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I'm here, kicking and screaming
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Topic: I'm here, kicking and screaming (Read 3272 times)
kickingandscreaming
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I'm here, kicking and screaming
«
on:
March 24, 2015, 07:30:58 PM »
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.
Logged
Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Zach
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"Still crazy after all these years."
Re: I'm here, kicking and screaming
«
Reply #1 on:
March 24, 2015, 07:56:17 PM »
Welcome to our community!
We're a friendly bunch here at IHD.
Logged
Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant. Not yet, anyway. Only decided to be listed on 11/9/06. Inactive at the moment.
I make films.
Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat 5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600; Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -): 2,450 Calories, 84 grams Protein/day.
"Living a life, not an apology."
Charlie B53
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Re: I'm here, kicking and screaming
«
Reply #2 on:
March 25, 2015, 08:11:53 AM »
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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Deanne
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Re: I'm here, kicking and screaming
«
Reply #3 on:
March 25, 2015, 08:37:46 AM »
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.
Logged
Deanne
1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
MooseMom
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Re: I'm here, kicking and screaming
«
Reply #4 on:
March 25, 2015, 08:46:16 AM »
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!
Logged
"Eggs are so inadequate, don't you think? I mean, they ought to be able to become anything, but instead you always get a chicken. Or a duck. Or whatever they're programmed to be. You never get anything interesting, like regret, or the middle of last week."
Bambino_Bear
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Re: I'm here, kicking and screaming
«
Reply #5 on:
March 25, 2015, 09:45:14 AM »
Welcome to IHD!
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
Logged
I am a caregiver to my wonderful husband, He is 4p and started PD October 2013. We have several living donors waiting to be tested for a transplant. Dialysis is a bridge to get us where we need to go.
He had a transplant in November 2019.
Rerun
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Going through life tied to a chair!
Re: I'm here, kicking and screaming
«
Reply #6 on:
March 25, 2015, 09:58:01 AM »
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.
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SooMK
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Re: I'm here, kicking and screaming
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Reply #7 on:
March 25, 2015, 02:03:13 PM »
Welcome K&S! Great to have you here.
Logged
SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
Sibella
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Re: I'm here, kicking and screaming
«
Reply #8 on:
March 25, 2015, 05:46:11 PM »
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.
Logged
November 2014 GFR 22 (diagnosed Stage IV )
January 2015 GFR 26
March 11, 2015 Kidney Biopsy
September 17, 2015 GFR 25
December 9, 2015 GFR 15
January 25, 2016 GFR 13 (Officially Stage V)
March 8, 2016 GFR 11
April 7, 2016 Fistula created in dominate arm
April, 2016 eGFR 7
May 16, 2016 Peritoneal Catheter surgery
June 10, 2016 Started CAPD
November 7, 2019 Transplanted
lmunchkin
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"There Is No Place Like Home!"
Re: I'm here, kicking and screaming
«
Reply #9 on:
March 25, 2015, 06:20:41 PM »
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
Logged
11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present. NxStage at home
kickingandscreaming
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Re: I'm here, kicking and screaming
«
Reply #10 on:
April 27, 2015, 12:24:47 PM »
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.
Logged
Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Darthvadar
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Re: I'm here, kicking and screaming
«
Reply #11 on:
May 26, 2015, 12:08:29 PM »
Good to have you here, K&S...
Hope you continue to remain stable... I too am an animal person... Would't be without a dog....
Darth... Moderator...
Logged
Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
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