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Author Topic: My present situation  (Read 6173 times)
Bajanne
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« on: June 30, 2011, 07:56:46 AM »
Haven't been posting much recently about my present state.  It is not good.  I have been dealing with fluid overload, severe cramping and low blood pressure which brings with it extreme fatigue and blurred vision.  I have been going to D with at least 4-5kg after weekends.  If they try to take off even 3.5kg, they can't. The cramping and low blood pressure would make them take me off.  Last week, they came to the conclusion that my dry weight needed adjusting.  Nurses can only add on .5kg at our centre.  On Friday the resident doctor said they could add another .5.
Monday, I went ot dailysis with about 3kg.  However because of my cramping, etc., again they couldn't take all off.  I went home with .7kg on.
Yesterday, Wednesday, luckily, I had a day off from work.  I was feeling so awful and hot, I just went to the hospital and sat in the ER where there is a great AC  I went to dialysis early and weighed in at .6kg over (that means I lost instead of gaining), so they took off 1kg.  EVerything went fairly well, except again, I had lots of low BP bouts during the session, but thankfully, no cramping.  When I came off, however, I didn't feel any better.  Things just seem to be getting worse.
We are having our monthly nephrologist visit tomorrow.  I hope he can help me.  Even this morning I had severe blurred vision. I don't want to die right now.  I said goodbye to my father, two brothers and recently my sister from CKD. My daughter is very worried about me and every day begs me not to leave her.
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rsudock
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« Reply #1 on: June 30, 2011, 08:21:19 AM »
Oh Bajanne I am sorry you are dealing with this...it is hard trying to get the fluids under control isn't it? What about sucking on ice cubes when you are thirsty during the weekend, to keep from getting to fluid overloaded?

Another question can you switch to a incenter nocternal D program? That way you could probably get more fluids off without the cramping and low blood pressure. Plus your blood work would get much better since you would be getting more D. I think this would be a wonderful option for you....

Please hang in there. I know with Muriel's passing it has been rough.  Keep on fighting sister!!!

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
boswife
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us and fam easter 2013
« Reply #2 on: June 30, 2011, 09:16:00 AM »
ok rusdock, im with ya once again  ;D  (dont know when i havent agreed with ya..lol )  Bajanne, i really think this is a perfect time (mabie not convient) for you to think about what rusdock said.  Seems it needs to go longer stretches to get off the fluid w/o cramping.    That darn cramping is awful!!  hubby had a bit last night but it was from stretching wrong (and im sure kidney issues) and was resolved quickly.  Has had it horrably in the past and we both suffer as he wakes up in pain and i run for the hot towles to help soothe.  I so hope something good comes of your 'visit' with the neph...   :cuddle;  :pray;
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im a california wife and cargiver to my hubby
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We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
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AguynamedKim
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« Reply #3 on: June 30, 2011, 09:41:22 AM »
Bajanne, I really hope that you can increase your dialysis one way or another (mroe sessions, longer sessions) to help with the fluids.  Maybe they can take the fluid off at a slower rate to help with the low BP as well.  All the best, Bajanne.  We're all thinking about you.
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okarol
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« Reply #4 on: June 30, 2011, 10:38:00 AM »
Dang it!!  :(
I am sorry its been so difficult. I hope the neph can help you find a solution.
Take care!!!  :cuddle; :cuddle; :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.
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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 -
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MooseMom
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« Reply #5 on: June 30, 2011, 11:03:01 AM »
That sounds really awful, not to mention frightening.  I'm eager to hear what solutions your neph comes up with.
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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."
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« Reply #6 on: June 30, 2011, 12:13:23 PM »
Thinking of you, hang in there!!   :cuddle; :cuddle; :cuddle;
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Diagnosed with  PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was  "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
galvo
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« Reply #7 on: June 30, 2011, 04:01:35 PM »
Bajanne, my thoughts are with you.
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Galvo
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« Reply #8 on: June 30, 2011, 04:37:50 PM »
Bajanne, you poor thing! I am keeping a good thought for you and the strong hope that your nephrologist has answers.

Do let us know how its going, and you know as well as anyone that we are here just waiting to offer our support.
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« Reply #9 on: June 30, 2011, 04:38:20 PM »
I had them stop the sodium modeling during my treatment, they were loading me up with salt each time. Since they stopped the sodium I do not cramp and my fluid retention is way down.
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Ang
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« Reply #10 on: June 30, 2011, 07:48:15 PM »
low blood pressure is a sure sign that your base weight is low
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Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #11 on: July 01, 2011, 01:33:36 AM »
Thank you all for your caring thoughts.  I love my IHD family :grouphug;
@rsudock - they don't have any other type of HD here.  I would have loved to do nocturnal.  My time was recently cut to 3½ hrs because I could not leave my job earlier and they have a little nursing shortage here so the hours were changed.
I have been doing better with fluid intake, but maybe I have to wait a while before I feel better.
Thanks again, everyone!
I will see the neph today.  Keep your caring thoughts and prayers going please.
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I LOVE  my IHD family! :grouphug;
Chris
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« Reply #12 on: July 01, 2011, 02:11:09 AM »
Sorry to hear of your troubles bajanne, I hope things improve and you start feeling better.
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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
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kristina
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« Reply #13 on: July 01, 2011, 02:16:07 AM »
Hello Bajanne,

I do hope you feel better soon.

Best wishes from Kristina.  :grouphug;
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« Reply #14 on: July 01, 2011, 07:18:09 AM »
Sweet Bajanne, I am so sorry you are feeling this way.  It has to overwhelming to have such a long family kidney history. You know the reality of this disease.  But, you are strong, you have great Faith, and you have so many people who love you.   I pray the neph will have a good solution and things get better soon.     

I have always loved your phrase "saying healing prayers"  , so I am sending and saying healing thoughts and prayers  to our precious friend, Bajanne.     :cuddle;    :pray;     :pray;      :pray;
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Bajanne
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« Reply #15 on: July 01, 2011, 08:07:24 AM »
Thank you all so much.  Of course, you must all know that this day that I will finally see the nephrologist I am feeling absolutely fine!!  It is a good thing that my records will show what I have been going through!
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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;
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #16 on: July 01, 2011, 08:11:04 AM »
Just asked Samano to come with me when I meet the nephrologist.  Guess what!  She said that she had a dream that my doctor told her I had seven days to live!  I am taking that as seventy years!!!
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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;
billybags
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« Reply #17 on: July 01, 2011, 08:22:41 AM »
Hope all goes well.
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aharris2
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« Reply #18 on: July 03, 2011, 08:29:51 AM »
Quote from: Bajanne on July 01, 2011, 08:07:24 AM
Thank you all so much.  Of course, you must all know that this day that I will finally see the nephrologist I am feeling absolutely fine!!  It is a good thing that my records will show what I have been going through!

Bajanne?
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Life is like a box of chocolates...the more you eat the messier it gets - Epofriend

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« Reply #19 on: July 03, 2011, 04:32:55 PM »
Quote from: Bajanne on July 01, 2011, 08:07:24 AM
Thank you all so much.  Of course, you must all know that this day that I will finally see the nephrologist I am feeling absolutely fine!!  It is a good thing that my records will show what I have been going through!

Of course, it seems to always happen when you finally get an appointment!  :urcrazy;
Best wishes that you get some help. Take care!  :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
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« Reply #20 on: July 03, 2011, 04:52:29 PM »
Thinking and Praying for you Bajanne!   :pray;

lmunchkin      :flower;       :grouphug;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
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Bajanne
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« Reply #21 on: July 04, 2011, 07:51:22 AM »
Update - The visit didn't go very well in terms of getting help.  I was feeling so well that it was hard to explain what was going on.  He seemed in a hurry and that made it a bit difficult for me.  He told me that I need to keep records The thing is, I have no idea what causes the bad feelings, and no idea what makes me feel better!
I even went to the movies last night - watched Cars 2, Mr. Popper's Penguins, and Bridesmaids - one after the other!  I was there from 2.30 to 9.00 p.m.!!
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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;
Chris
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« Reply #22 on: July 06, 2011, 10:09:49 PM »
In those situations I just take notes from when I get up on how I feel, when I ate, what I ate, when I started to feel something odd and what it felt like, when I took meds, how much I weigh So when the symptoms occur, try to be as descriptive as possible and take note when it goes away what you were doing at the time. A voice recorder maybe better for this so you can type it out later or write it down.
 
Good Luck with next visit.
 
Also, don't let him rush you, he spent time with other patients and should spend the same amount with you so you don't feel uneasy and rushed to get what's on your mind out and forget something to say.
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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?
MooseMom
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« Reply #23 on: July 06, 2011, 10:37:47 PM »
I like Chris's idea!  At least you're feeling better...that's something!
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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."
galvo
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« Reply #24 on: July 06, 2011, 11:04:25 PM »
That's a movie marathon, Bajanne. Which of the three did you enjoy most?
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Galvo
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