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paul.karen
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« on: October 29, 2008, 12:15:59 PM » |
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I have a doctors appt. today. I have been putting it off for a LONG time. I kept rescheduling. Didnt want to hear what he had to say anymore. I mean i look and feel fine. Last time i saw him he told me on our next visit he would set me up for a fistula operation. I didnt know what a fistula was. Let alone know i had OPTIONS. I feel i am much more ready to see my Doctor now that i am armed with SO MUCH more info then ever before thx to the people here at IHD>   I am almost hoping he will say i need to start soon. I am no longer in denial. I dont want to start ever. But i know it is gonna happen. And i know i want to go CCPD. Wait till i tell him that LOL. I am armed with so many question for him my normal 10-15 minute appt. may well turn into an easy hour. And depending on what he tells me today i may have a million question regarding CCPD tomorrow for people here on CCPD. In short this little website IHD. Has prepared me much more then any DOCTOR or BOOK or video tape could in a million years. so a big THANK YOU TO ALL IHD MEMBERS. This truly is my new home away from home. P&K |
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Curiosity killed the cat
Satisfaction brought it back
Operation for PD placement 7-14-09
Training for cycler 7-28-09
Started home dialysis using Baxter homechoice
8-7-09
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okarol
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« Reply #1 on: October 29, 2008, 12:25:00 PM » |
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I wish I had found IHD before Jenna started dialysis - well, it didn't exist yet or maybe I would have! I am glad you feel more prepared and knowledgeable - KNOWLEDGE IS POWER - and the future might be a little bit easier to face knowing there are other patients here who have been in your shoes! Good luck at your appointment!  |
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Sluff
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« Reply #2 on: October 29, 2008, 12:35:40 PM » |
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I just wish Epoman could hear this. Good Luck at your appointment.  |
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« Last Edit: October 29, 2008, 12:54:04 PM by Sluff »
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Rerun
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« Reply #3 on: October 29, 2008, 12:56:08 PM » |
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P&K you are a welcome addition to this website. I know Epoman would have loved you!  |
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willieandwinnie
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« Reply #4 on: October 29, 2008, 12:58:53 PM » |
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 P&K.
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"I know there's nothing to it, but I want to know what it is there's nothing to"
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Joe Paul
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« Reply #5 on: October 29, 2008, 01:42:12 PM » |
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Pre-dialysis information is a great tool, but for people who have been on dialysis, this is a great place to come and blow off steam when the Doctors just cant seem to get it right. Many symptoms and solutions found out by people who have been there done that. P&K, good luck with your dialysis journey |
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
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Bajanne
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« Reply #6 on: October 29, 2008, 01:43:57 PM » |
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I hear what you are saying... I owe my smooth initiation to dialysis to IHD, and there weren't even that many members then, but Epoman, LifeOnHold and Rerun's posting particularly helped me to feel prepared. My caring thoughts and prayers are with you all the way. |
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"  I LOVE my IHD family!  |
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boxman55
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« Reply #7 on: October 30, 2008, 10:15:23 AM » |
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Well, what happened at your appointment Paul? ...Boxman
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"Be the change you wished to be" Started Hemodialysis 8/14/06 Lost lower right leg 5/16/08 due to Diabetes Sister was denied donation to me for medical reasons 1/2008 |
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paul.karen
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« Reply #8 on: October 30, 2008, 11:02:21 AM » |
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Well i went in thinking i was all ready to have an operation of some kind to get ready and start my dialysis. I told him about IHD and he was impressed with what i had learned. And glad i ddint cancel again, lol.
he was ready to send me for a fistula appt. When i mentioned i would much prefer to go CCPD. he said that would be fine. But i would first for a week or two learn how to do CAPD. Which i dont mind.
So after having me think the time was here for the last few months he said since i will be going the CCPD route that i shouldnt stress and that i have a few more months before i will need to get the Cath. Since the healing time for that is as he put it one to two weeks compared to several months for the fistual.
But he was mainly happy that i have come to terms with what i will have to face for the longterm.
he gave me numbers for two transplant lists he said i should put my name on now.
I think in reality he tried to scare me into thinking it was going to be sooner then later. To get me in the right mindset. Since he knew i was in denail for he last year or so. So between him and the people here i am ready. But he isnt..
So it is good news. And when he says it is time i am prepared.
P&K
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Curiosity killed the cat
Satisfaction brought it back
Operation for PD placement 7-14-09
Training for cycler 7-28-09
Started home dialysis using Baxter homechoice
8-7-09
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monrein
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« Reply #9 on: October 30, 2008, 11:08:08 AM » |
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That's great Paul, I'm glad it went so well. I bet he was impressed with your take charge attitude.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr. 2009
Second trx doing great so far...all lab values in normal ranges
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Zach
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« Reply #10 on: October 30, 2008, 11:09:44 AM » |
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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." |
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David13
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« Reply #11 on: October 30, 2008, 11:15:57 AM » |
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This just goes to show how incredibly important education is to the pre-dialysis population. If you hadn't known any better, it seems as though your doctor would have just automatically set you up for in-center hemodialysis without even bothering to mention other possibilites such as CAPD and CCPD.
You are one of the fortunate ones. Imagine all those people out there who haven't received any information on their own. They might never know there are other options until it is too late.
There is definitely something lacking in this country in terms of educating patients prior to starting dialysis.
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“The first human being who hurled an insult instead of a stone was the founder of civilization” - Sigmund Freud
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kidney4traci
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« Reply #12 on: October 30, 2008, 11:26:08 AM » |
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Glad your appointment went well, and also that your preparing your self to do what you have to do in the future. Keep as healthy as you can prior - good diet, exercise, prayer and chiropractic keep me going....
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Married - three children.
Alports female, diagnosed ESRD 10/04
11/04 Hemo in clinic
6/07 hemo at HOME!
2/3/09 - Transplant from an angel of a friend!!!
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kellyt
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« Reply #13 on: October 30, 2008, 11:46:50 AM » |
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Glad you're feeling better about the situation.
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1993 diagnosed with glomerulonephritis. Oct 41, 2007 - Got fistula placed. Feb 13, 2008 - Activated on "the list". Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta. Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  |
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Slywalker
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« Reply #14 on: October 30, 2008, 02:08:56 PM » |
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Glad to hear your appointment went well. Three Cheers for knowledge. Sandyb  |
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jbeany
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« Reply #15 on: October 30, 2008, 02:19:47 PM » |
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What is it with docs sending so many patients to hemo without even telling them they have another option? I've got a coworker whose husband is at the same stage you are, paul, and his doc didn't even mention PD either.
I'm glad this site has helped you, too! I know the information on here has made things so much better for me. This is where I learned about NxStage and home hemo, and where I've gotten much of the information I need about lab tests and diet and so many other things.
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"Asbestos Gelos" (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter". A term used by Homer for invincible laughter in the face of death and mortality. |
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Rerun
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« Reply #16 on: October 30, 2008, 03:45:23 PM » |
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P&K just so you know you just don't call two transplant centers and "sign-up". Go to the transplant section and read all about the Transplant Evaluations etc.... Just trying to help. |
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paul.karen
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« Reply #17 on: October 30, 2008, 03:58:38 PM » |
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I thought that seemed kinda easy  Will check out that section Thx for the heads up |
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Curiosity killed the cat
Satisfaction brought it back
Operation for PD placement 7-14-09
Training for cycler 7-28-09
Started home dialysis using Baxter homechoice
8-7-09
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twirl
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« Reply #19 on: October 30, 2008, 04:49:14 PM » |
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you make me happy |
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paris
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« Reply #20 on: October 30, 2008, 06:05:51 PM » |
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P&K, so glad the appointment went well! Knowledge is power -- that is the battle cry of IHD. When I was diagnosed 3 years ago, the doctor said I would be on dialysis in 6 months. I didn't like that answer, so I went searching and found this great haven. Epoman would have been so thrilled to read this thread. This really was his dream - to help those know the truth and beable to take control. So, keep reading and asking questions. Start contacting the transplant center. The process takes awhile--lots of tests and evaluations, but nothing too bad. When you are listed at one center, it is much easier then to get double listed. The centers will share lots of the tests and you won't have to repeat them. It took me about 8 or 9 months to be activated on the "list". The time varies with centers and when they are able to schedule things. Good luck, you've got us all behind you.  |
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It's not what you gather, but what you scatter that tells what kind of life you have lived. |
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Rerun
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« Reply #21 on: October 30, 2008, 06:13:50 PM » |
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I was supposed to go for a blood test at the transplant center today (the dialysis center won't take blood for them). It was supposed to be fasting..... I got up and had swallowed a bite of Pop Tart and downed a coffee with cream when I remembered. I had to call and tell them I needed to reschedule because I forgot and ate something. I'm now officially on the SHIT list!! |
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graftgurl
Jr. Member
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Gender: 
Posts: 57
Does banging your head help one's memory?
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« Reply #22 on: October 30, 2008, 11:56:57 PM » |
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P&K, fear of the unknown is our worst enemy. As several people have posted, "Knowledge is power!" I am so glad you were able to resolve your denial problem. I bet your doc was pleasantly surprised. I hope you are able to put off dialysis for awhile, no matter how you end up getting it.  |
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graftgurl
CKD in fall '03
leg graft July 9 '08 (2 days after my birthday)
began hemodialysis August 21 '08
petrified to apply for transplant b/c of other health issues
Type 1 diabetic for 37 years
single mother of teenage daughter
who was a 29 week preemie due to Mom's short-term
kidney failure and resulting in emergency c-section
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twirl
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« Reply #23 on: November 23, 2008, 03:33:47 PM » |
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I think that is Sluff's Christmas card photo this is in the wrong section----- should be where Sluff is the doctor giving free exams |
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« Last Edit: November 24, 2008, 03:01:44 AM by twirl »
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Mimi
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« Reply #24 on: November 23, 2008, 11:48:53 PM » |
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Sounds good to me P&K. Congratulations and good luck.
Mimi
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Death is not extinguishing the light;
it is putting out the lamp because the dawn has come.
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I Hate Dialysis Message Board
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