As many of you know, I recently had a defibrillator installed. This was in response to a heart attack I suffered the last time I went under the knife. Now I have lost the use of up to 20% of my heart, but, as they say, there is no point in crying over spilled milk. What I do take issue with is how medical companies are taking advantage of people like me – the disabled and severely ill.

I want to tell you a story of a company that is gouging patients who have no other choice but to use their service. I won’t mention the company’s name for legal reasons, but I will fill you in on the details. I’d like to be able to say this was the only instance I have come across in my 25 years of R.A. where a company has tried to take financial advantage of the ill. Unfortunately, I cannot make that claim, as this is only the latest instance of gouging I have experienced.

Most people have three major veins that carry blood to the heart. I only have two – it’s a condition called left-dominant circulation. Because of this, my heart is more likely to develop an arrhythmia, which is just a big word for an irregular heartbeat. In order to reduce the chance of me dropping dead due to this phenomenon, I had an implantable defibrillator installed.

The ICD, or Implantable cardioverter-defibrillator, was surgically inserted into my body just under the skin on the left side of my chest. The unit monitors my heart and once an arrhythmia or irregularity is detected, the ICD goes into action. First, it will attempt to speed up my heartbeat so that the pulse can be normalized, and then gradually reduced. If all else fails and the ICD cannot get the heart back under control, then it administers a shock. Now, this isn’t a shock like you get when you rub your socks against the rug. The shock is equivalent to what an EMS worker uses on a patient (the device used when someone yells “clear!” beforehand). This can be uncomfortable to say the least. As a friend of mine put it “it feels like a gorilla punched me in the chest!”

Once I got the defibrillator installed, I learned of another very useful feature. The unit keeps a record of all the stats of my heart for a six-month period — pulse, instances of arrhythmia, EKG info, etcetera. The device can even be sent new commands that will alter my heart rate if the correct code is entered. When at the hospital, the nurse simply places a wand over the device to communicate with it. At home, though, in order to send the doctor a “download,” it’s a bit more complicated.

Any ICD implant procedures comes with a package of gadgets. The package includes a blood pressure cuff, a digital scale, and the unit that the cuff and scale report to. This reporting unit plugs into the phone line, and it can wirelessly obtain the information from the defibrillator any time. Yes, I’m now Wi-Fi enabled!

Once the info is obtained by the unit (at least once a month), the device dials a phone number and dumps the information to the doctor. This home monitoring serves two purposes. First, the doctor can monitor the patient for any life-threatening issues right from the comfort of his or her office. If any changes need to be made or the patient is in peril, the doctor can call and inform the patient to make an appointment. Secondly, if the patient has an episode or even if the defibrillator administers a shock, the doctor can instantly see exactly what caused the event, and let the patient know if their life is in danger. Most times, if the event is isolated, patients do not even need to go to the emergency room. Overall, it is a valuable tool for the doctor to have that can minimize the impact on the quality of life of the patient.

Last week, I visited the doctor for my six-month ICD check-up. When I arrived at the hospital and made my way to the exam room, the nurse immediately placed the wand over my ICD and downloaded the info. She then asked me why I hadn’t hooked up the home monitor yet. Confused, I told her that I had hooked it up five months ago. She thought for a second, and then asked me “do you use voice-over-IP for your phone?” I said, yes, of course I do. I don’t even know anyone who uses a landline anymore. The nurse then informed me that the home monitor does not work with VOIP. Because of this, I’d need to come in every three months for “downloads.” Well, I was fit to be tied, but since it wasn’t the nurse’s fault, I waited until I got home to call the manufacturer of the device.

When I did eventually get the manufacturer on the phone, I asked them how they could make a device that only works with technology that was being phased out three years ago. I even looked into getting a landline at my home and was told that there were no companies offering “obsolete technology.” The manufacturer of the home monitor told me I could purchase a cellular phone adapter for the device. I said “what choice do I have?” They then informed me that it would be about $15 dollars a month and I had to sign a three-year contract. In addition, just like a cell phone plan, there was an early termination fee. Flabbergasted, I said I thought it was criminal that I would have to pay almost $600 dollars out of pocket in order to make sure that my very life was not in danger each and every day! They simply told me again that the home monitor did not work with a landline and that I’d have to find a hard point to hook it up to. I told the representative that I had a “hard point” for her and hung up.

This is a classic example of how disabled and ill individuals are being gauged by medical equipment and pharmaceutical companies each and every day. I have dealt with this issue many times before. Individuals such as myself already have to deal with horrendous medical billing that ruins our credit and insurance companies that don’t allow us to have the medication we need to live without jumping through ridiculous hoops. All we can do is spread the word to the people in power so that some of these practices can be outlawed. Making me pay a monthly fee in order to make sure I’m not going to drop dead without warning ostensibly amounts to extortion. If you have experienced something like this yourself, e-mail me and let me know so I can help to spread the word, and, above all else, keep fighting the good fight!