Monday, August 26, 2013

Another Week in the Books

August 26, 2013:

 I cannot believe that my stem cell transplant was only a little over a month ago. As I sit here writing this post it seems like it happened years ago. I could not be more pleased with the results I am seeing. I am out of the wheelchair and I am motoring a long with my walker, despite my injured foot. I often wonder how I became so lucky to have found Dr. Burt and his research study. I am sure that God had a hand in it and I am thankful everyday.

Today, I thought it would be a good idea to share with everyone some of the functions that I have regained since my transplant. Here they are:
  • I am able to get in and out of a chair.
  • I am able to button and zip my clothing.
  • I am able to walk with the assistance of a walker/cane (NO MORE WHEELCHAIR).
  • I am able to put on and tie my shoes.
  • I am able to get up off the floor. (This comes in handy when I fall).
  • I am able to walk up stairs. (Just a few).
  • I am sleeping better.
  • I can get in and out of the shower.
  • I am able to type the blogs.
I know there are many more subtle improvements that I have made, but these are the major ones I am proud of.

Something I would like to share with future stem cell transplant patients is to be prepared for a let down after you return home. While in Chicago your life is structured. You are basically told when and where to be and what you need to do. Then when you return home and you lose that routine it can be a little disheartening. For me, I am so fearful of getting sick that I have chosen to isolate myself from the outside world. Meanwhile, I have a friend that felt going out, but staying away from crowds, was best for their recovery. That is the beauty of it all; so many others have gone through this process that it is important to draw from their experiences. You can take bits and pieces of what has worked for others and develop your own routine.

This past month I have experienced my share of highs and lows. I am so excited for the improvements I am seeing, but I am impatient. I want to have years of damage repaired in a month. I know it doesn't work that way. Honestly, hurting my foot has been the best thing for my recovery. Now that I have been forced to slow down I have no longer experienced any of the "spells" I was having last week. Once again I am amazed at the signs God gives us when we open our eyes.

This is in February of 2013. You can see I had to use a wheelchair.

Here I am walking with a cane. This was the day we returned from Chicago.

Monday, August 19, 2013

Oops....I Overdid It Again

August 19, 2013:

This past week I have discovered that my body and mind are not in sync yet. My rehab workouts consisted of walking on the treadmill for 5 minutes, working on the stepper for 5 minutes, and then concluded with my upperbody band exercises. So, I am putting in about 20 minutes of work each day. In my mind this is nothing more than about 20 minutes of exercise. However, my body was trying to tell me that this was too much.

Over the past week I had been experiencing what I would call "spells". These spells consist of my arms and legs trembling uncontrollably and my energy instantly being sucked from my body. The spells were generally occurring in the evenings and as long as I could sit down immediately the spell would quickly pass. Once the spell passed I felt fine. Therefore, I did not put too much thought into these spells because I knew how to cope with them. I was wrong.

Last Thursday, while Ann and the girls were in bed, I had one of these spells while on my way to the bathroom. I was caught in no-man's land. I could not find a place to sit down and I only had my cane. The result of this spell left me in a crumpled pile on the bathroom floor. The pain instantly shot through my right foot and up my shin. As I laid there, waiting for Ann to once again come to my rescue, I was sure something was broken.

The next day my foot was bruised, swollen, and painful to walk on. It was off to get an x-ray for me. The good news was the x-ray came back negative. Dodged a bullet there. This was a wake up call for me to pay more attention to what my body is telling me. With this foot injury, I have been forced to cut back on my workouts. In return, I have not have a single spell until today.

Today I was out and about getting my blood draw and picking up prescriptions. When I returned from running around I went directly to my chair and remained there until dinner. As I was on my way to the kitchen table I was hit with another spell. The worst part is not knowing when one of these spells is going to occur.

I have spoken with the nurses in Chicago and they feel that I am just overdoing it. I have put the cane on the shelf and gone back to the walker. My thought process is that I can conserve some of my energy by using a walker as opposed to using my cane. The walker I have has a seat on it; so no matter where I am I will always be able to just sit down when I feel a spell coming on. I also need to scale back my workouts and make sure I am getting proper rest in between workouts.

It seems like so long ago, but I am just over 1 month post transplant. I am very pleased with the results I am seeing and feeling. The hardest part is that my mind thinks that my body should being doing things it is not quite ready for. This foot injury is only a minor setback. I will continue to push the limits. Once I find the limits, I will then back off a little.

I know I push myself too hard. I know I bring a lot of misery upon myself because I push so hard. Honestly, this is all I know. I have had to push through pain and fatigue my entire life. It is going to take me a little while to adjust. I just hope that as I am learning my limits I do not break anything major.

Thanks again for checking in. More to come next week.

Monday, August 12, 2013

Cabin Fever

August 12, 2013:

This past week has been a little bit of a struggle. Last week, Amy called to report that most of my blood work had come back normal; however, my CMV was starting to turn positive. She assured me this was nothing to worry about. However, she needed to switch me to a stronger antiviral medication. So, what is CMV?

According to the Mayo Clinic website, Cytomegalovirus (CMV) is a common virus that can infect almost anyone. Most people don't know they have CMV because it rarely causes symptoms. However, if you're pregnant or have a weakened immune system, CMV is cause for concern.

Once infected with CMV, your body retains the virus for life. However, CMV usually remains dormant if you're healthy. CMV spreads through body fluids, such as blood, saliva, urine, semen and breast milk. People with weak immune systems have a greater risk of becoming ill from CMV. If you're pregnant and develop an active infection, you can pass the virus to your baby. There's no cure for CMV, but drugs can help treat newborns and people with weak immune systems.

CMV can resemble symptoms similar to mononucleosis. This virus can also cause problems with the liver, intestines, nervous system (encephalitis), and lungs (pneumonitis).

I am looking forward to getting my blood work by this week to see if the new antiviral medication did the trick. I have a lot of faith in the doctors at Northwestern, so I am certain that everything will be fine.

Besides dealing with this CMV thing, I am battling boredom. The walls of my house are beginning to close in on me and my mood has soured. I know that this may be a natural reaction to being secluded, but that does not mean I have to accept it. Physically I am feeling better and want to do so many things that I am often becoming frustrated. In Chicago, I was surrounded by people who understood and could relate to my struggles. They had become a support system to me. Sharing stories with my transplant buddies was so soothing to my soul. Now that we are home, I feel like a little piece of me is missing. I told Ann that I had felt like I had lost my purpose. I know that is not true, but there were a couple of days that I did feel that way. I thrive on being active and helping others. That is why I loved coaching. Now, that ship has sailed and I am on to my next phase of life.

As I wrote about in an earlier blog, Ann and I are starting a foundation, Bryan's H.O.P.E. The purpose of the foundation is to bring CIDP and Stem Cell Awareness while providing hope and support to those who suffer from chronic illnesses in our community. Well, I just jumped right in and got the ball rolling. I have registered my foundation with the State of Ohio and received my Employer Identification Number. The fun now begins of setting up the organizational structure and applying for tax exempt status from the IRS. This task should halt some of the boredom. I am operating under the premise that I am just going to jump in with both feet and I will either sink or swim.

I just need to keep reminding myself that the short-term sacrifice is worth the long-term success. That is not an easy task in today's world. Delayed gratification is slowly becoming a dirty word. How many of you have threatened to throw your computer out the window because it was taking more than 30 seconds to load a page? I know I am guilty of that. That is why after a few negative days I have decided to try and find a positive spin. This week has truly been about reminding me about the importance of delayed gratification. Remember a garden is not harvested the day after it is planted.

Monday, August 5, 2013

It's Good to be Home

August 5, 2013:

Last Thursday, we said goodbye to Chicago. Over the course of the 1 hour flight I could feel my excitement growing. It had been weeks since I had hugged my daughters. Finally, we landed in Columbus and as we proceeded to baggage claim we were greeted by two little girls jumping up and down waving their Welcome Home signs.

When we arrived at our house we were greeted by many of our family and friends. A member of our church said a wonderful prayer and then balloons were set free. This gesture truly touched my heart.




Last fall when I had decided to pursue the stem cell transplant I told Ann and my Mom that I wanted to do this on my own. I did not want to feel indebted to anyone.  Funny how God gives us a kick in the pants when we need. There is no way that I could have gone through this process if it was not for all the people who helped us along the way. My family has truly been blessed.

Over the next several months I will be getting weekly blood draws to continue to monitor my blood counts. Everyday I wake up I cannot believe that I am able to walk. It has been simply amazing. I am now able to walk up the 15 steps it takes for me to get from our first floor to our second floor. For the first time in over 20 years I am no longer taking medicines for my CIDP and I am continuing to improve. What a great feeling!

On another note, I mailed my packet into the State of Ohio to get the ball rolling for my foundation. I should hear back from them by next week. I am looking forward to the beginning of a new chapter in my life. I understand the power of hope and knowing the power that this 4 letter word carries drives my passion to help others. Below is a picture of the gift Ann got me.

From here on out, I plan to update the blog on Monday evenings.  So, more to come next week.  Have a good one!