Saturday (12/3/2016)

Today’s my third Ampuversary (12/3).  It seems like it has been years longer than that to me since my amputation.  Lots have happened so far and there is still more to come!  First and foremost, I am happy to be alive and experiencing each new day.  I’m thankful for all of the wonderful support and encouragement that I have received from my wife, my family, and my friends.  I’m grateful for the opportunity to spend time with my first grandchild and to watch her grow.  I’ve been blessed to have a supportive team of health care providers (an ever growing list!).  I am happy that I decided to have Dr. Ertl do a revision of my leg recently (9/23/16)—I believe that will really change my life for the better.  It has drastically reduced my pain level all around. 

The past three years have had their ups and downs.  I’ve gone through some major life changes.  I’ve made progress in a number of areas and I’m still struggling in some others.  I’ve made a number of new friends and learn a whole lot about medicine and the human body.  I’ve had to accept some limitations and continue to fight against some of the others.  At times my journey has been the best thing that has happened to me and at the same time it’s been the more difficult thing I’ve gone through.

Lately I’ve been reading book after book written by those who have thru-hiked the Appalachian Trail (AT).  2,190 miles is a long way to walk!!!  Only about 25% of the hikers who begin the trail finish it in the same year.  It goes from Georgia to Maine and travels through 14 states.  From what I’ve read it takes 4-6 months for hikers to finish the trail.  They go through all kinds of weather and face any number of hardships, mishaps, and injuries.  Day after day they slog through the rain, the snow, the fog, thunderstorms, and even occasionally, the sunshine. They traverse the mud, the rocks, the mountains, cross rivers, etc.  They face mosquitos, mice, snakes, bears, and moose.  Their stories talk about endurance and determination--about never giving up and preserving through whatever the trail throws at them.  It’s also the story of the comradery of others on the trail, along with countless acts of kindness of others, which enabled the hikers to continue on each day.  Hikers see and learn about the world from a different perspective, and it seems they come to know themselves better as well.  They find the trail is filled with hardship and difficulty, as well as serenity and beauty.  One of the other lessons learned from these various accounts is that everyone “hikes his own hike.”  It’s the same trail, but varying weather conditions, time limitations, strength and endurance, etc. means that each hiker encounters something different and handles it in their own way.  Sometimes the trail is easy and the load is light and its easy going.  At other times, it takes every bit of energy just to make it the next few feet.

I think I’ve been reading book after book about these journeys because I see parallels to my own journey (I think my fellow amps and anyone with a chronic illness will see the parallels too).  Life is difficult; but it is also wonderful.  The journey isn’t always easy; but it is worth it. We don’t necessarily get to choose what we will experience; but we do choose how we will respond and what we will do in response.  Life (and regaining health) isn’t a sprint; it’s ultimate ultra-marathon of epic proportions.    Many times all we can do is to merely keep on putting one foot in front of the other and see where life takes us. 

Here’s to life!  Here’s to taking the next step!

Thursday (11/17/2016)

Update:

I got home safely this morning from my prosthetist's appointment in Cincinnati.  It was over 1,400 miles round trip.  Glad to be home with a working prosthesis!!!  Although it is a temporary socket, my prosthetist decided to laminate it to give it added strength since I'm so far away from him.  I love that he added blue color to the lamination.  Normally they are clear plastic with white tape around the bottom.  Spending almost a year total in temporary sockets, I've grown very tired of white.  Imagine taking karate and remaining a white belt for over a year!  I'll probably be in this socket until January 2017 giving my leg time to mature.

Here are side-by-side photos of my x-rays.  The first photo is an x-ray of my leg following my standard amputation.  The second photo is seven weeks post-op of my Ertl revision surgery.  The bone bridge between the tibia and fibula will eventually become solid bone.  There are other important differences between a standard amputation and an ERTL that don't show up on X-rays.

Right now, my leg is kind of tender.  I was told that is normal and should toughen up over the next few weeks.  So I have tenderness but the excruciating nerve pain is completely gone!

Saturday (11/15/2016)

Update:

Just finalized my temporary prosthesis this afternoon. Yeah!

So I'll be headed home to Fall Creek tomorrow morning. I'll probably be back in January 2017 for a new socket as my leg matures.

I'm very thankful for all the time and effort that Rob Pinkston at Superior Prosthetic Solutions spent on me. I enjoyed getting to know both him and Patty, the Patient Care Coordinator.   

Looks like I'll be getting home just in time to shovel snow!!! I've got a lot of rehab to do to regain strength and stamina but my ERTL revision surgery has made a tremendous positive change in my life.

VIDEO (me walking on 11/11/16)

I am seven weeks post-op from an Ertl revision.  I was given approval to be fitted for a prosthesis two days prior.  Still adjustments to be made; but I'm making excellent progress.

Saturday (11/12/13)

Update: It’s been a busy, productive week for me.

Tuesday (11/8):    On Tuesday, I drove 500 miles by myself.  I had a follow-up appointment scheduled with my surgeon in Indianapolis.  He wanted to see me face-to-face, so I made the trip.  This is the first long drive that I’ve done by myself in over two years.  Normally my sciatic and lower back pain won’t let e ride in a vehicle for more than an hour.  With the pain meds that I was on for that issue, I would never think of driving that distance.  But my sciatic and lower back pains have been dormant since the surgery, so although I was a bit nervous, I gave it a shot.  I was uncomfortable, especially for the second half but I made it!  That was a victory!

Wednesday (11/9):  I had a great appointment with my surgeon in Indianapolis today. I knew that I was doing well, but I was surprised when the doctor told me he was approving me to be immediately fitted for a prosthesis. It's only been 6 1/2 weeks since the surgery. Usually it's 8-12 weeks before approval is given. I was expecting to be approved in early December.  There is a picture of me, my surgeon (Dr. Ertl), and his nurse (who I email or call weekly).  

After that appointment, I went for my research appointment.  They are tracking my ability to put pressure on the end of the leg (an ability unique to an Ertl amputation).  I was able to push 66 pounds.  I still have a ways to go (eventually I will be able to bear all my weight on the end of my stump), but that is real progress!

Then I drove down to Cincinnati (another 100 miles) to have a consult appointment with my prosthetist, Rob.  We were just going to talk today about my activities, interests, etc. Instead with the doctor's script, he started fitting my prosthesis!  He took a cast of my leg for the socket that afternoon. 

I originally was planning to drive home on Thursday.  But with the potential of having a leg built, I'm staying for a few days. Not certain for how long yet. It all depends upon how the fitting goes and you can only do so much each day before it’s too much and the skin breaks down.  Since this was unplanned,  Rob is graciously squeezing me in between other clients since I'm already here in town.  I’m very thankful for his willingness to help me get as much done in a single trip (It’s a 600 mile trip one-way from home to his office).

I am just overwhelmed that this trip has changed from a couple hours follow-up with the surgeon and Rob to beginning to build my leg.  There is a high probability that I will be going home with a working temporary prosthesis!  I really didn’t see this happening until December so this has blown my mind!

There are so many little things that had to fall into place for this to even happen. My  leg has exceeded expectations so that the surgeon gives the okay.  Rob does his own fabrication (instead of sending it off to a lab) so there is an overnight turn around.  Rob was willing to squeeze me into his busy schedule at the last moment.  My wife and I had discussed the slim possibility of this happening so I brought extra clothes with me just in case.  With that in mind, I also brought all the parts and pieces of my previous sockets down with me so I have the foot, foot shell, elevated vacuum pump, etc.  so that  Rob didn’t have to order parts for this trial version.  Rob "just happened" to have a liner that fit the dimensions of my leg in stock (this part would normally have to be ordered).   I definitely see the hand of God in what is happening. I'm thankful for all those who have been praying for me.

Thursday (11/10):  This turned out to be a very productive day! The picture is me standing in a check socket.  It fit well right off the bat that Rob immediately made a test leg with it for me to try. And I WALKED!!!! Walking back and forth in the bars, we got it pretty well aligned, etc. It felt kind of strange and scary, but much more so exciting and wonderful all at once. Some discomfort but not painful.  After a couple of hours work (walk a little, adjust and tweak a lot) it was enough and we called it a day. I took the leg off and climbed back into the wheelchair.  

Today's my birthday and I treated myself to dinner at Outback Steakhouse.  Yum!  I even had leftovers for Friday’s dinner.

They say that the best gifts are things that you've made and that reflect the individuals likes and dislikes. If that's the case, Rob is making me one of the best gifts for my birthday that I could get!

Friday (11/11):  Friday morning, I went back to Rob's office to walk some more. Walking allows problems to show up so the leg can be adjusted. So I'll walk a few hours tomorrow and we'll evaluate if it's good to go or if I need to stick around for more work.  I had a slight bruise on the end of my tibia.  It’s kind of sore and something that must be closely monitored to ensure that I don’t damage my leg.  With some adjustments, I was still able to walk some in the morning.  I’ve made excellent progress getting this far!  There is a video of me walking in the bars.  

After talking with Rob (and with my wife’s approval) I'm staying over the weekend in Cincinnati. I've got some slight bruising, so I'm icing and resting the leg over the weekend so we can start again on Monday. I was walking pretty well by the time we quit at noon. We're on the right track, just can't force it or push too hard without causing a serious setback.

The Future: I’m not certain how long I’ll be staying.  Right now it is one day at a time as we work to make the leg as comfortable as possible.  There is the reality that my leg still needs additional time to heal (so it’s less sensitive) and my leg will shrink some as I walk in this prosthesis.  So when I am back at home, I will slowly be increasing my time and activity.  I’ve got a lot of muscle and stamina to rebuild, so it will be a process.  And I know that I will be back to Cincinnati for a smaller socket as I shrink (Rob thinks that will be in December).  Making a prosthesis at a distance is a big investment; but nobody in my area has an experience in working with Ertl amputees, so I’ve got to make this investment in time, money, and travel.

And even with the discomfort I currently have, it is OBVIOUS that the revision surgery was a complete success!!!!  Even right now at this early stage, this is a monumental improvement and reduction in pain.

Humor: And on a final humorous note, for the most part here if I hear an accent, it’s a slight southern drawl.  But there are also folks with more of the east coast “fast talk” than I am used to hearing in Wisconsin (or Missouri).  I’ve had a couple of people ask me if I had a “baloney” amputation.  I was confused at first until they explained, “Is it an above knee or ‘baloney’ amputation?”   Ohhhh!  I had a “below knee” amputation.  Ha! Ha!  

Wednesday (10/26/2016)

Update:

Another very positive week! 

This Friday (10/28), I will be five weeks post-op.

I was given approval to begin ‘standing end-bearing’ exercises by my surgeon.  It’s the next step in preparing for using a prosthesis following my ERTL revision surgery.  I stand up and put my residual limb down on a bath scale and then push down.  Eventually I’ll be able to bear my entire weight on the end of my limb, but right now I’m supposed to start small and gradually increase pressure.  This is something someone with a standard amputation cannot do, but the ERTL bone bridge which I have allows it.  On the recommendation of my prosthetist (the guy who will build my leg), I started out doing this exercise sitting down.  I have more control and less chance of overdoing it in the beginning.  This morning I pushed 15-20 lbs. five times.  I felt that I could have done more; but I was warned not to push it because it takes a while to recover from a set-back. 

I also had a great appointment with my physiatrist (physical medicine and rehabilitation doctor) today.  Dr. Schmidt has been with me since I first became an amputee almost three years ago now (12/3/2013).  She was very happy that it appears that I found a solution to my pain and I’m on the road to recovery. 

My pain continues to be a zero or a one.  I’m not taking ANY pain med (prescription or over the counter), occasionally I do ice a sore spot.  Not only is my leg pain free; but currently my sciatic and lower back pain are also gone.  Post-op swelling in the leg is almost non-existent.  I’m feeling more energetic and able to do more things.

I’m scheduled to see my surgeon face-to-face in a couple of weeks (Nov. 9).  I’ll also do a face-to-face appointment with my prosthetist, Rob, and continue my participation in a research study, while I’m in the area.  I’m not necessarily looking forward to the long drive to Indianapolis, but it won’t be too bad if my sciatic/back pain doesn’t return.

It may be a cloudy, wet day outside; but I’m all sunshine on the inside!!!

Thursday (10/20/2016)

Update:

On Tuesday (10/18), I drove on my own for the first time since my revision surgery in late September.  I’ve been off all pain meds for a couple of weeks, regained some energy, and figured out how to load my wheelchair safely into my truck by myself.  So I did a number of errands: filled the truck with gas, aired the tires, got a haircut, bought some groceries, and picked up a new pair of shoes and orthotic inserts, etc. 

This is the first time in three years that I got something other than a pair of black shoes.  The new shoes still look kind of strange to me; but I like them!  On Tuesday, I also got my shrinkers so I can begin reducing post-op swelling. 

It’s nice to regain a bit of freedom again while waiting for my limb to heal enough to begin building a new prosthesis (???about another six weeks or so???).  I’m on the way and very thankful for a great day!