At first glance, you may wonder how the mind is connected to Polycystic Kidney Disease.

From a physical point of view, I don’t think a direct connection can be made. I’ve never heard of anybody thinking his/her disease away!

However, the mind is involved in how your perceive your disease.

In my last post on “meaning,” we discussed how each of us creates his/her own perception of what PKD means to each of us.

This perception of what having PKD means to us obviously affects every aspect of our lives.

A further aspect of our mind’s involvement in our own perceptions is how we describe that perception. I’m basically talking about the “half-empty, half-full” concept.

The “facts” of our disease, the numbers, BP, GFR, creatinine, BUN, etc, are precisely that: Demonstrable, measurable aspects of our disease.

How we physically feel, though a fact, is not yet measurable. A scale from 1 to 10 is hardly scientific!

Yet, pain, fatigue, nausea, and cramps are what many of us actually experience!

I don’t know about you, but I never “felt” my creatinine count, nor any other “number!”

So what we actually experience is not measurable! Think about that! Can you measure the level of “good” or “bad” you’re feeling at any given time?

I can’t!

Yet our perceptions are based on these subjective experiences!

Have you ever felt rotten, yet when a friend asked how you were, you answered, “Well, could be better,” or some other statement that tended to minimize your feeling rotten, in order to not look bad to your friend?

Sometimes, because the mind tends to justify what it expresses, you actually feel a bit LESS rotten because of your statement!

(I’m not saying this always occurs. In extreme pain, for instance, this usually doesn’t work. However, sometimes your own description of your condition can be a kind of “self-hypnosis,” leading to a slight reduction of the perception of pain! Hypnosis is often used for pain management.)

So, pay attention to how you describe the perceptions you have about your disease. Telling yourself that “PKD is the worst thing ever” will tend to make that perception more intense for you.

Saying that “Having PKD isn’t the best hand that I could have been dealt, but in this day and age, I have a reasonably good chance of playing my cards right and living a fulfilling life,” will go a long way in making that your overriding perception of your disease, and propel you to act in a manner consistent with that perception!

After all, it’s all in your mind!

No. I take that back.

Some of it is still in your kidneys!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

There is a long story which is too lengthy to reproduce here about a family which experienced a series of events. Upon first “take,” each experience appeared to be “negative,” but later on, each so-called “negative” event was a “blessing in disguise.”

Now I’m not saying that being a PKD patient is a desirable state of affairs! Far from it!!! It’s not desirable at all!

As human beings, we have the capability of ascribing “meaning” and “significance” to the events in our lives.

For instance, have you ever experienced a romantic break-up? Never a pleasant experience. But what did the break-up mean to you? That your were a worthless person who would never experience love again? Or, after the emotional pain subsided, that you realized that you were at least worthy enough for that romance to have happened in the first place, and that if it happened before, it can happen again!

Same event, different meanings or “interpretations.”

What does having PKD mean to you? I suspect the meaning it has for you changes over time as you deal with the disease and your experience grows.

It may be that you interpreted the fact that you have PKD that you are “defective.”  You may have told yourself that you will never get married and have children. You may have thought that having PKD means that you will live a very limited life.

Or, after a period of time after which you have “absorbed” the fact that you have PKD. you may have perceived it as a life challenge to overcome and developed a high degree of motivation to do what is reasonably within your power to obtain and maintain the highest quality of life possible for you at any given stage.

Please understand that I’m talking about a “high-level” interpretation of what your PKD means to you.

There are days and there are days.

What I’m saying is that having a “high-level” meaning that having PKD is a life challenge that can lead to a very high degree of fulfillment will go a long way in helping “pull” you through the “rough patches.”

The interesting thing about determining “meaning” or “interpretation” is that it costs nothing to choose the “meaning” that will lead to the best life-style for you.

Yes. It takes some work.

But, doesn’t everything?

( I wonder what I meant by that?   )

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Whatever stage of PKD you may be in, that stage brings along its own set of concerns.

If you’re pre-dialysis, you have concerns about dialysis, and dealing with physical symptoms, and possible financial and relationship issues.

If you’re on dialysis you have concerns about maintaining a high quality of life within the constraints of whatever mode of dialysis you’re on.

You may be concerned about the possibility of transplantation. Can a donor be found? Will the transplant be successful? How long will the transplant last?

And, for any stage, employment, insurance, and general lifestyle concerns.

I would suspect, that by-and-large, these are the areas that keep PKD patients up at night.

And rightfully so! After all, we’re talking about a potentially fatal disease if not dealt with!

Yes. Jobs have been lost. Relationships have ended. Finances have taken a beating. Deaths have occurred. Let’s not kid ourselves. PKD is serious business.

Yet, many PKD patients have done well through all stages.  True, “well” is a relative term. Personally, I worked full-time from pre-dialysis through post-transplant. Yes. I had (and still have(!)) a very good health insurance plan.

But how many patients didn’t follow their dialysis diet protocol and suffered because they didn’t? How many patients didn’t take their meds correctly and suffered? How many patients didn’t quite understand their doctors’ directives and failed to ask for clarification and suffered?

Perhaps equally as important, how many patients feel un-understood because they weren’t able to communicate how PKD was affecting them to the people who were close to them.

What about younger people who worry if they will get married and have children?

I know. I’ve been there! And quite frankly, I’m glad I’m no longer there!

Look. It’s 2010. Information about PKD is all over the web. Most of it is OK. Some very good, and some not so good. The Social Media sites are very helpful, but up to a point.

Yet even with these sources of information, I still connect with patients who say they aren’t understood by their families. I still connect with patients who say they are scared. Being in a state of “disconnect” or a state of fear is not helpful!

What to do?

The first step to ease your concerns and fears is to…

Write down precisely what you are afraid of!

Examples:

“I’m afraid that my life will be very limited, and that I will dependent on a machine for life.”

“I’m afraid that no one will want to marry me.”

“I’m afraid that I won’t be able to remain employed.”

Whatever they are, write them all down.

This exercise will transform any vague feelings of fear to concrete statements that will allow you to act upon them and eventually calm your fears and address your concerns.

So what keeps YOU up at night? Please let me know! A small shift in your daily routine may be enough or a quick answer or a link to a website may make a big difference to you!

Please post your comments below or e-mail me at

info@innergameofpkd.com because,

hey, you never know!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

OK.

So I took the last eight posts to describe the major part of my PKD Odyssey.

Perhaps, as was my intention, that it helped to “humanize” the process. It’s one thing to hear someone telling you about hemodialysis, it’s another to listen to someone describing the process.

But above and beyond that, I learned a number of concepts, practices, and, what I like to call “mind games” that I used to cope with the…challenges…that I faced.

1. I learned to stay in the present, as best I can. I learned NOT to project what may or may not happen in the future. I can’t control the future. All I can do is make the best choice NOW based on the best available information that I have NOW.

2. I learned to look at my situation from the higher elevation. The world is bigger than me. Polycystic Kidney Disease may be unique to me, but it is not unique to the medical professionals. They know what they’re doing, provided you co-operate, and respectfully ask for THEIR co-operation! Also, if I had a bad day, pain, cramps, nausea, I realized that this one day is not the totality of my life.

3. I learned to “turn off” my emotions when I had to experience something that was a bit undesirable, like, for instance, injecting myself with “epo” to control anemia. I basically became like a robot, and, shutting off the negative, protesting “voices in my head,” I proceeded, mechanically, robotically, to do what I had to do.

4. I learned the judicious use of the facility of “comparing.” I DID compare myself to those who I considered worse off than I was, and offered a silent blessing to them, and a silent word of gratitude that I was where I was. I DID NOT compare myself to those who ate and drank normally. My thoughts were,”Well, this is where I am right now. Envy for healthy people doesn’t do me any good, while full acceptance does.” I also figured that I was someone else’s “negative comparison!”

5. After my transplant, I certainly went through a stage of great appreciation for the human and technological advance that made my transplant, (and by extension, all “medical miracles.”)

6. I developed a great compassion for people whose health is less than optimum. As a result, I use my training as a Life Coach and a Neuro-Linguistic Programmer to assist PKD patients through their Odysseys.

If you feel that some aspects of your PKD Odyssey is somewhat more challenging than you would like it to be, I invite you to visit “My Coaching Services” page at

http://innergameofpkd.com/my-coaching-services/

and contact me at:

info@innergameofpkd.com

to set up a complimentary “PKD Odyssey Strategy” session. My training and experience may lighten your burden as you travel down your own “PKD Odyssey!”

May your Odyssey be an easy one!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro_linguistic Programming

Onward!

The days at the hospital moved by, with everything being measured.

I started walking dragging the IV pole with me. And, one day, I was walking in the hall, and there, as I paraded in my fashionable hospital gown, I was “observed” by my wife’s boss!

As you probably know, dignity doesn’t exist in a hospital! Fortunately, I’ve been a hospital patient and wasn’t too embarrassed!

Finally, the day was determined when I was to leave. My donor wife went home after five days.

Well, there was a slight problem in being able to leave.

My body was so swollen that I couldn’t fit in my own clothes!

So, my Mom had to get a set of XXL sweat clothes to be able to go home!

(I was NOT warned about this!)

In any case, I finally got home after nine days, with the great ability to urinate!

So, between my wife and myself, we were two people recovering from surgery!

Fortunately, my Mom and sister (who, nine years later received a kidney from her husband!) helped out.

The next phase was to go to the clinic at Rogosin three times a week for monitoring. Organ rejection risk is highest in the first weeks after the transplant.

So, even though I was overjoyed and grateful for the transplant, I still was experiencing the apprehension that something might go wrong.

In other words, what I’m saying, even having transplant surgery, a kidney disease patient is not out of the woods.

And technically speaking, a transplant recipient is never out of the woods!

The kidney is always being rejected! But the immunosuppressant drugs stop the rejection process from succeeding!

But, after a month of going to the clinic, I was discharged back to the care of my own nephrologist, and normal life increased, until, three months after surgery, My wife and went back to work.

So, that’s the main part of one PKD patient’s struggle.

Clearly, the outcome has been more than fantastic!

Gratitude for all those directly and indirectly involved will always be expressed!

I also want to be clear that my Odyssey didn’t end there! Quite a bit more occurred over the years since the transplant!

But that will be for another time!

In any case, I hope that the sharing of my Odyssey has “humanized” some of the phases of PKD that you have heard and read about.

And once again, I would love to hear from you, comments, questions.

Please leave your comments below or e-mail me at:

info@innergameofpkd.com and let’s have a lively conversation!

Thank you for your indulgence in allowing me to tell my story!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

The Odyssey continues…

On the morning of Jan. 5, 1998, my wife and I report to New York Hospital. Everything was cool, right? Pre-ops done, they were all set for us, right?

Wrong!

At the last minute, there seemed to be a glitch in my insurance coverage. The women at the hospital in charge of that were on the phone, working furiously on my behalf. There was even one of the administrative doctors who was with us who seemed more frustrated than we were!

(Actually, I have to say it was kind of devilishly satisfying to see a doctor who had to wait along with us!)

After about 45 minutes, everything was straightened out, and we were admitted.

Yaay!

As it happened, a friend of my wife’s sister happened to work in the Transplant department. She, of course, knew the doctors involved in our two surgeries. And let me tell you, her kindness and light-heartedness eased the stress for both of us.

And so my wife and I went our separate ways. The next day was surgery day for both of us.

The next morning, I was prepped, and got medication to “get mellow.”

Just before anesthesia, I saw my wife, and, thanks to my wife’s sister’s friend, we were both in great spirits, with light-hearted banter passed among the staff.

So, in a room filled with amazing equipment and a lot of nurses and technicians, I went to…???

The next thing I knew, I had an oxygen mask on my face, and voice from the distance said, “The transplant is great! You’re making urine all over the place!”

Wow!. In my semi-conscious state, I felt a sense of gratitude that not too many people get to experience!

Because of the previous experience with asthma, they brought in a portable X-ray machine for a quick chest X-ray. Later, I heard that everything was fine.

My wife said she saw me in those moments, but I didn’t see her.

I don’t have much recollection of those hours.

I do remember my room, and the usual IV attachments…which beeped annoyingly!

I got used to it.

And monitoring and recovery began.

I knew I was on a high dose of prednisone, and I had morphine.

Of course I couldn’t eat or drink until my digestive system “woke up.” That would take a while.

Using wet “sponge sticks” to moisten my mouth, I lay there. I was pretty stoned for the first 36 hours.

I won’t get too graphic, but they measured everything that went into me and that came out of me for the nine days I was in the hospital.

But the kidney was working, I was learning what meds I was getting and what they were for. The nurses pounded that info into me every time I took the meds. They wanted to make darned sure that I knew what I was doing. I learned quickly.

So far, so good!

BTW, if you have any questions about anything concerning these “struggles,” please let me know. The point of me writing this is to remove some of the “mystery” of the “PKD Odyssey.”

Please leave your comment below, or e-mail me directly at:

info@innergameofpkd.com .

My next and last installment might be humorous to some! An unintended result!

Carry On!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Let’s backtrack a bit.

As my fistula was developing, and before I started hemodialysis, my nephrologist “suggested” (read: ordered!) my wife and I to make an appointment with a transplant co-ordinator at The Rogosin Institute, here in New York City.

I’m sure you have had blood drawn for testing. Should you get to go to a transplant center, (and for those who need one, please go as soon as possible!) be prepared to have about dozen vials of your blood drawn! It’s amazing to see a rack of test tubes with your own blood in them!

And, since my wife was there, the nurse asked her if she wanted to be tested to see if she could be a donor. My wife, with a shrug said, “Sure!”

And a dozen vials of her blood were drawn.

After a little class given by the transplant co-ordinator to the few of us who were there, we left. They said they would get back to us. So what else is new!

All I knew was that I was registered with in Rogosin’s transplant program. Note that I was not yet on a list.

About a month later my wife gets a call from Rogosin that her blood type and antigens were a good (not  perfect) match and could potentially be a kidney donor for me!

This was unexpectedly good news! By this time, I has already started hemodialysis, so I wasn’t expecting any “quick fix.”  Nevertheless, the Odyssey continued.

Over the next three months my wife underwent a lot of tests! And I do mean a lot!

X-rays. 24-hr urine wearing a blood pressure monitor, and, an angiogram!

Finally, around Thanksgiving of 1997, she was told that she qualifies as a donor!

Ultimately, surgery was set for Jan. 6, 1998. Imagine how that New Year’s Eve went!

But I still had to get checked!

And Murphy’s Law was involved!

A routine X-ray showed a cloudy spot. I saw it myself. I couldn’t convince the doctors at my local hospital that was a bit a asthma acting up (which it was.) The doctors didn’t want me to go home! They were sure I was dying of pneumonia! (I was fine. Not even a fever!)

Fortunately, my dialysis-center doctor “just happened” to be by the Radiology department. I called him over, and after some hassle, I signed a release form and was allowed to leave!

It took two weeks to resolve this. I finally got another X-ray which showed my lungs perfectly clear!

Further pre-op tests included an MRI (mainly of my head(!) to see that I was in no danger of aneurysms.)

My wife and I were scheduled to check into Rogosin on Jan. 5, 1998.

Stress.

The night before we were to go, we were at each other’s throats!

“Are you sure you want to do this?”

“Yes.”

“Are you sure you’re not going to hold this up to me whenever we have an argument?” (Notice I was the one starting one!)

“What do think I am?”

On and on.

Well, the next morning we went to Rogosin.

But wait…there’s more obstacles!

Stay tuned!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

So.

I have reached the dubious milestone of having failed kidneys.

It’s a rather unique experience knowing that you’re alive because of a machine.

It took me a little while to fully digest this.

The sense of dependence is very strong! Not only on ther machine, but on the technicians, the nurses, and the whole string of people and systems that make hemodialysis possible.

That sense of dependence is quickly joined by a great sense of gratitude!

The specifics:  After having hemo at the hospital for two weeks, I was scheduled to have hemo at the dialysis center on Monday, Wednesday and Friday from 9:00 PM to 1:00 AM. This allowed me to continue to work full-time, get home, eat, digest, and get to the center, about 5 miles away. (I was often called in earlier when there was a chair available. That was nice when they did that.)

Aside from the actual experience of being dialyzed, just observing the other patients at the center was a real education. Most of the people there were there because of diabetes. One man would come in, remove his prosthetic leg, and attempt to “get comfortable” in the chair. Another woman had one leg and was blind. Young and old. Wow.

For those who haven’t experienced hemodialysis, I can tell you that the size of the needles that are put into you seem very, very large! The technicians start off with smaller gage needles, and over a few sessions, you graduate to the maximum, most efficient gage.

I get weighed when I come in. I go to my chair. The technicians get out “my” artificial kidney, they plug in the tubes, plug me in with the needles, set the machine, and I get to watch TV, listen to my Walkman, write a bit (using my left, non-dominant hand!), or just rest. Some patients could sleep. I never could. And I tried to make the time pass.

When there was a lull, sometimes I would talk sports with some of the technicians.

But, typically, the time did not move swiftly.

Finally, after about three hours, the required amount of fluid was removed from my body. (For me, I figured it was about seven pounds per session. Heck of a way to lose weight. At this time, I no longer urinated any meaningful amount.)

The technicians unplugged me and the machine, and I had to wait about five full minutes to stabilize. After losing so much weight so quickly, the heart and blood pressure are very unstable. The technicians and nurses make sure that when I stand up, I don’t pass out. I have heard that it does happen. I took my time before I felt ready to leave.

Lastly, I get weighed before I leave. Then, I drive home, hoping to get a few hours of sleep to face the next morning!

But other things were happening in the meantime!

Stay tuned!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming