Date: Sun, 20 Aug 1995 08:02:22 -0700 (PDT)


Well, its been an interesting week for me. As you may or may not know, I have been having some physical problems relating to my kidneys. As far as I know, it started last year in October with some blood in my urine. I went to the Dr., and it was diagnosed as a UTI (urinary tract infection). I was prescribed antibiotic and the problem went away. 9 months later, I began having blood and discomfort in my left side.

I was referred to Harbor/UCLA medical center (I don't have insurance) where I was given an IVP, which is where they inject dye into the blood stream and then run about 20 x-rays of the kidneys, ureters and bladder. I was given an appointment with the urology clinic for three weeks hence. Anyway, I wasn't feeling great, but I was taking a mild antibiotic that seemed to help.

Well, I started having blood again a few days before my appointment. My appointment was brief (after waiting 4+ hours (it IS Harbor, after all)). The Dr. said that I had signs of Papillary Necrosis, which means that one of the small nodes in the kidney had given up the ghost. The bleeding and pain were a result of this condition. He said to come back for a Cystoscopy in 3 weeks. Well, that was Thursday.

On Sunday, I was strolling around Seal Beach pier with Tom, my step bro and his 1/2 bro. We sat down and ordered lunch in one of the local eateries, and then I was overcome with the most amazing pain. It was somewhere between stabbing and tearing. I knew instantly that I was passing something. I managed to drive myself home and pounced on the Vicadin, which helped a lot. I lay on my back all day and all night, and finally, the pain subsided. Monday morning I was feeling much better. Until noon, when the whole thing started again, only this time it was so much worse that the Vicadin didn't even take the edge off the pain.

I drove myself to Harbor, and was admitted to emergency within the hour, which is amazing, because the normal triage time is about 6-8 hours. After really good pain medication, an IV and another IVP, they determined that my left ureter was obstructed (duh!) and that I needed to come in the next day for a stent. Well, I did. I mentioned the Cystoscopy earlier. Let me explain.

A doctor takes a stainless steel tube about 12-14 inches long and just a tad over 1/4 inch in diameter and forces it into the urethra, past the prostate and into the bladder. They use a numbing jell for lubrication, but it doesn't numb much. She had a look-see, and then pulled the whole thing over to the right so that it was aimed at the entrance of the left ureter. She then ran a thin wire into the ureter and up into my kidney, then slid a plastic tube over the wire and up into my kidney. She then removed the wire and then the Cystoscope, slapped me on the ass and told me to beat it. (just kidding)

Anyway, now I have a tube in me which, I understand, will be my pal for at least three weeks. The unique and charming thing about this tube is that whenever my bladder develops any pressure, it forces liquid back up into my kidney, which feels something like pliers scrunching my kidneys. It's a drag, but its livable. I have an appt with a nephrologist tomorrow, and hopefully we'll be able to determine the cause of the necrosis.

The moral of this story: Drink Lots of Water! If anything else develops, I'll let you know. Thanks!

Date: Fri, 15 Sep 1995 02:31:11 -0700 (PDT)

So, I went to the Dr last week and had the tube removed. The whole process was more painful this time because, according to the Dr, the tube causes swelling internally. In order to remove the tube, the Dr normally threads a wire through it, then slides the tube out over the wire, in much the same way she put it in. But unfortunately, the tube was obstructed, so she had to pull the scope out with the tube, then reinsert the scope for further testing. The second time in was not fun. (ouch)

Anyway, after several x rays, it was determined that things seemed to be flowing fairly well. There is no definitive prognosis, so I must wait another month, and hopefully all will be well. My energy level is still lower than it was previously, but that could be for any number of reasons. I still have quite a bit of mental anxiety (sp?) because I fear that, at any time, a chunk of kidney will go cruising and bring on the awful pain I experienced. To help deal with these concerns, I always carry my pain medication with me. Its hard not knowing if it all could happen again. Anyway, take care!

Date: Sun, 17 Sep 1995 21:49:45 -0700 (PDT)

Hello. I just wanted you to know that I have been feeling better. I haven't had any pain to speak of, and I haven't seen any signs of bleeding since the Dr removed the stent (the tube). Of course, there was some bleeding for the first 3-4 days after the removal, but that was from being reamed out twice (that's 2 times) by the cystoscope. Anyway, From that experience I discovered exactly where my prostate is. (eesh) Well, that's it for now. Hopefully I'll have the photos back this week sometime. until then, ttfn

Date: Wed, 7 Aug 1996 13:25:31 -0700 (PDT)

Well, you last heard of my Kidney problems last September, but guess what? There's More!

After having some vigorous physical exercise and downing two big glasses of cranberry Juice, I started bleeding about 3.5 weeks ago. I began having pain, and realized that I was passing more material. I became aware that I was obstructed in my ureter AND from inside my kidney.

I went to Harbor Emergency and waited for nearly 14 hours before they brought me in, and it was another 5 hours before they sent me up for an IVP (for those who don't remember, an IVP consists of an injection of contrast dye and a series of X rays that show the progression of the dye through the kidneys, ureters and bladder). They injected me at 9:30 AM, took the 1st batch of x-rays, had me wait an hour, took another, and determined that I was obstructed from within my kidney. (I had already told them that!) They shipped me back down to ER, where I sat for another 5 hours, while the pain from the dye got worse and worse.

The ER doctor finally showed my x rays to the attending ER urologist and he said they should punch a needle through by back and into my kidney to immediately drain it. They sent me up to Urology, and instead they gave me another stent (the plastic tube that runs from my kidney into the bladder).

I've met with the Dr once since then and he doesn't agree with me that this is a second sloughing of the same damage I received nearly two years ago. But he doesn't have any idea of any other cause. So I am scheduled for yet another IVP. Its been three weeks, and I am still bleeding from my kidney. I've passed very little material. More when I know more. Hope all is well with you. Ttfn

Date: Sat, 7 Sep 1996 11:51:58 -0700 (PDT)

Just a brief update. I had another IVP, and met with my urologist again. He said that the x-rays showed continued sloughing of material from my kidney. Additionally, he said that the urological methods for diagnosis had been exhausted, and so he was referring me to a nephrologist. Now, I didn't realize until recently that urology was a surgical specialty. Happily, nephrology is an internal medicine specialty, and so, hopefully, they will be better equipped to figure out the problem rather than just addressing the symptoms. The other downer was that, up until a month ago, all my problems resided in my left kidney, but I am quite sure that I recently passed material from my right kidney. That was quite a surprise, to say the least! Anyway, I am not feeling too poorly, just a little tired. I'll let you know what my next appt. yields. Until then, take care.

Date: Sat, 16 Nov 1996 10:41:34 -0800 (PST)

Well, I had my final appt with Nephrology last week. After doing a number of tests, they told me that there was nothing wrong with me. To be more specific, they admitted that my kidney may be damaged (in that there may still be necrosed papilla in my kidney) but that it's function has not been impaired, nor is there any systemic problem that would be causing my papilla to necrose. That is good news.

I actually spoke to an attending physician after harassing the resident into asking for a CT scan. The attending said NO. So I go on, not knowing if I will slough more tissue, become obstructed and require emergency procedures such as IVP x-rays or another cystoscopy. Hopefully I'm done, but that's what I believed last time. So I continue. ttfn and thanks for all of your kindness, concern and support throughout this difficult period. I will let you know if anything changes. Sander.

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