Endurance

Perturbed, frustrated, aggravated, irritated, upset, disturbed, annoyed, bothered, discouraged, disheartened, dispirited, downcast, dejected…  I need a bigger thesaurus.

When I left rheumy #1 for rheumy #2, I was clear about what I wanted:

  • a doctor with whom I had good rapport
  • a doctor in private practice, not owned by a hospital
  • a doctor who saw patients without shuffling them aside to a PA

For a few years things were going well.  Unfortunately, about a year ago my doctor’s practice sold out.

Once they were owned by a hospital, things changed.  First thing to go was the excellent front office staff.  They were moved elsewhere within the system and replaced by lemon-suckers who just seem to be going through the motions.  Next my doctor’s MA (who always managed to process prescription refills within one day) disappeared; it now takes five days to approve refills and there’s a different MA every time I’m there.

To add insult to injury, the hospital brought in PAs.  Instead of seeing my private MD, I now see a hospital-employed PA.  The PA might be a nice person, might be competent after learning to do joint exams without causing pain, might be a lot of things. What the PA is not is the doctor with whom I established a relationship.  I feel betrayed.

Now the office is calling to move my appointment.  It seems that the hospital system has decided to open another clinic at another one of their hospitals.  My choice is to drive an extra 30 minutes or move my appointment to a different day.

I want out, but there doesn’t seem to be any point in finding a new doctor right now, since whoever I find could eventually sell out, leaving me right back in the same position.  Instead, I will show up for appointments as rarely as possible so that my prescription refills will be approved.  My youngest child is twelve; in six years he’ll head to college, and four years after that he should graduate.  That means I just have to deal with this ten more years before we can retire and move away.  If I can get away with follow-up visits every six months, that means I only have to go in twenty more times.  By then, I expect the medical profession to have undergone significant changes, and finding a new rheumy will likely be a completely different situation than it is now.

Twenty might sound like a lot, but I remember how many appointments I had the first few years after I was diagnosed. Twenty is nothing.  Although I was unhappy about things when I started this post, I actually feel better now.  I can endure twenty visits.

Early, Aggressive Treatment

Early, aggressive treatment is the standard of care for rheumatoid arthritis.  Thirty years ago, the standard was to use NSAIDs, only adding methotrexate or another DMARD after permanent damage had occurred.

We now realize that DMARDS modify the course of the disease.  They slow down progression.  They are supposed to be used as soon as possible so that the least amount of deformity takes place.

Why, then, are children still treated with NSAIDS?  I am fuming!  It took years for my daughter to even get a diagnosis.  When someone finally put a name to her joint pain, NSAIDs and exercise were prescribed.

Initially, that helped.  It wasn’t great, but when things are really bad, any improvement is nice.  For quite some time, though, it hasn’t been enough.  Last summer I expressed concern that my daughter was missing too many activities due to uncontrolled joint pain.  Her rheumatologist listened and blew me off, suggesting that she just needs to exercise more.

News flash:  at some point, the pain has to be controlled to make more vigorous exercises possible.

If one shoulder hurts, the doctor will do an exam, maybe order x-rays, diagnose tendonitis, and give a cortisone shot before sending you to physical therapy.  If one hip hurts, the doctor will do an exam, maybe order imaging, give a cortisone injection, and write a referral to physical therapy.  Same thing if it’s an elbow or a knee.  BUT for some reason, when my daughter has tendonitis and/or bursitis in multiple joints, she does not get expensive imaging (yay) or steroids or PT or a different med ( :( ).  She’s told to exercise and stick with ineffective NSAIDs.  They’ll treat tendonitis in a single joint, but when the problem is due to her immune system gone postal, she’s SOL.

This is affecting her schoolwork and her social life.  Do I give her an F in typing if she is in too much pain to be able to sit at a keyboard and position her shoulders/elbows properly so that she can complete her typing assignments?  Do I give her an F in science when her knees, hips, and back hurt too much for her to stand and perform experiments?  Does she just never do things with friends because she is in too much pain to get out of her chair?

This has gone on too long and is getting progressively worse.  Last weekend she was in tear because the pain, even after adding acetaminophen to her NSAID, was intolerable.

Yesterday I finally phoned the rheumatology nurse line and asked if there’s anything we can do to step up her treatment plan, or – at the least – do something temporary to relieve her pain so that she can get back to her exercises.

The nurse finally called back.  My daughter now has a referral to a pain clinic.  Are you kidding me??!!!  A pain clinic?!!!  She does not need counseling or pain medicine.  She already has an exercise plan – she’s in too much pain to do it.

Everything I’ve read says that the prognosis of enthesitis related arthritis is related to age of onset.  Maybe the prognosis would be better if the disease was treated more aggressively!  NSAIDs do not qualify as aggressive treatment.

Sulfasalazine is supposed to be very effective in treating the spondyloarthropathies.  Methotrexate is pretty scary to think about giving my sixteen year old, but it would be better than having her unable to function.  Even a quick steroid taper has potential.

I recognize that I have not been to medical school.  There are many factors that I might not be aware of or understand.  However, it would not be that difficult for the doctor to explain the indications for stepping up treatment.  If my daughter will be unable to function then she should quit dreaming of earning her DPT.

For the life of me, I do not understand why my daughter’s rheumatologist won’t try something else.

The Business of Medicine

It never ceases to amaze me that medical businesses are not run like a business.  Every business cross-trains employees so that if somebody is on vacation or out sick, the critical elements of that person’s job are performed.  Apparently that isn’t true in medicine.

My GI referred me to Virginia Mason for a lithotripsy and ERCP.  I could have the ERCP locally, but I’m told there’s no point since it needs to happen after the lithotripsy anyway.  I have to go to Seattle for this one.

I waited a week, then called the GI back:

Didn’t you say they were going to call me to schedule an appointment?

Yes.  They will call you.

Any idea when?  I had hoped this would be done by now.

Let’s see, I sent that on the… oh, my!  You should have heard back by now.  I’ll call them and make sure they got our fax.

Thank you.  Do you think I could get their phone number, too, and call them myself?

A call to the place I was referred got me the run around, but eventually someone told me that the person who handles referrals was out of the office for a week and a half, so it’s taking a while to get through all the referrals that accumulated while she was gone.  No, they would not schedule an appointment for me until their doctor said so.  The doctor did have my information, and they’d call me in 1-3 days.

Three days came and went.  A week later I called the GI office back and left a message asking if they could light a fire under Virginia Mason.  This isn’t a plea to fit me in sooner.  Just call me and schedule an appointment!

A few days later, GI called me back and said that Virginia Mason says they’re still working on it.  You’ve got to be kidding me!  My nine year old knows how to dial the telephone, talk to the person on the other end of the line, then write something on the calendar.  What is the problem here?

Imagine if your furnace quit working and the repairman said that he couldn’t schedule a repairman, but he’d get back to you in a week or two to arrange a good time for someone to take a look at the problem.  What if it was 20 degrees out, the faucets in your house stopped working, and there was a stream of water running out from beneath the house?  Would you do business with a company who wouldn’t return your phone calls or send someone to investigate the problem, or would you call around until you located somebody who wanted the job?

I asked GI to please find someone who actually wants my business.  Monday I will be on the phone looking myself, even if that means finding a different GI in a different city in order to get a referral to someone who will actually make appointments and see patients instead of sitting on their pile of faxes.  There must be somewhere else that this procedure can be done:  UWMC, OHSU