I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: escobarak on December 12, 2008, 02:01:33 PM
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I would like to consider myself as one of the more optimistic kinds of persons. But I think realisticly when we all sit with ourselves within our most private thoughts, we have a moment or two where we think to ourselves, "Had this or that not gone this or that way, just for that split second of a moment. Just that one decision. To drive when its stormy, or forget to say I love you. I would like to hear some stories that fit within this subject.
Edited: Moved topic to Dialysis: General Discussion - okarol/admin
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and I know that maybe it's they aren't 'bad decisions'. But I used that word because people are taken so suddenly from us, and I know that that is life, however I am a firm believer in wishing for a wand if I had one. Not just to fix things, but to keep people we love here with us longer. I also realize though, that these things do occur for an overall intended purpose, and to help us grow in different ways.
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I try hard not to dwell on what has happend - because is has happened and I can't undo it however much I wish I could. I just get on with what life throws at me (although most days I just wish it would give me a break) and get on as best I can. 'What ifs' only bring me down, make my mind go round in circles and achieve nothing, so I don't go there anymore. Hindsight is a marvelous thing :)
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I believe that things happen the way they are meant to. Sometimes we don't know or understand why, things just are.
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Getting ESRD and having a leg amputated has brought me to a point that everything else that happens thru daily life are just minor annoyances...Boxman
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Kidney disease has made me change a lot. I don't say "what if" anymore. I appreciate the day I am living and the people around me. No more regrets. Now in my quiet moments I think "did I remember to tell someone how special they are to me" or "thank you". Escobarak, this is a good thread. :2thumbsup;
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I try to think that even bad things have some good come from them. I don't have Renal Failure, but "it's always something". I've had some Horrible[/i] things happen in my life. Horrible, if I didn't mention... But, to look back, things happened a certain way because of them\it. I have to look at whatever good came from those things. :cuddle;
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I do know if I had not gone back to a kidney site and hunted for the funny sounding name of a site called IHateDialysis.com I would not have met the nice and wonderful friends I have found here. But for the click of a mouse!
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I truly believe that if I had not ignored everyone when they told me I had high blood pressure, and if I had not allowed myself to become fat, I would not be on dialysis today. Not one person ever told me that untreated high blood pressure could lead to kidney failure. Anyhoo, too late to look back; I just keep looking forward.
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I try to think that even bad things have some good come from them. I don't have Renal Failure, but "it's always something". I've had some Horrible[/i] things happen in my life. Horrible, if I didn't mention... But, to look back, things happened a certain way because of them\it. I have to look at whatever good came from those things. :cuddle;
I know what you mean. Well, even though you may not have renal failure, I would welcome a story or two from you, especially since I'd be willing to bet that you have some great ones to tell. :cuddle;
You know when you said "it's always something."? I can relate in the sense that just when everything seems to be going steady, and feeling good, and you feel like you might be happy, the universe says "We gotta get him/her! >:D" God, I hate that feeling.
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Kidney disease has made me change a lot. I don't say "what if" anymore. I appreciate the day I am living and the people around me. No more regrets. Now in my quiet moments I think "did I remember to tell someone how special they are to me" or "thank you". Escobarak, this is a good thread. :2thumbsup;
Thanks, Paris. I agree with you. Since my diagnosis a few months ago, I constantly think those same thoughts, and whenever I get pissed about something, It's easier to find a way to get over it and make peace. I guess sickness can really be a different kind of healing. :)
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I used to be a Hospice Nurse, for a long time. I have watched a lot of people die. Some stories... :secret; Anyway, I think any chronic or terminal illness is both a blessing and a burden. The burden is of course the disease. The blessing is that you see everything and everyone in a different light, and you quickly learn to say things you wouldn't have said to people. You get over things quicker. I always have to look, sometimes really hard, for "what good will come from this.". Whatever is going on. And there is always something good. :)
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Anyway, I think any chronic or terminal illness is both a blessing and a burden. The burden is of course the disease. The blessing is that you see everything and everyone in a different light
I agree with that...Boxman
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I told my brother a few months ago that I kind of feel lucky because I know what my disease is and how to live with it. Now, I can move forward and not waste one day. There is something each day to give thanks for - well, somedays you have to really search! It is a hard wake up call and I hate it. But, it brought me here and that is a huge blessing for me! You do see things differently.
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That's a good point, Paris. At least with ESRD we have options other than "waiting" and "death".
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I try to think that even bad things have some good come from them. I don't have Renal Failure, but "it's always something". I've had some Horrible[/i] things happen in my life. Horrible, if I didn't mention... But, to look back, things happened a certain way because of them\it. I have to look at whatever good came from those things. :cuddle;
I know what you mean. Well, even though you may not have renal failure, I would welcome a story or two from you, especially since I'd be willing to bet that you have some great ones to tell. :cuddle;
You know when you said "it's always something."? I can relate in the sense that just when everything seems to be going steady, and feeling good, and you feel like you might be happy, the universe says "We gotta get him/her! >:D" God, I hate that feeling.
Kidney disease has made me change a lot. I don't say "what if" anymore. I appreciate the day I am living and the people around me. No more regrets. Now in my quiet moments I think "did I remember to tell someone how special they are to me" or "thank you". Escobarak, this is a good thread. :2thumbsup;
Thanks, Paris. I agree with you. Since my diagnosis a few months ago, I constantly think those same thoughts, and whenever I get pissed about something, It's easier to find a way to get over it and make peace. I guess sickness can really be a different kind of healing. :)
1>yeah i've gotten that "universe out to get me" feeling alot...it comes and goes....not good...but i also know that the good things happen too...i mean all i gotta do is think of my niece and my nephew and i know that i've got good stuff too....
2>i think more about that kind of stuff too....and i try and let the people i love and care about know how i feel about them. because you never know when it's gonna be your turn. or there's. i know when dan (my brother) died, i know he knew how i felt but we had argued and i didin't see him again before he died....that was really hard for me to deal with....it was easier on me (well i say easier but i guess better would be the best word, or i don't know) when my mom passed last year because the last thing i told her was i love her... if you get my meaning....i can't seem to get the wording right. it's still a hard thing...but it was better because i knew the last thing she heard from me was of love...and not the argument i had with dan. so i think it's less guilt more than easier or whatever. better to leave someone with good words...than to storm out fighting...because you just never know
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We all have our issues to deal with. Having a lot of "woulda, shoulda, coulda's" only weighs on the mind and saddens the heart. Find the brighter side of everything. Smile often. Laugh with your entire soul. Greet each day as a new challenge and face it. A positive attitude is the greatest healing force ever known.
I BELIEVE! :2thumbsup;
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We all have our issues to deal with. Having a lot of "woulda, shoulda, coulda's" only weighs on the mind and saddens the heart. Find the brighter side of everything. Smile often. Laugh with your entire soul. Greet each day as a new challenge and face it. A positive attitude is the greatest healing force ever known.
I BELIEVE! :2thumbsup;
And that's why I love a sense of humor. As much stuff I have had, can't look past, just move forward. Yes I made mistakes when I was younger and at the time I had fun and didn't think about the consequences, but I didn't have the knowledge at the time. Technology didn't exist to look it up, nor did small town libraries have all the information. I may not like my situation, but I enjoy having fun when I can with it.
A sense of humor can go a long way.
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I heard this once and it stuck with me about wondering about the decisions we've made: "regrets are only mistakes we didn't learn a lesson from" and I think it fits very well. We can't change the past but as long as we can learn from it we'll be that much wiser in the future.
I was born with my kidney disease and I continually struggle with the feeling that the universe is out to get me, but if I dwell on the thought that life is unfair to me and feel sorry for myself it gets me nowhere but to a bad, dark place. I can't change my genetics, I can't change the past, so whenever I find myself about to throw myself a pity party I try to remember not to let things I can't change ruin the present! That's also a quote from my boyfriend, who helps keep me focused and snaps me back to the present when I feel down.
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i had this question for a while. if we did the right thing for Nanay, to put her on dialysis, is dialysis worth it? after we'eve seen the terrible things she had gone through with dialysis. sometimes, i would ask myself, maybe she could have been better and prolonged her kidney function instead of having dialysis. But deep in my heart, i know we did the right thing, prolonging her life, having her much more.
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You know what's interesting is that I often think have I made the right decision? with having a failed transplant and nowhaving dialysis and having to deal with acceptance in my life style, sometimes dealing with denial by living a dream.... the reality is that i must just learn to live with "things happen" what happened to me is my destiny, I would love to change it but hey i can't... things have happened to me for a reason, I often remember my previous life; drinking, partying travelling and now having to life with limits and out of bounds areas in my life is very hard to accept and change... but more and more each day and with positive thoughts I am more and more accepting that my life has changed and the decisions that I am having to make now and forever are real and this is now my life, living with dialysis and one day if I can get another kidney and it works that this is my life.....
I have noticed that even my personally has changed towards to people for the better, I listen and try and understand people more and this a quality that I really like about myself and this has definitely come about since my transplant and dailysis situation...
Excellent topic for discussion escobarak and IHD
H :cheer:
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Hilrose, if I may ask what caused your kidney to reject? That is so terrifying to me. I just hit 8 weeks post transplant on 12/31/08 and rejection is so scary. My transplant doctor said that medications are so good these days, that unless I am noncompliant with meds or there is some sort of trauma to the kidney ie. accident, injury, untreated infection, etc., that there really should be no reason this kidney should reject. I was pre-dialysis and received a healthy living kidney. What are your thoughts?
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Kelly, I had my transplant two weeks before you had yours and I have the same concern. I was pre-dialysis and received a cadaver kidney *bless the family of this person*. Somewhere in the back of my mind I thought everything would be perfect, but now I realize that it's just another road in my journey. And we never know where the forks are going to pop up. I try to take one day at a time and face things as they come. Having rejection issues from the beginning makes it even worse. I am controlled now with the meds, but who knows when a new issue will arise. Guess we just keep on keeping on and consider ourselves VERY lucky to have this chance. My children ask...."If something goes wrong with this one, will you go for transplant again?" HELL YES! I have a lot of stubborn in me!
:)
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Kelly and Vicki, that worry goes away for the most part over time. I use to think about it a lot, but now it is not at the forefront of my concerns.
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It is only human nature to say "what if" when something bad happens but you should also think about the "what if" when something good happens. What if I hadn't gone shopping one day to a shopping centre I don't usually go to and I hadn't seen the cutest puppy I had ever seen in the pet shop. I wouldn't now have the love and loyalty I have from that little bundle. Like Kit said, if I hadn't stumbled over IHD on the internet what sort of mindset would I be in now going into dialysis - certainly not as prepared as I am. Like nursewrachet said. I also have had some really horrible things happen in my life. I often think, what if I had never gone into the media. I would not have had to endure the humiliation of what the competition media stable did to me in a full page story in their newspaper purely because they couldn't hack the competition. But what am I doing now. Starting my own media company and publishing my own publications. I couldn't have even thought of doing that without the experience I acquired in their newsrooms and if I didn't have my kidney problem I wouldn't even be doing it. Because of this disease I have the best "What have I got to lose" attitude and I am only now really giving life a go by addressing overwhelming obstacles and pushing forward. I think I am going to do a lot more with my life with this disease than I would have done without it. And let's face it, it is one of the better diseases to have. If I had terminal cancer I would be saying what if I just had another six years instead of six months. Thank God for dialysis. It gives me the years and not the months. What if there was no dialysis machines? There are far more positive "what ifs" than negative. What if the glass wasn't half empty? Guess what? It would be half full! This is a great topic and that is :twocents; worth. xx
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Hilrose, if I may ask what caused your kidney to reject? That is so terrifying to me. I just hit 8 weeks post transplant on 12/31/08 and rejection is so scary. My transplant doctor said that medications are so good these days, that unless I am noncompliant with meds or there is some sort of trauma to the kidney ie. accident, injury, untreated infection, etc., that there really should be no reason this kidney should reject. I was pre-dialysis and received a healthy living kidney. What are your thoughts?
I think it may be a mixture of things, I noticed on dialysis, my temperature was high for more than a week and during the day time I kept on getting cold and hot, my kidney area was experiencing sharp pains and felt like it was hanging and I only pass a little urine, and whilst passing urine I would be left with a stinging sensation and feeling really peculiar throughout the day. My blood count dropped between 7-8, I had the desire to eat chalk, smell petrol, smell nail varnish and this went on forabout 6 weeks, I was put on tabs and IV antibiotics, and nothing worked. Then the doctor told me they cannot treat the infection or identify where it was, it must be rejection, my neph put me on steroids and increased my immune suppressant drugs ( I was on a very low dose 1mg) which is now increased to 1mg twice a day now, since starting the steroids and increase of drugs, I am feeling better. I would agree with your transplant doctor regarding the meds, if you take them as prescribed, you shouldn't have any problem, I think because my kidney has never worked, a report on a scan shows that it has shrunk or looks shriveled and I have a mass of fluid surrounding the kidney, I may have picked up an infection in this area or bladder, I don't really now, I am due a MRI scan on 20th of this month and hopefully this will reveal a lot more information. I know it sounds weird, but I'm looking forward to my kidney being removed, I will then be of the immune suppressant drugs and steroids, they have caused my blood sugars to rise, to put on weight, especially my face and stomach, I think I have gout since starting being on these drugs also, I have stomach pains and if all of this due to the meds, then I am happy to have the kidney removed and continue dialysis without the drugs and improve my health until I get a new healthily kidney.
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In my case, ABSOLUTELY!!!
There was ONE bad decision that got me from a formerly healthy guy to kidney failure and dialysis. But it wasn't entirely my decision:
I was starting to get symptoms of an enlarged prostate (weak urination stream, difficulty getting urination started, etc.). Not severe, just annoying. So I went to see a urologist about 18 months ago.
The urologist ordered a prostate biopsy for me, to check for prostate cancer. The biopsy was negative. My urologist's diagnosis: Benign Prostatic Hyperplasia (BPH).
So, the urologist said that as long as I could still urinate after a fashion, I shouldn't worry about it. If it got much worse, he could then put me on medication. And I went home. And I didn't worry about it.
What he and I did NOT know, was that urinary retention from the enlarged prostate was causing urine to back up into my bladder, and then into my kidneys, damaging both. By the time I started experiencing symptoms of kidney failure (fatigue, dizziness, even bone pains), it was too late.
And here I am, on dialysis, on this website.
I'm still angry about it. I have since learned that BPH is known to TRIPLE the risk of kidney failure in otherwise healthy men. I did not know that at the time. And my urologist didn't even mention the possibility of screening me for bladder damage or kidney damage. A simple blood test for BUN and creatinine levels would have confirmed that my kidneys were damaged to at least stage III kidney disease.
As part of my treatment for kidney failure, my nephrologist referred me to another urologist, who did a bladder cystoscopy and confirmed that I had severe urinary retention and that my bladder had been greatly damaged. I wish my previous urologist had bothered to order this test.
BTW, a lawyer I talked to recently thinks I might possibly have a malpractice case against my previous urologist. Other medical authorities say that early treatment of BPH may help prevent these more serious complications like bladder damage and kidney damage. If my BPH had been treated 18 months ago, I might not be on this website today.
Moral of the story: If you start having chronic symptoms that you never had before, and your doctor tells you "Don't worry about it," it might be worthwhile to keep worrying about it, just a little bit--maybe getting a second opinion.
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I am just on the tail end of my third transplant. Every once in a while I think about what I could have done differently to prolong the life of my third kidney. My inability to become a dedicated water drinker is my biggest regret. I love Coke. (had to switch to sprite... damn phosphorus) But I did what I did, I drank what I drank and I am where I am. Reminding myself of mistakes I feel I have made only makes me depressed. They are always there in the back of my head, reminding me to play it straight, and that's where I try to keep them.
-Mike
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I could have not gone to Kaiser the day I did. The docs said another hour or so and I would have been dead. So here I am.