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Author Topic: What do I do???????  (Read 14875 times)
lola
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I can fly!!!

« Reply #25 on: March 24, 2008, 11:04:23 AM »

Well as hard as it's been I have kept my mouth shut, BUT Otto's brother finally called today and told him he's being a baby and schedule the surgery. I still am keeping quite.
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willieandwinnie
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« Reply #26 on: March 24, 2008, 11:09:55 AM »

lola, I can only send you a big  :grouphug;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
okarol
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« Reply #27 on: March 24, 2008, 11:34:39 AM »

 :big hug: xoxoxox
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
rose1999
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« Reply #28 on: March 24, 2008, 12:14:16 PM »

Hang in there, we're all thinking of you  :grouphug;
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ODAT
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« Reply #29 on: March 24, 2008, 12:29:47 PM »

I don't know, but there isn't to many diseases that you have to prepare for with surgery before you actually start treatment....

Boxman, this really sums it up for the fear that people have. Not sure if I would call it fear or anxiety (same thing?). I think the time in advance you have to prepare is also hard to accept because in some cases you just don't feel sick yet. Having to convince someone it is in their best interest is difficult to say the least. My prayers are with you lola.
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As is your sort of mind, so is your sort of search: you will find what you desire.
skyedogrocks
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Rob showing off his pot of gold!

« Reply #30 on: March 25, 2008, 08:16:09 AM »

Lola - Sounds like Otto is very active, therefore I would push for him getting the fistula.  With the catheter he has to limit any kind of sweating or major activity because the catheter and site is more likely to get infected.  Rob had 5 fistulas because he was active and sweat a lot, so he got more infections due to this, even one that landed him in the hospital for a week.

He will need a good 5 months for the fistula to mature, so push for it now.  It sucks, it took Rob a long time to get up the courage to deal with dialysis and after the catheter, he wished he had one put in sooner.

Good luck, I know this is hard for all of you!!    :big hug:
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Wife to Rob who is currently doing Nx Stage Home Hemo Dialysis.

11/17/09 After 4 years on dialysis, Rob received a kidney from our George.  Kidney is working great!  YEAH!!!!
lola
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I can fly!!!

« Reply #31 on: March 25, 2008, 01:29:46 PM »

Lola - Sounds like Otto is very active, therefore I would push for him getting the fistula. With the catheter he has to limit any kind of sweating or major activity because the catheter and site is more likely to get infected. Rob had 5 fistulas because he was active and sweat a lot, so he got more infections due to this, even one that landed him in the hospital for a week.

He will need a good 5 months for the fistula to mature, so push for it now. It sucks, it took Rob a long time to get up the courage to deal with dialysis and after the catheter, he wished he had one put in sooner.

Good luck, I know this is hard for all of you!! :big hug:
I wish I could push but we are on a "time out". The kids and I have been busy tearing up the basement, I'm going to build a bedroom for us so Otto can have a room for Dialysis. I had hoped his brother getting on him would have gotten him on the ball but he's still just mopping around. After his appt with his Neph next week if things are still this way  :boxing; this is really affecting our kids. There not use to seeing there Dad like this.
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okarol
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« Reply #32 on: March 25, 2008, 04:53:34 PM »

I have a freind who always says "time to make a gratitude list." It's her way of reminding me that no matter the challenges I face, I still have a great deal to be thankful for. I usually flip her the bird (hehehe) then I make the damn list, and I feel better. I doubt Otto is in any mood to make such a list but if you and the kids make a grateful list and stick it on the fridge, it kind of brings home the point.
 :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
lola
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I can fly!!!

« Reply #33 on: March 29, 2008, 08:07:07 AM »

Otto finally talked :bandance; he's sooooo scared about having problems with Dialysis like b-4 and also seeing 2 of his brothers have problems. He has been struggling with not wanting to start but also not wanting to break a promise to me to at least try. He is planning to call and schedule the fistula surgery on Monday. Thanks so much you guys for your words of wisdom during my week from HELL.
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rose1999
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« Reply #34 on: March 29, 2008, 10:18:45 AM »

 :yahoo; That's great, so glad it's working out.
 :bunny:
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kitkatz
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« Reply #35 on: March 29, 2008, 10:52:02 AM »

It is hard when you love them but you want to kill them at the same time! Hubbys!
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Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
lola
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I can fly!!!

« Reply #36 on: April 01, 2008, 03:18:35 AM »

 :clap; :clap; Otto is scheduled to have his fistula placed April 18th. Thanks everyone for the support :big hug:
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Sluff
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« Reply #37 on: April 01, 2008, 03:21:23 AM »

Good for him. We are here for you both. :grouphug;
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« Reply #38 on: April 01, 2008, 11:01:59 AM »

Whew. You must be so relieved. Backing off was probably the most difficult thing! You are a hero.
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okarol
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« Reply #39 on: April 01, 2008, 06:09:44 PM »

 :2thumbsup; Good, hope it goes well!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
mysty
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I'm here.. for us.

« Reply #40 on: April 01, 2008, 06:43:25 PM »

Lola.. You holding back like that took a lot out of you I'm sure...I'm glad you listened to those that have the experience either thru their own significant others or opening up to you about themselves...
I could offer no advice.. but you get a big hug for hanging in there and being strong..
Hug those kids too...they've been stressed..   :grouphug;
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Love does not come by finding the perfect person, but by learning to see an imperfect person perfectly.
lola
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I can fly!!!

« Reply #41 on: April 18, 2008, 05:54:57 PM »

Well we just got home Otto did well considering his surgery was scheduled at 7:30 but didn't get started till 12:00. We also found out that Otto's Dr is very upset over donors being turned away because of antibodies when 5 years ago they didn't even really care about them. So the transplant team wanted to look closers at me since we were a 5/6 antgene match but our Dr said No since we have since found out about Dani. The transplant team is going to re-evaluate the other donor who were only turned away due to antibodies and look at them further so keep your fingers crossed
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monrein
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Might as well smile

« Reply #42 on: April 18, 2008, 06:04:50 PM »

Everything's crossed for both of you Lola (fingers, toes, eyes, legs and arms).   :grouphug;
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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
lola
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I can fly!!!

« Reply #43 on: May 03, 2008, 05:58:20 AM »

OK so it's been 2 weeks since Otto's fistula was done, how long before we notice anything? When I feel it I only feel a pulse (thank god) but nothing else.
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okarol
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« Reply #44 on: May 03, 2008, 08:55:28 AM »

Jenna's first fistula never buzzed or anything, and after 3 weeks they decided it needed to be done over. The second one had a strong buzz immediately. Then it took 6 months to get big enough to use.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
The Wife
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« Reply #45 on: May 03, 2008, 09:05:10 AM »

LL's fistuala also buzzed immediately.  Maybe you should let the doctor know Otto's isn't?
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monrein
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Might as well smile

« Reply #46 on: May 03, 2008, 12:30:49 PM »

Lola I think you should let the doc know immediately.  Both of my fistulas started buzzing right away and you couldn't miss it.  Best of luck.
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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
lola
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I can fly!!!

« Reply #47 on: May 03, 2008, 01:43:43 PM »

He has appt Thursday, thanks
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lola
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I can fly!!!

« Reply #48 on: May 03, 2008, 09:09:44 PM »

OK so after Otto feeling like sh@# all day my mom who's an RN came over and took his BP it was 198/125, called transplant center they said to get to the ER. Of course it came down to 153/109 then 140/97 :banghead; he had labs last friday but they wanted to re-do them and his creatine last week was 4.8 tonight 5.4 BUT his hemoglobein last week was 9.7 tonight 8.1 ??? he had his shot but it's not working??? He has appt on thursday. The DR also looked at Otto's fistula that was placed 2weeks ago and no "thrill" he said there should be a good one by now so needless to say Otto is a little  >:(
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Sluff
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« Reply #49 on: May 04, 2008, 05:45:56 AM »

Understandably so Otto. Hang in there Lola. Why does this crap have to be so complicated? I feel for you Otto.
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