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Author Topic: Transplant coordinator called me  (Read 49380 times)
Simon Dog
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« Reply #25 on: June 26, 2015, 01:51:38 PM »

Oh! Colonoscopy!  :sir ken; :sir ken; That one isn't much fun. At least the prep for it isn't. Be sure to tell them you are a dialysis patient so they have you do the kidney friendly prep.
I always email my neph when I get an Rx from another MD to give him a chance to object (he's very good about replying).

There are two common protocols for sedation - fentanyl+versed or milk of amnesia (propofol).   The former is cheaper and (at least in the hospital I use) does not require an anesthesiologist.  The later is more expensive (a few hundred extra for the anesthesiologist), and some insurance companies balk at the extra cost.  But, it's a lights out procedure with no after probe grogginess.  Just be sure to leave your phone on "record" mode unless you are in a state like MA where doing so is a felony.
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dublin
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« Reply #26 on: June 26, 2015, 02:04:08 PM »

Hi kitkatz go for it why not and the best of luck to you wishing you well :clap; :2thumbsup;
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kitkatz
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« Reply #27 on: June 26, 2015, 03:48:52 PM »

6/26/2015   Cardiologist wants two types of angiogram. One is the arterial line the other is the veinous line to check heart and lungs.  Seems to think i may have a hereditary lung problem or else the sticky valve is sticking more than it should.  They will do both at the same time so only one procedure, I am hoping.
We need to sort this out and he seemed to think that is the best way to do it. Otherwise he cannot give me clearance.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

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
MooseMom
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« Reply #28 on: June 27, 2015, 08:29:29 AM »

Let us know when the two angiograms are scheduled!  I hope they can do both in one go.
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"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."
kitkatz
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« Reply #29 on: July 01, 2015, 05:40:03 PM »

I am logging the appointments for transplant evaluation here so I have instant access to it in case I need it.
So.... an update....

6/30/2015- Endoscopy and colonoscopy- the endoscopy showed stomach was good.  Colonoscopy was incomplete due to scar tissue.  Doctor said if follow up is wanted, then do the barium enema next. Sigh.  All that prep.....

7/1/2015-  Abdominal scan and doppler scan plus mammogram completed.  I feel like I have gone a round with a boxer.  I am sore all over.  The tech had to press hard on the abdomen to see the veins and arteries, and then my organs.  Then the boobs got squished.

I spoke to transplant coordinator 7/1/2015, and told her that gynecology and internal med doctor will not let me do a pap smear for transplant evaluation because the test I have is good until 2016. She says " They can't dp that."  I said: " That is what they told me."   Trapped like a rat again in the middle.  She is emailing my internal medical doctor to straighten it out.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

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
MooseMom
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« Reply #30 on: July 01, 2015, 08:18:13 PM »

My tx coordinator accepted my pap smear results from the previous year, so why won't yours?  Most insurance won't pay for such tests repeated within one year unless there is good cause.  Well, let them sort it out amongst themselves.  Good luck!
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"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."
kitkatz
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« Reply #31 on: July 01, 2015, 11:35:54 PM »

2011 was the last pap smear but nothing was abnormal so every five years they say.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

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
willowtreewren
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« Reply #32 on: July 02, 2015, 06:30:23 AM »

Huh! I've been getting pap smears every year for as long as I can remember.

Whoops. TMI!  :yahoo;

I hope they can sort this out among themselves. You have ENOUGH to do!  :cuddle;

Aleta
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Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
PrimeTimer
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« Reply #33 on: July 02, 2015, 12:27:32 PM »

I am logging the appointments for transplant evaluation here so I have instant access to it in case I need it.
So.... an update....

6/30/2015- Endoscopy and colonoscopy- the endoscopy showed stomach was good.  Colonoscopy was incomplete due to scar tissue.  Doctor said if follow up is wanted, then do the barium enema next. Sigh.  All that prep.....

7/1/2015-  Abdominal scan and doppler scan plus mammogram completed.  I feel like I have gone a round with a boxer.  I am sore all over.  The tech had to press hard on the abdomen to see the veins and arteries, and then my organs.  Then the boobs got squished.

I spoke to transplant coordinator 7/1/2015, and told her that gynecology and internal med doctor will not let me do a pap smear for transplant evaluation because the test I have is good until 2016. She says " They can't dp that."  I said: " That is what they told me."   Trapped like a rat again in the middle.  She is emailing my internal medical doctor to straighten it out.

Sounds like you were hit by a mack truck. Hope you get the weekend off to do whatever the heck YOU want to do and if you have to, just tell everybody else to go jump in a lake.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
kitkatz
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« Reply #34 on: July 07, 2015, 07:24:39 AM »

July 6-7th, 2015. Sleep Study or as I called it "torture by wire in bed".
I went to Kaiser's sleep lab last night and did the sleep study.
The tech was very nice and wired me up.
Results will be back I guess when they get back to the doctors.
The last hour or two were sheer torture. I have no idea how long I was asleep but when I came awake, I was ALL the way awake.
It was sheer torture and I had to use all of my adult coping techniques to lie there and try to pretend to sleep.
It is over now, and one less thing to do on the pre transplant evaluation list.

Pic#1- Wired for sound

Pic #2- Close up of wired face

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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

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
MooseMom
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« Reply #35 on: July 07, 2015, 07:29:43 AM »

Wow!  Those photos look like something out of a post-apocalypse movie!

I'm glad that's over!
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"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."
willowtreewren
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« Reply #36 on: July 07, 2015, 08:40:21 AM »

Kit, you probably should have just gotten up when you came awake. With the leads and sensors they can tell pretty much if you are asleep or awake.  :secret;

I've been through that. It makes a mess of your hair, too!  :rofl;

Now on to your NEXT adventure!

 :2thumbsup; :2thumbsup;

Sending love.

 :guitar:

Aleta
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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. :)
Vt Big Rig
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« Reply #37 on: July 07, 2015, 09:16:22 AM »

I would be interested in your "results'. I do not know anyone who has had a "sleep study", including me, who was not told they need a CPAP! Another doctor to visit. :banghead;
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
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« Reply #38 on: July 07, 2015, 06:46:40 PM »

You poor thing!!  I'd have nitemares after something like that. I suppose they hear a lot of colorful language from patients.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
cattlekid
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« Reply #39 on: July 07, 2015, 07:05:20 PM »

I've had three sleep studies over the years and as a person with obstructive sleep apnea, I can tell you that we can pretty much sleep through anything.  A few wires and probes stuck here and there are no problem.

This also comes from someone who dozed off during a breast biopsy and an MRI.   :rofl;

You poor thing!!  I'd have nitemares after something like that. I suppose they hear a lot of colorful language from patients.
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kitkatz
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« Reply #40 on: July 10, 2015, 06:42:24 PM »

Pulmonary Lung Function Test today 7/10/2015. Did much better than last time I did one
I received a call from transplant coordinator telling me the TB blood test shows positive for TB in it.  So I will probably be hearing from infectious disease doctors next.
I have been treated in 2007 as a precaution for positive TB skin test during my last pre-evaluation for transplant.

I also got a call from the doctor and finally the pap smear is scheduled for next Thursday. What an argument that was to get! Going to keep that appointment come hell or high water.

Craziness still going on.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

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
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« Reply #41 on: July 10, 2015, 08:13:22 PM »

I tested positive for and was treated for TB, too. The infectious diseases doctor told me I'd probably always test positive now. I hope they don't make you go through treatment again.
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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
okarol
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« Reply #42 on: July 11, 2015, 12:35:38 AM »

July 6-7th, 2015. Sleep Study or as I called it "torture by wire in bed".
I went to Kaiser's sleep lab last night and did the sleep study.
The tech was very nice and wired me up.
Results will be back I guess when they get back to the doctors.
The last hour or two were sheer torture. I have no idea how long I was asleep but when I came awake, I was ALL the way awake.
It was sheer torture and I had to use all of my adult coping techniques to lie there and try to pretend to sleep.
It is over now, and one less thing to do on the pre transplant evaluation list.

Pic#1- Wired for sound

Pic #2- Close up of wired face

Good grief! How do they expect anyone to sleep with all that crap on?
If you pretended to be asleep, how will they know if there's a problem.
I personally think all this sleep apnea stuff is going to go away when the next new money maker comes along.
Good luck with the rest of your tests Kit.
When are you coming to see me??  :waving;
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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
kristina
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« Reply #43 on: July 11, 2015, 01:30:26 AM »

Best wishes to you kitkatz
and I am sure you pull through all these medical examinations
and I continue to keep my fingers crossed for you.
Good-luck-wishes from Kristina. :grouphug;
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                                          ...  Oportet Vivere ...
kitkatz
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« Reply #44 on: July 15, 2015, 08:07:03 AM »

7/14/2015  I had the angiogram 
I loved the Dr's name -He was Devine. LOL
It went well and he was willing to use the pain meds liberally.  If I said Ouchies He would put more on board.
I have had some tests where that was it, what I got first was what I got and had to suffer through the pain.
This time was fine.  I ache today down my right side.  I was at Kaiser 7a.m. to 5p.m.  Then had dinner, then
went off to spend the time at dialysis.   
I am worn out today. Not doing anything perse.

Doctor said heart valve looked good just being sticky like it has for years.  All looked good.

I am in recovery mode today.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

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
MooseMom
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« Reply #45 on: July 15, 2015, 11:21:23 AM »

This is good progress, KK, and it makes me happy.
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"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."
kitkatz
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« Reply #46 on: July 16, 2015, 03:38:01 PM »

7/16/2015- Infectious disease doctor appointment. Called me at 7:45a.m for an appointment at 9:30a.m. Lady over the phone gives me the wrong building and floor to go to check in at.  I hate when that happens. Kaiser Fontana is huge. We ended up walking from building to building. I am to do three sputum samples and take them to the labs each morning so they can get them cooking to see if I have active TB.  I do not think these docs realize what they are asking.  Each morning for three days I have to do a spit take and then drive to a Kaiser lab and drop it off.  I will doit, but it is a pain the ass.

7/16/2015- Pap smear has been completed in spite of the hell they put me through to get one.

Everything on the list has been completed.  Now to wait.  From 6/17/2-15-7/16/2-15- not to bad lining it up and slamming it down.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

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
PrimeTimer
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« Reply #47 on: July 16, 2015, 09:35:31 PM »

Truly remarkable, to say the least!  :bow;
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Simon Dog
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« Reply #48 on: July 17, 2015, 12:01:50 PM »

Ask if Kaiser will accept Fedex or UPS of the samples.    I drop my monthly tissue typing blood samples off at a UPS box within walking distance of my house.
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kitkatz
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« Reply #49 on: July 22, 2015, 10:10:59 PM »

I dropped three samples off Friday, Tuesday and Wednesday. Now we wait for results and meds and appointments.
I now have an appointment with infectious disease early September.  I got it all completed, now we wait to see if Kaiser will move my work up onto the transplant hospital.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

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
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