This Week's View

by Deanna Lee Birkholm

October 4th, 2004

Too Close a Call

This is difficult for me to write. My husband, JC or Castwell, is ill and it will be some time before he is back to normal. The worse of it, it didn't have to happen.

About a month and a half ago, our family doctor changed the cholesterol drug he was taking. He had been on Provacol and the local clinic where our doctor is was out of it. So the medicine was changed to Niacin-release Lovastatin.

Because of my various allergies I always check out any new drug prescribed to me on I did not check out the Lovastatin. Part of the reason is the words Niacin-release do not appear on the drug labeling.

JC is intolerant of niacine and has severe reactions including face flushing, edema (swelling) and severe stomach cramps and diarrhea. He had a very mild reaction at first, which continued to get worse. Off to the doctors office. Doctor put JC on 'water pills' and told him he would probably have to take them for the rest of his life.

Although he was still very active, (up on the roof of our home trimming tree branches and spending a day on the ocean on a charter fishing for Pacific salmon,) he began feeling weaker. His feet and ankles were swelling.

Back to the doctor. Changed to a different water pill. Abdomen is now swelling. Doctor advised him to drink more water.

The Thursday before our scheduled Idaho-Fish-In, I called an old friend who had been associated with the same clinic a while back. She is a ARNP now with her own practice. I explained JC's symptoms and she said she would be at our house in half an hour. She was.

One of her questions was had any of JC's medications been changed recently. She did a thorough exam and was also very concerned. She ordered blood tests, liver scan, and chest x-ray for the next morning. When she got home she researched the new med, as did I here.


She told JC not to take any more of the medicine and the consensus was JC had toxic hepatitis, poisoning caused by the med, which then ended up with the liver shutting down.

Fast forward a few days, the Fish-In was rapidly coming up and JC wanted to go. He wasn't improving, but since the bad med had taken a month to get him in serious trouble, it would take some time to get the med out of his system.

Betty gave me a written list of things to watch out for, and if any of them appeared we were to head for home.

We went on Monday morning, delaying our departure by a couple of days. Bad decision. The Fish-In is a 10 hour drive east from Seattle, and we live an hour west of Seattle. No good emergency service in Lowell Idaho, and the next 'big' town is either Lewiston Id, or Missoula, Montana. Something we should have really thought about.

JC continues to get weaker.

One of the people at the Fish-In was Dana Sorenson from Colorado, an old friend of "Z's." Dana is also a PA with his own practice. He volunteered to take a look at JC. He wasn't happy with what he saw either, and said if he wasn't much better by Wednesday morning to bug out.

By morning the edema was pushing up into the chest and JC was having difficulty breathing. Dana said go; I packed up and we left.

I rarely drive, so now it's a 10 hour drive back and into traffic in gridlock Seattle. And once close to the hospital I get lost. I stopped at two gas stations in Bellevue asking for directions. Unfortunately none of the employees spoke English well enough to be of help. I headed in what I thought was the right direction and when a cop passed me I flashed my headlights and flagged him down. He couldn't leave his jurisdiction to get me to the hospital, but he wrote down directions I was able to follow.

We had called the hospital in advance and JC's heart doctor at the UW and told emergency we were coming, as had Betty.

Once there he was admitted into emergency with congestive heart failure.

There was some reticence on the part of the emergency doctors to believe the whole thing was triggered by the med, but finally they accepted it because nothing else made sense.

The next afternoon, Thursday, JC was moved out of emergency to the Cardiac ICU. They had him wired for everything. His blood work was out of sight, carbon dioxide levels off the chart and one of the doctors told me if he made it through I would be taking him home to die. There was another arrogant resident who tried to tell me I should have seen this coming for some time, after all it was full congestive heart failure. He didn't believe me when I told him JC had been fine, and how active he was. He changed his tune when Betty talked to him.

Of course they ran all the tests they could think of, and the liver is now fine, no permanent damage, the heart actually preformed extremely well or he would have been dead. The lungs are not in wonderful shape, but in a couple of weeks JC will be on a physical rehab program which will also help his overall physical strength.

The edema is not totally gone, although he lost about twenty pounds of fluids. The stress that put on both his lungs and heart was huge.

He IS going to recover, he is on oxygen day and night here at home.

The reason I write this is not to have you feel badly for JC; I do it in hopes of alerting you to things that can and do happen. Pay attention!

One of the things we wives fear is having a husband who doesn't like going to doctors. (Not that our family doctor helped - and by the way, he retired from his practice on Oct. 1) But if something isn't working, get another opinion! Don't kid yourself with the "I'll see how I feel in a couple of days." JC wasn't totally honest with me on how he felt - but I should have been more alert too.

Old Rupe a couple of years ago gave me a lecture on taking charge of our own medical care. I recall him saying "This isn't the 1950's and doctors just don't keep track of their patients and give that kind of care." Well, I dropped the ball.

Besides the physical toll this all took on JC (and me too) it is an expensive lesson. We do have insurance, but trust me, it will not cover the whole bill. Heck, we probably blew nice fishing trips to some of those far-off exotic places.

I hope you can benefit from our mistakes. Don't let it happen to you. ~ DLB

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