Patients Who Have Changed Our Lives

WildcatFanRN, BSN, RN

There is one person though who taught me through the way he viewed life that we can't control how a person will live no matter how much information and teaching we give. Johnnie was a very brittle diabetic; his blood sugars were very rarely under any semblance of control.

The only way they ever were was if his mom controlled his diet and prepared his food. Johnnie couldn't cook to save his life, though he had been taught at the School for the Blind, yes he was blind too though not due to diabetes, but glaucoma. On top of everything else he was only 4' 11", a height caused by medication he was on as a child to treat aplastic anemia. Johnnie wanted to live life to the fullest, and to him, this meant living on his own. The problem with that was his diabetes.

His blood sugars would range from the '30s to well over 900. He hated anyone telling him that he needed some supervision so that his blood sugars could be controlled better. After years of fighting, and the fact he was now in his thirties he finally upped and moved to a town almost 2 hours away.

There he found living on his own to be difficult when your only means of income is your SSI check. His mom couldn't get him to also understand that having a steady job would be a good thing, but he was afraid to lose SSI.

I tried to make him understand this either, but he had this funny idea that people owed him....whatever he wanted. He wouldn't listen to what anyone had to say if it required him to change what his plans were, or what he thought was better. He had many dreams, but for some reason thought he could attain them with no work whatsoever. He wanted to be a DJ and collected records and made mix tapes into the wee hours of the night. But when it came to taking care of himself, he would do the best he could...but it definitely wasn't what he needed.

He needed to check his blood sugar four times a day, and have insulin shots prepared. Because he didn't want to be considered homebound he couldn't get a home health nurse to do these tasks for him since remember he was blind. I worked with him, his mom worked with him and neither of us could get him to at least move closer to home. He could still live on his own, but at least he would have someone there to check his blood sugar, set up his insulin, make sure he went to his Doctor's appointments, etc. He always said that if he developed a diabetic ulcer that got infected to allow him to succumb to the infection, to not allow any amputations. His mother agreed to this, understanding his reasoning that he didn't want any more handicaps.

Today Johnnie would have been 48 years old and tomorrow is the 8th anniversary of his death. He died in 2000 from kidney failure secondary to diabetes. I wonder every day if he would still be alive if I or his mother had been able to convince him to take his health seriously. But he always lived as if he had no time. He even told me once that he didn't think he would live to be 40.

We did not know however that it would be a self-fulfilling prophecy. I remember arguing with him to give dialysis a try, to get him healthy enough to be considered for a kidney transplant. I actually grew angry at him, something I have done with patients of mine but have never shown. I could show my anger to him though; he was my older brother after all.

I was a relatively new nurse and had never worked acute care up to that point so I really didn't know how bad he really was. From the time I found out he was really sick to his death was a week. What I remember of those times was the kindness of one nurse on the hospice unit, who instead of saying he had requested no information to give out to his family about his condition, allowed my mom to find out how bad he was by putting the phone up to him.

He couldn't answer, so they knew he was really, really sick at this time. Without this one nurse, we would never have known he was actively dying. Our parents were able to see him one last time, and we're going to bring him home to die. But, we think he heard them, as he died the night before they were going to transport him home. Didn't want to move home even at the last.

I learned that no matter how hard we try, no matter the information available to us to give our patients. It's up to them to actually use the information given. We can advocate as much as we wish, but only if the patient is willing. My brother had the best doctors, and nurses telling him what he needed to do. But he felt it would "restrict" his life too much. I have run into many patients like this over the years. All I can do is try my best and hope that one of them has heard what I am trying to teach them and make the change they need to do. It is all any of us can do actually.

Patients Who Have Changed Our Lives

About WildcatFanRN, BSN, RN

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