The Odyssey continues…
With the symptoms increasing, the time finally came for my nephrologist to call the surgeon (who happens to be the chairman of the Dept. of Surgery) to schedule A/V fistula surgery for me. (At that time, it was called the Cimino fistula, named after Dr. Cimino who developed it, and who later stated Calvary Hospital, the leading palliative care hospital in NYC.)
This was June, 1997.
I had asked my nephrologist back in March , 1997 when he thought my kidneys would fail. He said he normally doesn’t offer that information, but since he felt I was “mature(!)” enough to deal with it, he estimated I would need dialysis by Sept. 1997.
So, I had the fistula surgery, and after the wound healed, I had to exercise it by squeezing one those hand-exerciser balls. That was ongoing.
As the summer went on, the symptoms got worse…fatigue, cramps, and…for me, the worst, nausea.
When ever my stomach was empty, the nausea would hit. My doctor suggested that I have dry crackers at my desk at work and to eat a few when I felt nauseous. It helped quite a bit.
I was really starting to feel quite sick. Between fatigue, cramps, nausea, dry heaves, shooting myself up with epo, I knew the time was coming close.
Having seen videos of hemodialysis and peritoneal dialysis, I figured that in-center hemodialysis (the only option in 1997) was for me. The center was only about 5 miles away.
So, when the time came, the ducks were pretty much all in a row, including insurance approval, and getting hooked into Medicare. (Working for a major bank helped a lot. It’s why I continued to work there in spite of a negative work environment. Keeping the benefits was more important than “professional satisfaction!”)
So, one day when I came home from work, there was a message on my phone message machine. I heard the voice of my nephrologist. His first words of his message?
“Don’t panic!”
What an amazing first two words to hear from a doctor!
He told me to report to the hospital for hemodialysis. The first two weeks of hemo were done at the hospital first to better monitor my response, and second to get my place scheduled at the center.
By the way, my nephrologist predicted that my kidneys would fail by Sept. 1997? My first henodialysis session was Aug. 17, 1997.
Not bad, Doc!
Peace and Blessings!
And Happy New Year!
Coach Richie Perl
Certified Professional Coach
Certified Trainer of Neuro-Linguistic Programming
I’m glad you’ve shared this odyssey with us.
Hi, Lisa!
Thanks!
My intent was two-fold:
1- To share my experiences in order to show pwople “where I’m coming from” as a Life Coach, and
2- To remind me of what I have to be grateful for!
Peace and Blessings!
Coach Richie Perl
thanks for sharing your experience..it makes me feel like i’m not so alone…i don’t talk about pkd at all to my family..i’m not quite sure why..i think it’s because i don’t want to scare them or maybe even myself..not sure
Hi, Michele!
You are very welcome!
You make an excellent point!
On the one hand, talking about the burden of PKD does relieve some inner pressure.
On the other hand, as you talk about your burdens, your focus is on those burdens, increasing your awareness of them.
That’s why people have to be careful about “support” groups; they may be helpful for some, but not for others.
Again, as so often, it comes down to the “Serenity Prayer.”
Peace and Blessings!
Coach Richie Perl
I’ve been doing a lot of praying lately..I just hope God is hearing my prayers.
Glad all seems to be going well. Gives me hope.
Hi, Michele!
I hope God is hearing your prayers too!
I’m wondering how not expressing your feelings to your family benefits you.
You say you don’t want to scare them.
Have you ever thought how much they will be scared when your disease progresses to the point when you might actually NEED them to be “on your side?”
It would seem to me that expressing what you’re experiencing, if done in a kind, matter-of-fact manner, won’t scare them, and, with time, as they “digest” what you’re going through, that they will be more understanding and supportive!
I’m also wondering if YOU’RE the one who is scared!
There is nothing wrong with being scared!
The idea is to reduce the fear with education, understanding, and the sense that many other people are, and have been on the same PKD Odyssey as you!
The first step, Michele, is to be honest with yourself.
If you’re scared, admit it! Being scared is one thing. Adding the stress of trying to fool yourself and others is another thing, and not a helpful thing.
Let me invite you to contact me privately at info@innergameofpkd.com to see if together we might be able to reduce your fears.
Peace and Blessings!
Coach Richie Perl
Hello. Appreciate your site. I read it regularly to see the most recent articles. Extremely informative article.