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Bill

Bill

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Shared experience with Kidney Biopsy 8 years ago

I was presented with a diagnosis for a major life-threatening kidney disease (focal segmental glomeroscelerosis) and told that the only fast, clear and certain way to substantiate the diagnosis was to have a kidney biopsy. Needing to know so that I could plan a response, I scheduled one immediately with the best person at the best place I could arrange. I was told I might experience a sharp pain - which I did. It was very sharp, but it was brief. Afterwards I was fatigued for a day and had lower back soreness for a couple of days, all of which was acceptable and worth it; not knowing was an impossible alternative and much more destructive. The diagnosis confirmed, I was motivated to find the best MD I could and with his help and good fortune, against the odds, with his help, treatment, and years of having the condition stabilized, I was declared healed. So, in fact, I'm grateful for that biopsy as it gave me the information I needed to take care of myself and get help.

I was presented with a diagnosis for a major life-threatening kidney disease (focal segmental glomeroscelerosis) and told that the only fast, clear and certain way to substantiate the diagnosis was to...

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I was first diagnosed with sleep apnea by the UCLA Medical Sleep Clinic 15 plus years ago. At the time, sleep apnea was relatively unpublicized and I was referred to UCLA only after my very able and esteemed personal doctor declared that, despite my complaints of exhaustion, extreme discomfort and unease, falling asleep in movies, meetings, during conversations, and, frighteningly, while driving, I had passed all the physical tests and - "good news" - I was fine. I asked him if that were so, why did I feel like I was dying? He then referred me to the sleep clinic where, after one night wired up, (sounds daunting, it's actually no big deal), the chief clinician reported that I had a severe case of sleep apnea; so extreme, that she did not want me to drive and asked whether I had experienced hallucinations, the likely next step in my ailment's course. She asked if I snored? "Yes". Did I snore as if I were choking - snore, rasp/catch, pause, snore again, to be repeated endlessly? My wife said, "Yes!" I was told in fact I WAS choking, and that I was failing to get restful regenerative deep rem sleep because of the apnea. I was ready to try anything (not necessarily a good state to be in), and when they suggested a CPAP machine would bring relief from my symptoms, if not from my condition, I agreed. (Surgery was discussed, but finally not seriously considered because I was told it was complicated, painful, and unreliable, and that it seemed wise to try out the CPAP first). I was however anxious about the prospect. I was also told I should use a good wedge pillow so that I could sleep with my head partially elevated while using the CPAP. Could I really sleep through the night like this? Every night? How complicated would this machine be to use and maintain? How loud was this thing? Mostly though - wait for it - mostly, how unseemly would I be to my wife and scary and cartoonish to my kids? Turns out, for me at least, the only good thing about being so desperate is that I was willing to try anything, is that I overcame my vanity and false pride, heeded the medical advice, talked openly and vulnerably with my wife, and went forward with the remedy and found a way to restore my health. The cpap machines now available have many options, are covered by most insurance, are quiet, portable, and after a brief adjustment period, comfortable. And they do not have to be inhibiting; that issue really speaks to you and to your partner. And consider the alternative. Separately, let me mention two not so positive things to consider: one minor, one major. First, be aware in selecting a CPAP machine and apparatus you're likely to encounter some slick salesmanship under the guise of professional medical advice, often encouraging you to go above what your insurance covers. Second, when I was first diagnosed with sleep apnea I was very defensive about it's likely relationship and association with obesity and overeating. For me it was real, and a shameful secret that I kept only from myself - no one else was fooled. I was in denial. When I got past being in denial, I was ashamed and scared because I seemed unable to control the problem. In my experience, in that condition, you're subject to quick, one time, overly simple, and sometimes drastic (and costly) remedies presented by even reputable institutions. Be cautious, be energetic, and seek help - and always get a second or third opinion.

I was first diagnosed with sleep apnea by the UCLA Medical Sleep Clinic 15 plus years ago. At the time, sleep apnea was relatively unpublicized and I was referred to UCLA only after my very able and...

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