Update from the Clinic

I am relaunching the blog with a series of posts originally written in 2014.  You can scroll to the bottom to start reading with the first post.

August 8, 2014

Learning to walk the second time is harder than learning to walk the first time.  There’s an observation I never expected to make.  I want to give you an update on the therapy progress to let you know how I am doing and how to pray for me.

The folks here have given us various numbers for how much muscle mass a person loses each day they are incapacitated.  It’s a really big number and if I hadn’t experienced it, I wouldn’t believe it.  Before this began, I was not “athletic” but I was active and could do all that I needed to do.  After nearly a week sedated and another couple weeks immobile, I had little muscle left.  It was deceptive, because during that time my body collected fluid.  So, for example, my calves were larger than before but it was all water weight.  When we finally got the water off, my calves are about the size my arms used to be and my arms are thin.   Like those pictures you have seen of the big dinosaurs and little teeny arms.  When I was officially “released” to the therapy floor, I couldn’t role, slide, or reposition myself in my wheelchair and could barely lift my arms over my head.  I have a 24 ounce cup of water by my bed and it took two hands to lift it.  All-in-all, not a pretty picture.

The challenge for the therapy team was to take what was left of me and help me build the strength to walk again.  To be honest, I thought it would be impossible.  But, I kept looking at the poster from Megan in my room (see the first post in this series) that says “I can do all things through Christ who gives me strength” and I knew it would happen.  I didn’t know what God had in store, but I believed it included walking.

I spent a few days in therapy and contracted C-Diff (a nasty bug that causes diarrhea) and they needed to move me off the floor for a week.  When I came back, I really couldn’t walk at all.  The first week in therapy I used a standing frame that braced my knees and hoisted me into a standing position.  Once standing, I would do some simple exercises to strengthen my knees and core muscles.  By the end of the week, I was able to stand at an Evo Walker that allowed me to stand, support myself with my elbows and put weight on my knees.

The Evo Walker allowed me to take my first steps.  It wasn’t pretty, but it was technically walking.  I could also use it to stand for my strengthening exercises.  By last week, we decided to switch to a standard rolling walker because that is what I will use as a transition device until I am walking independently.  It was a huge challenge to go 15 feet with one person on each side of me and someone else following with the wheelchair.  By last Friday, I could walk about 50 feet with standing breaks.  Again, not pretty, but making progress.

I also fought off another round of C-Diff last week that started over the weekend and continued through Wednesday when the medication began to kick in.  But, I didn’t want to leave the rehabilitation floor this time and just worked through it.  Every time I stood up I felt like I would mess my pants.  I have come to appreciate Depends (that makes me sound old) but they got me over the fear of embarrassing myself in therapy.

This week has gotten off to a good start.  The effects of the C-Diff have gone away.  Yesterday morning was business as usual knocking out a few 30 foot walks and wondering when I would break the barrier.  Yesterday afternoon, it happened.  I was able to walk about 100 feet with only standing breaks.  I did it twice.  Today, I walked a total of 300 feet in my two sessions.  I am thankful.

I also have begun working on steps.  This afternoon, I was able to lift my foot onto a 2 inch step and stand on it.  I need to graduate to 4 inch steps before I go home.

This short summary squeezes a few weeks into a few paragraphs.  While the outward signs are physical, there have been spiritual battles we have fought in prayer and spiritual insights from going through this process.   I don’t know why God has ordained this for me and I may never know.  What I know is that it is by His grace I am alive and by His grace I am walking again.  It gives a whole new meaning to the phrase “walking in Christ.”  We can say that our life belongs to God and we have a general idea of what that means.  For me, everything I have done from the moment of my heart attack is done using time that God has given me.  If I had any questions before about who my life belonged to, I don’t now.

Please pray for my continued health and for the strength to build in my legs and arms.  Pray that I can maintain an attitude of thankfulness in all circumstances and that the people here will see my faith and recognize that this is not a “me thing” but it is a God thing.

Thanks for reading along with me.  If you would like to receive an e-mail when there is a new post, please subscribe to the blog by entering your e-mail along the right column.  If you want to just bookmark it, make sure you bookmark the main page: thedigitaldisciple.net so that you always go to the newest posts.

The Digital Disciple Resurrected – Literally- and Ready to Write Again

I am relaunching the blog with a series of posts that were originally written in 2014.


August 8, 2014

It has been months since I have posted anything of real substance here on the blog.  I have found that the charts and Kobo troubleshooting post are generating a lot of traffic (about 20,000 views in July) and the site just grows.  I will update the charts in a month or so with the fall line-up of tablets and smartphones.  All-in-all the site is accomplishing what I had in mind on the technology front.

That said, with recent events that have happened to me, I think that it is time to begin working on the real “blogging” part of the blog, talk about what has happened to me and sharing the various insights I have gained and am gaining as a result.  This will not be technology related, but will be the “disciple” part of The Digital Disciple.  I hope that, in time, the information in these posts  will be as helpful as the technology information found here.

I will start this “reboot” with some background information that will put the posts that follow in context.  About 4 years ago, I was diagnosed with a rare auto-immune disease called Relapsing Polychondritis.  The disease treats a body’s cartilage as a foreign substance and attacks it.  We have cartilage all through our bodies and RP usually attacks the ears and nose causing them to become inflamed and painful.  My RP has attacked the cartilage in my bronchus causing it to be inflamed and, when I have a flare-up, making it difficult to breathe.  I treat it with steroids and immune suppressants and live a normal life most of the time.  My particular manifestation is rare enough that the pulmonology department at the Cleveland Clinic has only about 10 patients with my “version” of the disease.

Around June 9, [2014] I began the early signs of a flare-up and I began to increase my medications to fight it off.  But, this one came on much more quickly and the usual approach did not work.  My pulmonologist later told me the he had seen all 10 of his pulmonology RP patients in June and he thinks that the flare-ups were triggered by some airborne virus that swept across the mid-west.  Whatever the cause, I was in the hospital in Cincinnati in a matter of days.  This time, my breathing was so bad that I was put on a ventilator, sedated, and transported by helicopter to the Cleveland Clinic after waiting 36 hours for a bed to open in Cleveland.  No, I can’t imagine what that will cost and you use can use PayPal to make contributions to the helicopter fund.

When I finally made it to Cleveland and was admitted to ICU, we thought the worst was over. I was still on the ventilator, sedated, and they were struggling to get the inflammation under control.  My wife was walking out of my room so the doctor could put in an arterial line and my heart stopped under the pressure from the breathing difficulties.  I was dead for about 30 minutes while the “Code Blue” crew tried to revive me.  Obviously, because I am writing this, they were successful.  During that time, Mary Ann was on the phone with our daughters in Cincinnati praying that God would spare me.  God answered and the miracles that followed will be part of future posts.

After getting my heart beating, they were concerned about preventing or limiting any brain damage caused by the lack of oxygen.  So, I was put into a coma and “iced.”  I hate being cold and thankfully have no memories of that experience.  They took my body temperature to 36° and questioned whether they should make it colder.  The doctors were not optimistic and believed that I would suffer long-term brain damage, perhaps never recovering.  A week later I was responding to my name and answering simple “yes/no” questions by nodding: Do you know who you are?  Do you know where you are?  I couldn’t talk because of the tube, but could use a chart with pictures to make simple requests and respond to questions.

Finally, they removed the tube about two weeks after they put it in.  I was able to breathe on my own and I could talk again.  After two weeks of being hydrated with an IV, I ate an entire cup of crushed ice.  It may have been the best meal I ever had.

I am pleased to report that God protected my brain and there appears to be no long-term damage.  In Occupational Therapy, I worked a 30+ pin jumping board down to one pin.  I don’t really like those kinds of games, but I had prayed earlier that day for confirmation that there was no lingering brain damage and I’ll take that as the answer.  The OT said she had never seen anyone solve it before.

Folks who cared for me in ICU have dropped by just to chat and confirm for themselves that I have really come out of the coma with no lasting psychological impact.  Folks who believe in God rejoice with us and folks who don’t just shake their heads and don’t really know what to say.  I suppose they think I beat the odds.  But, when God steps in, the odds are irrelevant.  They see the poster in my room from my daughter and grandsons that says in part “I can do all things through Christ who gives me strength.”  Philippians 4:13.  They may not believe it, but I want to give credit to the right person.  This is not about anything that I have done, but about what God is doing through these experiences.

I am now in acute rehab learning to walk again.  My body was weakened by being paralyzed and bed-ridden for weeks.  If you are reading this and inclined to pray for me, pray for strength for my legs and that I will learn to walk quickly.  Walking is the last hurdle to my returning home to my house and family.

This has been about 1,000 words of background.  I want to talk in future posts about what I have learned and am learning from this experience.  I hope you will read along and pass the site on to people you know who may be facing similar troubles.  Please feel free to leave questions or comments.

[The get well note pictured at the top of this post now hangs above my desk]