On being a patient

Evidently this week is Crohn's and Colitis Awareness Week. I had no idea! I'm pretty aware of my Crohn's disease all weeks of the year, so I guess I didn't realize there was a special week dedicated to it. I'm not exactly sure how one celebrates such a holiday...usually I'd make a cake or something, but adding food to the fire that is my belly doesn't seem to be the most productive sort of celebration... ;)

Well anyway, in honor of the week I thought I'd write about what it's like to be a patient in our very broken medical system. At the onset I would like to make it very known that in NO WAY am I looking for sympathy for my experiences. While they may not always be the most fun, the reality is that I am living with a chronic disease and this disease has good days and bad days. Luckily for me, the vast majority of my days are good. I also would like to make it known that I have been utterly lucky to know the physicians that I know and to be health literate enough to talk to them about what is going on inside my body. Many Americans are not this fortunate. And they also don't understand the system well enough to know where to go when they need help navigating it.

Earlier this fall I had my first Crohn's related ER visit. I was having a range of symptoms including a rapidly increasing fever and quite a bit of pain. I can "circle the drain" as they say pretty quickly, when I have a fever over 102, so I decided to head to the ER. Admittedly, I know just enough about medicine to be dangerous (no, actually you cannot hear my bowel sounds through 4 layers of clothing including a sweatshirt and jeans), but the most astonishing thing is that the ER doc told me that I didn't have Crohn's disease. EXCUSE ME?! I'm sorry that in the ~6 minutes (of a 5 hour visit) that you spoke to me that you decided I didn't have the typical presentation of Crohn's disease and so you assumed my 2-year diagnosis was invalid. Oh, and you spent most of that time arguing with me about a "Crohn's medication" that I was on, which I, in fact, was not on and is not even a Crohn's medication. He refused to call my GI doc (who later was super pissed about not getting a phone call), even though I provided his cell number. He also couldn't manage to fax/email the SOAP note and discharge plan to my doc, so when the nurse printed it off and handed it to me, I read it. Interestingly he charged me and wrote all about many physical exam findings he discovered...even though he never actually touched me. He was also amazingly unconcerned with lab findings that sent my GI doc into a tizzy instantly. While I am thankful for the morphine I was eventually given, the visit ended up being a several thousand dollar waste of time. 

If only the ER experience was my only one. But alas, just a few weeks before that I ended up waiting at the hospital pharmacy for over 2 hours for a prescription because the e-prescribe system didn't recognize my pharmacy as a place that existed. Somehow my meds were initially sent across town to a pharmacy that I've never been to instead of the hospital pharmacy, but of course the hospital pharmacy staff wouldn't call the physician to see why the prescription wasn't coming through. Instead they just asked me to wait. Finally I got frustrated enough that I dealt with it on my own. Unfortunately, they still can't e-prescribe to my pharmacy. Still not sure who to contact to rectify that one...

Or the time that my antibiotics were called into a pharmacy that I no longer go to (without my knowledge), so when I went to my actual pharmacy they didn't have the order. They were kind enough to figure out where my meds actually were. By the time I trekked across town to the pharmacy that actually had the meds, the pharmacy was closed for lunch. And an hour later when they opened, they informed me that they only had 2-days of the 10-day prescription. And when I went back to get the other 16 pills 2 days later (after calling ahead and verifying that my prescription would be filled and ready), the pharmacist dismissed me and told me that she didn't have the meds and wouldn't have them for several more days. Uhm, no.  I was guaranteed that they would be here in two days, and only a few hours ago I was assured it was ready. She quickly, and amazingly, found the rest of those 16 pills like magic!

So those examples are only within the past two months. It's amazing the hoops I jump through. And I am lucky to have practically no barriers to accessing care. I can't imagine what it would be like to have them. Oh, you don't believe people have barriers to accessing care? Well let me just put on my public health hat and jump on my soapbox. Here's a list; it's far from comprehensive:

• Do I even know that I need to go to a doctor?
• Do I have insurance? (yes, this should widely be taken care of with the passage of ACA, but there are still people falling through the cracks...)
• If I have insurance, can I afford the co-pay and/or deductible?
• Do I have a physician/provider that I'm already seeing? Do I know how to go about finding a physician/provider to see?
• Do I have transportation to said physician/provider's clinic?
• Are the clinic hours during my work hours? Will my boss let me take time off for a doctor's appointment?
• Can I afford to not work while at the clinic?
• Does the clinic speak the same language as I do? Can I make an appointment when I can't even communicate with anyone? 
• What if there are cultural barriers between male/female interactions depending on the medical issue and my provider doesn't understand them? 
• I made it to the clinic and I managed to scrounge up money for my co-pay, but I'm 20 minutes late because I took public transit and now the clinic won't see me and I have to re-schedule. My work will fire me if I take off time again.
• The physician only has 8-12 minutes dedicated to seeing me. I have a problem list of 10 items. OR I need to have my chronic disease diagnosed, but no one has taken the time to hear the full 10 year story about what is going on, so they just assume it's something it's not (this happens a lot for Crohn's and Colitis patients). 
• I'm not health literate enough to understand what the physician/provider is asking me to change in my lifestyle. 
• The doctor/provider ordered a bunch of tests to be done at another time. Do I have the time/transportation/money for them?
• Medications were ordered for me. Do I have the money to pay for them? What if I need to re-fill them every month, do I have the resources for that?
• Does my insurance provider cover my medications? (Mine didn't want to cover one of mine. After a several month battle they agreed to cover it...it's still supposed to be ~$3000/month with insurance! Thank goodness for medication assistance programs!)
• Do I understand how to take my medications? 
• If I have multiple medications, what are the drug-drug interactions? Do I have to take them all at a precise time of day each day or else I have very bad consequences?
• Am I scared of the physician/provider? Have I had negative outcomes before and am afraid to repeat them?
• Are there stigmas associated with my problem that I don't want people to know about (especially true in small towns)? I know my physician socially, will he/she judge me for this issue?
• Do I have several physicians/providers that I see that don't communicate with each other when they make changes to my medications/treatment plan? Is someone coordinating my care? (I think this is done much better in smaller communities than in academic institutions...here you have to make another appointment with your other providers, pay the co-pay, take off work, etc. In Hastings, they usually just call each other up and consult. It's awesome!)

***And all of this is assuming I have an active problem. It doesn't include preventative services...IF I even realize I need them. 

So being a patient isn't always the easiest. I don't know how to fix our medical system, but I do know it's broken. I knew it while I was in medical school, but now I'm gaining a different perspective of the brokenness.  I am SO fortunate to not have barriers to accessing medical care. Yes, there are so many examples I could list of frustrating situations over the past few years, but at the end of the day I know that I can get medical care and that it will not put me into bankruptcy because of it (at least not yet...knock on wood that it won't ever happen!). Unfortunately that's not the reality for many. Acknowledging that these barriers exist for people is a good first step. And now let's work to do what we can to reducing the number of barriers experienced by people.