At first, I didn’t.

They were a source of pain and some embarrassment.

They got in the way of my male “macho” self-image.

They were the points of my vulnerability.

I hated them, and always referred to them as “my damn kidneys.”

This was so for over 40 years.

Now, older (definitely) and wiser (maybe?) I realized that “hating” my kidneys was not the best relationship I could have had with them.

Over those 40 years, I lived!

Those “damned” kidneys were keeping me alive, doing their job under increasingly difficult circumstances!
They had no choice in being “built” with faulty genes!

It wasn’t fair for me to “hate” them!

It wasn’t even helpful. There is no advantage in “hating” a part of yourself!

On the contrary. It is helpful to nurture then to the best of your ability.

If there isn’t much that you can do for them physically (and you can maintain your medical and dietary protocols!), you can at least nurture them mentally.

You can mentally vision your kidneys, cysts and all, and develop a compassionate relationship with them. Yes, even mentally “talk” to them, letting them know that you know it’s not their fault they they are failing.

When you refer to them, consider saying, “my hurting kidneys,” or “my diseased kidneys.” This takes away any negativity you used to have toward your kidneys.

Now, you may think the above “mind game” is silly. You have every right to think that if you are having difficulty on your “PKD Odyssey.”

Yet, when I learned to do this as part of my NLP training, I felt a noticeable relief of internal stress whenever I thought about my disease, which was…often!!

The point is that in “loving” your diseased kidneys, you become more aligned, with less internal conflict which takes a toll on your energy.

Being aligned is a definite aid in accepting your situation and also increases your courage to move forward along your PKD Odyssey.

And that goes even more for a transplanted kidney!

Stay Aligned!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

I don’t know about you, but when I think of the word “support,” I think of something like a beam or a girder holding up part of what is a somewhat complex structure. If that beam or girder fails, the entire structure breaks down.

It seems to me that, since we are not born with all-knowledge, nor do we ever attain a state of all-knowledge, at some point or another, we need the support of individuals and institutions to maintain our structure of existence.

Our complex society is largely made up of segments supporting other segments of that society. Parents (hopefully) support children, employees support employers in delivering what customers expect, and the employees get compensated, allowing them to support their families.

Individuals are also complex. Just notice all the things that can and do go wrong with the human organism.

Also notice how long it takes for a human to become independent compared with animals. It’s a tough and complicated world!

So, what constitutes support? Instruction comes to mind first. We even have to learn how to walk and talk. We even need help in learning how to eat!

Developing coping skills with excellent assistance is tough enough.

What happens when an individual is in a situation where instruction, or models, are in short supply?

Clearly, people suffering with diseases like PKD can relate to being in this position. Even family members with PKD can offer limited support because they are “coming from the same place!”

For me, the first element of support is being listened to. Every case of PKD is different. There are times (even now, 12 years after my transplant) when I feel the need to “vent.” (Fortunately, the need is now rare. There were times when I wanted to cry every night!)

The second element for me was to be understood. This seems to be difficult for people who are fortunate enough to experience excellent health. However, there are times in which we need such people to really understand us. This includes medical professionals.

Next, to be accepted. I never expected this from everyone. I was cool with this. Perhaps because in my younger days I was not the most accepting person in the world. I hope I’ve improved in that area!

While this doesn’t sound like too much to ask for, it seems that, from the evidence from the on-line message boards, that it is a lot to ask for as many PKD patients aren’t getting that level of support!

So I have a question:

Are you getting, or have you gotten, those three aspects of support mentioned above?

I’d love to hear your responses by adding your comments in the comments box or e-mailing me at

info@innergameofpkd.com .

I hope I’ve communicated through this blog that you have my support.

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

“You have a lot of potential.”

How many times have those words been spoken. Just writing them gives me a queasy feeling.

For a PKD patient knee-deep in physical symptoms, emotional and financial stress, doctor appointments, and all sorts of other activities designed to keep him/her functioning, thinking about his/her potential may be the last thought on his/her mind.

Yet, human beings have a fantastic capability to fantasize. We dream big dreams. Having PKD doesn’t diminish the dreams we have. And this is good. Our minds are built to explore, examine , and discover.

On the other hand, we are still human beings, with limitations. Some with more than others. Consider how many charitable causes there are!

So, how does a PKD patient determine the level of life expectations that can reasonably be met?

Everyone is different, and every case of PKD is different.

You don’t want to “settle” for a lifestyle that is less than you can achieve. Nor do you want to “shoot for the moon” and be disappointed, frustrated, and perhaps even bitter that you didn’t make it.

As a boy, I very quickly learned my place in the “pecking order” that exists in the “playground.” I knew I wasn’t very athletic, but I could hold my own, and made my contribution by learning “communication skills.” (Translation: strategic insults and threats to kids who seemed belligerent. Such is life in the playground!)

Interestingly enough, in many ways I employed a somewhat similar strategy in the corporate world: I knew my place, developed great expertise in that place, and used that expertise as a “weapon” against those who seemed “belligerent!”

As a PKD patient, going through all the stages, in order to determine what level of lifestyle I was able to shoot for, I developed a “playground strategy” in which I would constantly assessed my physical, emotional, and “risk-tolerance” level.

“Do I feel strong enough to travel here?

“Do I feel that I can visit people for dinner when I can’t eat or drink that much?”

“Will I be the subject of conversation and either be pitied, ignored, or misunderstood? Do I want to put up with this right now?

“I obviously can’t think of looking for another job when my health insurance might be in jeopardy.” (As it was when I was going through this.)

These decisions are what makes up our lives. The more we know ourselves, the more we know to what level of expectation we can aspire.

Do what you can do.

Don’t do more.

But don’t do less!

And reach the potential that you were meant to reach!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

I’m revisiting the subject fear for two reasons: 1) I think that in 2010 we have advanced to the point where people can learn to manage their fears, and 2) I read on some of the message boards that fear is ever-present.

As I mentioned previously, fear is good. It helps us survive.

But I believe that uncontrolled or unmanaged fear is not helpful at all.

Just because we are afraid of something that really doesn’t threaten our survival doesn’t mean we have to stay in the state of fear.

Again, I am NOT talking about a serious threat.

I’m talking about fears which prevent people from taking beneficial action!

I’m sure there are reasons why people in their 40′s or 50′s would refuse to go on dialysis when their kidneys fail, but I don’t know what they are.

If their fear of dialysis is based on, say, their negative perception of what a loved one may have undergone, the original fear is understandable, but clearly not helpful for them to maintain a high quality of life!

There is more evidence out there that such fearful people would do well to examine before making what would most likely be an irrevocable decision!

Obviously there are thousands of people who are or have been on dialysis that can attest to the fact that it is quite possible, and, with proper care and compliance, quite probable to live a high quality of life.

Are there setbacks? Of course! Setbacks occur in every facet of life! Careers, relationships, and yes, health!

Does this mean we don’t engage in the general activities of life because something might go wrong? No! Life is meant to be lived!

Our fears can and should be examined if we want to have the highest quality of life possible for each one of us.

Yes. Being a dialysis patient is not something you want to “grow up and become.”

Neither is going for a transplant or donating a kidney for that matter.

These activities do generate fear!

But you don’t have to stay in the state of fear!

All I’m suggesting is to take a look at your fears as objectively as possible, discover the source of each fear, and seek more evidence to diminish or even eliminate a fear that may keep you from a fulfilling life!

If you need assistance in discovering the source of your fears, please let me know at

info@innergameofpkd.com and we can set up a free Coaching call.

I’m afraid that this the end of this post!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

I’ve been writing about the physical and emotional highs and lows of the “PKD Odyssey” for sometime now, and for this post, I would like to list some questions that would be asked if you were to work with me as a Life Coaching client.

These questions are just sample questions. Obviously, an individual’s situation would bring up questions of a very personal nature, which, of course, would be the point of being coached!

As you read these questions, consider taking some time to allow your mind to begin to come up with whatever it comes up with in response to each question. You never know what insight might arise!

• Who or what is holding you back the most right now, and how? (Include PKD-related and non-PKD-related factors in your answers.)

• How much stress are you under right now and what is causing the stress?

• What are ten things you are tolerating the most?

• What about you makes your life work as well as it does?

• Who are the key people in your life and what do they provide for you?

• What have been your three most fulfilling accomplishments in your life so far?

• What was the biggest thing you have had to overcome?

• How have you failed, and how did that affect the way you think and act today?

• How have your attitudes about people and life changed over the past ten years?

• What has made you the most successful or powerful?

The answers to these and similar questions make up much of what Life Coaching is all about.

To state the obvious, life is complex. And even more so when you’re on the PKD Odyssey. Oftentimes, it helps to “talk things out.”

The conversation that the above questions generates will lead to greater clarity about your life, your strengths, your weaknesses, your true likes and dislikes.

Perhaps more importantly, this conversation will help you discover and uncover you dreams, yearnings, and longings.

With structured action, many of these dreams, yearnings, and longings can be realized.

I hope this list of questions do what questions are supposed to do:  Get you to…THINK!

Stay questioning, my friends!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

When a kidney disease patient faces dialysis, it is normal and natural for that individual to experience and express fear.

First of all, being told you will need dialysis to stay alive is not the most pleasant piece of news to receive.

Also, the circumstances under which you receive that piece of information will greatly contribute to the way that you will react.

Thirdly, if you happen to have or have had a parent who has undergone dialysis, your reaction to the news that you also will need it will be affected by your perception of what your parent went through.

In other words, the fear you are experiencing about the prospect of  needing dialysis to stay alive is largely dependent on your perceptions. Facts are only a small part of what contributes to your fear.

The capability of experiencing fear is good. It keeps us out of trouble. Sometimes, it keeps us out of pleasant experiences. How many times have I turned down an invitation for a new experience because I was “afraid” I would make a fool out of myself!

But dialysis is a different matter.

Having fear of dialysis puts your whole body-mind-soul in a state of avoidance. Think of a 2-year old baby, who, after experiencing some injections from her doctor is subsequently presented with an “opportunity” to go to the doctor again. You will be witness to a great “avoidance” response!

Guess what? We are still that 2-year old baby! We all want to avoid pain!

In this case, however, avoiding dialysis means death!

You cannot escape it!

I will not tell you that you are “supposed” to eliminate fear. I wouldn’t recommend eliminating fear. As I said, fear is a good thing when the fear is “rational.”

Yet I will recommend reducing the level of fear towards dialysis by means of educating yourself about dialysis. Learn about dialysis in general, the two main modalities of dialysis, hemodialysis and peritoneal dialysis, along with the means of applying these modes.

There are plenty of websites which have the information you need to get a better understanding of what dialysis is all about.

And, perhaps even more importantly, connect with people who are currently undergoing dialysis. Most of then will be happy to share their experiences with you if you approach them in a friendly, “ready, willing, and able to learn” attitude.

Knowledge conquers fear. Take advantage of the sources of information available to you. And if you need to talk to someone about dialysis, I can probably help you connect with someone who will share his/her experiences.

Remember, fear = False Evidence Appearing Real.

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Last time I focused on the frustration of living with a disease that makes it feel like you are carrying a burden that can’t be put down.

And, in fact, it can’t ever be totally put down. Even with a successful transplant, there is the “burden,” or responsibility of keeping up with the meds, maintaining generally good health through diet and exercise, and making sure that other health practices are maintained, like seeing the dentist, and, for me, the dermatologist, and of course, the primary care physician for continual monitoring of “vital signs,” and things like the health of the heart, the blood vessels (watching for blockages), and the rest of the bodily functions.

Now, clearly, the “burden” is greatest when approaching and reaching kidney failure, as it continues to a greater or lesser degree for dialysis patients.

Enduring physical symptoms which can only partially be relieved, and the tiring effects of dialysis along with its limited diet is not a fun way to live.

The actual burden of this way of living can’t really be relieved. But the perception of the burden can be modified, at least for periods of time, by involving yourself in your passion!

What is an area of interest, or hobby, or cause, that you can get seriously involved in?

For many people, the obvious one is doing work for The PKD Foundation. (I, myself am looking to get more involved, if they’ll have me! )

For people with artistic inclinations, creating expressive works of art is both cathartic, and the result is something tangible.

One doctor told me of someone who wrote a book while on hemodialysis over time.

Clearly, having a passion in some area takes you “out of yourself,” such that your mind doesn’t dwell on the “weight” of burden which is carried on the PKD Odyssey.

Personally, I had my job to keep me “involved,” as well as pursuing my own “spiritual path” to help me not feel the full ‘weight” of the burden at all times.

So why not take a few moments and determine what your passions might be, and consider one to really “get into,” and develop the mind-set that even though your PKD burden may be tough, you know that you are contributing to the betterment of the world in your own way that’s meaningful to you!

As Tony Robbins says: “Live With Passion!”

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

You don’t have to be a PKD patient to get to the point where you feel you’re “at the end of your rope.”

There is so much in life that is not in your direct control including your genes! Even people in your circle who are supportive are still separate individuals and need their own space too.

It’s no wonder that, after a while of feeling that “things aren’t going your way,” that your level of frustration increases to the point of being intolerable.

Anger, depression, confusion, sadness, and other similar emotions which come up usually get expressed. It’s like opening a pressure valve to “let off steam!”

The question is, can this “de-pressurization” be done in a constructive manner?

We all the TV scene in which the husband comes home, asks his wife, “Hi, honey, how’s your day been?” in a cheerful tone, only to get the response, with gritted teeth, “Everything is FINE! There is nothing WRONG!” The sarcasm just dripping out of her mouth!

Whatever caused her frustration, expressing it in this hurtful, sarcastic way is not the way to open the door to constructive communication to discover, analyze, and resolve the real or perceived problem.

All too often, though, the frustration that PKD patients experience is not due to a specific problem. It might be just living.

Yes. The process of living with PKD is itself a problem! Physical symptoms, emotional isolation, financial issues, dealing with the medical system are what makes up the life of a PKD patient!

How can you, the PKD patient, express all this frustration in a constructive manner, before you fall into the trap of anger, depression, sadness, or confusion?

I remember practically crying to a nurse once, “I wish I could put down this burden even for a couple of days. I would take it up again, but for a couple of days, I wish I could be free.”

Obviously, that can’t be done for most people. For me, my transplant did remove that burden.

What kept me going? Corny as it sounds, faith!

Without going into my personal religious beliefs too deeply, I did, and do believe that suffering has a purpose, and as I expressed to some dialysis center mates, Eventually…we will all be healed!”

So, on the highest level, you literally take life one day at a time. As long as there is life there is hope. And as I have mentioned too many times, this is 2010. There is reason for hope.

I’ll discuss practical methods of express frustration and letting off steam next time.

In the meantime, develop the perspective that sees humor in the “drama” of life. If you look for it, you will find it. And when you do, laugh! It helps!

Perhaps I may just share some of your burden!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming