Why we have to be educated

Three weeks ago my husband had an episode (like a seizure but we’re not sure yet) and the doctor who saw him (at a major teaching hospital) did not know what Lewy body was. I explained it to her. While we were down doing the CAT scan she took her lunch hour to read up on it and try to determine if it was the issue.

Saturday morning my husband, who is on a blood thinner, had an intestinal bleed. When we got to ER (at a major teaching hospital) and I mentioned Lewy body disease they did not know what it was. I, again, explained what it was. My big concern was the interaction of any drugs they might want to use.

During his stay here in the hospital he had to have a procedure that would normally use a sedating type medication. The GI specialist also had not heard about Lewy body, but listened and said she was going to contact anesthesia and have it done under anesthesia. Last year he had a serious problem with anesthesia (maybe due to Lewy body). When the anesthesiologist came and talked to me she did not know about Lewy body. She had an intern or resident working with her and she asked him if he knew what it was and he said oh yes, but it’s not a problem. I made the comment, “Well it must be for him because of what happened last time. I think the problem with Lewy body is they don’t yet know all the drugs that will interact with it.” The head anesthesiologist held up the procedure (on an already busy day) while she read about Lewy body and what drugs she could use.

I didn’t have my info with me and could not remember (due to stress) the names of what we needed to avoid.

Later when they needed to give him blood products and they mentioned the over-the-counter antihistamine, diphenhydramine, I was able to tell them that would be a problem too.

They did set up a room where I could stay with him and be there to answer questions because if they ask him he will say anything and some of his answers this time would have gotten him in big trouble.

What I learned from this:

– Get myself more educated.

– Buy an alert bracelet that says drug reactions with Lewy body

– Have the list of the known drug reactions with us at all times.

– Figure out which web site has the best drug reaction info and have it written down for them.

By the way, this hospital is where his Lewy body was diagnosed and has wonderful neurologists who know all about Lewy body. I am going to suggest that they have them give some seminars to the doctors (who were all wonderfully interested in learning about it).

Work harder at educating the public. I have been but it’s been more in the area of diagnosing not the drug interactions. Now i am changing my focus.

Helen Bishop

Oct 15, 2013