I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: MooseMom on November 02, 2011, 08:59:23 AM
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I had a colonoscopy, my first and only, 5 years ago. I had it simply because I was at that age, and my neph felt that I should play it safe and have it done. OK, fair enough. Had it done, no cancer.
FF several months; I had my usual neph appt and was waiting in the exam room to see the neph. In the meantime, the practice nurse (who I did not know) came in and told me she was still waiting for the go-ahead from my insurance company.
Me: What are you talking about?
Her: Your gastroenterologist wants to refer you for some tests.
Me: What are you talking about? I haven't heard a thing about this.
Her: Well, you'd have to go into Chicago for this test...
Me: What are you talking about?
After the appt, I sent a letter to my neph saying that since no one had said anything to me about any problems found during my colonoscopy, I refused to subject myself to any fancy pants test. Never heard a word about it again.
FF again to last year. In getting on the list, I had to chase my gastroenterologist and ask him to send all relevant info to the transplant center. They did, and I was cleared for the list.
FF to this year, and the transplant people want the gastro's "recommendation" to see if I need to repeat the procedure, as it has been 5 years. I've spent the last SIX WEEKS trying to get an answer, but yesterday I got a call from them saying that they sent this info to the transplant center a year ago. I asked them to please send me a hard copy because the tx people can't find any piece of paper that I send them. I have my tx appt next week, so it was sort of urgent.
I got said info in the mail yesterday, and as plain as day, it shows the date as being last year and it shows that the gastro recommends retesting in 5 years AT THE EARLIEST.
So, today I get a call from the tx coord. who said she'd just talked to gastro's office who said that the tx people need to make the decision. TX coordinator said gastro needs to make the decision. So gastro (well, his nurse) recommended I have it done this year.
I am furious. I bet none of these people have had a colonoscopy before, but they don't think twice about subjecting a sick person to it. The procedure itself is no biggie, but there's the special pre-op prep that I have to have special provisions for because of the phosphorus used in the stuff you have to drink. And the prep takes a day. And then there are more needles involved and the anesthetic scares me stupid and always makes me sick. I tell people about this, but I still get nauseous. The last time post-op, my bp dropped so low I passed out. And then there's the gas...it's so painful.
So, I'm going to have to get a referral just to talk to the gastro, and when I DO talk to him, I'm going to ask him to look me in the eye and convince me that putting me through this is clinically necessary. I can't get past the feeling that he's thinking that here is a chance to make a quick buck, and I can't refuse because then I'd just be chucked off the list. I feel coerced and manipulated. And when I think about the current debate in this country about how to deal with the ever rising cost of health care, I can't help but wonder if this sort of thing is what drives those costs up higher and higher.
I am the most compliant patient on the planet. In the seven years I've been doing this pre-dialysis production, I've taken every pill, made every appointment, had every blood test ever required of me. I've made sure I've understood the clinical reasoning behind everything. But this "recommendation" is making me wonder.
If anyone has a thought about this, I'd appreciate hearing about it. Is there something I'm missing? Is there something that I have not considered? Thank you.
I'm really angry. What makes it worse is that my husband has the worst bowels on earth, but he won't get tested. He gets to deny and run away, ignoring the fact that everything he eats makes him run to the bathroom. But I am the one who has to be subjected to this test. I am soooo not happy.
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It sounds awful! I found the recommended guidelines here: http://health.msn.com/health-topics/cancer/how-often-should-i-have-a-colonoscopy
It says some of the stuff is recommended every 5 years, but a full colonoscopy is at 10 years. They recommend a Sigmoidoscopy every 5 years.
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Oh, Deanne, thank you SO much for posting this link. I knew that there were other screening methods, but it hadn't occurred to me that maybe I could ask about them. I really would like to avoid sedation, and I just feel that with every procedure I'm required to undergo, the risk goes up for complications. If I could avoid both sedation and a scope through, say, a CT "virtual" colonoscopy, that would suit me just fine. Thanks again! :thx;
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Sorry to hear it MM ..... I had my very first colonscopy this year (happy, happy) in preparation for getting onto the transplant list. I'm finishing up a final few requirements and expect to get the all clear by December to be added.
When I got the colonscopy in June 2011, I was told I wouldn't need to have it done for another 10 years. (Luckily I didn't have any issues like you did ....drinking that crap was the worst part. The actual procedure, I woke up after they put me under and was like "You're done ???" ....didn't have ANY discomfort afterwards ..........Whew.)
My transplant coordinator has been pretty clear on what she needs from me still to get me on the list. I expect she'll keep me equally appraised as time goes along and I need to 'keep up' on whatever bugaboos I'll need to remain active on the list once I'm on.
I can appreciate what you're feeling and hope you're able to do whatever is necessary to keep your place on that precious list. It's awesome that you're already accumulating your time and are that much closer to receiving the gift !
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I sounds like a money grab to me.
I had an awful time with my first colonoscopy...wrong prep given and what a nightmare. A small tear in my bowel and hospitalization and the beginning of the real decline in my transplant function. My family doc no longer refers to that person.
I was told all is well for 10 years and also that due to this experience we might be doing the alternate procedure next time.
I hope you get this all resolved MM.
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Do you have a personal or family history of colon cancer or other GI issues? I have had ulcerative colitis for over 20 years and my mom's older sister had colon cancer which is now in remission.....what does this mean for me? YEARLY colonoscopies for the rest of my life. :banghead;
If you do have to go through with the colonoscopy, I can write out my personal tips for taking the prep. I've almost gotten it down to a science since I've had five colonscopies since I was first diagnosed with the UC.
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Thanks guys. I just met with my GP and we went over the tests that I still need done, colonoscopy being one of them. If I wasn't scared enough before, I am now!
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Here's the thing...3 years ago, I had abdominal surgery that was successful except for the fact that it took me waaaaay too long to awaken from the anesthesia. The doctors were really starting to panic, and the anesthesiologist said that in 33 years of experience, she'd never seen anything like it. I ended up in ICU for two nights. I could NOT open my eyes...it was very annoying.
I am 100% certain that that episode left me aphasic to some degree. It was as if a light had been switched off. Since that time, I have difficulty finding words when I speak; I can feel my brain flipping through verbal files in a desperate attempt to find the appropriate word. It is very frustrating. I could chalk it up to CKD, but the timing of its onset makes me believe that my brain was affected by that anesthesia. Even my husband has noticed it. It makes me furious, and it makes me feel stupid and frustrated. I have so little energy on my best days, and on the rest of the days, talking is too enervating, so many days I am completely silent (hard to believe, I know).
Since then, I have had to have anesthesia for the removal of my gallbladder and the creation of my fistula, and both times, the anesthesia has caused more problems for me than the procedures themselves. After my gallbladder removal, I couldn't stop throwing up despite them having given me just about every anti-emetic in their arsenal. As I was being wheeled out into the lobby toward the exit and into the car, I was still heaving. I'm sure everyone looked at me and that, "Christ, why are they letting that woman leave?" There was serious discussion about admitting me...after a simple day surgery procedure!
So, there's that. There is also my concern that with each procedure, there is always a small risk that something will go wrong. I have worked so hard for seven years now to adhere to all the renal rules and take care of myself, and I hate the idea of subjecting myself to more risk if I don't really have to. I worry that my luck may one day run out that I won't die of ESRD but, rather, of some horrible side effect to the anesthesia.
If it's so damned important for me to have this done, why did neither the tx people nor the gastro want to make the call? It feels like someone just flipped a coin without considering the effects this will have on me, the poor sod who has CKD.
So, I will push for one of those virtual colonoscopy thingies, and if they do find something they want to remove, then fine.
My mother did have a polyp removed that had the very beginnings of a malignancy, but she was in her 70s. I don't know if this qualifies as having a "family history" of colon cancer. None of my medical people are even talking about "family history" issues.
CebuShan, I don't want you to be frightened. If you've never had one before, it's a good idea to have one to be on the safe side. If I had never had one and my tx people wanted me to have one, I'd do it with no questions asked. It's just that no one seems all that bothered about me having this done, but the gastro probably wants to go to Bermuda this winter and my insurance company gets to pay for it. Most people don't have the problems with the anesthesia that I do, and that's really the genesis of my concern.
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Wow. Very sorry for your problems with anesthia. I totally get it and can appreciate your fears with your detailed (scary) description. By all means, FIGHT it if you can and find a better way if possible to get them the result they need to keep you on that list.
You made me laugh with ..... so many days I am completely silent (hard to believe, I know) .....
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Reason #3 why I'm not on the list and have decided that dialysis is it for me. ALL the bullshit they put you through just to get money for yet another test. Can't they do the poop smear test? If there is blood or abnormal cells then yes..... otherwise no. They wanted me to do a heartcath so I did and the next year they wanted another one and that is when I dropped off the list. ENOUGH already you greedy bastards and then you want to give the donor NOTHING.
Oh, don't get me started! :boxing; Try to be nice about it showing them that protocal is every 10 years.... :angel;
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:rofl; Rerun, believe me, this conundrum made me think of you right off the bat! You are sooooo right! You've been on my mind for days!
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I don't want anyone starting on me about this, but I have Never had a Butt test! Im closer to 60 than 50, and don't plan on it in the future! But Im not one with this disease either! I bet this is so frustrating for you all, I can only imagine!
lmunch
:kickstart;
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I feel so lucky not to have had any bad experiences with my first (to date) colonoscopy. Whew. Now drinking that prep crap .... THAT was no picnic, but beyond that .... for me it was a breeze. I'm not on the list yet, but once I am (December 2011 should be my time), I will jump through whatever hoops they want me to in order to stay there !!!
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I feel so lucky not to have had any bad experiences with my first (to date) colonoscopy. Whew. Now drinking that prep crap .... THAT was no picnic, but beyond that .... for me it was a breeze. I'm not on the list yet, but once I am (December 2011 should be my time), I will jump through whatever hoops they want me to in order to stay there !!!
I've done everything asked of me so that I can stay on the list, but at the same time, I do ask for my medical team to remember that I am sick, otherwise I would not be on the kidney transplant waiting list, and that there is a patient burden for each procedure they require. And I am also very mindful of cost.
Dialysis is a racket, and that makes me suspicious of all medical practices. I don't wish to be cynical, but it does make me question the motives of some of these people. But more than anything, being subjected to anesthesia if it is not absolutely necessary frightens me. I just don't think it is smart.
What do you have left to do to get on the list? Good luck!
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MM, I think you should refuse. Be nice about it, but I would stand your ground. Perhaps the gastroenterologist will back you.
However, most people are not put under general for a colonoscopy. I was because I demanded it, but most people get Versed with a painkiller (opioid). If you make it about general anaesthesia, I would imagine they will just tell you that they'll do it without. Your argument that you should not be subjected to this because PATIENT PREFERENCES AND FEELINGS MATTER!!! and that it is hardly necessary since you just had one should be more than enough to carry the day.
I also have a degree of what you are describing, with having to search for words and not being able to come up with the proper one. It's annoying. I cannot point to an inciting incident for that - maybe the transplant. I used to be much quicker on the draw verbally, and it is incredibly frustrating. That being said, I do know a person here with pretty severe aphasia, and I know I have it so easy compared to him. For me, I think it's aging and a bit of lingering trauma that has slowed my mental function down a touch. I also don't absorb and retain information as easily as I used to. No fun.
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That's true, cariad, that they don't use general anesthetic for a colonoscopy, but when I had mine done, in recovery they tried to get me to stand up, and my bp plummeted. I was in recovery forever. And that was just with a twilight sort of anesthesia. My renal function was better 5 years ago than it is now. I feel more fragile than I did back then, and it just all feels risky to me. But you are right that I should state my preferences, and I certainly will. I will voice my concerns to the gastro and see what we can come up with. If he can give me a clinical reason for me to have this done, I will consider it, but no one has been able to do that yet.
Interesting what you have to say about your "aphasia". "Lingering trauma" is a nice way of putting what you've been through! :cuddle;
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I don't want anyone starting on me about this, but I have Never had a Butt test! Im closer to 60 than 50, and don't plan on it in the future! But Im not one with this disease either! I bet this is so frustrating for you all, I can only imagine!
lmunch
:kickstart;
We all make our own decisions of course and I asked to have my first one done when I turned 5o. ESRD isn't the reason for having a colonoscopy, colon cancer is. Having two friends die of it, one at 34 and one at 55 and another survive it with a colostomy bag at 66 (colonoscopy saved his life) all contributed to my proactive stance...I also see my dentist twice a year and my gynecologist yearly etc. I'm not a hypochondriac in the slightest but I try to look after this body as if it were a car, one that I'd like to see become an antique. :flower;
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MM, sounds like you may have had the Versed/opioid combination that they offered me. Versed is an amnesiac. I don't know why anyone would accept it if they could get away with not taking it. When I told them that I do not react well to opioids, the nurse came in and said "we're going to do it with just the Versed". I am not a paranoid person, but an amnesiac with no painkiller sounded to me like an invitation to years of costly therapy. I could not BELIEVE that was their solution and flatly, angrily refused.
The ONLY reason I had it done was because the surgeon wanted it done and he went to the trouble of telling me that he had had the procedure at age 41, so he wasn't asking me to do anything that he hasn't endured himself. (Then he added 'Well, I guess I've never had a mammogram....') The mammogram annoyed me as well. I had one due to a medical scare and when that ordeal was put behind me, I had been told specifically that I did not need another one for a few years, but again, my situation was different in that I was trying to build a reputation as fully cooperative. It was unlikely that I would have refused to have any test the wonderboy requested. Both appointments they asked me why I was even there, and I told them and added "I don't have cancer! This is just a formality."
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Even before I got listed, I had yearly paps and mammos. Like monrein, I believe in being pro-active. I had my first colonscopy before being listed because I was at that age where it is recommended, so I did it. I understand and appreciate the importance of it, but I do question the necessity if there is no clinical reason. The fact that neither my GP nor the tx people nor the gastro wanted to make the call makes me wonder if it is really necessary to repeat it at this time. I don't question the need to have it done at all, I just question the need to have it done NOW, and again, it is the after effects that concern me.
OOOh cariad, the idea of having just an amnesiac is the stuff of nightmares.
Obviously I need to have a good discussion about this with the gastro. But since I have an HMO, I have to get a referral to even get to talk to the guy. ::)
Speaking of referrals, I have my first annual tx appt on Monday the 7th. I got a call from the center today ...TODAY, ie just one working day before my appt...telling me that oh, they see that I am on an HMO and was I aware that I needed a referral for the appt on Monday? What if I had said "no"? Boy, these people are really not up to speed. I mean, my listing date is July, and here it is November before they could even see me. ::)
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I can't see the medical reason for this new one they're suggesting for you either MM.
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My reason for not having it done is not because I fear the procedure, but the possible results. Not that Im afraid of results cause I believe Im fine, but one never knows, right? But I can't handle more health issues right now. I do have mammograms once a year and they really do not bother me, but have heard "horror" stories about them. Everything has been fine with them!
I do believe that I am extremly healthy and Blessed! For that Iam grateful, not boastful by any means! I have always felt, that when I die, it will be by my motorcycle, that I enjoy beyond addiction!!! I suppose it is a good thing, in some respects, that I don't get to ride that much!
lmunchkin
:kickstart;
But I do understand what Monrien is saying! It really is a personal decision.