Month: September 2016

Ankle Wars: A New Hope – The Story Part 22

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I stayed mad the entire 16 weeks of not being able to bear weight. I tried not to show Amanda my emotions, she was under a lot of stress keeping up with the household, working full time, and going to school. I had a few calm days, but after each follow-up appointment I grew more bitter knowing that I was never going to see my surgeon again. His replacements lacked qualities that I had grown accustomed to over the last few years. Communication, compassion, and overall good bedside manner are a few qualities that I missed.

It was okay though, I was not feeling pain around the 16 week mark and I was ramping up once again to start physical therapy.  It was going to be great again to get out of the house and see my therapists that had been working with me over the last 6 years. I always went back to the same place.  Not only did I like them a lot, I also did not have to explain my past. Explaining my past became a nuisance.  When I did get out strangers always asked me how I was doing and what happened. It is another reason why I started this blog. Now I just hand them a business card and say learn more at this website.

I feel confident that I can summarize therapy in a few sentences since I covered it in a prior blog.  It was exactly the same. The same exercises, the same pain trying to move my ankle back and forth to break up the scar tissue, and the same soreness in my muscles as I was trying to build them back up after atrophy.  I spent three months, three times a week, $30 out-of-pocket a visit going to therapy.

During the three months I was able to use the knee scooter with confidence around the house. I fell one time when I lost my balance, but I was not injured.  Luckily, it was the only fall that I had during this time.  Owning a knee scooter once again enabled me to contribute around the house and help ease Amanda’s stress. It helped me feel better knowing I was contributing towards the household chores, at least a little. The only true stress I had was following up with the disability company. I had to constantly provide them with notes, updates, and letters on how I felt. Knowing I physically couldn’t go back to work, the  anxiety I felt every month hoping that they will continue disability was at times overwhelming. The medical bills from the surgery were piling up, the co-pays of $90 a week for therapy were taking a toll and the lower income from disability was catching up to us. My parents were always there if we needed the help, but I was determined to get through this financially on our own.

The first week of September was here, the fourth month of physical therapy, which was 8 months after the surgery. I was supposed to be at least 75% weight bearing. However, I could only stand with about 50% of my weight down, which was measured by using their scale. My ankle swelled quickly, the stabbing pains still remained, and the throbbing felt no better. I achieved 50% because I grinned and bore it, determined to try to get better, but the little hope that I had left was fading away quickly. I remember sitting on the table feeling frustrated, and my therapist sitting in front of me. He explained to me that I have been through 4 surgeries, two of which were major and that complications during rehab were expected. I tried to listen, but I knew…I knew exactly what this pain was. It wasn’t from using it, it wasn’t from atrophy, it wasn’t from healing. I knew all too well what this pain was.  I felt it three times before.  The pain, this unrelenting,  unyielding,  always damning pain was pain from a failed surgery.

I do not know how I knew, but I did. After so long, you can distinguish different types of pain. I knew what muscle soreness felt like, I knew what tendon and arthritis pain felt like, and I also knew what bone on bone, damaged nerve, and cartilage deterioration pain felt like.  It only took until the end of September for my therapist to utter 10 words that I never heard before out of the mouth of a doctor or therapist.

I sat on one of their tables, legs hanging down with my foot in his hands. He looked up at me after glancing over at the chart and quietly stated, “Doug, there is nothing more I can do for you. I cannot move on with therapy due to your pain, and after dealing with this for years, I cannot imagine how you feel.”

Looking up at him, caught 100% off-guard by his comment, I took a quote out of Amanda’s mouth and stated: “I’ll be fine.”

I picked up my crutches, said good bye for the last time to everyone, thanking them for their help, and got into the passenger seat of Amanda’s car and went home. I was not sure what to do next.  Therapy was over, I did not make much improvement over the four months, and there was no reason to go back to the doctor at Penn State. I was scared that all my documentation supporting getting disability benefits would end. I was at a loss.  Was I supposed to remain in pain the rest of my life? How was I going to get better?  I already consulted the main hospitals in this area. I had four surgeries.  Six years of on and off again physical therapy. I felt, as I inched toward my chair to be swallowed up by its cushions, the pain of lightning bolts flashed through my ankle and up my leg. Every shock of lightning and the throbbing of thunder clashing in my ankle and leg ached in my entire right side. It was as if a storm was forming inside of my body. I laid back into the chair feeling that the tempest growing inside of me was going to be my ultimate destruction. “There is nothing I can do for you…” echoed through my head until the darkness of sleep overcame me with help from my pills.

I must have been extremely exhausted from the pain, therapy, and the news I received. When I woke up in my chair almost 8 hours had passed and it was nearing 10 pm.  I never sleep that long and anything over 4 is oversleeping for me. Amanda was already in bed and depression was winning against me. I picked up my phone and called one of my lifelines…my dad.

“Hey Dad, I hope you weren’t sleeping, I just woke up…” I went on to explain to him the pain I was feeling, the defeat on my therapist’s face as he uttered those ten words.

“I guess I will just live with it for now and see if I get better.” I concluded

“No..No…don’t do that. You need something better than what hospitals can offer you around here. I told you this before and it is time you do it. No ifs, ands, or buts.”

Before he could finish I already knew what he was going to say.  He had said it before after meeting with Dr J. Then he said it again after another appointment with the doctor after him. He stated that I needed help that could not be offered in the area. Knowing what he was going to say, I still asked: “What’s that?”

“It is time to go to Johns Hopkins. It is the only hospital that will be able to help you that is not too far away. If they can’t help you no one can.  You just need to call them up and get an appointment and go down. Just to see what they say.”

“Dad, do you have any idea how much that is going to cost? I am already fighting off medical bills, therapy bills that did not help me. I cannot take the chance of going out of state and them not helping me. I can’t afford it right now.”

“I’ll help you pay for it if I have too, you need”, he said in almost a demanding voice.

“Fine , I will look up the information tomorrow, but they won’t be able to do anything.”

“Yes they will, they have the best technology and most advanced care. They will help you.  These doctors and certainly Dr J. doesn’t know how to deal with you. They never had a patient  with issues like this. Even Dr. Bustillo said it was rare for these procedures not to work. You need to go to a place where they have seen everything.”

“OK, OK”, I said in defeat.

“So tomorrow you call them and let me know what they say, I will help pay”, he stated again, to drive home the point, that money is not an excuse not to have a consultation visit.

“Alright, I will let you know.” I hung up the phone and sighed.  The last thing I wanted was to go through all of this again. The last thing I wanted was to explain to another person how I felt, what I went through, yadda…yadda…yadda.  They’re not going to help me anyway, I thought.

Around 4 a.m. I pried myself out of my chair and headed to bed. I lay in bed thinking dad would never relent unless I make the appointment. They won’t be able to help me, I thought. I pulled the covers up to my neck. If they can’t help me here, why could they help me there?  However, Jamie mentioned it, Dad did, I think Brad and Ms. S. mentioned a better hospital to go to like Hopkins.  And right before I fell asleep, a slight smile came across my face and I uttered out loud to no one else in the faintest voice, “Well..maybe they can.”

 

Afterword

I cannot believe I am on 22 posts. I never thought it would be this many and as I catch up, my story is continuing and evolving to much more that I need to write about. Let’s hope by the end, it ends with: and they lived happily ever after…

Hell Hath No Fury Like A Patient Scorned – The Story Part 21         

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Imagine sitting in a chair, a chair that feels like it is slowly wrapping around you and making you it’s own.  Everyday little by little you slowly sink further and further into it.  The only escape is grasping the edges when you have to go to the bathroom, and every other day sleeping in your bed.  I watched the world go by for three weeks.  I watched my mother-in-law take care of me as I was slowly consumed by my chair,  and Amanda awaking, going to work, coming home, sleeping: rinse and repeating with the sun rising and falling – which seemed like an eternity in between.

I no longer possessed my work mobile phone, and as the weeks went by my personal cell phone almost fell silent, with only a few interruptions. I sat there, in cast, in pain, and no real hope operation  number 4 was going to work.  13 more weeks….

By the end of the third week I was looking forward to my follow-up visit.  Follow-up visits were the only time I left the house, it was not worth the pain nor hassle any other time.  I wanted to call my doctor to confirm my much anticipated appointment.  Oddly, even after three years I still did not have his number in the Contacts of my phone.  I opened my laptop and went to Penn State’s hospital website and began to search his name.  It only took one search for his last name before panic began to sweep over my body.  “B…B…..B…….B…. where is he, maybe his first name?  J…no..no what the heck” I muttered to myself.  “He has to be here….”  I tried to calm my voice.  When I Googled his name, it came up under Penn State, but Google does not update immediately when something changes.

I sat there for an hour searching and searching until the office was open.  As soon as 9 am hit,  I dialed his office:

“Hello, Penn State Orthopedic. How can I help you?”

“Um…yeah.. I’m calling to confirm my appointment, but I was on your website and my doctor is no longer there.  I think my appointment is in a few days.”

“That is odd”, the receptionist responded.. “It may be something with the website.”

“No..no all the other doctors are there except mine.  Is something going on?”

“Not that I know of, let me connect you to his secretary”, she replied.

I was transferred to the secretary in a few seconds.

“Hey, it’s Doug”. She knew me by my voice and name.

“Hi Doug, how can I help you?”

“I was on the website and I couldn’t find Dr. B.’s profile.  I wanted to call to confirm my appointment.  What’s going on?” I asked in a panic with a quivering voice. I have no idea why I was so alarmed by a missing profile, but to me it threw up a red flag.

She must have sensed my panic when she continued to say: “Oh, they already did that?  He is seeing patients for the next few days then he is moving out of the area up to New York.  You will be seen  by Dr. J.”

“WHAT!!  I wasn’t told he was leaving.  Why wasn’t I told?  He did three surgeries on me, I have a long follow-up process!” I was starting to feel furious about not being told the doctor I relied on to get better is leaving with no notice.

“They are sending a letter to each of his patients, but some will not get it in time. I’m sorry, but your appointment will be at the same time.”

“Thanks”  I said.”I’ll see you later.”  I slowly put down my phone.  My doctor was gone.  My work phone was gone, now my doctor was gone.  Without even a word, he’s gone.  He was supposed to help me, he was supposed to make sure I got better….

“THIS SUCKS!!” I screamed throughout the house, and downed another two pills before passing out.

My dad had to take me to the appointment since Amanda was working late.  I heard Dr J. was a really good doctor and he was actually a step above Dr. B, so I should be okay I told myself.  We arrived at the office and the usual scene took place.  I was on the table with my leg elevated on it but instead of Amanda in the chair, my dad sat there.  A few moments after the initial student visit, the door opened.  In came a man about thirty years older than Dr. B.  He looked grumpy, maybe from patient overload, I am not sure, but he didn’t look pleasant.  Not introducing himself, not saying “Hi”  to me or my dad, he literally looked at me three steps in and said, “Okay, stand up.”

I looked at my dad wide-eyed and back at the doctor. “Are you serious?” I spat.

“Yes, get up, it’s been three weeks, you should be able to weight-bear.”

“You’re kidding me!  Dr. B stated I needed to non-weight bear  for 16 weeks! I am not going to risk my fourth surgery until the healing time is up.  It has only been three and a half weeks”

“Well normal people can stand at this time.”

“Have you read my chart? Does my chart look like a normal person!!!”  My temper was beginning to boil, and my dad who is usually more short-tempered like me in situations like this, was shocked into silence.  “Do you know this is my fourth surgery?”  I almost did get up in fury to hit him in the face!  First they do not tell me my doctor will not be there and they replace him with this idiot, I thought. (Sitting here typing I can feel my blood beginning to boil just thinking about it.)

“Oh? You had other surgeries?  Let me see….”  He turned to the computer nonchalantly to check my chart.

“You cannot be serious”, I yelled.  “You asked me to stand up and risk my surgery without looking at my chart!  You did not review Dr. B’s notes in the system?  You were his boss right?  You should have done that before coming in!”  Already upset at Dr. B. for abandoning me to this goon, I grabbed my crutches and left the office in as much of a fury as I could, with dad just as mad.  I left Dr J. standing in the office.

“HOW COULD HE ASK ME TO STAND! HOW COULD HE NOT HAVE READ MY CHART!!!  I AM SORRY I AM NOT NORMAL AND THE FIRST OATS DIDN’T WORK AND I CANNOT STAND!!!”  I screamed in the car.

“What an asshole!” my dad agreed.  “He came in and just asked you to stand.  He didn’t introduce himself, he didn’t acknowledge I was there.  He didn’t know you had complications in the other surgeries and they didn’t work.  He didn’t read your chart.  He may be overwhelmed by the extra patients, but it is inexcusable not to introduce himself and ask how you are doing.”

(Amanda is beside me as I type and she can see my face.  I am starting to get enraged reliving this…I must get past this fast.)

The rest of the car ride was quiet.  I clenched my mouth to avoid saying any more profanities.  I felt betrayed…

I crutched into the house and slammed the door.  I never wake up Amanda from sleeping, but I had to.  I needed to vent.  I burst through the bedroom door.  Amanda, startled, sat up straight asking, “What’s wrong!”

I told her my story. By the time I was done Amanda was very upset.  She was upset that had happened to me, upset I was angry, upset that she did not go to the appointment, and, as  a nurse, upset a professional acted like that at bedside.

“I am so mad”, I grunted.  It has been more years than I can remember since the last time I threw something in rage, but I picked up my knee scooter and with all my rage, anger, and frustration I threw it across the room, banging it off the bedroom door, hitting the hall-way floor, and bouncing it into the next room before it settled against the bed.

I went back out into the living room leaving Amanda in bed.  He is not going to get away with this, I thought.  I waited `til I calmed down, and a few hours later I called the Patient Relations Department.  After an hour-long conversation and 100 apologies, Dr. J. called that night to apologize.  Still miffed, I had Amanda take the phone call. All I heard through the phone was his voice saying: I didn’t intend to, before I left the room .  (I can feel the anger subsiding just like it did that day, as I am getting past this part of the story.)

I eventually saw another doctor in the practice a few weeks later, and though he was a bit better than Dr. J he was nowhere near Dr. B.  I honestly cannot recall his name.   Needless to say, he knew my chart from front to back before the appointment and agreed with DR. B’s notes, to no surprise of mine.  Nothing besides new introductions was gained from the appointment that happened two weeks after the incident with Dr. J.  I was still non-weight bearing for another 11 weeks, but at least I had a new doctor.

However, realizing that Dr J. would ultimately be in charge of the decision-making, I knew I needed to make a change.  But I decided I would stick with the new doctor in the practice until my recovery was finished and I learned if this surgery worked.

Afterword

Some people might say I overreacted.  I can only say this to that:  I had just come from Dr. Flash to Dr B.  I had hoped that Dr. B was the answer.  I found out through a missing profile on the hospitals web-site that he was no longer there.  I was then put into an office with a man that was even worse than Dr. Flash.  At least Dr. Flash introduced himself.  It was enough to make my blood boil then and still today as I type.  I received multiple letters and still have them from the Patient Relations Department, promising better care and knowledge of an existing patient before the appointment.  I also understand he was probably under a lot of stress. But to be ignored, for my dad to be ignored and to be given an order to stand, something I wanted to so for so long without pain, was inconceivable.  I still wonder how much of a difference it would have made  if he would have just introduced himself with a handshake. I bet it would have made a world of difference.  I advise surgeons to learn good bedside manners and use them with every patient.  Treat the person, not just a body part.

Surgery 4 – The Story Part 20

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Amanda and I knew what was coming. 16 weeks of non-weight bearing, being in a cast which will seem like forever, being dizzy from the pain pills, hurting from therapy and trying to get back on my feet, and worst of all Amanda doing all of the chores and driving everywhere. Since this started I only had a small period where I could drive, and that was when I was working. The pain was too much when I pressed on the gas and the brake to be safe. A couple of years ago my district manager mentioned hand controls, but I had told myself I didn’t need them. I was going to get better!
Knowing what was ahead of us, we knew we needed something to get our minds off of everything. We planned a trip to North Carolina. Amanda was just starting to become exposed to Nascar and I had worked as an intern for them, so we thought going to North Carolina to see their Hall of Fame, garages, and Charlotte Motor Speedway would be just the ticket to wash our worries away, at least for awhile.
The trip went off without a hitch. It was a wonderful experience. We took a behind the scenes tour with a tour guide and one other couple. The tour included visiting almost all of the garages in the area and a trip to the Hall of Fame. It was one of the coolest trips I have ever seen. On top of that, a loan director who was a friend of mine lived in North Carolina, and after some last minute planning we got to meet with her at the Cracker Barrel that was in the area. By the time the trip was over and we were home, we were both feeling a lot more relaxed, and the idea that we had been through this before, “we can do it” felt stronger than before.
After our trip, we waited three more months to find a donor match for the cartilage. I always felt bad that someone had to die in order to obtain the cartilage. The pieces I need were too big to take out of a living person. If they would do that then that person would have a cartilage deficiency and would most likely have to go through the same exact surgery I was going through.
A few days before the surgery Amanda came up with a great idea to help relieve her stress the first few weeks I was going to be confined to my chair. Her idea was to have her mother come down and help us for a few weeks until I could get around on crutches and put some weight on the cast to get around on my knee scooter. I always liked my mother-in-law, so I thought it would be a great help to Amanda and me and agreed to it. With vacation over and help plans in place, the only thing we could do was wait.
On the eve 1/06/2014, I was happy to see through the window that no snow was falling to the ground. For some reason over half of my surgeries were around Christmas time and the worry of snow or bad weather seemed to start outweighing the nervousness of the surgery. The reason why was, I was no longer worried about surgery. I was an expert. I even had the scar marks to prove it. To me surgery was just another day at the doctor’s office. With no worries in mind when it came to the surgery, the weather was what concerned me the most. However, tonight and early tomorrow morning was going to be clear.
So here it was, Surgery 4. No hype, no nervousness, no worrying, no building up to a climactic moment of hearing my name and being called back, the only feeling was just impatience. I already decided I was staying the night after the fiasco of the second surgery at home, so I knew I was not going anywhere, but it did not mean I did not want it over with. I found myself once again lying on the bed, wires and tubes hooked up to me, marking pen marks on my ankle. My parents were outside in the waiting room, and Amanda was sitting beside me. The hospital staff came and had me sign the usual forms, and I spoke with the doctor who said this would have to fix it. He stated: “Redoing the OATS surgery should fix everything and I am going to clear up any scar tissue or bone fragments.” My attitude was, “Well, we will see”. I told the anesthesiologist do not tell me when they are going to put me out. A few short minutes later, I was wheeled back in the hospital bed and told Amanda I would see her soon. I was heading back to the operating room once again to solve a problem that plagued me for years.
About four hours later, I woke up to the usual noises found in a hospital. Beeping of and buzzing of machines. The suction sounds of respirators, and the sound of feet hustling across the floor. I found myself in my own room with the lights out. My first thought was, I guess it is over. I looked at Amanda who was sleeping in the chair beside me. I was not feeling any pain, but I was still very groggy from the anesthesia. I was never good at waking up from it, but it never gave me any other problems besides that. I managed to look over to the left and was literally thrilled to see a giant water mug. It was big, it would hold a lot of ice and there was a huge straw I could drink a ton of water through. The only thought I had until the nurse came into my room with my parents was: Man I hope I can keep this!
Amanda woke up from the sound of the nurse and my parents entering the room. My parents made sure I was OK and promptly left, so I could get some rest. Amanda stated she would spend the night, and they provided her with blankets and a chair that did not look comfortable to spend the night in. The nurse told us the doctor would be with us shortly since he could not meet with us in the initial recovery room, a room I do not even remember.
I was almost asleep for the night, until a painful pee flashback came to my mind. I asked the nurse for a drug to help with any catheter pain, and even though she felt it was an unusual request, she obtained permission and gave me some medication. By the time I drank it down with ice cold water from my incredible new mug that I was allowed to keep, the doctor was at the door.
He apologized for his being delayed. I remember it was almost 8 pm. I was surprised he was still here. He told Amanda and me that when he went in to redo the surgery he saw that the original surgery was OK and still intact. He stated the MRI he based the surgery off of, did not show the deterioration of the cartilage at the bottom, along with some bone fragments. Much like the first OATS surgery where he replaced the cartilage and bone, he had to do the same to the bottom. Although the surgery had to be done in a different area than what he prepared for, it was fortunate; he was still able to use the donor piece that was provided to him by the hospital. Before he left the room he looked at me lying on the hospital bed and stated, “I think we got it this time, you should be OK”
As soon as he left I fell asleep for the night. Except for the annoying interruptions to check my blood pressure, it was a very pain-free, uneventful night.

Afterword
I wanted to portray in this entry that to me it was just another procedure another day at the office and my hope was just on a wait and see basis. 2008 is when my pain started and by 2009 was my first surgery and recovery. It is now 2014 in my story, six years later and three more surgeries performed. Being in pain, going through the process of recovering, and finding myself back in pain and in the hospital seemed like my new “normal” way of life back then, little did I know then in 2014….is that….is that….it still is….

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The $20,000 Mug

Ahhhh!!!  My $20,000 mug.  That’s right, this is my $20,000 mug.  Between surgeries, co-pays, co-insurances, deductibles, out of pocket maximum, and out of pocket expenses the total cost of everything has been $20,000 out of my family’s pocket.  The only relief I have found from a hospital thus far is this wondrous water mug.  It lasts me the whole morning and afternoon and I only need to fill it up once at night for the remainder of the day.  The water droplets glisten off of the morning sun’s rays and sparkle the light  around the house during a hot summer day.  I find nothing more refreshing than to drink from my $20k mug. 

I decided to break my tradition and may continue to do so in revealing the names of the doctors and hospitals that have helped me.  There is no reason to keep them hidden.  They did what they could, and if they could have done more, then they should have.  The only doctor.  I will not list is Dr. Flash, he does not deserve to be mentioned in my blog by name.