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.


  1. You are doing great! Better to be bored than sick. Uncle Mark and I are so proud of you and your family! We hope to see you this Fall.

    1. Hope to see you guys too. Maybe Mark will let me get a picture taken with the big buck he gets.

  2. I went through the same feeling and it actually lasted a couple of months. People don't realize it takes months to recover physically and mentally. Personally, the mental side was worse. I knew how to battle the physical side but not the mental side. I'm happy to report once I found a new purpose things are returning to a more normal state. Hang in there, patience is one of those things that is hard to do! Mary B.

    1. The mental side is the hardest part. Like you said, I know what I need to do physically. I am glad you found your purpose. Thanks for the encouragement.