Who’s ready for a new series of posts?
Great, me too!
Over the next few weeks I’m going to share about the many choices that come with being chronically ill and some more specific to those of us on TPN and/or tube feeds.
My friend Joey, the manager at our local grocery store, gave me permission to take photos in his store. I’ve had so much fun taking photos for my blog, and when it came to the photos to illustrate “choices,” what better place than the grocery store? There are SO many options. So although they don’t relate directly, I think the message is clear, endless choices!
Why don’t we just start big today and talk about the choices that come with choosing our doctors? Here are a few of the questions I find me asking myself to make sure I’m getting the best care possible.
Is this doctor an expert in my condition?
There are already so many specialty clinics that it makes the process even more difficult when you are dealing with a sub-specialty diagnosis. As an example, I require a gastroenterologist, a doctor who deals with the digestive system. But, even more specifically than that I am always best taken care of when in the hands of a motility specialist.
Sometimes, it is hard to figure out where the best specialized specialist might be. It seems like it would be easy to find that information on the vast internet, but this isn’t always the case. Sometimes, it takes several phone calls and sorting out who exactly might be the best fit for your needs. Hop on over to my phone calls and scary mail post if you need a pep talk to get those scary calls made!
Do my doctor and I jive well together?
Always remember that your doctor is just as human as you are. They have personalities, feelings, opinions and make mistakes – all the human things. This also means that just like any outside relationship, there can be a connection or not much of a connection. Just because you and your doctor aren’t the best of friends doesn’t mean you should break that relationship off. I’m essentially saying that if conversations between you and your provider never seem to solve any problems, result in you constantly feeling stuck or find you feeling like you’re never on the same page, it might be time to evaluate where you are with your care team.
I’ll give an extreme example when I knew it was time to look for a new provider. I once walked into a new doctor’s office after I’d moved to a new state. The first words out of his mouth were, “Alright, we are going to be stopping this TPN.” What in the world? This was after about ten years of TPN use with no end in sight. While there was reason for him to be concerned, this was absolutely not an appropriate initial meeting. Inappropriate comments can be discussed (as this was) but sometimes there is need for figuring out a new path.
Is my doctor willing to learn my story and try new things?
The most important things to find in a doctor while living with a rare disease is the knowledge that you trust them and that they are willing to listen and have an open mind. I’ve found that most times we know our bodies better than doctors are able to. We live day to day with our symptom patterns. We know how different circumstances affect us and all kinds of other things that make our cases unique even between patients with the same diagnosis. It is so special to find a doctor who not only listens to what you are experiencing, but is also be willing to try non-conventional and creative ideas.
An example from my life is when I visited Mayo clinic and was given a draining J-tube after they realized my anatomy was too wonky to place a draining G-tube. Draining J-tubes are absolutely not the norm, but my doctor saw that it might work in place of what wasn’t working and after discussing it, we tried it. I’ll always be thankful for her open-mindedness although it wasn’t a forever solution, it led us to understanding that decompressing my abdomen was helpful. This valuable information ended up leading to my life-changing surgically placed draining G-tube, but had we not experimented with something unconventional, we might have never tried venting at all.
Maybe you are in a circumstance where you are under the care of a doctor who doesn’t specialize in your condition or treatment (specifically TPN in this case) but is absolutely willing to dive in and learn all about it. I’d say you have a gem of a doctor!
Is my local doctor giving me the care that I need?
I moved from the huge medical center of Dallas, Texas to a significantly smaller medical center in Fayetteville, Arkansas a few years ago. When I moved, I was told that I needed to find a new care team here in Arkansas. This proved to be extremely challenging when nearly every doctor I contacted didn’t even show signs of understanding what home TPN was. I even had a nurse return my phone call with a message from the doctor saying, “No, I won’t deal with a TPN patient. Why did she even move here from Dallas?”
I did find a gem of a general family doctor who was at least willing to sign my TPN orders and listen to my story, but with not much of an idea what he was dealing with. While I absolutely appreciate his patience and care, he and I both knew that I needed to find a specialist who knew how to care for my special needs. After a trial with Little Rock doctors (about 3 hours away) it was decided that Dallas (about 5 hours away) was the best place to have my main source of care be.
While it is a struggle to have to make the trip to Dallas every few months, it is absolutely worth the excellence in care that I receive there. What makes it even better is that my fabulous PCP works with my Dallas care team to make things go as smoothly as possible.
All this to say, sometimes it takes going out of our town, state, heck sometimes even country to get the care that we need.
Of course, there are numerous other questions that you could be asking yourself about your doctor choices. But if things seem to be going smoothly, you feel that your needs are being met and you feel heard you’ve probably got yourself a good team. On the other hand, if you feel that you might not have these things with your current situation, perhaps it’s time to start looking around to see if there might be a better path for you. I know it’s hard and exhausting when there are so many choices out there, almost like finding the perfect syrup for pancakes!