I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: frankenarm on November 14, 2008, 10:11:08 PM
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Hi ya'll. My very lovely 17yr old sister is writing a paper for her health class about dialysis and had thought to include some commentary from current (or past) dialysis patients. Shes a good kid and knows to go right to the source for information so I told her I would help her out a bit.
She would like to know: How does dialysis affect your everyday life, in positive or negative ways?
Also: How has it changed your life or your views on life?
Any other insight would also be greatly appreciated.
It would be awesome if some people were on to give advice and answers, and I totally understand if everyone but I have something better to do on a friday night than sit on the computer!
THANK YOU!!!!! :thx; :cheer: :thx;
:waving;
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I'm on here on a Friday night.... that should tell you something.
I feel that my life was changed by dialysis because I lost kidney function at such a young age....24. I was just married and getting started with a career. I was very lucky and was only on dialysis for 9 months before receiving "The Gift of Life". I had my transplant for 17 wonderful years and moved up in my career to an Agricultural Specialist with the Department of Agriculture. So, when my transplant failed at age 43(ish) it was very hard. I was not scared of the "unknown" I was scared of the "known". I knew what dialysis was like. How tired, weak, exhausted .....
I was told that it had improved in 20 years and it did somewhat. I still could not work 40+ hours a week and travel on the spur of the moment which my job required. I had to take a disability and go on Social Security. This is about 40% of what I was making. Huge financial difference.
Now I live in a dumpy apartment with my dog. I blame dialysis. I know what I was doing before my transplant failed. I can still function and help people who are worse off then me. As long as I can still be a productive citizen then it is worth it. But, it was a big fall from where I was.
I guess that makes me bitter, but I do the Nocturnal dialysis and am feeling better and would like to find a part-time job.
Hope this helps..... :waving;
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Hold on?? A teenager wanting to do homework on a Friday night????? You need to ask yourself just what has happened and where are the aliens that have abducted her and replaced her with a clone??? :)
OK gee this is an interesting topic and I am not sure how to answer in a concise way.
The positive ways dialysis has affected my life is that it allows me to keep living it - and that is such an important thing to remember with all the stress and hassle we can go through as patients. I'd also like to think that a positive effect was that yes, I do feel my outlook on life and attitudes have changed somewhat. I am reminded how short, fragile and precious life can be and that life IS too short.. so just do it IS a reasonable mantra to take... so grab hold of it and do what you can... and enjoy it!! Don't sweat the small things either.... I mean in times past I might get something like a screw up with the phone bill or whatever get me upset but you know these things can get sorted out in due course and it's not worth the energy waste getting upset and angry. Just deal... move on.
I also feel I have become more generous and giving as a result. Maybe it has been involvement in the whole transplant process (well still waiting, but obviously with the understanding of what a special gift a donation - live or deceased - can be) and I often see other examples of generosity and spirit of giving in the hospital environment - from staff, patients and family members.
As for negative things well gee that could go on like a long book about the not so good things about dialysis, like the needles, the boredom of 5 hour sessions, the problems that crop up with the access, controlling meds, labs, the renal diet & specially fluid restrictions and all that fun stuff... but I try to take it all with a dose of optimism and remind myself why I'm going through it all. Yes, sometimes the whole thing can get me down and there's definitely an aspect of depression... specially in relation to waiting for "the call" which may come tomorrow or in ten years (or not at all) and then the added question marks of "if I get the call... will it work out? And if it does, how long for?" but given that I don't know when and what I try to focus on where I am at now with the odd plans brewing in the back of my mind for that time down the track when I can be freed, for however long, of the burden of dialysis and get to live life a little more, travel again, and have more energy to focus on the important things in life.
I try to see dialysis as that process that helps me to live but it does NOT control my life!!!! And my life is NOT centered around dialysis or kidney disease. Obviously it affects my life in various ways and places restrictions on it, but it's not going to stop me putting my energy into the things that matter to me. So I really actually enjoy (!) going to work, spending time with my friends, supporting my football team, spending quality time with my kitty and flirting outrageously on IHD!!! hehehe These are the things that matter... not some machine, needles, labs etc....
Hope that helps a little. If there are follow up questions - just ask!
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How does dialysis affect your everyday life, in positive or negative ways?
Dialysis has affected my life positively in one way only- I am still alive.
The negative- I have to plan my life around it.
Also: How has it changed your life or your views on life? I am a little less patient with adults than I used to be.
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I had my first Dialysis treatment when I was twelve years old so I've been dealing with this before and after kidney transplants my entire life.
The most positive aspect is that I'm still around to annoy and bewilder the human race.
It is also good for weight loss. I was up around 145 lbs. and really doughy but now, because I have a very rare appetite, I'm down around 125.
Also, if you have a nurse fetish, it caters to that on a weekly basis.
The negatives are vast and frightening.
I must reserve all my energy just to get up in the morning to go to work. Anything left over (which is rare) is used to deal with treatment.
My dating life has evaporated because women see me as damaged goods. According to them, since they don't fully understand Dialysis, they believe my days are numbered and there's no future with me.
To fight the nightly pain I experience, I've found that over time I don't feel anything. Happiness, joy, elation and are all simply just words spoken by those who take their health for granted.
I'm now a barely conscious zombie schleping though my workday because I have nothing better to do.
I'm in obligatory purgatory and nothing can cease my sentence.
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Positive for me is being able to continue living as long as I feel like I am liviing some sort of quality life.
Positive is having IHD to share feelings with and try to help each other.
Negatives:
Tired..sometimes all the time...rare days of not being tired are few and precious.
Aching
Having to plan around dialysis
Not being able to do something on the spur of the moment like I used to.
People not understanding the above.
Having to deal with a disability insurance company who is trying to turn me into a prisoner...they do not understand we already feel like prisoners and are not helping at all.
Too tired to cook or eat most days but have to keep pushing on.
I get so frustrated about people (ignorant) ones like Stacy said women think of him as "damaged goods"........that is horrible....I cannot imagine people thinking like that.
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I had my first Dialysis treatment when I was twelve years old so I've been dealing with this before and after kidney transplants my entire life.
The most positive aspect is that I'm still around to annoy and bewilder the human race.
It is also good for weight loss. I was up around 145 lbs. and really doughy but now, because I have a very rare appetite, I'm down around 125.
Also, if you have a nurse fetish, it caters to that on a weekly basis.
The negatives are vast and frightening.
I must reserve all my energy just to get up in the morning to go to work. Anything left over (which is rare) is used to deal with treatment.
My dating life has evaporated because women see me as damaged goods. According to them, since they don't fully understand Dialysis, they believe my days are numbered and there's no future with me.
To fight the nightly pain I experience, I've found that over time I don't feel anything. Happiness, joy, elation and are all simply just words spoken by those who take their health for granted.
I'm now a barely conscious zombie schleping though my workday because I have nothing better to do.
I'm in obligatory purgatory and nothing can cease my sentence.
Stacy..... I think you need a hug. :cuddle; So I am sending you one across the ocean. :cuddle;
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I'm with Wattle, Stacy. I am also sending you a huge hug. My kidney problem is hereditary and I have numerous family members with the disease. I have seen many of them made happy by finding a terrific partner who could not have cared less about their health issues. I have known about impending dialysis since I was 21 and I have told every partner I have had since then that dialysis was inevitable. Not one saw it as an issue and they saw what was involved by seeing others in my family on dialysis. I don't know you at all but I do know RichardM and I think anyone who had him in their lives would be the luckiest girl in the world. There is a nice girl out there waiting for you. You just wait and see. xxx Sorry for getting off the topic of this thread frankenarm. xx
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For me the negatives are huge since dialysis represents a long, sinuous life detour without adequate road signs or even the assurance that I will ever find the real highway again. I was born with a strong stubborn sense of optimism that is constantly tested by this illness and my need for adventure is not at all happy with the routine imposed by treatment.
Having said that, my character has certainly been tested by ESRD and I've discovered in myself a huge well of compassion that I may never have known about if my life had been lived in the way I had planned. I've been surprised by how lucky I feel, in spite of the lousy hand I've been dealt, and by how protective I feel towards others who struggle with anything in their lives. I am more tolerant, less judgmental, kinder, less superficial, more light-hearted, less earnest and uptight and I feel very at peace with how I am in the world. I am not religious in any conventional way and yet I feel close to the guiding principles of all the major religions which call upon us to be the best we can, particularly in the sense of how we treat one another. Buddhist philosophy, as exemplified by the Dalai Lama, speaks strongly to me and ESRD, more than anything has required me to live wholeheartedly in the present. Some quotes of the Dalai Lama that are particularly meaningful to me.
"My religion is very simple. My religion is kindness"
"Be kind whenever possible. It is always possible"
"If you want others to be happy, practice compassion. If you want to be happy, practice compassion".
"Love and compassion are necessities, not luxuries. Without them humanity cannot survive".
"We can never obtain peace in the outer world until we make peace with ourselves".
PS. Stacy, I'm sending you hugs too and I fully agree with Lucinda. Those women who see you as damaged goods have not seen you at all.
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I am speaking for my son Dustin who was on dialysis 16 mths before he passed.
The positive; it kept him ALIVE!
The Negative; migraines, high bp, vomiting, diarrhea, anemia, etc. The foods you need to eat and the foods you need to avoid. The fluids you can drink and the amount.
Dustin did a lot of soul searching and became a more compassionate person. He wanted to live and get that Gift Of Life. He became an advocate to his friends on the importance of being aware of symptoms of kidney disease. He lived to enjoy life to the fullest and not sweat the small stuff.
Lori/Indiana
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Hey!
Thank you so much everyone! You guys were super helpful and my sister got a perfect (plus extra credit for a mini presentation) score on her paper! Sorry for the delay. The holiday week was crazy for me.
Thank you thank you thank you thank you!
:thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx;