No politics today
Tuesday, March 11, 2008 at 12:50PM
Larry Van Guilder in Personal, rheumatoid arthritis

No rants about local or national politicians today. Frankly, I don't have the heart for it right now.

Anyone out there either suffering from a chronic disease or have a loved one who does? I'm wondering about how you cope. My wife has rheumatoid arthritis, and right now I'm not doing nearly as well as I would like.

About 18 months ago, Becki developed a cough that refused to go away. (She doesn't smoke, never has.) For a time our family physician suspected bronchitis, and she went through a couple of rounds of antibiotics that didn't help.

A couple of months went by and she started developing pain in her wrists, fingers and knees. The cough got worse, and when she began to cough up blood we knew it was time to seek more specialized help, and we were referred to a pulmonary specialist.

A bronchoscopy followed by several MRI's over a period of about a month revealed something amiss in her lungs, but a lung biopsy would be required to get a diagnosis. Other diagnostic tests taken around this time indicated a very high "rheumatoid factor"  in her blood.

The biopsy was performed in the hospital, a three day stay as it turned out. The day she came home she developed pneumonia and was out of commission for a month. Meanwhile, the pathologists were baffled by the tissue samples. We were told only that there was a significant amount of "necrotic" (dead) tissue in her lungs, especially in the lower part of her right lung.

The samples were referred to the Mayo Clinic. After several weeks they responded with a non-answer answer, saying only that the samples had the appearance of "non-organizing pneumonia" and "atypical tuberculosis." In their letter they thanked the referring physicians for sending them this "very interesting case."

The pulmonologist, Dr. Lemense, a great guy, suggested an appointment with a rheumatologist. In the interim, he prescribed a hefty dosage of prednisone. Becki was no longer coughing up blood, but the joint and muscle pains were getting worse.

We discovered that rheumatologists are few are far between in Knoxville, but we finally secured an appointment with Dr. Klipple at UT Medical Center. Several more rounds of blood tests and x-rays followed before Dr. Klipple was satisfied that Becki had rheumatoid arthritis. She started treatment with Arava and Mobic last August.

Arava is known as a "DMARD," a disease-modifying anti-rheumatic drug. Among other side effects it lowers the patient's white blood cell count, making one more prone to infections and  opportunistic diseases. Mobic is what I call a supercharged version of ibuprofen, prescribed for pain. It comes with a suitcase full of side effects, including stomach and bowel problems. And, at least with Becki, it hasn't done much to control pain. Intermittent rounds of prednisone have thus far been the only successful pain-relieving therapies.

About a month ago Becki contracted flu. She missed two solid weeks of work, and since "recovering" her cough has returned, worse than ever. This morning the rheumatologist's nurse called to tell her her white blood cell count was dangerously low in her last blood test (she has to be tested monthly because of the Arava) and she needed to come in for another test ASAP.

Perhaps the most difficult thing for me has been watching this disease steal the joy from Becki's life. She's faced it all like a trooper, much better, I'm sure, than I would have handled it. She's doing her best to continue working (she's only 55), but every day is a struggle.

I become frustrated and - frankly - depressed because there seems to be so little that I can do to help her outside of making her home life as easy as I can. I've cooked a lot more meals and done a lot more housework in recent months. I try to do all the grocery shopping. But I can't do a thing to relieve her physical suffering.

Anyone else out there in a similar situation? What are your coping strategies?  

Update on Friday, March 14, 2008 at 10:33PM by Registered CommenterLarry Van Guilder

I've received many e-mails and comments following my "No Politics Today" blog. Thanks to everyone who took time to write with suggestions. Some are RA sufferers, others have family members with RA.

The response has been uplifting. The realization that I'm not alone is worth more to me than I can express.

Thank you all.

Larry Van Guilder

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