Reliable healthcare. One would think all of the money spent on our behalf would guarantee a consistent standard of care. Au contraire!

It’s disheartening for me to admit it, but without a dedicated caregiver advocate–or patients like us that work tirelessly to stay up-to-date–it’s likely that the care received by someone who isn’t paying attention will be significantly inferior to a patient that asks well reasoned questions and stays alert along the way.

And sometimes even that isn’t enough. There are other barriers to quality care options. I was never more aware of it than after my experience this week.

I started to make my case yesterday. Here’s how I ended that post:

Dr. LukeI’ve made some good friends over the past two years at our hometown 21st Century Oncology office. Love the staff. Love Dr. Luke. Great guy. Lots of experience, and he works seamlessly with Dr. Tricot. His assistant, Heather, is razor sharp. The nurses are good at what they do. But (you knew that was coming) situations where I need to make suggestions or intercede are adding up. And it gets worse.

My concern: What happens to patients that don’t ask questions? That don’t pay attention?

Dr. Tricot, my specialist at the University of Iowa, is nothing if not thorough. It was clear to me that I had an infection.  “Have your stools checked for norovirus, rotavirus, adenovirus, cryptosporidium, cyclospora, enterovirus, Salmonella, Shigella, E.coli.”

Even with Heather’s help, it was still going to take three different stool samples to do that. And no adenovirus test is available; hope that’s not what I have!

Thanks to Heather going the extra mile, I already know one infection that I do have. Even though testing wasn’t complete, Heather and my new friends at Quest rushed the news to me in 24 hours: positive for C. diff.

New it! The symptoms (high fever and elevated resting heart  rate, looming dehydration) mimicked those that caused my hospitalization while I was up in Iowa for testing in December.

Dr. Luke called this morning. Nice of him to check on me. He’s nowhere near as aggressive as Dr. Tricot. Turns out he only wants me to come in for a blood test on Monday. Treatment can wait.

I’m not happy about it. But I do know it would help to see how quickly my marrow can recover on its own.

I asked Dr. Luke, “What could cause my platelets to drop so far, so fast?” He speculated that my infection might have something to do with it.

OK. It’s clear I’m getting excellent care. I know Dr. Luke, Heather and the rest of the 21st Century Oncology team here in Fernandina Beach sincerely care for their patients. But without feedback from a patient they can only do so much.

Remember the long list of possible infections Dr. Tricot wanted testing for? Check out an excerpt of an email I received from Heather on Tuesday:

I was able to add on the Norovirus, Rotavirus and Enterovirus (to the C. diff stool sample Pattie dropped off this am).

They do not have a test available for Adenovirus Stool.

The rest go in special containers and you will have to resubmit. I have attached the lab slip with the test codes and the container specifications from Quest. Please take it to them and get the containers if you want the additional testing. It seems like it will require at least 2 more samples…

I diligently took a quick “stool sample 101” course when I stopped in to pick everything up at Quest. Four plastic tubes, filled with a preservative. Last time I needed to freeze my sample until I could get it back. These you don’t. Better pay attention!

It took me 20 minutes to carefully fill each vile per instructions and get everything ready to drop off. It’s the coldest morning we’ve had here this winter and I don’t feel good this morning; rough night. See, even I’m not always a compliant patient! I’ll drop the samples off in an hour or so.

So let me pose the question. First, testing suggestions were not from my local oncologist. Does that means it would never be done? I’m not even sure how long it would have taken the team here to suggest testing for C. diff. Second, what is a sick patient that isn’t able to run around and pick up testing kits, get the samples, drop them off and–most importantly–work closely with their doctor(s) to get answers? What if someone doesn’t have a car? Or the dexterity or wits about them to follow and complete complicated instructions?

Working at a local dialysis clinic, my wife comes home some days so down, it’s like an alien sucked the energy out of her. She’s been really low lately. Turns out primary reason is seeing poor care her dialysis patients get outside of their clinic. Most are older with countless ailments: diabetes, congestive heart failure–you name it. She knows that most are getting inferior care and there’s nothing she can do about it.

Now I’m starting to get depressed.  Why are multiple myeloma survival rates stuck on 44 months? Patients dying from infections that aren’t properly diagnosed or treated? Certainly a big, big part of it.

gary petersenFriend and fellow blogger, Gary Petersen, is obsessed with myeloma survival data. He went as far as to start calling cancer centers in an attempt to ascertain their survival rates. Gary swears by data he has showing that patients who see a myeloma specialist on average live more than twice as long as those that don’t.

http://www.myelomasurvival.com/index.html

I think what I’ve experienced this past week illustrates one reason why.

I love it here. I’m willing to do what I need to do. And because I stick my nose into everything that has anything to do with my care at 21st Century, I think I get darn good service, don’t you agree?

But I’ve listened to other infusion patients. They have no idea what they’re taking or why.

Good luck with that.

MEDICAL UPDATE: I mentioned above that I had a “rough night.” I asked nurses, PA’s, doctors–anyone who’d listen–questions about C. diff and treatment options while I was recovering in the BMT unit in Iowa last month. I think I shared that vanco is a, “Good news, bad news,” sort of thing. The good news? It doesn’t nuke all the flora in your gut. Bad news? It works so slowly–and as you can see, doesn’t always stamp out C. diff the first time.

I was up every two hours, even taking Lomotil. Running a low grade fever. It will get better. But in the future I need to find a way to avoid suffering for a week or ten days before doing something about it. Got to stay on everybody. Like I wrote, “No urgency.”

Feel good and keep smiling! Pat