Advocating For My Needs

[gerald]

This seems to be someone most of us has encountered. However, it is good to know we are not along in our struggle to get proper care.  It is also good re-enforcement that we can not give up either.

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Advocating For My Needs
By Janet Plank—December 26, 2017

Before being diagnosed with COPD, I had been sent from doctor to doctor. It seems that what was going on in me was more than my original diagnosis of exercise induced asthma. Allergies also seemed to cause some confusion for the doctors. Pulmonary would send me to cardiology and cardiology would send me to pulmonary. Finally, I was sent to National Jewish. There I was diagnosed with COPD. They showed me how to do pulmonary rehab at home, had me talk to an occupational therapist, showed the group how to use an inhaler, talk to a therapist, and adjust my medications. It was there that I heard that microwave popcorn affected a person’s lungs and breathing. I was a popcornaholic. That was back in 2007 or so and I believe that the microwave popcorn is safer now. Though, I’m more reluctant to eat it now.

I had no idea what anything meant or what I was supposed to do

I arrived back home from Denver stunned. I kept wondering if I was dying. When I saw my regular doctor and told him “I have COPD” I was shocked when he smiled and said “I know.” Didn’t he know that this was big and scary? He had been my doc for a lot of years and we’d talk medical, pheasants and all kinds of things. When we moved back to Chamberlain and I didn’t see him again. His health wasn’t that good and he had been talking retirement, so he moved to a small town and had a medical practice there. I should have sent a card at least.

Getting re-situated with my doctor here was okay and everything fell into step. They even called us to catch the snakes that were scaring the patients. They thought they were rattlers. Once we figured out they were bull snakes, I would go catch them on my own and relocate them. How fun that I could be doing something useful! Once I started having pneumonia, as well as more exacerbations, I was referred to a traveling pulmonologist.

After a year or so, I had to travel further to see him, then he only held clinic in his office which was 138 miles away. It was too far, and I didn’t want to make that drive, so I was referred to someone else. I was still being bounced back between cardiology and pulmonology. I ended up at a big Clinic. I had been to this Clinic with someone before so I knew how big it was. I just wanted answers to why I was sick all the time. I also saw a sleep apnea specialist and an ENT (Ear, Nose and Throat). They said yes to the COPD, could be yes to the asthma, yes to the pulmonary hypertension and they found me a mask that I could tolerate for my sleep apnea. A yes to vocal chord dysfunction as well.

It seemed before long, I wasn’t able to see “my” doctors there

They kept switching them, and mine would transfer and be leaving for Texas, West Virginia or someplace else. Each and every one left. I really liked some that I had. Then I would meet new doctors. I finally said, I don’t want to have to reintroduce myself to each doctor and even though there were notes, it seemed I would have to start over. I would often be scheduled to stay 3 – 5 days and sometimes for the weekend because of the 6 hour drive. Finally, I said enough!

Locally, we went to the clinic associated with the hospital here. I actually called these doctors my home doctors while I was being seen at the bigger clinic. When I stopped, I was only using the local doctors and PA’s at the clinic here. I told one of the main doctors that I wanted them to take charge of my care, so I’m not all over the place. He agreed. They referred me again to a pulmonologist. He travels, so that’s a bonus and I like him! He’s done testing on me that I should have had a long time ago.

If I hadn’t stepped up and said enough, who knows where I’d be.

I want a doctor that I know will be there, treatment that I feel will work, and a short distance, because 6 hours is too far to drive and staying in motels is more than I can afford. Plus here, I have my choice of doctors and they know me. They will help me make decisions about my care; I am happy. Better yet, I know the doctors that I am seeing.

I have this because I advocated for my needs and finally, someone was listening.

copd.net/living/advocating-for-needs/

[jarca]

wow I can sure relate!
closest pulm is 165+ miles from me.----and that's the closest to get an 'in chamber PFT" done also!
I do love my local clinic & nurse practitioner that I see, but .....