Moving On

Worse Case Scenario – Moving On – 4/20/18

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It was a restless night. I tried my hardest to get sleep, but it seemed the harder I tried to sleep, the farther away it went. My back and my legs were aching, and my constant shifting in bed kept Amanda awake. There was no trying to deny what tomorrow was going to bring. The representative from the company that created my spine stimulator was going to say there was nothing she can do and I would have to have surgery again. My surgeries were almost always a year apart, but this one would be a week, a month, a few months away, depending on the doctor’s schedule. The worst feeling of all was either not having a spine stimulator after having one for over a year, or it was knowing I had a new one in but it did not work. My old device that used to take a little pain away was replaced by a brand new broken piece. Hour after hour went by as I lay in bed. Every possible outcome kept spinning in my head until it felt like a heavy piece of concrete being beaten by a sledgehammer trying to split it. I gave up and went back to my chair, my throne, my prison in the living room and waited.

As the hours crept by, I stared out the window to watch a few of the sun’s rays break over the mountain and dance their way through the sliding glass door into the living room and stop a few feet away from my legs. Tomorrow finally arrived.

I may have gotten an hour or so rest, but I felt incredibly worn down. It was not even 24 hours ago, that I had my 9th surgery . . . and instead of resting to recover, I had a meeting set up in a few hours to determine what went wrong and why my device was not responding. I peeled myself out of my seat and went to the bedroom to change into newer sweat pants and a very large, yet comfortable shirt that would not brush up against my incision. After Amanda woke, it was time to prepare ourselves for our meeting and whatever conclusion the company could come to.

We met with the representative early in the morning. If there was a plus side to anything, it was the fact that she was kind, apologetic, and intelligent. As she walked up to us, I shook her hand and said, “Thanks for meeting with us so soon. Look, I had a Ford Pinto in my back that could barely make it up the hill and you replaced it with a Ferrari that is stuck in the garage needing to be fixed.” She smiled and said that was a good analogy.

She went on to explain that she had never seen this occur before. Out of all tests subjects and new patients that received this device, never had this happened to them. I just smiled back and told her I am the king of “We have never seen this before and I do not know why this happened.” I told her if something were going to go wrong it would when it comes to me. I am just surprised it happened this fast.

She performed a few tests on me with her “master” device – a device that talked to the stimulator in my back to let her know how it was “feeling”. It was no surprise when it turned out that it “felt” just like I did. Broken.

She did not receive any signals telling her the stimulator was connected to my spine. She stated that either a wire became lose, a connector was bad, or the whole device was defective. She apologized again as she packed up her things, and informed us she will get in touch with my doctor again and let me know what to do next. She said they were going to have to perform surgery again.

It was right after this statement a whirlwind of events happened. I can honestly say it was the first time in a very long while I was truly impressed with a surgeon and a company representative.

What happened next was phenomenal . . . exhausting, but phenomenal just the same.

Within an hour after our meeting ended, we received a call from the doctor’s office. They instructed us to come right away to see my surgeon. I was stunned that an appointment was made so fast. Needless to say, I gingerly got into the passenger seat of our SUV and Amanda headed toward his office.

After accepting a few apologies from the admission staff, we were quickly given a room to wait for the surgeon. It did not take long for him to come in and offer another apology. He also stated that he never had seen this before and I retorted back that I am the king of “I have never seen this before”. Amanda chimed in from her seat and said, “Trust me, he is.”

The surgeon went over possibilities of why the device was not working – a bad lead, a bad wire, a bad battery. The worst case scenario would be that he would have to cut down the middle of my back through the old scar tissue and replace the leads, wires, and device. When I heard that, I looked up at him and said, “It will be that one, the worst case scenario. You can start out small by checking the battery and such, but in the end it will be the worst case scenario and I will have to suffer through the pain of having an incision down my back next to my spine.” He tried to assure me by saying we will start out small and hopefully fix it, if not we will keep going bigger and bigger until we find the problem.

I left the appointment shocked and worried. I knew the pain I was going to face if he had to do an incision down my back and another one on the right hand side of my lower back. That was what worried me. What shocked me is when he told me he wanted to do the surgery as soon as possible, and that was the next day! I was stunned that I was going to have two back surgeries almost back-to-back. I couldn’t believe the speed at which both of them worked. Monday surgery, Tuesday a meeting with the representative and then the doctor, and Wednesday surgery. I thought I was going to have to wait months, not less than 24 hours!

Tuesday night I took a sleeping pill and I was able to get at least 4 hours of sleep. When Amanda awoke it was time to get ready to go back to the hospital. All of the usual things were done when we arrived, from check-in, to talking to staff members, and signing my right away to sue (at least I think that is was.) The only difference was instead of receiving local anesthesia during which I felt like I was burning up under the heated blanket, I had to have general anesthesia, which was fine by me.

After being placed under general anesthesia it is difficult to remember what happened a few hours after you awake. The only thing I remembered is the representative approaching my bed telling Amanda and me that I do have the worst luck, and that they had to replace the wires and leads. Something went wrong with the old wires they were trying to use on the new device. Something that they had done 1,000x over. She said this time, it looked like a success.

I lay back down in the hospital bed until late that night when I was allowed to leave with Amanda and to go back home and sleep. I was pleased the unit was working as it should now, and I turned to Amanda as she was driving up the highway and said, “See, I told you and them, it would be the worst case scenario.”

Afterword

I’ve been taking it easy since then recovering. I am pleased to say that after a few weeks went by I made adjustments to the stimulator that do help out with the pain. I do not think anything will take away the pain in its entirety, but any help is better than none. Also, this device gives me a lot more options than my previous one. Best of all, it’s wireless! The old one had a wire attached to a pad that connected to the battery in my back.

I still hope to do other entries as far as product reviews or tips on dealing with insurance companies, but we are now caught up with all my procedures and tests.

Thanks, everyone. Please share my blog if you think anyone can benefit from reading my experiences.

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I want to go into more details about my new device, but wanted to take this opportunity to show everyone what it is. Picture is all of the books that you need to read to understand your device. The belt in the plastic bag is the belt you wear around your waist. There is a pocket in the belt you put the battery in. The battery is the object with the silver circle and the power symbol in the center. To the left is the charger for the battery. The remote is grey and white with a blue LCD display. The remote is wireless which is a significant upgrade to the wire remote I had. i use the remote to control everything from pulse, intensity, and stimulation cycles.

2 Omens and a 9th Surgery – Moving On – 3/31/18

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I am sitting on my chair staring at an almost blank screen, watching the words form from my mind to the screen in front of me – trying to relive the last month and a half since my previous entry. To me it is like a medical television show that spans a few episodes out of the season with me as the patient and star whose case doctors are trying to solve. However, this is my life. There are no do-overs and by the end of the episode, there are real life consequences that have to be dealt with.

On February 6, 2018, Amanda and I had our appointment at a satellite office of the Penn State Medical Center. We were there to discuss the dorsal implant that we had seen on ABC 27 news. It was a new implant procedure and from what we knew it might help people control their chronic pain more than the old implant allowed. I was cautiously excited to discuss what I learned from the program. I remember feeling a bit uneasy that I needed to explain my 10-year medical history with a new doctor, and wondering if he would believe me or not. I came prepared with my medical summary folder I created in case there were any questions. All that was left to reveal the mystery of this new procedure was for the doctor to walk in.

After a brief explanation of my issue to a nurse practitioner and letting her know my current implant was inadequate, I felt pretty good that she was going to summarize everything for the doctor before he got in and was going to spare me having to repeat myself. That was a load off already. Most places I went to I always had to explain myself twice, and when you are trying to cover that much history it can become exhausting fast.

It was less than ten minutes before the doctor entered the room. When he sat down in the little round black leather rolling chair, he looked up at me sitting on the table and stated he saw my chart and understood I went through a lot. Relief immediately ran down my body and most of the tension gripping my insides released its hold on me. The first few minutes of the conversation he was having with Amanda and me, my mind was dominated by the idea that he understood without my needing to explain. Refocusing on the conversation at hand was like getting punched in the stomach and having all of the wind knocked out of me. I went from relief to dread in as little as a half a second.

What was I hearing? The dorsal implant wouldn’t do what? Did he just say that the dorsal implant may help my legs, but it would not do much of anything to help all of the back pain I had? I looked from Amanda to him as if they were in a middle of a conversation and I walked into the worst possible part of the story. This was the new procedure on TV, it had to help me, I can’t go back to lying on the floor in pain most of the day. This was the superior procedure, this was the miracle I needed, just hold on… wait.

“STOP!” I think I shouted, or was it under my breath? I don’t know. I was in desperation mode, the implant I had was not working correctly or not working nearly as expected. “Look. I need help. I spend all day on the floor. I cannot even make eggs on the stove anymore without an extreme amount of pain. This thing…” as I threw my stimulator remote up into the air and back down onto the table, “This thing doesn’t do anything for me. I either have it off or I have it all the way up to the point of electrocution before it blocks any pain. I do not think it is working correctly.” I stiffened up ready to take a defensive stance on the medical device I knew I wanted or needed.

However, I did not have too. The doctor said, “I believe you”. He then stated that the device I have is an older model and that a newer model that had just been approved by the FDA earlier that month is a new stimulator that does the job of two stimulators and that the hospital still needs to approve it. He stated he thinks that will help me more than what I have now and then ended with his opinion that if we can get the back pain under control, he could still do a dorsal implant if my legs were still very bad.

“Oh! Well I do need something different. Something that works. I like the idea I will be one of the first non-test subjects that would get the stimulator implanted. Sign me up!” I exclaimed, a little disappointed that the dorsal implant was not the cure I was looking for, but satisfied that something even newer was going to be given to me. After the mandatory: This surgery will not help you 100%, signing of a few consent papers, and a review of other risks for surgery, I put my coat on and was out the door.

I was pleased overall. I needed help. Lying on the floor in pain with a malfunctioning stimulator was not ideal and he understood that immediately. It was not the surgery to solve everything that I was hoping for, but it was another option and hey, a few weeks before I thought I was out of options. It only took a few days to receive a phone call to let us know that surgery, number 9 if you are counting, was scheduled for 3/12/18. The only thing else that needed done was to wait until then.

March 12 came quickly. It was only a few weeks away and I was more than prepared. To say that I was not nervous was an understatement. The nurse who took my vital signs made the comment that I had the lowest blood pressure of the day, which reinforced the fact of not being nervous, since I have high blood pressure. As I lay in the bed with Amanda beside me waiting for surgery, the rest of the conversations took place between the hospital staff and me. These conversations were almost exactly like the previous ones I had before my other surgeries that had written about. The only difference was the last conversation I had with the head anesthesiologist. I was so used to going through the motions of signing-off on the paperwork, that I was not prepared for the question he asked. He looked between me and my chart on the computer beside him and asked what type of anesthesia I wanted. I looked at him with a blank stare and then looked at Amanda with a blank expression. “What type of what?” I asked. He then further explained that with my surgery he could give me anesthesia in two different ways. The first way was the normal way. Knock me out, spend hours in the recovery room, and when I am ready I can go home. The second way, the option I was never given before, was to only have local anesthesia. He explained with local anesthesia I would not have the grogginess that I hated, which was marked on my chart. I would not feel pain, but I would be aware of all of my surroundings. The advantage of doing it like this is quicker recovery time, fewer complications, and less side effects from the anesthesia. For the first time in 5 to 6 surgeries I was caught off guard. I had no idea what I wanted. Seeing my struggle with the option, he stated he would be back in ten minutes to give me time to think about it. It took the full ten minutes before I made the decision. Amanda stated she would go with the local surgery because I would not need to be in recovery as long and the side effects would be less. Half of me felt she was saying that because she did not want to spend the extra amount of time in the hospital that I would need if I chose general anesthesia. I know now that was not the case, but I had a minute left to make a decision, and I was conflicted. I was never given an option before and I had never been awake during surgery.

The anesthesiologist came back and asked me for my decision. I told him, “Well, I do hate feeling groggy and I was never awake for surgery before, so we might as well make this interesting. I am getting a device that was just approved the month prior and now I get to be awake during surgery.” The mundane nature of having surgery (from my perspective) was taking a turn toward actually becoming interesting.

They literally must have waited for me to make that decision, because once I made it, I was wheeled down the hallway to the operating room. For the first time in a long time, I was feeling a bit nervous and curious how this was going to go. I was more excited to be experiencing it firsthand instead of being asleep. I had all the confidence in the world the anesthesiologist was going to have me fully awake with no feeling of pain. As they wheeled me beside the operating table, I was given further instruction. I was told to flip over to my stomach on the operating table. Next I had monitors attached to me and a blood pressure cuff put on my right arm. I was normally asleep by this time, so it was interesting to be awake during surgery preparation.

With preparations concluding, I was asked if I was comfortable. I told them my skin, due to my condition, is very sensitive to temperature. I asked if they could please put more blankets over my legs and back before we got started. One staff member said they certainly can do that and within a minute a blanket that felt like it just came out of an oven was placed on my legs and another on my back. It felt wonderful against my skin that had been beginning feel like tiny daggers were pricking my skin to the point it almost becomes unbearable. But the warmth from the blankets calmed down my nervous system. The last of the preparation was then put in place – a big blue tent-like contraption surrounding my upper body and head.

Once the tent was in place I was told we were ready to begin. I felt two pin pricks into my back as the local anesthesia was injected. I also felt warmth enter me as medicine filled the IV connected to my hand. As the surgery continued I could not feel anything at all. My legs were strapped down or so I was told, I would not have noticed. I was awake and responsive. I remembered answering questions that I was asked. I also remember not being able to speak loudly. I felt that every word out of my mouth was mumbled. I was also not aware of how much time was passing by. The only minor complication that I personally had was when the surgery was midway, I was beginning to boil. I knew I was mumbling because I told the person who was communicating with me that I was burning. I needed to repeat three times that I was hot and boiling. I couldn’t get out it was because of the heated blankets that were on top of me. I went from being cold, to feeling like a boiling lobster. I was a little panicked that I was going to have to be boiling until the surgery was over. Luckily, I recall someone saying that they thought I meant the blanket. As soon as the heated blanket was removed, I thanked God, as the coolness of the room swept over my upper body, and my panic ceased almost immediately.

The next thing I could remember was being told it was over. Then, like a program coming back from a commercial break, I found myself in the recovery room with my wits about me and no grogginess just like I wanted. I did not feel too much pain. I was given medicine for home, but the medicine they gave me and the anesthesia would keep me pain-free until I was ready for bed. I thanked everyone for helping in the recovery room and all that was left was to meet the representative from Boston Scientific to adjust my device for initial use and schedule a two-week follow-up for further adjustments. She introduced herself and went over the benefits of the device. The tutorial did not take long since I was already used to having a similar one implanted in me. She was swift in making the initial adjustments and was very kind in answering my questions and making tiny tweaks to the setup she gave me to try out.

I was pleased with everything. I had a new device that was just approved implanted into me. Dr. S. was fantastic, the anesthesia team was phenomenal, the representative from Boston Scientific was kind, courteous, and knowledgeable, and the rest of the staff at Penn State treated me wonderfully. However, if you have not been following along on my journey to think this was going to end without an issue would be very naïve.

The first omen happened immediately. After testing my new remote control for my stimulator, we told the nurse we were ready to go. We were given discharge instructions and were told that they would call for a wheel chair for me. Before the nurse made it to her desk, she circled back to my recovery area. She stated that we could not leave until the doctor signed the discharge form. Everything was done, but the form had to be signed. To keep this entry shorter, the doctor’s assistant had to be paged three times and we had to wait until the surgery they were in was over. It took an extra hour and a half before the assistant came back and signed the form.

The second omen happened right after the form was signed. A page was made for the wheel chair. After 15 to 20 minutes they paged for a wheel chair again. My patience was coming to an end, but everyone was so nice it was easier than normal to keep my temper under control. After the 20 minutes expired we were assured the wheel chair was on its way up. I sent Amanda down to get the car from the garage and not more than 5 minutes afterwards, the wheel chair and transporter were there to take me down. I got up and plopped myself into the chair, looked at the transporter and asked him to please get me out of here, so I can go home and rest. Agreeing, he double-checked my wrist band and told me to wait one more minute. Behind me at the desk I heard him talking with the nurse, stating that I was not the one he was supposed to pick up, it was another person who was not ready to go. I screamed, “This is my chair. I waited an hour and a half for a signature, a half hour for a chair, I am not getting up.” During the next ten minutes they figured out that the chair mix-up was caused by a computer error.

Finally, after everything was signed and computer departures were fixed, I was wheeled to the car. After explaining what happened when Amanda asked what took so long, I buckled up and after a long day, we were finally on our way home.

Now you might think that those two incidents, delayed signing of the form and the wheel chair error, were not a big deal – and overall they were not. However, having lived the life Amanda and I have shared, what happened next should have been foreseen. . . .

As we approached home, I got the remote control out to turn on my stimulator. I pressed the button and nothing happened. I figured maybe since my back was against the seat the signal could not get to it correctly. It had to be, right? As we pulled into the driveway, I leaned forward and hit the button again, and again nothing. Dread, known as the Donnagelo Curse, fell over me. I knew something had to go wrong. I entered the house, got the instruction book out, and tried again pointing the remote at my stimulator, and again nothing.

“Amanda!” I screamed, in almost desperation mixed with an uprooting growl of someone who was about to put his fist through a wall.

“What?” she asked.

“It does not work!”

“What do you mean?”

“I mean it fn doesn’t work! I am going to call her (the rep from Boston Scientific).”

I dialed her phone number and she picked up immediately.

“Hey…ummm….my device doesn’t work.”

“What?” she asked, sounding confused.

“It doesn’t work. It worked at the hospital, but it does not work now.”

“Okay, let’s test something”, she suggested.

She had me examine the connections to the device using the remote I had. Green check marks meant that the connection is good. Any other symbol meant it was bad.

As you probably guessed, and to my horror, every single box had a red “X” through it. After a few more tests, she stated, “We’ve never seen this before, even during all the trials. I tell you what. I will meet you tomorrow morning at your home, and have a look at it, and I will start making some phone calls.”

I agreed, mortified something nonfunctional was inside of me.

I told Amanda we will meet her in the morning, but added, “I know fixing this will require another surgery. And now I do not have a working stimulator implanted to help me with the pain!”

I tried a dozen more times that night, each time failing, each time believing and not believing that this is my luck. . . .

Afterword

What I omitted is I also had the first migraine of my life right before surgery. I spent two days with a towel around my head and I just sat in my chair and listened to TV. I was very nauseous and threw-up most of the day. In addition, I was diagnosed with shingles. My first case of it. The only saving grace is I already had and was on pain medicine to help me get through it. I was not cleared for surgery until the day before the operation when the shingles were under control with an antiviral. I was dealing with a lot more than just the surgery.

I also want to say before my next entry that what happened and what happens next is not Penn State or Boston Scientific’s fault. They honestly were fantastic, and I wrote a letter to both companies thanking them for their service. However, it does not mean what happened next wasn’t a tough situation to deal with.

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It has, is, and will be a very, very rough road. However, I also know it could be a lot worse, for starters not having this little lady as my wife would make it a lot worse. Trying to find the silver lining when life keeps beating you down is hard, sometime almost impossible. To me it is important to keep finding it each and every day, it is what gives me the strength to face the pain head on. I hope you can find yours every day to give you the strength to keep fighting your fight the best you can.

The $600 Mistake – Moving On – 2-24-18

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I spent the last year and a half recounting my experiences from the previous 10 years of my life. Recurring themes in my entries were recovering from surgeries, fighting for my healthcare, winning back my freedom, and reclaiming my rights as a patient. It seemed like every year was a new story about the same old problem. As the years went by I had many successes. A few of these successes included having an insurance company reprocess all of the claims from 2015, which resulted over $700 in refunds; having denials overturned for prescriptions; overturning medical testing denials; and fighting for my freedom by successfully passing a driver’s test for using hand controls to drive. Having gone through all of these trials, I learned that no one will fight for your health care and rights more than yourself. As health care options to help me feel better were winding down, I found solace in knowing my fighting with the healthcare industry was winding down as well. It took a lot of energy and fight out of me. As the pain continued to get worse throughout these last few months I had less and less drive in looking for additional medical alternatives that could help me. This led to the decision of accepting my fate of relying on medication and lying on the floor of my living room in order to keep the pain down. Overall, it did not feel like I won so many battles since I was worse off than when all of this started a decade ago, but deep down I knew that wasn’t the case. I also accepted that my story did not finish the way I was expecting it too. I thought it was going to end with the cliché of “… and he lived happily ever after.” However, this was not a fairy tale, it was real life, and in real life a lot of the things you wish for do not turn out the way you want them to. But, hey, I gave it a hell of a try. As long as my blog entries reached out and helped at least one person and encouraged fighting through all of the denials insurance companies can deliver, it was all worth it. Others could have a more positive outcome than mine.

Alas, after a decade it was finally finished. The surgeries, the fighting for medication approvals, and the endless search of medical options was over. The doctors agreed I had done everything I could have in trying to help my body fight Complex Regional Pain Syndrome and the other health issues I had. In the month or so afterward, I went into automatic pilot mode. I woke up, did as much as I could before the pain took over, took my medication, refilled my scripts, went to sleep, and did it again. Day after day was the same with some minor differences. I might have had a follow-up appointment to go to, I may have had a day with less pain that let me leave the house for an hour, and if I was super lucky I may had had a visitor stop by, though visitations were getting fewer and farther apart. In the end it was: wake up, take pills, order them, play a game, study Korean, and then go to sleep. It actually felt good not to worry about anything else or stress over having other medical options approved. This was life and though it was not much, it was mine and I adjusted to it. A pain-filled life, but free of stress from other influences. Hey, it could have been worse. At least that is what I kept telling myself.

It should have not been surprising when this complacent way of life came to a halt rather quickly at the end of January 2018.

It all started when I logged into my prescription company’s website to order a three-month supply of Lyrica. In November the prior year the cost was $99 for three months. I knew the deductible of $450 reset and that Lyrica afterwards was $100. I knew it was going to be $550 plus tax for one drug for three months. However, this medication did help, so I knew it was worth it. I proceeded to press the refill button and then the checkout button. The price was around $600, I figured that was right and I would review the information after I put my payment option in and before I hit complete. I had my credit card ready and Amanda’s new health savings card with $500.

As the payment screen glared at me, my eyes kept searching through the web page. I thought I was missing it, but I knew I was not. There was no option to pay with two credit cards, only one. I wanted to use the health saving card and use my other card to finish the transaction. With a sigh and a growl that would have scared off a 100 lb dog, I began to dial the customer service number. Oh, how I hated calling companies. My dad, who is computer knowledgeable, was still old school in dealing with companies. Whenever he wanted information, to place an order, or file a complaint he always called the company. He still tells me to call a company to get information when I am helping him with something. I have to keep reminding him, that I do not do phone calls where people can screw things up. I do everything on the internet where I can save what I am doing and have proof of what I had done. However, this time I had no choice.

Within a few rings I was greeted by an annoying recording saying, “Thank you for calling (pharmacy name). For English press 1, for Sp. . . .” I quickly pressed one. It proceeded to the next menu. “If you’re a member press. . . .” Beep. I pressed 1. “In a few words please. . . .” “Customer Service!” I yelled, hoping that somehow it would recognize my tone and put me right through. “I’m sorry the respons. . . .” “Customer Service!!” I screamed louder, already annoyed. “I’m sorry, the response was invalid.” She mocked at me over the phone. “Oh God! I hate this!” I exclaimed in such a dramatic fashion I swear I could have won an Academy Award.

“If you’re calling for a refill of a prescription press 1, if your calling about a recent order press 2. . . .”

“1!” I thought, good thing the windows were closed so the neighbors did not hear me. My blood pressure was starting to rise and my temper was getting short. I hated the phone. I hated talking to companies on the phone, and I certainly hated talking to companies on the phone when I should have been able to do something on their website. “If this is a refill please have your RX number ready and press 1. . . .” “Representative!” “Alright, but before transferring you to a representative please state your member ID follow by your birthdate.” Thank God, I thought. I quickly stated the information and heard the delightful message that I was being transferred to a representative.

To my surprise it only rang twice, and even better, a delightful, young, cheerful, voice greeted me. “Hi Douglas, thank you for verifying your information already, how can I help you?” The voice reminded me of a bank co-worker named Stephanie, who had a very pleasant voice over the phone even when giving customers not-so-great information about their denied loans. “Hi, I need to reorder my prescription for Lyrica. I was on your website and there is not an option to accept two payments. I want to make a payment with my health savings card and my other credit card. It will be around $600. This includes my deductible and the 90-day supply I ordered. The same one as in November.” She quickly responded, “Okay, I understand. You want to use two different payments on Lyrica, OK, let me bring it up.” Customer service 101, I thought, repeat the question back to the customer to ensure understanding, not bad, not bad at all. “Hmm . . . Mr. Donn. . .Mr. Dongelo. . . Douglas, sorry. I do not see where I can use two payments.” “It’s OK, Doug is fine. Yeah I was on your website and I did not see it either. I think it would be dumb if your company did not accept two different payments.” “Yes, there should be a way. Do you mind if I put you on hold and ask my supervisor?” “Sure. Not a problem”, I answered back.

I was a little shocked this had not come up before, but hearing how cheery she was, I kind of assumed she might be new and the life of a call center employee had not crushed her spirits yet. (I’ve had first-hand experience with that.)

After a few minutes she came back on and stated, “I have a solution. My supervisor said use one card and put a credit on your account and do the same for the next”, she continued after processing my information. “Okay, so that is Lyrica for $580. I will process that right away and that will be delivered within a week.” “Awesome, as long it is like the last script. I appreciate your help.” “Thank you Douglas. If you have time can you please fill out the survey after the call?” I thanked her and filled out the survey. I gave her five out of five stars. All I had to do now was wait.

Less than a week passed before the package was brought inside by Amanda when she came home from work. Amanda opened it and yelled from the kitchen, “Hey, you only received a 30-day supply! It says bottle 1 of 1.” “What?” I mumbled through a daze of muscle and nerve medication. “Your $600 Lyrica is only a 30-day supply!” Sobering up a bit more, “What! You’re kidding? I told them to refill it like they did in November. I knew something was going to be f’d up when I had to call them. Give me the damn package.”

Before Amanda even reached my chair to hand me the package I was flying through the prompts that I called almost a week before. Within a few minutes I was greeted by a call center representative. I was wondering if the other end of the call was being answered in the U.S. or abroad since I was calling after 6 p.m. “Hello, Mr. Drangelo…”, I interrupted. “Yes. Last week I called. I spoke to a nice representative that placed an order of Lyrica. It was a refill from the original order in November for 90 days.” “Okay let me see. I see the order. It says it was for a 30-day supply.” “No”, I stated abruptly. “I told her it was like my last order in November. A 90-day supply. $450 deductible, than the rest because of it being a name brand.” “Let me bring it up.” I heard the clacking sound of a keyboard through the phone line. I knew it, something had to go wrong, I hate calling companies, I said to myself, my blood pressure on the rise again. I thought I was done with this shit. “Okay Douglas, I see $450 was the deductible and then $200 for a 30-day supply”, he responded. “Noooo. . . they charged me $600 and as in November it was supposed to be a 90-day supply”, I said in a forced calm tone. “If that is the case then we saved you $50.00″, he quickly stated. “You saved me $50.00?? You charged me $600 for a 30-day supply instead of the $90 for a three month supply like in November. How is this saving me $50.00?” Amanda came into the living room and listened to the conversation that was on the speaker phone setting. I could see she was getting upset, realizing we just spent $600 on a 30-day supply of Lyrica. Our anger was compounded by the fact the person on the phone was not understanding what I was saying. “Look, we processed your refill for you and the cost here says it is $250 a month.” I stated in now a completely frustrated tone, “Your numbers are not adding up or making sense. If my deductible is $450 and the bill is $200 that would be $650, I was charged $600 and unlike the one in November it was for a 90-day supply .” “Yes. We must have saved you $50 since we only charged you $600 instead of $650.” “Okay, even if the 30 days was correct, why would you give me a $50 discount for nothing? Do you just go around giving $50 to people like Oprah? Can you please tell me the difference between this order and November’s order?” “I already told you. It was your deductible for the medication and the cost of the rest”, he replied back, almost as frustrated as I was, but he was not the one being charged $600! The very next image in my head was one of Jackie Chan and Chris Tucker in Rush Hour. I said, “Sir? Do you understand the words that are coming out of my mouth? Please put your supervisor on.”

“Okay, let me transfer you.”

The supervisor picked up after a few minutes. “For the love of God. Can you please tell me the difference between the November order and this order? I was just charged $600 for a 30-day supply, after deductible that is $150 a month or $1,800 a year. I do not have $1,800 a year to spend on one drug when last year it was around $90 for a three-month supply.” “Okay, yes that is a lot for one medication for one month. Let me find out what is going on”, the supervisor stated. He then put me on hold.

It was then I realized, without looking anything up, what happened. The drug changed from Formulary to non-formulary this year. I thought this happened due to the drug being so expensive. I told Amanda this and I said, “Cheap bastards prefer to cover generic medication and I bet they removed most drugs from the Brand Name List of covered drugs.

Sure enough, that is exactly what happened. He came back on the phone and stated that the drug came off the covered list. I quickly referred to my phone call when I ordered that I specifically stated I needed the drug like it was in November. I added the employee stated, “Yes it will be”, and then ordered it for me. He concluded the phone call by stating, “Give me a week, Douglas, and I will personally take care of this for you. I would be upset too if I was charged $600 for a one-month supply. This is in my hands now and I will take care of it for you.” I thanked him for his time. It was not his fault, and he grasped the situation. I asked for his direct line, which he gave me. In an exhausted tone I thanked him again for his time, and hung up.

Two weeks went by. I heard nothing. I was not surprised. Disappointed, but not surprised. I silently cursed the company under my breath as I dialed his phone number. His direct line with no extension was another number for the automated system. I was fuming. I proceeded to hit a bunch of buttons until someone picked up.

After verifying my information and going over everything that had happened, the gentleman on the line apologized for everything and stated he would look into the complaint. “I see where your contact said he was going to handle the matter and was going to fill out a complaint. However, he did not do any of this. I do not see one form being sent out.” “REALLY! I guess that is his way of personally taking care of things. Did he think I was not going to call back and fight the claim? I was just going to let it go?” “I am not sure. He is in the office today. I could transfer you.” “No. He did not do the job the first time after making one promise after another. I am not trusting him again. I want you to handle it.” I replied. “Okay. What I am going to do while you are on the phone is put in a Medicare grievance. It is your right to file a grievance anytime you have an issue or you think something was done wrong. It is possible that your rights were violated twice. Once by the order not being correctly filled the way you thought or asked for, and then again when your complaint was not filed. I will give you my name and number and before we hang up I will give you the number for the grievance department. However, in two days you will receive a phone call to follow up on your grievance.” I thanked him profusely. It appeared like he knew what he was doing and he seemed genuine about what I needed. It may not have been true, but he acted like it. I filled out the survey for him giving him 5 out of 5 stars.

When two days passed I did receive a phone call. A case manager from the grievance department heard everything I had to say and stated she already listened to the recorded phone call and the gentleman I had my first grievance conversation with. She stated she did hear him state he was going to handle it and that he was going to be reprimanded for not filing a grievance. She said this was a big violation because this was going against not only the company’s policy, but Medicare’s. She did say she had to listen to the original conversation between the woman and me. She promised to call me back next week, since it was Friday. I said OK and was pleased I was making headway, and that the third guy I had talked to actually followed through with his promise.

The next week I did receive a phone call. She apologized three times and told me I was getting all of my money back and I could keep the medicine. She stated that the woman on the phone said it was going to be the same as my November order which was a 90-day supply. She added the she violated Medicare policy as well. She violated it by not stating the milligrams, duration, quantity, and how many days the supply was ordered. Amanda and I were very thankful for her willingness to follow through, and within a few days the refund for $600 was posted on my account.

I did find another drug that is working almost as well as Lyrica which is only $9.00 for a three month supply. A huge difference in price. I wanted Lyrica because I knew it helped, so I did not mind spending the extra money last year. And even though it is not as effective and I was just told by my doctor to double the dosage on the replacement drug, I am satisfied knowing I will be saving a ton of money from this point forward.

Hanging up the phone, I looked at Amanda. We were both frustrated by what I had to go through, but we were glad it was over.

I turned the volume on the television back up and about that time a news promo came on stating that tonight they would be interviewing Penn State Medical Center doctors about a new device that will help chronic pain sufferers. I looked at Amanda with a huge smile and kept the cable tuned to the channel . . . .

Afterword

What was a five-minute conversation with the initial woman representative turned out to be almost a month-long ordeal for me to fix. (I saw this a lot working at the bank. An example would be a teller making a quick deposit mistake that took a manager a week to fix. It may take an extra second to verify what you are doing and people in line might get impatient. However, a mistake found early will save everyone time.) Maybe I should have verified the quantity with her, but I did state the same thing from November, which she checked. If she would have done her job and reviewed everything I would have caught it and the problem would have been solved then and there. In the end she will learn of everything I had to go through because of her oversight. But once again I was concerned, thinking about people who don’t fight for their rights. I know people who would have just let it go and would have been out the $600. I thought the fight was over, but I now know that my fight for my patient rights will never end as long as I am on this Earth.

I also want to cover three more points that I posted on Facebook, but I think it would be best if each point would be covered in its own entry. I really want to help people learn that the health care industry is so busy and filled with overwhelmed employees that they will not give you the extra time you need to make sure everything is okay. You honestly need to manage them as if they were your employees, to make sure they do set that time aside for you.

If you read this whole thing I truly appreciate it. I wanted to drive home the point in double checking everything and fight for every dime that is yours and every procedure and medication you need.

The next entry will be soon and shorter. I will cover a day in the life of having CRPS.

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Here is the invoice. I erased personal information besides my name. I was shocked when I only received a months worth of pills.
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I do not know where I would be without this amazing woman. A painful day on vacation, but 100% worth it to be there with my wife.

Hope, Keeping Hope, Scared of Hope – Moving On – 1-13-18

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Most of the blog entries I have written were stories about my life.  The entries covered the events, adversities, and obstacles that I faced throughout my journey.  In this entry I want to talk about the emotion of having hope.  I want tell about the emotion of hope and disappointment and the tug of war battle that has plagued my mind since my story started almost nine years ago.

It took over a year for me to summarize the last nine years of my story in my blog.  I want you to stop reading this and take a minute and think of all of the events in your life that have taken place over the last nine years.  I know many people have had children, changed jobs, bought a house, moved out on their own for the first time, gotten married, and even gotten a divorce. I want you to think about all of the events and all of the times you had hope, happiness, and sadness.

In the last nine years, I had one dominant thought in my brain.  One emotion throughout all of the years in my 30’s.  That thought was: Hope.  I was hoping to find a cure. I was hoping that eight surgeries would give me relief.  I was hoping when the doctors told me during the first four surgeries that I would be 100% afterwards, that I would be.

I had a lot of experiences during that time. I went on trips, embraced new friends in my life, even a few recently that live overseas in the UK.  However, during all of these events my hope dominated my feelings.  I used my hope and determination to squash the disappointment of the results I bore. The disappointment of learning the doctors were wrong.

I battled time and time again to increase my strength in my legs, feet, and back in order to walk without pain.  A year would pass between surgeries until I would know if I was healed or not.  After each of the four recovery years I carried the weight of being disappointed when I felt the pain coming back stronger and stronger each time.  Hope helped me push back the weight of disappointment when the next four surgeries failed even though I knew they had a lower percentage of chance of helping me.

It was hope that kept me going when I would have good days – days where the pain was a lot less.

Days where I could do things and feel that I was getting better gave me more hope.  That was until the next day in which my body would scream at me from the inside because I had pushed myself too much during those good periods.  Days when I succumbed to the pain and lay on the floor for a week in hope of getting rid of the pain that gripped my body.  It was during those days that hope of getting better started to flicker out of my life.

It took months of struggling with myself to adjust my thought process, and help from my friends to redirect what I should be hoping for. Instead of hoping for a cure, I learned to appreciate the good days.  Instead of becoming depressed when my good days ended and were followed by bad days recovering from over-activity, I learned to enjoy the days where the pain was less.  I did not push myself harder on the good days. I stuck to the same routine and relished the fact that that day was almost a pain-free day and I hoped that I could have more of them.

If I did not adjust my outlook on life and change my goal, I knew I would be battling disappointment the rest of my life.  Over the last few months I became resigned to my situation.  I survived through the horrific days, I cherished the days where the pain was less and I kept hoping that life would stay about the same and not get worse.   It was not much of a life, being in a lot of pain everyday.  But it was the best my friends and family, doctors and I had to offer . . .  so I decided to make the best of it.

Months passed where each day felt like the film Ground Hog Day, and that was fine.  No more surprises!  I preferred that after years of not knowing how I was going to feel or how my body was going to end up after surgery.  Days without surprises and keeping my hope in check were just what I mentally needed. I felt resigned even though there were days I had crippling pain overwhelming my whole body.

Tolerating my situation lasted a decent amount of time.  That was until two days ago.  I was lying on the floor for pain relief, and turned on the news.  On ABC 27 they stated they were having a special in a half hour that would cover a new procedure. A new procedure for people with Complex Regional Pain Syndrome!  A new spinal implant procedure for people with this condition that had leg pain or ankle pain from multiple fractures!!  It was as if they pulled my medical record out, were reading it, and sharing how the new procedure could help me.  I had never seen anything on TV about my condition let alone a new procedure.  I turned to Amanda who was sitting on the couch, and pointing to the TV like a kid pointing at a new toy being advertised for Christmas, I yelled, “I need that! One please!  Crack my back open, connect wires to my brain, I don’t care – give it to me!”  Even Amanda was impressed by it, which is not easy to do, and stated, “This might really help you.”

The news program was offering a phone number and an email address that people could use to contact the doctors.  I instantly grabbed my phone and wrote a page about my condition.  It took less than ten minutes for them to get back to me stating that they could help me.

At that moment fireworks were exploding inside of me.  My feeling resolved once again bloomed to having hope of a cure.  It was the first time in a very long while I was completely happy and looking forward to the future instead of hoping for the next day to be less pain-filled.

The following day Amanda called their office and secured an appointment for the 6th of February to talk to them about this new procedure.  She then called me, during a break from work, to let me know the date of the appointment and told me to let my dad know, knowing he would want to be there too. I started having instant regret letting my emotions rise and having hope once more.

As I sit here typing this, once again I am excited for the future.   I did not want to set myself up for disappointment.  One of my close friends in Virginia played devil’s advocate, saying the procedure might not be approved or good for me.  She asked, “What if it makes you worse?  What if the pain is unbearable like last time?”  Her questions were on point.  However, I could only answer with excitement.  I rattled back, “At this point let them cut me up and keep trying.  Something has to be better than this. I don’t care, I have to try it!”

After spending months and months retraining my brain to adjust my expectations, I am setting myself up for another huge case of disappointment.  It was something I did not want to go through again.  I did not know if I could survive going through it again.  For the first time, Hope has me scared, and I wish I did not feel it.

I would love to know your thoughts.  I would love for you to respond to me in the comments section.  Would you have hope, if so would you keep it in check?  How would you keep it in check?  Would you take the risk of setting yourself up to be hurt and in pain even more after finally accepting your condition?  I am going for it, would you?

 

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It would be amazing to go back to being this guy.  Two days before all of these events took place.  Two days before an ankle would give out walking back to the hotel.  I can’t hope to regain the last nine years of my life I spent looking for a cure and going through an onslaught of operations, but I can hope to feel like him once again.

Here and Now – Moving On – 12.29.17

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It has been a long time since I wrote an entry for my blog.  As I approached the ending of Story Part 2 in September, I was feeling emotionally exhausted.  Before I wrote each blog entry I used to sit in my chair and remember as best I could about each experience that I was typing about.  I mentally lived the last 9 years of my life in one year’s worth of blogs.  If that was not enough to drain the remaining mental energy that I had, the fight to live without pain seems never-ending.  When I started the blog, I honestly thought I would not be having pain by this point, or at least not as much.  The happy-ever-after fairy tale ending I hoped for was being torn down by the reality of life.  As the last entry was posted, I was worn out physically from my disability and mentally form living and reliving my life.    I am now ready to move on and continue to keep sharing my tale. . . .

The remaining days of September, and October and November flew by in a blur of appointments, increased severity of pain, muscle spasms and twitches, and planning for a holiday vacation with the family.  After all of the surgeries, procedures, and implants, the pain had not stopped.  In fact it was as if a beast inside me kept growing, trying to take over every aspect of feeling that I had.  Everyday I found myself lying on the floor to help lessen my back pain.  My daily cocktail of 15 pills did not seem to help.  The pain increased (continues to do so) and interrupted my sleep.  At this time I had been sleeping only about 2 hours a day.  If I am lucky enough I can go to sleep for 2 hours, than wake up for 2 hours, and then finally go back to sleep for another 2.

Over those long months I felt I had only one choice.  I had to give it one last effort.  I made an appointment with a new spine doctor and a new neurologist that specialize in pain management and Regional Complex Pain Syndrome.  I remember waking up the day of the appointments asking Amanda what she thought the outcome was going to be.  I should have sensed it, but at the time, a person who is desperate will see what he wants to see.  Amanda looked at me and stated, “Maybe it’s worth a try”.  Though her words contained a hint of optimism, looking back I should have noticed the eyes that went with those words.  Those eyes had no hope – as if the lights had gone out in a long highway tunnel that blocked out all the light.  At least, that is how I remember them now.

However, I didn’t notice her eyes, I only heard what I wanted to hear. To me I had no choice.  It was my last chance to get any help besides medications, shots and implants.  I have no idea what options were available, but hey, I had read an article about doctors trying to do a brain transplant.  If they could some day transplant a brain, maybe Penn State researchers were working on something for the nervous system.

We arrived at Penn State Medical Center and already knew where we were going due to all of the other appointments we had there.  The staff was extremely courteous and the resident that came into the room first was amusing.  After spilling my guts to him about everything I had experienced and how much pain I was still in, I lay back down on the table and waited for him to respond.  He smiled at me and said, “Wow.”  I stated back, “Yeah.”  He apologized for everything I had gone through, and to me it seemed really sincere.  He stated he would go over everything with the doctor before he came in so I did not have to repeat myself.  I told him that I was very thankful and that I will see him in a day or two.  All three of us laughed.  My disability has taken 80% of my life away, but it will not take my humor and laughter from me.

The doctor entered the room and rehashed very quickly everything I said.  I was pleased that he grasped the situation so fast.  He sat down, and performed some tests on me and he endorsed the diagnosis of Complex Regional Pain Syndrome, he agreed with all of the medication I was on, and stated I may need more pain medicine as time passes.  He shared the opinion of my other spine doctor, that he could not perform any surgery to help me.  He stated the risk/reward is too greatly tilted on the risk side.  This is due to cutting into my nerves again and aggravating my syndrome.  He also stated that he saw the severe arthritis on my spine and bulging disks.  He added that I was doing everything he would have recommended.  The only option that he offered that no one else had was another type of injection.  However, after doing some additional research on his computer in the room, he turned around and stated it would conflict with my spinal implant and could cause death.  We all agreed immediately that was not an option and the implant would serve me better and to leave it in.  He apologized for not having any good news.  I thanked him for his time and told him I am used to it and not to worry.

When we arrived home I felt very different.  I can usually shake off getting bad news at appointments, and start researching my next appointment or avenue.  The difference this time was that there was no path.  After all of the years that had gone by, all of the procedures, all of the medication changes, it was now finished. I sat on the floor in pain, drowning in the realization that this was truly my life and a cure was nowhere in sight.  It hit me harder than anything that came before it.  I was so used to holding on to hope, holding on to the next appointment, the next procedure, my next idea. . . but there was none.  There was nothing, all of my efforts had ended in failure.  This was the exact opposite of my intentions for my blog. I wanted to find a miraculous cure, I wanted to say, “Hey, if you put forth the effort, good results will come”. I wanted to tell everyone do not give up.  If they can fix me, they may be able to fix you.  But this was reality.  It wasn’t a movie with an ending I can write myself.  I spent a year telling my story, and now the ending is not how it was supposed to be.  My pain is not gone like it was supposed to be.

Thoughts like those kept spinning around in my head.  It took a long time to snap out of it, even just a little.  I honestly still am not totally out of it.  I stopped talking to a lot of people as I processed the feelings inside of me.  Sadly, some of those people stopped contacting me because I stopped initiating communication with them.

I contacted some of my doctors and cancelled my follow-up appointments.  Many were simply to see how the drugs were affecting me.  I figured since the ideas have dried up, I can have my neurologist control all of my drugs.  I thought it would be best to have one specialist overseeing all of my drugs rather than having them supervised by a bunch of them.  It would also be less stressful for me not to go to so many appointments. I was happy to hear my neurologist at Holy Spirit shared my opinion.  I like him a lot.  He and his staff and office employees are wonderful.  They truly care for me and want the best for me.  He also prescribed a sleeping pill for me a few days ago.  So far it is not working, but I have to wait a week before it takes full effect.

That is what I have been up to these past few months.  It has been a rough, unexpected road.  My condition makes it difficult to type, as sitting up is hard on my lower back.  It will take me a long time to write each entry.  I plan on writing about other things soon as well.  Maybe movies, what I been enjoying, how I’ve been keeping positive this week.  I still believe being happy is the true cure for everything, and I want to share how I do that in hopes that others will read it and get an idea on how they can overcome their situation and be happy as well.

I hope everyone will have a good New Year.  My next appointment will be in a few weeks.  Take care everyone!

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B-E-A-R-S   B-E-A-R-S   B-E-A-R-S BEARS BEARS BEARS WHOOOOOOOOO!!!!!  A local hockey game Amanda and I go too.  I use to go twice a year, but since my activities have become limited we might go about ten now.  I am trying to adapt my interests.  While I have to leave some hobbies behind I am trying to increase the ones I enjoy.
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There is no better than this woman right here.  She has been helping me for years.  Amanda is the best wife I could have ever asked for.