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!

VIDEO Wednesday (10/12/2016)

Wednesday (10/12/16)

Update:

It’s just over 2 ½ weeks since my revision surgery and I’ve been off all pain meds since last Thursday (10/6) and have had almost zero pain since then!!!  I do get some aches and discomfort but that can be taken care of with ice.  Most nights I am sleeping well (One night I had to sleep in the recliner—but it worked!).  I got out of the house for the first time last Friday (10/7).  My pastor took me out to lunch.  I’m not driving yet so he had to come get me and the wheelchair too!  What a guy!!  Thanks, Jerry!  I was able to go to church and over to one of my daughter’s for lunch on Sunday.  I was out 5 ½ hours which turned out to be too long.  I was worn out when I got home and had to take a 2 ½ hour nap to recharge. I still have a ways to go to rebuild my stamina.

Pretty exciting day for me yesterday!  Since I live so far away from my surgeon (about 10 hour drive), I had a follow-up appointment over the phone with him (I also send information, photos, and questions by email).  I was given the okay to move onto the next phase!!  YESSSS!  I am making good forward progress!

I can start using a shrinker to reduce some of the post-surgical swelling and a can begin doing light compression on the end of my limb.  {Please Note: only amputees who had an Ertl-type surgery can load bear on the end of their limb.  Standard amputees should not attempt this.}  I’m taking a folded towel with the middle slung over the end of my limb and gently pulling until it smarts.  I was surprised at how much I could pull already!  Over time, I increase the amount that I’m pulling and the number of repetitions.

My first amputation was a traditional one and the lower end of the muscles were not attached, so they haven’t worked for almost three years.  My Ertl amputation that I just had reconnects the muscles so they are functional again.  Having those muscles work again makes me feel more whole—that’s a good feeling!  I’m doing some leg exercises designed to get those muscles below the knee tuned up.  On my residual limb, I imagine that I have a foot and move the muscles to get that imaginary foot to move up and down and all around.  I also have to imagine that I have a marker attached to my outstretched toe and I have to write the alphabet on a marker board.  It is pretty fun to see and feel the muscles moving down there again!!!  Right now, I am making the motions with my right foot as well so I can tell my brain what muscles to move in left leg. It is kind of hard to explain how difficult it is to do otherwise without the visual feedback of seeing a foot move. 

I can start doing floor exercises and stretching, along with bending my knee and occasionally kneeling again.  Wow! My world is opening up for me again and I am making good progress.  Minimal-to-no pain and appears to be plenty of good possibilities ahead!!!  I am so very thankful!!!  I deeply appreciate everyone’s prayers and words of encouragement for me over the past three years.  I’m grateful to God for bringing me to this place in my life—it’s been a journey and I’m not finished yet.  I mentioned to my wife last night that for the last three years I’ve been on far end of the bell curve (poor results and a downward spiral of health issues and limited mobility); now I’m feeling like I’ve been moved to the other end of the bell curve and have good things ahead.  NICE!!!

I have a face-to-face appointment with my doctor in Indy set-up up for November 9^th.  Afterwards I’ll travel to visit the guy who will build my new prosthetic limb (my prosthetist), Rob, at his office just outside of Cincinnati (I also keep him up to date with emails and phone calls too).    I’ll be making this loop numerous times during the coming year.

If things continue as they have been, I’ll probably begin the process of getting my new prosthesis in late November or early December. 

Wish you could see the smile on my face!

Check out the YouTube video as well (some duplicate material but lots of different stuff too):  

Friday (9/30/2016)

Update:

Last Wednesday (9/21), my daughter, Ruth, and I were supposed to fly out of our local airport to go to Indianapolis for my leg surgery.  A few hours before the flight, we were notified that it was cancelled.  Yikes!!  We found that there was a flight available out of Minneapolis/St. Paul (MSP) but we had to leave almost immediately.  Fortunately both us were almost completely packed, so we jumped into the car and got going.  During the two hour drive to MSP, we received three additional alerts that our flight was delayed.  Just as we were parking, we were told that our new flight was cancelled too.

My airline had one window open for over 200 people upset and looking for alternate transportation.  We were told that my airline didn’t have any other flights out today; but they could book us on one tomorrow.  That wasn’t going to work!  I had to be in Indy on Wednesday for some pre-op appointment on Thursday or they would cancel my Friday surgery.  We found another airline that had a direct flight so my daughter went to buy us tickets while I waited to get a refund on my cancelled flights.  We had to buy first class seats but that made my leg VERY happy!  We then waited for almost two hours to get our refund.  Only one agent was helping the cancelled flight, although there were at least 8 other agents to help people on other flights.  What really aggravated me was that often times, those agents had nothing to do and just chatted with each other.  The only reason our line moved forward at all was because people got upset and just walked off.  With just a few minutes before my new flight was to begin boarding, we got our refund from United.  Oophs!  I said their name didn’t I?  Their customer service really stunk on this one.  I wasn’t upset because of the cancellations, just how poorly they handled helping those who were stranded.  I don’t plan on flying with them again anytime soon.

So I rode first class for the first time in my life!  Very nice!  My leg and sciatica appreciated the extra room to move around and wiggle.  However, the plane got caught in the backlog of aircraft trying to wait out the storm that was hitting the central mid-west.  We eventually arrived at our destination about 4 hours late; but we made it!!  They got 8-10 inches of rain overnight back home.  I’m glad we didn’t try to leave on Thursday morning.

 










I had three appointments on Thursday to be ready for my Friday (9/23) surgery.  We got those knocked out and felt good about our 7:45 a.m. check-in for surgery on Friday.  I was told to take a couple of my tramadol pain meds prior to coming in so my back and sciatica wouldn’t be as painful while waiting for surgery.  That was the best advice that I’ve ever received!!!

The surgery lasted over four hours.  Dr. Ertl found five nerves that were pinched or pressured at the end of my stump.  Taking care of those should remove most of my pain trouble when I heal.  He got those moved up and away, built the bone bridge, etc.  I had two leg catheters in my left leg suppling anesthesia to the surgery site for the first three days.  That meant they didn’t have to dope me up so much in the head like they did at my first amputation.

 My nurses told me that the Ertl revision surgery was the most painful surgery to undergo.  My thought was, “Nobody told me that before I was cut!!”  I wanted to ask, “Even more painful than childbirth?” but all of my nurses were female and I wanted to live, so I kept that question to myself.

The day after surgery PT came by and helped me get out a bit.  On the seventh floor of the hospital you can access the outdoor terrace and garden.  The garden provides a lot of fresh vegetables, herbs, etc. to food service.  It is a wonderful place to spend some time after being cooped up inside for a couple of days.  I asked to be rolled over to the wall so I could stand up and look at the city below while I’m hanging onto the wall.  Nobody thought of the fact that I only had a hospital gown on when they agreed to it.   I stood up and people were instantly grabbing at the ends of my gown.  Ha! Ha!  Fortunately nobody else was out on the terrace at that time.  Before I went out the next time, I asked for a second gown to wear backward!

Ruth, my daughter, brought me down and stayed with me until Monday morning.  My brother, Kevin, arrived on Sunday night and was staying until noon on Wednesday.

Originally, it was planned that I would stay in the hospital for 3-5 days and then move to a local Indy rehab for two more weeks.  At my second dressing change, Dr. Ertl said my surgical site looked so good that there wasn’t any need to stay for another two weeks or to come back in 10 days.  The first time that I needed to come back was at 6 weeks.  So we cancelled flights, hotels, car rentals, rehab, etc. and booked a new flight home.  I was discharged on Wednesday (9/28) morning.  After being discharged I had to go downstairs to the pharmacy to pick up my medications.  I had to wait in line for over 90 minutes.  So close to being on our way and yet getting absolutely no where!

My brother got me to the airport and up to security.  I made it through that fine and got to my gate.  I requested the front row seat because I knew there was lots of leg room and I have my leg in a protective brace (my knee cannot bend).  First class again!!  Yesss!!!!  With my Percocet and morphine I was flying fine all the way home even without the aircraft. 

My son, Jon, and friend, Art, were working in Minneapolis, so they volunteered to get me at baggage claim and get me home.  That was a nice ride home.  Ruth and Cody were at the house when I arrive.  They helped make certain that I got into bed safely.

I was warned several times by my surgeon and my prosthetist, “Be careful.  Don’t fall.”  It is too easy to have a momentary slip in judgement and slam the stump into the ground.  That’s painful and can easily mess up some of the work done in my leg.  So far, so good!  On my first amputation, I went six weeks before I slipped and fell.  My goal is a 100% Safety Score.  For a guy to accomplish that it requires something phenomenal—It means that I have to stop and think before I do ANYTHING!

About the only thing that I did on Thursday (9/29) was sleep.  It took a while but I was able to get breakfast and lunch fixed and eaten.  I feel like the hospital has turned me into a CAT!!!

Thanks for all your prayers and well wishes.  I’m certain that those have helped me thus far and will help me continue to heal ahead of schedule and keep me safe.  I was also very thankful that two of my FaceBook amputee friends had a chance to visit me in the hospital.  It was great to meet Daniel Waters, and Alicia Carver, and to spend time with them.  

Tuesday (9/20/2016)

Update:

On Wednesday afternoon (9/21), my daughter, Ruth, and I fly out from Eau Claire to Indianapolis, IN.  On Thursday, I have a number of pre-operation appointments.  My amputation revision surgery is scheduled for Friday morning (9/23) tentatively about 10 a.m.  The surgery will last four to five hours.  I’ll be staying in the hospital for three to five days and then transfer to a nearby rehabilitation facility for about two weeks.

My surgeon Dr. Janos Ertl will do a specialized amputation surgery (osteomyoplastic—also known as the Ertl procedure).  The surgery will be done at Eskenazi Hospital in Indianapolis.  Ruth will stay with me through the weekend and then my brother, Kevin, will be with me for the next few days until I am transferred to the rehab facility.  It’s only a four hour drive from St. Louis for my brother.   (My wife, Karen, won’t be coming with me for this.  Someone has to stay home and make money to pay for it all.)

At this point, I believe the rehab facility will be Wellbrooke of Westfield in Westfield, IN.  I’ll be going through physical and occupational therapy while I am there.  Since I’m coming from a distance, Dr. Ertl didn’t want me to travel immediately after surgery.  My brother will be back to visit with me the last weekend in rehab. 

Ruth will return on Tuesday (10/11) to check me out of rehab and take me to a follow-up appointment with Dr. Ertl that afternoon.  We fly back home the next day on Wednesday (10/12). 

I’ll have a number of follow-up appointments with Dr. Ertl over the next year.  I’ll probably be fitted for a prosthesis in November, depending on how quickly I heal. 

I would appreciate prayers for safe and uneventful travels, a successful surgery without complications, and for a number of details to all work out satisfactorily.  

Friday (9/16/2016)

Update:

I had a wonderful week-long trip to Los Angeles with my brother, Kevin.  Two of my sons live in the LA area and we were able to spend a lot of time with them as well as spending an afternoon with our cousin who lives in North San Diego County. 

With my current prosthesis, I can walk short distances and wear it for a few hours at a time, which made this trip more enjoyable than the last one when I was totally wheelchair bound. 

My daughter got me and my luggage to the Minneapolis airport and she left me at security.  Because I could walk, TSA had me go through the x-ray machine, and then swabbed my hands and prosthesis.  My backpack and pocket items went through the regular security screening.  They took my wheelchair and swabbed it and did a visible inspection as well.  Overall, not much more than the normal traveler. 

I rolled myself out of security and found that my gate was only about 75 yards away.  Sweet!  I found my brother waiting at the gate and we ate lunch together.  The gate area was crowded and although they have a designated handicap area, there were so many people and so much carry-on luggage in the way that I couldn’t get near it.  My brother elected to stand near me outside of the seating area.

With my limitations and my wheelchair, I always arrive at the gate early and let the flight attendants know what assistance I need and that I have a wheelchair to stow after I roll up to the door of the plane.  I always call the airlines and let them know about my needs after I buy my ticket, but the word never seems to filter down to the gate, or the details get garbled.  The flight attendants are always helpful.  Usually I get moved closer to the front of the plane and sometimes end up with more leg room, which is really helpful with my sciatic pain.  I get to be first on the plane and last off the plane.  At the door of the plane, I have to take my foot plates and seat cushion off of the wheelchair and put them in the overhead storage compartments.  It is nice to have a traveling companion to do that for me; but the flight attendants have done it for me when I was alone.

I had enough leg room for the flight, although my sciatic pain kicked in almost immediately.  Glad I brought pain meds along for the flight.  Being able to walk on this flight was nice.  I got to go to the bathroom!  And they started the beverage service while I was in the bathroom, so I got to stand and stretch out my hip for a lot longer.  Nice!

My brother arranged for the rental car.  Enterprise has a shuttle bus service with a ramp so I just rolled right on.  We ended up with a Dodge Durango which had lots of leg room for me in my prosthesis, my wheelchair, and our luggage.

At the hotel, I always have to get the wheelchair accessible room.  I’ve checked out the regular rooms but my wheelchair won’t fit through the bathroom door (and there is always too much furniture).   It was a great room; although the bathroom door was a pain in a wheelchair.  I think that I left a few reminders of my stay scratched into the finish of the door.  It takes quite a bit of effort to get the door pulled closed.  I need to remember to bring along some cord to use as a pull cord on my next trip (I have that on my bathroom door at home).

One of the personal highlights of my trip was getting to go to the beach.  My current prosthesis is an elevated vacuum system and has way too many parts that have to stay perfectly clean.  A grain of sand could poke a hole in the liner or sleeve and the whole thing would be shot.  So for this trip (and other uses) I purchased an iWalk 2.0 for the beach.  It’s a crutch that you kneel on that straps to your leg.  I found that I still needed some assistance.  The smaller foot on the iWalk would sink into the sand more easily than my other foot.  Hitting areas of hard sand, then soft sand, etc. made balancing a difficult task.  But I got down to the water!!!  At first I took the iWalk off and crawled down to the water.  The first big wave was unpleasant in my face.  So I went back up and got the iWalk back on to walk into the water.  Between the surf and the sand washing out from under the small iWalk foot, I needed help.  My two sons walked on either side of me and helped me into the water.  Rather cold, but refreshing and it was a victory!!!  Sand got onto the knee pad and I was afraid of an abrasion or sore forming so I got out and enjoyed sitting in a beach chair.  My leg muscles were pretty shot, so when it was time to climb up the beach to the car, both boys helped me as I walked up the sandy hill.  Fortunately, my skin was just a bit roughed up and the sand didn’t cause a sore on my leg.  Great time!

California has some great handicap vehicle laws.  Normal parking restrictions don’t apply if you have a handicap placard.  My son’s neighborhood has some very restrictive hours and requires a sticker to park on it—those didn’t apply to me.  You don’t have to pay a parking meter or pay for parking at the state beach parking lots.  As we went out to different places, my son decided that I was very handy to have around for the great parking!!! Ha! Ha! 

The plane ride back to Minneapolis went smoothly as well.  I wouldn’t have been able to stand it with the pain med for my sciatica.  My brother’s connecting flight had already started boarding when we landed so he took off to catch his plane.  The flight attendants helped me get my cushion and footplates out to the wheelchair and pushed me up the walkway to the gate.  I decided to go it alone in the wheelchair to the baggage claim.  It turned out to be a much longer trek with a few uphill slopes, so in hindsight, I should have accepted some assistance; but I made it.  My daughter met me at the baggage claim and got me and my luggage out to the truck.  I was so glad to get the leg off.  It was starting to chaff and really become uncomfortable.

The trip out to California was great.  I had fun spending time with my brother.  He was an awesome help, especially pushing me through the deep pile carpet of the hotel, and loading my wheelchair up wherever we went.  It was great to visit the boys and my cousin.  Great memories and good times!

Some of the places we visited: La Brea Tar Pits, The Getty Museum, Ronald Reagan Presidential Library, Grauman's Chinese Theatre in Hollywood, Torrey Pines Golf Course, Malibu Pier for lunch, and Point Dume beach.

Next week I go on another adventure to Indianapolis for my revision surgery!  Glad I have a week at home to get some rest before flying out again on Wednesday.

Friday (8/26/2016)

Update:

It’s been a tough week.  Last Saturday, I over did it (it doesn’t take much) and my leg was painful throughout the weekend.  On Monday (8/22), I had an EMG done on my residual limb.  I had pictured some electrodes taped to my leg and them measuring the nerve and muscle responses with gentle impulses.  What I didn’t know about was the electrode painfully pushed into my leg with increasingly more powerful shocks time after time.  I’ve had worse procedures done; but that is one I hope never to have done again!  The hard part was that after each shock I was told to “Relax.  We have to increase the intensity and try that again.”  It’s hard to relax when you know what’s coming.  The second half of the procedures with needles wasn’t bad comparatively.  The doctor doing the procedure kept asking if I was okay and if I wanted to quit.  I told her to proceed because the needles weren’t that bad.  She turned around and said to my wife, “He’s got a high threshold for pain…FOR A GUY!”  Very funny, doc!

Following that procedure, everything hurt for the next couple of days.  I had PT on Tuesday and the therapist worked on my lower back and sciatic pain.  The pain at the distal end of my residual limb was pretty intense too; but he worked at getting my spine straightened out.  Of course, after that the pain continued. 

On Wednesday, the parts I was missing finally arrived so I could put on the new handrims on my wheelchair. The traditional, thin, silver handrims aren’t easy to grasp.  They work fine indoors on level floors.   Whenever I went out, I had to wear a pair of leather gloves to get the grip I needed.  My new Natural Fit rims are more ergonomic—deeper and wider—making it easier to grab.  I had to use my Dremel tool to make some adjustments on the wheel to get them to fit; but I really like them now that they are installed.  One of the best purchases that I have made!

After installing the handrims, I went out to do three quick errands.  It’s the first time since Saturday that I felt good enough to even wear my prosthesis.  It started off as uncomfortable and quickly switched to painful.  It felt good to get the leg off as soon as I got home.

On Thursday, I had an appointment with my CPO (certified prosthetist orthoptist) to get fitted for a new shoe and measured for a new orthotic insert.  It was nice seeing everyone at the shop again.  It has been awhile.  I officially let them know that after surgery that I won’t be coming back to have them make my new prosthetic limb.   I’m not having a traditional amputation revision this time, so I had to find a CPO who specializes in prosthetic legs for an ERTL amputation.  Nobody in my area has experience, so I’ll have to travel to get my leg done.  I’m sorry to end my relationship with my current CPO.  She has literally been with me every step of the way since my amputation (that amp humor was on purpose).  She has worked so hard to help me.  We’ve spent many hours together working on my prosthesis.  It feels like saying goodbye to family.  It stinks; but it is the right thing to do.  

Besides the nerve pain in my leg, my back and sciatic nerve pain is still bothering me at the end of the week.  I hope it goes away soon.  I try to avoid taking pain meds but it takes a lot out of me to “ignore” the pain all day.  My sleep suffers at night because of it.  Recently however I’ve started getting 6-7 hours per night (up from 4 hours per night—so the steroid injections have helped some).  I do better on 8-9 hours; but I’m thankful for what I’m getting.  Just a little too much pain to rest well, I guess.

Less than a month left until my surgery.  I’m eagerly looking forward to it with hope for a better outcome.  I’ve got my hotel for pre-op appointments booked.  I still haven’t decided whether to fly or drive.  Details.  Details.  Details.  I hate not having every detail ironed out right now.  I think that is a desire to achieve some sense of control in my life, when so much of my life is out of my control.  I know that it will all work out in the end…I just need to relax about it.

Sunday (8/21/2016)

Update:

Yesterday (Saturday) went well.  I felt the best that I have in some time (minimal pain & good sleep the night before), so I decided it was time to finally finish redoing a flowerbed that I’ve been SLOWLY working on.  The weather and my body both cooperated and I was able to finish putting in the last corner of the brick edging.  I have a list of about 5 major projects that I planned for this summer.  This is the second (and probably the last) that I get to cross off the list for this year.  I did decide to hire someone to reseal my deck and wheelchair ramp instead of trying to do it myself.  So three things will get done!

After finishing the flowerbed (which took about an hour at my pace) I decided to go do some errands.  Instead of using the wheelchair, I elected to continue wearing my prosthesis.  At my last stop, I realized that I had done too much and aggravated the nerves in my residual limb.  At one point I got hit with excruciating nerve pain while I was in Walmart.  I’m certain that people were wondering why I grabbed hold of a clothes rack and was hanging on a few minutes trying to catch my breath.  I bet I looked rather funny!   I took the leg off as soon as I got home.  The nerves in my leg were not happy with me the rest of the evening.

Pain in my leg woke me up in the night.  This morning the nerves are sort of throbbing.  With the pain I was having I decided not to wear my prosthesis today; I’ll go in the wheelchair instead.  The thought of putting my weight back on those angry nerves isn’t something that could face.  After church I went to my daughter’s home for lunch.  There are stairs and narrow doorways inside where my wheelchair won’t go.  So I tried out my new iWalk 2.0 that I purchased.  It is sort of like a strap on crutch that you kneel on.  I bought it with just this scenario in mind.  It worked pretty well.

This kind of back and forth with pain is what I’ve been facing since December 2015.  I cannot do much; but I have a good day and then do just a little too much and BAM!!!  I’m hurting and less able to do even the simplest task.  It’s not like I am going crazy and trying to walk all the way around the block!!!  Despite every effort of my medical team here, this is as good as it is going to get for me as I am right now.  It certainly isn’t what many amputees experience.  On a standard bell curve, my outcome after amputation is way at tail end of poor outcomes.  My limitations are sometimes overwhelming to me; instead of dwelling on them, I just try to do the best I can with what I’ve got.  However, that doesn’t mean that I won’t seek an improvement if one’s available.  That’s why in just over a month, I’m headed to Indianapolis for surgery on my residual limb.  The surgeon will take about five hours to repair and rebuild my leg.  I don’t relish the recovery time in the wheelchair afterwards (2-3 months).  That means that I’ll miss whitetail archery season this year (I hate not being able to get out into the woods).  But it’s an investment into a potentially better future.

I have a couple of FaceBook friends who have had this surgery done by my surgeon and they have had awesome results!  One of them just walked over six miles without any pain.  WOW!  That sounds like a fairy tale ending to me!  Of course, my results may vary; but their reports are so encouraging to me.

So I continue on, one day at a time, putting my best (and only) foot forward.  We’ll see where it leads me.

Wednesday (8/3/2016)

Update:

I met with the Surgeon (Dr. Ertl) and the prosthetist (Rob Pinkston--the guy who will build my leg) and I am headed towards surgery!  Dr Ertl believes he can significantly reduce my pain and get me more active again.  YEAH!!!!  

Surgery will probably be in late September after I get back from visiting my sons in LA.  I'll be in the hospital for 3-5 days.  After my six week post-op appointment, if things go well I'll be cleared to get started on my prosthesis.  

My prosthetist for this style amputation is actually located outside of Cincinnati.  I'll spend two week with him initially.  So I could be walking again by my birthday in November!!!

There aren't any guarantees but I'm excited because there is hope.  I'll be traveling back and forth to Indianapolis and Cincinnati a lot over the next year, but it will be worth it if I can walk, mow the lawn, ride my bicycle, get out in the woods, etc. again.

My son, Jon, and I are driving part way home today.  It took 8 1/2 hours to get down here with construction and the pain relief breaks I needed.  So we are driving half way today.

I appreciate everyone's prayers and kind words.

Saturday (7/30/2016)

Update:

On Tuesday (8/2), I’ll be traveling to Indianapolis for an evaluation with Dr. Ertl concerning a possible surgical reconstruction of my amputated left leg.  My appointment with him is on Wednesday.  My son, Jon, will be going with me to do most of the driving. 

I’ve had pain issues in my limb for the last two years.  Through the efforts of my medical team I’ve been able to get out of the wheelchair and spend a very limited time each day walking.  But the pain is continuing and there aren’t any viable options left here; so I’m looking elsewhere.

My amputation is a traditional transtibial style.  One of the possible side effects of the traditional amputation is nerve pain developing.  I’ve had reactions to the major nerve pain medication typically used, so I cannot get relief that way.  “I asked my doctor and found out that this drug was NOT right for me!”  I don’t have any structural issues that doctors using the traditional approach see as operable.  But the pain is real and although it starts off fairly mild immediately, it grows in intensity the longer that the leg is on.

At this point, I cannot accept that I have to be stuck in a wheelchair most of the time and then being severely limited by pain with limited activities when I’m in my prosthesis.  I’m hoping to find a solution so that I can become more active, pain-free, and more fully involved in life again.

Doctor Ertl performs osteomyoplastic amputations, commonly called “Ertl” amputations named after his grandfather who invented the procedure.  An Ertl amputation requires both bony and soft-tissue reconstruction to provide an end-bearing residual limb for the amputee.  Contrary to a traditional amputation, an Ertl amputation ends up with the end or bottom of the limb weight bearing.  That changes everything!  One obvious difference between the style of amputations is the Ertl bone bridge connecting the distal ends of the tibia and fibula.  Check out the two photos.  The first one is an X-ray of my leg currently.  The second photo is an example of X-ray of a leg after an Ertl amputation. 

When asked the difference between the traditional and ertl amputations, I’ve been using this word picture (it isn’t perfect, but it is helpful).  The traditional amputation is like rough carpentry used to frame a house.  The Ertl amputation is like finish carpentry used in detailed woodwork.  The traditional method works fine for many amputees; but it hasn’t for me, so that is why I’m headed to Indianapolis to see if I am a candidate for this more detailed surgery.

I haven’t traveled very much in the last year and a half because riding in a vehicle tends to become painful to me after a while, so I am a bit concerned about how well I’ll do riding in the truck for 8 hours.  I’m hoping that it will be very clear to both the doctor and to me whether we should proceed with this surgery. 

I really hope that I am a candidate for this revision surgery because quite frankly, if I’m not or this doesn’t work, I think I’m stuck the way I am.  I’m very excited and grateful to get this appointment so quickly.  It will be great getting a better understanding and maybe taking  a step in the right direction.