Okay let's see...where to start....I guess the beginning...

Almost six months ago I headed north to my parents place in Kentucky, and had to leave my husband Michael behind here in Texas where we live. Why you may ask...well...I had been to countless doctors here in south Texas, and unfortunately I could find no doctors willing to treat me. I kept getting told I was far too complicated.

By this time I was extremely ill, and suffering from severe pain that I could barely handle even while on very strong pain killers. My everyday family doctor had some test ran on me, and after looking at some films made of my one and only kidney, he thought I had a kidney blockage and that was what was causing most of my problems and putting my life in danger. He told me I needed to get to a kidney specialist quickly. Unfortunately the only place I knew to go was back to the University of Kentucky's urology clinic where I had been treated before years ago.

Michael sent me to my parents in western Kentucky about 5 hours from the University. When I got to my parents it was great to see them since this January would have been 2 years since I had seen them. I got an apointment with the head Urologist at the university.

It was discovered that I had two hernia's. One of them was causing my kidney not to empty properly. One evening I got even sicker and my Mom rushed me to the University making the 5 hour drive in less than 4 hours. I was admitted to the hospital and the very next day I was taken in for exploritory surgery as it was believed that my kidney blockage had gotten far worse.

Well to the doctor's suprise I didn't have the type of blockage they thought I had. Originally they thought that the ureter to my right kidney was closing up, but when the doctor took a rather large camera into my urostomy (For those of you that don't know what a urostomy is, it is like a colostomy but is for urine only. A urostomy is made of intestine, the intestine is connected to the ureter, or in my case directly to the kidney, on one end, and then the other end is connected to the abdomin where it drains into a bag that I have to wear at all times.), before the doctor knew it he was in my kidney. He said that the camera should have been far to large to make it through my ureter, which is when they discovered I no longer have a ureter. It seems to have been removed when I had surgery in Portland, OR..without my premission no less.

It seems the blockage I was having trouble with was actually caused by a hernia. Part of the urostomy and my intestines were coming through the hernia. When I woke up in my hospital room I was told that I was going to have to have very major surgery. They ended up scheduling my big surgery for Sept 28th, which by this time was about a month and a half away. Another problem I was having was my real bladder which I hadn't used in 20 years, since I was 10 yra old. My bladder was filling with infection, so they decided when they did the hernia repair they would also remove my bladder.

About two and a half weeks before my big operation, my parents dog Angel who wieghs around 20lbs jumped from the couch onto my abdomin while I was sitting in the reclyner. It hurt like hell. Well I ended up going to bed shortly after. I woke up about four hours later and something didn't feel right I was in extremely bad pain in the center area of my abdomin where I hadn't been hurting the day before. I reached down and felt of my abdomin and yeap something was very wrong..When I looked there was an area that was potruding out by a good 5 inches or so, and it was about 6 inches wide.

I got my Mom and when she saw she packed me up and rushed me to a closer hospital, because we were pretty sure I had a freshly ruptured hernia, and there was a very good chance that what was sticking out so far was intestine that had come thru the new hernia. After a CAT scan it was confirmed that we were right. The doctor didn't think my intestine was twisted, and they didn't think the blood flow was being restricted because the new hernia was large enough to give the intestine the room it needed to move about some, however they kept me in the hospital that night for observation.

When the doctor came in the next morning he told my Mom and me that he thought the best idea was for my Mom to take me straight to the University, and that is exactly what we did.

I was pretty much terrified. Me and my Mom both knew that there was still a chance of the hernia causing major life threatening trouble. When I was seen in the emergency room at the University they did yet another CAT scan. They said that it looked like I would be okay to wait until my scheduled surgery. If they did emergency surgery it would be only to fix the hernia, they wouldn't remove my bladder and I would have to have a seperate operation just to have the bladder removed. So I decided to take a chance and wait. They told me that if I had severe bloating, vomiting or anything like that to head straight back to the nearest hospital, because symptoms like that could mean my intestines had twisted.

Well I made it to my scheduled operation. I knew it was going to be a big and painful operation, but it turned out to be the most painful operation I had ever had and this operation was number 89. They didn't have an easy time fixing my hernias. Due to all the previous operations I had had where they had to cut my stomach and abdomin open. They had to come up with a new way of fixing my newest hernia, they had filet me layer by layer from the center of my abdomin to my left hip, and then use special mesh to repair the hernia. When they removed my bladder they also found that I had a second urethra, that needed to be removed. (When I was born I had 3 kidneys and two bladders, but they had never found the second urethra. When the March of Dimes finished doing research on me they told my parents I was supposed to be twins and that was why I had extra organs)

When I woke up I was completely shocked by the ammount of pain I was in. Even tho I was getting 75mgs of demerol every 3 hours, it barely took the edge off the pain. I almost ended up with pneumonia after surgery, but I was able to fight it off with the help of some strong antibiotics. The doctors had originally predicted that I would get out of the hospital after only 4 or maybe 5 days, but I was in the hospital for 11 days. I didn't really eat until about 7 days after surgery and then the first thing I really ate was food they grilled for the fall festival. My Mom stayed with me the entire time except for about 2 days.

Before surgery they had had a horrid time trying to get IVs in me and just as bad a time trying to get my blood work, they ended up putting a deep line into my neck while I was knocked out for surgery, so after I was released from the hospital I made an appointment with a local surgeon that I had gone to 10 years earlier. I went to see him about getting a new medi-port. (A medi-port or port-a-cath is a tube that is placed into one of the major veins in your chest and has a round disk attached to it and is under the skin, a special needle is inserted thru the skin into the round piece and it is used for IVs and blood work). He had done one for me 10 years before and it had worked great for me. With a medi-port it only took one stick to access it and I would have an IV for at least a week and they could take blood from it as well, without having to stick me repeatedly. The doctor agreed to do a new medi-port for me, and it was done the very next day. My medi-port was my 90th operation.

Oh yeah while I was in the hospital right after my big operation my urologist brought in some other doctors, and they did test on my back and the nerves in my legs. They agreed that I have severe arthritis and osteoporosis, I also have a herniated L4 and L5 disk in my back.

On top of all this I've been suffering from a kidney infection for the past 3 years. They tried everything they could to get rid of it, but I still have it. When I went to see the urologist for the last time before I came home it was confirmed that I will most likely never get rid of the kidney infection, unless there is some new antibiotic developed or something.

I will have to deal with the severe pain of a kidney infection for the rest of my life, and my back will only get worse. I am also looking at hip and knee replacements in the not too distance future.

I have to say that my urologist in Kentucky is an absolutely wonderful doctor. I have a cabage patch kid from the very first year they were released, and after I got her as a child the hospital I went to, in Florida, allowed me to take her into surgery with me. Well I took Mary Lou with me to Kentucky and I wanted to take her with me into surgery. Dr. LaGrange, my urologist, said it was no problem she could go into the operating room with me. Well when I woke up in the recovery room Mary Lou was laying right there by my in the bed, and she even had a bandage in the same area where my bandage was, it was exactly what my doctors in Florida used to do. So now Mary Lou has been thru at the least 60 operations with me.

But that was pretty much my adventure. After my last appointment at the University my parents only car died, so now they have no car, and no way to get one, which is very bad cause my Dad can't make it to his doctor's appointments, and he is not a well man.

My father suffered a head injury years ago at work, as well as having his back injured badly on the job. As time passes he is just getting worse. He now has a sleeping disorder caused by the head injury, he no longer enters into two of the more important stages of sleep, which is very dangerous the doctors say. His memory gets worse and worse as time passes, and his personality changes more and more as time passes.

My Mom is also having health problems, her blood preassure which normally runs low has actually been running quite high here lately. But with out a car neither of them are able to go to their doctor. And unfortunately there isn't anyone that they can get a ride from to the doctors. Pretty much none of the rest of the family comes around, unless they want something. But anyhow.


I am back in Texas now with my hubby Michael, which is wonderful! I will never be apart from him for so long again. My sister Tal and her husband Andy and their son James now live with us, which is very kewl, especially since I had never met my nephew until I got back down here and he is 4. The last time I had seen Tal and Andy, James was still inside his Mommy.

It's been great being back home. I just saw my local family doctor on Wed. I am being refered to a pain control clinic in Corpus Christi. I have to get in with a pain clinic because I will have to be on pain meds for the rest of my life, due to my back and my kidney, otherwise I won't be able to do anything at all really. If I plan on having a better quality of life than I have had since my health turned so bad I have to find a pain clinic that is willing to work with me and try to find a way to keep my pain under some type of control.

As of right now the only thing my family doctor will give me for pain is methadone, which helps the pain a little but I really don't like taking it because of the way it builds up in my system. The doctors in Kentucky had me on 100-200 mgs of demerol by mouth evey 3 hours as needed, and then I was put on percocet 10/325mg as well. That is a hell of allot of meds. I am hoping to find a combination that works better on my pain, but is a bit safer. And I hope I can find something that doesn't contain so much acetaminophen.


Anyhow I am very tired so I am going to close this up now. Sorry if this is a bit hard to follow, I haven't slept in a couple of days and have had a miagraine for 3 days now, and on top of all that I have a damned cold or flu or some shit. Bleh....Sis is sick too...Andy and James just got over a bug too.

I'll be around more often now.