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
Hmm, sounds interesting. Making fears less vague to help reduce anxiety. It does feel like I’m the only one dealing with things like this, although I’m sure I’m not. Feel free to use any of this if you want.
I don’t have insurance. That’s what keeps me up at night most. Because of that, I can’t really address most of these:
Is my recent increased nausea and decreased appetite related to my PKD?
What about my fingernails? I have ridges deep as the Grand Canyon.
My blood pressure is unchecked, because I can’t afford the meds I was taking. It was hard to control in the first place. How badly has that affected my kidney function in the 2 years it’s been untreated?
I have chronic headaches. How many of those are related to my PKD, directly or indirectly?
Most importantly, how much of my current mental health status is related to this perceived helplessness regarding PKD?
Hi, Lisa!
Yes. These are the things that keep you up at night.
Not being a doctor, I comment an YOUR physical symptoms.
All I can say is, in MY experience, the nausea and fingernail problems were symptoms I did experience. The nausea went away with dialysis. I didn’t notice my fingernails getting stronger until about 4-5 months after my transplant.
I am still on BP medication. (Procardia XL to be precise.)
I never had headaches at any time in my life.
But, as you understand, this is ONE person’s experience.
Obviously Lisa, the “assignment” for you is to figure some way to get some kind of health care coverage.
I’m curious as to what you have done to investigate possible ways of obtaining some sort of coverage.
I’m sure your story will be of interest to others in similar situations.
Lisa, be assured of my constant good wishes for you.
Peace and Blessings!
Coach Richie Perl
I’ve been trying to find some sort of coverage for nearly two years, actually. There is a program here in Colorado, but you have to have a hard rejection from another insurer, and they won’t give that – they’re all so desperate for customers.
Basically, I’ve hit a point where I’m pretty much giving up; at least, with the kidney thing. I’m working with the other unrelated (or indirectly related) issues so that maybe I can find myself in a position where I can take care of things once again.
So I guess it’s giving up but not totally.
@ Lisa
I went 2 full years with on insurance,my nef keep me in B.P.meds with samples that he had in his office pluse he reduced fees till I got coverage,try talking to your doc and tell himor her the whole story they ma help you out.
Good luck and God Bless
Steve
scared and afraid since diagnosed 3 years ago no meds no insurance tried disability no luck headaches kil me
Tameisha,
Do you know a doctor who could refer you to a renal social worker for further assistance?
Peace and Blessings!
Coach Richie Perl