I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Tara on June 20, 2006, 06:08:25 PM
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My mom has hereditary kidney disese and high blood pressure, just 2 days ago her doctor told her to go to the ER because her potasium was extremly high, she had an EKG and gave medication to bring levels down. Well she is apprently not wanting anyone to know how bad things are, she casualy mentiond that she may need to go on dialysis. Thats not good right? be honest how long can someone typicaly live on dialysis? shes 42
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the way things are going you might have to put up with her for another 30 - 40 years or more
always a chance for a transplant too
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Hi Tara, Welcome to our board. As you have seen from the start, this is a place to get answers and support. Could you please go to the forum "Introduce Yourself" and do that? It would be good if you could get your mom to join us. This site was more than helpful to me when I first found out that I had to go on dialysis, and it was a real tool in preparing me for my challenge.
Looking forward to hearing more from you.
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My mom has hereditary kidney disese and high blood pressure, just 2 days ago her doctor told her to go to the ER because her potasium was extremly high, she had an EKG and gave medication to bring levels down. Well she is apprently not wanting anyone to know how bad things are, she casualy mentiond that she may need to go on dialysis. Thats not good right? be honest how long can someone typicaly live on dialysis? shes 42
You want honesty ok, your mom WILL NOT die from being on dialysis, she can live indefinately on dialysis, she will however die from complications of dialysis. But she is 42 she can get a transplant or live another 30-40+ years on dialysis. It will be a tough road but if she's a fighter she will be fine.
- Epoman
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Hi Tara, Please make sure your mom understands her options, there are different ways for dialysis, Hemo, CAPD, Nocturnal and i think there are a couple more, the only reason i know that is from this awesome website. When i started off i began with Hemo, going to the clinic 3 times a week for 5 - 6 hours a shot, not too sure how your mom feels about needles and blood but those are some disadvantages of being on Hemo, I have since started doing PD, I have to admit, it took some getting used to, i do it every night, 10 hours while i sleep (or play on the pc) lol, but i would recommend PD to anyone, before i would Hemo, the diet isnt AS restricted and you arent AS restricted on fluids, but you do have to be careful. I am sure if you have any further questions myself or anyone here (these people are awesome) will be more than happy to answer anything you need to know, Good Luck to you and your mom, please tell her not to worry, there is still life while on dialysis, we are all proof...... Hope to hear from you again soon,
Goofynina
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If her potassium is going up then something musnt be quite right. If she isnt going to be put on dialysis right away, I would hope that they educated her about a low potassium diet, just to keep her well until she needs dialysis (if thats the case). Its important to know, that high potassium can cause a heart attack, and you cant always be revived. Im sure if you ask members here there will be more than just me who have experienced the trip into ER with high potassium.
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Hi Tara,
Before anyone gets too excited please have your mom visit with a nephrologist. I understand that she has a hereditary disease of the kidney, but often people have that their entire life without being on dialysis.
There are several medications for your heart and high blood pressure that can make one's potassium go up, even without compromised kidneys. A good nephrologist will really look at that end of her care. I've seen patients have emergency dialysis through the ER and never need it again after a medication adjustment.NEWS FLASH: Please know that most ER doc's (and family practice)have a very limited knowledge of renal patients and their highly specialized meds/diet needs. A good nephro. can adjust meds and diet and keep pt's away from dialysis as long as possible.
If she does need dialysis remember that the statistics for lifespan that you will be quoted reflect data from years ago.Technology,medication and monitoring is better now. Sometimes people get upset when they hear that the US has a higher mortality rate than many countries in regards to dialysis. Remember this: In the US we begin dialysis on anyone, no matter their age or physical condition. I have dialyzed many poor folks over 90 years old with weak hearts/ dependant on breathing machines just because their families could not let go.Obviously, these people do not have a long lifespan but are nonetheless counted in the stats of the US. There are other countries who do not consider dialyzing people like this.
I have dialyzed a man who was on dialysis for 39 years,he worked most of that time as a school teacher. He died by a head injury clearing trees from some land that he owned. Wonderful man.
Best wishes and prayers to you on this journey, you have found a wonderful forum here and a BS-free source of info in this board.
-maryann
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Well said ginger cookie!
I think its terrible that some families will put their frail aged mother/father through dialysis. If they arent capable of making the decision themselves, then I dont think it should be the families decision. By this I only mean if they are like 90+ and so old and frail with no quality of life. If dialysis were to give them QOL back then thats fine. But to put them through dialysis when there is no QOL, just so the families can keep them alive, is cruel. I would want them to just let me go.
I think in time my pop is going to need dialysis, and I am 99% sure he will say get stuffed let me die. He is only mid 70s, but has battled cancer, and has uncontrollable diabetes, plus heart problems. One of my mums aunties is looking like she will need dialysis soon too, and I think she will also choose not to do it.
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I am in agreement. Letting go and letting God when the person old an frail and has no quality of life is the right thing to do. I would not want to be on dialysis and be out of my mind or so old it is the only thing keeping me going.
Besides dialysis is good for those people who can take it and really use it. It is a hard slog and you need to aware of what lies ahead.
Katherine
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Thanks for all your resonses! Shes going to see some specialists. She is a RN, so I think so knows more then shes letting on, she doesnt want anyone to worry. She has seen many family members going through this, as well as patients.
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I think I know what you are through right now. It is devastating to find out that a loved one will need dialysis. I know, when my daughter was diagnosed, I did a lot of research on the different dialysis options, and none of them sounded very pleasant. If I can give you and your family some advice, I suggest you always try to go with your mother to her doctors' appointments. Don't take no for an answer from her. Tell her that this affects the whole family, and you have a right to know what is going on. Your mother is still young, and if your family stick togeather you will get through this. I am keeping a record of my daughter's dialysis experience on my blog.
I know it is overwhelming for you, but it will get better, as long as you are involved in your mother's treatment.
Hugs, Ulrika (Christina)
http://www.kidneytransplantforkyliesmom.blogspot.com
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I have a friend he has been on dialysis for 34 years now maybe a lil less maybe more not sure exactly anyways he is 50 now and is very healthy. The thing is he is also very strict with his diet and always looks at how much he drinks and what he eats. so as u can see u can live a normal life span even without natural kidneys..
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I have a friend he has been on dialysis for 34 years now maybe a lil less maybe more not sure exactly anyways he is 50 now and is very healthy. The thing is he is also very strict with his diet and always looks at how much he drinks and what he eats. so as u can see u can live a normal life span even without natural kidneys..
That is very encouraging.
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Indeed!
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I consider dialysis life support.. since really, that's what it is.. without it, I would die... I have a pretty good quaility of life on dialysis.. I work part time.. from home, mind you.. I'm active in the community.. I can't get down on the floor and play with my nephews.. but I can still play.. *L* dialysis doesn't necessarily mean death.. and it doesn't mean life and living will stop either... most of my coworkers don't even know I'm on dialysis.. that I'm sick at all... you can't tell by looking at me that anything is wrong.. I guess I look a lot healthier than I am.. *L* anyway, my point was that we can go on living on dialysis.. indefinatley... and transplant is an option as well... I'm keeping my fingers crossed.. my next one is coming!! *G*
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I consider dialysis life support.. since really, that's what it is.. without it, I would die... I have a pretty good quaility of life on dialysis.. I work part time.. from home, mind you.. I'm active in the community.. I can't get down on the floor and play with my nephews.. but I can still play.. *L* dialysis doesn't necessarily mean death.. and it doesn't mean life and living will stop either... most of my coworkers don't even know I'm on dialysis.. that I'm sick at all... you can't tell by looking at me that anything is wrong.. I guess I look a lot healthier than I am.. *L* anyway, my point was that we can go on living on dialysis.. indefinatley... and transplant is an option as well... I'm keeping my fingers crossed.. my next one is coming!! *G*
I am finally going back to work and am nervous as hell! How come you work from home?
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I work from home because it's easier.. *L* I'm legally blind, so don't drive.. and there isn't public transportation where I live... so it was just easier this way... i've only been working from home for a couple of weeks... before that, my mom or my bro drove me to work..
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I work from home because it's easier.. *L* I'm legally blind, so don't drive.. and there isn't public transportation where I live... so it was just easier this way... i've only been working from home for a couple of weeks... before that, my mom or my bro drove me to work..
Ah yes, that makes sense :) At least I have public transporation semi-close to me and I can see perfectly with glasses and I have disability-paid taxi cab service for any medical appointments.
What do you do?
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technical support... call centre work... I use a voip system through my computer to take calls... and vpn to the company server for logs and other info I might need..
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technical support... call centre work... I use a voip system through my computer to take calls... and vpn to the company server for logs and other info I might need..
That is sooooo cool!! :)
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I must say that this particular topic ' how long can one live on dialysis?' is very important to me. I have been encouraged by the postings. I want to be around to see my grandson grow up - he is three years old now.
I am always chatting with the 'oldsters' in my centre - no one there is over 60! But I like hearing from those who have been on dialysis for over 10 years. When I first was diagnosed, I said that I did not expect any more than 10 years (that is how much my brother had).
However, I should never compare myself to my brother. I had breast cancer at age 43 - twenty years before, my sister had it at age 42 and died. But here I am 13 years later. Who knows? I might have another 40 years on dialysis!!!
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I must say that this particular topic ' how long can one live on dialysis?' is very important to me. I have been encouraged by the postings. I want to be around to see my grandson grow up - he is three years old now.
I am always chatting with the 'oldsters' in my centre - no one there is over 60! But I like hearing from those who have been on dialysis for over 10 years. When I first was diagnosed, I said that I did not expect any more than 10 years (that is how much my brother had).
However, I should never compare myself to my brother. I had breast cancer at age 43 - twenty years before, my sister had it at age 42 and died. But here I am 13 years later. Who knows? I might have another 40 years on dialysis!!!
You sound like you are here for a reason :) Maybe you still have some unforseen purpose you are not aware of :) You can't pass on before that point ;) Keep on truckin' ;) I am glad you are encouraged because that is what I have understood this site is for ;) ;D
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"You sound like you are here for a reason Maybe you still have some unforseen purpose you are not aware of You can't pass on before that point"
Where do people get this sh*t from?
I hate crap like that. As if people are meant to suffer here because they are going to have a fantastic life elsewhere. It is utter nonsense. Surely we ALL have a RIGHT to a happy healthy life.
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I'm starting to feel as if my posts are all wrong ... my mom always told that to me .. that I have a purpose .. but we all have a purpose. I don't believe there is a single person who does NOT have a purpose .. thus everyone does .. thus of COURSE everyone has a right to be happy. It was just supposed to be damned encouraging .. but crap .. I am getting very discouraged lately about me posting at all ..
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Angie, you have the right to your point of view. Thank you for encouraging me.
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Angie, you have the right to your point of view. Thank you for encouraging me.
CooL! Thank you :D
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Bajanne, It isnt important how long we are going to live on dialysis, the important thing is HOW we live while we are on dialysis. Enjoy life (although i know it may be hard to do at times) but we can be told we can live 20 or maybe 40 years on dialysis and get in a car accident tomorrow and that last precious day was wasted wondering "how long are we going to or how long can we live on dialysis" Everyone has there own opinions on how long we can but there is only ONE person who can truly tell us that answer and that is God. Amen
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And to that, I repeat - AMEN!!
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I second that. Sometimes, you just need to stop thinking, how long can I live like this? And just live life as best you can. Of course, if you don't care for you own well being, who else will?
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I third that (does that even make sense)!!
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I wish I could work from home. There just isnt anything available that I know of. 99% of the "work from home" jobs are scams and they are plastered everywhere here.
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I'm starting to feel as if my posts are all wrong ... my mom always told that to me .. that I have a purpose .. but we all have a purpose. I don't believe there is a single person who does NOT have a purpose .. thus everyone does .. thus of COURSE everyone has a right to be happy. It was just supposed to be damned encouraging .. but crap .. I am getting very discouraged lately about me posting at all ..
Angie, don't take what "Padster" said to heart. I to felt like him, why me? why was I meant to suffer? well here I am 13 years later and I am owner/admin of a dialysis site that gets more posts per day than ANY other dialysis related site on the net. I could never have done this if I have never walked down this road. And I honestly can say I would do it all over again, if I were given a choice, this is my fate and I accept it and I finally decided to take charge and make a difference in my life and others. This site has given me what I have been missing in my life. "Padster" still needs to find his path. :) But don't get me wrong I still hate this damn disease. Oh and angie, your posts are fine. :)
To "Padster": do not get me wrong, I am not talking against you, it is your right to come on this board like everyone else and speak your mind. :)
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Eopman! What a crock! You could have been Bill Gates and because of this disease you missed out! You would choose this again over what? You don't know what you could have been.
Would I chose this again? Hell NO! It ruined my life and now I'm stuck on Life Support.
Where is Kevno! >:D
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I would not of met my fiance or got a degree if I didnt have kidney failure. Im not saying I like having it though, it sux big time.
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I would not of met my fiance or got a degree if I didn't have kidney failure. I'm not saying I like having it though, it sux big time.
Just think of the HUNK you would have met if you would have been Healthy! Maybe you would have received your PhD!
Don't settle just because you are SICK.
"Oh, ghee I wouldn't have lost my $70,000 a year job and learned to 'garden' if not for dialysis" YIPEEE >:D
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Ummm Rerun, Who said that Amber's fiance ISN'T a hunk, he might be to her, i dont think that is fair for you to take something that she is proud of and tell her "if you werent sick" I am sorry, i am just voicing my opinion here.
Amber. i am happy you found someone, and if it took having ESRD to find him so be it. It doesnt matter if your sick or healthy as long as you have someone to love and someone loves you back, Better to have loved and lost than to never have loved at all...........
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Maybe you're right. I think I'll go find some homeless boyfriend! That should brighten up my life!
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Now why would you go and say something like that??? Wow, i am sorry your so angry.
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Rerun, you know, I can understand why some people are so unhappy with having been robed of their lives because of an unfortunate circumstance. I lost a prosperous business because the Philadelphia civic association did not want a automotive/motorcycle rapair shop in their part of town. Sure, everyone has a lot of what if's and maybe's but the fact remains, everyone must make do with whatever hand they are dealt. Who's to say that your life would have been better if what chain of events that lead you to where you are now, never happened? Life has a lot of crazy twists and turns and well.... sometimes they just don't go as planed. I may not be happy with where I am now but I am at least thankful to god that I am still alive and healthy, still have a roof over my head and food on the table and have someone special in my life that cares for me very much.
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Well, Come ON!
"I would not have met my fiance or got my degree if it weren't for kidney failure" (Oh, thank you LORD)
I've done a lot of things and met a lot of people that I could DO without because of kidney failure (aka, Social Workers, Techs)! Come ON!
How about "I met my fiance and got my degree despite kidney failure" DESPITE this F**ing disease that has ruined my whole life!
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Rerun, you know, I can understand why some people are so unhappy with having been robed of their lives because of an unfortunate circumstance. I lost a prosperous business because the Philadelphia civic association did not want a automotive/motorcycle rapair shop in their part of town. Sure, everyone has a lot of what if's and maybe's but the fact remains, everyone must make do with whatever hand they are dealt. Who's to say that your life would have been better if what chain of events that lead you to where you are now, never happened? Life has a lot of crazy twists and turns and well.... sometimes they just don't go as planed. I may not be happy with where I am now but I am at least thankful to god that I am still alive and healthy, still have a roof over my head and food on the table and have someone special in my life that cares for me very much.
What a revelation! Ya think? Need I remind you that "you are healthy?" And since you and Angie (sick since birth) are so happy why aren't you together? Maybe because of "insurance" and "money" and on and on because she is still sick (since birth)!!
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Well, you can try looking at it this way.
No matter how miserable you think your life is, that there is someone out there much less fortunate then you.
What a revelation! Ya think? Need I remind you that "you are healthy?" And since you are Angie (sick since birth) are so happy why aren't you together? Maybe because of "insurance" and "money" and on and on because she is still sick (since birth)!!
Need I remind you that your still alive?
Angie and I live 600 miles apart and live in different countries. I would like for us to be together but something like this does take a lot of planing. It's not all about the money but it does play a pretty big role in it.
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OMG! Pity Potty! Yes, I don't have leprosy or Polio. Only dialysis. Kidney failure. Lucky Me!
I'm not feeling sorry for myself. I just can't stand here and listen to people counting their "blessings" over what dialysis has brought them. MY GOD! Were you that bad off that dialysis was a step UP in life? I lost my life. I did not gain anything except I'm still breathing.
I need to start a new site called: "ireallyhatedialysis.com" Because you guys are a bunch of wimps!
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I beg your pardon, I AM NOT A WIMP.... Who and/or what gives you the right to sit there and tell US, what we are and what we are supposed to feel? So freaken what?? If we are happy and content with the hand we were dealt SO FREAKEN WHAT???? it is not your problem, it is MINE... Dont sit there and call me or anyone else names just cuz your so "freaken mad" at the world for what you have!!! DEAL WITH IT,,, IT'S ALL YOU CAN DO GIRLFRIEND
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I just can't stand here and listen to people counting their "blessings" over what dialysis has brought them. MY GOD! Were you that bad off that dialysis was a step UP in life?
I think that these people are counting their blessings ( as you so quaintly put it ) because dialysis ( as horrible as it maybe ) saved their lives. And quite frankly, if it wasn't for that fact then living life tied to a machine could be thought of as better then dying. For people in that position, I would think that it takes a lot of curage to keep going, knowing what the future could hold. I wouldn't go as far as calling a dialysis patient a wimp, in fact, I would say they are braver then I.
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I am just so offended that I dont even want to comment.
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I am just so offended that I dont even want to comment.
By whom?
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Isnt is obvious who?
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Yeah well, im not condoning that kind of outburst but that is the general purpose of the forum, is it not? To voice ones hatred of dialysis? I just hope I didn't offend anyone with my comments.
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Yeah well, im not condoning that kind of outburst but that is the general purpose of the forum, is it not? To voice ones hatred of dialysis? I just hope I didn't offend anyone with my comments.
NO, it is not the general purpose of this forum, the general purpose of this forum is to get the "TRUTH" from fellow patients. Rant and venting is just a bonus. ;D
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The Serenity Prayer
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
--Reinhold Niebuhr
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Goofynina, thank you for posting that this morning, I really needed to read something encouraging like that today. It really cheered me up, well, made me want to cry, but in a good way! ;)
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The Serenity Prayer
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
--Reinhold Niebuhr
AMEN AND AMEN!!!!
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How about "I met my fiance and got my degree despite kidney failure" DESPITE this F**ing disease that has ruined my whole life!
You know .. you got a point there. I was going to say I only met Sandman because of kidney disease because in all honesty .. if I didn't lose my transplant I would still have been working at my old better job I had for 9 years, I would have gotten the promotion I was guaranteed if I didn't have to turn it down when my transplant failed, and I still would have been working 12-hr shifts too busy to get a computer or the net (I didn't get a computer until I had all this time on my hands) .. but who knows .. maybe I still would have met Jeff despite it all even if I didn't have kidney disease if it was meant to be. Who knows .. we can't say. The main point is that we have to just live our life to the best and NOT LET KIDNEY DISEASE HOLD US BACK! I mean .. yeah look at Epoman! How successful his site is? Or look at Lori Hartwell who was on hemodialysis when she was only 2 years old and yet now gives talks at kidney symposiums all over North America (Canada and the United States of America!) and used to pay for Jamie to do Magic shows all over North America, or speaking of Jamie, he loved to do magic shows and got the chance to travel all over North America to do what he loved best! Sure Jamie is not with us any more but that brings about another very valid point! We can't just sit on our asses feeling sorry for ourselves! We must live like we have no tomorrow, LIVE despite our disease and be glad that at least it is kidney and not lung or heart! We can still live and we can't let it stop us! Yes, we have had it hard but look how many other things people have had go wrong and despite it all the get passed it and keep on living and not just surviving! We can get mad at what others say because we do NOT agree with it but who says we have to be in total agreement of every perspective everyone else has in life? Who cares? Life is too short to squabble over other's opinions! As anyone going through kidney disease knows, every day can be a battle but somehow we make it don't we? I am glad I have met all the people I have during my journey through kidney disease but I am sure I would be glad to meet all the people I would have met if I had been 100% healthy as well! But the only life I know is the one I am living and so I can only be grateful for the life I know. I am glad I met Sandman as he is the one I want to marry. I am 32 and have never been married because it takes a special man and I have never had kids because I believe in marriage before starting a family. My mom has had it hard and wishes her mother didn't die of cancer when my mom was only 17 and my dad wishes that his dad didn't die when he was only a little boy. We all have regrets (mostly wishing we didn't have kidney disease) but we can't change that now can we? All I have to say is one thing (while keeping this on topic) .... how long can one live on dialysis? As long as we keep on fighting and never give up and live life to the fullest!
When I lost my transplant I honestly felt like my dreams just were swept down the drain! I had soooo many plans and was even putting my doctor appointments on the back burner til I could get that promotion. I had plans damnit!! How could this happen to me?!?!? I was guaranteed that promotion and was supposed to go the same path as my friend Javier! I was supposed to be able to get a raise, a better position, benefits, be able to buy a house so I wouldn't have to worry any more and could do at home dialysis, be able to buy a car that won't break down so I could drive to London Ontario where the closes transplant hospital was! Or even move to London and buy a house! Transfer to the plant in London and be in charge of my own division like Javier did! I had dreams damnit!! And I lost the transplant just a bit to early!! NOOOOOOOOO!!! WHY ME!?!?!?!?
But here I am 5 years later. I some how am still okay. I am not fighting for my life! I am LIVING MY LIFE!!
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When I was diagnosed with my PKD I was ecstatic. ;D Seriously ecstatic. The nephrologist absolutely did not understand. He said I really don't think you understand what I'm telling you here. Your kidneys will probably fail. Looking at your ultrasound, I'd give you maybe five years before dialysis (that was nine years ago!)
I looked at him and said. "You don't understand...My gynecologist told me he thought I had liver cancer. I've been making funeral plans.... Who would take care of my son?"
I think we have to give our lives purpose. That is our responsibility, whatever our circumstances. My son does it by being a good friend (in my opinion sometimes too good a friend, but that's another rant!) and by being so caring to older and "sicker" people. He is a person of tremendous compassion. The older patients at his old clinic really hated to see him move, and his first day at his new clinic, he saw an elderly woman he had been in the hospital with and immediately began talking to her. I could tell she loved it!) He was the mainstay of an older unrelated neighbor until she died, despite his being on dialysis...
I also think that almost no one gets out of life without a lot of suffering. The suffering takes different forms for different people, and happens at different phases of their lives, but all suffer, and in my experience, physical suffering is far from the worst kind.
Do you think you might be having one of those "dialysis moods", Rerun? I think Rerun is needing a big group hug! And let's hope she gets past it by the time she is interviewed...
And if my son had not gotten sick, Angie, I would have gone on to graduate school... Perhaps I should have anyway, but I chose to make him my first priority...This disease has clearly impacted a lot of people's lives but like Epoman so many find purposes, large and small.
Mom 3
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The Serenity Prayer
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
--Reinhold Niebuhr
I didn't realize there was a whole 3rd page before I posted (wow going to sleep at a normal time made me miss a whole new page of posts??) But I just wanted to say that this post was perfect! Thank you! I really have to get this on my wall to remind me ;) Thx
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There are basically two types of people in the world.
Those with character and those without. Unfortunately the vast majority of the world falls into the latter classification. The few in the first group though understand that life goes beyond our diaphragm's ability to create a vacuum in our chest, and beyond our heart's ability to pump blood through our veins so that we can profuse. They understand that life goes way beyond that.
They also understand though, that we have sole responsibility over what we do in this life.
Disease isn't easy - nor is working around it to create a life that is suitable for you.
ESRD hasn't robbed me of my life, it has given me the rare chance to learn one of life's biggest, and most important lessons.
Can I for one minute get away from ME ME ME ME ME and look at what's around?
I am not the most important thing in my life - and anyone who disagrees with that statement falls into the latter category we discussed earlier.
My life is not defined by my ability to physically participate in it
it is not defined by how convenient my day to day actions are for ME and MY TIME
It is not about me...
in the end it is about others.
We all like to bitch and moan sometimes, and that's fine. We can't change how we feel about things - but we can (and should) be aware of how we react to those feelings, and how we choose to act on them.
This is not pointed at this exchange, but is a reminder to us all.
I am sorry to hear Rerun, that you lost your life because of all of this. I am sorry for the grief that you've been through, and continue to go through. I really am.
No big "but" coming either.
Remember, it's not about me and what I want to say - it's about whether or not I can get beyond myself long enough to hear what you're saying.
Sorry things have been tough for you, and I hope you'll choose to move forward in your life.
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There are basically two types of people in the world.
Those with character and those without. ...Remember, it's not about me and what I want to say - it's about whether or not I can get beyond myself long enough to hear what you're saying.
Sorry things have been tough for you, and I hope you'll choose to move forward in your life.
Everything you said is good advice.
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Thanks, I admit I had a bad day. Attended a funeral of an 18 year old girl and was asking God why he didn't just take me and leave Lauren alone.
My poem:
If you love something set it free,
If it comes back it is yours,
If it doesn't, track it down and kill it.
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My poem:
If you love something set it free,
If it comes back it is yours,
If it doesn't, track it down and kill it.
Thats a great poem Rerun ;D
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Im sorry that you are having a hard time rerun, so are most of us probably. That doesnt make it ok to make offensive comments about things you know nothing about.
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Not only is it "alright" to say what I feel, but that is what this forum is for. It is to tell the truth. And I'm not going to sit by on "ihatedislysis.com" and listen to why you are "thankful" to be on dialysis and how grateful you are because that is how you met your fiance . OMG that is just lame!
I'm not telling anyone how to feel, I'm just saying what "most people" probably thought when they read that post. That's all. I let a LOT of posts go and just gag and go on. But, I couldn't this time. :P
I've made a really nice friend of a 70 year old woman who can't drive anymore so I go get her and take her around. She is on dialysis. So, YES, I live in the present, but I am NO WAY thinking GOD gave me kidney failure so I could drive this old gal around. SHE could get a taxi and I could be flying somewhere to a meeting!
Don't EVER tell me not to say or do something. In doing so, you need to take your own advice.
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Not only is it "alright" to say what I feel, but that is what this forum is for. It is to tell the truth. And I'm not going to sit by on "ihatedislysis.com" and listen to why you are "thankful" to be on dialysis and how grateful you are because that is how you met your fiance . OMG that is just lame!
I'm not telling anyone how to feel, I'm just saying what "most people" probably thought when they read that post. That's all. I let a LOT of posts go and just gag and go on. But, I couldn't this time. :P
I've made a really nice friend of a 70 year old woman who can't drive anymore so I go get her and take her around. She is on dialysis. So, YES, I live in the present, but I am NO WAY thinking GOD gave me kidney failure so I could drive this old gal around. SHE could get a taxi and I could be flying somewhere to a meeting!
Don't EVER tell me not to say or do something. In doing so, you need to take your own advice.
Exactly! Even though I can understand how everyone feels, I have gotten the impression from Epoman that this is the perfect place to speak your mind and that no one should be able to say you can't say this or that! Everyone on dialysis feels like crap and things in our life are not exactly what anyone could be joyous about. I don't believe God gives ANYONE kidney disease. I was just trying to find the silver lining. But I am glad when I see that people can vent and speak their mind. It encourages me to open up and speak my mind even when others have tried to get me to change posts.
I still remember what Epoman said here:Yes! DO NOT EDIT your posts just to make another member happy.
It is important to remember, not everyone will agree with what you say or how you feel but who cares? You have every right to feel exactly how you feel! No one should invalidate your feelings! They are a natural result of your life as it is! And we all share in that life! That is why this forum brings us all together! That is why I am here! I don't feel alone here. Sure, at times I feel like I don't belong in the "inner circle of IHD" but still .. you guys understand the daily lives of any dialysis patient more than any of my friends or even my family!
I hope that people become more understanding of each of our moodiness and are more accepting of different posts which express any negativity in any way! After all ... it is normal with our lives. We shouldn't be made to feel bad for our feelings or our posts!
I know I am enjoying reading everything in how honestly it is written! We shouldn't have to recheck ourself. I think that is why I was originally against the spell check even though I must admit it helps me. This is a really good site and I would hope for more acceptance of people's posts even on their "down days".
I hope this makes sense .. I am lacking sleep right now ... :-[
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Don't back down Rerun. You are entitled to your opinion, and because this is a KIDNEY forum, your thoughts are no less valid than anyone elses. Yes, we should be thankful for the dialysis machine and to the guy who invented it, for without it we would be worm food. But, lets not pretend that given the choice we would all take this 'path' because we wouldn't. I would rather have a healthy kidney (just one would do, I am not greedy) and I would love a natural human hip made out of my own bone, instead of this metal thing that feels totally alien to me.
I agree though, that acceptance is the only way forward, as hard as it is. I haven't found true acceptance yet, but I hope I am getting there. There is no real alternative anyway.
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Don't back down Rerun. You are entitled to your opinion, and because this is a KIDNEY forum, your thoughts are no less valid than anyone elses. Yes, we should be thankful for the dialysis machine and to the guy who invented it, for without it we would be worm food. But, lets not pretend that given the choice we would all take this 'path' because we wouldn't. I would rather have a healthy kidney (just one would do, I am not greedy) and I would love a natural human hip made out of my own bone, instead of this metal thing that feels totally alien to me.
I agree though, that acceptance is the only way forward, as hard as it is. I haven't found true acceptance yet, but I hope I am getting there. There is no real alternative anyway.
At least Padster knows what I'm trying to say. :)
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Don't back down Rerun. You are entitled to your opinion, and because this is a KIDNEY forum, your thoughts are no less valid than anyone else's. Yes, we should be thankful for the dialysis machine and to the guy who invented it, for without it we would be worm food. But, lets not pretend that given the choice we would all take this 'path' because we wouldn't. I would rather have a healthy kidney (just one would do, I am not greedy) and I would love a natural human hip made out of my own bone, instead of this metal thing that feels totally alien to me.
I agree though, that acceptance is the only way forward, as hard as it is. I haven't found true acceptance yet, but I hope I am getting there. There is no real alternative anyway.
At least Padster knows what I'm trying to say. :)
I understand to, and he is right. You can say what ever you want in this forum, speak your mind, say how you feel. Of course I'd rather be a executive at a corporation, but I was just saying how running this site and helping others has given me a purpose in life (besides my family) that I have been lacking, I do not believe GOD gave me this disease, BUT I do believe EVERYTHING happens for a reason, even if it seems horrible at the time, for example Rerun, remember when I told you the story about how my wife got this WONDERFUL career AFTER and only because I broke both of my hips. Well I can honestly say it changed my life for the better, and I would break my hips all over again if it meant my wife would have this same career again.
Believe me rerun, I understand where you are coming from, but instead of me sitting around feeling sorry for myself like I had been for years, I said p*ck THIS, I'm starting a support site, I'm getting away from DUH-Vita, I'm doing daily hemo I want to live longer, and now I have completed 3 of my goals, now I have 3 new goals to look forward to on the horizon.
But like I have told others rerun, you do not have to defend yourself. SPEAK FROM THE HEART, positive OR negative. And never edit a post you created to please another member. :)
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Amen!!
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Rerun, I agree with you. I have felt they way you do. Dialysis and kidney failure suck. They suck big time. My life is not better because of dialysis, it is only longer.
Katherine
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I find what is harder than the dialysis is the people around me especially at work who don't understand and actually make things harder on me. If it was not for dialysis I would tell them they can shove this job and I would be in a job I was trained for in College instead of one with flexable hours that disrespects me.
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OMG can you get any more nasty? I dont even want to talk to any of you.
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Amber, who are you referring to??
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Amber, who are you referring to??
Yeah, who are you referring to?
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I am offended by everyone who has agreed that what rerun said to me was alright to say.
Rerun, if you don't want people telling you what to say or do, then I suggest you don't tell people what to say. Don't tell me not to settle, and don't tell me what I could and couldn't of done, or how to say things. Debate with me all you want, but I don't appreciate nasty comments about my private life. Telling me not to settle because I'm sick is a load of shit. This is not the first relationship Ive had, and I am more than ready to settle, sick or not. And FYI, he is a hunk to me, I don't give a rats what anyone else thinks. After all the things Ive been through with this illness, all of which is new to my fiance, I am glad he is still with me.
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I can agree with you amber, that rerun did get a little to offensive with some of her remarks and comments for my tastes. But I think im going to bow out of this one because I have a feeling major trouble is brewing and I am not getting caught in that crossfire.
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I am offended by everyone who has agreed that what rerun said to me was alright to say.
Rerun, if you don't want people telling you what to say or do, then I suggest you don't tell people what to say. Don't tell me not to settle, and don't tell me what I could and couldn't of done, or how to say things. Debate with me all you want, but I don't appreciate nasty comments about my private life. Telling me not to settle because I'm sick is a load of shit. This is not the first relationship Ive had, and I am more than ready to settle, sick or not. And FYI, he is a hunk to me, I don't give a rats what anyone else thinks. After all the things Ive been through with this illness, all of which is new to my fiance, I am glad he is still with me.
aMber_79,
I'm sure Rerun did not say those things to try to hurt you, rerun is not that way. As you are well aware emotions are lost in a text post on the internet. I was not condoning what she said, I was condoning her being allowed to express herself and as long as members do not get into a name calling flame war then it is ok. As you know we all have our good days and our bad days, well I think rerun was having one of those bad days.
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Had she of appologised in her next post that would of been ok, but she didnt, she went on to call me lame and dribble shit that isnt even correct. I never said I met my fiance because of dialysis, and even if I did, it doesnt give anyone any right to critisise me. I had a friend pass away recently also, he was 27. I understand how that makes you feel, but it doesnt mean you can go around shooting your mouth of at people. It doesnt help anyone here, nor yourself. We are all here to support each other, not put people down. By all means have a whinge, a rant, a vent, or whatever, just keep it friendly.
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Dialysis and kidney failure suck. They suck big time. My life is not better because of dialysis, it is only longer.
Katherine
This should be put on a bronze statue! :D (infact I'm going to change my signature line)
I've reread this entire thread. It wasn't just Amber. There were various references or inferences that kidney failure has brought about some good in life and a general cheeriness that makes me sicker than I already am.
Enough said on my part.
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I HATE DIALYSIS! No one in their right mind could love or even like dialysis. But I have to say this - my life is not just longer because of it, it is better. Last year this time, I was puffing and panting, even to get up from my couch to pick up the remote. When I was in school, I had to stand at the side of the stairs every 4 steps to recover. I was hiding how I felt from everyone, because I didn't want it to impact on how I was viewed. I need to work to see my daughter through college.
Then the day came when I could hide it no longer. My daughter (without a driver's permit) had to drive me to the hospital, where I was admitted with congestive heart failure and fluid on my lungs. After nearly two weeks in the hospital, I started dialysis, and now I am able to walk up briskly to my classroom. My admin at school had started treating me as fragile, but bit by bit I was given back nearly all my classes and was able to function well. I even got to teach a class this summer for supplementary students (some needed extra money - I will remember IHD when I get my check!).
When I think of the needles, my body cringes. When I think of the fact that I can no longer travel as I used to, it hurts. It is a horrible feeling that I am owing my existence to a machine. I hate dialysis, but, thank God for it. It has made my life better........ and longer.
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Excellent post Bajanne, and i thank God you are able to see your Grandson grow but i am sure no one is happier than he is to have you.....Although i have no kids, i do have a husband that loves me and 17 beautiful Godchildren that mean the world to me, i have a great family and i even have some friends (i thought i didnt) but they recently proved me wrong when i lost my beloved pet. That is all the more reason to not only fight for my life but to enjoy it to its fullest. If you tell me this is as good as it gets, then i will be not only happy, but satisfied.....
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Im terribly sorry our cheerfulness makes you sick. Stop feeling sorry for yourself and maybe you might be able to appreciate people trying to stay happy whilst living with a horrible illness. Dialysis is a horrible thing, but life will only be shorter if you bitch and moan about it.
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People are different. Optimism works for some people and pessimism works for others. Read an article on that recently, that pessimism has protective effects for people and it is not helpful to try to change pessimists into optimists. Both ways of looking at the world and at experience have different strengths and weaknesses.
And people get put on dialysis at different points. If you have reached the point of not being able to function and you feel it in every fiber of your body, and voila'-- dialysis makes you feel better--dialysis is perceived as a good thing in some ways. Gut reaction.
If you go on before you reach that stage (as I hope I will incidentally) and you go down hill ON DIALYSIS then dialysis is viewed as something completely awful. Or may be at least! Again a gut reaction.
That's my two cents worth on it, wading in where angels fear to tread! (But then I'm no angel... >:D)
Mom3
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I don't love dialysis but I'm sure glad that they have it. I happily go there 3x a week for 5 h each cuz I don't like the alternative. that 15 h a week is well worth my time.
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People are different. Optimism works for some people and pessimism works for others. Read an article on that recently, that pessimism has protective effects for people and it is not helpful to try to change pessimists into optimists. Both ways of looking at the world and at experience have different strengths and weaknesses.
Mom3
I am so glad you wrote that. I never quite thought of it that way. That means we have space for both pessimists and optimists on this website! Wonderful!
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I HATE DIALYSIS! No one in their right mind could love or even like dialysis. But I have to say this - my life is not just longer because of it, it is better. Last year this time, I was puffing and panting, even to get up from my couch to pick up the remote. When I was in school, I had to stand at the side of the stairs every 4 steps to recover. I was hiding how I felt from everyone, because I didn't want it to impact on how I was viewed. I need to work to see my daughter through college.
Then the day came when I could hide it no longer. My daughter (without a driver's permit) had to drive me to the hospital, where I was admitted with congestive heart failure and fluid on my lungs. After nearly two weeks in the hospital, I started dialysis, and now I am able to walk up briskly to my classroom. My admin at school had started treating me as fragile, but bit by bit I was given back nearly all my classes and was able to function well. I even got to teach a class this summer for supplementary students (some needed extra money - I will remember IHD when I get my check!).
When I think of the needles, my body cringes. When I think of the fact that I can no longer travel as I used to, it hurts. It is a horrible feeling that I am owing my existence to a machine. I hate dialysis, but, thank God for it. It has made my life better........ and longer.
EXACTLY!! I had to stop every single block to catch my breath when I was biking to the drugstore near the end before I finally started dialysis. I am amazed I was able to work my 12-hr position as long as I was able to!! They kept asking "why are you so slow? You never used to work this slow!" and I was trying my best. They didn't realize it was health related. They were seeing me as a bad worker. I had to give up that job just as I was offered the promotion I was waiting 9 years for (trust me I cried my heart out!!!) so YES I HATE DIALYSIS!!!!!!!!
So when I say I am grateful and believe everything happens for a reason .. I am ONLY trying to find the silver lining of that cloud that is constantly raining on me!!! Please don't feel that I am saying, "Thank God for dialysis!" even though it is the ONLY thing keeping me alive! No! I am just trying to find the good in the bad!
But yes, you can voice your annoyace at people saying "if it wasn't for dialysis I would not have met my boyfriend" (That was ME by the way). Go ahead! But please, understand that I only am looking for the good.