Hello from Pennsylvania!

DADOTTER

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Hello from Pennsylvania!

« on: February 10, 2008, 05:59:07 AM »

My name is Darline, and I'm a 57 year old retired elementary school teacher. I was born with only one kidney on the right side, which wasn't discovered until 1989, when I was diagnosed with Multiple Sclerosis, hospitalized, and developed a severe kidney infection as a result of the treatment. At that time, my kidney function was still 100%, but over time it slowly decreased until it dropped to 45% in 2001. I then started seeing my nephrologist, who treated me with the renal diet and meds in order to prolong my kidney function, but couldn't identify the cause of my kidney's decline. Around the same time, my neurologist discovered that I also had Antiphospholipid Antibody Syndrome, which basically causes clots in one's blood/arteries (I've already had four bypass surgeries and at least one to two angioplasties each year since), an atypical form of MS (I still walk well just using a cane), loss of kidney function (solved that mystery), and several other nasty little side effects (migraines and spontaneous miscarriages, i.e., no children).

This past June, my nephrologist suggested that I start to prepare myself for dialysis, as my GFR was then 22%. I entered my denial stage, certain that if I continued to faithfully follow my diet and take my meds, that I could prolong the life of my kidney...I refused to even consider that it would fail. On Thanksgiving night, I began to experience severe pain in my back, right in the area of my kidney. By 2:00 a.m., when I called my brother (I live alone) and an ambulance, I was on the floor in agony. After I arrived at the ER and had all sorts of tests done, I was admitted to the hospital. My nephrologist came into my room around 7:30 a.m. and told me that my kidney function had dropped to 13%, and that I no longer had any choice other than to have a catheter placed in my chest that morning, and to start dialysis that afternoon. I just remember thinking that this could not possibly be happening...kidney failure happened to other people, not to me! I was in the hospital for seven days, had three dialysis sessions, and started in-center hemo the day after I was discharged.

For the first month of treatments, I either vomited, cramped, or passed out almost every session. I don't become nauseous as much anymore, but I cramp all the time and still pass out periodically. The nurses don't understand why I cramp so badly, as I don't gain much fluid between sessions (I'm 5' tall and my dry weight is 42 - I usually come in at 42.3 to 42.5). I keep thinking that this is no way to exist, especially as when I get home from each treatment, I collapse with exhaustion and am unable to function. Sundays are the only days when I seem to have any energy to do anything. I hate my catheter with a passion, and have put off having the fistula surgery because I don't think I can deal with the pain of the needles every other day. Each day when I wake up, I'm sure that this has all been a bad dream and I'll be fine...I just can't get my mind wrapped around the fact that I need to be hooked up to a machine for the rest of my days on the planet, just to stay alive. Oh, I should mention that I did have a transplant evaluation in January, but of course, with the circulatory problems resulting from the APLA Syndrome, I was not considered to be a viable candidate, even though I had four potential living donors.

I've always been a very strong-willed individual, who has faced, dealt with, and overcome many other adverse situations in her lifetime. My parents and siblings are at a loss as to what to say to me, as they're not used to seeing me giving up and acting in such a defeated manner. But, I just can't seem to accept this latest setback in my life. I am seeing a psychiatrist to help me deal with my situation and am also taking prescribed antidepressants (which don't seem to be helping a whole lot).

I'm glad I found this site, as I know that I'm not alone in my situation and my feelings. It's a relief to have a place to come to vent and ask advice of others who have "been there and done that". I'm thanking all of you in advance for just listening and sharing any advice that you might feel will be of benefit to me!


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Joe Paul

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