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Cant take it anymore

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  • Cant take it anymore

    Im 33 and was diagnosed with end stage kidney failure. One minute im this strong hard working man who everyone relies on for about everything, the next, i was stuck in a hospital for over a month to come home and rely on others. I get up every morning feeling my fistula making sure it still has a thrill, this is my new normal. I look at my arm everyday and it makes me depressed seeing all the needle marks and scars. I walk around with this heavy weight over my shoulders. I think to myself why me? Ive tried to live a healthy life and still this happens to me. There days i can cope with this, but then i go to the store after dialysis and someone asks why my arm is all bandage up and when i tell them why, the look on their faces just darken my days. I get the same responses all the time "oh your so young" "how did that happen? " and i cant even give a explanation. It sucks because i cant live my life how i truly want to. I gotta schedule my life around this awful machine (dialysis). I just came back from Disney world with my wife and daughter and before i even booked my hotel and theme park tickets, i had to find a dialysis center close by my hotel. I cant just jump up and decide to go anywhere. My friends and family would say lets go here for the weekend or take a trip and i gotta see if it corresponds with my treatment days. I hate having this disease hanging over me, im on a kidney transplant list but i feel like im never gona get called. I just cant take it anymore....

  • #2
    I can really sympathize with where you are coming from. I'm 30 and was diagnosed with esrd at age 26. I know how much it sucks to be young with this disease.I know I feel very isolated and alone some days, especially when everyone in the dialysis center is over 70. I'm currently on pertoniel dialysis and have found that it works much better with my lifestyle. I still have to plan any trip I'm going to take, and I can't spend the night with friends if I wanted to, but I still prefer it to hemodialysis. Is that an option for you? It makes travel a tiny bit easier, and is easier to work around an active lifestyle. This disease can be is ridiculously depressing. I'd encourage you to talk to your dr or social worker about how difficult an adjustment this is. They may have some resources or ideas to help you out. There may even be a dialysis support group in your area. At any rate, I applaud you for posting on this forum. Talking about how you feel about your disease can be difficult, but I'm happy that you feel you can share it here. I wish I had more eloquent words to offer, but I want to tell you you hang in there. I have hope for you.

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    • #3
      I understand! Im 34, and will have been on dialysis for 3 years this coming may. I love to travel, and now I just don't get to unless it is to a dr. appointment. I had to get a nephrectomy to meet requirements for transplant list, and long story short am still not on list due to medication I had to take to save my sight after complications from nephrectomy...but that medication damaged the nerves in my legs so that now I have afo braces and a cane. ESRD is a hard thing to have to deal with. I have found that the best thing I can do to help myself from being so down is to try to keep my attitude and anger in check. The more miserable I let myself feel, the worse I end up feeling physically. I have to remind myself daily that things could always be worse! Hope things improve for you. Just know you are definitely not alone

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      • #4
        We are all basically in the same situation - and nothing I did caused my kidney disease. I used to just get up and go - can't do that any more....but to me, dealing with all this nonsense and trying to keep positive is the only way. I wouldn't want to be 6 feet under just b'cuz I have ESRD and didn't opt to do something about it. think of one positive thing a day - I usually joke around with the techs and nurses - and that keeps me going. I've also decided t say hello and goodbye to all the patients when they come in and when I leave. Dialysis sucks, that is true but it is giving me the opportunity to see another sunrise.

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        • #5
          I had reached the age of 65 and retired from my job of 38 years and thought about doing all kinds of things with all of my free time, About a year into retirement my kidney guy informs me that I was on the brink of Stage V and dialysis would then be required. So, I have doing dialysis for 13 months now and, yeah, it can be a drag. At least I can still drive but getting out of the car is getting difficult due to arthritis in my spine so I have the walker contraption to take everywhere. Nowadays my problem, ironically, is low blood pressure following treatment such that I drink ice water until the top number breaks 100 and I take a pill that raises blood pressure too boot. For some 40 years I had been prescribed various meds to lower blood pressure some of which I now know were damaging my kidneys. That and the contrast dyes used for imaging like those in nuclear medicine and MRI's.

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          • #6
            I know how you feel I"M 34, but this my 7th year on dialysis , I got on dialysis when I was 27. Three day a week regiment is hard I have to admit I miss a lot of Wednesdays and just go Mondays and Fridays, when you been on the machine 7 years 3 day a week regiment gets kinda old. Stay strong!

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            • #7
              Originally posted by joey1948 View Post
              I had reached the age of 65 and retired from my job of 38 years and thought about doing all kinds of things with all of my free time, About a year into retirement my kidney guy informs me that I was on the brink of Stage V and dialysis would then be required. So, I have doing dialysis for 13 months now and, yeah, it can be a drag. At least I can still drive but getting out of the car is getting difficult due to arthritis in my spine so I have the walker contraption to take everywhere. Nowadays my problem, ironically, is low blood pressure following treatment such that I drink ice water until the top number breaks 100 and I take a pill that raises blood pressure too boot. For some 40 years I had been prescribed various meds to lower blood pressure some of which I now know were damaging my kidneys. That and the contrast dyes used for imaging like those in nuclear medicine and MRI's.

              I had some of the same experience. I retired last May at 67. I had looked forward to it, but I went on dialysis the previous
              March. Si it's been a year now. I try to keep a positive attitude and keep busy, but I really miss travel. In addition, I was just diagnosed with multiple myeloma, and I am being treated for that too.

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              • #8
                We all hate it. You are young and a transplant is a good option for you. The way I look at it, I an alive thanks to dialysis. And, I feel much better overall than the two year decline I experienced before treatment. I am learning to manage my life, family and job around dialysis. I have found that a Tuesday Thursday Saturday beginning at three works best for me. I don't really miss much work, I get home for dinner and then a good nights sleep. I also started going to a gym three days a week and it has profoundly helped me. That I can exercise and improve my strength and agility is motivating.

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                • #9
                  I was diagnosed March of 2016 with Multiple Myeloma and Amyloidosis started chemo in April 2016, came close to dyeing with kidney failure May 18th 2016, been on dialysis ever since, this has been the hardest thing I have ever been through, I was an over the road driver until I was diagnosed, this disease is life changing, I've learned to cope by keeping a good attitude, I've literally lost most of my family's support, I think mainly because they are not willing to educate themselves of this disease, I absolutely love my nurses and techs at Davita in Alliance, oh. Without them and my wife I wouldn't be here today.

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                  • #10
                    I was diagnosed March of 2016 with Multiple Myeloma and Amyloidosis started chemo in April 2016, came close to dyeing with kidney failure May 18th 2016, been on dialysis ever since, this has been the hardest thing I have ever been through, I was an over the road driver until I was diagnosed, this disease is life changing, I've learned to cope by keeping a good attitude, I've literally lost most of my family's support, I think mainly because they are not willing to educate themselves of this disease, I absolutely love my nurses and techs at Davita in Alliance, oh. Without them and my wife I wouldn't be here today.

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                    • #11
                      I sympathize with u totally, I have been on dialysis since I was 14, I am 42 now. Some days are harder than others but I soon came to realize that I can't let the disease run my life. I have had 2 kidney transplants failures and I am waiting on my 3rd, despite the crap the Dr.s tell me about me chances of another transplant Is slim to none. Even If there is a 1%chance I will stay on the lists because it's not a 0% chance and they keep me on lists. I am on peritoneal dialysis and travel a lot and don't have to schedule my life around a center but I do find center that Does PD just in case I run into problems. I realize that I can't let the disease run my life. But it's hard sometimes because sometimes I just don't want to set up my machine or do my vitals. I just get so tired of the same crap day after day. Being positive all the time is impossible and you just got to realize that you are human and it's ok to have those feelings. And it takes a toll on people close to you also so communicate those feeling too because it sucks to feel like a burden and u would be surprised at how expressing those feelings helps you and them. our bodies are just out of wack too. Seeing a psychiatrist helps too. Bipolar is common in ESRD. Love yourself with disease and accept that your old life is gone and you gotta write a new chapter in life that includes ESRD. It's going to be ok. I went to finished high school and went to college and I currently work part time. I tried working full time but my body said HELL NO!!!! lol!!! That's something I just had to accept but at least I tried......without my family & real friends I wouldn't be as positive about life as I am. It's a hard life being a sicko........but just take it one day at a time and you will be okay. Let the people who want to be there for you and help you, do that....it doesn't make you weak or incapable, it makes you stronger in a way because it takes some of the weight u feel off of your shoulders. I hope my story helps u a little bit just by letting you know that you are not alone. Your in my prayers 🤡😺🙏🏼

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                      • #12
                        Originally posted by Mikenicholas View Post
                        I was diagnosed March of 2016 with Multiple Myeloma and Amyloidosis started chemo in April 2016, came close to dyeing with kidney failure May 18th 2016, been on dialysis ever since, this has been the hardest thing I have ever been through, I was an over the road driver until I was diagnosed, this disease is life changing, I've learned to cope by keeping a good attitude, I've literally lost most of my family's support, I think mainly because they are not willing to educate themselves of this disease, I absolutely love my nurses and techs at Davita in Alliance, oh. Without them and my wife I wouldn't be here today.
                        Hi Mikenicholas, thank you for reaching out here! Have you been able to meet with a local social worker? They can often provide some helpful ways to cope with the many challenges and overwhelming feelings you're experiencing.

                        We're happy to hear that you love your local center!

                        Please don't hesitate to reach out if you have any future questions with myDaVita. I hope you have a nice weekend!

                        Kelsey

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                        • #13
                          It can be tough to have something beyond your control change your life so drastically no matter your age. I'm 38 now. 3 1/2 yrs ago I was totally fine and then found myself in the ICU because of pneumonia and severe dehydration. Then get told that my kidneys have shut down and I now have to do dialysis. They had been hopeful in the beginning my kidney function might come back, but eventually it became apparent that was not going to happen. I was off work for 2 1/2 months, but thankfully was able to go back. I had been doing in center hemodialysis and have had to rearrange my in center times to better accommodate work. It's been tough because I really haven't felt like I've had a life. I spend my time working and going to dialysis. Monday, Wednesday and Saturday were my treatment dates. Mondays and Wednesdays I wouldn't get home until 9:00pm or later because I would go to work all day and then dialysis in the evenings. I really had no weekend as I had treatment on Saturdays. I try to stay positive with everything because it such a drastic life change, but some days it is really tough. I too have had people comment on my scars and arm, but you always get that "oh I'm sorry" look. I have to remind myself that I'm still alive, I'm still able to work and still able to find time to do things I enjoy (although it is hard having to rearrange everything sometimes). I am switching to PD (start my training Monday) so am hoping with being on that, that will allow me to have more freedom with work and personal time. You have ups and downs with dialysis. It's just reminding yourself you're still alive and you have great things to live for!

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                          • #14
                            Hi abrennan78, thank you for sharing your positive attitude with others here on myDaVita! We're wishing you all the best.

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                            • #15
                              I don't hate dialysis. Just another part of life. Been on about 6 years and go to a center for treatment. My life is normal for 4 days and I go 3 times a week. Look around you and see folks that have it a lot worse. Folks with no legs, folks that are blind, etc etc. I've got it great! So do you my dear . . . .

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