Welcome To My Home Page

Hi, My name is Lori and I am from Ohio. The rainbow border that you see to the Left, is one that I created from a picture That I took with my digital camera. you will find my links will Be to other web sites on PKD. But I Will have some of my favorite web pages too.
Polycystic Kidney Disease What is PKD? This information came from The National Kidney Foundation.
Polycystic Kidney Disease is the most Common genetic, life threatening disease Affecting 600,000 Americans and an estimated 12.5 Million people worldwide-regardless of sex, age Or ethnic orgin. In fact, PKD affects more people Than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome and sickle cell anemia- combined.

My Life Story, Living with PKD

When I was 16 I was told that I had PKD. I thought it was the end of the world-- I was scared and not sure what to expect. My Father also had PKD, so I had to watch him As his PKD progressed. Being at such a young Age I did not want to experience what my dad was. The more I learned about PKD, the less scared I became. I had learned that I could live a A normal life with just minor adjustments. After all I did have two healthy boys.
When I was in my middle 20's the pain started Getting a lot worse and as the kidney cyst grew Larger. After going to the doctor's and always hearing the same thing over and over, People with PKD Do not have pain. Well I was here to tell them that I suffered pain. So I searched for a new doctor. Finally I found one that listened to how I was feeling.
After having Cat Scans, and blood work performed They determined that I had some very large cyst On my left kidney that was probably causing my pain. So the doctor subjected that I have the cyst drained. My question was "how do they drain the cysts?" He explained that they use an Ultrasound machine So that they can see the cysts, and then insert a Needle into your side till they reach the cyst. Then they drain off the fluid. I thought WOW that has to hurt.
The procedure was scheduled and I had it Done within a couple of weeks. While they were Draining the cyst I started to bleed, which they say Sometimes happens. So I was put bed rest in the hospital For 4 hours. When they were sure that I wasn't bleeding Anymore they released me to go home. I had some relief But within 2 weeks I was hurting just as bad as before.
Back to the doctor I go and explain to him that I Am still hurting very bad. So now the doctor subjects That I go see an Urologist and schedule a procedure Called "open marcipulation". Again I ask what is that? They explained that an incision would be made down my Side. They would then go in and make slits in the cyst And turn them out so they would not fill up with fluid anymore. I thought great! Then I would be pain free.
The surgery was scheduled for November 1995. Surgery went well and they were able to invert the Cyst causing my pain. After spending 4 days in hospital I was released to go home. When I went back for my Check-up I was informed that my kidney was infected, And needed to be removed. Now I was very upset and I told the doctor's that I did not want to have another Surgery. At this point I had not even recovered from one And they were talking about another surgery. I continued putting off the surgery even though I was Very sick and on 1500 milligrams of antibiotics everyday. After much consideration and talking with surgeons, They talked me into having the surgery. I was told That if I did not have the surgery I would die from the Infection. Now I was really scared, with having two boys At home who needed me, so surgery was scheduled for October 17, 1996. Surgery went well and I felt great Afterwards.
It has been 5 years since my surgery and My right Kidney is enlarging from doing all the work. The pain is getting really bad from the huge kidney Pressing on other organs. I am under a close watch of My Nephologist every month to be sure the kidney is Still functioning properly.
As each day passes I can feel that my kidney functioning is getting worse. The nausea is getting worse but I still hang on to the fact that I can come out of this failure With God walking beside each and everyday all things are possible
I live each day to it's fullest. I am constantly learning all that I can about PKD. I have made many friends who Who suffer with PKD? Together we support each other, And we are there to listen to them when they are having A bad day. Friends make the world go around.
PKD affects everyone differently but at Some point most all reach renal failure and Require some type of dialysis and/or transplant.
It is now November of 2004 and I am still feeling pretty good or so I thought. I went to see the nephrologist for a visit. Boy did I get a rude awaking when he told me that my kidney function is only at 18%. So now he is talking so fast that my head is spinning. Telling me I need to go see a surgeon and have a cath put in to do dialysis. Also he said that I need to go talk to Kidney Services Of West Central Ohio to begin the tesing for transplant. Well let me tell you I think I was in shock while I was there, I acted like nothing was wrong. When I hit my car and the then started driving on the highway it hit me like a ton of bricks. It was just everything the doctor had said took that long for it to sink in. Let me tell you it was a real smack in the face.
So now I am in denial and keep thinking that he was wrong. I don't feel sick, I feel fine. So how can what he is telling be true? The feelings of being mad and crying and scared are all normal feelings that each person goes through who is faced with something like this. We ask ourselves--why me? Often we think that going into kidney failure is one of the things in the world. Wondering how we are going to deal with thought of having to do dialysis to stay alive. Is this how I want to live the rest of my life? Well I can tell you I am totally upset with the whole thing. I know that I need to except it and then take one day at a time, knowing that I have options available to me.
It is now April of 2005 and I have been on dialysis for about 6 weeks now. Things are going great, even though I did not think this is the life style that I wanted to live. I have now come to terms with doing dialysis and I feel so much better now. The fear of the unknown is so much harder than reality. The biggest decision I had to make was that I had two options, "I can live my life with PKD or I could chose not to live at all." Since I accepted the fact that I was in kidney failure and needed dialysis, things have gotten so much easier for me.
I am doing peritoneal dialysis at home using a cycler machine that I hook up to at night. I am currently working on getting all the transplant testings finished so that I may go on the list. But if it is not in God's plan for me to have a transplant, I know that I can live a normal life doing Peritoneal Dialysis.
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