a polycystic kidney on the left regular kidney on the right

My kidneys literally are the size of a football each of them.. Pushing on my other organs etc.The only place is has to go is down towards my belly.

What is PKD?

Millions of people suffer from various forms of chronic disease or illness.. My disease is called Polycystic Kidney Disease, a.k.a. PKD. I have the autosomal dominant form of PKD - also known as ADPKD, which means that there is a family history (genetic) of PKD in my family and the disease was passed down to me by a parent (in my case, my maternal side of the family has ADPKD.) I also have cysts in my liver (polycystic liver disease).

One in five hundred people has ADPKD, and it does not skip a generation. Parents with ADPKD have a 50% chance of passing the disease on to their children.

PKD varies from patient to patient . It’s a very elusive disease and very hard to treat. Many people never fully experience its symptoms and can live normal lives, never even knowing they have it.

I am one of the more extreme cases of PKD, where the symptoms progress rapidly and at a young age. There are hundreds of thousands of people with PKD - over 500,000 in the U.S. alone, all carrying a disease that causes severe, chronic kidney pain and other related symptoms due to the constant compensation a person’s body has to make in order to accommodate the enlarged kidney’s they live with.

Possible PKD/PLD Symptoms

Kidney Transplant Not the end of issues

After five years of hemo-dialysis, I received a life saving kidney transplant. I cannot thank the donor or their family enough, they literally saved my life. This wasn’t end of problems or dealing with this disease.. The cysts are also in my liver (but aren’t killing me thus far nor so far am I in need of a liver resection.

a polycystic liver

Is Don FAT ?? Or living in an Insensitive World..

I work out, I also try to eat as healthy as I can (but like everyone else I don’t always do it). After almost five years of dialysis.

I had to change my diet and work out just to be here right now so anyone thinking I don’t know how to diet, needs to think again. I hear from a lot of people “Oh you need to loose some weight”. Someone actually took a caliper to me to measure body fat and doesn’t get that something like this is going on inside me (see picture below).

This scan is not me, but the reality of this is it could be me. I manage my PKD/PLD quite well.. If you saw me out on the street you probably wouldn’t see inside me to know something like this was going on Plus the fact that they added the the transplanted extra kidney to my groin area. Removing the PKD kidneys during a transplant often causes death.

Having a Normal Life

Sometimes I find it really difficult to have a normal life. When I walk into a work place people think that I am fat.. There is a bias in a lot of people’s mind against “fat” people that they are lazy etc. This is not who I am..

Being social: I am a single gay man. Finding someone who is attracted to me and really likes me and actually cares has been difficult for me since this disease has come into my life.

I get called “fat” a lot. One of my best friends in the world, tells me I need to lose weight all of the time..When my reality if he saw my scans is much different than what he understands.

I get asked why I don’t like bigger men than myself. Honestly I am very personality attracted, but I also believe in leading a healthy life (which I do) and finding someone who will work out and stay as fit as I can is important to me too. Just like anyone else. It hasn’t stopped me from getting slammed for my own appearance though.

My appearance varies depending on cyst size and fluid issues. I am not interested in anyone who isn’t dieting and exercising at my own level. At 43 seeing someone not trying is pretty bad too. I know they will have more problems later.

People are cruel about this kind of thing on a regular basis.. I keep pressing on hoping I will find a “fit” gay man that I am attracted to that likes me not just for what I look like on the outside..

I also want to work with folks who get my maintenance issues and doesn’t discriminate. I had this with Microsoft during my time with them before my transplant. After my transplant (and I was having rejection issues), in Feb 2010, I had an experience with a manager type who didn’t get me or like me for more than one reason, one my appearance (a month later I found out that I was having kidney rejection and spent a month on thymoglobulin) and my diversity. I was denied opportunity because of it and they ended an engagement early.

Anyway, that’s my story, I am very thankful to be here and have another chance at life. I wish people in business and gay men in particular would quit being so shallow.

Obese America

.Will it happen will people stop being shallow ? not with overweight obese America being what it is.

Thanks to the teaching with data blog for these statistics