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I've not wanted to post for some time now because I felt bad about being really depressed and hating dialysis. I didn't want to bring everyone else down, since most of the responses to the posts are "you're doing great" or "keep up the good work" or "you're an inspiration to us all".
Even though my Neph has lowered my time to 2 1/2 hours, I still think about stopping every day. I don't have the opportunity to have a transplant so I only have dialysis to look forward to. I have many other heath problems and after 40 years of constantly being ill, I'm tired. Dialysis seems to be the last straw. I know I couldn't take anything else.
My husband thinks I'm so strong, but its all taking a toll. I take pain meds every day and muscle relaxers, in addition to all the other meds I take orally and get through dialysis. It would be so easy to take too many and just end this, but I keep going and trying one more day.
I think it is a little hard for someone who "only" has kidney problems to really understand what it is like for someone who has many other problems to deal with on top of dialysis. Dialysis is a big thing for everyone with fluid and diet restrictions, and it deals a different hand to everyone. No one reacts the same. Your life now revolves around treatments, whether in-center or at home, no matter how you try to ignore it.
I'm sorry if this is really depressing and I don't want to scare anyone who has not started yet or just starting. I'm still a rookie having started October 31, 2007, but I just can't get my head around all of this. I don't just sit home, either. I've started back to work on a part-time basis and still drive myself wherever I want to go. But the bottom line is - I don't want to do this!
dogmom, I understand how you're feeling. I am now 56 years old. At age 23 a 14 year old boy rode his bicycle into the road in front of me. He died. I've had 10 years of infertility, 4 years of fertility drugs (got one child) had 3 heart attacks, triple by-pass surgery, (which they said may give me 5 more years--I don't accept that! )which required 4 days of continuous dialysis following it, I have pulmonary hypertension and mitral regurgitaion due to having sleep apnea for a long time before being diagnosed last year, I had an "on the verge of cancer" baseball size tumor on my ovary with surgery that removed uterus and both ovaries, diabetes since 1986 (had gestational diabetes in 1979), in 2000 a medicine put me in the hospital with kidney failure which improved on its own, I have neuropathy in my feet, lower legs, and hands, had a broken foot bone which put me in casts for 9 months, charcot arthropathy in left foot which put me in a wheelchair and cast for 9 months, now charcot in my right foot--in the wheelchair again. I'm hoping to be out of it by Christmas. Last March I took antibiotics for a chronic sinus infection and ended up in the hospital with chronic kidney failure. I was on dialysis from March 27th through June 3rd. Once again my kidneys bounced back. Thank You, Lord.
As you can see, I know what it is to "have other problems". Through most of the above (except the accident and the dialysis in March), I kept a smile on my face, kept my faith that things would get better, joked (better than crying), stayed happy and content. When the dialysis was required I was fine until I had to go to the dialysis center. That first day I felt destroyed. For two weeks I was at the lowest point in my life. It was not the procedure so much (though I hated the warm blood lines touching me) but the actual site with all the incapacitated people. It broke my heart. It was depressing to me Most were older and "not really there". I couldn't bear to be a part of it though the employees did all they could to make the time pleasant and comfortable. Everyone always thought I was very strong also but I suddenly found myself as helpless as a baby.
Thank God I had friends who kept after me, bringing me preaching/teaching tapes, music cds, encouraging me, phoning, stopping by. I was always taught that depression was the highest form of conceit as the depressed person is constantly thinking of self. I realize some forms are caused by chemical imbalances, but mine was definitely because of thinking of myself. I, too, did not WANT to do dialysis. It took a couple of weeks but with their prayers, ministry to me, and my prayers, I came up out of that deep hole. Did I suddenly like dialysis? No, but I was better able to deal with it when my thinking was where it should be.
Know that you are not alone. People love and care for you. There are those of us that have had what seems to be more than our share of troubles. But we can still enjoy life, love our families, enjoy time with them, make friendships, etc. It IS still worth it. God is in control and He WILL help us through rough times when we turn to Him.
Congratulations on getting your dialysis time cut to 2 1/2 hours! That's great. I had been started on 4 then it was reduced to 3 before being stopped. My GFR is holding at 17% right now but I am BELIEVING it to get even better.
People like you and me, that do have a problem with in-center treatment, need to check out home hemo or PD. I'm thinking that PD would disrupt my life the least. We'll see. Have you checked into other forms of treatment?
Take care and think good thoughts!
Dogmom, I do know how you feel. I've been there and have come out the other side as Cassie has. But the trip was not pleasant or easy and I do not blame you for feeling the way you do. Dialysis is among the hardest things anyone ever has to do. It is even harder since you have been told there is no possibility of a transplant. I realize that some people truly are disqualified from having transplants, but have you asked recently? Every few months the criteria to qualify for a transplant change because of changes in the practice of medicine and people who were once disqualified become eligible. You have my sympathies and my prayers in your journey. Please do not be afraid to come here to talk. We need to be supportive of those who are having trouble coping as well as of those who are able to accept their conditions.
To the stars through difficulty!
It has been a while since my last post and unfortunately things have'nt gotten better, my fistula clotted so I had to get a graft (thank God I avoided a catheter). As bad as I find dialysis not having anybody to talk to who understands is frustrating. Family and friends are just glad I am alive so my feelings about how that is achieved are meaningless, they dismiss my complaints with "it's keeping you alive". It's hard to look forward to a transplant that may only give me 10-15yrs and then more dialysis. I would like to see my sons grow up and have kids of their own but 20yrs of this (the thought of 20yrs of this) is I think more than I can take. I think thats the problem this situation is for the rest of your life if I were an old man I could take it better the old guys at the center laugh and smile and I just resent them for their positve attitude, they lived a full life and I was just getting to the good part of mine. I have never been a feel soory for myself kind of guy but this is tough. I can't smile it away, I keep fighting with no end in site.
It has been a while since my last post and unfortunately things have'nt gotten better, my fistula clotted so I had to get a graft (thank God I avoided a catheter). As bad as I find dialysis not having anybody to talk to who understands is frustrating. Family and friends are just glad I am alive so my feelings about how that is achieved are meaningless, they dismiss my complaints with "it's keeping you alive". It's hard to look forward to a transplant that may only give me 10-15yrs and then back to more dialysis. I would like to see my sons grow up and have kids of their own, but 20yrs of this (the thought of 20yrs of this) is I think more than I can take. I think that's the problem, this situation is for the rest of your life, if I were an old man I could take it better. The old guys at the center laugh and smile and I just resent them for their positve attitudes, they lived a full life and I was just getting to the good part of mine. I have never been a feel sorry for myself kind of guy but this is tough. I can't smile it away, I keep fighting with no end in site.
Yeah, and you guys all want to know why I am DELAYING?? It's posts like this that scare the crap out of me. Sometimes I think it's better to wait. If dialysis isn't doing anything for these people, why should I start?
I had hope going into this soon and when I read these posts, I simply get a headache, log out and want to go home and crawl under my bed.
Hope fades on the premise that there is no faith in the system.
So sorry you all hate dialysis. My husband would sure be happy to be back on dialysis. He passed away due to complications. You don't have to take an overdose of pills - stop dialysis and it will be over in a few weeks.
Ah, c'mon now...cheer up! Nearly all my life without kidneys...it is a struggle but you have to be a fighter, not a quitter. There's so much in life to enjoy...regardless of the pain and suffering there's so much more to enjoy. Believe in yourself, its not the end. You just gotta accept and adjust, takes time..
Originally Posted by bangingbuck
Every person, every care and every situation is different.
While Bob was still in the hospital after his transplant, there was a lady there who has had her kidney 28 years!! She was there for aother reason, not related to that kidney at all.
So who knows? you may get far longer than 10-15 years.
I know quite a few people who have been on dialysis over 30 years.
Whatever does not kill me makes me stronger...Neitzsche