Many of us have seen “newbies” on the various Social Media venues sharing their stories of being diagnosed with Polycystic Kidney Disease, telling of the shock and fear they experienced, also sharing the experiences of family members who have the disease, relating how awful the disease for them.
And we read these these accounts, we nod our heads in sad agreement. To a large extent, we all have a similar story to share.
And yes. There is shock, and fear, and sadness. Rightly so. A diagnosis of PKD is not a trivial event.
Now, as you have no doubt read, it’s not so much what happens to you that matters, as how you respond to what happens to you.
If you inherited the disease, the framework of how you respond to your PKD is largely determined by the experiences and responses of your parents.
If they experienced reasonably good outcomes, and were consistently optimistic, there’s a good chance you will respond in an optimistic way.
If, on the other hand, you witnessed real hardship, you will tend to tell yourself a story about your disease that may be on the pessimistic side.
Knowing that we humans have the capability of “talking ourselves” into almost anything, telling yourself a fearful, pessimistic story will only serve to strengthen negative, disempowering beliefs about the kind of life you will live with PKD.
The good news is that you have the power to develop a story of hope, optimism, and courage, picturing positive outcomes for your life.
Seek out people with PKD who have positive “stories” to tell. People who have found the “positive attitude” to successfully cope with their limitations.
The stories we tell ourselves are actually that — stories. They are not totally based on facts. We can’t predict the future.
But, through your story, you can direct affect your attitude concerning your disease. An optimistic story leads to an optimistic attitude.
It doesn’t cost anything to tell yourself a positive story.
So why not sit down and write a story of how you will cope and adapt to the ups and downs of your PKD Odyssey.
And keep “talking yourself” into optimism and hope!
After all, it can’t hurt!
So, what’s YOUR story?
Peace and Blessings!
Coach Richie Perl
Certified Professional Coach
Certified Trainer of Neuro-Linguistic Programming
My father was diagnosed with PKD when I was in my 20′s. His doctor advised that all of his children should be screened. Talk about bad odds..8 of his 9 kids were/are positive.
Fast forward 30 years. I’m 52 now. I’ve lost two sisters, and one niece. My oldest sister died in 1990 at age 40 from complications after her transplant. One of my younger sisters died in 2008 from lupus. PKD was listed as a “contributing factor” on her death certificate. My niece died from a brain aneurysm in 2007 at age 36. Brain aneurysms are a side effect of PKD, which she had.
A further note: In 2008 another sister damned near died from an aneurysm. She was in surgery having a small aneurysm coiled when another large one let go. The only thing that saved her life is that the surgeon realized what had happened and took immediate action to relieve the pressure on her brain. The only reminder my sister has is a minor lingering weakness in her left arm. This sister started dialysis last month (August 2010). She does peritoneal dialysis at home.
I started dialysis a year ago, in August 2009. I do the nocturnal hemodialysis at a clinic so I can continue to work full time. I was offered the peritoneal but declined it because I don’t want to deal with an exposed catheter in my abdomen. I love my pool too much for that!
As you can see PKD has had quite an effect on my family. There are reasons that I’ve survived and not had problems. I started watching my diet 30 years ago when I was first diagnosed. I’ve also been very good about taking my blood pressure medications and getting regular checkups. As a result, I’ve avoided the side effects (like aneurysms) and I’m a very good candidate for a transplant (according to my nephrologist).
I’ve started the procedure to get on the transplant list. Here in Florida it’s about a 2 year wait for blood type O, and the average survival for a kidney transplant patient from Tampa General Hospital is 15 years right now. If transplant medicine continues to improve at the rate it is, I full expect to survive at least another 20 years once I receive my transplant. That would put me into my 70′s. Average life expectancy in the US right now for men is 75. Works for me!
My advice to anyone that’s recently received a PKD diagnosis? Keep your blood pressure under control. Listen to your nephrologist! Follow your diet. Listen to your nephrologist (can’t emphasize that one enough)! If you’re not in good physical shape, now’s the time to start working on it. You don’t have to have six pack abs and a sculpted body, but you also can’t afford to be carrying 30 extra pounds. Maximum BMI for transplant is 35, so keep that number in mind as you progress. Remember that you have to maintain as healthy a body as you can. When it comes time for a transplant is not the time to find those clogged arteries from high cholesterol, or the poor lung function from years of smoking.
Most of all, keep a good attitude! PKD isn’t a death sentence anymore, and there’s a lot worse things you could be diagnosed with. I’ve watched friends go through chemotherapy for cancer, seen other friends die when the chemo didn’t help, watched my wife’s dad go through Alzheimer’s and her mom deal with dementia and congestive heart failure. Given the choice I’ll take the PKD over any one of those.
Hope my story helps someone else!
Bert
Hi, Bert!
An amazing story of what PKD can do to a family, and the hope that can be generated by a combination of education, action , and hope.
Obviously, I acknowledge the grief and sadness youi experience when thinking about those family members who were lost to PKD.
I also want to acknowledge and celebrate your positive attitude, positive actions, and the fact that you are sharing this story.
I so concur with your approach!
I wish more PKD patients would be as pro-active as you are!
Hope you get the “call” as soon as possible!
Peace and Blessings!
Coach Richie
Hi all
My mother just diagnosed with PKD, She is 49 years old, right now her Sr. Creatinine level is 4.7 mg/dl . Strange thing is that we have no family history of this disease, still she is suffering from the same.
Already we have started taking medicines suggested by our nephrologist. But friends we need your suggestions/helps regarding the lifestyle, medicine, diet & the treatment which can help her in any ways.
We would really thankful for you help!!
Regards
Sushant
Hi, Sushant!
Yes. The creatinine is high.
At this point, getting informed as to the available treatment options is the highest priority.
Diet is also extremely important, as this is one of the few things a patient can control.
As for lifestyle, allow your mother to live as much as possible as she has always lived. Her body will tell her when she will be unable to do what she normally has done.
Search the web for dietary information for PKD. Keep monitoring the blood pressure. Hopefully, the nephrologist will monitor the other important indicators.
Be on the watch that her friends don’t abandon her. This illness is not contagious!
If she is able to use the internet, there are message boards and on-line “communities” for people with PKD.
Here’s one that I like:
http://www.dailystrength.org/c/Polycystic-Kidney-Disease-PKD/support-group
Above all, watch that your mother doesn’t get depressed.
An optimistic attitude is the best way to approach any illness!
Good luck to you and your mother!
Peace and Blessings!
Coach Richie Perl
Hi my name is Melissa. I was diagnosed with Autosomal Recessive Polycystic Kidney Disease while in my mothers womb. It is a very rare type of PKD. The doctors told my mom that I wouldn’t make it past 5 years. While I am 20 years old and I am doing great. My kidneys will eventually fail but as of right now I am enjoying life. I went to college have a good job and have an amazing fiance.
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
Melissa,
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