Monday, September 30, 2013

What's up Doc??

September 30, 2013:

Last week I had a visit with my neurologist at The Ohio State University Medical Center. This would be the first time we have seen each other in almost a year. I was quite nervous for this visit. She has been my neurologist since I was 12 years-old. We have had our ups and downs, but I am so thankful that she was able to diagnose rather quickly. I read so many horror stories from individuals who bounced from neurologist to neurologist with no answers.

The morning of my appointment, I gathered up my discharge summary and my trusty cane and out the door I went. Ann took the day off work since I still need a chauffeur for long trips. As Ann and I navigated our way to the big city of Columbus, Ohio it was obvious that we were both a little nervous. Ann and I had a rather quiet ride. She was busy chewing on her finger nails and I was lost in thought of how my doctor might react. Before I knew it we were pulling into the parking lot.

After about a 30 minute wait it was finally time to see my neurologist. I must say that while I was sitting in the room my stomach was full of butterflies. It felt like an eternity. Finally the door swung open and there she was. She always barges into the room with a huge smile which is followed by the "How are things going." Before I could really answer she followed up with, "So did you go to Chicago?" Once those pleasantries were out of the way it was down to business. So she put me through the usual examination.

Her first command was for me to take off my shoes and walk across the room. I was all too happy to oblige her. I even did it without my cane. Watching me walk, she said "Wow!" Then she had me sit on the examination table so we could begin the neurological evaluation. I followed her finger, puffed out my cheeks, closed my eyes while she poked and prodded me. All the time while she was performing the examination she was checking the results against my prior visit with the nurse practitioner in March. At the conclusion of the exam she state that I had made a "marked improvement" and that she would share my experience with her colleagues.

The day I was discharged from Northwestern, one of Dr. Burt's patients referred to us as "trailblazers".  I could not agree with her more. As days fly by and my health continues to improve I feel it is important for me to share these experiences. It is our progress that will bring light to the positive effects of the stem cell transplant for autoimmune diseases. So with each passing day I am pleased to be part of something so powerful.

Monday, September 23, 2013

It's Time to Kick off the Training Wheels

September 23, 2013:

This past weekend Ann was giving me grief about wanting to go to Wal-Mart. I know it shames me to say that I actually was excited about going into that retail abyss. Apparently, Ann did not share in my enthusiasm. Ann has always been my moral compass. When I come up with all my hair-brained ideas she is always there to ensure I have weighed all the pros and cons. So here we are again debating back and forth on whether going to Wal-Mart is a good idea. Off to Wal-Mart we go.

As we pulled into our parking spot at Wal-Mart, Ann turned off the of the van and gave one final plea, "Are you sure this is a good idea?" Running out of ammunition I turn to her and say, "You got to take the training wheels off sometime." Then I opened the van door and swiftly exited the vehicle before I was hit with her keys.

I would like to report that, with the assistance of my roller walker, I bobbed and weaved my way through the aisles of Wal-Mart like a seasoned professional. The most disappointing part of our trip was the fact the what we wanted was cheaper on-line. Had my attention not been diverted by the faint echo of coughs and sneezes, I could have made a real fool of myself in that place. I figured since Ann wasn't real keen on our trip I doubt she would post the required bail money. 

All kidding aside, it was a little daunting to go to such a public place. I think I am becoming conditioned to use hand sanitizer any time a person coughs or sneezes within an earshot. However, I also cannot stay hid away like I had initially planned. It is important for my sanity to get out and socialize with friends and family. All of my blood work continues to be in the normal range, and my doctors assure me it is fine to go places. They say just avoid large crowds and sick people.

This past week I have not made any crazy breakthroughs. I just continue to get stronger and stronger. A month ago I would never dreamed I could walk through two different stores and be able to get out of bed the next day. Plus, I have not had anymore dizzy spells or falls. I have developed a new symptom (probably more like sensation). Early in the morning or at the end of the day I have started feeling "bee stings". It feels like I am being stung by dozens of bees all at one time and in different areas of my body. I will bring this to the attention of Dr. Burt's staff, but I feel it is my nerves regenerating. It is simply amazing what a change in mindset can do. Last year if I would have experienced these stings I would have freaked out.  Now I see them as a blessing in disguise.  Taking it one day at a time.  I hope to keep my training wheels off at least another week. 

Until next week, keep peddling.

Monday, September 16, 2013

Too Good to be True

September 16, 2013:

While researching Dr. Burt and the stem cell transplant procedure I kept reading all these success stories. I heard stories of individuals who suffered from CIDP, and other auto-immune diseases, regaining their lives. Today marks my 60th day post transplant and I am honored to be telling my success story.

With each passing day I become more and more thankful that I was able to under the stem cell transplant in Chicago. Even after reading many success stories I am still shocked at the results I am having. I never would have thought that in two months I would be able to walk, climb stairs, or drive. Another promising note is that all of my blood work has been coming back excellent and my sprained foot is healing nicely.

There have been so many people that have supported me and my family these past several months. As a way to honor their support I have committed to pay it forward to others in need. The first way that I plan to pay it forward is by starting a nonprofit organization. The paperwork for the nonprofit is underway and I will soon begin setting up the organizational structure. I feel as though I should already had it set up, but then again it has only been two months. All good things come in due time.

The other venture I am working on is an annual blood drive. For those undergoing a stem cell transplant, it is almost certain that a red blood cell, or platelet, transfusion will be needed. During my transplant I received 3 units of red blood cells. The other patients I met needed at least one platelet transfusion. I was told by Amy Morgan, Dr. Burt's NP, that there have only been about 3 people in the Northwestern study to go through the stem cell process without a blood transfusion. Therefore, I feel it is important for those who are able to give blood to do so. More details about the blood drive will becoming once I have a firm time and location.

As day +60 comes to an end, I do not want to think where I would be had I not opted to pursue a stem cell transplant. Up to this point, I have noticed that I am able to walk through my house without any assistance. Also, I have noticed my stride is becoming longer and I am able to walk longer distances as long as I have my cane or walker. I am slowly regaining my endurance. Stairs are doable as long as I take my time and use the rail. Transitioning from sitting to standing is getting much easier. I have been driving short distances in my truck. Oh how I missed driving. It has been over a year since I sat behind the wheel. That has been one of the most gratifying feelings of the past week.

Please stayed tuned for more information about my nonprofit, Bryan's H.O.P.E, and the upcoming blood drive. I hope you have a great week.

Monday, September 9, 2013

This is for Shirley.

September 9, 2013:

This week was not without heartache. Heaven gained another angel last week when a member of my family passed away. I had not seen Aunt Shirley in many years, but we had reconnected through Facebook. Shirley was a devote Christian woman who always put everyone's needs ahead of her own. She had her own health problems, and never did I hear her complain. She read my blog daily and relished in my recovery. Shirley made sure that my name was on every prayer list she could think of. I know that my recovery has been so successful because of the prayers the Shirley made sure was said I my behalf. Thank you Shirley.

Time goes by so fast. Last week I talked about how I had been procrastinating. Tomorrow is not guaranteed. All we have is this moment, right here, and right now. It is important to remember this. If I were gone tomorrow, how would I want to be remembered? I would want to be remembered how Shirley was remembered. It is without a doubt she is remembered as a loving, caring, and a unselfish woman who walked with God. Goodbye Shirley, you were a shining star in what often seems like a dark world.

The question is, "How do you want to be remember?"

Monday, September 2, 2013

On the Move

September 2, 2013:

No longer can I sit cooped up in this house. I need to get out and start living again. In doing so, I am still staying clear of large crowds and sick individuals. It just feels nice to go outside and sit in our swing and watch my dogs play in the yard.

Over the past week I have fixed a few issues I was having with my truck (which could not have been done without the help of my brother-in-law). I also went with one of my friends to watch some high school football on Friday. There is something about a Friday night watching high school football that is soothing to my soul. Then Sunday I watched my oldest daughter cheer for the 5th and 6th grade football team.

As my foot has began to heal from my fall, I am beginning to notice that I am doing things without thinking about it. For example, on Sunday we were returning from watching my daughter cheer and I had to use the bathroom extremely bad. When we pulled into the driveway, I hopped out of the car and bounced up the three steps on our porch on my way to the restroom. I was halfway up the steps before it truly hit me that I was actually walking effortlessly.

I am also noticing that fatigue seems to becoming less of an issue. I know that this is asking for trouble, but I have been more active this week and I am yet to experience one of my "spells". This is not to say that I still do not fatigue easily. When I leave the house I am still using my roller walker because it doubles as a seat for me to rest on when I need to.  It is just that it is not taking days to recover from a busy day. Previously, going to the doctor for a blood draw would have sapped most of my energy. My recovery seems to be more normal (whatever normal is). Each day I am waking up feeling a little more rested and my energy stays with me a little longer.

Each week I am amazed at the results I am seeing. For over a month and a half I have not been on any medications to treat my CIDP. My body is continuing to respond to the stem cell transplant and I am getting stronger every day. I cannot wait to see what this next week has in store for me. However, I do know that I need to quit procrastinating and get my butt in gear working on organizing my foundation. “You cannot escape the responsibility of tomorrow by evading it today” - Abraham Lincoln.