PERSONAL ESSAY: When Doctors Don’t Tell You…

By IKU KIRIYAMA

“Go to the dialysis class,” my nephrologist told me in February 2014 when I walked in for my regular appointment. I was bewildered. “What?” I said, as I heard the “D” word for the first time in relation to my kidneys.

Later, mainly through my own online research, I found out there were stages to chronic kidney disease (CKD), with dialysis becoming necessary when your kidneys become 10 percent functioning in Stage 5.

I had been his patient for three years, and not once did he say anything about stages or dialysis.

He would stare at my chart on the computer and say, “Your (blank) is OK,” or “You need to eat less protein.” I took “okay” to literally mean I was “okay.” When he said to eat less protein, I said that I virtually cut beef and ate only chicken and fish. He said nothing.

For my hypertension, I was told by a nurse in the PACE clinic that I needed to eat more foods with potassium, only to be told almost at the same time by my primary that my potassium level was too high. Consequences in regard to my kidneys and dialysis were not explained.

It was during this self-education that I asked Dianne Belli of Keiro to find a nephrologist with whom I could do a forum to share my experience (held March 2015). Her younger brother, Dr. Dean Kujubu, is a nephrologist with Kaiser (not at Harbor City where I am a patient). He was very patient and informative as I emailed him tons of questions. I told him I was unhappy with my nephrologist and that there may be only one I could switch to but was unsure. He assured me it was common. I have been satisfied with my new one.

Dianne Kujubu Belli of Keiro and her brother Dr. Dean Kujubu at last year’s “Chronic Kidney Disease” program at Gardena Valley Japanese Cultural Institute. (J.K. YAMAMOTO/Rafu Shimpo)

My diet became severely restricted. I had to avoid high-potassium foods, both in level and quantity; protein to 6 ounces a day, and, of course, sodium.

Recently, my phosphorus levels have gone out of the range, so I am restricted there and just started taking a phosphate binder. The difficulty, I tell everyone, is that both potassium and phosphorus are in just about everything you eat.

Suddenly, for me, foods that are good for the average person and recommended to fight diabetes and hypertension are now dangerous. I emphasize “For Me” as dietary restrictions are not the same for all CKD patients; it is very individual. And, certainly, NOT to be restricted by a person without kidney issues on the mistaken assumption that it may be proactive to limit the foods dangerous for me. (I had to write a follow-up to the CKD forum when I discovered a few friends were doing just that.)

Following my CKD forum, because diabetes is the leading cause and high blood pressure the second leading cause of CKD, I emailed a few people whom I knew were diabetic to see if they would be interested in joining a small CKD support group that would meet only three or four times at three-month intervals. The intent was to make sure they knew the seriousness of controlling their numbers, if they had either problem, to avoid ending up in my situation.

None of my doctors since I became diabetic in 1996 ever told me what would happen if I didn’t control my numbers.I was mainly told about the dangers of heart disease but never about kidney damage and dialysis and that diabetics on dialysis have a shortened life span.

The Thursday, March 10, issue of The L.A. Times had a front-page article on the diabetes crisis in California: “Almost half in state at risk for diabetes. Yet most pre-diabetic adults are unaware of their condition and don’t get treated, experts say.”

For purposes of identity privacy, I will refer to the three who expressed interest in this short-term support group as “John,” “Mary,” and “Joe.”

John and Mary were diabetic. Joe had CKD, Stage 4. Joe’s Stage 4 GFR was slightly lower than mine. A brief review of GFR: It stands for glomerular filtration rate. The number refers to the percentage of kidney function – how well they are working. Mine fluctuates between 23 and 27, meaning my kidneys are working at between 23 percent and 27 percent.

To put it the other way, my kidneys are approximately 77 percent to 73 percent NOT functioning. Stage 1 GFR is a high of 99. Over 140 is considered healthy kidney function.

Creatinine is another blood test whose number we need to watch as it seems to affect GFR. My blood tests always show these two together.If one rises, the other is also affected. In contrast to GFR, where the higher numbers are desired, you want your creatinine to be 1 or under.

For the first meeting, we talked about the importance of diet in diabetes and hypertension as well as knowing about your blood tests. I never used to look at every single blood test and the numbers. If they were so-called “in the range,” I figured all was OK. I suggested to John, Mary and Joe that they ask their doctors what a test is for, why it was ordered, and what their numbers mean.

Having just learned about the BUN (blood urea nitrogen), I went over that also as it is another important blood test to watch.

I asked them to bring their recent blood test results to the second meeting, three months off. Before that second meeting, I decided that after that meeting, I would suggest we do not have to meet any more since there was nothing more we could talk about after emphasizing controlling their diabetes and hypertension. However, a big surprise happened at that second meeting.

I asked John what his recent GFR was. He said 49. Mary, in turn, said 44, but she said her doctor (not a nephrologist) said she had moderate kidney damage and was stable. I looked at both of them, not believing what I was hearing. I said to them, “When I was Stage 3, my GFR was 32. Your 40s must be Stage 3 or at the least the bottom of Stage 2.” I didn’t have my stages chart handy, so I said I would look it up later.

I also said to Mary that “moderate kidney damage” sounds like a stage and “stable” does NOT mean “okay.” I said, “I’m stable at 23 to 27 GFR.” All that means is that I am staying within the range.

John showed me his test paper, and a line above the 49 read, “may be indicative of chronic kidney disease.” I said, “I don’t think maybe.” I told them they both need to talk to their doctors.

After they left, I went online, saw the chart, and their 40s numbers were CKD Stage 3. I copied the chart and emailed both and suggested they show their doctors and ask if their numbers are indeed CKD, Stage 3.

We had scheduled a third meeting, but it was canceled when John said he hadn’t had another blood test and Mary was attending a hypertension seminar. I told them that from now on they needed to communicate with their doctors, and there was nothing more to do. I did suggest they find out if they have dietary restrictions. If they do, and their numbers go out of range, damage to their kidneys will accelerate.

Joe’s CKD was caused by hypertension and, for him, he has no dietary restrictions.In fact, he has to gain weight because of weight loss due to other factors. So, everyone needs to find out what they need to do – not do what another person has to do.

I submitted this article because I wanted to share the experience as a red flag to readers. Not one of the four of us (Joe, too, said he hadn’t been told anything) had received information before it was too late.

According to the National Center for Chronic Disease Prevention and Health Promotion, one in 10 American adults have some level of CKD and many don’t know it: “Chances of having CKD increase with age; it increases after age 50 years and is most common among adults older than 70 years.”

I experience no physical symptoms; blood and urine tests every three to four months are the only way I know what is happening with my kidneys.

Chronic kidney disease is incurable and irreversible.

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Iku Kiriyama is a retired educator and a community volunteer. Opinions expressed are not necessarily those of The Rafu Shimpo.