Friday, May 5, 2017

Patient Empowerment

Thank goodness, in my lifetime, I have had the very good fortune of having outstanding doctors when one was needed for myself or my immediate family. In fact, up to this point in my life there was really only two times that I can remember having to be bold and very firm with ones who were not listening to what I was explaining the problem to be. The first time it was with my 2 year old daughter. It was after hours, so I am sure that he was not very happy in having to take his turn with the group of pediatricians to meet us at the office on a Sunday morning. When he looked at my daughter (who was listless) in my arms and made the comment that she did not look very sick to him? The 'momma' in me wanted to go for the jugular. I believe that I made my point with my glaring look at him as I placed her on the bed in his office. Needless to say she had a very high fever and was diagnosed with roseola. Being a first time parent, the horrible rash and very high fever that would not go down was extremely frightening. He must have skipped his classes on Bedside Manner 101.

Interesting enough, three years later, I developed strange symptoms until at one point early one evening, I knew something was terribly wrong. Most of us are aware of our bodies and when they are telling us to get to a doctor. When I called the group of family doctors that I was going to at the time she simply said that I should take a couple of aspirin and get to bed. If not better in the morning then call for an appointment. Later that evening I began hallucinating with a very high fever and my husband at that time had a neighbor come over to stay in the house with our young sleeping children as he rushed me to the hospital.

Immediately, I was placed in the coronary unit and put in the ICU. Apparently the first thoughts they had was that I was having a heart attack, however, it turned out that the diagnosis was hyperthyroidism and my body was in high overdrive. They called in a specialist in endocrinology, who listened to me and what I had to say. He walked me through the diagnosis and what my choices were to take care of the problem. When my family doctor came in to see me later, all I could muster up to say to her was, "I told you that I was very sick and not some hypochondriac." I found out that she was, believe it or not, the wife of the pediatrician I mentioned above. I only envisioned that she and her husband must have gone to the same medical school and skipped some important classes together.

Otherwise, I have been so very fortunate in having doctors who listen to me and work with me instead of making me feel like some imbecile, much lower in all aspects of human life than they are themselves. This is not a doctor bashing blog. I thank each and every one who work extremely hard to take care of us, even those who don't listen and heed what the doctor has told them. 

Those instances were over twenty years ago. Yes, I have been to many different doctors for myself, as well as with my children and have had very good doctor/patient relationships, which is the way it should be.

Last year I went in for my yearly ob/gyn check-up. (Ladies, I can't say it loudly and clearly enough to you that you MUST do this for yourself each year.) Something did not look right on the mammogram so my doctor sent me to a specialist at West Clinic. First of all, that did not sound good, in that it is a cancer clinic. I just kept as positive as I could and said to myself, better safe than sorry. My very loving and thoughtful husband said to me that he would drive me, as we did not know what the outcome of this appointment would be. 

I went back alone for the initial check up. The doctor came in after all tests were run and asked if anyone was with me. I told him that my husband was in the waiting room. He sent the nurse to go for him so that we could hear the outcome of all the tests I had been put through. This doctor was calm and easy going and so very caring. He explained that yes, I do have breast cancer, going on to explain that it was the least invasive kind that there is. He went through what would be next, step by step. He actually did the biopsy that very day and scheduled the lumpectomy as soon as possible. He did not want it weighing on my mind. 

Next step was four weeks of radiation. A specialist in radiology was who I saw for this. Again, I can not say enough kind words about this doctor either. This place had guardian angels everywhere. Everyone seemed to know that their patients were going through hell and needed not only the support that was given on their home front (and I had total support there) but also total support from the moment you walked through the doors of the clinic each day.

Step three is when the problems arose. I was sent to a highly recommended oncologist. He did not seem as warm and friendly as the other two, yet not wanting to be judgmental, not everyone is into giving warm fuzzies. Just as long as he was able to take care of the next step that I was to go through. This was going to involve lab work and prescribing the right drug for me to take to help ensure that cancer does not return. The medicine is sort of like an anti-hormone.

The doctor had his intern take over at this point. Let me tell you that after taking the medicine for one week, I had terrible side effects from it while we were out of town. I had to to call him, which meant his intern, most definitely not him, and she said to stop taking it. When I returned to Memphis I was to make an appointment to come in to see what was happening. 

To make a long story short, each medication that she tried, caused more problems. When I tried to explain that these problems were not problems until I started on the medications, she interrupted me and would not hear what I was saying. I googled some of the side effects and showed her (as if she did not know) and I was told that only a small percentage of patients developed those symptoms. Well, do you think that it may be possible that I am in that small number of patients? 

All I know is that by her not listening to me and putting thoughts in my head that maybe she was right and better to be safe than sorry, I went through countless tests and procedures that were not necessary. One by one, each problem that the meds had caused were going away. The specialists that I had to go to due to these 'problems, ' as well as my three trusted doctors all validated what I knew was right all along. Stay off these kind of medicines. In fact, when I went in for my first six month check up mammogram, (which was all clear) my surgeon said that I am obviously a patient who can't take these and that all will be fine without them.

Always trust your own instincts, ask questions (loads of them) and when you are asked closed ended questions, finish them off with a narrative and keep talking until they must listen to you. Show your doctor that you take a major role in your own health and that you do not plan on stepping away from the plate. This is called patient empowerment. It is still remaining courteous and respectful, yet taking control with your doctor. You need to be the co-pilot and if he/she is not comfortable with that, then it is time to find a doctor who will be.

For some reason, I needed to hear my other doctors validate what I was feeling all along. After all, I did not go to medical school for 8 - 10 years, I am, however, the owner of this body and I can help a doctor make his or her diagnosis with some personal history, as well as medical tests and procedures. Listen to your patients. 

“Sometimes all a person wants is an empathetic ear; all he or she needs is to talk it out. Just offering a listening ear and an understanding heart for his or her suffering can be a big comfort.”
Roy T. Bennett


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