Depression, ER's & Dr.s

[RebeccaF]

I have just had an awful time lately, but with sunlight on the way! First I wanted to warn anyone with symptoms of depression...PLEASE don't ignore it! I have been so frustrated because of the last two years with this disease that my depression turned severe. I, like the previous posters have had what is now non stop pain. I have had doctors tell me that it is impossible without a stone because the kidneys don't "feel" pain. The continuous pain, no answers, losing my job and my family almost losing our house because of our reduced income led to a suicide attempt. There is more than the physical to this disease. Please always be aware of the emotional aspects and don't hesitate to get help! I had the unfortunate experience to have to go to the ER this week only to get the doctor who had seen me after the suicide attempt and who proceeded to tell me I had been in the ER an excessive amount this year (even though it was documented cases of stones, blocked stents, infections etc.) and that I was basically a very mentally disturbed individual who was just drug seeking. Needless to say, it was not a pleasant experience and I chose to leave the hospital rather than deal with her ignorance. Luckily there is hope out there. I am working with a wonderful therapist, am working with a pain management doctor and was just approved for disability through Social Security which greatly improves my family's financial situation. I know that things can get very rough with this disease, but if you're diligent you can find the help you need. For every doctor that dismisses you, there are many more who will work with you. Good luck to everyone in the New Year, HAPPY HOLIDAYS!! and God Bless!!

[cmurphy]

Thank you for your candor. All the best to you...

[Matt Lewis]

Rebecca,
Thank you for sharing with us. I hope there is more and more sunlight on the way for you! It sounds like you've brought yourself a long way, and are now in good hands.
Keep in touch,
matt

[gowanstl24]

... I have had doctors tell me that it is impossible without a stone because the kidneys don't "feel" pain...I had the unfortunate experience to have to go to the ER this week only to get the doctor who had seen me after the suicide attempt and who proceeded to tell me I had been in the ER an excessive amount this year (even though it was documented cases of stones, blocked stents, infections etc.) and that I was basically a very mentally disturbed individual who was just drug seeking...

I'm late in seeing this thread but I'm so sorry about what you've gone through! Minus feeling suicidal, I had similar experiences. At one point I was having a real hard time with pain control. I had no stones in my ureter, but several bilateral stones in my kidneys that WERE causing me intermittent, severe pain. A CT scan ruled out infection, swelling and bruising from a recent lithotripsy, etc. I was extremely depressed, stopped taking my meds, drank less water, ate less, slept a lot and was up all night...I was a mess, and I only snapped out of it after a trip to the OR and a successful ureteroscopic procedure.

More recently, my urologist told me something similar about kidneys not feeling pain, but he said, "...but patients know their bodies better than anyone," and he truly believed me. Then he'd go in and break my stones up and I'd feel fine. Coincidence? I don't believe so, because I had been stone-free for a while, so it wasn't all in my head. Right now even, I'm experiencing moderate bi-lateral pain in my kidneys. I have 7 stones all together, and I feel pain on one or both sides each day. I don't know why if kidneys aren't supposed to send out pain signals unless it's swollen, etc. None of this makes sense to me, but the pain is very real and living like this sucks. I haven't even bothered going back to my urologist about this. Is there a point? -_- Not really, plus I don't want to be judged.

Also, I had one jerk of an ER doc accuse me of drug seeking. I don't blame him...I was allergic to Morphine, refused dilaudid because of the nausea it caused me in the past, said demerol didn't work....all as if I was fishing for something. I had even brought my old pain pill bottles with me so he could see that none of those types were working. He had all sorts of attitude, and finally asked, "Well, what's your drug of choice then?" and I said, "IV Toradol and zoforan please," (because I was nauseous - not because of the toradol) and he looked shocked. THEN he looked up cystinuria online, and THEN he sent me out for a ct scan, and boy did his tune change when he saw the 8mm stone in my ureter. He talked me into taking dilaudid and pumped me up with reglan and promethazine too! I've never heard someone sound more apologetic without actually saying, "I'm sorry!" I was so pissed that he was such a jerk. Oh, and when I left, I dumped all of my meds on a table he was standing next to and said something like, "I hope you never have to deal with pain like this and then get dismissed when you hurt the most. I don't need these. They don't work," and left. Thankfully, I haven't run into him at the ER since.

Side note...before I left Japan to come back to the States, I stopped by my urologist's office to pick up my medical records. A young kid was behind the desk, and he had assisted in each of my 6 surgeries while I was in Japan. He laughed and said, "You were one of the few people who actually had something wrong! You wouldn't believe how many people come here for meds for their kidney stone pain when they don't have detectable stones!" So, I get it that patients lie to score meds, but ER docs really need to give people the benefit of the doubt, especially if they come in sounding half-way intelligent about a chronic condition.

Sorry for all of this venting, but yes - it's more than physical, but of course the physical and emotional often go hand-in-hand with chronic stone and kidney pain. I was an air traffic controller before all of this started happening. Then I downgraded to a Solaris system administrator, and now here I am, working out of the house because I know if I went back to an office, the time off would have me fired with the quickness. This disease took a big part of my identity away from me, something I'm still mourning.

My disease is way more in control now than it used to be, thanks to my diet and possibly the thiola (still too soon to tell), but this still sucks big time. I'm thankful for the few people in my life who believe in me and what I feel.