Wednesday, July 3, 2013

Sarah and Cleveland Clinic

As I noted in yesterday's post, Sarah had a rough first half of 2013.   Her undiagnosed illness which once consisted of painful joints graduated to a variety of unusual and unpleasant (to say the least) symptoms.  

At the beginning of the year she suffered an extremely sore throat, chest pain that seemed related to her lungs, and a low grade but persistent fever that became more and more frequent and gradually higher and higher.  In addition, her painful joints were accompanied by muscle and bone pain.

She had several appointments at her rheumatologist's office where she only saw the physician's assistant who was very caring but 'not a doctor'.  She saw a Nephrologist, a Gastroenterologist, a Pulmonologist, an Internist, and an ENT (Ear Nose and Throat).  None of these specialists could find a reason for her symptoms and referred her back to her Rheumatologist who she actually saw for the 3rd time in six years of regular appointments.  Since no one could find a cause for the fever and other symptoms, he recommended that she go ahead and start the Humira which we all hoped would offer some relief from the debilitating symptoms she had been experiencing.

So the plan was to take an injection every week for three weeks and then go to the recommended dose of one injection every other week.

After three weeks, Sarah was feeling worse than ever which she never would have thought possible.

Fortunately her Pulmonologist had suggested she go to Cleveland Clinic and her Internist who is her primary care physician had asked her if she'd consider seeing another Rheumatologist  for a second opinion and when she readily acquiesced he set her up with a very highly esteemed Rheumatologist in Louisville.  And after the Pulmonologist suggested Cleveland Clinic., Sarah made the appointment.

We went there on May 20th with very high hopes and some expectation that she would be admitted.  She saw a wonderful doctor who, with his Internal Medicine fellow, spent a solid two hours examining, questioning, and reviewing all the records she'd brought with her.  Finally, he told her he wanted her to wean from the steroids and stop the Humira that had been prescribed for her by the Rheumatologist.  After that, he wanted her back and admitted for extensive testing.

Although she was a bit discouraged at the thought of another several weeks feeling as debilitated as she felt then, she looked forward to finally having a diagnosis when we returned.

On June 10th she returned and was admitted.  She wasn't in her room more than two hours when she was visited by the Internal Medicine team.  This team consisted of five doctors who questioned and examined her and explained some of the tests that would be run.  After that she was visited by the Rheumatology team also consisting of five doctors.

For 4 days they tested and probed and examined and xrayed and it was obvious that she had garnered a great deal of interest.  But when all was said and done, there could be no definite diagnosis.  For three days, the overriding opinion was that it wasn't and never had been the rheumatoid arthritis that she had been treated for for the last six years.  However, by the 4th day, the diagnosis hovered somewhere between Adult Onset Stills Disease which is very rare and rheumatoid arthritis because of fluid that they'd seen in her hip joints.  Finally they told her she had some form of inflammatory arthritis.

And finally there was a plan for treatment.

The first doctor she saw at Cleveland Clinic became her Rheumatologist, at least temporarily, and he prescribed a medication that would be effective for either diagnosis but that was known to occasionally be almost miraculous for Stills.

We left knowing that the prescription had been faxed to Walgreens and we looked forward to her starting it when we got back to Louisville on the 13th.  We weren't too far down the road when the problems started with her insurance.  After six days of haggling, Sarah and Mike purchased the very expensive treatment themselves only to have it finally approved on the 20th.

She's been taking it every day since and I'm happy to say that there are improvements.  She's a long way from where we hope she'll be someday soon but it's such a relief to see an improvement in some areas and a cessation of the very worrisome fever.  The doctors there were able to eliminate things like lymphoma and other life threatening illnesses and that was absolutely priceless.

It's been a long haul and Sarah has been amazing.  If she has a fault, it's minimizing her pain and discomfort.  She never wants to be a bother or the focus of everyone's concern.  But ultimately things got so bad that she did finally agree to do whatever it would take to find out what was going on.

While we were there, I stayed at the Cleveland Clinic Guesthouse hotel but there were at least two other facilities for visitors including the International Guesthouse.  The welcoming sign when you walked into the main admitting area gave you an idea of the distances that patients were willing to travel to be treated here.
This sign was for just one of the buildings encompassing several blocks and connected by skyways that crossed over the parking lots, streets and alleys.
The staff was considerate and caring.  After a day or so, she asked for a bed next to the window and within an hour, she had one.  Her new bed was faulty (it leaned to the right) and when we pointed it out, the nurses immediately brought in a new bed.  Every concern was met with that kind of responsiveness.
We left with hope and an enormous amount of respect for the doctors and staff at this amazing hospital.


  1. So happy that Sarah is feeling better. How scary that must have been for you all to have to wait so long to get some answers. I've always heard good things about the Cleveland Clinic. Glad it was all true.

  2. This whole story, although I have heard it from you two on the phone, is just unbelievable. I can't imagine what Sarah has gone through, and I agree with you, her biggest fault is not showing how bad things are. She is a tough one, that's for sure. Thanks for the updates, and thanks for being there for Sarah.....although I'm not surprised at all because it has always been the kind of mother you have always been to all of us. There's no doubt in my mind that you would do the same thing for any one of us. Thanks, Mom!!


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