I'm so glad I've finally found an actual online community giving renal failure/dialysis/transplant patients a place to vent and share...I've been looking for almost two years, and in that time have talked to only one fellow PD patient (in person incidentally), so I'm eager to hear other people's stories as well as share my own.
So much has happened to me in so short of a time that I almost don't know where to begin! Basically, I'm 28 years old and was diagnosed with glomerulonephritis back in fall 2001. I probably had it for some time before then - I'm sure many people here have heard how the causes for kidney disease are ideopathic more often than not, and my two biopsies never gave any conclusive results as to why it happened, apart from ruling out genetics. After my diagnosis, they gave me meds to control my BP and cholesterol but that was about it - at the time, my overall kidney function was about 50%, not too bad.
But, of course, insurance fun reared its ugly head. I left my job as a preschool teacher after 3 years, mostly out of exhaustion (for obvious reasons!). And I was young and fairly innocent - it didn't really occur to me that I would have much of a problem finding health insurance or help getting it. After all, this was America! I did find fairly steady work substituting, while taking night college courses, but there was no health insurance - therefore, doctor's appointments were few and far between.
I had attended college previously from 1996-1999 - I did the usual party routine as a freshman, but couldn't pull off the academic thing at the same time like many of my friends somehow did. I think the kidney thing was probably going on even then - i was always tired and had colds, bronchitis and such. Anyway, in 2004 I applied to and was readmitted to that same school so I could finish what I started - I'm a redhead so I can be a little stubborn sometimes!
At the same time, though, my kidney function started going down pretty fast. I found a good nephrologist in my new town, recommended by a family doctor friend, and all of a sudden I was being talked to about dialysis and transplant possibilities. I didn't know what to think, how to feel, except maybe resentful and self-pitying...the trouble was, I didn't have time to sit and brood - I was a music major with classes, recitals, papers, and new friends to see and talk to, and for that I'm actually so grateful. I don't know what I would have done with myself if I hadn't been so busy. It took my mind off of how I felt physically.
I was also trying to find insurance, of any sort. My kidney function went down slowly but steadily - but I couldn't qualify for Medicare until I hit the magic 10% number. In the meantime, I paid what bills I could (practically none) and sent most of them to my father. At age 26, it seriously SUCKED to be put back in that sort of financial dependency, but I honestly had no other options available to me. This is when I first really started getting interested in political activism with this topic in mind - I think the health care system here is an absolute national scandal! But then again, that's another thread isn't it?
Anyway, yeah yeah, I know my story's not unique here, but God does it feel good just to TALK about it! I'm getting better at opening up to family and friends about things, but for the longest time I was reluctant to discuss my feelings at all, beyond the casual "Oh, it's been rough but things are getting better". I guess in my effort to be strong, I went a little too far in the other direction. I do tend to go in one extreme or the other, they say.
I walked across the stage and graduated this past May, all except my senior thesis which I'm planning to finally finish next week if all goes well. My kidneys finally, officially went kaput in late June (yeah, I celebrated! Medicare! Disability! Woohoo!), and a week later I underwent dialysis port surgeries. My PD port was installed but since it had to heal for about six weeks I had to do hemo in the hospital and then for a couple of weeks at a clinic. Apart from a few complications, PD has been such a blessing...I don't feel 100% by any means but the difference between now and before my surgery is like night and day, and the freedom I have to (sort of) come and go as I please with the overnight cycler helps me feel a little closer to normal - whatever the hell THAT may be.
I'm a little overwhelmed at the moment - my father, sister, and her boyfriend are driving down from New England late next week. My sister is going to begin tests at the hospital down here, and if she's a close enough match...we actually have the TRANSPLANT scheduled for the 2nd of February. I've been on the list for about three months now but the chances of randomly getting one right now are about zilch I know. So, I won't know for sure if the operation will even happen until next Tuesday. I'm trying not to get my hopes up too far, but I know my sister's the best option I have family-wise...we'll see.
And all this doesn't even come CLOSE to listing what all's happened to me recently...and if there is anyone still with me to the bitter end, I thank you for sticking with it. It's such a weird and emotional time for me right now, and I'm so glad I found a place with people in similar situations - I never thought I'd find it.
I Hate Dialysis Message Board
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