I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: kickingandscreaming on March 24, 2015, 07:30:58 PM
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Hello. I'm new here. I have stage 5 (10%) and am not yet in dialysis==although it's probably imminent. So far I still feel fairly good==except for my anemia which makes my stamina stink. But, thank heavens, still none of the more grisly symptoms of ESRD. I know that could change on a dime. I am scheduled to have a tunneled (buried) PD catheter installed on the 16th. I'm totally freaked out. By the time I get there I might change my mind and go for a regular catheter. We'll see. I guess I'm still in a lot of denial and want to put it off as long as I can. I am also Type 2 diabetic although I am well controlled just with diet and lifestyle. I don't think it's the cause of my kidney woes. I'm very health oriented--but not a fan of western medicine.
I'm female, age 73. But young at heart. I live in Massachusetts alone (I'm a widow) with my 13 yo dog who is the warm center of my life. I have no family, and my friends are pretty scattered at a distance. I've been quite independent until the last week when my 2 cataracts really deteriorated leaving me nearly blind. I have my first surgery next Monday and I hope I will be able to see again. I'm a Web designer, so not seeing is a major handicap. Not driving is not picnic either.
It freaks me out how negative my PD team is about my doing PD with a dog in my life. What they don't get, is that she is really the only motivation I have for staying alive. So if she's a problem, she's also the solution. If I do do dialysis it will really be for her so I can be there for/with her for the rest of her days. She's old but in good shape. After she's gone, I may march myself right into hospice rather than being kept on life support. I know that sounds negative, but I really don't like the idea of being kept alive on a machine. It's just a philosophical thing. I'd rather make a clean exit than spend the rest of my life bouncing from one medical emergency to the next.
I absolutely hate the Medical-Industrial Complex and I really am having a hard time adjusting to the fact that I'm about to have a major ride in its vortex. I'm very curious about how the rest of you find motivation for sticking around. I feel like I'm just taking up space and sucking up resources.
I look forward to being able to learn from those of you who are living well with the Big D. Thanks for reading.
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Welcome to our community!
We're a friendly bunch here at IHD.
:beer1;
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I started PD almost two years ago. My Nuse would have fits if she knew my dog, or cat, was in the room. Other than being pretty careful about NOT contaminating my fitting during connecting and disconnecting, I don't see PD as a problem, health-wise. Maybe I am just lucky not to have gotten any infections, so far.
I am NOT sick any more. Tired, but that is expected so I pace myself during any and all activity.
Considering all the good things I can still find in life, doing PD is no big thing, and it allows me to continue to enjoy this life.
You can expect a number of fears to pop up, just know that they will all be overcome and you can continue to enjoy doing pretty well what you choose, same as you have been able to before this came about.
Visit here often. Keep us updated on how you are doing.
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Welcome!
I did PD using a cycler with two dogs and three cats. My PD team knew about them and met them when they came out to do a home inspection before I started PD. My cats and dogs all sleep with me and the only comment the PD nurse said about it was to have them leave the room when I connected or disconnected. I made sure I washed my bedding weekly and kept my room clean, and I never had any problems with them being there.
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Plenty of people do PD yet have pets. Like others have said, keep them out of the room when you get on and off the machine. A good medical team will understand that people with ESRD want to keep their lives as normal as possible.
As for being thrust into the medical industrial complex, oh man, we can all relate. Just remember that you don't have to do anything you don't want to do. If you don't want dialysis, you don't have to have it.
No one likes being kept alive by a machine. No one. But YOU get to decide if it is worth it to you.
I'm really glad you joined IHD. I think you will find a lot of support and information here. You will get to see how others cope, and I think that will be invaluable to you!
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Welcome to IHD! :welcomesign;
My husband is 34 and has been on PD since October 2014. We have many furrbabies and our team pretty much told us what Deanne's told her. They just can not be in the bedroom when he hooks up or unhooks. We have not had any problems with infection.
My husband was also nervous to have the PD cath surgery but it went great, He did have some pain after but he just kept taking the pain medicine while he healed. The machine is pretty user friendly.
I wish you all the best.
Nikki
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Hello K&S, I'm so glad you joined us. I understand how you feel about sucking up resources and being kept alive. It just seems more normal to keep breathing day after day. Wait until you get an Explanation of Benefits for what they charge for Dialysis. You will crap! But, don't worry, Medicare onley gives them a tenth of what they charge. It is a big racket keeping us going. Take a deep breath and hang on.
Rerun, Admin. :welcomesign;
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Welcome K&S! Great to have you here.
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K&S, I'm still Stage IV and quickly approaching 70. I have been sitting here blinking and trying to clear my sight because I too have cataracts. I'm going to deal with that first because I have to be able to read (retired librarian & book blogger). Our attitudes toward the Medical-Industrial Complex are similar and I have also thought about just letting nature take its course. You are not alone. (Although I won't start dialysis at home nor do I currently have a pet.) Keep in touch. This is a very supportive group of folks who tell it like it is.
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Welcome to this fine community. You will love this site. So informative & knowledgable. Its been awhile since Ive been here, but it never really left me.
My husband did PD for almost 5 years. You should do fine.
God Bless,
Lmunchkin
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Thank you everyone for your welcomes. I just had a buried PD catheter installed about a week and a half ago. For those of you who may not know what a buried cath is, it's a cath for people in denial that they will ever crash, but still want to be prepared. Just in case. It's a regular Tenchoff cath, but instead of it coming out of the body right away, it's tunneled just under the skin and can be "revealed" with a small in-office procedure. They thought I was crazy to do it this way (with 6-8% kidney functions), but I am still not sick, knock on wood. Or at least I do not FEEL sick, so I see no point in starting dialysis before I have a perceived need for it.
I also recently had one of my cataracts fixed (second one on 5/11) and that was a miracle! Now I can see! And that helps me feel so much better about everything--except beginning dialysis.
My PD team and my nephro are definitely NOT animal people. And I definitely AM one. My nephro shared with me her hesitation to encourage me to to PD over HD. She said her nurse/social work team (who did a home visit about 8 months ago) were "very concerned" because of my dog (and perhaps that I'm no Martha Stewart). I said to my nephro, "if you allow people with young children to to PD, then you should definitely let someone with a single dog do it. Young children are the biggest germ vectors on earth and yet you don't discriminate against them!" She told that she loved my argument and hasn't said anything about it since.
So I'm in a holding pattern. Only time will tell.
BTW, is there any way on this forum to get a notification that someone has responded to your post? I don't have the time to check here all the time, and I'd like to know if there's a conversation I should be participating in. Thanksl.
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Good to have you here, K&S... :welcomesign;
Hope you continue to remain stable... I too am an animal person... Would't be without a dog....
Darth... Moderator...