New Book, Next Chapter

Here is the next chapter of my new book on kidney disease, “timestamp”

Hit me again?

So I went in to Kaiser to see a Nephrologist. This was new territory for me. I was concerned, and so I ought to have been. The specialist, in retrospect, glossed over some items, and later, too, the nurse; they were very good, but I suspect they have to manage patients who catastrophize their situations, not to be harsh.

While I am somewhat of a hypochondriac and can be fatalistic at times, I am also a survivor and an optimist. 

The doctor initially made CKD seem like a rather orderly walk in the park. He outlined my situation in neat bullet points, metaphorically:

You opt for transplant or dialysis

I opted for transplant

You wait until your GFR is ⋜ 19You get on a waitlistAfter transplant you’re home free

I went home and told my wife, 

“I’ve chosen transplant, everything will be fine. The doctor said I’d have no problem getting a transplant through Kaiser. I’m home free!”

Normally I was more cynical than to believe all I was told, but naivete in this context might not be all bad. When I later visited the nephrology nurse, she sat me down for an hour, showed me a depressing video about the lowly estate of the CKD patient, and tried to encourage me about my situation.

She is a very good nurse and person, but the initial nurse visit bred apathy and discouragement. She noted:

It can take 2-5 years to get a donorYou can reject the new organDialysis is often needed priorLife expectancy is maybe 15 years with dialysis

My subsequent visits with the nurse have been excellent, and the doctor is also good, but I disagree with how they “eased” me into the world of CKD. 

It’s not their fault my kidneys declined, but I definitely think earlier diagnosis could mean a longer and higher quality of life and a better preparedness for many.

Concerning dialysis

The nurse also educated me on the three dialysis options:

PeritonealHome dialysisIn-Center dialysis

With peritoneal dialysis, you have a better life expectancy, it is easier to travel, you don’t need a machine, no needles needed, transition to transplant is better, and more

On the negative side, you have to do it every single day, bathing has limits, you can gain weight, and you need storage space for supplies. There is also a potential for infection.

With home dialysis, survival rates are also improved. You don’t need healthcare professionals on a constant basis. You can have greater comfort and privacy. There is more autonomy.

However, you have to have a partner to monitor you, trainings must be attended, and you have to contact a hemodialysis center if you have questions. You need to store and maintain a machine as well.

If you are having dialysis done, In-Center, then you’ll have trained professionals assisting you, and you can make friends with fellow patients in some cases.

The downside is that you have to work with the center’s schedule, you have to travel at least three times per week, and you can’t have family present.