1 year Stemmie Day

Yesterday was my 1 year Birthday/Stemmie Day. Just want to thank my family and friends who helped me get my Stem Cell Transplant to get rid of my MS/CIDP. I will always be grateful to you. This a new treatment to treat autoimmune diseases, it the same treatment they use for some cancers. HSCT is like Bone Marrow Transplant, but you use your own stem cells to restart your immune system. Some knew how bad I was, let's just say a wheelchair was right around the corner for me.

Thanks to Dr. Burt, I see a future again

One Year Checkup

Well I came back from my 1 year check up last.
First I met with Dr. Burt,  and as I was walking in to the exam room (yes I said WALKING), I walked past Dr. Burt. When he came in the room he asked "what's new". I said I'm walking. He said "yes you are". He was very happy with my progress.
The next day was labs the the tube or MRI. I was stuffed in that tube for 3 1/2 hours. Day 3 was the EMG. Bad thing was it really hurt, good thing it really hurt. I felt that I had more feeling than 6 months ago. The doctor giving the EMG said it look better than last time.  The last day was with the neurologist Dr. Allen,  he told me the lesions I had during the evaluation were gone or almost gone.
So all in all, it was a good visit.

Today Paula called me to go over my visit.  She said Dr. Burt was very happy with my progression, the she said

MY CIDP/MS IS IN REMISSION!!!

Back to the pool

Well they had me back in the rehab pool Friday.  During my OT session, the second part of it, she decided to use the pool for a half hour since it was unused. I was scheduled to be in the pool for PT. So I was in the pool for a total of 1.5hrs.
The bottom of the pool is a treadmill.  So I walked forward, backwards, and side to side. Also did some stair stepping,  then worked on my balance.  Needless to say, I gave my legs a workout.
The cool thing about the pool is, the bottom raises up and down.  Makes it easy to get in and out. Unless your legs aren't use to working out that long. So as the bottom raises and gravity returns.  Standing there holding on to the rail, you feel you weight return, and we'll,  my right leg was tired and didn't want to work and I had to sit down.
Thought I just need to rest a bit,  but that didn't work, still kept giving out on me.
When we work my legs I alway joke that I needed a wheelchair,  but this time I needed one.
After getting dressed, they wheeled me out to the car and got me in. Once at home I had to bust out the walker to get me in the house. It took about 2 hrs to regain my strength back. To my surprise, I wasn't a sore as I thought I was going to be. Go back for more Monday.

AFO Braces

Today was a good day at rehab. Today I walked without my AFO Braces and no walking stick!
Just me and no help from anything, well maybe a wall here and there.
First to laps where barefooted,  then with my shoes.
Stronger today than yesterday. I will not let this beat me.

Rehab Pool

PT was different today, today they had me in the rehab pool.
I was a bit worried how I was going to get in and out of it. Well it was easy, she click a button and up came the pool floor. Then I held on to the hand rail, then click of a button, down went the floor.
The other cool thing about this pool, the bottom of the pool is a treadmill. I got to practice walking normal without the threat of falling. Then working with water weights to strengthen my core. Diffently going to schedule more of those sessions.
Now that I can be back in the sun, man I need a tan.

Its been 6 months!

It has been 6 months since my HSCT. Each day I feel stronger than the day before. I am so glad I decided I did this treatment for my CIDP/MS. I am so blessed to have family and friends who have supported and been there for me. I have come a long way, and a long way to go, but with all the thoughts and prayers behind me I will be there in no time.

6 month followup

I went to Chicago for my 6 month followup, and the Doctors were happy with the improvements they saw. It was a good visit.
With more PT and OT, I'll be back on my feet in no time.

3 Months

Well its been 3 months since my HSCT.
Most all of the chemo fog has lifted, and the cloudiness in my eyes has gone.
Been doing PT/OT for 2 months, and it's going great. The muscles in my hands are coming back. They put me in ankle braces to strenghthen my ankles and feet. With these braces it helps my drop foot, now it doesn't sound like I have clown shoes on. Didn't know how weak my legs were until I got these braces. I have faith that I will be standing and walking without ANY type of help in no time. Spero Rehab does great work.

First week down

Finished my first week of rehab last week at Spero Rehab. On Monday I did a review to check my progress, they were happy such a improvement. I stll have a lot of work ahead. If it aint hurting, it aint working lol. Great staff they, they push me and don't let me get away with anything. What I need!

PT Time

Been home for 3 weeks doing the PT exercises physical therapist in Chicago had me. After waiting, I finally got into physical therapy Wednesday.
Legs and ankles are still weak, so I can't wait to get started.  Gonig to be a long process, but I'm up for it.

Time To Go HOME

After being discharged only on thing left to do, labs on Monday.  On Tuesday we flew out of Midway back to HOUSTON.  Flying back went pretty smooth,  except for the TSA fell up.  Was wearing my skull cap, and they made me remove it,  and they didn't even check it.
After 3 hour flight, we finally made it home, and it's tine for dinner, WHATABUGER TIME!!!
How I missed my bed...

Day +7

Imunne system wipped out still, been getting platelets while I wait for my reboot to kick in. Today I had to receive some hemoglobin also today.  Dr Burt says I'm doing great.

Happy Birthday

October 16 2013 is my new birthday.  This the day where they give my cells back to begin the process of  rebooting my immune system.

6 Days of Chemo

Day 1 went pretty good, till they up the rate of my chemo. Felt like my head was on fire. They slowed down the rate and gave me benadryland that made it better.
Day 2 went pretty well, minus all the peeing.

Day 4 my immune system started dropping and I was feeling wiped out and weak. Chemo messing with my eyes. Nothing tasted good and nothing sounds good to eat. Tried the chef's lunch special, it wasn't bad, till the diarrhea up at midnight. nothing imodium couldn't fix.

Days 5 and 6 lazy days aka benadryl days.

PICC

Got my PICC put in today, and will be admitted tomorrow morning for the start of my chemotherapy.

Hey Moe

My new dew

Plasma Day 2/2

This IS my last Plasma Exchange after of 4 years of them!!

Loooooooong Day

My day at the hospital started at 7 a.m. Monday to get my catheter placed in. The procedure took about an hour and a half, relatively quick and painless. Then I had to go to the blood center for a blood lad to see how many cells they could havest. Since I couldn't eat or drink after midnight,  I got a break while waiting for the results,  for breakfast and a drink. I got hooked up around 11ish for harvest. The harvest finished up around 2:15 p.m.. I had to keep my catheter until I get my platelet and stem cell count back. They told me it would take 2 hours. 6 o'clock rolls around and I finally got my results,  so I finally got my catheter out, then they made wait til 6:30 befor I could go.  We got back to the hotel at 7:15 and ate then past out..

They only needed 3 million stem cells, they harvested 9.2 million stem cells from me. I guess it was worth the wait.

One Month Down!

We've been here for almost a month. Did my labs today, shots going ok. Almost time for the fun stuff!

Day After

This is me for 2 days after mobilization.