Friday, December 16, 2011

Being a Bad Patient and Doctor Fatigue

My rheumatologist was not happy with me yesterday.  Why?  Because I skipped scheduling an appointment with her this past summer.  And….I wasn’t getting my blood tested every TWO months.  I was a bad patient.

She made it very clear that if I wasn’t going to follow up with appointments every 4-6 months and get my blood tested more regularly, then she won’t keep me as a patient.  To be her patient, I must be more….responsible.  "Understood?"  Understood.

She’s a really good doctor and I can understand where she is coming from.  She is responsible for my care and if I don’t keep up my end of the bargain, then she can’t do her job.  And I’m taking serious medications which need to be monitored (methotrexate and Rituxan specifically).  I need to remember that.

Speaking of Rituxan, I went into my appointment yesterday stating that I wanted another round of treatment in January.  Before the last time we were going to plan a round of treatment, my rheumatologist said that she wanted to wait until I began to flare before scheduling a round.  She wanted to NOT automatically schedule treatment every six months, but to try to spread them out more because the effect of long-term use is still a bit unknown.

So I was trying to spread out the treatment again this time.  But...I had been flaring mildly this fall.  I flared in July/August after stopping methotrexate for a few weeks so that I could take an antibiotic for a diverticulitis infection.  That flare mostly resolved itself by mid-September but it seems that it opened the door for inflammation to come and go this fall. 

Did I see my doctor?  Well, no.  I was waiting to see if the RA decided to get worse or get better.  The flare wasn’t outrageous, merely mild and uncomfortable at times, or maybe I was just getting used to it.  Rob just had to be careful when he tried to rub my feet so that I didn't wince or yelp in pain.

When I started the Solumedrol in November for the MS relapse, the RA pain and stiffness went right out the window.  I felt great.  So maybe the RA had been more active than I realized.  I should have called my doctor.  I probably should have had a round of Rituxan in October or September.  Maybe my MS wouldn’t have relapsed if I had done that.

I’ve just been to see so many doctors and medical facilities during the course of this year, especially this fall, that I’m tired.  I’ve got doctor fatigue.  And the appointments won’t be done for at least another month (due to Rituxan treatments in January and my need to take my mother to several appointments for some treatments she will be getting).

Since mid-October, I’ve had appointments with or for:
  1. neurologist/nurse for 6-month appointment
  2. lab for blood draw
  3. cardiologist to explore persistent “skipping heart beats”
  4. holter monitoring for 24 hours
  5. another cardiologist appointment for echocardiogram and follow-up of holter monitoring results
  6. primary care doctor for annual pap smear (for which it had been 21 months since the last one)
  7. neurologist/nurse for MS relapse
  8. FOUR days of infusion center visits for Solumedrol treatments, followed by steroid taper at home
  9. mammogram (again it had been 21 months since the last one)
  10. another cardiologist appointment for stress test which I passed with flying colors
  11. rheumatologist for over due appointment
  12. lab for blood draw
  13. neurologist/nurse for follow-up after relapse (appointment on monday)
  14. and maybe an MRI if the neuro nurse wants to get a new one; we’ll talk about it monday
That’s 16-17 trips to a doctor or medical facility in 12 weeks (not counting any visits for which I may have accompanied my mom).  During this time, I also attended 9 yoga classes (which were held at a hospital-related facility). 

No wonder I have DOCTOR FATIGUE! 

And it’s not over yet.  In January, I anticipate 7-8 trips to hospital facilities between my mother’s needs and my own.  It’s going to be another busy month.  No wonder I’m burned out just thinking about it all.  Being a full-time patient is exhausting.

Now, I’ve got to wrap this up.  I’ve got to go up to the lab to have some blood drawn.  It’s been two months since the last test and I’ve got to keep up my end of the bargain.  Blood tests every two months….or else I lose a great doctor.


  1. No wonder, indeed. Due to doctor fatigue, I too have gone largely AWOL, except for that very special neurologist I now see, the first that I like in decades of seeing neuros. I will never skip an appointment with him.

  2. sometimes, all this running for tests and doctors and whatnot makes me feel so... well, sick. And I'm tired of it. SO sometimes, I skip some things, postpone (OK, procrastinate) others. And then there are the times where you just have enough energy for the basics (especially when flaring). Might be nice to get understanding rather than "I'm going to fire you as a patient if..."

  3. The doctor go round. I am pretty tired of it as well, but what can ya do?

  4. Well why in the world aren't there all docs in one area as it should be for chronic illness patients. Why do we have to constantly run hither and nither to track down all these specialists, blood workup, mri's etc. etc. I don't think doctors offices are very patient focused at all. If they were they would group themselves together to service us better. And don't get me started on medical records! Try getting all this info. pitched to 10 different docs.

  5. I believe you have a classic case of doctor fatigue...I have it also!
    We have to remember that they are trying to help us???

  6. I have it too but for my husband, I just drive him, but the endless schedule of appointments at the VA gets old. If I'm tired of it imagine how he feels, he's the one getting poked and prodded and examined.