Concierge Medicine: My Best Advice For Rare or Chronic Illness Patients

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If you’ve read my blog before you’ve probably see me mention that I have a concierge doctor. I realized that I needed one about four or five years ago. I was going to the emergency room every other day for my POTS symptoms, it was nearly impossible to get into the cardiologist’s office for an appointment. Every time I ended up in the ER I would have to explain over and over what my disease meant and what sort of treatment I was going to need. The result was that I was working with doctors who didn’t believe me or didn’t know what to do with me.

When it comes to rare diseases, I don’t have a stronger belief than the one that you should do everything in your power to get a concierge doctor.

Did I make that clear enough? The best thing you can do for yourself as a rare or chronic disease patient is to get a concierge doctor.

What is a concierge doctor? They are physicians who work with a small patient load. While a regular practice may have 2,000 patients, a concierge practice could have 200. This means that doctors can spend more time with you during appointments. Often up to 45 minutes to one hour appointments. They work with the history of your other doctors to build and organize your case. They often take time to do background research on your disease—which is so important for rare disease patients who need someone on their team close to home.

Dr. Santa Maria was my first concierge doctor and it was such a great experience. I remember coming out of his office after our “meet and greet” appointment and just crying with relief. For the next two years he was so devoted to my case. He did tons of research and spoke with other POTS researchers. We quickly worked together to create a management plan that flipped my care from having to be in the ER every day to doing infusion therapy in his office twice a week. When I did have to go to the ER he would either meet me there or call (and call, and call) the on-staff ER doctor to fill him in on my case. No longer were doctors coming into the exam room empty handed. When I was hospitalized and had a problem with a nurse or the staff doctor, my concierge doctor was only a call away from straightening things out on my behalf.

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Another perk of concierge medicine? 24/7 phone access to your physician. This means that your doctor provides you their cell phone number and you can call day or night (I mean, try to call during the day obviously, but if there’s an emergency it’s going to be them on the line.) Can you even imagine?

But let’s get to it. You’re worried about how much it costs.

But before we get into that, let’s talk about what you’re already spending money on without a concierge doctor:

  • -Copays for appointments with other doctors who are not keeping track of your case
  • -Medications you’ve already tried, but have to try again for a new doctor to prescribe something different
  • -Medications that totally won’t work for you, which your doctor would have known had he spent more than twelve minutes with you
  • -Hospitalizations
  • -ER visits
  • -Over-the-counter medications that you’re guessing might help

How much do you think you’re spending on those things right now?

For me? It was a lot.

So the annual $1,600-$1,800 (depending on the doctor) was a fair compromise. And because I’m a normal 26-year-old making what most normal 26-year-olds are making this early on in their career, I take advantage of the quarterly payment plan.

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I feel like I’m really selling this.

Because I am really selling this.

But this isn’t a sponsored post.

I don’t have any business affiliation with any concierge doctors currently. I am telling you what I tell every friend, patient, and family member who I see struggling with things like case management or harassment in the hospital. If this is part of your life, you need to invest in the best protection possible. I genuinely feel that concierge medicine, at least in America, is worth every cent, if you can manage to scrounge it up.

 

1f9b8e0816104a22accf183c76809620I also want to stress the importance of something you know, but maybe you’ve haven’t seen blogged about: the burden and stress of your disease on other people in your life. Is your family or spouse tired? My concierge doctor works with my mom and my husband when I’m in the hospital to get my treatment plan in order. If I’m too sick to make my own medical decisions he’s there for my family to help them come to the best decision for me. (Obviously this is something you have to give permission for) but I find a lot of relief in knowing my family has a resource on how to guide me. I can’t always tell when I’m going downhill—but with my concierge doctor now in the mix I have a cohesive team for the big decisions.

He also works to help me find other specialists to add to my medical team.

 

You can find a doctor by using services like MDVIP.com or my just googling “your town + concierge doctor.”

Feel free to leave any questions, I’m happy to answer. I know the number one question I get is about the cost and I’ve heard a lot of sighs of relief when I tell them it’s under $2k a year. I hope that alleviates some doubts for those who feel like it’s out of their reach financially.

 

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