A rant on expectations

From my new book on Kidney Disease…

So in the beginning, I was asked a simple question. It was as though I was at the drive-up window at Jack in the Box, and I got to decide if I wanted French fries or onion rings.

I had been diagnosed as having Stage 3B Kidney Disease, and I was scheduled to meet via phone with the Nephrologist or kidney doctor.

I answered my cell phone and my Nephrologist gave his preamble, indicating some key points about the road I was now on, and asked me if I wanted to get a transplant: New kidney, or if I wanted dialysis.

Now I would think that most anyone would prefer a transplant. There might be a few who did not believe in transplants. Jehovah’s Witnesses might not, because they don’t even get blood transfusions last I checked, as they feel their blood would be tainted. But then, they wouldn’t get dialysis either; I feel badly for them. But I would guess there are some others who would opt for dialysis for whatever reason.

But think of it, you could be wired up to a machine overnight, or several times per day at home, or a few days per week at a remote location. This is dialysis. Life expectancy is said to be 10-15 years from what I have read.

Or you could opt for a kidney transplant. The life expectancy might not increase that much, but if the transplant took, and there were no complications (which I understand can occur), you are home free, and do not have to be tethered to a device to cleanse your system for many hours each week for the rest of your life.

Seems like a gimme, no? Transplant.

So I said I’d like a transplant.

Now the doctor did mention transplant would take some time, and that I MIGHT need to be on dialysis for a little time if my GFR fell too low while I was waiting for some angel to drop a kidney in my lap, but the choice between dialysis and transplant was presented as a simple choice, “Fries? Or Onion Rings?”, here dialysis or transplant.

The same doctor said he felt I’d have no trouble getting a transplant in time, but a year or two later, when my GFR had (probably expectedly) gone from 33 to 23, the doctor was not nearly as optimistic. He said I was doing well under the circumstances, but the circumstances were not good. But nothing unexpected or adverse had occurred. I had the same condition that was taking the expected course. So why the change in outlook?

My nurse had told me depressing things in our subsequent consult, but again, the staff of the hospital seemed inconsistent in their messaging. Was the staff thinking I was going to off myself because they told me the outlook was grim?

I had no intention of doing so, but the inconsistent messaging is hopefully not so poor with other patients. I appreciate my doctor and nurse, and commend them for their sympathy, but I am in this fight to win, and whether I win or lose, I need to know where I stand, but recently my doctor seemed grim about the whole thing. Maybe he sees a lot of death and needs to be encouraged.

So if someone presents dialysis versus transplant, know that the choice may not be up to you, but you can assert your preference and try to map things out and follow through as best as possible.

I work in sales support, and in sales, expectation is key. I was selling a product that took 3-6 months processing before the company was able to permit operation of the system/product. If salespeople glossed over that to make the sale, and it took on the long end of that timeline, which happened at times, the customer would be livid. 

I always gave the customer the worst case scenario, and was firm and direct about it. That way, if things took as long as possible, they might not be happy, but their expectations were clear and things went relatively well.

Nobody’s perfect. I just wish the medical profession would be straight with people. Maybe their ability to assess the risk of self-harm or disaster potential was mistakenly applied in my situation… so they were maybe true to their hippocratic oath to protect me, by being less than straightforward…