Hello everyone

Hi my name is Paul Long Sorry this will be long. My saga started in October of 1972 when I got a cold while in Taiwan as a missionary for my church. I went to a doctor, and he did a urine test and I was dropping 4+ albumin but not blood. I was then transfered up to Taipei for more tests. Found out that I had strep induced glomerular nephritis. I was prescribed bed rest and a lot of penicillin. After a month of bed rest, I awoke one morning with terrible back pain. It was like someone had a knife in my back and was constantly turning it. I couldn't stand upright. Well a different hospital and more tests. Results, a major blood clot in my left renal vein and a shut down left kidney. Th doctor told me I had three choices: 1) do nothing which he highly didn't recommend, 2) he could operate which he said the methods in Taiwan were at least 10 years behind the US and he was the only urologist in Taiwan and had nobody to consult with, so he didn't recommend that, and 3) to go back home which he highly recommended. So 24 hours later I was on a plane to return to Salt Lake City, Utah. When I arrived home, another hospital and more tests. It was decided to put me on warfran to try to make the clots soften and the blood re channel. And it worked and I survived. Later when a friend of the family was typing up my records, we found out the the doctors didn't think I would survive. My hematacrit as 16, I had blood clots through out both my left and right kidneys.

I then had a 9 year progression of losing kidney function. During the nine years, I had an episode of nephrotic syndrome. At college unaware of hidden sodium, I gained over 60 pounds of fluid. Was hospitalized again. Had an episode of high blood pressure. Was hospitalized until could get under control and of course legions of tests. Had a case of internal bleeding from the warfran.

I started dialysis March 21, 1981. I was a bad month for my wife and I. We had the birth of our daughter on March 7th. We had to put her in the haspital because of jaundice. We got her out the hospital on Thursday. On Sunday I went in the hospital to put my graft in. My wife got me out of the hospital on Friday. Then we I was at home I was vomiting, very confused and just not with it. She called the nephrologist and he wanted my to start dialysis the next morning. So it was to be. The third treatment I got home and passed out in the bathroom. When I started, they didn't use bicarb. So you crashed more easily and more often. Also, they only used single needle.

Three month into dialysis I got prioprisms. Another trip to the hospital and surgery.

I had my first transplant on September 18, 1982. My dad was the donor. Three days into it, I got a urinary leak. They fixed it but then the kidney went to sleep. Two days later had an infection in the incision. So they opened it up to clean out the infection and left it as open wound to heal. Then had a rejection episode. Any way the kidney worked off and on until six months later finally quit.

The next exciting things were parathyroid operations in April 1984 and October 1984. The one in April went okay, but the one in October didn't. In October they searched around in my lower neck and split and cleaned out my sternum trying to find the parathyroids. They found three, but couldn't find the fourth. I went into respiratory failure, had to have a tracheotomy and put on respirator. Then the trach hole didn't fully heal and had to have a surgery to revise it. In September 1988 had my second graft put in. In April 1992 had my fistula put in.

After that things were fairly stable until I decide to have the second transplant. Because my PTH had been very high after the last parathyroid operation, I need to try and find the fourth gland that wasn't found the first two times. Anyway the did a nuclear scan and finally found the fourth gland and also a fifth gland. They had never descended and were still in the upper part of my neck. So I had surgery to remove them. Then I was transplanted a second time on October 31, 1995. It was a Caddric transplant and only lasted eight days before it rejected. Anyway, dealt with an infected open wound again, that had to be revised 3 times before it healed In between time I had to have a left nephrectomy because of a pre cancerous tumor. After that things went along pretty good again.

Then on January 5, 2006 I went to dialysis and 5 minutes into the run, I had a cardiac arrest. I had bronchitis and was taking Z-Pak. Don't know if that had any thing to do with it. My potassium and magnesium were too low. I had two more arrests at the hospital in 12 hours. Anyway survived that. Then on January 23, 2006 was again at dialysis. The whole day I hadn't felt well and at dialysis was chilled and couldn't warm. Coming off the treatment my temperature was 101.5 F. They told me to go to emergency, so we went. Come to find out, my Lipase was 18,300 and my amalase was 850. I had a severe case of pancreatitis. Two weeks in the hospital fasting 8 out of the 14 days. Came home with a feeding tube for two and half weeks. Then a non fat diet.

In August I had a gall bladder operation. One week after the gall bladder operation, I started to bleed internally where they hooked everthing up. They had to give me eight units of blood. They cauterized it. Thought every thing was fine. Then a week and a half later began to bleed again. This time I received four units of blood. Since then things of been fairly calm with the exception of two minor episodes of a prncreatitis flare up.

Why do I go through everything that has happened to me? I now have been on dialysis for 28 and a half years. During that time, I have worked full time until 1999. I then had my own business selling insurance and securities until I finally had to quit that. But I still work during tax season and I am now trying to start an on line business. Even thought there are many things we can't do, there are many things we can do. Attitude has everything to do with it. Many people I have seen over the years that have negative attitudes do not stay around very long. I am not saying that you will survive as long as I have, but having a positive attitude and a reason to live will fare better. If nothing find something you can volunteer at. Anyway that is my rant