I am home again....I don't know for how long. It seems that I can't even stay out of the hospital for a whole week anymore. I was home for about three days and was scheduled to undergo surgery to replace the nephrostomy tube in my right kidney and possibly place one into my left kidney last Monday. Unfortunately, before the Thursday before my pain became totally unbearable. I didn't feel sick as I have with all of the infections that I have been going through lately, but I just didn't think that I should be tripling up on my Ms-Contin and my break through medications. My urologist had me admitted to the hospital in Green Bay where, yes, I had yet another infection...actually pretty mild. But, there was a larger obstruction to my left kidney. They did postpone my surgery until Wednesday when I was feeling more up to it. At that point they went in through my back (all while I was awake) and removed the original nephrostomy tube in my right kidney and placed a new one. They then placed a stent into the right kidney. Just when I hoped and prayed that they were done....I was crying because the pain was so bad....they placed another tube into my left kidney and a stent into that one as well. They had me on vancomycin almost every day of my hospitalization to that point and I still managed to develop an infection along with pneumonia and high fevers. I was sent home on Saturday with the tubes actually clamped off to try and get all of the drainage to come through my urostomy. Hopes are to be able to remove the nephrostomy tubes and just have the stents...boy would I love that because these things are impossible to sleep with.
Anyway, I went in for my first dosage of outpatient vancomycin last night and learned that I was running a fever again so the tubes had to be unclamped. Please realize that they have been trying to remove the tube from my right kidney since August and they are starting to believe that I may be stuck with that one for the rest of my life since when it is clamped most of the urine just backs up until being unclamped....thus all of my infections. I hope you all can follow this. Now I have two of them and I cringe at the thought that the left kidney could have that same result....that I would have to live with these tubes coming out my back for the rest of my life. This may sound trivial to all of you...but it is soooo painful and I am feeling sooo sick.
I was thinking about all of this today and I began to wish that I had cancer. Not to trivialize that disease...because I know that it reeks devestation...but at least with cancer there would be an end. I have been suffering with all of this since 1991. At least, that is when all of the surgeries first began. I thought it was bad when I was having all of those surgeries in the early 90's...26 of them from 91-99 with probably 20 of them being from 91-95. I learned to say no to anymore surgery. But, when all of the stuff started getting bad with my kidneys and doctors said that the next infection could kill me, I started wanting something done. I am ready to die...but, I am a fighter and would never just roll over. Enter a brilliant urologist new to this area whom when he entered my life at the beginning of this summer had ideas to help prolong my life when my doctor wanted to put me in a nursing home. Mind you...I am a relatively able-bodied (meaning I can walk, talk)46 year old. I don't need any nursing home...so I jumped at the ideas he had...and my doctor thought him to be brilliant as well. This doctor developed different plans to try and correct the problems with my kidneys...everything short of abdominal surgery which he would not try nor would I allow him to. But where has this gotten me? I am much worse off then I was at the beginning of the summer. The pain is so intense. My daughter worries because I cannot eat and the weight just falls off....luckily I have been overweight since giving birth to her. Even the thrill and enjoyment of seeing my grandchildren is darkened as each hug and kiss is filled with pain. All they have to do is touch my back and I scream in pain....never meaning to scream at them...but scaring them at the same time.
Today, for the first time, I went to Walmart and had to ride a motorized cart. All the friends that I ran into thought I looked awful...I didn't argue because I felt worse than that....but I am sure the total stranger wondered why I was being lazy...except they did stare at the iv tubes hanging from my neck. I don't want to be this helpless person. I want to walk through the aisles...even if it hurts..but I know now that I can't...at least not now. I apologize for this email being so negative. I always try and be positive. But I have realized that at least with cancer there is an end. Either I'm cured or I'm dead. At this point...I'd be happy with either result.
Every time you think about having surgery because the pain is so bad....think of me. If you can't get to the best doctors out there.....don't do it. A lot of people don't like it when people tell them not to have surgery....I don't care. I say it because I can....and because I care enough for each and every one of you to want to scare the crap out of you so that you won't do anything you will regret in the future.
Love ya!!!