My first post!

So this is my first post of my new blog.  I hope that it will be a way for me to put down some of my thoughts as I go through the process of choosing an amputation over surgery.  I also hope that it helps others as they may be going through the process of choosing an amputation. 

 



Skydiving at 13,500 feet!!

So here I am...skydiving and having the time of my life!  Yet, in the last four years, my body has been changing.  I was born with a genetic disorder (Nail Patella Syndrome or NPS) and I have been pretty lucky as an adult to not have a lot of problems with it.  I have done most of what I wanted to.  I would not say I am athletic, but I am adventurous and I do not like to be slowed down.  I have been skydiving, swimming with sharks, zip-lining, and I am a huge roller coaster fan.  But, now things are changing and I am faced with challenges as I get older and my right leg gets weaker.

So lets start at the beginning and work our way to today...

Freefalling at 120 mph

I have Nail Patella Syndrome (NPS), a rare genetic disorder that causes my fingernails to grow improperly and I do not have any knee caps (patellae).  My right leg does not bend.  When I was born, I had a club foot on my right side.  I immediately was casted to correct the problem.  Then, at about seven years old, I had an Achilles tendon and hamstring lengthening.  While casted for that surgery, I experienced the skin rotting inside the cast.  When they removed the cast after seven weeks, I had to go in for immediate surgery to remove the dead tissue and replace the skin with skin graft.  Then at 13 years old, I had my first leg lengthening where they made the tibia/fibula longer.  At 16 I had another leg lengthening where they made the femur longer.  Then I had another surgery on my ankle to reconstruct it and the knee to try and position muscles so that I could lift my foot up from a bent knee position.  The ankle/knee surgery was the most painful and the most difficult to recover from because I had to relearn how to walk and it would forever cause me to walk with pain.

Now fast-forward to age 47.  I am a teacher and I must be on my feet all day.  This year I experienced a stress fracture on my fourth metatarsal.  After a few X-rays, I was told that it was not broken, so I continued to walk on it until it completely broke through after two weeks.  Ouch!  Then, as I was going through our workroom door, I fractured my fifth metatarsal.  So I went to see a doctor...he put me in a boot...and I stayed in a wheelchair and taught.  I threw out the idea of amputation when I went to see the doctor, but was dismissed quickly.  After about six weeks, I was told that I was healed and to work my way out of the boot into regular shoes.  I was shocked because NPS causes the healing process to be a little slower.  So I kept the boot on for another three weeks just to be safe and then came out of it.  I rebroke the foot right away.  I got another doctor.

Coming in for a Landing!

During all of this time, pain began to shoot to my last three toes on the right foot.  I attributed it to the broken metatarsals, but the pain was unrelenting and at times, excruciating.  It made teaching (or anything) very hard to do.  As we dealt with the broken foot, I kept complaining about the extreme pain in my toes.  The doctor decided I had Complex Regional Pain Syndrome and sent me to get three nerve blocks.  I mentioned amputation again...but was redirected to ankle reconstruction and a knee specialist.

After going to the knee specialist, we finally seriously discussed amputation after considering multiple other options including knee replacement (muscles atrophied and circulation bad so not a viable option), knee fusion (it would cause me to swing out my leg and increase pain in hip and back so not an option).  So, we are now in the phase where we are seriously talking amputation (YAY, FINALLY!!!) and I am very excited and energized.

So, I have four appointments next week to see the pain specialist, foot specialist, prosthetist, and orthopedic specialist.  My hope is that when I am done with all of those appointments, we will have decided that even though there are surgical options, none of them are viable and produce relief from the pain.  The only viable option is amputation. 

Now I know it sounds weird that I want to go the route of amputation, but I have been living with this pain and frustration for 47 years.  I am ready to remove it and work on getting a prosthetic leg that allows me to walk without worrying about each step and if it will hurt or bones will pop.  The bones in the right leg and foot are thinning to the point that just taking a step may result in a broken bone.  I do not want to live that way.  I want to be able to get up in the morning, put on my leg, and get to work (or fun).  :-)

Oh...by the way...Murphy is the name of Robocop...and I am working on getting a prosthetic leg that can meet my needs for my active life.  That may mean a C-leg.  Kind of Robocop-ish.  So the prosthetic limb will be named Murphy...(my husband's idea).  :-)

Oh My Gosh....I did it!!!

When I discussed the possibility of amputation with my family, there was almost an immediate sigh of relief from them.  They have watched me each year experience more and more pain as the leg and foot gets weaker and weaker from age.  They understand why I choose amputation.  My coworkers are mixed.  Those that know me well understand.  Those that just know me say, "We will pray that you do not need an amputation".  But I ask them to please pray that I can have an amputation!  :-)

My husband is my rock and he keeps me on solid ground.  His life will change because of this, too.  He is so supportive.  My children are great, too!  I have four children including two boys and two girls.  My first son is 24 years old, my girls are 23, and my youngest son is 22.  I have been without driving privileges for the last four weeks and they have driven me everywhere including work and doctors appointments more than two hours away!  My oldest son, Tavis, told me that when I get the Robocop leg, I will have to get the optional pop-out gun installed.  I told him that I might have to get a cup holder installed, as well.  :-)

So let me tell you what I am excited about with a prosthetic leg. 

#1:  Reduced pain.  I am aware that not all the pain will go away, but I am convinced that much of the pain will be gone after recovery and fitting for a prosthesis.  If I can get a 50% pain reduction, it would be worth it!
#2:  Increased mobility.  Right now I have to be so careful with walking.  Uneven ground wreaks havoc on my foot and knee.  I always walk very, very slow.  Shoot...I was walking to our car one day, and a two year old was walking faster than me!  I am looking forward to being able to walk and talk at the same time instead of always watching the ground to make sure I was careful where I walked.
#3:  Increased quality of life.  My hope is that when I wake up in the morning, I do not experience so much pain and frustration that I can ENJOY things again.  I have plans...and the way things are right now, I may not achieve them...but with an amputation, I can move forward!
#4:  More shoe options.  This one is so exciting.  With my feet the way they are now, I have to be VERY picky about shoes.  But with the prosthetic leg, I will have increased options for shoes.  What an exciting benefit.  I catch myself already looking at the shoes I might be able to wear once I have the amputation and get the prosthetic leg.  I guess I better start saving now!
#5:  Increased confidence.  Walking anywhere right now is sketchy...and people love to talk and walk, a feat I have not mastered.  I believe that with a prosthetic leg and some physical therapy, I can master walking on the new leg and get a newfound confidence in myself.  I cannot wait to have an intelligent conversation while I am walking!

Now let me tell you what I am nervous about:

#1:  Body image.  All I will have is a stump on the right side...and I am sure I will not go around showing it off.  I do not think the prosthetic leg will bother me, but showing the stump will.  I worry about my husband and if he will be repulsed by it.  We have had this discussion already and he says that he just wants me to be happy and without pain.  He has been good about my current leg and its deformities, so I have no reason to think he will not handle the amputation just fine.  But I still worry.
#2:  Work.  How long will I be out of work.  How long before I am back to 100% (or in my mind, up to 150%). 
#3:  Am I tough enough.  I am pretty tough...but losing a limb is serious business.  My goal is to bounce back quickly, get up and moving, and get into a prosthetic leg quickly.  I hope I am tough enough to do that.  I think I am, but this one is a new one.  I have a history of being pretty tough and determined.  Lets hope that continues!  :-)
#4:  Transitioning professionally.  I am completing my doctorate (I am currently ABD) and I am ready to move up to teaching at the college level.  That is made harder by going through this medical stuff.  My goal is to teach teachers how to teach including classroom management skills and how to use technology in the classroom.  Lets hope that I can continue to move towards that goal.  It may be delayed a bit, but I am determined to get there!
#5:  Medical complications.  This one is the fear of the unknown. I do not heal quickly, muscles have atrophied over the years, I have a plate and screws in the femur that I am sure will need to be removed, I have bone density issues, can my femur (that is thinning) support a prosthetic leg...so many questions that I am sure we will answer, but they are weighing heavy on my mind.

So...there you have it.  My first post.  It is long, sure enough.  But I have had a lot on my mind and I was ready to unload some of it.  Hopefully this will allow my brain to rest a bit before I prepare the next post!  :-)  Just a few more days and I will have a report from the multiple doctors I am seeing and hopefully they all support amputation so we can move forward.  I AM READY!!!