I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: rosebudd85 on May 31, 2012, 03:04:21 PM
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Hi I'm 46 years old a grandmother to 4 beautiful grandchildren and married to my soulmate for 27 years. I was told about 20 years ago I had FSG and lived life to the fullest as I could. We are a very active family we camp everyweekend in the summer and we ride atv's in the winter we snowmobile and ice fish and now I was told to start thinking about dialysis and which kind I want to choose. Well I would like to to home dialysis but when I was 4 I almost died from pergatinatisis (sp) and have a huge scar on my left belly so I don't know if I will be able too do the home kind? Anyway I'm too young I know what life is like on dialysis my mother and father both were on it and thier life changed so much. I quess I'm just scared of going on diaylsis but I quess I better get over it and suck it up cause that is where I'm headed in the near future!
:'( I'm glad I have this site to just let it all out. My husband is so good but sometimes I feel as he just doesn't understand my fears.
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Yes, the whole thing is quite scary. Last year when I had to start dialysis (PD on a cycler at home) I got very depressed. I think every chemical in my body was out of whack. In my case the ESRD was a long time coming and an expected event, but I still got very, very sick right before I started PD. I too am an active person and have thankfully been able to keep working full-time and exercise several times per week.
I hope the condition you had was long enough ago that it won't be an issue if you choose to do PD. Ask your doctor! My nephrologist didn't even bring up the home options or PD until I asked specifically about them. PD does give you quite a bit more freedom in some ways, but it has it's own downside issues as well. If PD isn't possible for you, home hemodialysis is a more complex option. I haven't done that modality myself, but plenty of others on IHD have proved it too is a viable option...so search around and I'm sure you'll find the support you need.
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It is frightening! I was so naive that I just walked into it blindly. I went with PD so I could be free during the days to be with my son who was young when I started dialysis. Just remember, one foot in front of the other and breath, just breath.
:flower; :flower; :flower;
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Rosebud,
You can do Hemo dialysis at home, too. That may be an option for you if your husband is willing to help out. That is what we did, with NxStage.
Definitely look into it. We were still able to go camping and traveling with our little machine!
Aleta
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Rosebud I'm on PD and hopefully can continue. Look into all the options before you rule one out - ask questions here and to your Dr. Some methods work better for folks than others, only you can figure out what is going to best for you and your life style. Grumpy
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rosebudd85, Welcome to the site. :welcomesign;
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so glad you found your way here. It's been a lifesaver to so many of us. It really helps that others DO know how you feel. Wishing you the best and dont be afraid to ask anything. Lots of experience here to share :welcomesign; :grouphug;
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Welcome to IHD, rosebud!
As has already been said you can do home hemo with NxStage or similar and that may well be a good option for you.
I also want you to know that yes, when dialysis comes you can face restrictions and some lifestyle changes, but you can also work with it - specially when you're young and active it can just become a part of your routine. It is scary yes - more of the unknown I think (despite your seeing your other family members undergoing dialysis) and changes will be required, but you can still live with it and live quite well - there are many examples on IHD of people working full time, running the household, looking after kids etc while doing dialysis. It may not be easy at times, but try to not think of it as a horrible thing but more just a different chapter you're headed into. I think attitude can be key.
Anyway I'm glad you found us and hopefully we can help you as you start this new chapter.
RichardMEL, Moderator
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Don't rule out PD as an option until the docs say so. A scar from age 4 might not mean a thing now.
But, if it's not an option, home hemo is a good choice. If you are living an active lifestyle and you have to do hemo, do look for a center that offers NxStage. If you search for it on youtube, you can find all kinds of vids of people doing at their campsites or in their RVs. It gives you a lot greater freedom to travel.
Start reading and learn as much as you can. The more you know, the easier it is to cope. Plus, if you know what your labs mean and why the diet and fluid restrictions exist, you can learn how to tailor your lifestyle and your diet to suit yourself, not the doctors and the dietitians.
:cuddle;
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:waving; Hi Rosebud, and welcome to IHD! As you've already read this is the place to be if you need info or encouragement. My husband is also very supportive, but sometimes you just need to talk to someone that has been or is in the same place you are now. Let us know how you're doing, and what you need.
MJ
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:welcomesign; It's okay to be scared...we are here, we understand....
xo,
R
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You are not alone.
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Me too, I am scared. But, I figure if all these nice people can do it, you and I can too. Hang in there!!!! :grouphug; :grouphug;
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Rosebud,
My hubby has 14 years of dialysis under his belt. 11 on PD almost 3 with Nx stage. The beginning is Very scary. when we switched from PD to Home Hemo we both were terrified. One of the things that was really helpful was doing all the training together. It's not necessary to have a care partner do PD training but It enabled me to completely learn and understand the process so that when he was having issues or needed help I could step in before he got really frustrated. With home hemo you have to have a partner train with you. If your husband is able have him with you at the Dr's to discuss options. He might better understand your fears and concerns about treatment.
P.S.- We travelled a lot on PD and just got a camper that we can do the Home Hemo treatments in ! Our first trip is in 2 weeks!