I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: MooseMom on May 25, 2010, 12:01:44 PM
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I don't understand it. As I go through this process of getting ready for D, I look around me here at IHD, and I don't understand why I seem to be so traumatized while most of the rest of you seem so sanguine. There truly must be something wrong with me, and I am hoping that you all will share your secrets. For example, in the past few weeks, there have been posts by people who are just about to have their fistulas created, and everyone seemed to think it was no big deal. I didn't dare post that getting my fistula was the worst day of my life (I didn't want to scare anyone) and that two months on, I hate my fistula with a seething passion because it always feels like there is an electric current running through my arm. It pinches and yelps and buzzes and by the end of the evening after a full day of pinching and yelping and buzzing, it just damn hurts. It's not mature yet, but I can see the roadworks as my blood pathways reconfigure themselves, and I look like something out of Tron. And the chemical stress test I was concerned about? It was even worse than I imagined it to be. I was sick as a dog because they wouldn't let me eat anything for like 9 hours. As a matter of fact, this whole fistula thing has turned out worse that I thought it would be, and you all KNOW how freaked I was about it before the surgery. So, is it just me? Are my perceptions of things just so amplified that it borders on the abnormal? Are these things really no big deal but I somehow make them into a big deal? Or do I just spill my guts with more wild abandon than most people? In the middle of the night when you can't sleep, when there's no one on IHD and everyone in your world is immersed in dreaming, do you ever feel fear or anger that you don't share with anyone else? How much do you tell on IHD? Really, is it just me?
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No, I agree with most of what you are saying. I am a carer for my husband and yes it gets me down, my husband is on a night cycler and the noise and the sight of it , I feel like screaming, this machine is intrusive in my bed room. The tubes that are in my husband are not normal, they should not be there. This is what being on dialysis means. If you hate your fistula, you hate it. I have seen a few and they look bloody awful. I always say every one is not the same, we are all different, we all have different needs, we all feel different pain.
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I always say every one is not the same, we are all different, we all have different needs, we all feel different pain.
I've always thought this was true, but everyone here seems so much more adept than me at just accepting fate and living through it.
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For me well i HATE DIALYSIS.
But knowing that i am so much better off then so many other people (people with incurable cancer-blind people-people who cant walk ect ect ect.) It makes me see things in a broader picture. I think well i have a inconvenience yes it is a bad thing kidney disease. But i bet SO MANY people would trade places with me in a heart beat.
You MM are kinda hit with the double whammy. You are a caregiver and then you find out that you have CKD and will need to start D soon. So you have to worry about more then just yourself (as do many other parents) so i think this may have an additional effect on your thought pattern.
For me kidney disease or not I'm surprised i have lasted this long in life.
I was badly badly abusing myself for well over 20 years.
So in my head i kinda figure well for my past decisions in life this is my punishment. Even though it was passed on in my genes.
This has helped me cope and deal with my disease.
You will get through it :cuddle;
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For me kidney disease or not I'm surprised i have lasted this long in life.
I was badly badly abusing myself for well over 20 years.
So in my head i kinda figure well for my past decisions in life this is my punishment. Even though it was passed on in my genes.
This has helped me cope and deal with my disease.
You will get through it :cuddle;
It makes me profoundly unhappy that you even for a moment think of ESRD as punishment because you have always been so kind to me, and you don't deserve this; I don't care what you did to yourself in the past. I don't know if ESRD has helped you become the compassionate person you are now; if so, then maybe for you, ESRD has a purpose, and maybe this helps you cope. I hope so, because you are as deserving of a happy life as anyone else around here.
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Moosemom,
Yesterday I went for my check-up with my nephrologist and she told me it was time to consider when I was going to get my fistula.
I told her I'm not ready to think about it, I'm not going to think about, and quit bugging me about it dammit! I refuse at this point it time! I don't care about the consequences right now. I think I will blissfully live in denial for a few more months. I will not go quietly. I will kick and scream the whole way. I don't say that much here on IHD because everyone seems to take it so well, like you said. But I'm terrified.No, you are NOT alone.
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I've never asked, "Why me"? It's always been, "Why not me?" which is really a scarier question.
I want to be where you are HPS. Yours is the attitude I want for myself. How do I get there? Is it possible to "just do it"? Sometimes I feel exactly that way...don't agonize over what I can't change. But I want to be able to feel that way ALL the time. How do you do it?
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Moosemom,
Yesterday I went for my check-up with my nephrologist and she told me it was time to consider when I was going to get my fistula.
I told her I'm not ready to think about it, I'm not going to think about, and quit bugging me about it dammit! I refuse at this point it time! I don't care about the consequences right now. I think I will blissfully live in denial for a few more months. I will not go quietly. I will kick and scream the whole way. I don't say that much here on IHD because everyone seems to take it so well, like you said. But I'm terrified.No, you are NOT alone.
I'm not glad you feel this way, but I am glad you've posted about it. That's an honest assessment of how you feel, and I am grateful that you said something. I was starting to think I was just a freak. Sometimes I wish I could be blissfully ignorant or live in denial, but I face things head on ALL the time, and that's not necessarily always a good thing. Listen, Sunny, this may not make you feel better, but while I do hate my fistula and having it created was emotionally horrible (I blubbed until they finally knocked me out...it was the only way for them to shut me up), I do feel some sense of relief that I have now crossed that particular obstacle and that the thing should be ready when I need it, which removes one worry. Maybe you could just allow yourself to gradually get used to the idea.
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I am getting used to the idea of a fistula---for the last nine years.
Part of my issue is that my kidney disease is due to an autoimmune disease for which I had to fight so hard to overcome. If I hadn't had the stamina to be such a fighter, I would be dead now, that's a fact! It's that fighter in me that won out over the autoimmune disease which causes me to rebel even now. I can't help it. It's a part of my tenacious, stubborn personality. I know that when I really need to, I'll line up as needed. In the meantime, I hold out hope my sister will actually commit to donate, and I harass Stanford all the time to re-activate me on their cadaver list. I will be a squeeky wheel.
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Yep, Sunny...I can see that your stubborn personality has served you well. I wish your sister had the same fighting spirit so that her hemorrhoids would not be preventing her from donating. :rofl; And you know, you just might be lucky and get that transplant before you need D, so I don't blame you one bit for holding out on fistula surgery. Is there a reason that Stanford hasn't re-activated you?
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Yes...practice. I can see where "being on top" (and staying there!) is a skill that needs to be developed. HPS, do you ever fall off the top? If you do, is it easy to get back up? I'll start practicing. Thanks for that!
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I think I've been very very lucky in many ways with my illness and I think a contributing factor is my attitude which is just a part of my personalty plus events in my life which forced me to grow up fast and made me tough. I was born stubborn and high energy, and have been through many extremely difficult emotional things in my family of origin which robbed me of a childhood. My Dad was a severe alcoholic stemming from not being free to be the person he really was (yes he was gay and closeted and I hate that society forces some people to hate themselves because of this fact of life) and since my mother didn't drive and we lived in rural Jamaica, I was angry very,very often, was very practical and responsible and scared I'd die in a car accident almost every day. I also went to boarding school at 10 which provided a respite from worries too huge for a kid and I excelled at school which got a lot of positive attention from some people in my family. My family lived through tons of violence...my Mum was beaten up and lost a baby at 8 and a half months into her pregnancy, in another incident my Dad was chopped and shot and left for dead in the hall of our home the day before Christmas and I went in the neighbour's car to the hospital with his head on my lap as he kept passing out as if he were dead. He was tough too though and he pulled through despite a filed bullet that went through his bladder and took out several inches of a vein in his thigh. I learned a lot about pain that day. I was 13. When that was over the decision was made to move from Jamaica, after 10 generations on my Mum's side. They chose to go to Miami and I refused to go with them since I didn't like Miami which I'd visited as a kid and extremely independent I was ready to be on my own. At 15, I came to Canada where I had an aunt and uncle and I lived with them for a year (we had an extra year of High School, Grade 13, at that time and my parents approved me coming here since I'd have started college at 15 in Miami) then went into residence at 16 at university and started living with my husband at 17. I was 17 going on 60 and he was 23 going on 15 so all in all some kind of balance was struck. Charmed life for him, mine not so much to that point.
I mention all of this because these are things that have dramatically shaped my view of life, death, pain, love, God, joy, sorrow, as well as the incredible importance of living in (and relishing) or living through (and learning from) the particular moment in time in which I find myself. I practice observing my body from a bit of a distance, almost like a form of dissociation, and this helps me deal with the physical aspects of this illness. I would have liked to be a surgeon.
I have a very strong sense of myself but don't think I'm at all important in any grand scheme of things. I try to be a positive force in the areas in which I do have some influence and I find that a certain approach towards people like medical personnel goes a long way towards a better experience for myself. I don't think that any supernatural power is out to get me or to protect me. I don't expect this nor do I find it necessary really. I don't feel anxious much and I truly believe that if my life ended tomorrow it's been enough. I get so much sustenance from nature that sometimes I think I might have been a tree or something in a former life except that I don't put much stock in former or future lives either. I don't think life is fair nor is it unfair really. We're born into a situation and then circumstances plus our free will allows us to seize opportunities or not, to sink or to swim, to cope and to struggle, sometimes it's one sometimes the other and it's not up to me to judge anyone's way of trying to do that.
My life has seen a fair bit of the ugly side but also much of the beauty too. I've been unlucky but also incredibly fortunate. I try to remain philosophical and to control my thoughts and feelings since my experience has shown that many of the things we think we have control over are mere illusions. I don't hand everything over to "fate" however...I try to learn whatever I can about ESRD and actively do everything I can to maximize my health and minimize damage to my body. I was born with a very strong will and I use it. I've had good relationships and have felt genuinely cared about by people. I do my best to return the favour.
MM, I don't think there are any tricks as such that can be taught but I do think that you'll find out how best YOU can cope, if only because there is no other option but to cope and to move past the dark into the light. As I see it, ESRD takes much away from us, only we can stop it from taking everything....and that is true for normal aging also. At the moment, my hands and feet are very painful but as I plant my garden this spring the pain is lessened quite a bit as my projects take shape and today I planted a new japanese maple by myself(Mikawa Yatsabusa to be exact) and I'm writing this as I wait for the evening hours which will be cooler for me to plant as much as I can of all the other stuff I got today at the nursery. And I say to myself that despite the new pain (prograf arthalgia most likely) at least I have the energy of the new kidney. Another reason, besides transplant, that I avoid the sun is that my Mum died at 46 from malignant melanoma so no point adding dumb to blonde, as I see it.
Your posts get all of us thinking and I'll continue to read whatever you write as we go along. :cuddle;
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Plus, I have no god, so there is no point in asking "why me?" These are the cards I was dealt in this fascinating game of life.
I will rail against things I can change, but refuse to waste my time agonising about that which I cannot change.
Whoa, I thought I was the only one who had come to this conclusion, Henry. I think this is one of the advantages of humanism/atheism. I see a lot of people take the bad things that happen to them in life personally. Even as a child, I never remember wondering "What did I do to deserve this?" because I just knew it was a random event. I feel bad for the people who think they are actually being retaliated against, and I especially dislike when people hear my story and try to come up with some convoluted, Biblical explanation for why this all makes sense. I am FINE with it. I don't feel picked on or abandoned by a spiritual being.
I wish I knew what to tell you, MooseMom. My only observation from some of your posts is that you seem to dwell on what might happen, rather than just getting through what is happening. (We all do this to some extent, but it seems to be interfering with your quality of life, which is why I mention it.) I could have come down with steroid-induced diabetes, I probably should have severe osteoporosis as I have almost every risk factor, I had a transplant that statistically speaking should have only lasted five or so years - everyone (on earth, not just here) could provide you a list of horrible circumstances that could have befallen them. I guess I would try to stay in the present - not to say don't prepare, but worry is not preparation.
I also think you will get to a place of peace. Good luck.
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When I had my arms mapped tears were just running down my face. I made myself go but my mind was not there yet. Thus, the tears!
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MooseMom, I truly emphasize with you. I am old, sick and without hope. I know that even the most simple of my dreams will probably not eventuate, such as a few days break at the beach or a final wander around my home town, Sydney. The only person I ever loved is dead. I am alone and lonely. The only reason I carry on is because of my loving cats; if I didn't have them, I just wouldn't bother.
So, fistulas, dialysis and all the rest of the muck is just part of the rotten game. Do you remember the movie "Zulu"? When it looked as though the impis were going to overrun the Welsh troops? A nervous soldier said to his sergeant -"Why us , Sargeant, why us?" The reply from the grizzled old veteran was "Because we're here, lad, because we're here!"
And maybe that's it, MooseMom, we're dealt the cards and it's up to us how we play them.
Good luck to you.
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Oh MM you make life so hard for yourself! You ask "Is it just me?"; I think it is indeed you. You are trying to fight the inevitable. You'll never win! But it's no use telling you to change your mental attitude any more than telling a leopard to change its spots. All I can do is to tell you how I make it easier for myself.
Preparation. When I was about to have my fistula surgery I prepared myself mentally by convincing myself of its advantages. It would be an insurance against having to have a catheter stuck in my neck; it was better than having a tube stuck in my stomach with the risk of peritonitis etc. In this way I mentally welcomed the prospect of the operation. I think that was a major influence in my having a trouble-free experience.
I am also looking forward to the day when I start dialysis. I know that sounds crazy, but I have successfully prepared myself by creating a positive attitude. I like opera and ballet, so I bought a DVD player and lots of DVDs with the object of using it for a few hours every week. I'm looking forward to that because I don't have enough time at present, but I shall have then. I've met some of the the renal team and get on fine with them. In all it will be a big change and a new way of life.
Maybe if you believe in God you could convince yourself that your problems are a cross you have to bear if you are to gain the key to heaven and therefore welcome them. I can't personally vouch for this because I'm certain there is no God.
MM, I hope you can find a way of accepting your lot.
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MM every time I read your posts about your problematic fistula and traumatic surgery to creatt it I think to myself (and I have written this before) that I do not think your fistula is right. I have had mine for 6 years and it never pinches or pops or feels like it has a current or anything else like you describe(unless I feel the thrill, which of course you need to do every day to check it). Otherwise it's just there. Jumpy with aneurysms but it's just part of my arm and I don't really give it much thought. It doesn't bother me duing regular days, like now sitting at my desk at work typing. I really think you need to get this re-checked and if the people you see say it's all fine and normal get it checked by someone else, because it just does not sound right to me - at least based on my experiences with my own fistula.
Like Henry I am not religious... I try not to ask "why me?" or any of that.. I'll never get an answer, and I prefer to focus on what I have rather than have not, or to think "if only..." hey in some parallel universe I could be a billionaire, healthy, living on a tropicial island with a harem made up of IHD women (all healthy and with high libidos!!!) but hey, that's a fantasy... it's not going to help me much now to focus on what might be (though that particular one is fun... a pina colada please!! :rofl; :rofl;)
I don't know how to keep positive. I think I just decided one day to always try and focus on the positive side of things. I gues curling up in a ball and feeling sorry for myself or depressed just doesn't do it for me, and I realise that kind of attitude definitely won't help me get anywhere, and probably is worse for my own well being.
I follow a football team that has been starved of success for the last 30 years (no laughing Mr Galvo!) yet I pony up for a membership each year, and support my club even when we have lost every game so far (that's 9) and are the laughing stock of the league. In fact we're so bad that people actually pity the Tiger supporters.. when they should FEAR our mighty club from the glory days of the 60's and 70's (Yes Galvo, remember the 1980 Grand Final? KB sure does!! >:D). However I hang in there with the newest rebuild and bunch of kids with hope - the future will be better and brighter, and again the sleeping giant will awaken... well I kind of also feel that way about myself.. I'm just waiting, doing the dialysis, and my time will again come (watch out, ladies!! :rofl;) and I refuse to think that I'm going to sink into a mire (I might feel differently if the AFL had relegation!!! )
Try and hang in there! It's not just you. many struggle with this kind of thing every day. It's not easy of course, but it's also not as bad as it could be - I am very confident of that.
:grouphug; :grouphug; :grouphug;
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My only observation from some of your posts is that you seem to dwell on what might happen, rather than just getting through what is happening. (We all do this to some extent, but it seems to be interfering with your quality of life, which is why I mention it.)... I guess I would try to stay in the present - not to say don't prepare, but worry is not preparation.
Guilty as charged. I come onto IHD to read about others' experiences and hope to learn and to share a word of comfort. But the sad truth is that all of the horror stories scare me and I become convinced that what happened to this person or that person will, of course, happen to me, too. I could just stop reading posts on IHD, but that seems dishonorable and I don't wish to ignore others' experiences just because I become afraid. That's too weenie-ish even for me.Oh MM you make life so hard for yourself! You ask "Is it just me?"; I think it is indeed you. You are trying to fight the inevitable. You'll never win! But it's no use telling you to change your mental attitude any more than telling a leopard to change its spots. All I can do is to tell you how I make it easier for myself.
This is true, too. I've learned that I am really brutal on myself, and that needs to change. I never give myself a break. I don't know why this is. But I need to start being much kinder to ymyself.
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Also Stoday, I have made preparations...got a new laptop, a library card and Netflix on PS3 all down in the basement; I've chosen my spot for NxStage treatments when the time comes, so it's really not like fear and anxiety have made me inert. I'm as ready as I can be, and you are right that there is comfort to be found in knowing you're prepared.
Richard, being positive does make life more fun. I don't like feeling this way and I am swiftly boring myself silly. I am thinking that eventually I'll just burn off all of these feelings and will be left with just a small flame that is more controllable. I think I will take your advice and find someone else to look at my fistula if I can get it approved by my insurance. And I do understand about supporting crap teams. I'm no fair weather fan. My crap team needs my support more than ever, as I see it. And thank you for telling me it's not just me. I can't believe I'm the only one struggling.
Monrein, your early experiences would have warped many people and would have twisted them beyond recognition, if not fully traumatized them. You really have made the most of adversity, and I am working to be more resilient like you.
Truly, though, I didn't want this discussion to be about me. What I really want to know is if any of you have ever felt, or now feel, like I do. Stoday, did you ever try to fight the inevitable? Richard, did you ever doubt your ability to continue? And Galvo...your post is gonna haunt me for a very long time. Does anyone else feel like Galvo feels? Is anyone else still in the early, pre-dialysis stage and is trying to find wisdom from the pros?
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I understand hearing about some others horror stories can scare you and you can think "oh that could happen to me!" and worry... but I try to not do that - because chances are it won't happen to me (something ELSE will happen to me!!) but whatever happens you deal with it when it happens not worry about something that may never happen. Now obviously you have to temper that attitude with understanding and not doing stupid things - I mean if I ignore my fluid restrictions and go drink a 2L bottle of water like I'd love to do, well I'm clearly going to pay dearly for that.... but I think that's the sort of thing that I can control. I can't control if my fistula fails at some point, or when I get a transplant call, or if I have a stroke, or whatever else COULD happen to me. I can do all i can to keep myself in decent condition so that my chances are the best they can be, but I don't sit here worrying about X Y and Z that could happen.. that would just get me down, and I may waste energy (and higher BP) stressing about something that may never happen. No thanks.. I'd rather waste my energy(and BP) on more important stuff... like girls!!!! :rofl;
xoxox
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Richard, I still think of you every night when I drink from my bedside sippy cup. Truly, I do. You've taught me to enjoy certain things while I still can, a very valuable lesson. In fact, every time I see a glass of water, I think of you. Gosh, I guess I think about you a lot!
Whenever I see my nephrologist, I do what I gotta do and then get out of there quickly. I think I need to spend more time in finding out from him which side effects of ESRD are controllable/treatable. I thought I was pretty well informed, but I think I lack information that could actually give me some comfort.
Anyway, thanks everyone so much for talking to me and sharing your thoughts. You are all such special people, and my God, you are all so PATIENT! I am always interested in hearing about your feelings and experiences and opinions and suggestions. I've learned so many valuable things from all of you, and it is up to me to practice what you preach.
And Galvo, I'm thinking of you... :cuddle;
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MM If you get time read some of my older posts , you will see you are not alone , i have had some of the worst treatment possible (while like you say others seem to breeze through it) I just scream in my head now , im not greatfull to anyone , i hate this (this is after 11 years) to me its torture but im too much of a coward to die ..at the moment. (and im not old)
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awwww a woman who thinks about me when she's in bed.... now that totally works for me!!! >:D :rofl; >:D :rofl;
Though watch out MM - if you think about me too much you might go blind... oh wait, that already happened to ME!!! :rofl;
thanks for the thoughts!!
:shy;
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MM,
I am having a hard time dealing with my situation as well and I am very angry, but my family and friends will not let me sulk. It is so hard convincing yourself that you will be alright. I have my ups and downs and some days I want to give up. I just had surgery for my fistula and was such a nervous wreck, the doctors knocked me out cold. It is okay to feel overwhelmed and scared and just not want to deal with the fact that we have a problem that is changing our lives forever. Me personally, I am going to try and beat these crazy feelings that I have and everytime i start to feel afraid or frightened I think of my grand children. I know I will not see all of the finish school or college, but is going to fight to at least see the two oldest. They are my strength. I wish you the best and I do believe we all know how you feel because we are all in the same boat. This website has been a lot of help for me, I have went back and read posts from 2005 on up to get answers to the questions I have and by reading through all the post, I have to be honest and tell you that, this site has helped me a lot. So many positives along with the negatives and as the old saying goes, This too shall pass. Not wishing anything bad on anyone else, but there are some who dont have a choice in their care. The bright side, we have a choice to fight or flight.
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Wat76, I read the posts you wrote before your surgery, and I saw how frightened you were. I purposely didn't reply to your post because I didn't want to frighten you. My fistula surgery went well for all practical purposes, but it WAS just about the worst day of my life and I haven't yet gotten over it. It was you who I particularly had in mind when I started this thread because I knew that you felt a lot like I did/do. My surgeon decided he wanted to just give me a shoulder block, but I told the anaesthesiologist that this was a horrible thing for me and that I didn't want anything to do with it, so please just knock me out; thankfully, he did. My son is mildly autistic, and I don't know if he will ever marry. I have only the one child; he lives abroad. My greatest wish in life right now is to have a teddy bear picnic with my granddaughter, but I doubt if grandchildren are in my future. It's the future that frightens me...it just looks like a big black hole, and I have to start believing in my own strength to make it not so. If I continue to believe that my future is a black hole, then chances are, it will be. I know I have the choice on whether to keep fighting or not, and I choose to fight, but I resent having to make such a choice in the first place. When I read about NxStage and all of the palaver that goes into dialysis, well, it exhausts me just thinking about it.
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MM,
My surgery was a disaster and yes I was so frighten and also the worst day for me. I could not look at my arm for a couple of days, I did not take the bandage off until five days after the surgery. I am angry and so overwhelmed thinking about all this and that black hole is looking right back it me. I spent 24 years in the military, i am a very active person, I am so use to traveling and visiting so many people, take a cruise once a year and likes to swim and just go. I have been so sick lately and the idea of me not being able to go anywhere without preparation is going to be the hardest thing for me. I use to pick up and go on a whim or whenever I felt like it, now my life is forever changed. I am not going to give you any advice as to what you should do because I am trying to figure this out myself, and we all handle things differently. The future frightens me as well and that is my problem worrying about tomorrow, it is not easy. I still cry and wish that it was not me. I have PKD and so far one of my daughters have been diagnose with it and she is so positive and continue to try and encourage me, it don't help none. Nothing helps right now, but hopefully things will change in the future. My husband is trying to get me to quit work, i will go crazy if I do, i am going to keep pushing until I cant push anymore. Again, I probably would have ended up seeing a psychiatrist if it was not for this site, i found a lot of my answers to some questions i had on this website and I am glad i found it, the people are real, their situations are real and i am happy i found this site. I try not to spend my days thinking of whats ahead, but boy it is hard as heck, changing my eating habits were the hardest and i miss the heck out of my lays potato chip and fries, but i let them all go. For me it is getting easier, i still get angry when i have to go to the doctor as well and end up taking it out on them, but hey they should be use to it. This is so hard, but It is okay to feel bitter and angry and exhausted.
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OMG Wat, are you my clone??????? :rofl; What I hate about the diet is not so much the restrictions but the mere fact that I have to think so much about it. I've always enjoyed eating nutritious food, but when I'm told that I'm eating too many fruits and vegetables, well, that just weirds me out. It's so counterintuitive. Fortunately for me, though, I like a wide variety of food, so if I can't eat my potatoes, I wallow in my basmati rice, and if I can't eat oranges, I eat berries, and I'm happy. I've truly gotten to the point that I don't like foods that I know can harm me, and I am good about portion control. Once I start dialysis, I plan to do NxStage for many reasons, one being that the dietary restrictions aren't quite so onerous.
Yes...anger. Anger that all of this crap has intruded upon our lives. Yes, we'll do what we have to do to stay alive and reasonably healthy, but it is such an INTRUSION. I hate that.
Don't let your husband talk you into doing something you don't want to do, like quit work. Working can be a real lifeline. But keep an open mind about it. If it reaches the point that working is becoming a real obstacle, and if you do have the option to quit, then entertain the idea at least, and allow yourself the luxury of developing new interests and grabbing new opportunities.
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I have gotten used to my fistula, it was kinda wierd at first. had to learn not to sleep with my head on that arm because the noise kept me awake. feels sore every now and then, but not all the time. I do feel like a bit of a freak, especially when strangers ask "what the heck happened to your arm!!" And my fiance wonders why I don't like to wear short sleaves. :urcrazy; It will get easier over time. My theory is you can get used to anything if you have to put up with it long enough. lol I have been on in-center hemo for about 3 years.
Sean
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My greatest wish in life right now is to have a teddy bear picnic with my granddaughter, but I doubt if grandchildren are in my future
:grouphug; I hope you get that wish. Watching my daughter carry her teddy around giving it hugs and kisses gets me through the day.
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My son's childhood was virtually devoid of joy for me. His autism was a source of such worry and sadness, but more than that, it was really difficult to connect/communicate with him. I missed out on so much, and CKD prevented me from having another child. All of that has changed now that he's older (he's in college and is in many ways a typical teen), but his young childhood is something I just missed out on. And he was the most beautiful little boy you can imagine. One day I'll learn to use my new scanner and see if I can post a photo of him when he was just a little punkin.
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My 5 year old nephew has a form of autism. So I understand a little of what you have gone through. Every now and then he will give my daughter a kiss. It's so cute.
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Morning MooseMom!
heck no, it ain't just you. we are new to all this but i am so grateful for finding this board!
we have not even been able yet to make the transplant interview appt., i confess i am jealous of those who've gotten to the point of even being put on a list.
i will add a few things here, if they help, thats good, if not, thats okay too.
when my 5 children and i are lived alone many years ago on our homestead, we homeschooled and one day a week we went to a long term care facility to volunteer. played checkers, cut coupons, did arts and crafts, put on little shows for the residents. that giving we did made all the difference in my childrens souls. they are all "servants of the heart" today.
when they would occasionally gripe about housework/chores, i would say nothing but load them in the van, drive 2 hours to the city where the ghetto was, drive through it, again saying nothing, then drive home. no more complaints.
over the years we were always found doing some kind of ministry outreach. when we hit one point where we were the poorest we'd gotten, we worked all day at the food pantry for our thanksgiving turkey. just as the pantry was closing, and we were ready to leave with the bird and a bag of food, a young single black mother and her 3 small children came to door to beg for food.there was nothing left, they were turning her away. my children said not a word but took our bird and that one bag of food which was all we had, and gave it to her. i was never so proud. when we got home, on the table sat 6 bags of food. the other volunteers had stopped by my home and left THIER food.
traumatic childhood full of abuse, saved by our grandparents, years as a battered wife, saved by a nasty divorce and years of single parenting, we kept on with our ministry work.
one day i went to work at an ambulance company (paid my way through school with 3 jobs, 4 children at home, homeschooling)..and met my supervisor..and fell in love in 20 minutes. we were married 3 months later.
on that job i saw many things others would have passed out with. the dead and dying, blood, cardiac arrests, gun shots, small children brutalized, you name it, we had it. it didn't take long for me to adjust. it gave me some skills i will always have. the ability to handle trauma and think on my feet comes to mind. when my husband went through this, those skills were my mainstay.
In 5.5 years of marriage, we have faced some hellish events we had to get through. and we did.
my sister has a large family. her 10 year old was DX with ALD 2 years ago. he went from being a happy fat little 8 yr old full of life, to undergoing chemo, bone marrow transplant, is now in wheelchair, deaf and blind, and at any time of the day has 33 IV bags hanging. when i get overwhelmed, i call her.
thing being, for us, it is not so much going through this, but the maze of the medical system we have to deal with, and "you find out who your friends are" thing.
our biggest obstacle right now is dealing with the above. i don't feel self pity, but rather frustration wondering how we will do this long term. i don't know which is worse.
it has been hell fo rmy husband to go from wearing a paramedic uniform one day and saving lives, to being in a hospital gown the next worrying about his own.
you have to do what you have to do, because for us, the alternative is unacceptable.
many hugs to you moosemom, we must be here for eachother because no one else truly understands..
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I thought about this a lot and I think that the transition to the idea of dialysis is really hard. I cried for days. After you have been on dialysis for awhile you realize that there are some things you can enjoy and you start to accept it. You never get to like it, you just get used to it.
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Ah jeez noobie, really, this disease must force your husband to redefine himself (or thinking he has to). To go from saving lives...and seeing yourself in that light...to being barely able to function...well, it really does a number on your self-image and self-esteem. And the events you've described...well, they are almost unimaginable. Your nephew with ALD...how very cruel. Thank you for your story; everything that you've posted has helped me put things into their proper perspective. Yes, we are certainly here for each other. I know your husband is used to saving lives. I don't mean to be trite, but you and your husband can offer real solace and support to other people who are battling like you are. Perhaps your DH does not feel up to it yet, but if he ever thinks about posting here, I'd bet that there would be several people who would be grateful for anything he could share.
Does your husband plan to pursue a transplant?
And bette1, I'm sure you are right. Some things you just have to get used to...
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geesh did it again. erased my post before i could post.
DH and i worked on the rig in 4 counties 911 for 2 years, together. we were a great team.
now today: simply put as i see it: we will not be able to cope how we are long term for these reasons:
doc/clinic/hospital visits too frequent and 2-3 hr drives.
lack of any help with any aspects of this situation other than my son and i doing it all.
running a homestead and many animals out in the boonies in the middle of winter is hard enough, add the care of DH and all the above mentioned visits..
financially we are making..for now, barely.
doing all this and more again through the winter, i don't think i can do it again.
so whats the solution?
well, not being the kidney patient i can look at it a little less emotionally.
figure out the best place for care and shortest TX wait time. move there, even if just temporarily.
set up the best situation for all involved in the long term.
been trying to tell nurse about DH's signs/symptoms for weeks. due to all antibiotics he has over last 2 months, i believe he has developed C-Diff, and has had it for weeks. i was all but crying last clinic trying to get nurse to see this. i got vague answers and "tell the doctor in a month".
in the meantime, DH gets worse, so called on call nurse last night. she advises taking him to ER. he doesn't want to go. i try to tell him if he doesn't make these decisions, a time will come when they are made for him. i hate waiting till crisis time to act on this.
has 3 sons. all healthy, who have offered to donate. but we first have to make that appt with the TX team. i will make a new appt and get us there if we have to camp in parking lot.
i did get him to read some of the info online today so he has a better understanding.
it seems like every time he's been sick, it was me who spotted it and got it DX and TX.
i'm worn thin would be an understatement..
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Your DH is lucky to have you. I would be amazed if he is not suffering from depression (and with good reason). Ill health will do it to you, and such a sudden and dramatic change to your life would do it, too. I find it very telling that a man who has spent so much of his life in such a high energy, pro-active job now can't be bothered to look after his own health and try to piece together an action plan and is alive probably only because his wife stays on his butt...well, you see what I mean. It is hard to be your own advocate when you are sick. It's hard to manage all of the medical stuff AND purposely add more to it by going through the transplant stuff!
I think you are being very smart in evaluating your circumstances and the obstacles that lie ahead. Just as people find they might need to relocate for a specific job, you may need to relocate for the same sort of reason. It's not easy to give up on a dream or on a way of life, but if that way of life is just making things more difficult, and if you have the choice to change, then you may find that making that tough decision now will bring rewards later. I don't have a great deal of confidence in your DH's medical team...it seems like you have to knock heads together to get anything done. I am really interested in what you end up choosing what to do and how you arrive at that decision. In the meantime, you can count on the rest of us to offer support!
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25 years as paramedic/firefighter..he has seen too much of what "might" happen..
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Sanguine about things?? ME??? Hahahah! I run around half the time like a chicken with my head cut off. If it were not for friends and IHD.com I would have lost my mind....oh no there it goes again! I know I look calm on the outside but inside the hamsters are running rampant.
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Sanguine about things?? ME??? Hahahah! I run around half the time like a chicken with my head cut off. If it were not for friends and IHD.com I would have lost my mind....oh no there it goes again! I know I look calm on the outside but inside the hamsters are running rampant.
Do you ever find that you work really hard to keep things in perspective and to keep your sanity intact, and then suddenly some small thing will just send you into a downward spiral? I was doing pretty well for about a week, but over the past 2 days, several otherwise unimportant things happened that cumulatively made me feel worthless, forgotten and generally wretched. Now I feel like I have to rebuild my defenses again, and it is such hard work. I don't have that much energy to begin with, so trying to constantly distract myself and stay "optimistic" just wears me out. Do you ever feel like that?
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Of course we do! That is why we need our friend and family and IHD family!
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MooseMom, your words "feel worthless and forgotten" rang so true with me. I know I am not worthless or forgotten, but it feels like that some days and I could never voice this to anyone. They would all be so hurt -- but those two words describe some of my days. And yes, staying optimistic is a full time job!! If I don't stay "up" people wonder what is wrong with me. Duh! Oh well - at least all of you understand!!
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Moosemom,
Yesterday I went for my check-up with my nephrologist and she told me it was time to consider when I was going to get my fistula.
I told her I'm not ready to think about it, I'm not going to think about, and quit bugging me about it dammit! I refuse at this point it time! I don't care about the consequences right now. I think I will blissfully live in denial for a few more months. I will not go quietly. I will kick and scream the whole way. I don't say that much here on IHD because everyone seems to take it so well, like you said. But I'm terrified.No, you are NOT alone.
Your reaction is natural and common and I had it too. After many years and maybe 6 grafts and fistula operations, I am (perhaps) wiser and (perhaps) less afraid. But what i want to tell you is sooner is better than later for several reasons. 1.You are still fairly strong and you will better tolerate the operation. 2. You may be able to avoid an extra procedure, the Permcath, if you get your access squared away. These are bigger considerations than you can imagine now, but please consider what i have just said...Best wishes, Sid
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Do you ever find that you work really hard to keep things in perspective and to keep your sanity intact, and then suddenly some small thing will just send you into a downward spiral? I was doing pretty well for about a week, but over the past 2 days, several otherwise unimportant things happened that cumulatively made me feel worthless, forgotten and generally wretched. Now I feel like I have to rebuild my defenses again, and it is such hard work. I don't have that much energy to begin with, so trying to constantly distract myself and stay "optimistic" just wears me out. Do you ever feel like that?
Yes.
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I feel that exact way several times. Sometimes it hits me over little things that have been added to the big things. I have a morbid sense of humor when I am down and out.
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wow gud stuff i think we all hav days when we hate d more than usual its ok 2 b mad angry even furious w the entire dialysis system but for me its most important 2 remember that d is not my life only a small part of it even though it doesnt always feel that way do what it takes 2 make d easier 4 u so that u can savor the time that u have away from d all the more gud luck...later
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totosidney, I got my fistula back in March. I don't know if it is mature yet, but it buzzes like crazy. I haven't needed it yet, but I am hoping that it will be mature when the time comes. I am not enamoured of the idea of a Permacath!
natnnnat, well, that was unequivocal! :rofl; :rofl;
kidneyboytrip, I'm not actually on D yet, but my mother is, and I see what dialysis does to her. Of course, she is 30 years older than me, so it is not a fair comparison. I know as much about dialysis as anyone can who is not yet on D but soon will be, and I know things will be rough at first. I get scared when I think about what is to come, but then I have to remind myself that there will come a day when I am eager to start D so that my body can begin getting rid of all the nasty stuff. I'm just at a very awkward part of the journey. I know there are several people on IHD who are in my exact same position.
paris, I got an email from my half-brother the other day, just asking how things were going. We've never lived together, so we are not close, but occasionally we keep tabs on each other. I explained about the fistula operation and that I was going through the pre-transplant testing. I didn't whine (it's true!), and I did my best to sound hopeful. When he replied, he didn't make a single mention of what I had written; it was as if he had completely ignored the fact that I was ill enough to have to prepare for dialysis. Now, to be fair, perhaps he assumed that I had an ulterior motive, that I was fishing for him to donate a kidney to me, but he is 13 years older than me and I don't think he would be a viable donor. I could be wrong, but if a member of my family told me that he/she was about to start dialysis and was also trying to get on the transplant list, I would have at least acknowledged the situtation. I don't expect anyone to fawn all over me, and the thought of being the center of attention under any circumstances just makes me want to run screaming into the night. But because I have been under such stress lately (like all of us on IHD), perhaps I was a bit sensitive, and it just hit me the wrong way and made me feel like no one gives a XXXX about me. But my half-brother is a rather odd unit. I don't usual;ly suffer from hurt feelings, but the other day, I did.
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I hate that weird awkward limbo. I hate when people ask me how I am doing but, if they don't ask, I wonder if they care? I prefere that people don't mention how noticeable my disabilities are but, if they ignore my disabilities, I wonder if they think I am perfectly healthy. I want people to understand what I am going through but, I don't want them to pity me. I want people to realize how much pain I am in on a daily basis but, I don't want to be treated like I am fragile either. I don't want the attention but, I don't want to be ignored either.
I suspect your half brother simply didn't know what to say. I find that my guy friends have more difficulty talking about my condition than the women in my life.
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I suspect your half brother simply didn't know what to say. I find that my guy friends have more difficulty talking about my condition than the women in my life.
My half brother is a published poet. He is remarkably intelligent and reflective person. He has known about my kidney condition for years; it's not like he has been shocked into muteness by any disheartening revelation. I don't know what's he's thinking (or not), but not knowing what to say is not the problem. Anyway, it's no big deal, but I just thought it was weird.
You are right about the awkward limbo. I don't know a lot of people in the town where I live; this is where my husband has lived for some time. Most people who inquire about me do so through my husband. It would be nice if occasionally someone picked up the phone and asked me in person, but I really don't care that much. I don't know what I want from other people, so I figure if I don't know, I can't expect them to always do or say the "right thing". As for my brother, he was the one who asked me how I was doing; I told him, and he just ignored it. I don't plan to mention it again. I don't really need to.
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No it is not just you!
Every renal patient on this site as had up and downs Struggling with dialysis. Plus the side affects of dialysis. Being on hemo was never easy for me, Needle phobic! memories from a child being forced on dialysis, being held down, arm strapped to a board and Valium being given to calm me down. I was only ten at the time. But all the feelings off that ten year old stayed with me. Even when I went back on hemo at the age of 30+. I was on capd for 13 years. Plus I was told i would never have to go on hemo. YEAH! been back on for nearly ten years! Had 3 fistula's now only have a part of one working. So on lines now feel much better about hemo with no bloody needles! They say they can not form any more fistula's in my arms. So on lines until they can not get any more lines in. THEN WHAT ??? I DO NOT KNOW ??? But I am sure they will work something out. When the time comes.
You are not alone feeling this way, but you will get through it. Hey! we all have to, plus this site helped me through the months when they were going to amputate my leg. This site is always here, I know. It has helped a lot of renal patients with friendly advise.
Yours Kevno :cuddle;
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Kevno, I'm not even ON D yet, but I'm already freaking out. But one thing this forum has taught me is that each part of the journey is fraught with unique perils.
If you don't mind me asking, could you explain more about being "on lines"? I don't know what that means. I can't begin to imagine what it must have felt like to be 10 years old and having to go through dialysis in the way that you did. I can certainly understand how those feelings would never dissipate.
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On lines, I'm guessing Kevno is referring to a perma catheter.
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On lines, I'm guessing Kevno is referring to a perma catheter.
When my mom went on D on an emergency basis (after vascular surgery), she had a catheter put in her neck/chest until she got a fistula working. Is this the same thing as a perma cath? Are there different kinds of catheters?
Kevno, what caused your kidney failure so long ago? I've read some of your past posts...is EPS common in long term PD patients? What causes it?
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In the UK they are called Tesio Lines They are only meant to last as long as your fistula is maturing. For a fistula around six weeks. But now i have such poor veins. A fistula is no longer a option for me. So tesio lines i have had in for about the last six years but just on line and one needle in my fistula. Now my fistula as weakened so in September two new tesio lines. They have lasted in me for up to 3 years before.
As for my how my kidney trouble started. Six years old when they found out how poorly my kidney was. I had been ill for a couple of years before that, but the doctor just gave me antibiotics. It was my Mum who took me to hospital to find out why i kept getting urine infections. They found out it was reflux. Was told must likely had from birth. Something that can be sorted out easy nowadays, (if found early enough). But in the 70's I had two operations to try to save the one kidney still working. But the operations did not work. So at the age of ten I started hemo.
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Hi, I am still using a cather for access because there was a great possiblity of having a kidney transplant within a short time frame. Well, my donor had a change of heart. Now its two years later and I am being bullied into getting a fistula. I have not had any infections and my cather works quite well. I am even inclined to think that some one is getting paid off to send patients for fistula. Just teasing. I do understand the risk involved in keeping my cather. So, I am having a fistula surgery scheduled soon. I watch those patients who sit around me in D and they seem to be uncomfortable most of their treatment. I am praying that I will continue to be comfortable during treatment. I have seen quite a few patients where the techs have blown out their fistula. So, my plan is to learn how to put myself on and to take myself off. Is this too far fetched? I will do almost anything to keep some techs from touching me. I truly feel that people do chemo and other type of treatments and how they feel is important. I have yet to experience this in D. So, I arm myself with information so I am aware of what should or should not happen. I wish you the best. Fear is an awful thing.
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Just in case grannysgirl comes back to this question she posted in june... there's a conversation going on now about putting yourself on the machine and taking yourself off, and a pretty useful article okarol posted, at http://ihatedialysis.com/forum/index.php?topic=19555.msg331277#msg331277 (http://ihatedialysis.com/forum/index.php?topic=19555.msg331277#msg331277)
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I think I may have had a different experience than most, and that gives me a bit of a different perspective. my intro to dialysis was a baptism by fire. We knew I was sick, and was getting steadily sicker for about 3-4 months. But it seemed more like a flu, and it would come and go. Some days I'd be fine, and others I was puking and passing out. I lost a lot of weight over that time, but being 12, I had always been told that was the time when you started getting taller and really lost off that baby/kiddie fat. I was losing so much, and I was really getting thin, I actually looked good. My mom says that my school picture from that year was one of the best ever taken. We just didn't realize how sick I was.
As I got worse, Mom started taking me to the doctor and to the ER, and they kept diagnosing throat and ear infections and sending me home with antibiotics. The last was my family doctor, who told me I had pneumonia and sent me home with yet another prescription.
The next day, around noon, I remember telling my mom that I was going to go take a nap, which was something I had been doing a lot of too, along with being oddly cold, having little appetite, grinding my teeth, feeling dirty all the time (my skin felt like it was crawling), and my hands seemed to have a funny smell to them. Later that afternoon, my little brother, who was only 6 at the time, came downstairs and told Mom that I was making funny noises. He is credited with saving my life, because Mom wasn't planning on checking on me for at least another hour or so. When Mom got me, I was in the fetal position, and my hands were clamped into little fists. I couldn't move, I couldn't speak, I couldn't do anything. My parents managed to get me downstairs, and they called an ambulance.
The doctors didn't know what was wrong me. I remember then talking about brain seizures and strokes,life expectancies, and things like that. Mom told them to shut up, because she realized that I could hear and understand evething they were saying. The pediatrician came in, and because she had trained under a pediatric nephrologist (the one who looked after me, actually), she had seen what happened to me before, and she knew right away that it was kidney failure. She took some blood, put me on calcium by IV, which actually unlocked everything, and had me airlifted to the children's hospital in Halifax. I started on PD the next day.
We knew absolutely nothing, and learned as we went along. We didn't have the time to prepare like a lot of people do, so we pretty much did what we were told. If the doctor said something needed to be done, it was done. There was no resisting, no "can it wait a while?" it was just done. As a minor, I had no choice, it was all just done.
Now that I'm an adult, and this is my third shot at dialysis, I feel the same way. If something needs to be done, it's done. No questions. I'm lucky that I have doctors who are patient with me, because I ask a lot of questions. What's different now than when I was a child, if something seems wonky to me, I won't do it. I didn't have the choice when I was a kid, because I wasn't the one signing the consent forms.
I think that because everything was made to be not that big a deal as a kid, although I'm sure my parents were petrified, it didn't seem like it was. I got scared a lot, I hated biopsies, but I think most kids, I looked to the adults around me, doctors, nurses, my parents, to gauge how serious the situation is. As long as they were all smiles, I was fine.
I think I've kept that kind of attitude from when I was a kid. As long as no one else was worried, I wasn't worried. It's not like there aren't days when I wonder why the heck I do all this crap, but those days pass, just like any other day. I went from a relatively easy life on PD to a little more complicated life on HD, and I'm doing well. I did cry when I was told that there was too much scarring to go back on PD, and when I got home from the hospital after being told that, I started asking about a fistula. I had the fistula done with a shoulder block, and they gave me conscious sedation after the block was done, so if I saw what they were doing, I don't remember it. *L* I went to my cousin's wedding 3 days later with my arm in a sling
It may be a bit of a cliche, but I go with the flow. Sh*t happens, you deal. I've tried to not let dialysis take over my life. I travel, I go out with friends, I'm looking into going to university. I have days when I feel like nobody in the world gives a rat's ass about me, even though I know that's not the case. There was even a period of time a few years ago where I was trying to figure a way to stop dialysis without anyone knowing what I was doing. Thankfully, I never did figure a way.
Man, I talk a lot.. *L*
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Gosh, Riki, that's quite a story. I guess if you've been a kidney patient practically your whole life, it's a bit easier to go with the flow. I think I allow myself to get overwhelmed by what the future probably holds, and I am going to try hard to live more in the moment. My mom passed away last week, and that's the ultimate distraction from my own kidney woes. But it worked. I haven't had time to faff about with worrying about D..I've done everything I can do to prepare myself. And now I am just going to concentrate on getting through the next few weeks. Both of my parents are now gone, and that fact pushes everything else out of my mind, which in an odd way is a bit of a comfort.
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Man, I talk a lot.. *L*
I find it so refreshing reading your post Riki. It is nice to feel the positive energy & youthful energy. So much of our lives are filled with things that make us feel old that you perk me up. Keep on talking girl!
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Man, I talk a lot.. *L*
I find it so refreshing reading your post Riki. It is nice to feel the positive energy & youthful energy. So much of our lives are filled with things that make us feel old that you perk me up. Keep on talking girl!
as long as I'm not annoying anyone, I'll keep talking. *L* and writing those dang books... *G*
I'm a bit of a writer, but I need to get the fact that word counts don't matter on message boards through my head... *LMAO*
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I had my second fistula created about 4 months after the first one that never matured. It has been 5 weeks and my arms still hurts bad! I woke up during surgery when they were stapling my arm and started crying. They told me that I'd never remember it anyhow and to stop being a baby. I had the staples taken out 10 days later and it was the worst pain that I have ever felt and that is saying a lot. The nurse told me that it doesn't hurt the little old ladies that come in and she couldn't figure out why I was hurting so bad. I hate showing emotions of pain in public so for me this was big.
Ok, this is how I deal with it. I am currently on PD and I know it wont last much longer so I wanted my fistula vs a chest cath. I try to make friends with it when it is buzzing and wakes me up at night. It will someday be my best friends and will be what keeps me alive. It is apart of me and I have no choice, so I deal with it.
Kidney failure isn't easy, but seriously there are worse diseases out there that many people deal with. I feel lucky to be kept alive while I wait for an organ. If I had liver or hear failure I wouldn't be as lucky. I'm thankful that this disease makes me feel tired and not in severe pain like some people. I can pretty much look normal and still enjoy a relatively normal life.
A LOT of people have major food restrictions and fluid restrictions. My friends daughter can't eat anything with gluten in it. That is worse then a renal diet!
Soooooo.......look at the positives in life and know that you are not alone or different. Most people will either have to deal with a major life changing illness or be a care giver of someone with a major medical problem.
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Pain is a very personal thing, an experience that is unique to everyone. I get terribly annoyed when medical people dismiss my pain as irrelevant. Fortunately, that hasn't happened often to me, but when I hear it happening to someone else, it makes me really angry. It's disrespectful to make anyone feel like "a big baby."
I don't ever try to hide my trauma or my fear. I figure I have every right to feel whatever I feel, and if it makes some nurse uncomfortable or judgmental, then she is in the wrong profession. I figure that the nurse will go home at night and won't ever remember my blubbing, so I blub away with impunity.
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Hell if it hurts im going to let you know and if my reaction to pain is too thrash my arms and just just happen to be in the way ..tough ! :rofl;
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No nurse, tech or doctor should EVER ignore a patient's pain because pain is an indicator that something is not right. Severe pain can send you into shock; it is in a doctor's best interest to investigate pain, its source and its intensity.
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MooseMom:
Sorry for the loss of your mother. The nurses at the kidney clinic say "Pain is your body telling you something. Listen to it".
That has prevented me from further damaging myself as I continue to struggle getting the needle in my arm on home hemo.
I still have problems dealing with dialysis after 4 years and decades of kidney disease ( I suspect I was born with slow dying off of my kidney filters).
And my dialysis problems range from the serious ( failing pd, my arm blowing up on hemo) to the bizarre.
I am struggling with my buttonholes. Last night I got the needle in without damaging surrounding tissues :bandance;
Then insanity reigned :sarcasm; I put the blood sample needle in to get the pre dialysis weekly sample.
Got the blood sample. Went to remove the blood sample needle to hook up to the machine.
Couldn't unscrew it with my limited dexterity (one hand only being available).
Grabbed the regular scissor to try to unscrew- failure! >:(
Tried a plastic blue clamp scissor - broke the scissor. :o
In desperation ( I am not a quitter!) used my fingers - stabbed myself :thumbdown;
Shouted out "What I am going to do?" - didn't ask God ( loss faith after the kidney failure)
Figured out impossible to dialysis like this. Had to remove needle from buttonhole.
And try again- success and no further damage. :bow;
To keep from crying, laughed that at least I had an usable blood sample.
Is there a message board for patients' bizarre experiences?
jg :canadaflag;
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MooseMom:
Sorry for the loss of your mother.
Is there a message board for patients' bizarre experiences?
jg :canadaflag;
Thank you...I appreciate that.
And yes, there is such a message board...it's this one. ::) If it's bizarre, it belongs right here on IHD.
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Last week I wrote about my bizarre experience doing a blood sample at the start of my hemo run.
This week is about doing the blood sample at the END of my run.
I got the sample and then blood started squirting out of a line onto the carpet, the bed, and me.
I frantically clamped the line the best I could to get the flow to be a trickle.
What the beep ??? happened? When I took the needle out of the port, I nicked the line.
I quick call to the hemo clinic. The nurse said to tape the nick and run things very slowly to test.
Still leaking a little. So no choice but to turn off machine and wave goodbye to about 300 ml
of blood still in the tubing. Not surprising, my blood pressure dropped and I was dizzy.
Hopefully that won't happen again. But I am sure something else bizarre will occur.
I have to keep a
sense of humour because I am fragile all the time, both physically and emotionally .
jg :canadaflag;