E.R. "Frequent Flyer"

I am a 3rd year recipient of my k/p transplant. A life altering experience that not many people can really empathize.

Unfortunately I do get sick a lot (minor colds, sore throats, infectionsearaches, bodyaches) and they usually blossom into a trip to the E.R. Trust me, I do try my PCP first, instacare, an appointment with another Dr. in my Dr's office, E.R. visits are last on the list and I have to be dam sick to go.

My last E.R. experience was uncomfortable. My bed was right across from the main station and I heard "drug seeker" and a lot of "Frequent Flyer" comments. Ouch!

Has this happened to you? How do you explain to a Doctor that going through all of the pain, agony, waiting, anxiety, etc, etc., etc for a transplant will damn well make you a little on the paranoid side and if that means going to the E.R. way too often, so be it,....

Thanks and I'd love to hear some thoughts, ideas or anything positive, that'd be great!!

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Permalink Reply by Mark on February 18, 2012 at 10:42pm

Kim, it almost seems like the transplant centers (TC) want to maintain exclusive control over our post-transplant health care, but have very little capacity to provide the actual care on an outpatient basis. My primary care doctor is usually not a good source for the type of care you describe because he has to check with the TC before treating, usually without the benefit of a fully updated medical record. Unfortunately, I don't see a lot of cooperation between the two ... as your case seems to illustrate.

I empathize with you regarding your ER experiences. Is your tx coordinator any help to you in finding a solution?

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Permalink Reply by Hostess Rise' on February 19, 2012 at 5:50pm

Hi Sweetie

Who in the world passed those comments? You can always write an anonymous letter to the hospital CEO or Admin office. I have learned during my travels that people who are not nice to you treat others the same way.

Try not to take it personal. Instead assert yourself and take the worries about how others see you out of your mind. How can you get well when you worry about labels? How do you know if those people where throwing names at you?

Is there another ER closer to you?

By the way, I am very proud of when I assert myself to new medical staff. I really do not care if I sound over the edge. I have been told that I am a challenge. Challenging patients take care of themselves.

Perhaps when you feel the tension, just say something like- I know you are super busy and this is a stressful time but.....I just wanted to fill you in that I had a kidney/pancreas transplant and I have been told to take extra precaution with my health and that is why I am here. Then go on....

I am so happy you shared your thoughts with us. ROCK ON Kim!