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Author Topic: My Rollercoaster ride.  (Read 3935 times)
WBMW
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« on: November 26, 2007, 11:07:39 AM »

On November 15th my youngest sister went to my mom's house early in the morning only to find her in bed unable to move and she was babbling.  I made it my mom's in five minutes, usually a fifteen minute drive.  Mom is 56 years young, she has been diabetic for as long as I can remember.  Two years ago she was diagnosed with CHF.  On November 15 she now has total kidney failure.
I'm the oldest of her four daughters and it's been crazy. 
I'm really pissed off at her regular Doctor for not knowing something sooner.  She goes to his office weekly and they draw blood every time.  How could he not have known?  She had all the symptoms.
I am 35, married with two kids and I will be my moms advocate and hopefully her living kidney donor.
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Love is a wonderous thing
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #1 on: November 26, 2007, 11:14:43 AM »

 :waving; Welcome WBMW -

 :cuddle; Sorry about your mom -- I don't know why doctor's can miss things like that, but it happens more than I like to think about.
I hope you find lots of info and support here. There are many threads about diabetes in addition to renal posts.
I look forward to hearing more from you!


okarol/moderator
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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
kidney4traci
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« Reply #2 on: November 26, 2007, 11:31:14 AM »

So sorry to hear of your families new health issues.  Glad you found this sight, feel it is so helpful to me to search topics and just to know there are others out there with similar problems.  My family gets tired I think of dialysis this and kidney that, so this sites helps there too.  Best of luck to you know that you have found the problem.  Once she gets started on dialysis, she will start to feel much better. 
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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!!!
willieandwinnie
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« Reply #3 on: November 26, 2007, 11:47:51 AM »

 :welcomesign; MBMW

I'm sorry to hear about your Mom. This is a great site for information and support. Stay strong.

willieandwinnie
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"I know there's nothing to it, but I want to know what it is there's nothing to"
WBMW
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« Reply #4 on: November 26, 2007, 11:57:47 AM »

 :thx;   I have so many questions so I hope you are all prepared.

What should my mom start to do once she gets home from the hospital??  Special diets???  Special drinks??  Find a new doctor???  Will she be able to drive or should my sisters and I start up a pick up and drop off schedule???
Where do I find these social workers you all speak of??


Mom's blood is A+ and so is one of my sisters' I'm O+
How long before we know more about a transplant??
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Love is a wonderous thing
Sluff
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« Reply #5 on: November 26, 2007, 12:13:15 PM »

Welcome to Ihatedialysis.com WBWM,

Thanks for becoming your Mothers advocate as it is a difficult thing to do but yet needed. Feel free to search the site and read as much as you want and ask questions. It may take a little time to get all the answers you seek but I'm sure you will find them or another member will have the answers you seek.

Sluff/ Admin
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donnia
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me and my donor Joyce

« Reply #6 on: November 26, 2007, 12:23:06 PM »

Welcome.  You will find lots of support here.  :welcomesign;
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
sisterdonor
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« Reply #7 on: November 26, 2007, 12:29:46 PM »

She  should  have a nephrologist and go  over  options with  him/her.  If your Mom opts for transplant your nephrologist can recommend a transplant center.  If  so, first your Mom  has  to be tested and accepted to  be  a  recipient.  If she passes her evaluation then  you can contact  them to get  the  donor evaluation package and you and/or  your sister  can begin  the  testing process.  You will be assigned to a donor coordinator and your mom  should have  a  recipient coordinator as  well  as  a financial coordinator.

The  testing process took me 3 weeks  with  surgery scheduled 8 weeks after that was  done so  she  may have to go  on dialysis  for awhile  depending on what her  nephrologist  says.

If  she  is  A then both of you can  be tested  to  donate  since  O  blood types  can  also donate to A recipients.
« Last Edit: November 26, 2007, 12:32:45 PM by sisterdonor » Logged
paddbear0000
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Dogs & IHDer's are always glad to see you!

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« Reply #8 on: November 26, 2007, 12:47:32 PM »

 :welcomesign;
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********************************************************
I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
Twitter.com/NKFKidneyWalker
www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
Romona
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« Reply #9 on: November 26, 2007, 01:39:34 PM »

Hi WBMW, to answer your question of why the doctor may not have picked this up, someone I met through a kidney foundation said that many doctors do not recognize kidney disease. They may not recognize markers that show in blood work. With your Mom being diabetic he should have been looking closely at her. You have every right to be ticked.
Find a good nephrologist for her. Don't forget to ask questions here. Everyone is awesome! :welcomesign;
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Wattle
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« Reply #10 on: November 26, 2007, 01:43:53 PM »



 :waving; Welcome
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
glitter
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« Reply #11 on: November 26, 2007, 02:41:03 PM »

 :welcomesign;


there is so much information in these forums- just pick a subject and start reading. spend a few hours reading -alot of your questions are answered in multiple threads, and you will learn alot.
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER

caregiver to Jack (he was on dialysis)
RCC
nephrectomy april13,2006
dialysis april 14,2006
paris
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« Reply #12 on: November 26, 2007, 03:30:24 PM »

 :welcomesign;  You have come to the right place for answers and support.  I am fortunate that my GP noticed in routine blood work that my levels weren't normal and sent me to a nephrologist.    I am so sorry for what your Mom is going through.  She and I are about the same age and same age children.  I was scared when I ended up in the hospital, not knowing what was ahead.  Not knowing is worse than knowing and doing something about it. Learn all you can.  It will help her if you are very informed about treatments and options. She is going to get through this; it will take some time to get things sorted out. Some days will be better than others. We are here for all of you.  This is a wonderful site and we all have become very close. I can't tell you how much these people have helped me.  Let us know how your Mom is doing.  Take a deep breath; this ride goes on for awhile. :grouphug;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
boxman55
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« Reply #13 on: November 26, 2007, 04:50:17 PM »

Welcome WBMW, you need to bring your questions up in the forum but, I am 52 and have no problem driving to and from dialysis. Also the dialysis center that you choose will have a social worker on staff to help with everything. Also fluid intake should be minimal and you will need her to stop consuming foods with high potassium and phosphates ie potatoes, bananas, tomatoes etc...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
Ang
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« Reply #14 on: November 26, 2007, 07:27:35 PM »

 :welcomesign;wbmw,good  to  have  you  aboard,
 "information  is  power"
 the  doctor  needs to be  reported,so  he  can  be  held  accountable  for  droppiing  the  ball  big  time.
 good  luck  with  it  all. :thumbup;
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Bajanne
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« Reply #15 on: November 26, 2007, 09:26:20 PM »

Welcome to our community!  We are glad you decided to join us on your Mom's behalf.  This site is one of the best things to happen to me just the month before I started dialysis.  It really prepared me for what I was going to face, and now it is my second family.
I was on a radio programme last year which was dealing with the subject of dialysis.  My nephrologist was also a guest on the programme, and when he was asked to give his final comments, he was challenging doctors to be more vigilant in seeing the signs of renal failure.  He said there were too many people who were seeing their doctor regularly and yet the condition went undiagnosed until it was critical.
Take advantage of all this site has to offer.  Read as much as you can, ask as many questions as you can, and please keep posting.  Let us know how your mother is doing.  We will be with you through this entire journey, if you let us. :grouphug;


Bajanne, Moderator

A special greeting to your mom - we are contemporaries (I am 57).
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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! :grouphug;
Joe Paul
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« Reply #16 on: November 27, 2007, 02:01:36 AM »

Welcome WBMW, good to have you aboard.
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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
Laurie
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May 13, 2008

« Reply #17 on: November 27, 2007, 06:42:46 AM »

 :welcomesign;
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March 7, 2001 - Complications after C-section caused kidney failure
March 2001 - December 2001 - Hemo Dialysis
December 2001 - Kidney function improved dialysis no longer necessary
October 2006 - Kidney function started to decline
May 9, 2007 - Listed at Baylor Dallas and Fort Worth
October 12, 2007 - Started PD
May 13, 2008 - Kidney Transplant from a deceased donor
Hawkeye
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« Reply #18 on: November 27, 2007, 07:08:55 AM »

Hello and  :welcomesign;
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It's not easy being green.
KR Cincy
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Home hemodialysis since May 07

« Reply #19 on: November 27, 2007, 11:49:19 AM »

 :welcomesign;
You are at the beginning of quite a roller coaster ride...you'll learn a new language, meet some fascinating (?) new professionals, rack up co-pays like you wont believe...it'll wear you out and frustrate you and anger you, but you keep on going for your mom and for your family. Let us be your sounding board, sparring partner, broad shoulder, whatever you need.
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Not giving up...thanks to Susan.
kitkatz
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« Reply #20 on: November 27, 2007, 09:24:47 PM »

Wow! It sure makes you mad when doctors do not see what is in front of their faces!  Welcome to our site.


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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 #21 on: December 20, 2007, 07:46:22 PM »

Hello and welcome ,  Remember that this disease is affecting your mother also . Need to keep her
in the loop as you learn things , if she is capable to handle this information .  A lot of information will
flow your way . Try not to let it discourage you as you receive it . Most here on this forum have been through it
and will help if asked.  Many here are caregivers also not just patients.

Katonsdad
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Diabetes 1976
Eye issues 1987
Kidney Failure 1997
CAPD 1997 , Stopped 1997 due to infections evey 28 days
Started In Center Hemo 1997
Received Kidney/Pancreas transplant 1999 at UCLA
Wife and I had son in 2001 , by donor for my part (Stopping the illness train)
Kidney failed 2011 , Back on Hemo . Looking to retransplant as the Kidney is still working



Soft kitty, warm kitty,
 little ball of fur,
happy kitty,sleepy kitty,
 purr purr purr ::
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« Reply #22 on: December 23, 2007, 10:33:59 AM »

 :welcomesign;
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ESRD 11/95
1st Transplant 7/1996 (failed; Nephrectomy 12/1996)
2nd Transplant 3/1999 (lasted 6 years)
3rd Transplant 5/2007 (lasted 4 years)
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