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Author Topic: fed up  (Read 8932 times)
billybags
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« on: July 26, 2011, 08:16:08 AM »

We had a good weekend, (daughters wedding)  husband struggled through the day but he made it. Last night I had to call out the paramedics, he could not breath, for the last few days he has had trouble breathing, finds it hard to walk around, climb stairs  and was coughing like mad. They checked him over and said it could be a chest infection. had to have the GP in this morning he said it could be his heart and it could be fluid. Yes I could say it is fluid but he is on a restriction and does watch it. He is dialysising OK, good fluid pull off, tea time and overnight. So what do we do.We are as we were, I am so fed up with all this shit. Sorry I had to vent.
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looneytunes
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Wishin' I was Fishin'

« Reply #1 on: July 26, 2011, 09:02:41 AM »

Oh BB...it sure seems like a positive gets too quickly folllowed by several negatives every time, doesn't it?  Is the GP offering anything as far as treatment?  I sure hope it gets cleared up quickly.  It's so hard to have a good weekend and then watch things spiral downhill.  Sometimes I think when we have good days that we get our hopes up that things are going to be better.  Then the bad days happen and we come crashing back into reality. 

Am sending you a huge cyber-hug my friend.   :grouphug;
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"The key to being patient is having something to do in the meantime" AU
monrein
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« Reply #2 on: July 26, 2011, 10:09:19 AM »

 :grouphug;   Wish there were more I could do.   :cuddle;
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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
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Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
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« Reply #3 on: July 26, 2011, 10:23:37 AM »

 :cuddle; Best wishes. It's very frustrating when there's no easy diagnosis and remedy. I feel your frustration!
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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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Found a swap living donor using social media, friends, family.
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del
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« Reply #4 on: July 26, 2011, 12:00:47 PM »

Did they check to see if it was fluid??  He could have no swelling but still have fluid.  I hate when doctors say it could be this or it could be that and don't check to see what the cause is!!   :grouphug; to you.
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Ang
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« Reply #5 on: July 26, 2011, 07:08:43 PM »

hope he's feeling better soon :thumbup;
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lmunchkin
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« Reply #6 on: July 26, 2011, 07:46:37 PM »

BB, there is not much that I can say that would help you through this Dreadful Disease!  But you are not alone!  We all have ups & downs in this world, guess just do the best you can!  Isn't that all we can do?  Hang in there girl, and I do know & understand your frustrations!

Hope things get better for you both & God Bless!

lmunchkin      :flower;
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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
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
boswife
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us and fam easter 2013

« Reply #7 on: July 26, 2011, 08:44:49 PM »

I feel ya  :'(   It's awful to say the least.  Bo just had a bout with coughing and thankfully, dr xraed his lungs and and there it was..... fluid build up.. Took it off in about 3 days and is all better.  But........ thats cause we SAW it and so could do what was needed.  Sure hope they get to the bottom of this for the both of you...   :grouphug;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Poppylicious
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« Reply #8 on: July 27, 2011, 03:33:23 AM »

So the paramedics decided not to take him into hospital and your GP also decided he didn't need to go even though it could be his heart, or could be fluid build-up?  How is he today?  Is he still breathless?  Can you phone your neph (I would think he needs to be made aware as he knows more about your hubby's condition than either the GP or the paramedics) directly?

I hope this gets sorted soon.

*huggles* for both of you.
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- wife of kidney recepient (10/2011) -
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Everything was beautiful, and nothing hurt.
The Noob
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« Reply #9 on: July 27, 2011, 05:53:54 AM »

oh can so relate!!!
if anyone needs some great kidney docs and surgeon in the NW Ohio area, we have some wonderful ones.
it was still diligence on my part through the rough storms. but i believe these docs saved hubbys life. just wish we'd had them from the get-go. :cuddle;
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billybags
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« Reply #10 on: July 27, 2011, 11:16:17 AM »

I feel like the GP has written us off. he is very reluctant to do any thing because he does not understand kidney failure and just refers us back to the neph. We are seeing him Friday.
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lmunchkin
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"There Is No Place Like Home!"

« Reply #11 on: July 27, 2011, 04:11:53 PM »

BB, if you have a neph that you and hubby are comfortable with, see if he/she can suggest a good cardiologist or a pulmonary doctor!  The breathing is what so frightening! If GP wants to write him off, than so be it!  There are plenty others out there!

I hate this for you both.  It can't be easy!

lmunchkin      :flower;
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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
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
Jean
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« Reply #12 on: July 28, 2011, 12:54:14 AM »

So sorry to hear of your frustrations BB. Vent all you want or need to, we are here for you. Hope your neph can get this taken care of promptly.    :pray; :pray;
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One day at a time, thats all I can do.
Poppylicious
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« Reply #13 on: July 28, 2011, 08:00:18 AM »

I suppose I can understand the GPs reluctance somewhat.  I hope the appointment with your neph goes okay tomorrow ... hopefully he'll be able to help/put your mind at rest.

*huggles*
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
looneytunes
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Wishin' I was Fishin'

« Reply #14 on: July 28, 2011, 11:05:45 AM »

Thinking of you, BB.   :cuddle;
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texasstyle
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« Reply #15 on: July 28, 2011, 12:40:53 PM »

Vent away!!!!!!!! Lord knows I've done it a million times right? lol  If he has congestive heart faulire, fluid build can hapen easily even on a restricted diet. With that condition the heart can not pump adequetly and you get "congested" with fluid . My guess is they put him on a lasix in the hosp. and how is he doing right now? Again, "if" it from CHF, he will have to watch his exertion etc, time in heat, etc.... Please let us know how he is and what the diagnoses finally is. Kow just how tired you get. Sometimes I feellike my whole life is fixed around my husband's issues.
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caregiver to husband using in-center dialysis 4 years
lmunchkin
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"There Is No Place Like Home!"

« Reply #16 on: July 28, 2011, 07:58:31 PM »

Yes, Texasstyle, it is and you do a really good job too.  He is blessed to have you, my dear!  As far as Venting, oh, I would NEVER do that!!!! lol
It's what makes this site "special".

lmunchkin    :flower;
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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
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
jbeany
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« Reply #17 on: July 28, 2011, 10:02:12 PM »

Of course we don't vent.  We "explore our emotions in a safe and supportive environment."   That's why we all immediately know what "@#$%#@^&$" means when it is translated from thread speak.... ;D

Hope you both get some relief soon, BB.
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rsudock
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will of the healthy makes up the fate of the sick.

« Reply #18 on: July 28, 2011, 10:10:26 PM »

This sucks!! Sorry for you and your hubby....I hope the neph offers more resolutions to this!!! Hang in there!!

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?
billybags
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« Reply #19 on: July 30, 2011, 05:53:17 AM »

Neph sent our nurse , who is lovely, to check husband out. He has lost an awful lot of weight these last months but his appetite is returning and he is eating a lot better, but apparently where he thought he was putting body weight on and we are only talking a few ounces, it is fluid. So she  is tweaking the regime to get this fluid that is fuc**g hiding every where off..
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Poppylicious
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« Reply #20 on: July 30, 2011, 11:57:28 AM »

Not the best news, but not the worst either, eh?  At least now he may start feeling a tad better.  Thank goodness for lovely nurses!

 ;D

*huggles*
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
lmunchkin
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"There Is No Place Like Home!"

« Reply #21 on: July 30, 2011, 08:02:03 PM »

Oh, BB, just keep hanging on Lady.  He needs you so much!  I know it never seems to end! Just when things settle down a bit for you, another monster rears its ugly head! Im sending prayers and hugs to you!  Hopefully things will get straightened out, before you Collapse!  Keep your head up girl, no matter what happens, you be Strong!

God Bless you,

lmunchkin       :flower; :kickstart;
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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
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
billybags
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« Reply #22 on: July 31, 2011, 02:50:45 AM »

Thanks gang for all your reply's, to-day I feel much better. With tweaking he has drawn off lots of fluid, and here is me, silly sod thinking he was gaining a bit of weight. How the hell do you tell which is which.
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billybags
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« Reply #23 on: August 09, 2011, 05:47:08 AM »

Off we go again. Two appointments at two hospitals yesterday. At least they are  only 30mins apart. Vascular man says "electrodes are not working properly" or brains not ticking as it should. He is making an appointment for a lumber fluid test. We only went to him because we were referred by the osteopath, hubby only wanted a new knee and now we have all this shit to put up with. Off to the next hospital for a chest x-ray and blood test , we have another surgical  thing on Thursday, I keep making hubby laugh because its the stick up the dick thing. I bet this test makes your eyes water guys. We had a letter this morning from our neph, he wants a kidney CT next week. The only time I go out is to hospitals and you know girls I get dressed in my best because its the only time I get out. I put my best cloths on, perfume, beads. Sad isn't it. Still it keeps us going.
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Poppylicious
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« Reply #24 on: August 09, 2011, 08:54:46 AM »

I keep making hubby laugh because its the stick up the dick thing. I bet this test makes your eyes water guys.
This made MY eyes water and I'm a GIRL! 

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
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