CIDP-2024

CIDP (2024)

(Chronic Inflammatory Demyelinating Polyneuropathy)

Go back to to 2023.

January 1/2024

Happy New Year.

January 2/2024

Surrey Hospital for Outpatient Physiotherapy.

January 3/2024

Pure Form Physiotherapy for a session.

January 4/2024

Surrey Hospital for Outpatient Physiotherapy.

January 6/2024

Home Health Care.

January 8/2024

Snow day.

Jim Pattison Centre for IVIG (Privigen).

Start with a small bottle and end with a big one.

January 9/2024

Day two of IVIG (Privigen).

I get hone to this; when the removed the iv, they pelled
off a layer of skin. WTF?! Cleaned it up and put some
polysporin on it.

January 10/2024

One day later.

Westcoast Retina Consultants.

January 11/2024

Surrey Hospital for Outpatient Physiotherapy.

January 12/2024

I had to cancel physio and home health care as I wasn't
feeling well, and my foot was getting worse. Spent 3.5 hours
in emergency, where they took x-rays, re-bandaged the wound
with silver, drew blood from both arms, put an iv in my right
arm, and gave me oral and iv antibiotics I will be getting
daily iv therapy for at least 7 days. I also had them look at
my arm. They say that happens all the time and to treat it
like a burn. They dressed it up and gave me a few days worth
of dressing to take home.

This is the dressing used on my arm.

January 13/2024

Langley Hospital for IV Therapy.

January 14/2024

Langley Hospital for IV Therapy; they also re-dressed
my arm and foot.

They changed the dressing on my arm to this.

January 15/2024

Langley Hospital for IV Therapy.

Home Health Care for the left foot.

January 16/2024

Langley Hospital for IV Therapy. The doctor look at my foot;
he arranged for a bone scan, and gave me a prescription for
an oral antibiotic to take (I was supposed to get this in the ER).

Had the bandage changed at the IV clinic; it is scabbing over
nicely, except one spot is still pooling. Also got a prescription
for an oral antibiotic that I was supposed to get when I was in
the ER.

They used a larger size of mepore bandage.

January 17/2024

Langley Hospital for IV Therapy.

January 18/2024

Langley Hospital for IV Therapy.

Healing up nicely.

January 19/2024

Langley Hospital for IV Therapy.

Going to leave the bandage off.

January 20/2024

Home Health Care for the left foot.

Langley Hospital for IV Therapy.

January 21/2024

Langley Hospital for IV Therapy.

January 22/2024

Home Health Care for the left foot.

Langley Hospital for IV Therapy.

LifeLabs for my quarterly diabetes bloodwork.

The scab on my left arm was lifting up, so I cut off as much
as I could. It is healing nicely, and the rest should fall off soon.

January 23/2024

Langley Hospital for IV Therapy, then down to the lab for bloodwork.

Pure Form Physiotherapy for a session.

The last of the blister came off my arm.

January 24/2024

Home Health Care for the left foot. A wound care nurse
removed some dead skin and did a probe test; she was
unable to touch any bone, which is a good sign.

Langley Hospital for IV Therapy.

Surrey Hospital for Outpatient Physiotherapy. We decided
to put off any further sessions until my left foot gets better,
so I will continue with my home physio.

January 25/2024

Langley Hospital for IV Therapy.

Jim Pattison Centre; follow up on MDS.

January 26/2024

Peace Arch Hospital for a bone scan on my left foot; part 1 of 2.

Langley Hospital for IV Therapy. Got another prescription
for oral antibiotics as my previous one ran out.

Peace Arch Hospital for a bone scan on my left foot; part 2 of 2.

After the bone scan, I am radiocative for a week.

January 27/2024

Langley Hospital for IV Therapy.

Home Health Care for the left foot.

January 28/2024

Langley Hospital for IV Therapy.

January 29/2024

Langley Hospital for IV Therapy.

Home Health Care for the left foot.

The left arm almost healed.

January 30/2024

Langley Hospital for IV Therapy. Saw the doctor; was advised
that the bone scan did show signs of infection in my left foot.
So, 6 more weeks of IV, weekly bloodwork, and I assume
another bone scan. The good news is they will put a
picc line in me tomorrow, so I can start doing the IV's at home.

January 31/2024

Langley Hospital for IV Therapy. They put in the picc line, and
showed me how to do the IV myself. The supplies will be delivered
tomorrow, and I can start the home IV process from there.

Picc line installed.

IV removed.

Hospital arm band removed.

Pure Form Physiotherapy for a session.

February 1/2024

My home IV supplies were delivered; 7 day supply.

Came with an easy to assemble cardboard pole with wheels.

Getting ready for home IV # 1.

February 2/2024

Abbotsford Hospital to see a foot wound specialist. Found out
that my pinky toe is fractured and not connected, so it will have
to be amputated, as well as a piece of my foot. I guess this
is where my "amputee" life and "CIDP" life cross paths and
become best friends. Now I wait for a call from the hospital
for the surgery.

Day 2 of doing home IV antibiotics.

February 3/2024

Got a call at 8am. Off to Abbotsford Hospital where I will be for.
the next week or so.

My room. Window view of Hwy 1, fridge, bathtub; not bad.
I am in the pediatric ward, so I'm sure this isn't a normal room.

IV antibiotics as well as IV saline to keep me hydrated;
haven't eaten since 9pm last night, and surgery is supposed
to be at 7pm today.

Surgery never happened, so I got to eat dinner.

February 4/2024

Surgery is done. Took about 15 minutes. They just gave me
a local, so I was awake the whole time. Was a little un-nearving
hearing and feeling the saw cut the bone away, but very minimal
pain; like getting a root canal or tooth pullrd at the dentist. I
have to stay off it for a day or two, to let the bleeding stop (I'm
a bleeder), then they will put suction on it to help the healing
process.

Lunch; not the best meal, but I haven't eaten since 8pm last night.

The road to recovery.

Ughh! Roll of roast beef for dinner. At least the tea and apple
slices were good.

My dinner sunset.

Evening snack.

February 5/2024

Day 3 and my first breakfast; luke warm bread they call toast.

The doctor stopped by to check on me. The bandsge stays on
for at least one more day. I am free to move around, but can't
put any weight on the left foot. So basically I am stuck in bed.

Lunch.

My IV antibiotics; 500mg meropenem.

My IV saline.

Getting my IVIG while I am here, day one of two. Showing
the speed rates; start at 45, go up to 90, then to 180, and the
final rate of 240.

Dinner with my IVIG; ball-of-meatloaf. Good thing for gravy.

My evening snack (half sandwich and milk) arrived at 10:00pm.
I passed and had them put it in my fridge.

February 6/2024

Breakfast.

The doctor was in to look at my foot. The wound looks good,
so they will get the vacuum thingy on it today or tomorrow.

Vacuum thingy time.

Cleaned up and the first bandage in place.

All done. This is called VAC (vacuum-assisted closure).

VAC: infection-free healing, imperative in order to salvage
the limb and prevent further trauma. VAC therapy facilitates
rapid granulation of wounds and reduces bacterial colonization
rates. This method was adopted as a suitable therapy for
treatmentof a patient who suffered from a complex
wound at high-risk of reinfection.

Lunch time.

This will get changed every 2-3 days. Oh, and the machine
farts every 5 minutes or so.

An infectious disease specialist stopped by. He was questioning
why I was getting IV antibiotics every 6 hours. He was going
to confirm that the surgeon got all the infection, and if so, stop
the IV antibiotic and contine with the oral antibiotic.

Dinner, IVIG and a sunset.

Note: yesterday and today's infusions were with Gammagard,
where previous infusions were with Privigen or Gamunex.

Got kicked out of my room; back to baker 3 where I first
checked in. The good thing is my IV pole didn't come with me,
so no more IV antibiotics or saline.

February 7/2024

Breakfast.

The doctor stopped by to check my foot. It looks good, says
I could be discharged in 5 days or so.

PT stopped by to fit me with an offloading post-op shoe and a
2-wheeled walker. I walked to the hall and back, very slowly.
The drop foot makes it challenging to focus your wait on the heal.

Side shot of the shoe.

The nurse was in to change the dressing on my picc line.

Lunch.

Dinner.

February 8/2024

Breakfast.

Wound care was in to change the dressing

Lunch.

Dinner.

February 9/2024

Breakfast.

My surgeon stopped by; he saw pictures taken yesterday of
my foot, and he is happy with the healing progress.

Physio stopped by; showed me a few methods to stretch my
ankle, calf and hamstring, then took me for a walk down to
the end of the hall and back. I was shown a better method of
stepping to work with my drop foot.

Lunch.

Mom came by for a visit (as always), but instead of sitting in
my room, I got in my wheelchair and we went down to the
entrance area to get some sunshine. We also checked out
the cafeteria, where I got a cherry Coke zero and a bag of
Ruffels baked sour cream & onion chips; now that was a
nice treat.

Today I found that my balance is improving, so I was able to
move the commode on/off the toilet (I need the height)
and lock/unlock the front wheels by myself. I was getting
the nurses to do it, so it felt good to do it myself.

Dinner. My room mates mom brought me a spaghettii
dinner so I passed on the hospital tray.

The wound on left arm is almost gone; been 4 weeks.

February 10/2024

Breakfast.

Morning meds, or as I call them, bucket 'o pills.

Washed up and a fresh gown.

Lunch. Passed again as my room mates mom brought me
chicken strips, fries & onion rings. And I had my left over
cherry Coke zero from yesterday.

Nurse changed the VAC on my foot. Still looking good.

The PT team came by; took me for a walk to the end of the
hall and back.

Walked to the common fridge to get one of my yogurts.

Being diabetic, they check my blood sugars 4 times per day.
I keep telling them that my sugars are controlled by diet, and
I never spike or drop. Today, my nurse asked why they are
testing so often, to which I replied, "I don't know, but my fingers
could use a break". She is going to see if they can reduce or
stop the testing.

Dinner.

My brother stopped by for a visit and brought Snuggles.

February 11/2024

Breakfast.

Lunch.

Had mom bring in this mesh bag I had at home to assist me
in moving small items around when needed.

Dinner.

I asked to stop getting the half sandwich & milk that they were
giving me every night for a snack. I asked for a yogurt,
or fruit, or cookies. Instead, I get orange juice, cheese &
3 packs of crackers.

February 12/2024

Breakfast.

The doctor stopped in to check on me. All is good.

PT came by and took me for a walk to the end of the hall and
back. Definately getting a better feel for things, but still
struggle due to the drop foot.

Lunch; no dressing on the caesar salad, no crackers for
the soup, and diced prairs instead of fruit & yogurt. Good
thing I don't have big expectations from the kitchen.

PT came by again and took me down to practice on the stairs.
They had 4 steps, 6" rise, 12" closed tread, & rails on both sides,
(the stairs at the house are 3 steps, 7" rise, 11" open tread, & rails
on both sides) so, I went up and down them two times, making
sure to step higher than the 6" to ensure I could do the stairs
at home. I had no issues.

Dinner.

Evening snack. Same as last night, but cranberry juice instead
of orange juice.

February 13/2024

The doctors were in early. They removed the VAC and were very
surprised. My foot is healing very nicely; the wound is only
3-4mm deep. Because of this, I will be released this afternoon.

Breakfast.

VAC dressing back on.

Picc line removed.

Lunch; my last hospital meal.

My ride outta here.

Back at mom and dad's.

No picture, but had Pizza72 and a can of Coke Zero for dinner.
Sure beats hospital food.

February 14/2024

The tiny scab where the picc line was.

February 16/2024

Home Health Care; changed the VAC dressing.

I have to wear the offloading shoe for at least a few more weeks,
so might as well have a matching black right shoe. I will try and
put a white sock on lefty soon.

February 17/2024

Cleaned and lotioned my foot & put on a sock.

February 18/2024

Home Health Care.

February 20/2024

Lifelabs: bloodwork to monitor the MDS.

February 21/2024

Home Health Care.

February 21/2024

Noticed this on my heal last night.

February 23/2024

Abbotsford Hospital wound care clinic; the foot is healing
nicely, and they want to see me in two months. They looked
at my heal and say it is a pressure wound, probably from the
offloading shoe. I now have to find a podiatrist to follow up
with on both issues.

Home Health Care.

February 26/2024

Home Health Care.

February 28/2024

Home Health Care.

February 29/2024

Pure Form Physiotherapy for a session.

March 1/2024

Home Health Care.

My heal.

My foot.

Came home to a visitor; she is staying for the weekend.

Aurora Foot & Ankle Clinic; podiatrist. My surgeon told me to see
a podiatrist. For $140, the podiatrist advised that the offloading shoe
is probably doing me no good and to wear my regular shoe, then said
I need to see a pedorthist.

Podiatrist: A doctor that specializes in treating foot and ankle problems.
Pedorthist: A footwear specialist that creates or modifies shoes, socks, and orthotics that aid in management and recovery from various foot problems.

When I got home I tried to put my largest fitting shoe on, and it
didn't fit due to the VAC and bandsging on my heal.

Time to relax.

March 2/2024

A new day of relaxing.

March 3/2024

Here we go again.

March 4/2024

Home Health Care; stitches removed

Jim Pattison Centre for IVIG, day 1 of 2 (Gamunex).

Paris everyBODY; pedorthist, phone call consultation.

March 5/2024

Jim Pattison Centre for IVIG, day 2 of 2 (Gamunex).

My post IVIG treat; been craving one for like nine months.

IV tape removed with no damage to my skin.

March 6/2024

Home Health Care.

March 7/2024

Pure Form Physiotherapy for a session.

Paris everyBODY; pedorthist. He replaced the liner in my offloading
shoe with one with more cushion, and tapered the back of the heal
down to offload that area. I was happy with that.

March 8/2024

Home Health Care; my foot.

My heal.

Waiting for new bandaging.

March 11/2024

Home Health Care.

March 13/2024

Home Health Care.

March 14/2024

Pure Form Physiotherapy for a session.

Dentist for a long overdue cleaning.

March 15/2024

Home Health Care; heal.

Foot.

March 18/2024

Home Health Care.

March 20/2024

Home Health Care.

March 21/2024

Pure Form Physiotherapy for a session.

March 22/2024

Home Health Care.

March 25/2024

Home Health Care.

March 26/2024

West Coast Retina Consultants.

March 27/2024

Home Health Care; the VAC should be coming off next visit.

Pure Form Physiotherapy for a session.

March 29/2024

The VAC and its case; goodbye.

Home Health Care; no more VAC.

April 1/2024

Home Health Care.

Jim Pattison Centre for IVIG, day 1 of 2 (Gamunex).

April 2/2024

Jim Pattison Centre for IVIG, day 2 of 2 (Gamunex).

Todays post IVIG treat.

April 3/2024

Home Health Care.

Pure Form Physiotherapy for a session.

April 5/2024

Home Health Care; my foot.

My heal.

They changed my schedule from three times per week to
two times per week.

April 8/2024

Home Health Care.

April 9/2024

Pure Form Physiotherapy for a session.

April 11/2024

Lifelabs; diabetes & MDS bloodwork.

Home Health Care; my foot.

My heal; the scab is 90% off.

April 13/2024

Trying on my regular shoe.

The shoe was going well, so added the AFO.

April 14/2024

Switched to the white kicks.

April 15/2024

Home Health Care; my foot.

My heal; the last bit of scabbing fell off.

For the past few days, I have been walking around the house
without the off-loading shoe and with the 4-wheeled walker.

I still use the wheelchair when I go to appointments, but I think
I will get back to using the 4-wheeled walker when there isn't
a lot of walking involved.

As much as I hated wearing the off-loading shoe, I figured it
would help me with my balance. After not wearing it for the
past few days, I can say that it has helped.

Did a few laps around the bedroom using my cane.

The AFO goes around the shoe lace via a velcro strap, and
pulls up and stretches the lace. To minimize the stretching, I
cut the velcro strap so it would go around the lowest part of
the lace, which goes through a strap that is stitched to the shoe.

April 16/2024

Pure Form Physiotherapy for a session; used the walker.

April 18/2024

Home Health Care, with my walker.

My heal.

My foot.

Came out to this; did they even try to park properly? I was
parked to the left, in the disabled parking spot.

Hodgson Orthopetic; follow up on left foot orthotic. My
orthotist is happy with how things are healing and with
what I am doing. For now, we wait for my follow up with
the surgeon tomorrow, and go from there.

April 19/2024

Abbotsford Hospital wound care clinic; follow up on left
foot. My surgeon is happy with how the amputated area
and heal are healing, so he said his job is done. I will have
to keep an eye on things, and continue with Home Health
Care, but I can continue to walk more and get back
to doing my physiotherapy at Surrey Hospital. Woo-hoo!

April 20/2024

My freaky foot.

Due to my missing body parts and CIDP, here are the devices I need
to stand and walk; sneakers, prosthesis, AFO, and 4-wheeled walker.

My home PT has been going well the past week, mostly
exercises I can do sitting and laying. Today I started more
standing excersises, as well as the other ones. I almost
feel like (balance & walking) I was before the left foot
amputation, so that is good.

Spent 30 minutes or so in the garage puttering on my car
then drove it around the block to get a feel for driving;
been almost 1 year. I will be taking action to get my license
back in the next few weeks.

April 22/2024

Home Health Care; my foot. They are just putting a bandage
on to protect the area.

My heal. Same as my foot, just a bandage. No more padding.

Both areas were still completely dry, so I can continue with,
and slowly increase my standing/walking exercises.

Made a call and got the ball rolling on project "Get My
License Back". Stay tuned.

April 23/2024

Surrey Hospital Physio, phone call follow-up. I told my
therapist all the good news about how I am doing, and she
was happy to hear it. The plan is to give it a few more weeks,
where I will continue doing my home PT, then get in to see
her and get back to outpatient PT.

West Coast Retina Consultants.

When I got home, I went up the garage stairs leading with my
left (real) leg. I have been using my right (prosthetic) leg, as
it is stronger, so good to see lefty is building some strength
back. Lefty was my strong leg before CIDP.

As an amputee, the general rule is to lead with your real leg
when going up stairs, and lead with your prosthetic leg when
going down stairs. This is how I did stairs before CIDP.

I sat in two different chairs in the house; their design and height
prevented me from sitting in them. Now that I am regaining
strength, they are now on my growing list of things I can sit
on. I haven't sat in these chairs since getting CIDP.

April 24/2024

Pure Form Physiotherapy for a session.

My current home PT routine.

April 25/2024

Home Health Care; my foot.

My heal; no more bandage.

They put a bandage on my foot, but only to protect the scab
from getting torn off; I can take it off if I want. And I don't
need a bandage on my heal at all.

I am officially discharged from Home Health Care.

April 27/2024

Mom went to visit a friend, so she dropped me off at my place.
Spent about an hour there, put a few things away, moved
some things, walked for minutes on my treadmill, and layed
on my bed four times.

April 28/2024

Over the past week, one of my goals was to work my way up
to 1000 steps per day. I will continue with that goal over the
next week or so and monitor my foot. If it does ok, then I
will bump up the steps.

April 29/2024

Jim Pattison Centre for IVIG, day 1 of 2 (Gamunex).

Was doing some walking in the house, stopped to tighten
my AFO, and snap! She broke. Amazon special that lasted
about 3 months of use. The good thing is the velcro failed
a few weeks ago, and when I reached out to the seller, they
gave me a full refund. Then when I was at Hodgson a few
days later, they fixed the velcro for me, so I got some extra
use out of it.

My foot; changed the bandage. Also, been washing and
putting lotion on each night since not needing the bandage
on the heal.

April 30/2024

Jim Pattison Centre for IVIG, day 2 of 2 (Gamunex).

Today's post IVIG treat.

May 1/2024

Goal accomplished; minimum of 1000 steps per day.

Pure Form Physiotherapy for a session.

May 2/2024

Today marks the one year anniversary of me waking up in the
morning, not be able to move, taking an ambulance ride to
the ER, and being stuck in a hospital for five months. It has
been a long and difficult 365 days, but I went from being
bed ridden and needing a ceiling lift to move me, to being
able to stand, walk with a walker and do most basic things
in life. I have a long way to go in my rehabilitation, building
my strength, balance and walking, but I will keep at my
home physiotherapy, outpatient physiotherapy, and of course
my monthly IVIG sessions.

Me & CIDP Fun Facts

Motor Vehicles; got a temporary license for the on road
part of the drivers test. Didn't get an "L".

My new AFO arrived from Amazon.

Fits and works.

May 3/2024

Foot washed, lotioned and drying in the air.

The healing continues nicely.

Walking around the house with just my cane; 400 steps and counting.

The new AFO is easy to unhook so I can remove my shoe and
let lefty have a breath of fresh air.

Ended the day with 1122 steps without the walker.

May 4/2024

Today's goal is to not use the walker, at all, in the house.

Put my orthotic back in my left shoe; will help level my foot
out. Also, the height of my prosthesis was set with wearing
the orthotic, so it keeps my hips level.

Grabbed these spring o-rings off Amazon to make the AFO
work a little better.

They will make for a better & easier hook point for the AFO.

Perfect fit.

My new walking team; sneakers, AFO & a cane.

Goal met; used only the cane to walk in the house.

May 6/2024

Stepped onto the patio for the first time in over a year. Felt good
to sit outside, with a cool breeze blowing, and the resident
guard dog and guard turtle keeping me company.

JR Rehab Services, part 1 of drivers test, in class. Did cognitive
and physical testing, as well as a simulated driving reaction
test. I passed with flying colours. Now to wait 2 1/2 weeks to
take the road test.

May 8/2024

Pure Form Physiotherapy for a session.

May 9/2024

Wash and bandage change day.

Cut another piece of the scabbing off on the heal.

May 10/2024

Mom took me to my place for a few hours. We started
cleaning up my kitchen (getting rid of anything that was
old and expired), and I spent 5 minutes on my treadmill.

I have one small step to get into my place, which I have
easily done with the walker. Today I went up and down
with just my cane.

May 11/2024

Dad took me out to run a few errands, then dropped me off
at Tim Hortons where I had lunch with a couple of friends.
Was good to get out of the house and do some "normal"
life activities.

My normal routine when going out, has been to wheel to
the passenger door, get in the car, and let my driver put
the walker in the back of the car. For the past few days, I
have wheeled to the back of the car, then using the car for
balance, walk to the passenger door and get in. This
afternoon I also put the walker in the car myself.

And lastly, at one of todays stops, I stepped up on the
sidewalk, then down off the sidewalk, with the walker.

Bonus: Over the past few days, while walking inside the
house, I would barely use the cane; it would touch the
ground, but I would put mininal force on it. Today, while
walking in the house, I did 2 laps without the cane
touching the ground. Then after a break did 2 more. Then
after another break, did 2 more. That's (minimum) 600
steps without the cane for assistance.

May 12/2024