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willowtreewren
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« Reply #25 on: January 28, 2010, 10:58:10 AM » |
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Wife to Carl, who has PKD. Mother to Meagan, who has PKD. Partner for NxStage HD August 2008 - February 2011. Carl transplanted with cadaveric kidney, February 3, 2011.  |
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Rerun
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« Reply #26 on: January 28, 2010, 05:52:32 PM » |
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lola
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« Reply #27 on: January 28, 2010, 06:03:03 PM » |
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rerun, his BP is PERFECT at home, but goes out of control at the clinic when the B@#$% nurse comes in.....The girls just laughed when he pointed out his BP on his daily flow sheets.....
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paris
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« Reply #28 on: January 28, 2010, 06:21:30 PM » |
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What great news! So glad four days is working for Otto. Nice to read some good news  |
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 It's not what you gather, but what you scatter that tells what kind of life you have lived. |
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Malibu
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« Reply #29 on: January 29, 2010, 02:18:23 PM » |
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I don't know why I haven't looked at this thread before. Lola, your Otto sounds just like my MM, he says he could chuck the whole thing in a heart beat, and I am sick of hearing that. The other day I said Don't you care about me at all? Why do you want to leave me all alone? Guess what? He hasn't said that he was going to quit since then. The little bas$%^&. I am having trouble with out clinic and the nurses at our Dr as well. I clicked on your name to see if you lived in Houston, TX because I thought you were surely talking about our Dr's office!  I'm not going to let them run over me anymore. Your post has inspired me!  They better act right or I'm gonna give it to 'em. Thanks! And I am so glad you took control of your situation there, that is absolutely wonderful! |
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lola
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« Reply #30 on: January 29, 2010, 05:02:48 PM » |
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lola
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« Reply #31 on: February 20, 2010, 07:34:40 AM » |
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Well Otto's been told he needs to go back to 5 days  His labs are looking really bad and his Dr basically told Otto he is going to end up 6 feet under. Otto is struggling so bad mentally as needing a machine to stay alive. We all tried to convince him to go in center for 2-3 months for a "break" and he asked to get a "break" altogether . It is so hard to see him go through this, we have tried anti depressants and also to get him to go talk to someone but he's against it all. Otto is also having issues with one of his buttonholes so they want to start a new one but that means going in every day till it is established. This week his arm hurt the entire run so of course he skipped the next day to let it "rest".  Our social worker also tried to talk to him about things but she's not the brightest bulb on the tree, as she asked me if I needed help with paper work for medicare B which I reminded her that I can not afford to add anymore for medical but that I found out Otto should get Medical assistance since he is deemed disabled by SS and her response was " oh yeah I guess I didn't even think about that" she then offered to help with the paper work, my response "no thanks I already did your job" grrrrrrrrrrr. I'm EXHAUSTED!!!!! There's my vent  |
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okarol
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« Reply #32 on: February 20, 2010, 10:52:44 AM » |
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fc2821
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« Reply #33 on: February 20, 2010, 11:05:54 AM » |
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Lola  it gets better for you both.  |
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In center hemo dialysis since Feb 14, 2007.
If I could type properly, I'd be dangerous!
You may be only one person in the universe but you may mean the the universe to someone else.
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monrein
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« Reply #34 on: February 20, 2010, 12:11:06 PM » |
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Lola it all sounds very overwhelming and I'm hoping you can both get a breather very soon. |
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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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Chris
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« Reply #35 on: February 20, 2010, 12:18:07 PM » |
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Diabetes - age 7
Neuropathy in legs age 10
Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
-glaucoma and surgery for that
-cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
- vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection
Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000
Kidney and Pancreas Transplant - December 3, 2000
Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures - Priceless
No two day's are the same, are they?
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Bill Peckham
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« Reply #36 on: February 20, 2010, 03:42:02 PM » |
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What about two days on 1 day off? You end up doing 4 treatments some weeks (one out of every three weeks) and five treatments others (two out of every three).
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http://www.billpeckham.com "Dialysis from the sharp end of the needle" tracking industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis Incenter Hemodialysis: 1990 - 2001 Home Hemodialysis: 2001 - Present NxStage System One Cycler 2007 - Present * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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Sluff
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« Reply #37 on: February 20, 2010, 04:50:04 PM » |
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Lola your family is in my prayers especially Otto. I can't begin to know what he is feeling but I definitely sense the frustration. Wish there was something more I could do to help.
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lola
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« Reply #39 on: February 20, 2010, 07:10:13 PM » |
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What about two days on 1 day off? You end up doing 4 treatments some weeks (one out of every three weeks) and five treatments others (two out of every three).
Otto is on call Saturday's and so Sunday and Monday is his day's off and he REFUSES to do Sunday as that is his only day off from work and D. I'm that this week he'll do 5 days but I'm sure he'll come up with an excuse of some sort |
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looneytunes
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« Reply #40 on: February 20, 2010, 09:07:29 PM » |
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Oh Lola...I sure hope things get better quickly for you both. I got a grin out of your rant about the social worker.....we have one of those "not so bright" ones here too. |
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"The key to being patient is having something to do in the meantime" AU
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M3Riddler
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« Reply #41 on: February 22, 2010, 04:34:00 PM » |
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Hi Lola,
I know your post is old and I believe everything is settled. You have to look at things from both points of view. Not sure, but your clinic may been billling for more treatments than your husband was doing at home. This is why they like to know if you even take one day or switch your days off. They bill for it and you know how that goes.....
Even though his labs are good now, this may affect him long term with the larger molecules.... Remember, kidneys work 24/7. But I do understand the choice he has made and that should be his right.
Im thinking that Davita is more interested in the billing part.
///M3R
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____________________________________ Peritoneal - 13 years NxStage Since 4/06 3 Transplants Admin of Dialysis Discussion Uncensored on Facebook ___________________________________ |
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lola
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« Reply #42 on: March 31, 2010, 03:20:59 PM » |
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Well Otto is going back to in-center....They want him to go to 6 days and he say's OH H@#$ NO!!!! I think he (we) need a break from Davita or should I say a few staff members. I have such mixed emotions on this not sure what to say.............Otto's phosphorous is 10.9 they were suppose to send him something new to try 3 weeks ago when it was 8.2 but of course we have yet to see it |
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okarol
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« Reply #43 on: March 31, 2010, 04:03:18 PM » |
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Six days?? For how long each day? Oh man, I don't blame him for saying no. How are you doing lola??
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Rerun
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« Reply #44 on: March 31, 2010, 04:36:40 PM » |
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He may feel better going six days a week. It is the up and coming dialysis.
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lola
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« Reply #45 on: April 01, 2010, 05:46:12 AM » |
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I think his "run" time is around 2.45, and getting him to do 5 days a week is a joke but now 6. I'm doing ok I think
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lola
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« Reply #46 on: April 01, 2010, 08:27:31 AM » |
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so finding a center for Otto is turning into a challenge. Otto needs M W F around 9am due to his work schedule and also the kids, I was told he can be on a waiting list since people do pass away mmmmmmmmmmmmThanks!!!!
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lola
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« Reply #47 on: April 01, 2010, 02:10:50 PM » |
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Well we finally got into Otto's old unit, they made some calls and found someone who was willing to switch  when I called the B@#$% nurse at Dahhvita she was so rude and said she wasn't going to help make the call to the new center and set it up. I informed her that was fine, I had already given her name to the clinic mgr who would call her and let her know she can't act this way.... |
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lola
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« Reply #49 on: April 03, 2010, 06:53:20 AM » |
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Otto is set to start in-center on Friday, yesterday as he was coming off wall-e his BP crashed I actually thought I was gonna have to call 911. Every day this week an hour or 2 after he's done he has started to feel very light headed and breaks out in a cold sweat. I have watched this get worse the more dialysis he does, when he is on 4 days he feels better then when he is on 5. I have asked if his dry weight is off or if there is something wrong with the unit, but I just keep hearing it's because he's not doing enough dialysis. I really think had he been shown some compassion and had someone listened to him he would not be making the switch. I have no idea what it is like to be a dialysis pt but I try to always show compassion, just wish Otto's unit would have done the same. I am scared to death as we watched Otto "wither" away in-center but pray to God this time is different.. We are going to go back to Fresinius and when he was with them before everyone was always very nice to deal with. Poor little Cierra was in the room yesterday when Otto's BP crashed and for the rest of the day she would not leave Otto's side  Thanks again everyone for all the support |
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