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

To continue my “struggles,”

I suppose it was natural that I didn’t associate the difficulty I had in getting dental X-rays to PKD.

Dental X-rays? Yeah. To put it politely, there is such thing as the “gag reflex.”  As the 1990′s moved along, dental X-rays were getting harder and harder for me to tolerate.

If you, as a PKD patient, have noticed this, I hope this comforts you in that you are not alone!

I also didn’t make too much of noticing that my fingernails were becoming more and more brittle as time went on.

A symptom of PKD? The condition of my nails improved considerably when I was on dialysis and are almost perfect after my transplant!

In any case, my kidney function was on the decrease. Yet as many of you know, not much can be done while there is still ample kidney function! (I wish something could be done. Both then…and now! Well, you could drink a lot of water!)

At last, in 1995, my primary care physician referred me to a nephrologist, who I later found out is one of the top nephs in New York City (as published in a local magazine of top doctors.)

And the monitoring began. The blood tests for kidney function and hemoglobin, the 24-hour urine collection (in what I called “the little brown jug!”)

And the symptoms started. Fatigue. Painful bone bruises (really tough when standing on the crowded NYC subway!) And, the leg cramps. I had those bad.

Waking up at night, legs locked, forcing them to stretch only to have the muscles on the other side of the legs cramp up. The pain was quite severe.

Then the time came to inject myself with epo. I developed this whole routine of setting up a tray in the bathroom with my..er..paraphernalia and shot myself up! Well, I kept telling myself, “This is a heck of a lot better than a transfusion!”

And it helped! The fatigue diminished!

All this while still working as a computer programmer for a major bank!

What fun!

More later!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

I left off about to tell you how I met the woman who became my wife.

It was a church prayer meeting. I was new there. In walks this attractive woman. I gave her the “once over” with my eyes. Then I noticed she had a slight limp. “Oh,” I thought. “That’s a shame! I doubt she’ll be able to go hiking with me!”

Well, I was right. Although she gamely tried. She couldn’t hike.

But…as my spirituality grew, I found her to be a very spiritual person. I learned (and continue to learn) a lot about compassion and forgiveness from.

After a number of group outings in which we kind of “paired up,” we finally met at a coffee shop and laid it all out on the table. We “confessed” that we had feelings for each other, and at this stage of the game, it was silly to “beat around the bush.” I had PKD. She had a bad leg. Could we continue the relationship which had to lead to marriage or not? I knew that hiking would not be a major activity in my life for too much longer. Would she be willing to accompany me on my PKD Odyssey. She said yes.

We continued to deepen the relationship.

We took a Spiritual Development course together.

Eventually I was baptized into the Roman Catholic Church, (with much fanfare, I might add!).

Right after that was when I experienced my first (and fortunately, only) burst cyst.

Eventually, she called the PKD Foundation, and spoke directly to Dan Larson, who referred to a kind gentleman who we telephoned. This man told that he had been on dialysis and was living ” a full life.” He even played softball!

This gentlemen was very encouraging!

That was quite a demonstration of support for me by my girlfriend. It obviously brought us closer.

Four months later we were engaged,and on April 16, 1988, one year after I was baptized, we were married.

As for me, the burst cyst left me with periodic episodes of hematuria, but for the time being, nothing else.

I hope this part of my story will encourage those who may feel that because of their disease, they can’t get married.

As it happens, most of the active members of the Long Island Chapter of the PKD Foundation are (or were) married.

My Odyssey will be continued!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Having been on the “PKD Odyssey” since 1964, and communicating with others on the Odyssey, and especially now as the year comes to an end, I seem to have a desire to review my “trip” thus far.

It started off when I swung a golf club and felt a twinge on my lower right side. That was the beginning.

It led to the first of a number of Intravenous Pyelograms (IVPs) which required me to be on am X-ray table without moving for an hour. It was the first time I ever had a panic attack. There I was, flat on my back on a cold X-ray table with  this huge X-ray camera hanging over me. It was scary, to say the least.

Well, diagnosed with chronic pyelonephritis got me taking a diuretic which forced me to learn where the public bathrooms were at my college, and around New York City. (Try hotels!).

When I saw blood in my urine, I was a lot more “concerned,” and I learned that, yes, I too, like my father, who died two years earlier at age 50, had PKD. I was 22.

Fortunately I was pretty stable for the next number of years. I got my degree, started my professional life, and there were no problems.

It was in my early 30′s, going through the end of my first marriage, that my blood pressure started to rise. Well, that was par for the course. No big deal, just take some pills, and life went on.

I was healthy enough to take some interesting vacations in the early 80′s: Rafting in Alaska, trekking in India, and back kayaking in Alaska, this time above the Arctic Circle.

Going through a change in religion, converting from Judaism to Roman Catholicism brought about a deep examination of values. The Catholics I got to know taught me a lot about compassion and forgiveness, especially to oneself. I would need those lessons. Because what I had gone through so far, was nothing. The “best” was yet to come!

I’m curious.

Has your PKD Odyssey affected your personal values about what life is all about? Has your disease led to a generally optimistic view of life, or a somewhat pessimistic view?

For me, as I learn about what medical technology has done, is doing, and will do, I’m moderately optimistic about life “being worth living.” But boy, you really got to stay “on top of things!”

What about you?

info@innergameofpkd.com

is the e-mail address to send your thoughts, or add your comments to the blog post!

Thanks!

Next time, I’ll write about how I met the woman who became my wife, and later, my donor!

Stay Warm!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Yesterday I had the pleasure of attending a Holiday party given and attended by members of the Long Island Chapter of the PKD Foundation.

The amazing thing was that there was nothing amazing at all! It was a nice warm, gathering of friends and acquaintances.

If you didn’t know beforehand, you would never know by appearance that this group of people has, is, and will be dealing with PKD on one level or another.

There were people with multiple kidney transplants, people who have been on dialysis, people who will be on dialysis, kidney donors, someone who wants to be a kidney donor, and children of PKD patients who may have the disease.

It was as an attractive group of people you would ever want to meet. (Don’t forget, I was part of it! )

For those who have recently been diagnosed, I wish you would have been there to experience people who are deep into their “PKD Odyssey,” and, being members of a local PKD Foundation Chapter, also contribute to the ongoing efforts for patient support and a cure.

Obviously I’m not saying that the people at this party are not without issues. Of course there are issues. That’s life!

But this group of people is proof of the capability of “overcoming adversity.”

Normal life can be lived!

However, it often takes discipline, and persistence, and faith, and confidence to continue on the PKD Odyssey with optimism. And clearly this group of people demonstrate that.

So, thank you, host and hostess of the party, and thank you to everyone attending for increasing my sense of gratitude and hope for the PKD community!

By the way, the homemade chocolate chip cookies were great! (My wife baked them! )

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

The future is never really here, is it? Tomorrow becomes today and the next is future. We never actually get there.

What we do experience is a flowing “present.” In effect, it is always “now.”

But…our minds have the ability to create “visions of the future.” This, of course, is a great capability. Nothing would be created if were not visualized as a future accomplishment.

Our gifted minds can visualize all kinds of “futures.” Positive futures, (or positive expectations) and negative futures, (or worry, fear) are possible results of our “future visualizations.”

Much of how we visualize the future is based on experiences we have had in areas of life similar to what we are “futurizing” about.

If you have had an embarrassing experience in public speaking as a child in school (as I had), thinking about an upcoming speech will probably put you into a state of fear, even if the upcoming event has nothing to do with the childhood episode.

Likewise, an early positive experience (say, playing a musical piece at a school recital) will likely lead you to look forward to  more musical expressions.

As a PKD patient, the view of your future may be largely influenced by your early experience with doctors, and, for many of you, the PKD experience your parent has had. (This of course assumes you inherited PKD. Not every PKD patient does.) If your parent had a difficult time, you may be viewing your future negatively. (Or not at all, as was my case. At one time, I literally couldn’t ‘see’ my future!)

Habitually viewing future negatively, whether the distant future, (long range dreams and longings) or short-term future (“I fear that my numbers are not going to be good the next time the doctor examines and tests my fluids.”) certainly doesn’t put your mind-body in a positive state. The imagined future (imagined, because it hasn’t happened yet) will play a large part in how you approach life as you travel on the PKD Odyssey.

The same mind that created your “negative future” can be trained to create “positive futures.” There is no cost to quietly, persistently, and consistently tell yourself that there will be positive outcomes. As you use words in your new, “positive self-talk,” corresponding images will form in your mind. Slowly, these positive images will take hold and dominate your thinking and soon, you will be visualizing “positive futures.”

This takes a lot of practice, and a lot of support. You don’t want to be around a lot of people who are “whiners.” You want to be around people who have overcome difficult situations. If your own circle of people doesn’t provide encouragement for you to visualize a positive future, seek support from the message boards, like www.dailystrength.org and www.kidneyspace.com and similar sites devoted to Kidney Patients.

If you need more encouragement, I would be happy to provide as much encouragement as you need!

I’m here at info@innergameofpkd.com where I can not only share my experiences, but also help you create a positive future!

To The Future!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Having traveled a “far piece” on the PKD Odyssey, and confronted the many challenges that are encountered on that Odyssey, I am certainly aware of much of what you may be going through.

The challenge which I am about to present to you is one, that, if you accept it, will benefit both you and me.

I challenge you to tell me, through the “comments’ box or directly to me by e-mail at

info@innergameofpkd.com

exactly and specifically what your biggest obstacle is in your PKD Odyssey that is keeping you from having the the lifestyle you desire.

Now, I’m speaking about specific issues, like lack of social interaction, a feeling that you aren’t understood or accepted by friends and family, fear from admitting to people that you have the disease, fear of the future because your parent had a difficult time on his/her Odyssey.

What is the main block that is stopping you from feeling good about yourself?

(Please don’t tell me lack of money. That’s an issue for many of us!)

If you let me know, I will do my best to personally to “coach” you to find a resolution to your obstacle (with your permission.)

The benefit for me is that, with your help, I can “walk my talk” with you.

It’s one thing for me to write this blog, it’s another thing for me to actually demonstrate what I do to assist PKD patients overcome some of the attitudinal challenges that they have.

Let’s get together on this. I’m not charging for this. I really would like to connect with you for mutual beneficial friendships.

I welcome your PKD challenges. I so want to use my experience to ease your burdens.

Please give me an opportunity to serve you!

info@innergameofpkd.com is my e-mail!

Hope to hear from you!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Following up on my post about “frustration,” I’d like to introduce my concept of “Mind Games.”

In Neuro-Linguistic Programming, there is a concept known as “re-framing.” This is a fancy term which merely means putting a different spin on a situation.  It’s the “half-empty, half-full” principle.

In playing “mind games,” there are a lot of “What if” questions. Often they are used to “re-frame” people’s perception of the future.

“Worry” is imagining a negative future outcome. When you face upcoming surgery, your survival instinct naturally is concerned about problems. Now, in the present moment, there is nothing you can do about any problems with the future surgery, other than following whatever medical protocol is given to you.

So, what if you completely trusted your surgeon and hospital staff to perform your surgery successfully? You wouldn’t worry! You would look forward to the process of surgery and recovery and enjoying the benefits of the surgery!

Personally, I have “re-framed” going to the hospital for whatever procedure I am to undergo as “going to the body shop!” The metaphor of “hospital” equating to “body shop” serves me in several ways: It de-personalizes the procedure, shifting it from “me,” to “my body.” I feel less “invaded” in this mind-set. I also shift the concept of “surgical procedure,” which can be a bit intimidating, to “body repair,” which is more tolerable for me.

When I go to my nephrologist, I mentally consider it going to my “inspector,” who checks me out for problems. Again, this re-frame de-personalizes doctor appointments for me.

Another use of “mind-games” is for when people ask the pathetic question, “Why is this happening to me?” Well, in many situations, you darn well know why! If a person gets lung cancer after smoking for forty years, well, there’s the answer!

However, if it’s something like having “de novo” PKD, (you have the defective gene and your parents don’t), the “why” question naturally comes up. my response is: “If you knew why, what difference would it really make? You still have to deal with your disease. So, consider the ‘reason’ as one of those ‘mysteries of life’ and place your energies into obtaining and maintaining as high a quality of life as is possible for you, instead of wasting it on seeking a reason which may be both unknowable and unhelpful.

Is playing these “mind-games” easy? No. It takes practice. But I think you can see the benefits of using your mind to “re-frame” what appears to be negative into at least a less threatening situation for you.

What ‘mind-games” do you play?

Keep minding your mind!1

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Many of you will remember the Rolling Stones’ great line, “You can’t always get what you want!”

Were truer words ever spoken (or sung?)

In communicating with PKD patients, I have noticed that, understandably, there are high levels of anger and frustration.

In this world, there is an awful lot to get “ticked off” about, PKD or not!

Yet, are some of us creating some unnecessary frustration for ourselves?

As a youngster, I was not very athletic. And in New York City, the social “pecking order” for boys is based on your performance in the playground.

I was the last kid chosen for punch ball, stick ball, or anything else. I didn’t like that. It hurt my self-esteem.

Eventually I accepted the fact that I was not athletic. And (here’s the point) I stopped comparing my performance to the stronger, more athletic kids!

I befriended other less athletic kids and developed other interests. (Building plastic model airplanes.) My self-esteem increased, my frustration decreased.

Here’s the interesting part: My less-athletic friends and I still wanted to and did play ball. But because we were no longer competing with the athletic kids, our skills improved! By the time of the mid-teen years, most of us could hold our own with the so-called athletic kids!

What I learned is that comparing your self to others must be done carefully, if at all. True. Having models can be helpful. For me, as a Life Coach, my model is Tony Robbins. Clearly I’m not in his class. I learn from him, but I don’t compare myself to him.

As for PKD, I would seek out success stories. But not to compare myself with another person. As we all know, every case of PKD is unique.

I have learned not to compare myself with anybody else! In areas of growth, I look for guidance, but than I compare myself to me!

How helpful do you think it is to compare yourself with a healthier person? Or beating yourself about the things you CAN’T do?

Have compassion on yourself! Do what is for you to do and do it the best you can! Don’t worry about what you can’t do or can’t control. Because, by definition, YOU CAN’T DO IT! So let it go!

There’s enough frustration in this world without needlessly adding to it!

There! I said it and I’m glad!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming