Friday, February 24, 2012

Being My Own Worst Enemy

By this point it was March 2010, and my surgeon and my nurses were not seeing a whole lot of improvement to the wound. During one of my appointments my surgeon gave me the instructions to continue using the Dakin's solution except this time she wanted the dressings changed on a daily basis!! I went home from that appointment in a really terrible mood, I mean how could she instruct us to do something that was clearly not working? Then to add insult to injury to tell us to do it even more often?! While I was upset with these instructions I STILL chose not to say anything to her about it other than "oh, okay sure" and then to tell my nurses the new instructions later either during a phone call or at the next visit I had with them.

The visiting nurse and I followed her instructions for a Very short period of time and then, my nurse blew a gasket. The nurse had been seeing me basically since the beginning and she was finally at her breaking point. She had, had it with the doctor's useless instructions and had completely lost all patience. That is when she told me that in her opinion I should go back on the Wound VAC because that was really all that the wound was responding to. This was the nurse that I trusted the most out of all of the different ones I had seen. She knew her stuff and all of her suggestions had been good ones so I agreed that her idea sounded logical. The nurse, however, was unable to put me back on the VAC without a doctor's order. She tried to get in touch with the surgeon to discuss it with her, to no avail. That is when my nurse called my regular doctor to explain the situation. My doctor listened to the nurse and when she was asked to send Wound VAC orders she did it no questions asked. Finally, maybe we were going to get somewhere with this wound, I thought. 

I was on the wound VAC for a about a week when I went back to the surgeon, that is when she saw that I was on the VAC and knew that she did not give those instructions. That is the first time I remotely vented my frustrations and said anything to her about her suggestions not getting us anywhere. The wound was measured and it was suddenly a little bit smaller, I was happy with this news but very cautiously optimistic. I knew that we had a very long way still to go and my gut feeling was that it was going to be a very bumpy road. While I listened to those feelings I still chose to ignore all signs that I should seek a second opinion, even just an initial consultation. I was again continuing to be my own worst enemy. 

My entire family felt turned upside down by this entire situation. While I was not getting myself another opinion despite all the signs that pointed toward needing one my parents were distraught. They were stuck between the proverbial rock and a hard place, knowing that things were not going well and feeling terrible about it, yet unable to give many suggestions because I am an adult and am capable of making my own choices. I also have always hated feeling like people were pitying me, there's nothing worse in my opinion. In hindsight, I guess that while I was the patient they were really going through the entire ordeal right along side me. 

I was not on the Wound VAC very long when the surgeon decided to take me off of it. Again, I was unhappy with her decision but I had sunken back into my shell and would not voice my opinion to her. She then instructed us to cleanse the wound with normal saline and to then use the Prisma all over again, three times a week. That meant I would either have to see her once a week and the nurses twice a week or to see the nurses three times a week during the "off week" from the doctor. Although, we were all unhappy with the way things were going (or weren't going) the nurses and I continued to follow the surgeon's wound care instructions. 

However, by this point we were nearing the end of the year and were running into an insurance situation. My insurance only allows for a certain number of nursing visits annually and we knew that I would not have enough left to get me through the year. That is when my nurse and I called a family member and asked if she would be willing to help out with a few of the dressing changes. The family member is not a nurse, however, she had previously cared for various wounds that her husband had so we figured she could handle it. She agreed to come to my home for the following nursing visit so she could be shown what to do. That all went very well and she did not have any problem filling in for a couple visits, just to get me through the end of the year. 

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