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    « Dialysis and CKD Blog Report March 29 | Main | CKD links and resources »

    March 29, 2008

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    Bill Peckham

    I can't say that there have been system wide advances in the last 15 years, there has been change but the care a person receives still, to a great degree, depends on their zip code.

    The system we have today works best for people who engage with their care, and who can find a good provider/physician to work with.

    For anyone facing severe kidney disease I recommend reading HELP, I NEED DIALYSIS! How to have a good future with kidney disease which is available through Amazon or here http://lifeoptions.org/help_book

    Diet (and exercise) can improve outcomes at every stage of kidney disease, the book can walk you through how. I have a few links for dietary and recipie informaiton here

    Blake

    Try and find a good person out there to live life with and be strong. Pray and have faith. We all go through a lot. Some more than others.

    Diana  body

    Hello my name is Diana I have daughter who's been on dialysis since she was 11 now she's 31 she has no kidneys and she does the dialysis from her liver.i want to know how long can a liver survive from a person who does dialysis from their liver.she's been in out the hospital now she's back in because where she does her treatment is bleeding and her doctor change her catheter but she still bleeds from there ... is this bad?

    PNL

    Expected dialysis lifespan?

    I started dialysis May 1st 1973 (22 yrs old) and had a transplant (1987 thru 2002) and am currently on dialysis. Watch your diet (eat the same things) to keep a good balance on lab values and watch your fluids. Do some exercise (walking, swimming & light weights) and keep your mind active having a positive attitude.
    That will give you a good chance of living long with CKD and don't worry about statistics.

    Misty

    Hi Darren. I just wanted you to know I know ur pain. I have been with my boyfriend for 3 years. When I met him he was already on dialysis. He was 33and suffered kidney failure in his 20's. he was Doing his dialysis in Hosp 3 times a week for 4 hours. He received a transplant which also failed. When I met him he still had the failed kidney and it became problematic. He had surgery to have it removed. After years of trying to convince him to do home hemodialysis he finally Agreed since I was now in the picture to help him ( his parents had both passed before any of this happened)
    He is now on the list again for a transplant. It may be a long wait As he is now highly sensitiZed and will b harder to find a match.
    I can say he is doing so well at home. He doesn't really eat as healthy as he should and drinks more water than i feel comfortble with but the drs tell me to cut him some slack cuz his blood work has been perfect. He now wishes he had agreed to home dialise sooner as he's so comfortable with it now. I used to help him In the beginning but now he does it all himself. Everything And never complains. Yes we have has our hard times with this and yes, sometimes he feels bad for me the way u do for your spouse but we are in this together and with both of us knowing this helps us to communicate and understand each other better. I know I love him and I know he loves me. We both just live life as notmally as possible and try to enjoy the life we have together. Yes it's tough. And it's hard when u think about the what ifs. But we try to remember that we have each other now and that's what's important.
    Now another thing that caught my attention with ur comment.
    Ivf. We did that also. At first it started out cuz of issues with me. Blocked tubes that ended up being removed for ivf. During the process we discovered hubby's counts were Terrible. So terrible we doubted it would work. We did it anyway and added icsi to the mix. We now have a beautiful healthy 8 month daughter. Believe me. We don't have money. We r on the Lower scale of life but we scrounged. We r suffering for it now but it was all so worth it and I wouldn't change a thing (I mean the ivf process and money issueS)
    Please. Keep ur chin up And stay positive and focused. If ur spouse truly loves you she will be there for you.
    I wouldn't even think of leaving my bf because of his illness. He needs me and I need him. We r just in a relationship that requires a little more dedication parience an understanding.
    Praying ivf works for u.
    Once it does eveything u are going through will all seem worth it.
    I watch my boyfriend everyday with our daughter And see how happy she makes him and thank god all the time for allowing me to give him that.
    Since she has arrived dialysis has not really been a conversation we have very often. He's content. I'm content. Although I know we both still think about it a lot we choose to overcome the sadness and enjoy what we have now. Praying the same happens for u.

    Sean

    I am a teacher and one of my students is on dialysis three days a week, in desperate need of a kidney. I am trying to reach the center to be tested as a possible donor, but it seems difficult to get in touch.
    Realistically, what is the chance to be a donor if you are not related at all?

    MARY SMITH

    My husband is 70 yrs old has diabetes and weighs 270 pounds he’s been on dialysis for 2 and 1 2 yrs, he takes his binders pretty regular, but due to a stroke 3 yrs ago he doesn’t get much exercise; dialysis really drains him . His urine output is maybe 8 ozs a week he worries about his life expectancy and so do I. Would like to know what to expect
    .

    Lyric Abrams

    I'm 31 will be 32 in April and it will make 3 years in April that my life has completely changed for the worst I'm a mother of 5 and a wife I was beautiful before this Nightmare now I'm 125 ibs I use to be 150 and when I was diagnose with CkD I lost 40ibs in 2 months last year I was 105 my marriage is in the dumbs because my husband can't stand the way I look now and how skinny I got. I hate myself now I have no confidence the way I use to, I take a millions pills a day I look at my old pic and can't believe it's me.. My youngest daughter asked me who was that in the pic she didn't even know it was me she's 7 I've been sick since she was 4 that broke my heart. I can't work because of my Mon We'd Fri dialysis (job) that I don't get paid for. On top of that I'm highly Sensitized so No Kidney for me which means I'll be dead soon and no longer a burden on my husband & Family oh and I won't be able to see my children graduate get married or have children yay Dialysis is so fun.. I say screw the doctors that are making healthy people sick so they can get more money out of us I was healthy before This and out of no where I have end stage renal disease with in 2 months there's something wrong with that picture

    cecille veloso

    My husband is 76 years old - type 2 diabetic, heart problems. His creatinine level went to 2.6. Can anyone please tell me what kind of diet he has to be in. right now, he is also on Warfarin - so greens are off except for iceberg lettuce, string beans, etc. I have been carefully monitoring his potassium and water intake. However, with 2.6 level of creatinine, I have to be extra careful with his diet. I tried to google - but there were no specifics as to what foods he should avoid and quantity he has to have. Please help me with this. thank you and God bless you all.

    lori a

    Been married to my hubby for 6 years together 8. I met him as he is, a hemodialysis patient. Were fairly young him 33 and he had his kidneys fail at age 14 and was told he'd never be able to have children due to some large amounts of steroids he had to be on. He ended up getting a transplant which lasted him 6 years and has been on dialysis in center since age 21. He doesn't comply with diet but is careful about his fluids, he hasn't taken his binders in 3 years and he's a hard worker. Although, I am trying to get him back on his binders so I don't recommend anyone to stop taking them. We were naturally able to have kids were on our third and hopefully last, this from a guy who wasn't suppose to have kids. Life can keep on going just keep on keeping on like normal.

    Pete

    Hell! Why don't you just answer the QUESTION!!!
    How long !~~~

    lekshmi

    hello,
    My father 55 years old, diabetic, having angio plasy history 2years back,suffered with pulmonary edema 2 times, just started hemo dialysis. He is found as very gloomy and tensed after that.I have so many doubts about HD. Is it a permenant process? Is there any treatments for kidney failure other than dialysis and transplantation? Is dialysis a life time process? how much years a man can withstand with dialysis? Dialysis twice in a week is necessary?

    Salicia

    I'm trying to get my mom (on Dialysis for about 2 years) to take better care of herself. She's afraid of transplant. We lost dad after he had a transplant. The hospital is great. She not eating healthy (in my opinion) I was always a daddy's girl... now I'm finding myself very close to her and I want her to hang in there with me for as long as possible. Any advice?

    Corinne

    I nearly list my partner recently - three times over. I love him dearly and I am trying to get him to grasp life with both hands and make the most of what we have. He has cardiac,liver and kidney failure and he struggles with the dialysis. I am trying to keep his spirits up and have gone above and beyond to keep him in this world but I am struggling big time at the mo xx

    Shubham Shukla

    Guys,

    Listen, I'm 23 years old and I'm Canadian. My dad who is 55, last year, was visiting me in Detroit (we live in Windsor, Canada now), and he fell ill and was admitted in the hospital for 1 month. We found out his kidneys weren't functioning .. they were at about 25% working capacity ... He's been on dialysis for 10 months now ... He's working hard on his diet and stuff... he feels tired after dialysis sessions though ... PLEASE GIVE ME ADVICE AS TO HOW HE CAN MAKE HIS LIFE BETTER. the good thing is that we all live together.

    michele

    I think this article is bull. No one can predict how long anyone will live.

    Jim Heidmann

    So amazing to hear all of the positive comments even with the problems encounter re. Dialysis.
    I wish to mention the Pairing program that was available for my wife at the Mayo hospitals. My wife's was diagnosed with stage 5 kidney failure the day after christmas 2014. She went thru the process of having a fistula installed while at the same time getting approved for a kidney transplant at the Mayo. While there I was tested but was not a good enough match to provide a kidney but was eligible to participate in the pairing program.
    One of the physicians said that if we joined the pairing program my wife would have a kidney within a year. As it turned out I did get approved to donate a kidney and Jan received her kidney within 6 months of being diagnosed with kidney failure.The pairing program is one where a friend/'family member gives a kidney in exchange for another person who can give a kidney in exchange to your loved on. . We were told that there has been as many as 12 exchanges happening at one time.
    End result is that jan is 100%. All of her blood work was back to normal one day after sugary. Her Creatine was down to .8 and her filtration rate was over 60. She had been told that with her antibodies she most likely would not get a cadaver kidney for 5 years and it could be as much as 7. As we were both 70 years old it would have been likely that she never would have received a transplant.
    After i gave a kidney my creatine appears to have stabilized at 1.5 and my filtration rate is 45.(under 1 and over 60 is normal) I am told that my levels are normal and I feel no bad effect other than not having quite as much energy and feeling cold more often. I have also been told that my numbers probably will improve within a year of surgery as the kidney will grow.
    The Drs' have stated that jan's kidney will last a lifetime as it was a very good match. We have been truly blessed in this Journey.
    So PLEASE INVESTIGATE THE PAIRING PROGRAM.
    GOD BLESS U ALL GOING THRU THIS SITUATION
    Jim

    Jim Heidmann

    Have another thought that I wish to post. As I stated in my recent post, my wife was diagnosed with stage 5 renal failure Christmas 2014 and received a new kidney in July of 2015 thru the Mayo pairing program.
    What I failed to mention, is that she fell and broke her shoulder in June 2015 due to osteoporosis. We were told that the osteoporosis was a result of her kidney failure and her bone strength would continue to improve with the new kidney. Also her high blood pressure has normalized and she has gone from 5 mediations to 1 for her BP.
    The new kidney was a wonderful blessing for her( and I).
    Jim

    Jim Heidmann

    Again have another thought that i wish to share. The Mayo has a contract with medicare so most of the transplant costs are covered. If you have supplemental insurance along with medicare almost all costs will be covered. We had both and our total out of pocket was under $2500 out of over $100,000. Additionally my costs as a kidney donor was paid for by the medicare/insurance of the recipient. I did not even receive a bill.
    Hope all will consider investigating this option.
    Jim

    Rhonda Burchett

    Hi. My name is Rhonda and my mom was diagnosed with stage 5 CKD last year. With the start of the new year the doctors put a catheter in her chest for dialysis. In February they put a graft into her left upper arm. (Her veins are too small for a fistula) It is now the end of April and her graft is out because it got infected and they did something to her catheter (something about a wire was broken?). Needless to say she is back in the hospital for the 4th time since November. She goes to dialysis faithfully three times a week for 3 1/2 hours. She walks with a walker when she has to but mostly stays in the wheelchair. She has diabetes and hypertension, and depressed. I do everything I can for her, I take care of the house and pets, take her to all her appointments. I don't know what else to do to get her back to something like herself. Any and all suggestions/websites are GREATLY appreciated.

    Jkp

    It's good to hear that there is some hope for people suffering with kidney failure and other illnesses. At the age of 8 I lost my dad from cancer, my brother was 5 at the time. It was the most painful time to go through as I watched my mum suffer from depression after his death.Because we was so young and my mum wasnt coping well, few years after his death, my grandad suggested that my mum should consider to maybe get married again as shes still young and it would also support me and my brother. it took my mum a while to consider the approach and got married again. Having a step dad has been amazing I couldnt wish for any better he has kept my mum happy and has been a great father to me and my brother, he cant replace our own father but we love him like our own.I now have younger siblings aswell who I adore to death. Unfortunately my step father suffers from diabetes type 2, he also suffered from a. Major car accident 7 years ago and has sufferd two heart attacks and had to undergo bypass surgery three years ago. Just two weeks ago we faced another news, his kidneys are failing he is on 16% and is going down fast than expected. We have been told that he will need to be on dialysis in 6-12 months. He is only 47 years old. My world has shattered to pieces, it is like seeing my family fall apart again and seeing my mother break, we have been through alot of hardship, also lost my grandad three years ago and. Also my grandmother passed away last yr. I don't know how to feel anymore apart from emotionally ditached. I am praying there is hope for us.

    Lynda Tesar

    I have been doing pd for almost a year. I am thankful I can do pd. I don't think I could sit still in a center for 5 to 6 hours at a time. My cycler runs 9 hours and I sleep. So this is now life.

    Lorrie Lynam

    I have been on hemo dialysis since I was 16 I am 55 years old. I've been on hemodialysis dialysis for 39 years. And a few years of peritoneal. In 1989 I was given two weeks to two months to live. I also am a three time cancer survivor and made it through 2 heart attacks one major 97% of my heart was blocked. God willing to and a half more years I have two feet but I think I'll go on along more than that. GOD IS GOOd!

    Octavia

    My husband has been on dialysis since 1984 (off and on)he has had 3 kidney transplants (cadavers). He has congested heart failure as of 2009. Now he is suffering from chronic itching and picks at himself constantly to the point of bleeding. He takes Warfarin and that's not good for him to bleed like that. I am at my wits end and don't know to do for him.If any one has any suggestions, I am open to them. Thanks

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