Part two of my sucky story!!!! It's a long one too.

Part two to of my sucky story!!

The doctor told me I needed to keep the catheter in my new stoma for at least six weeks before removing it for good. I told him it was extremely slow to drain and not amount of flushing helped, he assured me all was OK. Even though the catheter came out a few days post-op and all he could get back in was a very tiny catheter. So I go into the office for the big day to remove the catheter and begin my several times a day emptying through the stoma. He did not bother to tell me what type, size, nothing as far as a catheter went, I suppose he thought since I worked at the hospital I knew or maybe he just didn't care!! I also need to back up a bit and add that right before this last surgery he had gotten a partner up to that point he'd been in practice alone. OK so back to the DAY from HELL, I go to lunch with a friend and drank way too much iced tea, I was slightly anxious to catheterize myself for the first to be begin with but in a public restroom, even more so. I tired and the catheter just wouldn't go in, I tired not to panic and thought OK I'm stressing too much about this. I left the restaurant went home and thought all would "work" at home, no need to worry about anyone hearing the opening of the catheter or me cursing. Nothing again, so I begin calling my nurse friends, both had the same thoughts as me CALL THE DR NOW!! So I did, he was stuck in traffic with his partner coming back from DUKE U for a conference. He didn't want me to go to the ER and have someone "mess up" (his words) his work. He told me he'd call me as he and his new partner got closer to the office, which ended up only being about 30 minutes but seemed much longer with a full bladder and the stress of "oh hell something isn't right, this can't be good". I go to the office and he begins poking any urological tool he could find in my stoma, all the while screaming at me, "what did you do to this, it worked for me this morning" (which in fact he NEVER even tried it before I left the office). He kept telling me and his partner he wasn't taking me back to surgery he was fixing "it" here, nice huh? I began to feel very badly for several reasons, mainly I to freaking pee like hell, I was tiring from all of the pain he was causing, they were pressing on my tummy like mad, and I was just plain scared as hell. The next thing I know he yells to his partner to take my over to the ER and get the OR ready, not thinking clearly at this point when he left the room I tried to stand up after getting off the table and I hit the floor. His partner NOT my doctor comes running in and helps me up and drags me to his car, all the while I'm now bleeding from the stoma like hell and my tummy is really hurting but not like I had to pee sort of hurt. I felt so bad at this point I couldn't be scared. So we get to the ER I over hear the his partner tell them to call the OR that they've ruptured something but I didn't hear the whole story, still not too concerned about much other than peeing, I didn't worry, how stupid of me!! So they take me to the OR, and revise the stoma and the conduit, I stay in CCU over night. I ask the next day what ruptured? I'm told oh nothing why would you ask that, I told him I over heard the conversation with the OR staff the day before, "oh nothing was ruptured you weren't feeling well you thought you heard that but didn't", OK I'm stupid I "bought that shit from him". So another recovery process and time goes by slow as hell, but I do recover and finally have the catheter removed and begin self cathing, not problems this time other than leakage. Which I had been telling him about since a few days post-op, I was told it was leaking because the catheter was in the stoma and it the stoma wasn't made to hold a catheter, so again I "bought the crap". Time goes by and I am soaked like crazy, he never offered any advice on what to do or what we could do to fix it, only that now it will take time to heal and then it'll stop leaking. UM no dumb ass it's still leaking after 13 year, wonder how long it takes to stop leaking??? Ha! As time is passing I'm still having infection after infection, I used a new catheter each time and was very sterile in doing the cathing, nothing helped. I also was dealing with a ton of right flank pain, just like I had when I had the obstructions of my ureter, I tell him this time after time, he blows me off telling me I just used to taking pain medicines and so my pain tolerance is very low at this point but I'll be OK soon. RIGHT! So I get brave and go for a second option, at a university hospital, I tell him the entire ordeal and ask him not to contact my doctor about my visit until I could tell him, he agreed. Only he lied and called him as soon as I left his office. So I get a hateful message from my doctor telling me he wants to see me RIGHT NOW!! So I head over there and he screams and yells and stomps his feet like a child because I second guessed him and if I'd only told him I was going for a second option he'd have not looked like the ass he did when he got the call. Can you see who he cared about more me or him own ego???? While at the second doctors he did some x-rays and found I did indeed have a blockage and he wanted to fix it, I was stupid and said no I'll go to my doctor right away and he'll take care of it. Let me back up the second doctor didn't really give me any information on what he'd do or not do, his main concern was getting the blockage opened and then go from there. Back at my doctor's office we talk about the obstruction and that he feels it will "pass" that it's not a true blockage, just mucus from my bladder refluxing and we could just watch it. As for pain meds, oh hell no he gave tordal, which is an anti inflammatory drug, didn't touch my pain, but if I mentioned pain he mentioned me being "too used to pain meds" deal again, whatever, ass if that was the case I'd have gotten narcotics from any doctor at the hospital, when you work in one you know who will give what, but I had such drug seeking behavior I NEVER once got pain meds from anyone other than him. By this time it's the fall of 1997 and there is talk my husband is going to be transferred, which would require me to see another doctor being we would be moving three plus hours away. I continued to have pain in my right flank, he continued to ignore it, every now and then he'd do some type of x-ray but tell me it was normal no blockage, this went on from mid-winter of 1998 until spring of that year, he finally agreed that something "might be wrong" and so I had one of many nephrostomy tubes put in through my back straight into the kidney, wow the pain is gone, except for the soreness from the tube. He says he plans to leave the tube in for a few weeks to give me pain relief, wow thought I didn't have any pain in his eyes, interesting to say the least!! So the tube is in for about 4 to 5 weeks at least, he then says he plans to "take a look" through the tube into the kidney and ureter in the OR just to prove there is no scarring and that I'm not truly hurting. I go to the OR and admitted over night because he had put a much larger tube in, in the OR (never could get a reason for that out of him)post-op I began to wake up and hurt and ask for pain meds, I'm told no I don't have anything ordered except Phenergan 12.5 mg IM every 4 to 6 hours. Oh man I hurt like hell, the nurse (who most of were my friends)called him numerous times to tell him my BP was out of the roof and they felt it was from being in pain, still no pain meds. Nice guy huh? The next day he comes in and screams at me for "bitching and asking for pain meds" I tried to tell him I never asked them to call him, he didn't believe me, too bad ass!! He then tells me to sit up and he rips the tube from my back and says OK call Dave you can go home. So through tears I call my husband and tell him what's going on since he left that AM to go to the office. He calls my doctor and tells him I'm really hurting and this can't be normal, he tells me husband "he isn't giving me anything that I'm too used to pain meds and my toloracne is way too low and it would only make me worse", yeah right!! We are told he found nothing to be causing my pain and that the only reason he can come up with is I'm addicted to pain meds and that's why I'm hurting deal, my husband tells him the deal about me being offered scripts of pain meds from other doctors but I've refused them, still says no. I finally recover from that mess and it's getting close to time for us to move, I begin thinking OK a new place, a new doctor will help find out what is going on and make stop thinking I'm nuts. Fast forward to August of 1997, we are moving and I begin feeling sick, infection sick, I have a 104 temp, so I go to the ER. I'm admitted with sepsis. The first thing they do is start an IV, then give pain meds and the a CT scan, wow what do you know I've got a huge blockage in my right kidney along with a nice abess. The new doctor is great but I don't complain much about my old doctor because you how doctors stick up for each other, well not this guy he bitched about my old doctor and said he needed to be stopped numerous times. He finally requests me old records, well guess who wouldn't give up my records??? You guessed correctly if you said my old doctor!! So they request just my x-ray reports from the hospital, and what do you know, I've had an obstruction every single time I had any x-ray in the past 6 plus months!!!! So I'm not crazy, (well the jury i still out on that one) I'm hurting for a reason and now my right kidney is basically dead and needs to be removed!! Great!! Thanks MPD, you ass!!! My new doctor wants me to recover some from the sepsis before any more surgery if that's possible, which ended up being so, he told he me he had no doubt that my pain was extremely horrible and provided me with pain meds and asked often if I needed refills, nice guy!! He also told me that from the x-ray reports he had gone over the best he could tell was that my kidney had been blocked on and off for over a year and totally blocked for at least six months. A few months later I had my kidney removed and began to do much better but continue to have massive infections!! But had great medical care the entire 18 months I was followed by that doctor. I was followed by him for only 18 months because my husband left the company he was transferred with and we moved again. Much to my surprise I found another great doctor more than willing to try to help me. He tried to revise my stoma/bladder twice it never worked it still leaks and I still have tons of infections and all of that crap!! Once again we move after about nine years. I spent many weeks in the hospital over that nine year period of time but having a great doctor seems to make things not so bad!!! We've been here a year and much to my surprise I found a wonderful doctor here, after going to see an ass first and leaving him sitting in the exam room, after I walked out but not before telling him I thought he was an ass!!!! During our year I've had many infections but again having a great doctor seems to make things much easier to deal with or so I tend to think!! There's some stuff I have left out during the nine year period of time before we moved here but I'll get into that another time. That was where and when I was developed SVC syndrome from blood clots and had a few clots in my lungs. If you haven't gotten either sick or hearing me bitch or just plain too bored to keep reading I thank you for listening, it's heart breaking and refreshing at the same time to get it out. This is the first time I've ever written it out, it feels odd, but needed to be let out!! There is some stuff going on with my neo-bladder that may cause me to have to have it removed and be faced with wearing a bag forever more, I don't like that idea much, but such us life you know? I've done many other things I said I'd never do so this too may be one of those too, only time will tell. Thanks again for all of your support. Feel free to ask any questions, I'll do my best to give you answers. When I get over this post I'll fill you all in on what's going on that could cause me to have my "fake (as I like to call it)bladder removed, but that might be a few days from now, gotta have a few happy posts after these last two downers!!! Good news flash I did get a phone call from our son, he is OK or as OK as he can be in a war zone, it was fab to hear his voice!!!!! He said they were extremely busy and he didn't know how long he'd be out on this mission he's been on for the last just about month. He's very much in "the danger zone" 24/7 right now, which anything can happen any where over there. He's not at his "normal" base camp, he's out in the middle of no where, which is why we haven't heard from him much. When he's at this normal base camp he has Internet and phones anytime he chooses to use them. We normally talk on MSN or something like that, and that has gotten me very spoiled talking to him daily!! Please think safe thoughts for him, if you are the praying type, an extra pray sure won't hurt him or his partner Uli, a 3 year German Sheppard!! Man's best friend huh??? Also good news in the fact that our daughter has gotten a "real job" it's only part time but she is going to nursing school so part time is good!! She's a paramedic right now. We are thrilled with her new job, it has to pay better than a life guard and swim coach, which is what she's been working as while in School!! So life is good!!!!! It's about to get really good too, I'm leaving in about 12 days to spend two weeks in NJ visiting my sisters and some other family!!!! I can't wait I'm ready for a vacation and not at "club med" which is what I call the hospital!! Oh yeah since I'm not really the type to "sue" someone I never did anything about that doctor's fuck ups, aren't I really nice????? Although I have heard through friends that still work there that he was indeed relieved when the seven year time period was up and I no longer had the "right to sue him"!! But knowing that was he was fearful was enough for me, money would be nice but it's not going to make me well so why bother, that's all I really would like. OK, now I'm just rambling so I'll close, thanks again for listening!!!! Have a great week and I have some pretty cool photos to share of my fur-babies enjoying the spring weather here!!!!
Marie

How I lost my bladder and right kidney!

OK, people this is gonna be a long one I hope to cover it all in one sitting but can't promise you that will happen. Get yourself some tea, a stiff drink, wine or whatever your drink of choice maybe, here goes!!! It was Febraury 23, 1996, I worked an eight hour evening shift, then I was begged to work the night eight hour shift from 11 PM to 7 AM. Had never in my life ever had a UTI, well as that night shift progressed I knew exactly what was happening, I was experiecing my very first UTI and I so didn't like it much!!!!! I got someone in the lab to run a UA for me and yup I was correct, so I was then off to find a physican to write me a script. Within hours of taking the first dose I began to feel much better! Great I got my first UTI and it was on it's way to being history, no issues, so I thought until a week later it was back and it was back with lots of blood, pain and tons of hell!!! So I call a urologist who just happened to be a good friend of ours. My husband and he scuba dove together and often went boating. Life seemed wonderful!! He said I just hadn't taken a long enough course of antibotics and that I'd be fine. Days passed and I wasn't fine at all, I couldn't pee and if I could it was pure blood, and lots of pain. Fever and other sucky sytomps that go with pylonephritis were making me feel horrible full force. So I'm admitted to the hospital and find I have a small kidney stone and that my urine culture grows MRSA, fucking great!! I get that horrible drug vancomycin and think I'm on my way to living life as before. Boy, if only I'd known how wrong I was at that time!! About a week after discharge all of the same crap is back, this time it's treated out patient. Time goes on and I have numerous infection after infection and am bleeding like crazy. So it's time for a cystoscopy in the operating room, "just in case". That was the first of many, many bladder resections and right urteral stent placements. This goes on from about April until September, I'd have the stent removed and think life was going back to "normal", not happening to say the least. By September I'd had bladder resections and stents approximately every two weeks, followed by hospital admissions a day or two following the stent removals and bladder recections. Let me back up a bit, I NEVER knew I was even having bladder resections until mid-November. In Septmeber I have a huge obstruction and he had a very hard time doing the bladder resection that time, so he calls my husband at home on a Saturnday morning to tell him that he really feels I have bladder cancer and he's about to make rounds and to tell me the same, nice!! So I freak for a few days until the path report comes back and says no cancer but no idea what's causing all of this crap. Nice, between that time and mid-Novemeber I had bladder resections and stent placements and removals approiximaltely every two weeks. During a hospital admission in November he tells me he has no bladder left to resect and that my bladder was about the size of a plum and it needed to come out, no other way to stop the bleeding. Oh great, wonderful I tell him I didn't even know I was having bladder resections to begin with, his reply, "oh I didn't want you to worry so I never told you", nice huh?? Guess that explains why I'd feel so dam bad after "just" a stent placement! So he informs I need to have my bladder removed and that he didn't plan to send me to a large teaching hospital because no one could "make a neo-bladder better than me". I should have freaking ran, and ran fast at that point but didn't!!!!!!!!! January comes and I have my surgery, all goes well I'm told. He was able to reconnect my bladder neck to the neo-bladder so I'd pee like a normal person before long, great!! I recover and am well for a while, no more bleeding but lots of right flank pain, lots of pain! As time goes on I become having issues with being incontinet, so I have a sort of bladder tack surgery, doesn't work, we go back and do it again, worse I'm almost never dry!! This brings us to August 1996, his "fix" for the leakage is to tie off the bladder neck and pull the pouch up to my umbilicus and make a catherizable stoma for me to empty the pouch. Great! Should have known it wasn't going to be good, when I end up with a puctured lung because he had to be the one to put my central line in, wouldn't allow someone more experieced, no way he could do everything BETTER than everyone else, remember? NOT!!! So during this hospital admission I not only have to deal with a body altering surgery, now I have to deal with chest tubes because my doctor was a hard headed ass and had to do it all himself!!! Great!!! So I slowly progress and am able to discharged. I am sent home with a cathiter in my bladder having the suprapubic tube removed during my hospital stay. It's a very slow recovering but determinded to recover and be a mom to my young kids keep me going as did a wonderful husband. OK, this harder emtionally than I planned on so I'm gonna stop here and post this much and then come back either later tonight or tomorrow and post the rest, sorry I just need to get a grip, casue the rest sucks even more than the crap so far. All I can say is FUCK YOU, you dumbass MPD!!!!! If you didn't guess those are my uroligsts intals. fucker is all I can say. OK I'll be back when my heart isn't racing and my eyes aren't tearing so badly, I hate this it sucks it still makes me feel this way all these years later, I swear that fucker shouldn't have a hold on my life!!! Sorry about the cursing but that's just me!!!!
Marie