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Author Topic: Back in the hospital  (Read 11623 times)
Marley
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« on: August 21, 2008, 10:12:25 PM »

I had to call 911 last night because my sweet hubby was short of breath, sick to his stomach and pouring sweat, I have never seen a person sweat so much!!  When the paramedics got here they put him on oxygen right away and within a minute Mike felt better.  He even told me he wants to stay home, but the tech talked him into trying it without the O2.  He didn't make a full minute, shook his head and told the tech he will go to the hospital.  The chest x-ray showed his lungs were full of fluid again and when he got upstairs, they did his dialysis.  Not half an hour after he was done, a tech came into his room and did another echo.  I was there the whole day but his doctor never came back.  I'll be there in the morning so we can talk about the findings.  Poor Mikey, he slept most of the day.  They set him up with a bi-pap to help with his breathing and it seemed to help more than the nasal O2.  He is also talking "not" like himself.  For the last 2-3 months, he will fall asleep while he is sitting up and that's when he starts talking nonsence.  I haven't been able to get a straight answer as to why he is doing this.  When he was in hospital last week, his doc told me it "could be" the pnemonia OR the staph in his blood, but that doesn't explain why he's been doing this.  The closest I can come to describe these episodes is that he is dreaming and talking about it.

Last week surgery was suggested to get rid of the "vegetation" on his heart valve (endocarditis) but his CHF is active right now, so it was decided to stick with the antibiotics.  I don't know the echo results yet, but I think the meds aren't working so good???   Why else would he have this relapse so soon??  Oh man, he looks so pitiful curled up in his hospital bed feeling so cold.  All I want to do is climb into his bed with him and go to sleep.

Could this just be too much for that tough 'ol body of his to handle??  Could I loose my life partner??  I'm not ready yet!! 

I didn't sleep last night and am starting to feel pretty funky.  I'll be back to the hospital first thing in the morning, so I'm off to bed.

Marley
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Marley
rose1999
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« Reply #1 on: August 21, 2008, 10:47:11 PM »

I have no answers but I just wanted to sent you a big hug  :grouphug;.  I hope the docs will have answers for you today and that they can make Mikey well again. Thinking of you both.
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thegrammalady
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« Reply #2 on: August 21, 2008, 10:54:17 PM »

 :grouphug; all i can do is offer hugs  :grouphug;
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monrein
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« Reply #3 on: August 22, 2008, 06:01:40 AM »

I'm so sorry that you're having to deal with all this right now.  Sending you both hugs and wishes for Mike to be better.   :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
kitkatz
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« Reply #4 on: August 22, 2008, 06:23:18 AM »

All I can do is tell you to hang in there.  I hope he gets better soon.   :grouphug;
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Take it one day, one hour, one minute, one second at a time.

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paris
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« Reply #5 on: August 22, 2008, 12:09:45 PM »

We are all here for you :grouphug;   I'll say more prayers for Mikey.   I am sorry and hope tomorrow is better. :cuddle;
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pelagia
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« Reply #6 on: August 22, 2008, 12:42:19 PM »

Geez, that is so much to deal with.  I hope Mikey's condition starts to improve soon.   :grouphug;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
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« Reply #7 on: August 22, 2008, 04:03:35 PM »

Spend as much time together as you can and be sure the Doctors and nurses are listening to you. You are his best advocate. Hope things get better soon. Hang in there and take care of you.  :grouphug;
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lola
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« Reply #8 on: August 22, 2008, 06:18:52 PM »

 :grouphug; :grouphug;
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G-Ma
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« Reply #9 on: August 22, 2008, 06:21:56 PM »

Hold him, hug him, be there for him as you are.  I have been there.  You are in my prayers.
Ann
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
Marley
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« Reply #10 on: August 23, 2008, 05:01:56 PM »

 :flower; :yahoo; :flower;

I have great news--can you guess who's spring loose from the hospital??  WOOHOO!!!  I feel like 50 lbs have been on my shoulders for days now and he sounded so good when he called me to tell me!!  Once he's done with dialysis he'll be ready, his nurses already have the paperwork done.  They're checking right now to see if he can tolerate breathing without the oxygen, otherwise he'll come with a can.  I can hardly wait to put my arms around him!!!  I haven't seen him all day today, I've been battling with my stomach since last night and it finally got better a couple hours ago.  I don't think it's anything I have to worry about passing to anyone though, with all this stress I should have upped my prednisone for the adrenal thing I have.

Thanks you guys for all your support!!!

Marley  :guitar:

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Marley
Marley
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« Reply #11 on: August 23, 2008, 05:03:31 PM »

Forgot to add his doc came in with the results from the echo and it showed that Mike still has the endocarditis but the "vegetation" has gotten smaller.................

 :guitar:
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Marley
lola
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I can fly!!!

« Reply #12 on: August 23, 2008, 05:03:55 PM »

Marley
 :bandance; :bandance; :flower;
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paris
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« Reply #13 on: August 23, 2008, 07:28:17 PM »

Great news!!  Give him a big IHD hug for us :grouphug;
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« Reply #14 on: August 23, 2008, 09:25:42 PM »

 :cuddle; That's so great that he can come home! Best wishes!
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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
monrein
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Might as well smile

« Reply #15 on: August 24, 2008, 04:09:46 AM »

Good news.  Glad he's coming home.
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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
willieandwinnie
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« Reply #16 on: August 24, 2008, 05:56:19 AM »

Marley  :flower;. Hope things calm down and you can catch up on your rest.  :cuddle;
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Marley
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« Reply #17 on: August 25, 2008, 04:42:01 AM »

I'm kind of loosing track of my days now.  Saturday my sweet hubby came home in the evening, I made us a nice diinner and had a movie he's been wanting to see in the DVD player.  I went to bed around 11:30 and left him with a bell to ring if he needs me.  Well, he woke me up around 3:30 and said he couldn't breathe.......called 911 again----the headlights don't work on our car.  He was still having problems getting enough air even with the oxygen mask so they put him on a ventilator, breathing tube.  I didn't see him until the afternoon, I just couldn't bring myself to see him with that damn tube.  I thought I was pretty tough from all these years and too many scares to count, maybe I have a fobia.
They put in a central line since both arms are not any good for IV's, both have fistulas in them.  The doctor called me to get permission to place the pic line and he also told me they think his valve is sicker than they origionally thought, and nobody can give me an answer WHY he filled up with fluid not 12 hours after his last dialysis treatment!!!  I  know he didn't drink too many fluids  I'm thinking it's his CHF flaring up--is that the right word?  That's the word I use when my RA is acting up.  Anyway, he is depending on this breathing machine to do the breathing for him.  Every time his nurse turns it down he gets adgitated and tries to take out the tube.  They are keeping him sedated so he doesn't do that.

The hospital he is in right now has a web site so I can access his lab work and read reports.  I won't go into all that's wrong with his heart, just put it down to it's pretty sick. He is maxed out on his heart and high blood pressure meds, so I'm told and now I'm wondering if they will want to do surgery on his heart.  With it being so sick that's the last thing we want. 
All this and he hasn't filled out his advanced directive!!  My fear is that he can't get off the breathing tube, what the hell do I do if that happens???
This man has gone to the edge so many times in these last 18 years that part of me expects that he will again, but this breathing tube REALLY scares the krap out of me!!!  His nurse told me they have tried turning down the oxygen level to make him breathe more on his own with just a "little help" from the machine, but he doesn't do well so they end up turning it back up again.

I plan on parking myself down there as soon as I can get someone over here to check the fluids in my car.  To top things off, my brakes aren't working right.  The pedal goes down to the floor and I can barely stop the car---I'm thinking I need brake fluid??

DAMN DAMN DAMN, what the hell am I supposed to do if he really leaves me this time/??  He has treated me like I'm a queen since we got married almost 20 years ago and he still does.  The last year he has slowed down a lot and I've been let with the yard work.  Not an easy feat with my RA.  That's another krappy thing, I was on a drug study for Rituxan and Arava and got kicked out because on my apt. day, Mike was getting his fistula put in and because his surgery was put off a few hours, I missed my apt.  It was my second one too, so I'm out of the study.  Now I have to wait until pay day to pay a damn 96.00 bill so my damn rheumatologist will see me---THEN I can get the Rituxan going again.  The meds are so expensive that I'm in a patient program to pay for it, that takes time and I've been needing my infusions like two weeks ago.  I've already been feeling that "sick, achy all over" feeling on top of the every day aches and pains.  I was SO pissed at my rheumy's office for making me wait!!!  It's almost the end of the month and living on SSDI getting our checks once a month---leaves nothing left at the end of each month, and this month was harsh.
At least Mike's got medicare AND medicaid now and it goes back to the first of July---that's a blessing I'll take!!

I'm feeling so alone right now.  It's just me and our dog Dazey and parrot here, our son moved out last week.  I'm 48 years old and if I didn't have my dog with me, I know I'd be scared being alone here at night, what a baby!!!  I have lots of family and friends here in town but yesterday, I just wnated to be alone. 

could this be IT?????????????????????   :'(
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Marley
monrein
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« Reply #18 on: August 25, 2008, 04:47:25 AM »

Oh Marley, I don't know what to say but I'm sending you a hug and I'm praying for Mike.  :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
Deanne
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« Reply #19 on: August 25, 2008, 08:10:19 AM »

I've been sitting here staring at a blank screen trying to think of some words of comfort. The best I can come up with is to tell you we all care about you and are sorry for everything you're trying to deal with. I wish I could do better. I wish I could make some of the fear and pain go away.  :grouphug;
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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
paris
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« Reply #20 on: August 25, 2008, 09:31:06 AM »

There aren't enough words to begin to help you with the fear and worry.  Wish I was next door, wish I could fix the car, wish I could make you hurt less and most of all wish Mike was doing better.   I am so sorry for all that is going on.  We are here for you :grouphug;  I'll be saying lots of prayers for both of you.
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
pelagia
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« Reply #21 on: August 25, 2008, 09:37:28 AM »

I am so sorry for the worry that you are having to endure and all that you husband has had to deal with.  :grouphug;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
lola
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I can fly!!!

« Reply #22 on: August 25, 2008, 04:42:06 PM »

Marley hang in there :grouphug; :grouphug;
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Joe Paul
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« Reply #23 on: August 25, 2008, 04:51:41 PM »

Good luck, I hope things smooth out soon, for the two of you  :thumbup;
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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
okarol
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« Reply #24 on: August 25, 2008, 04:53:40 PM »

Please know we are all hoping things improve and there's plenty of love and support coming your way.
You brakes may have a fluid leak. Is there someone who could check them for you?
I hope you get some answers soon. The unknown can be so frightening.
Please come back and let us know how it's going, when you can.
 :cuddle;  :cuddle;  :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.
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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