Monday to do it. That was done and I went home to wait. On Tuesday
I got the call that elevated levels of protein were found in my spinal fluid
and that he wanted me to see another neurologist in St Petersburg.
The local neurologist was able to get me in to see him on
Friday, Dec 10th. When we went down there I had to have another nerve
conduction test (ouch ouch) and then I saw the doctor. He told me I have CIDP.
“CIDP” I had no idea what that was.
So, doctor immediately started me on 20mg/daily of
prednisone (steroid) and requested approval for IVIg. I started the IVIg Jan
10, 2011 and get them every 3 wks. We started weaning me off the steroids in
Jan and I was off them by March 30th. Still receiving the IVIg every 3 weeks
but in July I wasn’t finding it being as beneficial as previously. By mid-July
I was about as weak as I had been in December, so my neuro put me back on
steroids again, 10mg/day. Still was extremely weak and only recovering about
half as good for only about 7 days between treatments. The middle treatment in
July of IVIg was like having nothing done at all. At this point, using a walker
due to the weakness was necessary and self-care is minimal. Not cooking or
cleaning much at all; and showering is a major challenge. When I fell in the
shower and broke a few tiles, we had to replace the shower stall area and added
hand holds and now I use a shower chair. It is still very difficult to wash
myself but I do the best I can since I really don’t want to lose that bit of
independence.
So last treatment in July we upped the prednisone to
15mg/day and see where to go from there. At about mid-treatment time right and
strength is low and stamina for anything much is poor. Heat/sun do me in, if I
have errands to run I am whipped quickly.
In
the Beginning…
Long,
long time ago
Now that I have given you the low-down of my health
history of this disease I am battling, let me go back in time and tell you more
about me and my life…
I was raised in Pennsylvania, north of Philadelphia; in a
little rural town in Bucks County called Hilltown. I have 3 siblings, 2
brothers and 1 sister; but I am the baby. Probably, an “accident” as I was 6
years behind my youngest, older sister.
Our home was not a “religious” home; I probably had a
closer relationship to the Charlie Chips can than I did with God when I was a
little girl. However, we always said grace before eating and went to church on
Sundays. I do remember one particular Sunday that I didn’t want to go to church
and put up a little fight, and my dad spanked me (the only time I remember that
happening) and told me to go get dressed for church.
When I got a little older, about 13 I’d say, we used to
go camping quite a bit in the summer time and we went to a campfire revival
meeting where when the speaker asked if anyone wanted to accept Jesus in their
hearts they were to raise their hand. With my eyes closed (all were supposed to
do this), I raised my hand and really meant it. My mom later tells me, she knew
(did she peek?) it was me that raised my hand when the man said “Hallelujah,
young lady”. Unfortunately, there was no follow up to my beginnings of this
small step of faith. My parents were not into this “born-again” thing I wanted
to try, so it kind of fell through the cracks of my life.
Later in years, when I was about 18 I got involved with a
group of kids that were going to church and one boy in particular attracted my
attention. It’s not the noblest reason to attend church but it got me there.
Unfortunately again, with this kind of attitude, one doesn’t get out of
something what one should. So, my world continued on “sowing my wild oats”.
More...
1984
and beyond
I got married when I was 28 to Scott and had a son, Jonathan,
about a year later. Jonathan was a little early coming in to the world. I had
what is called IGR (intrauterine growth retardation); they ended up taking him
at 8 months term since he would grow outside me better than inside me. My body
was stealing the nutrition from him. So, although I gained 30 pounds, he only
weighed 2 pounds, 12.5 oz.
Motherhood changes you! You wear your seat belt all the
time and listen a lot harder to everything going on around you. It's a little
less about "me", and you find this little person taking up a lot of
your time and energy. Well, I still managed to find "me time”; I had a lot
of good baby sitters! I was a pretty selfish person for quite a number of
years.
I started going to a Mom's bible study that I really
enjoyed and loved the ladies involved in it too. I think it softened me quite a
bit. I was getting into the Word of God and growing closer to Him in a way I
hadn't before. Little did I know how much it would be needed in the upcoming
years.
When Scott and I were 36 years old (our birthdays were 18
days apart, me being the elder – he never let me forget it either, haha), he
was diagnosed with Chronic Myeloid Leukemia (CML). Well, that was a shocker!
Nothing happened at first, and then about 6 months down the road they suggested
he start on Interferon shots. He did this for quite some time and it put him in
deep remission. As a matter of fact, one of the doctors at a hospital in
Philadelphia said he was "cured"!! Boy, did we celebrate that day!
Shortly after that, we moved to Florida for a job he was
offered. This was in July of 1996. Things were great; we were enjoying life and
the beach and being with friends when… wham! Blood work came back that "it
was baaaccckk!" Oh, my! I was not ready to hear that. We started looking in
to a bone marrow transplant right away as it was back as acute no longer
chronic. Scott had no family matches for donors (lots of loved ones tried) so
we looked into other possibilities. After checking with Moffitt Cancer Center
here in Tampa and Fred Hutchinson in Seattle, we went to Case Western in
Cleveland, Ohio for his BMT.
Unfortunately, he had to go through too many rounds of
chemo and radiation and I believe the radiation burned his organs so badly,
that by the time the transplant "took"; his organs had started to
shut down one by one. He passed away on November 26, 1998. During this time, I
cannot begin to tell you how much I relied on God to help me through day by
day.
SCHEDULE
2012
Ok, taking a break from the "me" story to put
in my schedule.
Sunday, March 18th - flying to Chicago. Southwest
Airlines, arriving at Midway Airport @ 10:25am. Will need to grocery shop and
unpack. Pray for lots of energy this day!
Monday, March 19th - Starting pre-testing at
Northwestern Univ Hosp. which includes Labs (blood work), EKG, CT of sinus and
a chest x-ray.
Tuesday, March 20th - receive IVIg (blood products
I have been receiving all along to keep me going until transplant) and meet
with Paula (Dr. Burt's nurse and #1 helper!)
Wednesday, March 21st - back to hospital for PFT
(pulmonary function test), Echo-cardiogram and
an appt with Dr Burt!
Thursday, March 22nd - Vein check (where they will
take stem cells from)
Friday, March 23rd - MRI of spine (with and
without contrast) Long day here!
Monday thru Friday 26 thru 30th, wait for results
of tests and more tests if needed.
Monday, April 2nd - Admit to mobilization (1 day
of chemo). My sister, Ruth Ann will be here today thru Saturday.
Tuesday, April 3rd - discharged from hospital.
Wednesday, April 4th - Thursday, April 5th - I
have to take my temperature every day. If greater than 100.4, I would have to
go to the ER and page Dr. Burt.
Friday, April 6th - Labs again (more blood draws)
Saturday, April 7th - start at 7am Neupogen (it is
used to decrease the chance of infection in people who are receiving
chemotherapy medications that may decrease the number of neutrophils [a type of
blood cell needed to fight infection]), in people undergoing bone marrow
transplants & stem cell transplants), Cipro (antibiotic) and Diflucan (is
used to treat and prevent fungal infections).
Also today, Ruth
Ann goes home, but Eddie is coming!!
Sunday, April 8th thru Wednesday April 11th - I
will be taking the above medicines each day and on Monday, April 9th I will go
in for labs again. And on Tuesday, April 10th - I will go in for my IVIg again
- should be the last one I ever have to get!!
On Thursday, April 12th - I'll be taking the meds
again today, but also going in for the harvesting of my stem cells!
On Friday, April 13th - If they didn't get enough
cells yesterday, I go back for another round of harvesting.
On Saturday, April 14th - Eddie goes home. Boy, that week went fast!
On Sunday, April 15th thru Tuesday, April 17th is
empty, so far.
On Wednesday, April 18th I go to the hospital to
have my PICC line placed.
On Thursday, April 19th I will be admitted for
upcoming transplant. This is day -7. Will receive daily chemo starting today...
Next days are numbered -6 -5 -4 -3 -2 -1
On Thursday, April 26th - Day 0!! I will receive
back my own stem cells! My new "BIRTHDAY" so to speak!
Now we count up +1 +2 +3 +4 +5 +6 +7 +8 +9 +10
On Thursday, May 3rd - my friend Carol McCormick
will be coming to help me for the next week! This is my +7 day. So she will be
there to help when I am discharged after day +10.
On Wednesday, May 9th - Carol goes home
On Saturday, May 12th -
Eddie comes back to help pack and ship home boxes and take me back home.
On Saturday, May 19th – We fly home to
Florida.
.
Continued
history
1998
After losing Scott, Jonathan and I stayed in Pennsylvania
with Scott's parents for about a month (over the Christmas season) and when the
new year came, my sister, Ruth Ann drove down to Florida with us so we wouldn't
have to enter the house alone. My good neighbors and friends had cleaned inside
and out of the house and planted flowers and just made it look fresh and clean!
What a blessing, one that made me cry, for sure. God brought so many people in
to my life to help support and carry us through this difficult time. Folks from
my church had helped send my newsletters (we didn't have the communication
through computers then) out and helped with fundraisers to cover our loss of
income and expenses still needing to be paid during the transplant time.
Jonathan and I decided to get baptized together when it
was offered at our church. That was such a special time for us. We continued to
grow and be blessed by our faith and we even went on a mission trip to
Tennessee together with the teens (my first, last and only!! LOL). As time passed, the human side of my heart was
feeling empty, so I thought it was time to get out in the dating world again.
Not something I was looking forward to. I so wanted to share my life with
someone again, I really enjoyed being married and had such a good marriage that
I was looking forward to see who God had in store for me! I went on a few
dates, some better than others, some disastrous, but a learning experience
nonetheless.
I went on a web based dating service and met this guy with
the moniker "Childguide". Now, I have to tell you I am not a
"kid person" so why this name would catch my eye is beyond me (I now
know whose idea it was). We talked for quite some time before we even shared
pictures and he found a special place in my heart. The problem was he lived in
Missouri and I'm in Florida. Again, God to the rescue! Southwest Airlines at
the time had some great rates; he flew several times down here for $49 round
trip!!! This is my now husband, Eddie. We both knew God put us together and we
couldn't be happier. Each February 16th we celebrate our wedding
anniversary, we married in 2002. He is my best friend, confidant (when I
remember to tell him everything; that is!) and truly my leaning post for what I
went through with CIDP. I was going to say he is my rock, but I must reserve
that phrase for my LORD!
Next blog will start more of my CIDP and HSCT story...
Begin
the HSCT process in Chicago
March
2012
Well, I made it here to Chicago! Right off, I would
suggest to any future HSCT participants to come an extra day earlier to settle
in and get unpacked and go grocery shopping before you have to get started in
the pre-testing days. I flew in on Sunday but sure wish I had had an extra day.
That said, HOWEVER, the day before I got here was St. Patrick's Day and it was
a GOOD thing that I didn't fly in then! Shuttle driver said there were over
500,000 people in the streets that day and the folks he tried to deliver to
their hotels had to get out of the shuttle and walk 4 blocks to their hotels
because he just couldn't drive any closer for them! So, I don't imagine my
getting here a day earlier under those circumstances would have been
beneficial!
My hotel room(s) are beautiful! It is like a small
apartment and it is very comfortable. The weather has been wonderful, almost
like it was back in Florida! The bad part is that they have not turned on the
air conditioning in the hotel yet. Sleeping was very warm on Monday night, so
last night I left the windows open which made it better. I do use ear plugs so
it's not too noisy because in the city, it's never really quiet. When an
ambulance or fire truck went by one time, my word; was that ever loud!
Fortunately, it wasn't during the night.
Bright and early Monday morning (8:15am, not so early as to me it was like 9:15am Florida
time and I had been up since 5am anyway) my room phone rang and it was Andy
Price, who is here from Australia who is also having a stem cell transplant.
He's been here a while and is further along the process than I am. He called to
see if I wanted to walk over to the hospital with him and he'd show me the
ropes! What a blessing that was, since I wasn't really sure how to get there by
foot! So we walked over together and when we got in to the hospital, went our
separate ways.
So, this was my first full day of testing. First up was
the lab work, I was a little surprised they only took 14 vials of blood. Maybe
because they took 22 when I was here for the evaluation, they didn't need as
many this time. I wasn't sure if I needed to fast for the draw so I didn't eat
anything; but just so you know if you are a future HSCT hopeful, you do NOT
need to fast for these draws. So, I stopped at X-ray before desiring to get to
the cafeteria for "brunch" so I could drop off the X-rays I had
brought with me from a previous one I had done in Florida. Well, the gal helped
me to go get my X-ray done right then and booked me in to see if they could fit
me in for the sinus scan so I wouldn't have to come back later that same day.
They give you a buzzer like you get when you go to a restaurant and off I went
to the cafeteria. I just sat down with my chicken leg, mashed potatoes and
veggie when of course, the buzzer went off! I thought to myself "I am not
going now! I am going to eat first!" and I did. It went off 2 more times
before I got back up there. They took me right in as soon as I walked in the
door and got it right done! They are great! After that I just had to go get an
EKG and I was done for the day and it was only noon!
I was pretty tired from that so I sat for a bit and read
my nook. I called Andy to let him know I
was done because we had talked about going to see Bob Boen, another HSCT
patient who was in the hospital getting his first batch of chemo for the stem
cell collection. Bob is between Andy and me in the process. It turned out that
Andy left his phone at the hotel, so he never got my call. I just was resting
and waiting in the Prentice Hospital and went to get a cup of coffee and Andy
showed up and we sat to drink our beverages until we finished then went to see
Bob and his wife Diane. We had a great visit together and had quite a few
laughs. I left about 3pm and walked back to the hotel, and laid down for a
little nap.
We had a few phone calls in regards to our debit cards and
credit cards; so as a reminder when you travel out of your norm, don't forget
to let your financial institutions know or call the number on the back of your
card to tell them so you don't have to fix it after!
Tuesday was a bit of a headache day, literally. I met
with Paula; she is Dr. Burt's nurse who is THE BEST to ask any questions you
have. We met for about 45 minutes to go over the whole process I'll be going
through and answer any questions I might have. (This was not the headache part,
by the way.) Then I had an appointment at 12:30 for my IVIg (this is the
medicine I get every 3 weeks to keep me going). Since this was their first time
giving it to me, and the certain kind of
IVIg I get, they run it in a lot slower than I'm used to and there is a lot of
it to give, so we actually got started too late in the day for me to get it all
in one shot. I ended up being there until 6:30pm and I am back again now on
Wednesday morning at 8:30am to get the 2nd 1/2. Gotta just go with the flow and
handle these little things that pop up unexpectedly. After I finish this infusion, I will have my
Pulmonary Function Test, which takes about an hour and then I have a 2D Full
Doppler Echo after that. When I am done these tests I will meet with Doctor
Burt to hear him tell me about what he is going to be doing to me for the
transplant and answer any questions I have as well. If anything unusual comes
up, I will be sure to let you know...
How
God worked things for me
Faith
background
Romans 8:28
And we know that in
all things God works for the good of those who love him, who have been called
according to his purpose.
I believe my purpose in all the things that have happened
in my life were to bring glory to God. From Jonathan being born early and being
so little (2lb 12.5oz) to Scott's battle with cancer, taking care of my parents
(my dad was legally blind and my mom had Alzheimer's), Eddie’s heart issue that
ended up needing 2 stents because 2 of his main arteries to his heart were 95%
blocked to this most recent occurrence of CIDP. But these are just the tough
things; there are so many more good things that have happened in my life. My
relationship with my parents was wonderful; with my siblings have grown
stronger as we have gotten older; both marriages I count as blessings; and
being a mother is the most interesting! But, my relationship with my Savior has
grown leaps and bounds since I turned about 40 and that is something I will
cherish forever.
My choice is to acknowledge Him in all that happens to
me, and offer Him praise through the good and bad. This, to me, is what is
called faith. We don't know why things happen the way they do, and we may never
know and I don't have a problem with that.
When I was diagnosed with CIDP the doctor that helped me
regain my abilities to function best told me that I would probably be on IVIg
(Intravenous Immunoglobulin-certain blood products from about 1000 people) and
steroids for a time; then wean off the steroids and stick with the IVIg and
eventually lengthen the time between IVIg infusions. After a year, I was still
getting the IVIg every 3 weeks and still on steroids. I tried to go off the
steroids at one point but that set me back almost to the point of how bad I was
at the very beginning. This made me wonder if the IVIg was doing much at all.
But, you can tell the difference when time goes by that it is time for it
again. I just don't seem to be able to do one without the other.
During the first few months after I was diagnosed, Eddie
did a lot of research on the internet about CIDP and found a web site called
GBS/CIDP Foundation International. I got on it and went to the forum to talk to
others that had this same disease. The Lord led me to a gal named Alice who had
a (hematopioetic) stem cell transplant (HSCT). Now, as I mentioned earlier, my
first husband had a bone marrow transplant that didn't turn out too well. I
watched him suffer so long and hard through that battle, but the thing I
remember most is saying to myself "If anything ever happens to me that I
need this kind of treatment, I will NEVER do that!” From the time I read about
Alice and read her account of the stem cell transplant (you can see it at http://www.alicedicroce.com ) it was as
if God said to me “open your eyes and heart to this Wendy, this is for you”. I
sat on this information for a while and chewed on it. I kept it in the back of
my mind as an option. I was so frustrated in feeling better, then worse;
fatigued then a bit of energy; dizzy or not; shaky, weak, tingles, more weak. I
thought "I do not want to do this the rest of my life!" A pivotal
moment for me was one day while receiving my IVIg, an older woman was there to
get hers for the same condition, she was diagnosed at about the same age I was.
She sat there in her wheel chair unable to do almost anything for herself. That
day she said to the nurse that she was so pleased with the results from her
last treatment that she could hold her cell phone and put on her own lipstick.
I looked at my sister who was with me for this treatment and mouthed “I don’t
want to end up like that”. The more I kept thinking about the HSCT and reading
about it, the more I realized this is something I was truly interested in. I
spoke to Eddie about it occasionally and had him read a thing or two and pretty
soon he was finding out more information on it than I was! We were praying
about it and it was time to put those thoughts into action. I got the paperwork
from Northwestern University Hospital and filled out all the information to
send it back to them. I heard back shortly that they were interested in seeing
me and there was nothing that would hold me back from the evaluation process
and we booked a trip for me to go to Chicago!
A week before I was to go, I got the wonderful blessing
of getting to meet Alice and her partner Sophie! We went to lunch together and
I got to pick their brains. I was so excited I could hardly eat (if you know
me, you know that is highly unusual!) Alice, of course, having gone through the
HSCT and Sophie had so much to add as her caregiver! After I was accepted in
the program, we got together again for dinner and chatted about it all some
more...(I finished my meal this time!)
Alice,
me and Sophie at our first meeting
Evaluation
Time
November/December
2011
While in Chicago for the evaluation, I stayed with my
brother John and his lovely wife Janet. John carted me back and forth from
their home over an hour away for the two days of my appointments and patiently
sat in the waiting rooms for me to meet doctors and test throughout the days.
Then, we would go out to eat or he cooked delicious food for me (he used to be
a chef and he still cooks great! Filet Mignon for one meal-I know, I'm a lucky
girl!). His two kids and their kids live in the area, so we got some much-needed
family time in as I stayed for some extra days in order to enjoy them!
My brother John and his wife Janet
The evaluation process itself is not too big of a deal.
The first thing I have to get is the EMG/NCV test. For those of you who have
never experienced this just think about getting tasered at your funny bone!
Yeah, it’s pretty intense at times. Not all of it is horrible but it’s pretty
uncomfortable. They put electrode receptors on you and then use a two pronged “shocker”
device in another area and measure the distance and time it takes your nerves
to respond to the shock. This is done on one’s arms, hands, legs and feet. The
process takes quite a while, usually over an hour. This is usually done by a
“fellow” and the neurologist (Dr. Allen, in my case) pops in once in a while.
Sometimes, he takes over if the fellow is having any difficulties or if he just
wants to look at something specific. The other part of this test is the Nerve Conduction
Test uses a skinny needle put in to different parts of your muscles and then a
reading is taken on your reaction when flexing those muscles. The doctor must
do this portion of the test.
When this is over, it was down to Laboratory Services to
have A LOT of blood drawn. Well, for me it meant 22 vials of it. Wow. I was
hoping that they could get that many since I flew up yesterday and I just don’t
get to drink as much water while traveling as I do at home. It went well and
all came out just fine.
We had some time to kill before my 4:00pm appointment
with Dr. Burt, but I didn’t have a lot of energy to do much of anything. John
went out and about just to get out of the hospital and I waited for my
appointment and just rested. When I got called in for my appointment, I was
extensively interviewed by another fellow first. What I had done to assist
myself prior to the trip was to type out a page or two of my story and I carry
with me a calendar of my doctor visits, IVIg treatments, medicine list and
changes, etc. This really makes a difference in communicating due to the fact
that neurological diseases such as mine and many others cause mental cognizance
issues. I found it very difficult at times to come up with the right word at
the right time especially when anxious or excited. Having this log of events
all written out for them and me was very helpful. I was so excited to meet Dr.
Burt and express my thankfulness to him for what he has done for others and for
considering me for this process! He was and continued to be rather humble at
any praise almost to the point of nonchalance. But, if you watch him speak on
You Tube videos to his peers, you can see his excitement and know he is
thrilled to have helped so many people. (Go to You Tube and type in his name,
Richard K. Burt to see his many talks about the HSCT for auto-immune diseases.)
After my accolades to him, we got down
to business. A lot more questions and me fumbling through my calendar and
notes, for him to say “do you realize this can kill you?” “Yes”, I say
seriously, “I am ready to take that chance.” I truly believe that God set this
whole process in motion so who am I to argue? Whatever the outcome, I could not
lose! To live through the battle, I get to praise Jesus or if I die, I get to
be with my Lord! It is always hardest on the ones still living if one is to
die, but I knew my family understood how I felt and they knew the Lord would
take care of them too. I mostly felt that since God is with me and sending me
to this, He would see me through it to be able to share this story of the
process and HIM!!
I felt when this appointment was over; I really hadn’t
been able to tell Dr. Burt all I wanted to say. When I got back to my brother’s
house I typed up and sent an e mail to Dr. Burt getting everything out I wanted
to express but was unable at the time. I just made a personal plea about how I
wanted my life back.
Thursday was a down day; the only thing I had to do was
collect my urine for 24 hours. My brother’s wife, Janet, had arranged a special
time for me at the spa in their town and I went and had a manicure. She also
set up for a pedicure but I could not stand to have my feet manipulated as they
do for that, so just a manicure for me was great! When your nerves are affected
by this kind of disease, the last thing you need is stimulation. The thought
was wonderful and I am thankful to her for loving me enough to spoil me this
way!
On Friday, I have an appointment with Dr. Allen at
1:00pm. John and I go out for breakfast on our way down at a great diner, I
miss them. We don’t have diners, per se, in Florida like there are up north.
Anyway, when my time comes to sit with Dr. Allen, we go over my calendar and
story as well. A lot more questions and answers but he tells me he is not very
impressed with my disease! Well, then he can have it! This puts a little damper
on things, but the final say is up to Dr. Burt and I will just wait and see.
I had a great rest of the week end with my family and
enjoyed every minute of my time with them, nephew, niece, their spouses and
many, many great nieces and nephews; their extended families and lots of good
food and fellowship. And, of course, football on the television.
How
these 2 weeks have gone...
March
2012
Well, I've been here two weeks now and have gone through
all the tests, so I will catch you up on everything...fasten your seat belts!
Last I left you I was going to have a 2D Full Doppler
Echo and the Pulmonary Function Test. They went on fine, pulmonary test
especially good; I figured due to 22 years of teaching aerobics, even though I
often get winded and out of breath easily now. Short spurts-I'm fine, but no
long distance stuff for now.
When I went to see Dr. Burt and Paula, they let me know a
few things showed up from other tests that need further investigation. In my
blood work it showed high counts for Hepatitis B and also a CEA number was a
tad elevated. So, back for another few vials of blood. The CEA count is a
cancer marker, the range is from ?-3.0 and my number was 3.2. Well, they MUST
check these things out. So, I had to have a scan for the abdomen and pelvic
area, with contrast. It's a very quick procedure but it requires an IV! Oh
goodie, another stick!! Also, I needed to drink a barium beverage, yummy! Not
so bad, really. Banana flavor, kinda (just kinda) like a milkshake. Results are
that I have 2 small cysts on my left ovary. They were not trouble of any kind,
but they have to make sure it wasn't more than cysts; it's good that they are
so thorough! When I got home, I had to rush to the bathroom and couldn't
imagine why I was now having THIS trouble (I hadn't eaten for well over 12
hours). After a few rounds in there, I called the nurse and asked if this was
normal, and discovered that some folks have this happen from the barium! I sure
wish they would have told me ahead of time!
As far as the Hepatitis B is concerned, the blood work
came back negative for that also. What happens to cause that is from the IVIg
that I get to keep the CIDP symptoms at bay. As I have stated before IVIg is
blood products from about 1000 other people that go through a cleansing process
to remove any problems like Hepatitis, so the process kills any Hepatitis virus
but the antibodies are still present in the blood which goes in to me.
Therefore, the antibodies were showing up in my blood, but the results from the
blood test was negative for the virus being present; so, no worries there
either! Praise God!
While this was all going on, off and on for about 3
weeks, I have been having a little achy tooth trouble from a crown I had done
in February. There is a dental office here that is used for folks going through
the HSCT if we haven't been signed off by our own dentists. I was signed off
from my dentist in Florida, but this ache just wasn't leaving me. I made an
appointment to see the dentist here to have it checked out. I would be really
upset if going through the HSCT and then having an infection in a tooth would
be my demise! I only had to have it shaved down a bit and it feels fantastic
now!
This is exactly why they schedule the way they do with
the first week full of tests and the second week empty. They ALWAYS seem to
find some sort of something that needs to be checked out further. So, if you
are coming to Chicago for an HSCT, don't count on the second week to be a
freebie! It'll probably be more intense than the first since you know what's
coming the first week, but the second week can throw you for a loop!
Now, I am set to rock and roll and get started on the REAL
process. I go in Monday morning to get my first round of chemo. This is an
overnight stay in the hospital and my sister will be arriving that day to stay
until Saturday! My brother, John and his wife, Janet will be in town and will
probably stop in to see us also! A mini family reunion! That will be great.
Yesterday was my first "no appointments" day,
other than Saturday and Sunday. I was able to hook up with Andrew Price (a
little further ahead of me in the HSCT process) and we went over to the medical
center to see Bob Boen (also further ahead of me but behind Andy). Bob was
getting his stem cells harvested. They use the same machine that is used when
doing a plasma paresis (blood exchange). We had a great visit and I got to see
the process in action! Bob's wife, Diane was there too, so I got a little
"girl talk" in while the boys were chatting about machines or some
such...ha ha ha.
Bob was kind enough to get the four of us that are here
at the same time, sweat shirts to honor our history making procedure! Take a
look at these neat shirts:
The "30" represents that I am the 30th patient of
CIDP to have SCT!
The
city-scape of Chicago with the name of the hospital and my title
"Windy City Wendy
Comes to Chicago" & my new birthday
So
many blessings...(acceptance & insurance)
December
2011
When I got back home from the evaluation process I
figured it was wait time! Well, God had other plans! He just paved the rest of
the way in short order, let me tell you! I got back from Chicago on Monday, December
5th and on Tuesday, December 6th Paula called to tell me I was IN! By the way,
in 2010 when I was diagnosed it was 2 days after my 55th birthday then I hear I
am accepted into the HSCT program 2 days before my birthday! I believe that in
2012 ON my birthday, I will hear I beat CIDP!!
Now, we have United Healthcare for insurance and right in
their paperwork we all get a copy of it states that they do pay for stem cell
transplants for people as long as it isn't in "trial". Which, of
course, the HSCT I am doing is a trial; so I anticipate a battle! Paula (Dr.
Burt's nurse), is the one who sends off the insurance requests and she put in
for mine Dec 7th or 8th and I figured a few weeks before I will hear
anything. I decided to call her on Dec
22nd just to see IF something came through yet. I left a message on her machine
and she called me back to tell me "I have an early Christmas present for
you!” Wow! I was so surprised to hear she had an answer already let alone a positive
one!! Thank You Jesus!!
I spoke to Paula again the following week to set my date! I probably could have gone up for the
transplant a lot sooner but my sister wanted to go up to be with me and she had
spring break at a certain time and we counted back from there for my start date
in March.
Now, the next thing we were concerned about was the hotel
and air fare costs. I got on the phone with my insurance representative on
Thursday, January 5th about whether or not they have a program of this type. He
didn't know, but said he would check with another lady there and get back to
me. Friday, the very next day, I walked out for the mail and in the mail box
was a letter to me stating that there is a rider with the insurance company
will cover the travel and lodging! I lifted my eyes heavenward and just said
"Thank you, thank you, thank you Lord!"
The
3rd week in Chicago
April
2012
Chemo mobilization starts today (Monday, April 2nd)!
Bright and early, after not sleeping too well (excited to get started) I walked
to the hospital and was admitted to my room by 8:00am! IV put in, blood taken
out for labs, fluids started and Mesna to protect the bladder and kidneys from
the chemo started. Then my sister arrived! So nice to see a familiar face!
Every one of the nurses and staff are wonderful but they can't take the place
of family! Lasix started too, so up and into the bathroom quite often. Then, I
got another pleasant surprise! My brother John and his wife Janet came in! They
and my sister probably haven't seen each other for I guess about 8 years so
that was a great visit! They went out to dinner together and brought me back
dessert from The Cheesecake Factory! Yumm-o!
When I went to sleep, they come to check your vitals in
the middle of the night, of course. My blood pressure was only 80/44; just a
tad low wouldn't you say? So they increased my fluid intake and decreased the Lasix.
It came up okay through to the morning. Well, I happened to mention to Amy
(another one of Dr. Burt's great nurses) that when I receive a lot of fluids,
even with my IVIg infusions, I get a "heavy" feeling in my chest and
upper back. I was feeling this way at this time because there were A LOT of
fluids going in. She told Dr. Burt about this and guess what?! I have to have a
chemically induced stress test. Sigh! We go back to the apartment for the night
and I wake up at 2:00am to go to the bathroom. I am so dizzy I can hardly stay
upright! I try sitting up for a while and thankfully Ruth Ann woke up to give
me moral support. I finally did fall back to sleep and woke about 6:30am still
dizzy. I called Amy and she told me to take a Zofran which is for nausea but it
might help. By that time I had talked to Eddie too, and he posted on facebook
for prayer for me. Finally, by about 10:30am my dizziness subsided.
I had an appointment with the cardiologist at 12:45 where
I just answered questions and they (he and a fellow) listened to my lungs and
heart. They also looked at my previous EKG and Doppler scan, which looked just
fine. However, I still had to have the stress test at 3:45pm. I couldn't eat
anything for 5 hours before the test so Ruth Ann and I just hung out at the
hospital (she had ice cream!) since there was no use going out to do anything.
We like to people watch and chat and share about the Lord with folks, so we
were well entertained.
I got in about 4:00pm for the start of the test, another
IV! Oh, joy! Lay down on the bed while some stuff is going in my veins to
increase my heart rate, squeeze a rubber ball and move my legs as I can to
raise my heart rate. Then another person is taking pictures of my heart while
this is going on. I guess it wasn't going up fast enough, so the tech put in
another medication to give me a boost which apparently really worked, because I
went into tachycardia! She immediately stopped the test but the other tech was
able to keep taking pictures while I was having this reaction; it lasted for
over a minute! Whew, glad that was
over, it is the weirdest feeling and very uncomfortable. I got calmed down and
my heart rate lowered but then got the shivers and they covered me with warm
blankets; that felt better. It was now about 5:30pm and I was ready to get out
of there and get some food!
Ruth Ann and I went to The Elephant and Castle for dinner
and had the Shepard's Pie, tasted soooooo good.
Elephant and Castle Pub
Thursday lasted about 3 days, I think. It just went on
and on...I had to go back to the hospital for labs again, but this time it was
a fasting lab since they wanted to check my cholesterol and triglycerides. Ruth
Ann and I were going to go do a little shopping at a thrift store we found on
the internet that was nearby, but I got about 2 blocks away from the hospital
and knew I just couldn't do it! So we turned and walked back to the hotel for a
nap and then some lunch. Ruth Ann was
having some blood pressure issues of her own for a little while and she was
dizzy too (we like to do things together!). After lunch, we did walk to a GNC
for some fish oil tablets for her and they seemed to help, thankfully! In the
meantime, Paula called with my lab results; cholesterol and triglycerides were
not as bad as I thought they might be! Dr. Burt looked at the results of the
stress test but wanted to confer with the cardiologist before deciding what to
say and the cardiologist needed to look at the results himself before talking
to Dr. Burt. I didn't hear anything by end of day Thursday one way or
another. We had another nap after that
walk and then some dinner. No wonder that day seemed so long...
Friday came and went with no news from Dr. Burt's office,
so we are going forward with the "no news is good news" motto! (With
Paula's blessing.) Today, we went for a walk to get some groceries for the
apartment for when Eddie comes. Let me show you how cold it was!
Ruth
Ann coming back from the store! Yep, that cold!
Saturday I started the Neupogen shots, which will
increase my blood growth in the marrow for the harvest this coming Thursday.
Also, two antibiotics started at this time. Ruth Ann leaves today and Eddie
comes today! They got to be with me at the same time for about a half an hour.
My
two besties, Eddie and Ruth Ann
4th
week’s ups and downs
April
2012
Oh yes, this was a busy week! Results came to me from
Paula on Monday from the cardiologist (Dr. Shah) and Dr. Burt. Dr. Shah did not
like the looks of my stress test in the fact that the tachycardia lasted for 1
minute 11 seconds after they stopped the test. So that means I have to have a
cardiac catheterization. Don't know when that is going to happen at this point.
Bummer! The thing is, though, if there is something wrong with my heart and I
need a stent; this is the best time to find out and fix it. If I was to go
through the Cytoxan (chemo) and it overstresses my heart, it could really be
bad. Better to be safe than sorry. As I have said before, they are nothing but
thorough!
On Tuesday, we went to the blood center for my IVIg. I
get to sit in a recliner for 5 hours for this and it is only a half dose. I am
to come back the next day for my 2nd half. When I get done this and we get back
to the apartment, I feel a bit warm and take my temperature. It is at 99.0. Now
that might not sound too high but my normal temperature runs low; about 95-97
degrees. I'm thinking I'm getting a fever. When it hits 99.5 I call Paula. So,
Paula and Dr. Burt call me back and say if it goes over 100 to go to the ER.
Okay, okay I will. Tried the ice cubes on my head, window open by cool air and
a tepid bath. No good, 100.5 and we head to the hospital at about 6pm. Well,
let me tell you when you are neutropenic and you go to the ER, you get quick
action! Sat for about 2 minutes and was called to be taken out of there. I got
a lot of dirty looks from an almost full ER waiting room. Got to a safe, private,
"clean" room and got an IV put in (by the way, if this happens to any
of you following me; ask the nurse if she can put it in a vein that is not in
the crook of your prominent arm). They pulled blood and my white blood count
was 1.2, normal is over 10. My fever was 101 degrees. So I had to be admitted.
Back up to the Prentice 16th floor! Only it took until 6am to get me there! At
least Eddie knew at 1pm that I was being admitted and he could go home. I was
given anti biotic after anti biotic, Tylenol, and any other meds I was supposed
to take and some more for good measure, I'm sure! All monitored very closely
and not without permission! So now it is Wednesday morning and Dr. Burt &
Amy come by to see how I'm doing. I remind them I need my second batch of IVIg
and Amy orders it for me about 10:30am. The rest of the day consists of
waiting, being given more antibiotics, oh yeah and Nuepogen! 3:30pm still no
IVIg, called nurse and she's been on the phone with pharmacy several times to
see where it is also. They keep saying it's taking a long time mixing...4:30
still no IVIg; I call Paula, she usually is the go-to gal but she doesn't have
pull with the pharmacy folks! In the meantime, I can feel my temperature
starting to go up again and sure enough I'm back to 99.1, keep those antibiotics
flowing. At 5:30 still no IVIg, nurse says they will bring it up as soon as it
is done; they promise by 7pm! "7pm!" I say! Well, it finally got
there about 6:45pm and she gave me the pre-meds of Tylenol and Benadryl and says
she'll be back in half an hour to start it. I said, ah no, just start it now,
at home I don't ever take the pre-meds and I don't have any trouble so just get
it going!! The bottle they bring is smaller than the one they brought me when I
got it the day before and it had a few more grams of IVIg in it than it was
supposed to (42 instead of 39) but we ran it anyway and it was done in about 2
1/2 hours instead of 5. This is more like I was used to when i get it in
Florida. Their laws here are different and they mix it with more solution (at
least they did the other days I had it). So I wasn't going to complain about
it!
When it was finished, I put in my earplugs and put on my
eye mask (an absolute MUST for those of you behind me) and slept mostly through
the night. I still had to wake for blood draws and vitals from time to time.
Thursday morning woke for another Neupogen shot, and then
went off to get the lovely temporary port in the neck for my harvest. Oh, that
was enjoyable - ah, not so much. But not painful, just very uncomfortable! Then
back to the room; it was all done in about 2 hours. Dr. Burt & Amy stopped
by and they discharged me to go get my cells harvested. I got rolled over to
the Feinberg Blood center and was hooked up in no time. 4 hours later, 20.8
million stem cells were collected!!!! (One only needs 2 million for
transplant.) The removal of the port was much better than getting it put in.
Getting
my stem cells harvested. Similar to a dialysis machine.
Neck
catheter from harvest collection
When I came home (apt) I wasn't even hungry, just ate 1/2
bowl of soup and went to bed and slept 14 hours! Friday was just kind of a
restful, quiet day and Eddie and I ordered dinner from a company that delivers
from all over the city called "Grub Hub" (mark this in your bookmarks
if you are coming up for treatment). I got prime rib! It was delicious and I
have a least enough left over for 2 more meals.
Today, Saturday, Eddie left (sad face) but I am feeling
much better! My brother and his wife may come for a visit tomorrow.
When I go for the heart catheterization on Monday, this
is what might happen. If they find nothing wrong, they pull the instrument out
and we go forth as scheduled! If they should find a blockage, they will put in
a stent and the HSCT treatment will be postponed for 30 days. I will have to
pack up all my stuff and fly home and come back to restart where we left off.
Of course, I hope there is nothing to find so I don't have the hassle of the
packing, etc. but if it is God's will that this is how a problem in my heart is
to be found, then it is all for the best!
Caring
to share...
Faith
story
One of my favorite readings in the bible is from Psalm
121, especially when I read it in first person. Let me share...
Psalm 121
1 I look up to the
mountains—
does my help come from there?
2 My help comes
from the Lord,
who made heaven and earth!
3 He will not let
me stumble;
the one who watches over me will not
slumber.
4 Indeed, he who
watches over Israel
never slumbers or sleeps.
5 The Lord himself
watches over me!
The Lord stands beside me as my protective
shade.
6 The sun will not
harm me by day,
nor the moon at night.
7 The Lord keeps me
from all harm
and watches over my life.
8 The Lord keeps
watch over me as I come and go,
both now and forever. (NIV)
http://www.biblegateway.com/passage
Holy Bible, New
International Version®, NIV® Copyright © 1973, 1978, 1984, 2011 by Biblica,
Inc.® Used by permission. All rights reserved worldwide.
In the first verse where it says "I look up to the
mountains--", as people; I think, often we look to the things we consider
"big" in our world, could be the government, priest, pastor, mate or
money! But those are not the things that will give us the answers that we
really need! Our answers come from Christ alone. He is the one who took our
sins to the cross and there died with them upon Him; He took the sins of the
whole world when He hung on that cross! Whether we believe in Him or not, that
is what He came here for. He came to take away our sins; past, present and
future so that we may have a right relationship with the LORD. It is the LORD
(God in heaven) who used Jesus to speak to those while He was on earth and to
teach us the way to Him. Also, He ordained the written word for us to be able
to get and stay connected to Him on a regular basis.
Galatians 1:11 But I make known to you,
brethren, that the gospel which was preached by me is not according to man. 12
For I neither received it from man, nor was I taught it, but it came through
the revelation of Jesus Christ. (NKJV)
If you don't know Christ as your gateway to the LORD, I
encourage you to read the book of John in the New Testament and also the book
of Romans. Romans 3:19 - 6 (all) is especially helpful. Most of you have
probably heard the term "born again", but it is not just a name we
made up; it is a command from the Lord in John 3:
John 3 (NKJV)
The New Birth
3 There was a man
of the Pharisees named Nicodemus, a ruler of the Jews. 2 This man came to Jesus
by night and said to Him, “Rabbi, we know that You are a teacher come from God;
for no one can do these signs that You do unless God is with him.”
3 Jesus answered
and said to him, “Most assuredly, I say to you, unless one is born again, he
cannot see the kingdom of God.”
4 Nicodemus said to
Him, “How can a man be born when he is old? Can he enter a second time into his
mother’s womb and be born?”
5 Jesus answered,
“Most assuredly, I say to you, unless one is born of water and the Spirit, he
cannot enter the kingdom of God. 6 That which is born of the flesh is flesh,
and that which is born of the Spirit is spirit. 7 Do not marvel that I said to
you, ‘You must be born again.’ 8 The wind blows where it wishes, and you hear
the sound of it, but cannot tell where it comes from and where it goes. So is
everyone who is born of the Spirit.”
It's so easy when you open your mind and your heart to
this possibility that this is the truth! If you read and are open to this, ask
Jesus to forgive you and request Him to become the leader of your heart and
life. Self-change prior to this is not necessary. Then find a good bible
believing and teaching church to fellowship in.
Two of my spiritual mentors for many years have been my
sister, Ruth Ann and my very good friend, Shelley. They both have shown me
love, care and how to live a good Christian life. My sister is the tougher of
the two, she's the one that tells me that I am not doing something that I
should be and risks the chance of hurting our relationship in order to help me
see what needs to be changed in my life. She is not perfect, though; and it's
okay, I've turned those tables a time or two! (chuckle) But it's for our
betterment and we know that. We've been through a lot of ups and downs and it's
made our relationship stronger. We are not just sisters by blood but through
our faith have become even closer.
Then there is my friend Shelley, who's shown me always
grace and love plus caring, giving and such a generous heart. There was a time,
after Scott died, that Jonathan and I went to see her. He husband was away at a
business meeting and she gave up her master bedroom suite for me! I was just
luxuriated in this cocoon of comfort and tranquility and peace that just
overwhelmed me. Her generosity is boundless and it is through her love of
Christ that enables her to be as generous and loving as she is. She is having
her own health issues for longer than I have been dealing with CIDP, so we pray
a lot for one another and no matter how our health situations turn out we know
we will meet again in heaven and will continue our friendship there.
My husband, Eddie, is another gentle soul who inspires me
to be a better person. His strength and beliefs are built on the solid rock of
Christ. He is just as he should be for me and treats others and myself with
respect and love that shows the Jesus in him. He's not perfect either, as none
of us are. I pray that my son, Jonathan, has seen enough of a good example
while living at our home in the past and having had his earlier years filled
with God's word; that he becomes the man God has intended.
To those who may know the Lord, but have perhaps
backslid; please let me share this with you from The Message:
Hebrews 4
1-3For as long, then, as that promise of
resting in him pulls us on to God's goal for us, we
need to be careful that we're not disqualified. We received the same promises as those people in the wilderness, but
the promises didn't do them a bit of good because they
didn't receive the promises with faith. If we believe, though, we'll experience that
state of resting. But not if we don't have faith. Remember that God said,
Exasperated, I vowed,
"They'll never get where they're
going, never be able to sit down and rest." 3-7God made that vow, even though he'd
finished his part before the foundation of the world. Somewhere it's written,
"God rested the seventh day, having completed his work," but in this
other text he says, "They'll never be able to sit down and rest." So
this promise has not yet been fulfilled. Those earlier ones never did get to
the place of rest because they were disobedient. God keeps renewing the promise
and setting the date as today, just as he did in David's psalm, centuries later
than the original invitation:
Today, please listen, don't turn a deaf ear .
. .
8-11And so this is still a live promise. It
wasn't canceled at the time of Joshua; otherwise, God wouldn't keep renewing
the appointment for "today." The promise of "arrival" and
"rest" is still there for God's people. God himself is at rest. And
at the end of the journey we'll surely rest with God. So let's keep at it and
eventually arrive at the place of rest, not drop
out through some sort of disobedience.
12-13God means what he says. What he says
goes. His powerful Word is sharp as a surgeon's scalpel, cutting through
everything, whether doubt or defense, laying us open to listen and obey.
Nothing and no one is impervious to God's Word. We can't get away from it—no
matter what. (Colored and italicized added by author.)
It is time to get right with the LORD for all peoples.
The time of judgment is coming soon, be it at our own deaths or when Christ
returns!
More
info on HSCT if interested
Here is a list of others who have gone thru a Stem Cell
Transplant if you are interested in reading and viewing their process. Dr.
Burt's team did HSCT for more than 20 auto immune diseases and had been doing
them for over 20 years, but he is taking a sabbatical as of Dec 2019. The following are just CIDP patients, like me:
Jennifer
Osman (HSCT April 2005) 1st one ever to
do it for CIDP her blog : http://www.caringbridge.org/il/jeno/
Kevin Devery (HSCT
Oct 2007) great videos http://www.youtube.com/results?search_query=kevinlj182&aq=f
Tannia Munoz (HSCT
June 2009) great videos http://www.youtube.com/user/TanniaM3
Lynn Mac Donald (HSCT
Sept 2009)
Alice Dicroce (HSCT
Oct 2009) www.alicedicroce.com
Rossana Roa (HSCT
June 2010) http://rossanascidp.blogspot.com/
Jim Danhakl (HSCT
March 2010)
Jim’s blog : http://www.alicedicroce.com/untitled-page.html
Sharon Mackwell (HSCT
Sept 2010)
Robert Postel (HSCT
May 2011)
Wendy Nash (Chicago for CIDP) http://www.mymedicalmiracle.blogspot.com
Some of the following have had transplants in other places
than Chicago for other diseases than CIDP, feel free to share this information
with others you know that may have the same afflictions.
Carmel Turner (Australia) http://www.msstemcell.com/
Melissa Mann Scholz (CTCI, Tel Aviv, Israel) http://rausausderms.wordpress.com/about-me/
Sandi Selvi (San Diego) www.sandiselvi.com
George Goss (Heidelberg University Hospital, Heidelberg,
Germany) http://themscure.blogspot.com/2009/11/introduction-to-voyage.html
Hannah Vesterager (Karolinska University Hospital,
Stockholm, Sweden) http://www.hannastamceller.blogg.no/
Lisa Varga Curtis (Chicago) http://www.lisashope.com/ http://lisashope.com/lisa-story.html
Lisa's Hope Facebook Page https://www.facebook.com/pages/Lisas-Hope/121667264522651
Elin Maageng Jakobsen (Karolinska University Hospital,
Stockholm, Sweden) http://www.mindevenmore.com/
Tiffany Lilly (Chicago) https://www.facebook.com/groups/214657901943901/
Marc Coppins and Barb Yoder Coppins (Chicago) www.MarcStemCell.com
Andrew Price (Chicago for CIDP) http://www.shakesandstones.blogspot.com
Al Escudero (Chicago) http://www.caringbridge.org/visit/alescudero
Chad Pfefer (Chicago) http://www.caringbridge.org/visit/chadpfefer
Kevin Grace (Chicago) http://www.kmg-stemthetide.blogspot.com/2012_03_01_archive.html
Alissa Lindley Wilson (Manipal Hospital, Bangalore,
India) https://www.facebook.com/groups/184547661595206/
Amy Peterson (Moscow) http://amygoesninja.wordpress.com/
Pheobe Scopes (Moscow) http://hsctmsandme.weebly.com/about-me.html
Bernard Cronjé (University of Cape Town Hospital, Cape
Town, South Africa) http://bjcronje.wordpress.com/
Brian Tilaro (Chicago) http://www.allyoumed.com/
Karina Grunwald (Heidelberg University Hospital,
Heidelberg, Germany) http://healingreen.blogspot.com/
Christopher Martinsson (Akademiska sjukhuset, Uppsala,
Sweden) https://www.facebook.com/notes/christopher-martinsson/a-new-beginning/328987160453332
Shelley Hoffpauir (Manipal Hospital, Bangalore, India) https://www.facebook.com/groups/495592957120300/
Heidi Strauss (CTCI, Tel Aviv, Israel) http://www.caringbridge.org/visit/heidistrauss
Tammy Kazen-Richert (Moscow) http://tamstopms.wordpress.com/
Jeff Root (Moscow) http://rootingoutms.wordpress.com/
Brooke Slick (Moscow) http://msslickdotcom.wordpress.com/
Article featuring Brook and her HSCT treatment choice: To
Russia with faith; New Enterprise woman seeks medical procedure abroad with
hopes it will halt her multiple sclerosis http://www.altoonamirror.com/page/content.detail/id/569327/To-Russia-with-faith--New-Enterprise-woman-seeks-medical-procedure-abroad-with-hopes-it-will-halt-her-multiple-sclerosis.html?nav=738
Russia MS Treatment Successful http://wearecentralpa.com/fulltext-healthcast?nxd_id=466672
Chris McGuey (Ottawa) http://my-end-to-ms.blogspot.com/
Claire Gittins Parry (Manipal Hospital, Bangalore, India)
http://www.clairetoindia.co.uk/
Labour of love for the seven-marathon man http://www.standard.co.uk/news/london/labour-of-love-for-the-sevenmarathon-man-8638938.html
Geoeffry DB (Manipal Hospital, Bangalore, India) https://www.facebook.com/groups/113034538879355/
Holly Hauser (HSCT for Systemic Sclerosis (Scleroderma)
in Chicago) http://holly-kfs.blogspot.com/
Dave Bexfield (Fred Hutchinson Cancer Research Center,
HALT-MS trial, Seattle)
Martin Melly (India) http://mymshero.com/
Gala Kuper (Moscow) http://torussiawithhope.wordpress.com/type/aside/
Michael Childs (Chicago for CIDP) http://www.gofundme.com/stemcell4michael
Sheli Godbold Smith (Moscow) http://kissmsgoodbye.wordpress.com/
Kristy Cruise (Moscow) http://www.movingmountains2013.com/about-me/
Emily Reints (India) http://emilyvsms.wordpress.com/
Lisa Stallings (Moscow) http://fromrussiawithlisa.wordpress.com/
Min Beattie (India) http://aca.ninemsn.com.au/article.aspx?id=8605305
Monique Leventer (Chicago) https://www.facebook.com/groups/525906880800629/
Jorunn Andersen Hustveit (Israel) http://msstemcell.blogspot.co.il/?view=classic#!/
Vicki Taylor Wilson (Moscow) http://kickinms.com/
Jerry Marting (India) http://www.jerrymarting.com/200366156
Toni Brennan (Heidelberg University Hospital, Heidelberg,
Germany) http://tonibrennan.wordpress.com/
Bryan-Ann Hinkle (CIDP, Chicago) http://www.bryanhinklesct.blogspot.com/
Cindy Don Bisagno (India) http://cindyfightsms.tumblr.com/
Keith Moore (Moscow) http://hsctinrussia.weebly.com
Nicole T. Baer (Chicago) https://www.facebook.com/groups/149103351840242/527467584003815/#!/groups/nicoletba
The “H” in the above acronyms of HSCT is for
Hematopoietic. Those are the blood cells that give rise to all the other blood
cells. As stem cells, HSC are defined by their ability to replenish all blood
cell types (Multipotency) and their ability to self-renew. When the chemo is
given, it depletes the blood stream of its antibodies which are currently
attacking other parts of the body (myelon sheaths, brain cells, spinal cord,
etc.) thinking it is fighting off something bad, when in essence it is fighting
itself wrongly and causing our diseases (MS, CIDP, Scleroderma). When the
antibodies are destroyed, the immature (Hematopoietic) go in and replenish
where needed, everywhere; and the antibodies “forget” to attack! It’s like
rebooting a computer that has a virus. Get rid of the virus, restart the
computer and VIOLA! No more trouble!
Here is a Facebook page to join for more information about HSCT and where it can be done.
https://www.facebook.com/groups/1668739693370524/
Week
#5
April
2012
Well, it certainly
was a busy week! Sunday I stayed in and rested after a busy week and having to
say goodbye to Eddie on Saturday. Then I got showered and dressed for my
brother and sister in law coming to visit. We sat and chatted a bit then went
to dinner at The Grand Lux. That is such a cool place, and good food. I had
Asian Nachos, yumm-o! It comes with 8 nachos and rice in the middle. I ate 4 of
the nachos, not much rice and had a banana pudding dessert. Leftovers on Monday
were just delightful!
So, Monday I had the heart catheterization! After getting
all prepped for it, a young woman doctor (fellow-in other words, beginner!)
came in to talk to me about the procedure and explained what was going to
happen and then an elderly doctor (about 80, I kid you not) came in to see me too
and go over everything again. No one said who was going to be doing the actual
procedure, but I found out soon enough. For the procedure you go in this room
with lots of funky looking machines that remind you of a good horror scientific
movie scene! Well, maybe not that bad, but pretty intimidating, nonetheless.
You lay on this skinny bed--slab might be a better definition, they even have
to add arm holders on the sides so your arms just don't drape over the edge and
wrap them to your sides and I even hooked my thumbs under my bottom so they
wouldn't fall off the bed (not my thumbs, but my arms)! They cover you with
(thankfully warm) blankets and remove your beautiful gown! I have already been
shaved on both sides of groin in case they need to move from one side to the
other to do the procedure (we were able to stick to the right side). Next both
doctors come in and the fellow is the one going to do the procedure with the
elder by her side, whispering all the while. She did a great job in my opinion
and I'm sure she will be a very good cardiologist or whatever when she comes
through all her schooling. The needle pinch and lidocaine that burns a bit
going in I'm sure is better than not having it at all but it didn't hurt as
much as when the port catheter that was put in my neck for the stem cell
harvest – location, location, location must have something to do with that
reaction. Ok, so then they poke open to place the line wire to go up to the
heart. That doesn't feel too bad and I was able to watch it on the television.
Once they got it to the heart the televisions and other machines moved around a
lot so I didn't get to see as much. It felt a bit weird from time to time just
moving around in there and when she pushed the dye in to color the blood to see
the actual arteries I got a see a few of those shots, that looked really neat;
like a tree with the roots going down in the ground. It took quite some time as
I imagine there are a lot of places they have to check, so you lay there and
lay there. During these type of procedures I just kept asking Jesus to hold my
hand and keep me calm - the song that came to my mind was "Jesus, take the
wheel" by Carrie Underwood! In the end, though, all went well and the
elder doctor says to me on his way out "Just stay away from stress
tests!" That statement made me laugh! Later, the younger woman doctor
reported to me that my heart looked beautiful and my arteries are ones they
don't get to see very often there! Yippee!! Good report!
So, the next procedure was on Wednesday to have my PICC
line put in which is where all the meds, chemo, blood draws will go in and come
out of! Yea, no more needle sticks; I look like a pin cushion.
What a story to tell about this whole situation. The nurse
that brought me in was named Anthony and he was such a blessing to me all
morning. He had cancer and worked through that situation successfully with the
Lord's help and we had a nice chat about that. But, while he was bringing me in
to the "holding stall" so I shall call it, he was saying my name for
identification purposes and a woman across the hall heard it and thought to
herself, "I know that name!" She kept quiet a while during the time I
was changing into the gown for the procedure but soon we were chatting and she
said “I know you from facebook!” Well, imagine my surprise at that! Her son was
in for a procedure that was not going to be able to get done at that time and
they had been there all morning. It turns out that we are friends because she
has the same disease I do and she lives about an hour south of here. Her name
is Teresa Richert and her son is Brad. We chatted quite a bit and got some good
hugs in too! We both are faith filled women and had some nice "God
talk" too. We both felt it was meant for us to meet even though it was an
inconvenience for and her son, but hopefully his situation will be able to get
fixed so he can get what he needs and they learned a bit more about his problems.
The PICC line went in after having to try two different
places (the 2nd one worked just fine; and what's one more poke in my arm
anyway?). It bothered me most of all the things as it ends up right in the
middle of your chest and feels funny. I lay on my left side to sleep mostly and
really felt it, so I had to adjust to
that but some nights I could actually lay on my left side fairly well and not
notice it.
Okay, we are up to admission day, Thursday. Early day,
7:30am I am to be at the hospital. I think I have the best room on the floor!
I’m in Room 1566 in the Prentice Women's Hospital. Top two floors are for
transplant patients, rest of the hospital is for the babies!
The
beautiful view from my room!
I got started with Rituximab which is an immune
suppressant so it doesn't fight the stuff coming in. In the evening I got a
dizzy spell for about a 1/2 hour and the call button was across the room (we've
learned to put it where I am sitting) but I knew the nurse was coming soon to
give me my evening meds, so I just patiently waiting rather than risk getting
up and falling. When she came in, I got up carefully and went to the bathroom
to get ready for bed and lay down and went to sleep. All was well after that. I
get those episodes every once in a while (about twice a month at no particular
time or reason; meds, time of the month, whatever) so I don't know if it's CIDP
or just me.
Friday; getting Rabbit ATG, which is a T cell
suppressant. Since I woke at 3am this morning, I was looking forward to the Benadryl
nap, but the Rabbit "juice" likes to bubble up and there were lots of
beeps to keep me awake and the nurse had to keep coming in to fix the line.
Then when that was cleared up, about 6 times at least; the allergy doctors came
in to check to see if I was still allergic to Penicillin. I was very young when
diagnosed with that, and they say in about 10 years you can be over it and
since it was probably over 40 years ago, the chances are good that I'm not
anymore. Lots of pin pricks and jabs into skin (like the TB test) and that went
on for about 2 hours, so needless to say, no nap for Wendy today! Hopefully, good
night’s sleep to come! The good news is there was no reaction to the test, so
they will be able to give me the meds they want to when I may need them from
the penicillin family.
I’m going to watch church now on the computer; I can also
watch video sermons from the church I go to in Florida.
Today, Saturday, is the day I start the chemo
(Cyclophosphamide) and lots of other drugs to keep away nausea, headaches, etc.
The chemo is now in me and so is the Benadryl, so I'm getting sleepy again. I
feel fine otherwise, but lots of folks say after day 3 of chemo the reactions
start, so we will see. I am so covered with prayer and I know God is right here
with me; I will handle it all with His grace and help!
more to this story...
April
2012
Friday, April 20th
Today I receive Rabbit ATG, which is a T-cell
suppressant. The T-cells are the ones that go after things that come in to your
body that they don’t know or recognize and they fight them off. They would,
therefore, fight off the Cyclophosphamide (chemo) that gets rid of the other
cells we don’t want at this point. I get the Rabbit ATG for 3 days and then
starting Saturday, April 21st I will get Cyclophosphamide for 4 days.
Another thing that happened today is that I was able to pull
out clumps of hair. FINALLY! Ok, I am a little odd here in that I was very
anxious to get to this point so I could shave my hair off! I actually am
looking forward to embracing my baldness! I got so many scarves, caps, hats,
pins, ribbons and bows to wear, I always teased that I was going to have the
“best dressed head” on the floor! So, I went in to the bathroom with my little
electric razor and started the shaving process! Everyone prior to me that I
followed on their HSCT process did a little Mohawk when they shaved, so I had
to try it myself.
Then I ended up leaving my bangs only; I just couldn’t
give them up. And, I got a lot of comments (mostly nice ones) from the staff so
I kept them until they started falling off in my food! Then, they went bye-bye
too.
The next couple of days are rather quiet and uneventful
(thankfully). I think it’s around Monday
or Tuesday when I start with the loose bowels and therefore sore bottom. My
nurse, Sophia; bless her heart, had such compassion. She got me Tucs, Desitin
(like for a baby’s diaper rash) and the very soft, moist wipes to clean myself.
Let me tell you and forewarn those of you following, that chemo toots and bowel
movements are the stinkiest you will ever experience. Fortunately, Linda Martin
(previous HSCTer) told me to get a spray air freshener and keep it handy! That
was a good piece of advice!
Sophia
4/21/12
Midnight; my PCT (patient care technician) is Georgia, but I didn’t see her
much. Dee replaced her at 8am, she’s a real sweetheart. Busy day, woke at
3:30am, so I’m tired. I seem to have a 3am bladder wake up call. After laying for over an hour, I’m still
awake; but I was able to lie on my left side, my favorite side, without the PICC
line bothering me like it had the last two nights.
Sunday, April 22 eve/Mon, April 23 morn
I got some decent sleep, 9:30pm to bed; blood @ 2:00am,
bathroom & back to sleep. I didn’t wake until 5am. Even with ear plugs and
eye covering mask, it's hard to get a good night's sleep in a hospital! I woke
up to being dizzy again, got help to go bathroom. They do an EKG before
administering the Cyclophosphamide, and this morning's test was a very slow
reading. It seems that the machine got switched to a half reading so it took
longer and read weird. They had to do it over. I'm still dizzy & doc came
in to see me.
Said to doc that dizzy comes & goes; I get it 1 or 2
x per month, sometimes it lasts couple min or an hour, but the last one was the
worst which was after the mobilization dose of Cyclophosphamide (about 7
hours), so time will tell. Hopefully it will not last all day or long time. I
feel bad because someone has to come and help me go to the bathroom every time
so I don’t become a fall risk. That I appreciate but you really feel tethered.
Better safe than sorry. Sunrise time and I’m seeing the pretty pink through the
screen.
Blood work decent, electrolytes look good, EKG is okay!
Tues, 24th 6pm
Pretty useless day, healing day! That’s what I’m calling
it. Praise God, no pain or nausea. I had a little burping so I got some
Zophran. Still breathing heavy, so just did a lot of resting which is good and
then heard from my friend Tanya, which was great. Things are ok at home, Eddie
is dealing w/ IRS since paperwork was done wrong at our financial institution;
but it will get fixed, I’m sure. I’m praising God for that. Feeling the prayers
from everyone, I appreciate it so, so much. It put me in a mood of praise
myself and that feels so good.
God, I love you so much. I praise you, adore you and
worship you. Thank you. I lift Stephanie to you Lord and Shelley and the CIDP
people! May they rest upon you Father and feel your great love. You are so
worthy of our praise Lord. Thank you.
I got my Cyclophosphamide today and tomorrow I get a day
off. Thursday I get my stem cells that were harvested and Friday I will get
another dose of chemo (different kind though). Just one more! Yee haw!
2:45am
Woke up with hunger pangs, as I didn’t eat a lot today
(yesterday really) so I have some Ensure on the table and asked for a cup of
ice to help. Feel better in the tummy and helped my headache too which could be
because I was hungry or because I wear my eye mask around my head all night!
Nothing like having something wrapped around your head all night, but if you
don’t it’s hard to sleep. Now, little bendy straws present a problem with
drinking the Ensure; when you drink from them, they want to drip little brown
spots on your nice, clean gown and it looks like you’re lactating chocolate
milk! Ha ha ha. Well, you know, we are in a women’s hospital with lots of
babies, so…guys, I don’t know about you but we women have a good excuse!
Wednesday, April 25th
I’m really tired today. When my housekeeping gal, Andrea,
comes in we kid around a lot but not today. I think I barely got a wave to her.
I’m thinking I’m beginning to get neutropenic and started with a bit of a
fever, so I get to get another antibiotic.
No
denying it...
Sunday, April 22, 2012
I read my bible yesterday, I’ve been sporadic about that,
but been busy, tired, etc.; excuses, I know but back at it now and enjoying it
very much. Listened to Faith Baptist Church sermon on computer and it was about
Peter’s denial of Christ 3 times and his repentance and getting back in the
good graces of the Lord. Good service. I pray that I will not ever deny you,
Lord if put to the test. Lord, give me the strength for staying strong in you
and not being fearful of being a follower of Christ. That is my fear, that I’m chicken.
When we are with our Christian family, it’s easy to say how wonderful He is,
when you are standing alone and have people against you, it’s easy to keep your
mouth shut. I just pray I do not deny! "He who is in you [me] is greater
than he who is in the world." 1 John 4:4b (NKJV). This should help me be
strong enough to do the admittance when the time comes. I think the time is
getting closer when we will be put to that test, I don’t want to fail Him.
New
Birthday and beyond....
April
2012
Thursday, April 26th
STEMMIES GOING IN TODAY!! What an exciting day! It is a
bit like Thanksgiving dinner, you work hard and long to get this most beautiful
feast together, hours are spent prepping, baking pies, and peeling vegetables,
cutting, chopping, slicing, and carving. You set a pretty table with your best
china and your best silverware. You use the crystal glasses and put all the
food in your special serving bowls with the really big spoons. The centerpiece
of the table has to be perfect and appropriate for the event. Everyone’s been
invited and you gather around the table for a good prayer of thanks, sit down
to eat and.... it’s over in 20 minutes!
The first to come in of the transplant team is the man
with my frozen batch of stem cells. He is quiet and professional. I tell him I
have heard about him from others, that he is “the quiet one” and I am rewarded
with a smile. He gets busy thawing out my cells (runs them under the hot water
in the sink) and then the rest of the “team” comes in. My nurse to do the
honors today is Eric. He starts setting up the equipment on the IV pole for the
infusion to begin. Dr. Burt, Amy and Dr. Han join the crowd and the process
begins! Amy stayed with me the whole time, but the others ran in and out after
the cells finished running in to me; only took about 25 minutes. They have to
monitor me pretty closely, taking vitals every 15 minutes. I did very well
through it all and had no issues at all.
Eric
Dr.
Han, Dr. Burt, Amy (RN) & I after my cells were administered
It was a very
emotional day, in a good way. I got good mail, a book about sisters from my
sister that she added a bunch of pictures of the two of us and our Mom and her
sisters to the pages that just had me bawling my eyes out. I also got a great
gift from my friend Shelley from Arizona that was befitting of the day. She
sent me 3 stretchy headbands made of beads to dress up my head, they are so
cute. With this present, she sent a card that touched my heart. It was a
picture of a beautiful white long-haired cat with a tall crystal crown on its
head. It represents to me being a princess and daughter of the King!
I was hungry after the transplant; even though I thought
I would need a nap, I didn’t. I laid there for a while trying to fall asleep
but that didn’t happen, so I said I’ll have some turkey and cheese on 1 leaf of
lettuce (chuckle) and some chocolate ice cream and ginger ale for burps. And,
by the way, the chemo gas is pew…strong and not just air; so you need to
protect your panties folks! They do have underwear liners that are of good size
(after all it is a Women’s Hospital for having babies) that will take care of
it. Gonna go for a walk now…later.
Chemo nightmares!! Not a pleasant experience. I was told
about the nightmares ahead of time but didn’t really think about them before
they happened. The good part about them was I played the “hero” in my dreams! I
had to save the world from a fire that came up from the pit of the earth. I
actually “dug” myself into the middle of the fire to bring up dry earth to put
it out. Yeah, me! In the next one, I saved another patient who checked himself
out of the hospital, pulled out his PICC line and was driving away from the
hospital. He was stopped by a cop and I came along to keep him from either
being arrested or bleeding out! I got him back into the ER just in the nick of
time! There was a 3rd dream, but I don’t
remember that one, but I’m sure I saved more lives! I’m so healthy with all my
new stem cells in me that I can take on the world!! However, when I woke also
had the shakes and diarrhea and a sore bottom to go along with it. Saving the
world is hard work!
My
future is so bright, I gotta wear shades!!
Friday, April 27th
I woke up this morning with a tummy ache, nothing major
but just not feeling too good. Ate my breakfast, vanilla yogurt and a not much
else. Had to take the usual bunch of pills (about 6 of them) and uh oh, here it
comes! Caught the first little bit in my hands and fortunately my nurse,
Stephanie, was in the room! She ran to the bathroom to get the pretty pink tub
for me to up-chuck in! There went all my pills in round two! She ran back and
forth with about 3 different tubs for me because when you up-chuck yogurt, the
smell is enough to make you up-chuck more! She brought me a wet washcloth too
to clean up several times between vomiting, bless her heart. She hustled so
quick back and forth between me and the bathroom to throw out the vomit and
wash out the tub and get me a clean one for the next round, it was amazing! She
would have won a marathon! She did in my book!! I haven’t thrown up for many
years, since my girlfriend Tanya and I had food poisoning. I don’t have to
remind myself it isn’t pleasant.
Stephanie
My girlfriend Tanya
After that I was relieved to not have to take my pills
again until a later time and I got some Zophran thru my PICC line and it was my
friend from then on whenever I started to feel nauseous, I would get some.
Today I was introduced, by recommendation of my nurse, to Ensure! What a good
thing this was, I loved it and over lots of ice it is just delicious! Gives you
a good amount of protein and helps you have more energy since you don’t feel
much like eating at this point. It almost tastes like a treat; like pudding in
liquid form. Delicious!
Time
after HSCT
April/May
2012
Sat early a.m. 28th
Friday I had chemo, did pretty well thru it but around
7pm I got dizzy again. Went to bed around 10pm and was still dizzy but when I
woke at 1:30am I wasn’t dizzy anymore. Dr. Burt should be in to see me in the
morning, hopefully he will be pleased and hopefully my numbers are going in the
right direction. I don’t know what are in the plans for tomorrow with the meds;
maybe just some antibiotics. So far; so good. I had the most pleasant experience at this
point. As I lay in my bed I felt like I
was being cradled in the arms of my Heavenly Father. If you can picture a set
of hands cupped together with me lying in the middle; that is exactly where I
felt I was. It was the most peaceful feeling I think I have ever known. I spent
time with my Father, had a little snack (Ensure again and a rice cake), was
able to have a private time in the bathroom, and fell peacefully back to sleep.
Thank you Lord, you’ve been such a blessing to me. If
someone wants to know the plain truth of why I feel the way I do about my
belief, it’s so simple. Knowing in your heart, in your very being, that there
is a God that made the heavens and earth; and that He sent His son to die on a
cross as a sacrifice, for you, for me, for anyone to be forgiven of our sins
and share a place in heaven with Him. If you believe that, it is so
uncomplicated and it gives you a peace that goes beyond all understanding. Then
you know you have a place for eternity and are in a right relationship with the
Father. It is such a comfort, so overwhelmingly peaceful.
Sat, April 28th 6am
The wind is blowing like crazy, not sure if it’s raining
or sleeting or snowing! But, it is definitely windy. I haven’t turned on the TV
or asked anyone yet, but I will. No sunrise this morning, it’s covered by
clouds, but there is definitely one in my heart.
Got woke up about 4am with news that my hematocrit count
was at 7.7 so I had to have 2 units of blood and some potassium, the potassium
part isn’t unusual for me. Got that right away, but it takes a while for the
blood to come up from pharmacy. Once that got running, I started to feel a bit
better, I was definitely feeling like a weak little puppy there for a while.
Had a most beautiful sunrise this morning! After the aide
helped me to the bathroom, I could see the sun through the screen of my window
just getting prettier and prettier, I managed to get up and go over to lift up
the screen (blinds of a sort) and I took about 10 pictures. Oh, the Glory of
the Lord in the morning, it was just beautiful and really blessed me.
Day +2 today, I am
neutropenic now, counts are at .6 that means the numbers are going where they
are supposed to. And I feel good, I
really am feeling good; I know it’s all in the good Lord’s hands.
My nurse, Alex, just brought in my blood results and I am
officially neutropenic; “TLTC” Too Low To Count. That means being extra
cautious, washing hands, keeping clean, have vitals every 4 hours instead of
every 8 hrs. If I walk the halls, I have to wear gown, gloves and a mask. And
visitors must be extra careful too. This is just as expected and numbers are
where they should be at this point! I’m smiling!!
Sunday, April 29th
Dr. Burt just came in, we talked about how I was feeling
and that I will be getting another unit of blood today. We were also talking about
the sunrise and he said something I found very special and want to share it
with you. He was telling me how he loves to watch the sunrise over the lake
whenever he can; he says it’s like “watching a moving mural from God”.
Monday, April 30th
Last day of the month, feel really good today! Overnight,
there was a minor issue that God took care of as only He can! My nurse Alex was
going to tell the PCT Carmellita to let me sleep until blood draw time of 3am
instead of waking me at the 4 hour time of 1:30am for vitals, but she forgot
(that was the God part). So, while Carmellita was taking my vitals, Alex came
in to do the blood draw at this earlier time and it was good thing because my
lines were clogged and she had to order certain “cleaning out” fluid which has
to sit in the lines for an hour to break down the clog. If she had come in at
the 3am time instead of the earlier time, she would not have gotten the blood
draw in time for the early morning reading that has to be down to the lab by a
certain time! Thank you Lord!!
While I was awake I had an Ensure and a couple of rice
cakes because I was hungry! I guess having something to eat is a good thing; it
will help me get stronger, yeah! I was also able to sit in the bathroom and
take care of that business in private. I sure hope when this is all over and
I’m out of here I don’t wake up at 3am to go to the bathroom! But, for now, let
it come when it may.
I was able to go back to sleep and I slept until 5:45am.
It was cloudy this morning so I wasn’t able to get a sunrise picture today but
that’s okay, you can’t have a beautiful sunrise every morning but it’s still a
beautiful day – This is the day the Lord has made, and I shall rejoice and be
glad in it!
Tuesday, May 1st
Starting about 7pm last night, boy did I get a headache.
It started just slightly but by 8pm it was much worse, so I went to sleep. Woke
up about 9 and it was a little more; probably put it at a 7 out of 10 pain
wise, so I called in the nurse and got some Zophran for my tummy, because that
was a little iffy too. She called the doctor on call and he just wanted to give
me some Tylenol, well I wanted to laugh; Tylenol doesn’t do anything for me, so
I got some Norco and I slept pretty good, waking occasionally with the headache
at about a level 4. All I have to say to those who do this behind me, is don't
try to be superman; if it starts to hurt or you get nausea, ask for medicine!
If it's bothering you, they have a pill for that! haha! Actually, it's much
easier on you if you can stop the pain/nausea before it gets too bad than wait
and have to fix it later and it takes more meds to help.
When I woke this morning about 4:30am to visit the
bathroom, I just felt lighter like I had lost a lot of my body fluids. My feet
and toes felt better and my stomach felt smaller too. I was retaining a lot of
fluids and my feet and lower legs were really swollen. My poor little toes
looked like sausage links. I don’t know if it helped, but I lay upside down on
the bed with the head of the bed elevated so that my feet were elevated too! My
mom and mother-in-law used to do this when they felt bloated in the legs/feet
and I thought it might be worth a try! It seems to have worked pretty well!
A
friend comes & I'm discharged!!
May
2012
Wednesday, May 2nd
Jackie came on at 8pm (actually still Tues the 1st),
start of headache, and the question is; do we wait to see if it gets worse or
do you nip it in the bud? We decided to stop it early and got the Zophran right
away and the Norco for the headache. Went to sleep and 1:30am they came in to
draw blood and we had good flow out of the PICC line tonight, Yay! I do have to
sit up though for this to happen for some reason, it just works better for me
that way, so I just do it. And then I usually go to the bathroom and get
weighed and vitals done. I finally lost a lot of the water weight, about 10
pounds and feel so much better, so much less bloated! I had an Ensure since I
still do not want to eat a lot of food. Stayed awake for a little while,
watched some of the weather channel with this guy who took pictures in Puerto
Rico; down in the caves and up in the mountains. It’s such a beautiful island.
I actually got engaged to my first husband there.
Jacky
When Jacky came in about 5am I needed platelets, my
numbers are at 7! Which is my favorite number and it is the number of
completion, biblically. I shared a bit of my story with Jacky and got a bit
teary eyed as to how blessed I have been through this whole process.
It’s a quiet, peaceful morning here; not much color in the
sky yet. If not too colorful, I probably won’t take a picture. It’s supposed to
be 85 degrees today! You never know what you’re going to get, weather-wise. Not
that it matters to me, being inside all the while. It’s supposed to get cooler
again over the week end.
Thursday, May 3rd
Overnight, I was awake, asleep, awake, asleep. Nothing
bad happened, but did have some nausea and headache medicine before I went to
bed. Wake up for blood draw, drink an Ensure. Wake for vitals early. Needed platelets again today (#3) and those
wonderful Neupogen shots to get the blood cells multiplying! I’m at day +7 and I will keep getting the
Neupogen shots until the numbers start to rise – so, rise numbers, rise!!
Beautiful sunshine this morning, I slept through the sunrise but I imagine all
will enjoy the warm sunshine today.
I’m getting company today!!! Yay, my girlfriend Carol is
coming up from Florida to stay with me for about a week! I’m so excited. She
and I share the same birthday and we’ve been friends for about 15 years. It’ll
be good to have her here, we laugh a lot! She owns her own business and can use
the break as well! Works well for both of us. She brought me CHOCOLATE!! And a few other
little goodies, she is such a good friend! She knows I’m gluten free, and she
brought some yummy GF treats.
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Carol
and I. This is a post HSCT picture; we didn’t get to get a picture together
when she was up in Chicago with me!
Before Carol got there, I took a shower (nice of me,
huh?) and noticed a slight rash on my lower left abdomen. Hhhmmm, wonder what
that’s about. I showed it to my nurse Carolyn, and she said we will keep an eye
on it.
Carolyn
By the time they came back to give me my evening meds, the rash had spread farther
across my tummy and was under my bandage at my PICC line (which concerns me
most, of course) and up and down my right arm and hand. I noted that my
knuckles were very dry and rough the last few days but thought it was from
washing my hands so often and using the sanitizing stuff. I did have to get platelets again, which you
get Benadryl and Tylenol prior to that, and the rash is still spreading not
getting any better! Tomorrow the dermatology team will come in to take a look
at it.
Friday, May 4th
Waiting for Team Burt to check on me and let me know how
my numbers are doing! Today is Day +8
and all is going well as expected. Dermatology came and examined my rash. No
action taken at this point, we’ll just see how things go from here.
I had a bag of platelets and one unit of red blood cells
as a boost, when you get them they usually raise your blood counts by one point
and I was at .2 and it should put me over 1, which is why I may get to go home!
Saturday, May 5th
1:15 am, my nurse tonight is Joe and he just came in to
draw blood. I didn’t need any meds
before bed tonight, Yay! No nausea or pain meds which have been the norm for me
before; but I do have a little discomfort from the injection sites of the
Neupogen, just not enough to worry about.
I got a bed that is different than most of the others here that I have
heard about in that mine doesn’t “blow up and release”. I think it’s been a
blessing though because the bed makes a lot of noise when this occurs. I just
have to roll back and forth, right side, left side and a little on my back. I’m
not much of a back sleeper because I don’t seem to be able to breathe as easily
in that position. If I put the top of the bed up a little bit, that works okay.
Everything is going just wonderfully, I’m glad to
say. I had my middle of the night usual
ritual of toilet time, Ensure, a little TV watching and then back to sleep.
Awake again at 5:30am with just a little back pain in the lumbar area from
Neupogen. I might do a Norco, perhaps. And I might get discharged today!
Yes, today is the day!! Blood count is up so I can
leave!! The best part of the whole day was getting the PICC line removed! My
regular nurse was leaving early, so another nurse I had met only once before
for a short stint was the one to do the honors. This is a picture of how long that
sucker was that was in my body. It went from my inner arm (just above my elbow
joint) to the center of my chest.
This is Lauren, wonderful nurse who removed my PICC line…
Thank
you Lauren! So much more comfortable
Carol came in to this good news and we packed up my stuff
and went to say good bye to some folks on the floor! I also had to wait for
something before we could actually leave the floor and when we could we walked
over to the Galter Pavilion to the Walgreens there to get my prescriptions, and
they were closed! They close at 4:00pm on Saturdays and it was about 4:10pm. It
took all I had to make that trek, which is only about 2 blocks but that was all
I could do. We took a taxi back to the apartment. Got hold of Amy and they transferred the prescription
to the other Walgreens. I appreciate Walgreens for that perk, you can order
from anywhere and they can get it for you from any other Walgreens, even in
another state! Those of you following me for a HSCT, this is a good note for
you to get settled in a Walgreens near you if possible so you can do the
same. As I rested, Carol went to pick up
my prescription (she only needed to know my home address) then we order Thai
food from Grubhub.com. It tasted so good, because we got home about 5:00pm and
until we decided and they delivered it was about 6:30pm and we were HUNGRY!! I
had to take another pain pill for my achy back and about 7:30pm I crawled back
in bed, talked to Eddie a little bit and then just crashed. It felt so good to
lie down on a real bed (queen) and spread out if I wanted to! To be able to
roll over without having to lift my body and turn side to side is great! Slept
until 11:15 when I woke to use the bathroom and I took my Clonazepam (like
Xanax) and slept until 4:30am. Woke for a little while again and went to the
kitchen to set up the coffeepot for when Carol woke up and went back to bed and
slept again until about 7:30am!
Sunday, May 6th
I got up for breakfast, spent a little time on the
computer; facebook and my e mail. I actually managed to stay up until after
lunch, and then I took a 2 hour nap. At about 5:00pm I was able to remove my
bandage off the PICC line incision and take a shower! Can l tell you how
glorious that felt? I wasn’t tethered to an I.V. pole nor did l have to wrap my
arm in saran wrap to keep the PICC line dry. The rash is still pretty prominent
and tomorrow I go for blood work, so I will make sure they know it is still
present. Other than that, I am feeling pretty good. I’m going to get dressed
and maybe take a walk down the halls in this hotel!
Monday, May 7th
We went to Galter Pavilion this morning for my blood
work; I don’t know when the results will be back from that. Took a cab today to
and from everywhere, feeling pretty tired. We went to the Castle and the Elephant
for lunch then went back to the apartment and I took a nap. When I woke up I
was a bit hungry since I only had soup at lunch so I ate some leftover tuna and
crackers. Ate dinner and went to bed early. Carol is still here and she is
reading a lot and just relaxing herself. Being a business owner this has been a
good break for her (so she says, she’s a good friend to come babysit me!).
Tuesday, May 8th
I still got the rash, using hydrocortisone ointment on
it. They told me to stop taking the Diflucan, because it could be what is
causing the rash. It has spread all across my torso and arms and it itchy as
all get-out! Ointment is not really helping, neither is the prescribed
anti-itch medicine! They are going to
have me up my prednisone to 60 mg for 3 days, 40 mg for 3 days, then 20 mg for
3 days, 10 mg for 1 day and back to my normal 7.5 mg to start the decreasing
regime I am on. If this is the only bad thing that has come of this whole
transplant process, it is so worth it. Other than that, I’m just still tired
(of course) and weak. If I do a little something, I get so tired. Carol went
out grocery shopping for me this morning and made a grape salad which looks
absolutely scrumptious. We had lunch from downstairs today, Carol had a huge
Greek salad and I had chicken salad and French fries and we both have
leftovers.
Wednesday, May 9th
Carol left today, we had such a nice visit and I am so
thankful that she was here for me. It seems like whenever I needed someone when
something was going to go wrong or when I needed extra help, God always had
someone here for me at that time! Ruth Ann was here when I had that dizzy
episode, Eddie was here his first time when I got the fever and needed to get
to the ER, and Carol when I needed help with getting me and all my stuff out of
the hospital and back to the apartment. Of course, God himself has been with me
through it all in a way no other could be! When I was here alone, I seemed to
get along just fine and nothing happened that required anyone else but Him and
me!
After
the transplant to + 5 months!
May
> 2012
May 10th thru 19th
I think I was allergic to one of the meds they gave me
before the transplant; it took about a week to 10 days to show up. It was the
one that is a cousin to penicillin. They did that penicillin test to see if I
was still allergic; but I had just had some Benadryl; so did that mask the
penicillin test? That sure makes me wonder. They gave me some different cream,
but it doesn't seem as effective as the cortisone. This, too, shall pass.
Thankful for everything... BTW, I walked all the way from St Claire St to
Walgreens to pick up the prescription, and then the rest of the way home with a
couple of rest stops.
May 19th
On our way home today!! I have had a nasty allergic
reaction rash to a medicine given to me. It went from mid-line of my body, down
and upward. I went to a special transplant dermatologist team to try to get rid
of it but it kind of has to run its course. They've given me things to deal
with it, but nothing will make it go completely away. Through the whole process
of the transplant, this has been the worst part. I certainly can't complain
about that but I will tell you it is quite uncomfortable. The worst part now is on my face and head, so
I got a note from the doctor yesterday so I don't get kicked off the plane! I
will be wearing a cap and mask, so most people won't really see the rash, but I
don't want to take any chances. There is nothing "catchy" about what
I have, but people can panic (understandably). So, we will be home tonight and
happy to sleep in my own bed and sit on my own couch!
The Seneca Hotel has been such a blessing and so much
"a home away from home" in which I have felt safe, comfortable and
content. It's just a shame they are turning them into apartments and will not
be available for any future patients that come up for this procedure. A lot of
the nice people that work here will no longer have jobs either.
I am so thankful that Eddie was able to come during this
last week, I could never have gotten ready to ship the (3) boxes home and pack
everything else, get to all my dermatology and other doctor appointments; let
alone desire to either cook or get food to eat while feeling a wiped out as I
was from the rash and the transplant itself.
Getting home is such a wonderful feeling after being away
for 2 months! Sleeping in my own bed is glorious!!! Now, if I can just get rid of this rash.
May 24th
Paula spoke with Dr. Burt. She told me to stop taking
Fluconazole (Diflucan). Let them know if it gets worse. As for the itching, I
can try hydrocortisone cream, 1% which I used in Chicago to no avail. I did the
nebulizer thing in lieu of the Diflucan. First part is the albuterol which is
no big deal, but the other medicine is yucky tasting and you have to do it for
so much longer and it makes your jaw tired, holding the breathing tube between
your teeth. I had a few questions after the treatment started but no one to ask
since I spoke to the pharmacist prior to treatment but didn't have a number to
call him back. I did my best then called and spoke to a respiratory therapist
this morning and she said it sounded like I did just fine. So glad to only have
to do that once a month!
May 31st
I called and talked to Paula again since I had a cold
sore in my mouth. It’s improving and no more popping up, thankfully. I'm thankful
that Dr. Burt is not the "take this pill" kind of guy and went with
the salt-water remedy first! My rash is
just about all gone, residual dryness and itching a bit where last was active.
Lotion, lotion, lotion. Dermatologist appointment yesterday went well and they
saw nothing to be concerned about either! She also shared with me my lab work
from my most recent blood draw! How in
the world can my lipid numbers jump so drastically in such a short period of
time? Holy cow! My lipid counts were through the roof! Apparently this is a side effect of the
transplant. It’s nothing to worry about unless they stay high. Just watch
future blood work.
June 7th
Now that I have been on 7.5mg of prednisone for 1 week,
my rash is coming back where it left off. It never went totally away until
after I took my prednisone. Early in the morning I could see/feel traces of it
at the fold of my elbows and underarms and under my breasts. Now, it is
stronger again under my breasts and a little lower (on upper abdomen), and at
the sides of my breast and at my underarms and upper/inner arms. Along with
this seems to be a shakiness in my hands/fingers that is not there when the
rash was not as prevalent. I was shaky when rash was present previously, if I
didn't mention that earlier. Should I
try Benadryl? I really don't care to go back to the dermatologist, as it was
very far and the doctor didn't seem all that interested. His intern was more
helpful; but since I had no rash then to speak of or look at, just the residual
blotchiness on my legs, he didn't even look at me thoroughly. (I didn't really
mind since there was nothing to see.) He only recommended a good moisturizing
cream/lotion (which I have been using) and sunscreen.
Well, Dr. Burt says go back up to 10mg of prednisone.
Sigh. A friend on Facebook, who also has CIDP that lives in England sent me a
tube of Aloe Ointment and it, has been the best thing to use on my rash. I
can’t believe all the cream and lotions I’ve tried and Aloe works the best!
Thank you so much Annette!
June 11th
I am noticing my eyes feel "filmy" and
"blurry". Is that part of the transplant/chemo reaction? The blurry/fuzzy
eye thing is concerning. I went to an ophthalmologist and had quite a few tests
and it came down to dry eyes. Every other part of my body seems dry so why not
my eyes too. I am to use moisture eye drops several times a day. I usually use
eye drops first thing in the morning so it is not anything foreign to me and I
will just do it more often. Everything else was looking good in my eyes, so
that is a relief!
Some very good observations are that I am experiencing
many less twitches, for sure. I keep count of how many I notice and it has been
6 since transplant! 6!!! That is so cool! No pokes, jabs or stabs at all!
June 30th
I am feeling so much better and better each week. Still
have slight rash and still on prednisone 10mg due to that. I am anxious to see
when I can reduce prednisone that the rash doesn't come back like it did
before. I’m also walking more and more. Having more energy and napping less.
It's only been 2 months since my transplant, so feel that's pretty good.
July 12th
Things are going really well for me! It's been 2 months
and 1 week today since my transplant and I'm feeling GREAT!! Improvements are
happening weekly if not daily! I am still on 10mg of prednisone until the rash
is completely gone! It is no longer actively spreading or itching but I still
can tell it is underlying just beneath the service. Last time I decreased the
prednisone it returned quickly, so I will wait until rash is more subdued
before I start to wean off it. However, that is the only negative part of my
report.
I am moving so much better, faster and easier at this
point, I'm amazed! Last week, I jogged a short distance two times; I've been
riding my stationary bike and walking the block fairly often (when it's not too
hot to walk). The other day, my sister and I were doing a floor treatment of
laying pennies in her archway to seal down as a decorative accent, which
entailed sitting on the floor Indian style and leaning over for a length of
time which was uncomfortable; but I did pretty good, just a bit stiff after
getting up. We were listening to oldies music and when a good tune came on we
actually jitterbugged danced like we used to before my CIDP!!! I was so excited;
I started jumping up and down, which made me more excited that I could do that!!
The
penny floor
I am not experiencing any more twitches, zaps, pokes,
tingles that came with CIDP! Occasionally I am shaky in my hands but I think
that may be from the prednisone more than anything else, so looking forward to
getting rid of that medicine! Balance is something I am still working on as is
strength and endurance, of course. That comes with time but it is certainly
better than it was.
July 13th
YAY!!! Everything in NORMAL range!! Yippee Skippy! (re:
blood work)
Aug 29th
I'm down to 2.5mg pred now since Sunday and there is a
difference in my energy level, for sure. I also was kind of sick over the week
end, some tummy stuff. Not sure what is bringing it on, I'm not eating gluten
or lactose and those are the things that are not my friends. I’ve starting a
diet log so I can track to see if it is a particular food that annoys me. So,
is the lack of energy from the tummy issue or the prednisone? Not sure, but am
only biking at 10min daily now instead of 15min, will try to work up again. But,
when I'm not feeling good in the tummy, I don't ride because that doesn't feel
good either! Catch 22!
A note I sent to Paula:
“Something I'm noticing that is not going away is the
breathing difference. I still am taking deep, anxious breaths often each day.
My lungs just feel different to me than they ever have before transplant. Do
others have this complaint? It's hard to explain, kind of like when you have a
bad cold with a cough and your lungs sort of hurt is how mine feel. I haven't
seen my PCP about this as I am going to a new doctor on Sept 11th since I am
not too confident in the others I had prior to transplant. Do you think I
should get a chest X-ray? Should I see my PCP or would you want to order it for
me since I am sort of between docs here? Then the results would go right to you
up there for my check up in Oct? If so, let me know and I'll tell you where to
fax order. I have noticed this feeling since the time I got home but thought by
now it would be gone. I have taken my Acyclovir 2 times every day since I'm
home and also the Nebupent as prescribed.”
Sept 4th w/ Paula
Paula,
Doing okay, keeping a diary of input and output, LOL.
Nothing major going on, still at 2.5mg of prednisone and feeling a few twitches
and pokes. I’m keeping track of these too. Hoping it turns to nothing more, but
I'll let you know.
Going to stay quiet and just keep an eye on these things.
Sept 6th w/ Paula
Hi Paula,
Just checking in to say I'm doing okay. Tummy has been
better these past few days. But, guess what?
Rash is back a bit, ointment helping already just
frustrated that it is still inside me for some reason! I am still taking
Allegra 2x/daily. It's at a very small area right now (upper right side
breast), with little on other side too (very minor).
Sept 11th w/ Paula - minor inconvenience, ointment keeps
it much less irritating. This is my 3rd week on 2.5mg of prednisone, so Sunday
I may go to every other day at this rate, what do you think about that?
Did you get my phone message about my Dr. visit today?
He's ordering an Albuterol inhaler for me, ask Dr. Burt if okay.
Sept 18th w/ Paula
Just to let you know, I went to have a blood draw
yesterday, so results will be forthcoming.
I also got an inhaler today; my insurance didn't pay
anything for it, first time they've not paid for something, so I guess I can't
complain. I will just be curious on EOB as to why.
Sunday and today I skipped my prednisone, I can
definitely tell a difference in my energy level and stamina these past few
weeks since I've been dropping the dosage. But, it'll all be for the best
eventually. The rash has been behaving, fortunately!
Sept 19th w/ Paula
I'm feeling really energy-less lately. It seems a lot
more than usual. Coming off prednisone, do you think?
Today is especially worse, had to go back to an electric
cart at Sam's Club after I was at Salvation Army. I slept from 11pm last night
until 10am this morning. HHHmmmmm Gave myself a B12 shot Sept 10th.
Sept 25th w/ Paula
Hi Paula,
I’m still tired a lot but better than the other day. I'd
like to stay here for a while and try to adjust at this level.
I'm going to talk to a nutritionist on Friday to see what
I can do to help boost my adrenal production naturally. If she suggests
anything "pill wise" do you want me to check it with you and Dr. Burt
first? I found I cannot (and should not) do the lecithin (soy based) as I took
2 pills and broke out in a horrible rash around my neck and chest. It went away
quickly as soon as I stopped. But, apparently, when one is on thyroid medicine,
one should not take soy products. Didn't know that one! Also biotin made me
sick in my stomach. So, I think talking to a nutritionist might not be a bad
idea. Give her my whole picture of health and medicine regimen and go from
there.
Hair is coming in now, darker, thicker and a bit curly.
Hmmm, this might be fun!
