Tuesday, May 31, 2005

Waiting On Wednesday

The final call did not come today. Instead, a call for one more test, a six hour test and another day at the medical center. Donor #1 is going WAY beyond the call of duty. Hopefully tomorrow something conclusive will emerge.

The transplant coordinator called today. She is optimistic this thing is going to go forward and on June 7 we will have a transplant. They are starting me on the anti-rejection and immune suppressant medicines beginning Thursday. In essence, I become an AIDS patient as the drugs suppress my immune system. The plan is to keep the recipient alive just enough to not kill the donated organ and then find the balance between the recipient and donated organ survival. Thursday I go into seclusion for a couple of months. Howard Hughes time. Have any Kleenex boxes?

Dialysis is getting better. The recovery takes a while as I am worn out when the four hours are finished. After the three hour mark, it is as if every cell in my body is vibrating. The entire epidermis tingles. The sensation of vibration finally calms in the evening in time to go to bed. I’ll endue this because I know in the morning I’ll feel much better.

Monday, May 30, 2005

Tuesday’s Potential

Tomorrow is Tuesday. It will be another day in my new routine. I’ll try to get to work by 6:00ish, meet with men’s groups at 6:30 and then try to finish some budgets and then check in to my chair at 10:00 am and get hooked up, but it is a day that has new possibilities.

I do a lot of phone calling while doing dialysis. I do calls until I start the shivering. After about 2.5 hours I cannot help but shiver and listen to the hum in my body. I don’t know if it is electrolytes finding their new balance or that the blood is colder coming back in to my body and it drags my body temperature down and it is just cold. This leaves the last 1.5 hour in the chair to be the longest hours of my week. There is a clock on the wall and I just count down, “One hour, thirty minutes. One hour, twenty-nine minutes. One hour twenty-eight minutes.” and so on. “They” say it will get better.

This Tuesday will be an even longer Tuesday. Tomorrow is the day I get word on about a month’s worth of work. Donor #1 did the final test last Thursday, but the doctors had already departed for the holiday weekend. The docs are gone today for Memorial Day and it will be Tuesday when they get back and read the tests. If the tests come back positive, then donor #1 has a decision to make.

Donor #1 is a bit shy at the moment. He doesn’t want the notoriety. There will be time to give him his due. He is one of my best friends and for the past 15 years we have shared life, but the decision he may have to make is if he really wants to share his life with me in a more profound way than we have ever shared. If this test comes back positive, my good friend needs to decide if he wants to surrender a viable working organ that is essential for his health to me.

He is also a little concerned that there may be a show stopper. The word tomorrow may be that there is something that will prevent the transplant to progress forward. I can see the concern in his eyes and he helps me be centered and cautiously optimistic. I see concern in his eyes for several reasons. One because he may have to pony up a kidney, but also because he has joined my journey. He has watched the symptoms take their toll on my life for the past five years. When needed he provided the right diversions to get my mind off what was going on. He has also helped me see brighter days when all I could see was dark days. He is one of the most intelligent individuals I know and I am not sure if it is logic or love that motivates him.

Tomorrow has potential. I’ll make phone calls, but I’ll wait for just one that will direct the course of my life. If it happens after 2.5 hours in the chair, it will start a whole new countdown with all new types of shivers.

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!
------
It is time to stop trembling and prepare to live, a whole new way.

Sunday, May 29, 2005

Week 1

It has been one week since I started dialysis. My time “in the chair” is Tuesday, Thursday and Saturday from 10:00 am to 2:00 pm. I was anxious the first day. I had had surgery the day before for the access to be implanted into my chest. So, here I was in this clinic of loungers with two tubes dangling out of my chest not sure I was ready to start the next steps, but without any other choice.