7/20/09 -  WOW! It's my birthday and I have actually made it to  59!  This is an accomplishment because I was diagnosed with kidney disease 38 years ago.  Who would have thought!  Anyway, enough of that.  Let me tell you a little about myself so that you'll understand this blog.

Bob and I married 5/71 and everything was blissful until I began having urinary infections.  They kept coming, one after another.  I would get over one and another would begin.  I began seeing a urologist who did cystograms once a year.  At that time the problems with the dye used were not known and I probably had10-12 done over the years.  I was told to hold off having children until the problem was brought under control.  Finally the proper medication was found and we went merrily on with our lives.  The fact that my urologist mentioned that I would need a transplant down the line made little impact on us.  We were young and the future didn't concern us.  We adopted a beautiful daughter and my life couldn't have been happier.  Let's skip to 20 years later.

Feeling tired but went to my MD for another problem.  Happened to mention the tiredness and that while not young, not ancient either and shouldn't be this tired.  Ran bloodwork and sent me immediately to a nephrologist.  Scared me to death.  He said I would be on dialysis within 6 months.  I had no symptoms other than being really tired all the time.  All I could think of was being constantly hooked up to that big machine and dragging it through life for the rest of my life and those needles, well let me tell you, they looked really big in the pictures!  How would I live? How would my marriage survive?  I like to camp and fish, how lon of a cord is one that machine I would be dragging along?!  What was I going to do?

Sometimes it gets so frustrating and I guess I sometimes need a little help with the way I try to teach new kidney patients.  I try to be direct and not mislead but it seems that lately family members and patients alike want to be told that everything will be OK right away or that the end is here and why do anything.  I keep saying the same things over and over again sometimes feel that I am making no headway.  I don't want them to be scared but as we all know that is how we begin.  We were scared, confused, ignorant of what is and will happen.  What approach should I take when addressing their concerns?  How would all of you preferred someone explaining ESRD to you?  I take what I do very seriously and certainly don't want to make the fears worse but there should be understanding that we are not playing a game and should prepare ourselves for what will come.  I guess I just felt like I am hitting my head against a wall and inside I know I always will.

Linda