I laughed as I read that you thought “HE DOESN’T GET IT!”

Going to work every day with maybe 3 hours of sleep, not able to drink more than a liter of liquid a day,
having painful bone bruises while standing in the subway, pleading to God to “take this cup from me,”…
yeah, I get it alright!

Seriously, Christine, what helped me was seeing people in the dialysis center who had diabetes and
lost limbs, one old woman was blind, several needed wheel chairs, and a few very young folks.

An “attitude of gratitude” is indeed a cliche, but when you look around and appreciate the technological
advances that keep happening, and that along with that, the “human factor” of courage, persistence, and, of course, love,
you get to understand that in spite of the crap, life is still worth living.

But…it’s important to value what is REALLY important.

The friendly conversation. The walk in the park.
And…sharing the ups and downs of life.

That’s what keeps me going!

And I know it keeps you going!

Because if you didn’t give a damn you wouldn’t be going to school!

Keep on truckin’, Christine!

Peace and Blessings to a great College Girl!

Coach Richie Perl

I am SOOO PLEASED that you are back to writing on this blog and that you have thought of me and forwarded your blog to me.
Kudo’s to you for stepping back out there to help others! I for one, appreciate your dedication and hard work.

This blog is perfect for the days that I am feeling “poor me!” Today, through the grace of God, I do not feel that way. I have had many days physically down and out for the last 3 years and even up until this week, but I have FORCED MYSELF through the pain and illness to move forward emotionally even though my physical is not cooperating. I did this with some of your help some time ago. You encouraged me to not give up and to ‘LOOK FOR THE POSSITIVE.’ At first I was annoyed with you, thinking “HE DOESN’T GET IT!” However, I started to practice some of the tools you suggested and thus have gained the courage to step back INTO LIFE. Thank you for all your encouragement and support!!!

No, life is not perfect. Yes, my health really is a pain in the…….! (And then some). There are days I can NOT GET OUT OF BED… but now I make sure I get out of bed the next day and trudge through as best I can. I can tell you this, having gone back to school, walking a little through my neighborhood, and being in the real world again, has helped me to NOT FOCUS on how badly I feel or how fatigued or tired I am. Mentally because of this, I am stronger and have some faith and hope that tomorrow will be a brighter day.

I wish you well and hope you have a wonderful valentines day.
Keep the blog going please!
My best to you always,
Peace and Blessings!
Christine Curti

Interesting project!

Your proposed questions are excellent!

Personally, I can’t answer for the thousands of PKD patients.
Every case is unique, because every patient is unique.

What I do is assist individual patients along what I call the “PKD Odyssey.”

I don’t know why you have chosen PKD for a project, or what your intended purpose is, but for information
about how real patients actually experience their disease, I suggest the following:

1. Develop a questionnaire which initially describes the nature and purpose of your project, and how the information asked for will be used.
2. Assure that the answers to the questions will be confidential.
3. Design the questions in such a way that they will be “gentle.” In other words, keep in mind that living with a disease is not easy,
and many people may be sensitive to questions that may appear to be too “prying.”
4. Consider looking at “Survey Monkey” to put your questionnaire on the Web.
5. Go to Facebook, where there are several Facebook groups dedicated to PKD.
6. Contact the “Manager” of the group and introduce yourself and your intentions.
7. Perhaps the Manager will allow you to post your “Survey Monkey” questionnaire.
8. Politely ask the members of the Facebook to respond!
9. Perhaps you could “reward” the participants of the survey by sending them a report of the results!

Here is one Facebook in which I participate: https://www.facebook.com/groups/PKDCYSTERHOOD/

I believe the Manager of the group is Margee Kjelson, who can be found on Facebook!

I hope this helps!

Good luck!

Peace and Blessings!

Coach Richie Perl

P.S. If I can be of further assistance, please let me know!

We appreciate any response

Congratulations on the success you’ve made of your life!
Clearly you have a lot of life to live!

Besides avoiding salt and taking BP meds, you’ve probably heard that meditation can hepl in lowering blood pressure.

If you haven’t already, you might consider learning how to meditate.

As for the apprehension of the future, I don’t think too many of us are immune to that!

Just keeping living “one day at a time!”

Peace and Blessings!
Coach Richie Perl

I still get worried and still have to take me high blood pressure medication and watch my salt intake. Its still scary as Im not sure when they will go but I am getting a Nephrologist and making the best of it.

I am going to donate my kidneys to research when I go in hopes they find a cure for PKD. I thought I would share my Story hopfully it will inspire others to keep pushing and not give up.

It will be a forever battle for me but I am full of armour and faith <3

Anyone out there live in Cincinnati? I have a nephrologist who messed up my BP meds big time, so I’m looking for a new recommendation.

Also, I have checked with all kidney disease organizations that I could find on the web in Cincy, that has support group meetings. I found it very helpful when I lived on the west coast.

Thanks, Betty

No, you are definitely not a hypochondriac!
I was once accused of that myself!

Also, it must be noted that the meds have their own side effects which can be debilitating.

In effect, every case of PKD is unique.

Thanks for bringing this up to the forefront of our minds.

Peace and Blessings!
Coach Richie Perl

I’m sure everyone with PKD has there own list of problems that are associated. As someone else said this disease can create different problems for each of us. I guess there is very little in our bodies that can’t be affected from this. I thought I was becoming a hypochondriac for a while.

Veins apparently are also affected and cause, easy bruising, difficulty with IV’s, eye blood vessel breakage (looks bad but doesn’t really hurt the eye, and red moles (which are really busted capillaries) to name a few.

The above were all confirmed by one or more of my physicians.

Hope you and all reading this are doing well.

Betty

Sure.

Remember, that male types, like me, never want to show any weakness or vulnerability. The “macho” aspect of guys is very important.
Wives, although perhaps more comfortable with acknowledging “weaknesses,” often forget about this “macho’ aspect that guys have.

What might be helpful, (and, not knowing you personally, I can’t be specific,) would be to approach the subject of PKD in a matter-of-fact manner.

In other words, approach the topic of PKD so as not to “awfulize” it. That is, treating the subject of PKD as some horrible, almost taboo subject.

For instance, something like, “You know, hun, I noticed that there are a bunch a PKD pages on Facebook with a lot of nice people on it. I think I’ll take a look and see what it’s all about.”

As the subject of PKD becomes more common and almost casual, there will less need for him to “push away” the subject..

Again, not knowing the specific circumstances, this is the approach that might be helpful.

Thanks for asking!

Peace and Blessings!
Coach Richie Perl