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Become Your Own Medical Advocate

Updated on January 24, 2017

New year

Old year passing into a new year.

As the first month of 2017 ends, I’m finally taking time to reflect on 2016 and the first part of 2017. The first few months of 2016 took several famous artists that we’ve all grown up with who were influential in their fields and some even crossed over from other disciplines to have a significant impact in multiple fields. For the less famous, like myself, 2016 was a mixture of good and bad situations. Because of some of the bad situations, I’m quite thankful to be alive.

The surprise of heart surgery

On September 13 of 2016, I had open heart surgery. Thankfully I did not have a heart attack, just symptoms that were leading to a heart attack, but because it was caught early, I don’t have any heart damage, just had to have a double bypass. My husband who tends to let me have my way, put his foot down, came to my job, and picked me up saying we’re going to the doctor at Indian Health, which then transferred me to a different hospital that had the means to treat me. I was then admitted to that hospital and a week later because of trying to get my diabetes under control, I had the bypass.

I was told all the risks and complications that could happen. My risks of infection and death were higher than others because of family history and uncontrolled diabetes. I made it through the actual surgery no problem. I was released to go home a week after the surgery, and followed the instructions that the doctors gave, but during the time that I was at home, I developed a very nasty infection and became septic. Once again, my husband put his foot down and around October 11, took me to the emergency room at Indian Health where once again I was transferred to a different facility that could treat me. Per the specialists that had to be called in, had I waited as I wanted, there was a good possibility that I would not have made it. While in the hospital the second time, I went through three more surgeries to clean the incision site from the inside out, and to do what is called a pectoral flap, where they take part of the pectoral muscle and use it to help close the incision/wound.

Again, I was given instructions which were followed to the letter, I even had a home nurse coming in every day to assist with the changing of the dressings. I had IV antibiotics that my husband administered through a PICC/port line that was still in my arm, through the PICC/port line, blood was to have been drawn to monitor whether the infection was being affected by the antibiotics or if the antibiotics were needed to be continued longer. However, the infectious disease doctor did not follow up by requesting blood work, so as far as everyone was concerned, there was only enough antibiotics sent that were to be administered through the given date which was a few days before Thanksgiving. Since the infectious disease doctor never followed up, the PICC/port line was removed, and no further antibiotics were given and all seemed to be progressing as it should until the end of December.

More surgery

The last week of December, I developed an abscess that burst about five minutes before my home nurse arrived to change my dressing and she put a dressing on the abscess area and then sent me off to the emergency room. So back to Indian Health I went, even though I had been there at least 3 other times in November and December due to extreme nausea, the blood work came back with some infection, I was given antibiotics and anti-nausea medicines then sent home. This time I knew I would be transferred to hospital because of the abscess. So, on December 30, I was admitted to hospital for the third time and in the first two weeks of the new year 2017, I had two more surgeries.

The first surgery of 2017 was to clean out the infection site and with cultures taken to make sure the infection wasn’t in my bone or any previous work that was done, which thank the Creator it wasn’t, it was just in the soft tissue. The second surgery was to use breast tissue and another pectoral flap using the pectoral muscle to help close the wound.

Lessons learned

The third time around in the hospital, I didn’t just blindly let the doctors do what they told me I needed. By the last go around in the hospital, I had learned my lesson. I asked questions, found out why they wanted to do the procedures. I voiced my opinion about my lack of faith in the infectious disease doctor’s abilities, due to not following up with blood work after the second time in the hospital. It’s quite possible that had someone been monitoring my blood work as they should have been, the third trip to the hospital would not have been necessary. But because of the lack of follow up from the doctor, we’ll never know the full answer because the first infection could have been eradicated, and the second time around was a separate incident.

I have learned that in today’s medical world, we need to be our own advocates. If a doctor has said they are going to be doing something, no matter how simple, we need to ask why, or hold them accountable to do what they said. Doctors are not infallible, they are humans also, and unfortunately there are some that get a God complex, and this God complex tends to become more pronounced when the doctor specializes in a certain field. It is our job to find out what is being done to us or to our children, understand what is being done, and remind the doctors that they are human if necessary. If you don’t understand something the doctor’s have said, then do not hesitate to talk to one of their case managers who would or should be able to explain things in layman’s terms. The case managers also help with insurance questions about what is or isn’t covered.

Moving forward

Right now, I’m still healing from the last surgery, but from what the doctor and my home nurse has said the “wound” as they call it, is healing well, with everyone being cautious because of my history and even though my diabetes is under the best control it’s been in years, I’ve become one of those people who are prone to infections. With the lessons learned, not just from the medical ones but to others more personal, I know I will move forward with a more positive outlook and a more educated one as well.

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