what makes you scared is dealing with this by yourself. without knowing what scares you we can't help. you may find sharing your concerns will ease your mind a lot, especially when you learn how others have coped.

Hello dmtexas,

Welcome to the group. We look forward to hearing more from you and discussing your concerns. Talking really can help you to deal with your fears so tell us about yourself and your situation. This group wouldn't be here if we didn't think that sharing our experiences helps.

Chewitt

Hello dmtexas!

I'm a 43 year old male and I was diagnosed six years ago.

Scared. Man, do I remember that feeling. I'm no girly man, in fact I look more like a fireman or football player. But when I found out I have PKD I don't think I ever cried so much in my life. I was down right terrified.

It sucks, but it also hasn't been that bad. If it still bothering you that much there are a few things you should consider.

Your mental health plays a significant factor in not only your well being, but also your relationships and your friend's and family's well being. A negative attitude contributes, if not causes, a downward spiral leading to weight gain, lack of exercise, depression... I could go on and on, but you get the point. One thing my doctor told me that really stuck with me is, "You can't quit exercising just because you don't feel well."

Depression is serious business for us with PKD and other chronic diseases. Nobody likes to talk about it, which doesn't help. But, far more people suffer from it than you can imagine. Those who just tell you to "cheer up" don't have a clue. People understand that diseases like diabetes is basically an imbalance of hormones and chemicals that needs to be treated. Meanwhile, depression is often no different. It just isn't as easy to figure out what is wrong or how to treat it. Having kidneys that are out of whack doesn't help.

I think you've made a great first step by getting on this forum. Go ahead, vent, scream, cry, or do whatever helps. This forum is hands down the best thing like it on the Internet. I only wish I could be more active on it.

Consider joining a support group. In addition to checking with your doctor many of the local chapters of the PKD Foundation have support groups, take a look here: http://www.pkdcure.org/connect/chapter-locations

I attended one meeting and it changed my life. One of the other members simply referred me to another doctor. I made an appointment the next day. Going to him made an incredible difference for me.

It's ok to be scared, it means your normal. Just don't let it keep you from living your life.

Sharing helps! See my previous topic on lower eGFR. Getting real answers from real people dealing with this disease really was comforting. At least it was for me. And even if you are skeptical - giving it a try will not hurt you.

I think that all of us with PKD are or at least have been scared.

Hi guys,
first of all i want to excuse me for my english. I'm italian and it's not my mother language.

I wanna really thank to all of you who answered to this topic. Expecially to slickrock. I had chills reading your words.

This is the first time that i talk to people like me in this world. My kidneys still works. Today my only simptom is that i often i feel like my abdomen is exploding.
I can accept this. But i'm starting to feel the disease. I'm feeling something is growing inside me. Expecially on my liver side.


One month ago i had my first anxiety crisis, while i was driving. I started to feel like a was dying, i stopped the car and i couldn't move arms and legs, my colleague called 911.
Also in next weeks after that event i had other crisis. Now that i understood that was anxiety i feel weel and i don't have crisis anymore.

I would like just to go to an organ shop and buy a new liver and two new kidney. Why can't we do this??

I just desire to have a normal life. I want want to get married,
have kids. Be happy. Normal life. Will i reach this dreams?

It would help to hear from happy things that happened to your life, after the diagnosis.


Thank you again

Hi all,
how are you today? i'm sorry if i wrote something wrong.

I was hoping in your responses. Maybe it's bettere if i introduce myself before to ask for your help.

I'm nearly 30 and i'm from italy, i was diagnosed two years ago. My only simptom now is that i feel often like my abdomen is "stretched".. i don't know how to explain it but... I started eating less.. because this make me feel better (but this scare me).

My kidney works. Now i'm only taking blood pressure meds and potassium citrate.

I thing i'm getting depressed, i can't stop thinking about pkd, excecially in the last month, because this abdomen feeling don't go away.

Do you have similar feelings?

I don't have back pain, i have it only if i do some hard work. Otherwise i don't have it. I usually do office work.

Thank you

you may not have gotten responses because you posted in an existing post instead of starting your own.
it is normal to be afraid of the unknown but remember, PKD is not a death sentence. there are many ways to keep symptoms from getting out of control, diet, exercise, plenty of water.
please start a thread of your own. under the heading is a place where you can start a discussion