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  1. #1
    Junior Member
    Join Date
    Sep 2011
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    8

    Wink Just diagnosed to Stage 5 kidney Failure

    Hello all my name is Tony,

    I was diagnosed with stage 5 kidney failure a week ago and needles to say it was a shock more then something you want to hear. I have been told I have to chose between PD dialysis or HD dialysis. I chose the home option over a center but I am more worried and scared then feeling relief. I want to be there for my 5 kids and wife and it seems like this just puts another road block up. Can you give me some help on what to expect since I am not on dialysis yet and I have been told it is coming in the near future. I want to stay active as much as possible with Boy Scouts I am adult leader for my district and I help teach new scouts there ranks in our troop. I would just like to know what I can expect tiredness, weakness, whats it like after your done with your treatment. My health care case worker is working on getting me on the Transplant list asap but as we all know that can be a waiting game for the right person to come along. Thanks for all your response. Tony

  2. #2
    Senior Member
    Join Date
    Apr 2011
    Posts
    608

    Re: Just diagnosed to Stage 5 kidney Failure

    Hello Tony,

    Welcome to the forum. I'm sorry about your diagnosis and understand you have a lot of questions. I'm still in stage3 so I really can't offer you expert advice on that but you may wish to go over into the main part of the site and look into the information about treatment options there:

    http://www.davita.com/treatment-options

    Another good site to visit is:

    http://www.kidneyschool.org/

    There are many here on the forum that are on dialysis and they are very good about replying to posts but it may take a little while, so don't give up, I know they will be responding in the near future.

    We are all here to help you through the process, so you should feel completely comfortable in asking any and all questions you have, as well as expressing your concerns.

    All my best to you.
    Create signature while not logged in, edited through forums.davita.com on 08/15/2012 @ 12:53!!!!!

  3. #3
    Senior Member
    Join Date
    Feb 2006
    Posts
    1,511

    Re: Just diagnosed to Stage 5 kidney Failure

    Hi Tony,

    Welcome to our kidney family!!

    It is scary when you first find out. Fear of the unknown is really the worst, but let me tell you, it's not as bad as you think.

    Treatment options have improved so much in the last few yrs and they keep improving as we speak.

    When you say home treatment, do you mean Peritoneal Dialysis (PD) or Home Hemodialysis?

    I did PD for a number of yrs (6 yrs to be exact). I continued to have a pretty normal life. I worked. I did normal activities with family and friends.

    Life does not have to end nor change just because you have kidney failure. You do have to make a few adjustments (diet, meds, and dialysis), but it's all doable. Believe me, it really is.

    In the beginning it might be trial and error, because dialysis, like all meds are not ONE SIZE FITS ALL. Your Dr and/or Nurses might have to treak your treatment (then again, the first RX might work for you).

    The most important thing to do now is to follow your med regimen as well as diet (I hope your Dr has sent you to a renal dietitian).
    Foods low in phosphorus and potassium are required at this stage. Of course your lab numbers will be able to guide you as far as where in your diet you need to make adjustments.

    If you have any specific questions about PD, do not hesitate to post them.
    You can also PM anytime, I'll be more than happy to try to answer your questions based on my experience.

    The link IhaveFaith posted for KidneySchool is a great tool to have. When you have a few minutes take a look at it. There are learning modules you can do at your own pace, I definitely recommend them.

    Take care !!

    Marina
    I received the GIFT OF LIFE on Nov 9, 2010 thanks to my wonderful donor Laura and her family!

  4. #4
    Senior Member
    Join Date
    Jul 2010
    Posts
    109

    Re: Just diagnosed to Stage 5 kidney Failure

    Welcome Tony. I'm also stage 5 and have been for over a year. My husband is the cook in the family so he keeps me Healthy by watching everything I eat. Diet is truly important at this time in our lives. Watching our proteins, phosophorous, potassium & salt intake can really help to keep us off the "machine". If and when the time comes that dialysis is on the agenda I'm going to try PD. Marina has totally sold me on the merits of PD and her success on that type of dialysis has helped me keep the "dang I'm scared" feelings at bay. This is a wonderful place for information, dietary ideas and to vent during our darkest hours. Peace be with you.
    2000 - Doctors said I would be on Dialysis within 5 years
    2011 - Still Pre-Dialysis
    Sept 2011 - GFR: 15 Creatine 3.9
    Too much of a good thing can be wonderful. - Mae West
    Doing Good may not do any Good but do GOOD anyway

  5. #5
    Senior Member
    Join Date
    Jun 2011
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    180

    Smile Re: Just diagnosed to Stage 5 kidney Failure

    Hi Tony,

    I have recently stepped down from being a Boy Scout leader.... I was the advancement officer and also taught many merit badges. I stepped down because I was just too overwhelmed and my son joined the National Guard so it was time for others to take over. At first when when my kidneys first failed I was really sick and almost died in the hospital. They didn't think I would ever get better but I did....it took me a while but I did it. I am basically doing most things I used to do. I do get tired and I have learned to take a break if I have to... I can't really do some things due to the brain damage that happened. But if I can take my time, I seem to get it done. I am so happy to find this site. It has really helped me and taught me a lot from both the patients point of view and the caregivers point of view and sometimes my friends here just make me smile!!! You just have to do all that you can but when you need a break, fit it in.....In the last year or so I have had more good days than bad days. It can be inconvenient sometimes but I just try to get through it....

    Good luck with everything and keep us up on your news!!

    Patty
    Patty Lewis
    Stage 5 CKD
    PD Dialysis since Dec 2009
    On transplant list July 15, 2011
    patty.lewis 19@ yahoo.com

  6. #6
    Junior Member
    Join Date
    Sep 2011
    Posts
    8

    Wink Re: Just diagnosed to Stage 5 kidney Failure

    Thank You for all the great advice, I went to a davita dialysis center yesterday and met with the Nurse who handles PD patients and came out feeling allot more comfortable then when I went in the front door. I got to meet with Janus who was wonderful and my new kidney Dr who I will be seeing there in October. I would like to here from the ones of you who have done PD or who know someone who has done PD in your networks. I have some concerns one being infections I will tell you this scars me the most I listened to Janus say how not to get one but I am still a little worried my wife went with me and on the way home we realized we are going to have to make some adjustments to our bedroom and reoganize it allot:-) I am not on dialysis yet which is a blessing but I do have to be aware it is coming. For the most part I am a positive upbeat person but like all of us I have my days. I have been to the kidneyschool.org link and will use that resource. My diet has been managed since I got Diabetic and CHF in April so sugar and salt are on the low end of my list because I don't like my lungs filling up with fluids. Here are some question I have?
    1. Does anyone go camping here and have to do PD while camping what are ways that you have found to prevent infections while in the woods.
    2. How limited do you get with PD are you tired allot like Hemo or do you find you have more energy?
    3.Classes were recommended being taken in Westminster, CO which is an hour away will I learn more online then in the class?

    Thanks again for all your advice and support Tony

  7. #7
    Junior Member
    Join Date
    Aug 2010
    Posts
    15

    Smile Re: Just diagnosed to Stage 5 kidney Failure

    Hi, Tony,
    Sorry about getting this diagnosis, all of us on this board have been there. What everyone has said here is correct. The people on this message board are a godsend and their words are very inspiring, and tremendously helpful. Follow your doctor's advice about meds and diet. Also- make sure you have the best medical care you can get. My husband started dialysis this past April. We knew it was coming for a few years and dreaded it. It has not been anywhere nearly as awful as we were afraid it would be. My husband chose in center dialysis, at least for now, and goes three times a week at 6:00 AM. This allows him to go to work after, and he has not missed any time off from work due to dialysis. In fact, no one at his work even knows he is on dialysis. There have been some kinks- he sometimes gets cramps towards the end of the treatment, and a few times, his blood pressure dropped very low. He is no longer on any blood pressure medication at all. On the upside, he feels fine, the awful fatigue, which plagued him for a long time, is gone. Thankfully his lab values are all excellent, and in normal range, so he has not really too restricted with diet, just watches his salt and fluid intake. When he feels he is ready we will train for home hemo, which will allow for more flexibility. This summer we took three mini-vacations on each of the long holiday weekends, but we are looking forward to being able to take more extended trips, as we like to do. He started the transplant process and I had hoped to be a donor but was ruled out due to my high blood pressure. He is on the list, which will take years, but in the meantime, we carry on and continue to live our lives- and you'll see- you will too.

  8. #8
    Junior Member
    Join Date
    Oct 2011
    Posts
    3

    Re: Just diagnosed to Stage 5 kidney Failure

    Quote Originally Posted by tgaston36 View Post
    Hello all my name is Tony,

    I was diagnosed with stage 5 kidney failure a week ago and needles to say it was a shock more then something you want to hear. I have been told I have to chose between PD dialysis or HD dialysis. I chose the home option over a center but I am more worried and scared then feeling relief. I want to be there for my 5 kids and wife and it seems like this just puts another road block up. Can you give me some help on what to expect since I am not on dialysis yet and I have been told it is coming in the near future. I want to stay active as much as possible with Boy Scouts I am adult leader for my district and I help teach new scouts there ranks in our troop. I would just like to know what I can expect tiredness, weakness, whats it like after your done with your treatment. My health care case worker is working on getting me on the Transplant list asap but as we all know that can be a waiting game for the right person to come along. Thanks for all your response. Tony

    you know i am stage 4 kidney patient i have 13% kidney function. i get the tube in my neck on friday and i start the dialsys right away. if you are stage 5 then that is emergsy wich means you will die if you do not go on dialysis right away.i know

  9. #9
    nerak
    Guest

    Re: Just diagnosed to Stage 5 kidney Failure

    Quote Originally Posted by darledamr View Post
    you know i am stage 4 kidney patient i have 13% kidney function. i get the tube in my neck on friday and i start the dialsys right away. if you are stage 5 then that is emergsy wich means you will die if you do not go on dialysis right away.i know
    I usually come here & just read the latest posts, but I had to reply to this one........that's not true at all........everyone's different & I'm proof of that........I've been in Stage 5 since I was first diagnosed 7 years ago & I'm not on dialysis. Watching what you eat REALLY does make a difference! (Don't tell anyone, but I doooo cheat!)

  10. #10
    Member
    Join Date
    Jun 2011
    Posts
    42

    Re: Just diagnosed to Stage 5 kidney Failure

    Tony, you gotta know exactly what you are in for, when opting for either hemodialysis or peritoneal dialysis.

    Personally, I opted for peritoneal dialysis so that I do not have to commute every other day to the centre and spend 4 hours sitting there while flirting with the nurses. My plan was to work in the morning and just hook up at night while I go to sleep.

    I don't really like what I am going through because EVERY SINGLE DAY, I have to -

    1) Prepare 2 x 5 litre bags of fluid and hook them on to the machine. That means about 15 minutes of hooking up the cassette tape, the dialysate bags and the drainage bag and priming the machine

    2) Change my exit site dressing and clean and make sure it's sterile

    3) Then try to sleep (this proves to be my biggest challenge yet)

    4) Drag the bag of fluid (10 litres) to the bathroom and slowly drain it out)

    I have started peritoneal dialysis for 3 months now but I still have not gotten used to it, I still can't get to sleep easily and sometimes whatever sleep I could get, I am awakened by alarms by the machine.

    Sad to say, I have not got into the rhythm yet and I find it hard because I have to stick to a regiment since I have to be hooked up 9 hours straight, and have to be home early every night when I should be out partying and enjoying myself sometimes.

    I really find it a back breaking process, having to lug these things around the room every day, and my back sometimes ache so bad from all these, apart from the fact that my belly is filled with fluid in 6 dwells every night, so it takes a toll on my back.

    I also find that it robs a lot of my time, preparing to be hooked uo, and then clearing up in the morning but I can't switch to hemodialusis easily because it is bad for my heart (I have had a quad heart pypass in 2009).

    My suggestion is to do whatever you can to hold off dialysis because chances are that you won't like it when you have to finally do it.

    May 1976 First smiled at the midwife
    June 1980 Learned how to ride a bicycle
    1981 Learned Excel and Word
    1989 - Diagnosed with diabetes type 1
    1993 - Diagnosed with OCD
    4th Nov 2008 - Quadruple CABG
    July 2011 - Started full-time kidney dialysis
    Also diagnosed with peripheral neuropathy | retinopathy | hypercholesterolemia | hypertension
    All I want for Christmas are new kidneys and a brand new pancreas and a red hot Ferrari!

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