Speak Up for Yourself

There is something I need to talk about today and is geared to both those with FTD and those who are caring for someone who does. If my story begins to bore you, please at least read the final paragraph.

On Friday afternoon, I had the unfortunate experience of needing an immediate appointment with my doctor due to some pretty frightening symptoms. I am fortunate that my doctor knows me, knows my history and is one who truly cares about her patients. I know, this should be true of all doctors, but the reality of it is not.

It only took her a few minutes to suspect a kidney stone. I have no history of stones or kidney-related problems. She decided to immediately send me to the hospital's outpatient center for some blood work and a CT scan. She told me that on her order ahwwr, she had written that I should be held there until they called her with the results and she would speak with me then. Then she reminded me again because she knows of the problems I have with my FTD. I'll skip ahead and say that I did indeed have a kidney stone but it was not blocking anything, so I was sent home in the hope it would pass. Oh, and I am to call her Monday morning.

Backing up now. My husband had escorted me to the doctor, but we were expecting someone to deliver something to our home shortly after the appointment. I called my sister and she met us at the outpatient center (which is conveniently only a few blocks from her home) and was my patient escort and anxiety reducer for the next couple hours.

After being registered, I was almost immediately invited to the lab draw area. I insisted my sister accompany me and they allowed it even though there wasn't much room for her. I wasn't confused by the blood draw, but I also had a urine culture specimen to deliver to them because the courier had already left my doctor's office. I also had my purse, my coat and yet more paperwork. Having more than one thing to worry about confuses me and causes more anxiety, so I was really thankful to have her with me.

Next, we were off to radiology where we had to wait for our number to be called. When it was, all my patient information was verified again then we were taken to another waiting area. After a while, I was invited into another small office to review things. When my sister got up, we were told there wasn't enough room. I actually stood up for myself and am quite proud of myself!!! I told the clinician that I have FTD, a rarer form of dementia, get confused and must have her with me. Guess what? No problem. She had nowhere to sit, but she came along.

It turned out to be a very good thing. I was handed two bottles of that awful thick, horrid contrast crap to drink. I immediately got upset because I just cannot handle drinking that and usually throw it up as soon as I drink it. My sister calmed me down and explained that the doctor said I didn't need the contrast, that the stone would show up quite clearly on its own. When the staff person realized we were looking for a kidney stone, she finally informed me that I was allowed to refuse to drink it and that she would note that I had on my chart. With my anxiety level over this issue, I would have been a mess if my sister had not accompanied.

Next, you guessed it, off to another waiting area. This time, I knew she wouldn't be able to go into the CT area with me, but she took all my stuff so I had nothing to fuss over and made sure I thought I would be okay. It was fine. I have had many CT's, MRI's and PET scans in the past ten years, so I didn't freak out inside the machine .

I had told everyone I encountered, at least twice each, that I was not to be sent home. Between her order sheet and my constant haranguing, I was held in the waiting room again. I was warned that it would most likely be at least an hour before they would get back to me. Fifteen minutes later, I was called to a phone on the reception desk and my doctor was explaining everything to me. I was allowed to go home and am to call her on Monday morning and we will decide what direction to go if I didn't pass it over the weekend.

Bottom line on why I am sharing this probably very boring story:  Never be reluctant to speak up for yourself in any medical situation. They will not think any less of you if you let them know your situation. In fact, you will probably get better care. Secondly, try to have someone with you who knows you well, knows your medical history and is not reluctant to speak up and truly be your representative.