Tuesday, November 21, 2006

Never lie to your doctor

I've learned a few things over the past few years from dealing with my COPD. One is if you go to a doctor for help, take his advice; you are partners in your care. The other is not to lie to him.

I tried fairly successfuly for several years hiding symptoms and telling everyone that I was "okay". I was pretty good at walking for a little bit and then stopping, pretending I was looking at something so that you wouldn't know it was because I just couldn't breathe. At work and with my family I would hide that it was so hard to do even the simplest things. I was always tired and getting through a day was tough to do.

I took on more and more responsibility at work but was exhausted by noon. I dragged all the time but didn't want anyone to know. Denial? Yes. Need for control? Yes. I just didn't want to be a "lunger". That's what we called them years ago, maybe still do.

I would go to my PCP and get the scripts I needed to help me breathe, but I always told him that they helped and I was doing fine. I didn't tell him about the fatigue and air hunger. He didn't have a clue and that was my fault.

I was also seeing a pulmonologist but it was hard to get anything past him. He sent me to pulmonary rehab a few years ago after many refusals on my part. I cancelled appointments with him constantly and avoided him because I didn't want too many doses of the truth.

Three years ago I was hospitalized with respiratory failure. I wasn't doing well and the pulmonologist wanted to intubate me. My PCP didn't think I was bad enough to be intubated but the pulmo did it anyway. I was on a vent for a week and it looked pretty grim for me for a while. I was also the dreaded nurse-patient who was horrible to deal with. Although I'm sure it was the medication, I pulled the tube out twice and as soon as I was off the vent, I wanted to go home and I was the one who complained bitterly to anyone who would listen that it was too noisy at night. But somehow I got through it and got better.

A year and a half ago, my pulmo wanted me on oxygen. I was still working and thought he was nuts and refused to "give in". But six months later I went to him in tears, no longer able to keep up the sham that was my life. I gratefully accepted the oxygen that has made my life easier. I do what he says now. He's my partner.

My PCP apologized every time I saw him for a year for not recognizing how bad I was before I went on the vent. But truly he had no idea how much I had declined because I didn't TELL him.

A friend used to have as her signature: "It may be that my life is to serve as a warning to others". I learned the hard way. Thank goodness I didn't die trying to prove how strong I was.

2 comments:

Mother Jones RN said...

I write down a list of I want to tell my doctor. My memory is failing me in my old age. I tell him everything.

MJ

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