What Price Advocacy? Discomfort!

As my husband Steve completes his seventh week in the hospital following his open heart surgery, it's fair to say that he's come a long way. Truly, by all rights, he should have died -- were it not for the courage of Dr. Joseph Tepley and Dr. Brad Tupper.

But this past week, Steve suffered a setback. For a variety of reasons, he became volume overloaded and suffered several sleepless nights with severe shortness of breath. Fluid was accumulating in his lungs. Because he is essentially bedridden, Steve accumulates edema fluid in his neck and back, and even under his chin -- but less so in the usually dependent areas like the feet.

Concerned that the volume overload would place undue strain on his heart, I approached his health care providers. My concerns were reasonable. Plus, Steve's symptoms of chest constriction and shortness of breath raised concern about other possible diagnoses such as pulmonary embolism and coronary artery ischemia.

Here I am, an MD with a Master of Nursing degree -- and over two years of experience with Home Hemodialysis. And I found it uncomfortable to ask his care providers about these problems!

Would they resent my "intrusion?" Would my comments be charted as "wife insists....?"

Fortunately, Steve's team was gracious. His cardiac enzymes and d-Dimer did not support the worrisome possibilities of bypass graft failure or blood clots in the lungs. His chest X-ray, however, showed classic signs of fluid overload -- signs any second year medical student would have recognized.

I was relieved; we were on the road to correcting the problem. But what would have happened if I hadn't spoken up? Could it have meant a detour back to the ICU -- or worse?

What if I had been elderly (or more elderly than I am)? What if English was a second language? What if I felt truly intimidated, not just uncomfortable?

No doubt about it: there are barriers to being a "mama lion" in the hospital! But I believe, as a wife and caregiver, we have an obligation to overcome our discomfort and step up. Not doing so really could make the difference between recovery and disaster.

Remember: good doctors don't get rattled when you ask them questions. They welcome your input. They don't want a bad outcome either.

Take care. Linda Gromko, MD