Jeff's Journal

The Dreaded Phrase

Two weeks ago Friday, I heard the words I have been dreading to hear for the past several years. I have done everything I know to do to run from the phrase, but on Friday, May 13, there was no escape. I tried, but when I met with the doctors, their words were, “Mr. Waldo, there are no other options. It is now time to start dialysis.”

The "time-has-finally-come-to-do-dialysis" phrase is not an easy phrase to swallow, at least not for me. I have been battling the poor genetic endowment of bad kidneys for five LONG years. I have done everything the doctors, specialists, holy rollers who have anointed me with oil have told me to do, but somewhere deep within I have known all along, there was no escape, but I have thick denial. It continues to grow thinner by the minute.

“Something” was determined to be wrong about nine years ago and five years ago, “something” got a name. The short term is focal sclerosis. FS is a kidney disease where the kidneys scar for some reason and as the scarring increases, the ability of the kidneys to function decreases. The first four years while we sought a diagnosis were really not a battle, but once it had a name, I had a foe and I fought it for five years, but this spring, things began to fall apart and I lost the battle. I hate losing.

The symptoms were increasing. I was as sick as I have ever been. Fatigue was pretty severe. It took every ounce of my energy to get out of bed. I’d do as much as I could and then come home for lunch. However, the uremia creates a bad taste in your mouth and you do not have an appetite. So, I’d just come home and sleep through lunch, get up and head back to work, come home and crash again. My color was ashen. I’d look into my eyes and they were pretty hollow. People would just stare at me, wondering about me. I lost weight and felt horrible all the time. I'll leave the other symptoms for another time.

The bottom started to fall out this spring. I dreaded knowing my options were about to be limited to three, well actually four. ESRD, End Stage Renal Disease, is a pain. The kidneys do so much for the body’s systems that once the kidneys go, there are other things that start to get messed up. There is no cure for ESRD. Now that I have crossed this threshold, the options open to me are: peritoneal dialysis, hemodialysis, transplant or death.

Peritoneal dialysis is dialysis through the peritoneal cavity. A catheter is inserted into the abdomen and after a time of healing, you use the catheter as the access for putting the dialysate into the body. The dialysate is transferred into the peritoneal cavity via the catheter and allowed to dwell. Osmosis takes place during the dwelling and after several hours, you drain the contents out of the peritoneal cavity and refill. You do this about 4 times a day and during the night with a machine called a cycler. You can find out more at this website, if you are interested. Peritoneal Dialysis

The other dialysis is hemodialysis. That is where an access is created so that blood can be taken from the body and put through a filter and then pumped back into the body. Most folks have a fistula or a graf put in their arms, but I have a tesio catheter in my chest. Here is a site about Hemodialysis.

The other option is a transplant. Here is information on a kidney transplant. The last option is to do nothing and wait to die. Fortunately, there are options. About 40 years ago, the only option available to my grandfather was to die. He died of ESRD when I was a kid and I have found a type of identification with him through all this. I remember his breath, I remember how his color was inhuman, I remember how weak a strong man became and I remember him pretty much shriveling up in a corner hospital bed and wasting away in a short amount of time.

I have chosen not to die.

In February/March, when things were beginning to fall apart, I got sick enough to apply for a kidney transplant. The plan and hope was to get approved, get on the list and search for potential live donors. If you wait for a cadaveric donor, it could take years. Several people at church had offered to donate and once in the process, the hospital takes the donors one at a time until there is a show stopper and then it is time to move on to the next donor.

After assessing all the potential donors, seven had my blood type and we started with donor #1. At the moment, we are still with donor #1. I was evaluated in March and approved in April and donor #1 started the evaluation process at the end of April and is still being evaluated. The hope was to by-pass dialysis and jump to the transplant, but that did not happen. Friday the 13th, the decision was made to move to dialysis. By the next Wednesday, I was in the hospital for the day to have surgery to implant two lines in my chest. One line is hooked to an artery in my heart and blood flows out of my body to the dialysis machine while the other line is spliced into my jugular vein for the blood to return to my body.

The Sunday before surgery, I was listening to Mahler most of the day. Specifically, his Resurrection Symphony #2 movement 5 that has these lines:
O glaube, mein Herz, O glaube: es geht dir nichts verloren!
Dein ist, dein, ja dein, was du gestritten!...
Was enstanden ist, das muss vergehen!
Was vergangen, aufersteh'n.
Hör auf zu beben!
Bereite dich zu leben!
---
Believe my heart you have lost nothing.
Everything you have longed for is yours, yes yours....
What has been must go.
What has gone will come again.
Stop trembling!
Prepare to live!
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It is time to stop trembling and prepare to live, a whole new way.

posted by Jeff Waldo @ 4:28 PM