Dialysis help...

by babygirl75 12 Replies latest jw friends

  • babygirl75
    babygirl75

    Hey Everybody..It's been a while since I've had a chance to post. Hope all is okay...

    Some of you may or may not remember from my earlier post that I had breast cancer last year and went through chemo. Well, My kidneys have been slowly failing since I was 17 and they got worse a few months after I had my son. I just found out last week that I may need to go ahead and start dialysis. I've gone over the info that the doctor has given me and have even looked over the internet, but it still helps to be able to talk too and hear suggestions from ones that have acutally gone through it. Any suggestions you would have regarding which treatment option and your experiences and side effects would be greatly appreciated!! I go next week to a training course to let the doctors know what option I'm choosing.

    Thanks so much!!

    Babygirl75

  • dawg
    dawg

    My cousin was on two types of dailysis. I think one was called parateneel or something close to that. He had tube that went through his stomach and a sailene solution would flush out the paratneel cavity. I know I'm spelling parateneel wrong but bear with me. He liked this best, only problem with it was dry skin, and the like... he also got paratynisis... wrong spelling again, but this was a bacterial infection, and was really painful. But as long as he keep all things clean, he was ok

    The machine-takes a long time, and casues cramps and sickness.

    I hope all works out well for you.

  • juni
    juni

    I'm sorry I don't have any information for you, but I want to wish you the best.

    Juni

  • Mum
    Mum

    Recently I worked in a dialysis clinic. The patients had to come in 3 times a week for 4 hours each time, making it, in my view, practically a part-time job. This was all new to me. There were dietary restrictions which I can't recall right now, mostly concerning potassium intake. Patients brought blankets and books so they could rest or keep their minds busy while awake. They would also bring water and snacks. It was like packing for a weekend trip getting ready for dialysis.

    My take was that dialysis was very tiring, as the patients looked spent afterwards. Dialysis is also a great equalizer. The mighty and the lowly were all together in one place facing the same issues, as dialysis clinics are few.

    I am not qualified to give you any insight from a medical perspective. You might already know what I wrote above. In any case, best wishes with whatever choice you make.

    Regards,

    SandraC

  • Scully
    Scully

    When I was in nurses training almost 10 years ago, I learned a little bit about dialysis. There are probably other nurses or dialysis patients on the forum who have more experience than me that can direct you to their preferred informational sites.

    Whichever form of management you choose, dialysis is basically a lifetime commitment until you have an opportunity to receive a transplant. It will require a special diet and several hours of your time, several times a week. You can't take vacations from it. It's almost like having diabetes and having to commit to a lifetime regimen of insulin injections and blood sugar monitoring.

    Wikipedia has some good basic information discussing the types of dialysis treatment options available:

    http://en.wikipedia.org/wiki/Dialysis

    http://en.wikipedia.org/wiki/Peritoneal_dialysis

    http://en.wikipedia.org/wiki/Hemodialysis

    Here is a page from the Kidney Foundation's website that directs you to various diet and nutrition issues that you may be facing:

    http://www.kidney.org/atoz/atozTopic.cfm?topic=4

  • AudeSapere
    AudeSapere

    I have nothing to suggest other than to find a website/discussion forum specifically for dialysis patients.

    They would probably have much info to share with you.

    I'm sure will make a decision that is best for you.

    -Denise.

  • IWillBeDubbedNoMore
    IWillBeDubbedNoMore

    My heart goes out to you babygirl75

    I don't know if my experience will aid you or not, but I hope it does. I currently have a transplant, but I was on dialysis for over twelve years, both peritoneal and hemo. For me personally, C.A.P.D. was better than hemo. Hemo involved spending three to four hours three times a week at a facility. Rain or shine. The day of my treatment was a very exhausting day. After treatment I would feel tired and needed to rest. The next day I felt like doing things. Unfortunately, all the time I was off of dialysis, my body was building up toxins. This caused me to feel tired. Plus my body accumulated fluids until the following treatment. I found that I only had three good days a week. Those being the day after each treatment.

    While on c.a.p.d., I had to change a bag four times a day everyday. Having the fluids in my peritoneum continuously allowed my body to always receive treatment. There was less strain on my body as compared to hemo. C.a.p.d. worked more like my own kidneys. I felt better on capd. I didn't have the exhausted days that I had on hemo. I wasn't confined to one location threes times a week either. I could basically go anywhere that I wanted. I would even change a bag at work. If I wanted to go traveling for the day, I would change in the car. Later I bought a van for that purpose. I only took one major trip while on dialysis. That was to Disney world. I had relatives in Florida, so, I had a supply of treatment bags delivered ahead of time. I changed in the car during the day and the hotel at night, and had a wonderful time.

    Everyone is different, so you need to decide if you are the type of person who wants to have the main responsibility of your treatment or would you prefer the medical staff doing it. If you prefer not having the responsibility than hemo would be better for you.

    When I received my transplant, they had just started offering another choice with peritoneal treatment. Instead of four bags a day all day long, they offered a machine that would do the work overnight, which could be done at home. That might be another option for you. It would free up your day.

    I don't know if this was of any help to you or not, I hope so.

    I would recommend that you put your name on the transplant list immediately. I wasted 13 years of my life because of the idiots in Brooklyn. Even though they had reversed their teachings on transplants and said that it was ok, I still worried what God really thought on the matter. I was a good dub. So, I delayed having the transplant for many years. I regret that more than you can imagine. I have a new life since the transplant. My health has returned. My energy level is normal. I highly recommend it.

    Whatever decision you make, I hope it is the best one for you. Good Luck and Good Health

  • moshe
    moshe

    Decide if you need to take any trips/vacations away from home as that might favor one type over another.

  • AudeSapere
    AudeSapere

    Wow, IWillBeDubbedNoMore -

    Sounds like you've been through alot. Thanks for sharing your story and welcome to JWD.

    I hope to hear more from you.

    -Aude Sapere (latin term meaning: Dare to Know; Dare to Have Wisdom/Understanding; Dare to Think for Yourself)

  • DJK
    DJK

    If you have a full time Monday to Friday job, you may want to schedule your dialysis for Friday. My brother in-law and a coworker I know could not work the following day.

    I wish you well and hope your health issues aren't too problematic for you.

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