I Hate Dialysis Message Board
Off-Topic => Other Severe Medical Conditions => Topic started by: Marley on August 21, 2008, 10:12:25 PM
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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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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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:grouphug; all i can do is offer hugs :grouphug;
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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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All I can do is tell you to hang in there. I hope he gets better soon. :grouphug;
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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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Geez, that is so much to deal with. I hope Mikey's condition starts to improve soon. :grouphug;
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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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:grouphug; :grouphug;
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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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: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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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
:bandance; :bandance; :flower;
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Great news!! Give him a big IHD hug for us :grouphug;
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:cuddle; That's so great that he can come home! Best wishes!
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Good news. Glad he's coming home.
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Marley :flower;. Hope things calm down and you can catch up on your rest. :cuddle;
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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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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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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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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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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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Marley hang in there :grouphug; :grouphug;
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Good luck, I hope things smooth out soon, for the two of you :thumbup;
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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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Marley,
:grouphug;
We are with you.
Alene and Rolando
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i am so sorry. I know it's scary. :cuddle;
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:grouphug; more hugs, i really don't know what else to do or say. scary thought me at a loss for words. hopefully when we hear from you again you will have good news. we are all praying for you.
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Who was the guy that said things come in 3's?? How many times? :) My dad volunteered to come check the fluids in my car yesterday morning and I was out of brake fluid, or there was very little in the bottom of the holder, OMG. After he filled it up, I went for a test drive around the block and my brakes are exactly the same, so it's parked again. If I was completely out of fluid, wouldn't I need to bleed my brakes now---wouldn't there be air in the brake lines?? Anyone mechanically inclined? It makes sense to me so tomorrow I'll ask my brother to come by.
I talked to his heart doc yesterday and he said that Mikey's endocarditis is NOT any better---NOT getting smaller like I was told. It's a 2 cm vegetation on his mitral valve and he's got so much calcification on the valve that he "isn't a good candidate for surgery". He said that even if they replaced the valve, he's got too much calcification and it wouldn't work. This surgery would save his life and I'm so confused right now!! He told me he would talk to a cardiac surgeon and have him go over the test results and give his opinion. Also, M's nephrologist came back from vacation today, it was his first time seeing him since Thursday last week. I told him what the cardiologist told me yesterday and the first thing he said was----he doesn't know Mike---my thoughts exactly!! He said that we all need to sit down and discuss the options. They all agree that he needs this surgery to stay alive but they differ as to if he should. This is very typical, it's rare when I see two doctors agree and it's always something important.
The nurses have been testing M's ability to breathe with less help from the machine and every time, he gets agitated and start gaging. He was pretty restless and has tried pulling the tube out of his mouth so they put restraints on his wrists. His stats didn't go down much during the test and so they pulled out the tube. (right in front of me) Within minutes, he settled down and slept. One thing that is bothering me and Dr H (neph) is that his sedation was turned off and he still didn't come out of it. He's got a blank stare and isn't responding to the doctor, he will look at him but I don't think he is seeing him. Dr H ordered a CT of his brain and I should know the results of that tomorrow.
I am feeling a little more optimistic today since I talked to Dr H, he and I both have witnessed Mikey getting to the edge of that cliff and come back, more than once so I know he will fight for Mike to get THE best care and treatment.
As for me, I am one tired out, worn out, brain fogged sore and achy woman---the 'sore and achy' part isn't that bad though, must be all the good and sincere wishes I got from you'all----THANK YOU!! It's nice to come to a place where people understand what I'm going through right now.
Marley :guitar:
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Yes the brakes do need bleeding, but you also need someeon to check if there is corrosion/holes in the brake pipes as there must be a reason why it was so low. Do you have the vehicle regularly serviced? If so then checking levels is part of that so again there must be a reason such as a leak for it to drop so low. You are right not to drive it until someone has checked.
It's good to hear Dr H is back, he obviously knows Mike well and will know what is best for him. You've had such a rollercoaster, I think about you a lot and send all good wishes your way :grouphug;
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just stopping in to read where things are today and give you a :cuddle;
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I'm glad you're feeling more optimistic. :grouphug;
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I am praying for you now.
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The CT scan came back ok!!!! WOOHOO!!! I called Dr H since I missed him on rounds this morning and he told me about the Ct scan. He also said that I would have an answer by the end of this week as to whether they will do the surgery he needs or not do it. I don't see why they would deny him what he needs to save his life!! Dr H was right, Mike's cardiologist doesn't know Mike well enough and thank God for Dr H!!! I know he is in our corner.
He will have dialysis this afternoon and after that, they are taking him out of ICU and putting him back on the Telemetry floor. We know the nurses well and they know Michael too and I've found that when that happens, they seem to take more care with him. He's such a sweetheart of a man when he is awake and they all know that. When I was with him yesterday our daughter and son in law came in to see him. While I was standing by his bed, I leaned down and told him how much I love him and to mostly just get close to him, feel his skin and breathe in his scent. He leaned over and put both arms around me!!! He still can't talk to me but just that gesture alone sustained me for a long time!! He held me as long as he could until his arm dropped back down to the bed, so now I know he knows I am there.
Marley
:guitar:
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Oh Marley, I'll be thinking about you both all day today and in the days ahead.
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:grouphug; :cuddle; Marley. You'll continue to be in my thoughts and prayers. :cuddle; :grouphug;
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:grouphug;
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Marley, you and Mike have been in my prayers :grouphug;
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So happy for you and him that he hugged you. How beautiful!
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One hug can make the whole world better. I keep praying for both of you. Great news about the CT scan. That was scary. He is one very strong man! Now we will pray for the surgery. It is good that the neph is totally on your side. I hope you can get some rest. Sending love to you both :grouphug;
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Thinking about you guys. HUGS! :cuddle;
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Marley, you and Mike are in my prayers.
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Sending extra good thoughts your way. :grouphug;
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THANK YOU THANK YOU THANK YOU for all the love, support and prayers you sent our way!!!
See "very scared"
:guitar:
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A late get well soon, Mike.