Thursday, May 31, 2012

Replacing Doctors.

Hello again:

Once again I pen a personal note.  The other day I went to my PCP, Primary Care Provider, for what was supposed to be a routine follow-up visit after all this mess I’ve been through only to have her terminate me as a patient.  It just seemed we couldn’t see eye to eye on my care.  So the patient doctor relationship was ended.  It happens, in fact this was the second doctor this year to end the relationship, and the first was a specialist.  It happens.

Let’s face it, people with rare chronic disorders are difficult patients and many doctors just aren’t up to the challenge or even want it.  Last year when the PCP I had stopped accepting the form of Medicaid I was on I had to search for another PCP.  The search took weeks simply because doctors weren’t willing to take my insurance, or they didn’t want the responsibility of taking care of a rare disease patient along with all its challenges.  This is the lot of a zebra as many of my fellow Cushies well know.  And it’s getting worse, but that’s a whole other topic all by itself and fraught with peril because politics has much to do with it.

I think I’ve already mentioned that I’ve been through five endocrinologists in the last twelve years.  Add to that Four PCP’s and a pulmonologist and that’s a lot of doctors.  I know of other Cushies who’ve been through even more.  The reasons are legion, they don’t get enough money from the insurance provider to make it worth their while, and they refuse to see what’s right in front of their face or whatever.  And more often than not it is somehow our fault.  It just seems to come with the territory.  So what is the Cushie to do in the face of the loss of a doctor, especially a PCP, the gatekeeper to our care?

Well, after we calm down from being royally pissed whether they ended it or we had to a positive attitude becomes a must.  That’s especially needed for the search or one can easily become discouraged.  In my case I had to call Medicaid to request a list of providers in my area approved for Medicaid and directions to their site.  In my case I found out that significant changes had been made in the policies and system since my last search a year ago.  Those changes were welcome, not the least of all that the Medicaid plan I was under had been discontinued and I’d been folded into the main Medicaid population.  That made some things easier.

It was about the time I started the search that my computer went down.  So my search for the day seemed pretty short.  But when my wife got home and I told her of the changes she suggested I call my last PCP’s office and see if they would take me back.  So I did and now have an appointment for next week.

So my next point, patience wasn’t necessary this time.  But it usually is when one loses a doctor and has to search for another given the reluctance of doctors now to take either those with chronic diseases or who are poor.  When one has both strikes against one; patience becomes a necessity.

Persistence is a key in the face of rejection.  Remember it took me several weeks to find a doctor’s office who would accept me the last time around.  One simply has to keep at it, just as one has to persist to get their diagnosis and care in the first place.  But if one hangs in there like a bulldog and doesn’t give up one will succeed.

That being said, don’t let the prospect of having to find another doctor intimidate you.  If your doctor is either incapable or unwilling to do their job you are better off finding one who is.  The search may be hard, but the rewards are worth it at the end when, not if, but when you find the right doctor for you.


  1. I love your blog. I am 26 years old. I just found out that I have Cushings, so I'm trying to get as much information as I can. I just recently changed Endo's. I have been going to the same one for 3 years. They had me on 30 mg of Steroids a day for THREE years. I walked into my new endo's office, and he said, "You have cushings." And then explained to me that I am on too high a dose of steroids, and then proceeded to cut my dosage in half. After this, my insulin was cut in half. (I had 2 pituitary tumors, blahblahblah you know the deal, I'm sure. So I have much more than cushings) I hate how much weight I've gained. That's my biggest problem. I know it's shallow, but if that could be changed, I would do anything.

    I also have a blog, I have talked about my experience as of late, and my surgeries, if you're interested.

  2. Thank you for the comment:

    I did check you blog out and will see if there is a subscribe function on it. As I read your post there in changing your endocrinologist one thing which stuck out was your comment on withdrawal symptoms. One thing you want to familiarize yourself with are the symptoms of Addrenal insufficiency, a very real danger when coming down from steroids whether your a Cushie or not. That's because the administration of steroids will shut the addrenal production down and it takes awhile for them to start back up after the steroids are withdrawn.

    Doctors in ERs often don't consider it for various reasons and the literature on the subject I've seen doesn't mention it can come on sudden and be quite acute. Authorities seem to consider it something which develops gradually and which can be caught well before it reaches the acute stage if one is aware of what to look out for. That is a big mistake in my opinion. I'm gathering information on it and plan to do a post on the subject.