I Hate Dialysis Message Board
Off-Topic => Other Severe Medical Conditions => Topic started by: Marley on August 07, 2008, 06:05:47 AM
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It's been a while since I've posted and right now, I'm a little freaked out---ok, a LOT freaked out!! Hubby on hemo dialysis almost 3 years now. Last week he was fluid overloaded and a trip to the ER was in order. The chest x ray showed his lungs were full of fluid and his cardiac labs were horrible!! BNP was 2468 and normal range is 0-100. YES, I'm freaking out!!! They admitted him but only kept him until Saturday. He came home and the next day was worse. Took him to ER again very early Tuesday morning. This time they diagnosed him with double pnemonia and did a blood culture. Later that day, hubby had a fever, he was thrashing around in his bed and was not coherent. He kept pulling off his oxogyn mask and heart monitors. It was horrible!!! Later that night, his doc came in and told us his culture came back posative--he's got MRSA staph in his blood, aka; "septic". No wonder he was so out of it!! I saw his neph yesterday who told me he wants to do an echo on Mike's heart today and I think he changed his mind after I told him Mike had already had a heart infection years ago before they found his cancer (metastatic melanoma) because when I called his nurse to check on him, she told me they did the echo and it was posative for endocarditis!! So now, he's got double pnemonia, he's septic AND he has a heart infection. They are doing another test in which they will scope his heart and go through his esophagus to get there.
He is on vancomyacin and I know that's a strong antibiotic. Could this be it?? I can't tell you guys how many times he has come close to leaving me and it has gotten to the point where I don't believe the docs anymore, but right now he is so sick and just one of these issues could kill him. He is such a huge part of my life there is no way me see without him in it.
Better get my butt going. For those who pray, please keep my Mikey in mind today. He's survived cancer twice when they told him only a 1% of patients with melanoma survive it when it's found so late and with no primary mole, or mark. He's survived a heart infection prior to the cancer. ESRD, staph in the beginning in his abdomen from a failed PD cath. The list goes on.
He is my love and my life, there is nothing I wouldn't do for this man of mine and he doesn't deserve what is happening to him!!
Marley
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I will be saying MAJOR prayers for you guys. :grouphug;
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I already said a prayer for you, and will continue. May God give you strength and may your husband be healed. My sister gave me some notecards with verses on them. I carry them in my purse and consult them when I need moments of strength. This is one of my most worn cards:
"Cast your cards on the LORD and he will sustain you; he will never let the righteous fall." Psalm 55:22
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Sorry to hear about the troubles in your household. I'm sending you lots of hugs and warm fuzzies to help. Keep us posted on how everyone is doing.
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Thank you for letting us know what is going on. Of course you are scared. You are both dealing with so much and it is all scary! I will say lots of prayers for healing, solutions and strength during this time. :grouphug;
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Marley, I'm so sorry about all this with Mike. You have all my prayers, hugs, crossed fingers and comfort that I can send. My mother died at 46 of melanoma (mole) so I know how miraculous it is that Mike is still with you. I'm praying that the miracles continue. :grouphug;
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I pray for you and that you put your faith in God who is always with you. At some point don't you want Mike to be at peace?
:cuddle;
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Marley, I will pray for you and Mikey, he sounds like a fighter and he will get better for you if he can. I hope this is not the end, but believe me if it is you will survive. I lost my husband (my one and only love) 4 years ago, I couldn't imagine wanting to live without him but I do and if needs be so will you. These days I find I can even laugh again, you think you won't but you do. However I am praying very hard that Mikey will soon be well again. Bless you both at this awful time. :cuddle;
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Marley,
You and Mike are in my prayers! :grouphug;
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Dear Marley,
Sending you prayers and hoping that Mikey can fight these challenges. We are here for you. Please keep in touch. :cuddle;
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Marley, you and Mike are in my prayers. May God give you the comfort that only He can give.
Adam
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Marley, I have been where you are. You and Mike are in my thoughts and prayers. :grouphug;
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prayers are going your way :flower;
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Sending more prayers.
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Sending more prayers.
me too.
hang in there, we'll all be here for you.
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I am keeping you both in my thoughts and prayers.
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WOW, 15 replies-you guys are awesome, thanks for the support.
I saw my man today and he is doing better, doing a lot of sleeping though. They did that esophogeal echo today but we won't know anything about that until tomorrow when the doc comes in. Another good sign is that he is hungry :) He hasn't eaten a thing since Monday, so I know he's pretty empty.
Rerun---of course I want Mike to be at peace, but you hit the key word; "someday". He has gone through some pretty rough times and I have never seen anyone come close to the end and then come back again as many times as he has. he still wants to live!! I know there will come a time when I will have to let him go, but it is not up to me--or him. We have 10 grandkids and he is almost finished making a "treasure chest" for one of our grandsons, it's his second one and when he is done with this one, he has one more to make before Christmas. He loves working with wood and is a master carpenter, he loves to see our oldest grandson with his box (which has his coin collection inside). This is a man who has a whole lot of love inside him and he isn't done spreading it around.
He has talked to me about not wanting to go on with dialysis and I told him that if the time came and he wanted to make that choice, I would back him up and let him go. He hasn't talked about that in a few months now, he is too buisy making boxes, lol. but he knows how much I truly love him and that I would respect his wishes.
Even though there is a whole lot going on with him right now and it's all very serious, he looked so good today that I can't help but think he will knock this infection out like he did the last time. He really is a fighter!!
Thanks everyone for all your warm fuzzies, they're coming through loud and clear. :)
Marley
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Sending you an extra warm fuzzy :) :flower; :flower; :flower;
I am a caregiver too, its agonizing to watch a loved one face so many battles-may his will to live stay strong! You sound like a very loving person, I'll be sending you some positive thoughts today!! :flower; :flower; :flower;
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:cuddle; You're in my prayers tonight!
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That sounds more positive, I hope the improvement continues. wishing you both the very best :cuddle;
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Prayers going up for you and Mike, Marley. God is with you and he makes no mistakes.
Keep in touch, we are all concerned about him.
Love, Mimi
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Marley - thanks for keeping us updated. You both continue to be in my prayers.
Woodworking is a fantastic hobby for him. My dad began that as a hobby during the last couple years of his life. He died at an early age of 52. The neat thing is that he created these treasures for us, that we will always have. I am the proud owner of his greatest masterpiece - he made a cradle for my son. I treasure this cradle more than you could know. My dad passed away when my son was 3 months old, at least he was able to be the first one to place my son in the beautiful cradle that he crafted. I have loaned it to my brother and sister when they had children, but it always comes back to me - that cradle belongs to my son, crafted by his grandfather, whom he never knew, but loved him very, very much.
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Marley, glad things are looing better for Mike. :cuddle;
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I saw my man today and he is doing better, doing a lot of sleeping though. They did that esophogeal echo today but we won't know anything about that until tomorrow when the doc comes in. Another good sign is that he is hungry :) He hasn't eaten a thing since Monday, so I know he's pretty empty.
He has talked to me about not wanting to go on with dialysis and I told him that if the time came and he wanted to make that choice, I would back him up and let him go. He hasn't talked about that in a few months now, he is too buisy making boxes, lol. but he knows how much I truly love him and that I would respect his wishes.
Even though there is a whole lot going on with him right now and it's all very serious, he looked so good today that I can't help but think he will knock this infection out like he did the last time. He really is a fighter!!
Marley
That's super news Marley, hunger is a good sign. I too am a caregiver and facing the possibility of loss is the toughest part. We've been there (sepsis also) and have come back from the edge. Rolando and I will be praying for you two. You both be strong and keep fighting. We're with you! :grouphug;
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:grouphug;
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If he's a fighter, he will make it. Just help him be strong. Life ain't always fair but it's still good.
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Add me to the list of praying for Mike's recovering.
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Hang in there. Lots of prayers for you and him are headed your way!
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Marley,
I am so sorry to hear about Mike. I am glad to hear it sounds like he is getting better. I'll keep fingers and toes crossed for his recovery. :bestwishes;
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I am praying for you and Mike and asking God's loving arms and angels around you both. I have been where you are and it is not easy, all you can do it take a day at a time. You need to take care of yourself so you can remain strong for Mike.
Ann
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:cuddle; Thinking of you both :cuddle;
EDITED: Fixed smiley error - okarol/admin
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holding you and your husband in my thoughts :cuddle;
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:flower;
My husband is coming home tomorrow after he gets his dialysis and I can hardly wait to get him here!! He will be on vancomyacin to treat the heart infection for a few weeks until it's gone. He is still feeling pretty weak and is sleeping a lot (yea!). He hasn't slept good since he started dialysis and I don't know how he can function on such little sleep. Once or twice a month, I'll pull an all-nighter with him and I pay for it big time.
Thank you everyone for all the support you've given me and for your prayers.
Marley :guitar:
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I'm so glad to hear he's improving and coming home. Just a word to the wise - my husband was on vancomycin in April in the hospital and about 6 weeks later he came down with c.diff as a result. It is to be avoided at all costs, trust me! We were not told about the risk of that happening. Since then I've learned that probiotics might have helped prevent it. Please ask and/or do your own research. It has taken a terrible toll on his health.
Good luck!
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I'm so glad to hear he's improving and coming home. Just a word to the wise - my husband was on vancomycin in April in the hospital and about 6 weeks later he came down with c.diff as a result. It is to be avoided at all costs, trust me! We were not told about the risk of that happening. Since then I've learned that probiotics might have helped prevent it. Please ask and/or do your own research. It has taken a terrible toll on his health.
Good luck!
We second this! Since the first go 'round, we have used probiotics (lactobacillus is what I believe it is), specifically "Lactinex" which is over the counter but kept in the refigerator so you have to ask for it. It comes as chewables or powder. The chewables are tasty.
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:bestwishes;
Comfort and Strength is what I pray for you and Mike
God Bless
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So glad Mike is coming home :flower;
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Happy homecoming. :bestwishes;
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I sending up prayers that he continues to do well and rejoicing with you on his homecoming! :yahoo; :clap;
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Nobody told us about the risk of getting C-diff from the vanco---I'll be calling his doc tomorrow. THANKS PD WIFE!! Since that is over the counter, can his doc still write a scrip for it?? I can't believe nobody told us about the probiotics, I'm getting madder the more I think about it!!! He could all the help he can get right now and they don't tell me???? Probiotics are an immune system booster, right?? So it helps a body to heal? I'm gonna do a little reading about that.
Don't know if I mentioned it but he also has an eye infection we were told came from the the endocarditis. He saw the opthamologist today and his vision is improving, it was wonderful hearing that!! Since he is light sensitive in that eye, we're keeping a patch on it.
He is still pretty weak and tired from being so sick and since he's come home from the hospital, he is needing my help getting up off the couch and he hold onto my forearm for support. I'm using muscles I didn't know I had and they are not very happy, lol. I'm hoping he gets his strength back soon cuz I'm not in the best of shape eiether and am going to need my Rituxan infusion soon......l
He goes back to the dialysis clinic tomorrow and life can get back to normal, well; normal for us anyway.
Marley
:guitar:
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I get angry all over again just thinking about how very very ill my husband was with c.diff and it was probably preventable. Like you, nobody even mentioned the possibility of it happening. My understanding is that broad spectrum antibiotics like vancomycin given in large doses like you get in the hospital not only kills "bad" bacteria but also the "good" flora you need in your gut. Probiotics are supposed to replace the good flora to help fight off c.diff.
Good luck to you both.
Kate
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OK, I guess I am stupid but could someone please tell me what c. diff is? I was given vanco this past February and did not know anything about c. diff????!!!! Thanks!
Tammy
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so glad your situation is better- I can hear how much you love him :flower; :cuddle;
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Hey TynyWonder...hope this helps a little. C diff is a severe infection of the colon, often happening after normal gut flora is eradicated by use of antibiotics. The C. difficile bacteria naturally resides in the body, but becomes overgrown
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eeeeewww that sounds horrible! Thanks for the explanation!
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Tiny Wonder---I'm cracking up girl----"eewwwww" :rofl; You got that right girl!!!
My 'ol guy had another esophogeal (sp?) echo AND an angioplasty this morning and it showed the infection is a tiny bit smaler!!! The heart surgeon won't be there until Monday, but the heart DOC told us that he will most likely do the surgery on Tuesday. He told us it's a 4-5 hour surgery and if they find hubby needs anything bypassed, they will fix it then. The heart-lung machine scares me and I know they will have to stop his heart. Has anyone ever had this type of surgery done before????? Mike told me they said there is a video he can watch but he turned that down right away, he would much rather not know what they are going to do. Not me---I'll watch it tomorrow---maybe.
He is a lot calmer about the surgery now and is feeling a little stronger and less tired. well, maybe still pretty tired, but he did get up and walk down the hall today.
See you guys??? Didn't I tell you what a fighter my man is?? I still get that panic feeling in my gut but it's a little quieter the last couple of days. Who said there are no more miracles in the world, I'm living with one of them!!!
Marley
:guitar:
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:grouphug;
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Mike sure is a fighter and Marley you are also. Isn't love grand? :) All the best to you and Mike on Tuesday I will be praying that things go well.
:grouphug;
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Marley,
During the fall of 2007 my dad, who was 72 at the time, started sliding downhill. He had no energy all fall and by Christmas he could barely walk. His face looked purple. It turned out that he had some sort of infection in his heart valve. (although I think they decided that it wasn't C. diff). Somehow he had passed a stress test during the summer and as a result, no one was looking for heart disease. Another problem in my mind is that he goes back and forth between NY and Florida a lot and has two different sets of doctors. As a result of this, I sometimes wonder if any of them feel "ownership" of him as a patient. In any case, the infection wasn't discovered until after he had a minor stroke in February of 2008, which likely was due to a piece of the infection breaking loose. Luckily for him it was a very minor stroke which does not seem to have had any lasting effects. During the surgery they replaced a heart valve and he also needed a double bypass.
But here's the good news - he felt really, really great after he healed up from the open heart surgery. His color went back to normal and he gradually got stronger and stronger until he was himself again. A number of friends have told me the same - that as scary as open heart surgery is, it made a huge difference for their parents in terms of how they felt and were functioning. And, I have one friend who had to have bypasses when he was still in his 30s, due to genetic predisposition to clogged arteries. He is now in his mid-50s and also doing really well.
I hope it all goes well. If they start thinking about delaying the surgery for some reason, please ask them if there is a risk of stroke.
:grouphug; :grouphug;
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My dad had open heart surgery a year and half ago. They did his without stopping his heart. (There is two ways to do this surgery) He came through the surgery and made a quick recovery. Good luck!!!!!!!!
http://www.uchospitals.edu/specialties/heart/services/surgery/beating-heart.html
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Pelagia
The story you shared about your dad is very encouraging!! We haven't been able to be intimate for the last 5 years now and we're thinking once he'srecovered from surgery, we might be able to again....... That's the least of my worries rightnow, but it sure would be nice!! I sure miss the intimacy and so does Mike. I'm hoping!!!
Danally, thank you for the article. I don't think they do heart pumping surgery here where we're at and we don't have the resources to get to Chicago, but thank you for the article, it was very interesting!! Mike trusts his cardiologist and we've been told this cardiac surgeon is very good at what he does and has done many mitral valve repairs, lots of experience.
Part of this infection has broken off and apeared on Mike's toenail as a dark line. Very strange!! I learn new things every time I go down there or get on line and search. The hospital here he is at has a website where I can check his lab work and read some reports. I've gotten quite an education ESRD and heart problems, big time!!
:guitar:
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I had a scare one year when they thought I had an infection on my heart valve. Holy smokes the test for it is miserable. They drop a camera down your throat to look at the heart valve. I was awake for the entire thing. Yes, they drugged me but not enough. When they were done I sat up and told them that the test sucked all the way. THey looked at me and said: "You felt that?" Oh yes I did. I managed to get myself into a hypnotic trance and hold it until they were done with the test.
I truly hope your hubby gets better soon!
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:grouphug; Hope things go well Marley. Keep us posted. :guitar:
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Marley,
My dad had that type of surgery and St Francis in Manhassett, New York. Good luck I am sure he will be fine.