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What I Learned when My Kidneys Failed-Part II

September 11, 2013

Previous Entry-Introduction to Renal Failure

As 2011 progressed, I was becoming very ill with the effects of renal failure. I was putting off the dialysis decision as long as I could, because I had not yet decided if I wanted to put up with the serious life compromises that dialysis would entail. I was unsure if life on dialysis was worth living.

We all die. If this was my time, then so be it.

I was adamant about not asking anyone to be a kidney donor. No one owes me anything, especially not something like an organ. Yet the donors started coming forward and entering the UCSF screening. It occurred to me that if someone volunteers, that is another story altogether.

It turns out that I do not have a particularly easy blood type to match, at least in my donor pool. Non-matching blood types can still be a donor, but it must be through a paired exchange through the National Kidney Registry (there will be more on this later) 

In October of 2011 a good friend stepped forward and offered to donate his kidney to me and he was a blood type match. For the first time since I became sick, I began to feel hope.

Once passed the preliminary screening, the real testing began. I was astonished at how difficult it is to be a donor. Donors face a battery of testing that is rigorous, time consuming, and, at times, uncomfortable. The only testing I was subjected to was to make sure that I would survive the surgery. Piece of cake, really.

The screening is a complicated and time-consuming process. But in every step of the way, this donor passed with flying colors.

Until the last step.

This donor was screened out just before we were to schedule the surgery. The reasons are not important, and I am not allowed to know because of confidentiality requirements.

My choices now were simple and stark. I could die, which would not have taken long at this point. Or I could accept dialysis and hope for a paired exchange with one of my non-matching donors.

It turns out that hope is a hard thing to kill.

There two kinds of dialysis-hemodialysis and peritoneal dialysis.

I choose peritoneal. It could be done at home, and most of the heavy lifting would be done overnight while I was sleeping (at least theoretically). This would allow me to continue working and allow me to have some independence from being on a strict schedule dictated by the dialysis centers, which I consider dreadful.

This type of dialysis requires careful management, due to the constant risk of infection. A catheter is surgically implanted in the abdomen which opens a portal to the peritoneal cavity. Since white blood cells never access this cavity, the risk of infection is real and it is persistent. Peritonitis is not only a constant threat, it can be fatal.

My catheter was placed on May 10th. By May 23rd, the incision had healed enough for me to start using it.

I started with manual fluid exchanges (4 per day and overnight). Within a few weeks, a machine called a “Cycler” arrived. This would allow all of the necessary fluid exchanges to be done overnight. Whether manual or automatic, the rhythm of my life became dominated by the “drain, fill, dwell” cycle.

Peritoneal dialysis requires careful management because of the constant risk of potentially fatal infection. Every time the portal was exposed (a requirement to accept and drain the fluid) required an exacting disinfectant routine. Also, the site where the catheter left my abdomen required constant care to avoid infection at the site and prevent damage to the catheter itself. I spent at least an hour a day with these procedures.

The overnight fluid exchange presented its unique challenges. The Cycler was programmed to provide for a nine hour cycle. Since I needed to be up at 5:30am in order to go to work, the cycle had to start relatively early. This meant I needed to be attached to the machine no later than 8:30pm every evening. My friends soon got used to me exiting all manner of social engagements long before anyone else. Even when people were visiting my home, I had to excuse myself before the evening was over.

The machine itself was a challenge. Any number of things could cause its alarms to go off. Some of the alarms were easy to resolve and some were quite mysterious. All resulted sleep interruption.

What did I get for all of this labor and sleep deprivation? My mind cleared and most, but not all, of the effects of renal failure were mitigated and I could continue working. This was my life for a year. Was it worth it? Absolutely. Would I do it again if I had to? Without a doubt.

I and one living donor went on the paired exchange program on August 13th. A second living donor was added in the winter, and  third living donor was added in the spring.

Now we wait.

Next Installment: The Big Show


From → Health, Uncategorized

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