I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: petey on January 28, 2008, 05:16:17 PM
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Hey, all! I haven't been around for a few days because my husband (Marvin) is in the hospital. Back in December, he had an infection in an old graft site (hadn't used it in two years). The infection was MRSA and before they could get the graft out, the infection spread to his heart and damaged a valve. He had to have a pacemaker put in in December. The pacer hasn't worked right, and he had to have it "re-set" three times. Last Thursday, it quit all together. I was at work, and Marvin called me -- terrified. My neighbor got to our house in two minutes. Rescue squad next. To our local hospital -- then on to Duke (Durham, NC).
The pacer isn't working because the leads (epi-cardial -- screwed into the side of the heart) aren't making a good connection with Marvin's heart. The doctors tell us they usually put this type of pacemaker (device implanted in abdomen, leads run to the outside of the heart instead of down into the heart) in dialysis patients. The risk of infection with leads (wires) run into the heart is so much greater with hemodialysis patients because we're accessing the vascular system and, hence, the bloodstream with every dialysis treatment. Anyway, Marvin's heart has scar tissue (explained to us as a "fiber-like thickness"). The docs said this was typical in long-term dialysis patients -- and other organs are affected the same way. With the scar tissue around his heart, the leads to the pacemaker aren't firing like they should.
The surgeons tried to go into the pacer and revise it on Friday. No luck. Now, he will have surgery on Wednesday to implant a whole new pacemaker. This one will be in the abdomen again but one of Marvin's doctors has researched the whole thing over the week-end and they will now use different leads (wires that run from the pacer to the heart). The "new" leads will be coated in steroids, thus lessening the chance that the scar tissue will interrupt their conductivity. They're going into the middle of his chest to be closer to the heart (so they can look for a "good" spot on the heart to attach the leads). If this doesn't work, he'll have to have a "traditional" pacemaker (one in the chest with leads run down into the heart), but that's our last resort.
Marvin's spirits are good -- as usual. He says this is just another bump in the road. Please say a prayer for him.
I haven't had a chance to get caught up on the boards. How's Goofynina? How about willieandwinnie's Len? Even though things have been super crazy for us over the past five days, I've been unable to get my mind off Goofynina and w&w and Len.
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:grouphug; Hope everything works out ok!!! I'll be thinking of you. :cuddle;
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:grouphug;
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thinking of you both :grouphug;
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Hang in there!! Hope things get better soon. :cuddle;
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:grouphug;
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Prayers and love are sent your way. Marvin, you have been a lot through, we are with you on this one :cuddle; :cuddle; :grouphug; :grouphug;
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Wow Petey, what a couple of days you've had. Don't worry about anyone else, give Marvin a big hug and let us know how he does please! :cuddle;
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Awwwwwwwwww....Petey, I'm so sorry to hear all of this. I do hope this next prcedure will get him
straightened out. My prayers are with you both.
Mimi
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:grouphug;
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:grouphug;
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Sending prayers for your Marvin, Petey!
Will be thinking about you both! :cuddle;
Anne
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Prayers to you both. I hope Marvin gets out of the hospital soon.
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Petey, I am so sorry. Is there anything I can do to help? Is anyone there with you to help you while you are helping Marvin? Take care of yourself during all of this. :cuddle;
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Hang in there :grouphug;
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Pray the surgeons get it right this time and no more problems. Thank goodness for his attitude!!! Very inspiring. I don't know if I would be the same in your shoes. I hate hospitals! But, again - this is almost over and everything will be good again soon...
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Marsha, :cuddle; I am so sorry. I've been thinking about you a lot also. Did you get the email I sent you? I had to call the rescue squad again for Len so I haven't been much up to posting much either. :( I'll say extra prayers for Marvin and please if you need to talk or just a shoulder to cry on, know that I'm here. Please take care of yourself as well as Marvin. Lots of thoughts and hugs.
Kathy
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Thinking of you both and hoping all goes well for you. :cuddle;
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Prayers to you both! :grouphug;
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I'm sorry Marvin and you had to endure such a terrifying incident! I hope the Dr's fix it for good this time! :grouphug;
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I came home early tonight to get a good night's sleep -- surgery for new pacemaker is at 8:45 a.m. (EST) tomorrow. Please say a prayer for my Marvin. Say one for me, too -- I'm exhausted! I'm trying to stay strong -- and sane -- for both of us.
Thanks for the love and support from all -- Where do ESRD people who don't know about IHD go for support? They must wander around lost. What did I do before I found this site? I must have been lost, too. Love you guys! :grouphug;
Kathy -- got your email but haven't had time to sit down and respond. Sounds like you've had your hands full, too. I declare, we MUST have been sisters in a previous life -- our paths are so similar! Maybe we're going to be sisters in the next life. Or maybe we were sent to be cyber sisters right here and now. I keep thinking about Len and wondering how he's doing and how you're managing. Will write soon.
petey (Marsha)
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Petey, we will say lots of prayers tomorrow for Marvin. :grouphug; :grouphug;
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Thank you for sharing this with us. We are with you in this - you are not alone. Be assured of my caring thoughts and prayers. :grouphug;
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Marsha, I woke up praying for Marvin. I hope you got some rest last night, as I know just all the road running is so exhausting. You are strong/sane and everyone here is praying for the both of you. Hug Marvin extra tight this morning and know that my thoughts will be with you. By the way, I'd love to have a sister. :cuddle;
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Sending prayers and good thoughts both your way. :grouphug;
Amanda
xxoo
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petey, How is Marvin??? Waiting on edge of seat for news. Praying all went well. :grouphug;
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Marsha, I'm so sorry. Somehow I missed this thread. How is Marvin doing? How did his surgery go? Please let us know! I have both of you in my prayers. :cuddle;
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They could not implant the new pacer on Thursday. The doctors noticed something suspicious on a CT scan. Marvin had to have emergency exploratory surgery Thursday night. At the place where he had his transplant (and then it was later removed after it quit working), they found a large abcess-type mass about the size of a softball. They are not sure what caused it. They removed it, and it has tested positive for MRSA staph infection. He has a wound vac on that incision. The surgeon told me that if he had waited just a few more hours to go in, the abcess would have ruptured and the MRSA would have spread quickly throughout Marvin's body. They will not implant the new pacemaker until his cultures show no more infection (six - eight weeks minimum); we're hoping he won't have to stay in the hospital that entire time.
It's difficult to stay with the home hemo while he's hospitalized, but the doctors are allowing me to cannulate (Buttonhole access), so that helps. Right now, we're hanging in there.
Please pray for my Marvin.
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I just seen this post but as of right now prayers are coming your way.
I must comment that even in reading your posts you sound very positive, I firmly believe that if you have a positive outlook, that that is half the battle.
Thinking of you and your Marvin
Kim
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:cuddle; Marsha, I am so sorry. I'm praying that they can get this infection under control and get his pacemaker place. God, you have been through hell, I wish there was someway I could help. How are Marvin's spirits? How are you doing? Please know that we are only a keyboard away and we will pray real hard that this gets better, fast. Take care.
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I'm sending a prayer your way.
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Prayers for Marvins strength and for yours :thumbup;
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Good luck. It will all work out. I don't know you but everybody on here seems like good people. I'm in right now for an infection myself. So I am pulling for him. Take Care! NEVER WEAKEN!!!!
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They could not implant the new pacer on Thursday. The doctors noticed something suspicious on a CT scan. Marvin had to have emergency exploratory surgery Thursday night. At the place where he had his transplant (and then it was later removed after it quit working), they found a large abcess-type mass about the size of a softball. They are not sure what caused it. They removed it, and it has tested positive for MRSA staph infection. He has a wound vac on that incision. The surgeon told me that if he had waited just a few more hours to go in, the abcess would have ruptured and the MRSA would have spread quickly throughout Marvin's body. They will not implant the new pacemaker until his cultures show no more infection (six - eight weeks minimum); we're hoping he won't have to stay in the hospital that entire time.
It's difficult to stay with the home hemo while he's hospitalized, but the doctors are allowing me to cannulate (Buttonhole access), so that helps. Right now, we're hanging in there.
Please pray for my Marvin.
Thank God you got him in when you did. Maybe now he will get stronger and able to install the new pace maker. It saddens me on all he and you have been going through. Sometimes I am so self centered on my problems and when I come to this site and read what some of you are going through, I feel guilty for being self centered at times. I don't really have it all that bad when you see the whole picture. I pray that you and Marvin see brighter days ahead.
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Hi Marsha, you and Marvin are going through so much. I pray for you both to maintain the strength needed to weather this storm. :cuddle;
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Oh honey!!! God was looking out for you two, to have Marvin at the hospital before the abscess broke!
That is wonderful news. As for the wait, I can understand that. I just hope he can come home
for most if not part of it.
I'll defintely be praying and thinking of you and Marvin!!! Hang in there girl, we're with you!!!
:cuddle; :cuddle;
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I'm sorry Marvin an you are going through a tough time
but am glad that they found the abcess before it ruptured.
Praying for a speedy recovery.
I have a pacemaker/defibulator and when my bood clot goes away
they need to tst it to see eif it will fire off. I am certainly not looking
forward to that. How long has Marvin had the pacemaker?
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Thanks for the update. I am so relieved that they were able to find the infection. Please give Marvin my best wishes, and sending you lots of LOVE too.
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Petey, you and Marvin are certainly dealing with so much. I am glad he is in the hospital and the doctors are on top of everything. I'll keep you both in my prayers. :cuddle;
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What a scary experience. I'm cheering for the timely discovery of the abcess -- that was so great. Hope all goes forward smoothly now -- and Marvin gets to come home soon. How are *you* doing? Do you have a lot of support on the ground there?
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Petey, you and Marvin have been through so much. I'm glad they found the abscess before it ruptured and were able to take care of it. Hopefully he will not need to be in the hospital for the entire 6-8 weeks. We're all here for you. Take care of yourself, too...you're no good to Marvin if you don't. :cuddle;
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Sending love and prayers for you and your Marvin, please let all be well.
:grouphug;
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I am sending many good wishes to you and Marvin. I hope things go better quickly.
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Thank you all so much for the words of encouragement and support! You have NO IDEA how that boosts my spirits.
Marvin's spirits are good -- always have been. He hates being in the hospital, but he said he was glad his pacemaker wasn't working right because that took him to the hospital. If he hadn't been in the hospital, this abcess could have ruptured and we wouldn't have known it until it was too late. He says God was looking out for him. It's really true -- sometimes that which we think is bad turns out to be a good thing.
His white blood count isn't coming down as quickly as the doctors would like. He got up to 26, then down to 14. Last night, his WBC was 17. Hopefully, this will be down today.
When the doctors noticed the abcess/mass, they called in his vascular surgeon (the one who has operated on Marvin 25 or so times in the last ten years). This surgeon, Dr. McCann, is the one who insisted that he have the emergency exploratory surgery. At the time, I thought Dr. McCann was over-reacting, but, as it turns out, he saved Marvin's life -- again (he has several times in the past). He is an extremely smart man and an excellent surgeon, but the best thing about him is that he seems to really like Marvin and he cares!!! I believe that Dr. McCann is a gift from God.
In the recovery room, Dr. McCann told me and Marvin that the mass was so large that we should "name" it. That made Marvin's crazy side come out. Marvin asked him if it was a boy or girl, and Dr. McCann said it had to be a boy because it was so ugly. Marvin asked him if we could name it after him!!! The abcess's official name (according to Marvin) is Kadean Lucas (-- Lucas is Dr. McCann's middle name -- he picked "Kadean" because it sounds like kidney and the mass was in the site where his former kidney was)! Friday morning, I carried Marvin a big blue "It's a boy" balloon :rofl; I wrote the "baby's" name on the balloon with a marker, and it's now clipped on the side of his bed. Marvin loves to laugh, and he's gotten lots of laughs out of this. Lots of people (nurses, other doctors, the lunch lady, etc.) ask about the balloon, and Marvin tells them that he had a C-section. He's a nut!! When I get to the hospital today, I hope we have something else to laugh about.
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:rofl; a what a way to handle stuff! I know one thing , the next time I am dealing with "stuff" I am going to try my hardest to handle it like Marvin :)
Kim :cuddle;
EDITED:Fixed smiley tag error- kitkatz,moderator
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Petey,
God bless you and Marvin-for having
a sense of humor, and being able to
laugh at all of this.
I hope today will find your Marvin feeling
OK!
Anne
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Petey, it's absolutely wonderful that the two of you can laugh through this, I know it makes things a lot easier to handle. Keep up the great attitude, you both are an inspiration!
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This only proves that God is always on your side. Inspite of all the difficulties your strong faith carries you on. You are amazing and really one of a kind. God sees that. All my prayers for Marvin's quick recovery and for your strength.
love,
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Marvin had a very good day today. His white blood count is down to 14.6 :yahoo; His spirits are good, and he told me this afternoon before I left the hospital, "God has not brought us this far and through this much to abandon us now ... now, get out of here so I can watch the Super Bowl without having to explain the game of football to you AGAIN."
I am so envious of his attitude, and I am so lucky that he picked me to be his wife.
The doctors (surgeon, nephs, cardiologists, etc.) are meeting in the morning as a group to discuss his case and decide when the new pacemaker can be implanted. Keep your fingers crossed that it will be soon, but also pray that if it's not soon that Marvin and I will have the strength and spirit to last until it can be implanted.
My love for Marvin and the love and support from all of you have seen me through another day.
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Petey, you and Marvin are both inspirations to all of us. I hope you get some rest. I know the doctors will come up with a good plan. :grouphug;
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;D Best wishes to baby Kadean (are we supposed to send a gift...?)
I am glad Marvin is doing so well. Thanks petey, for keeping us updated, and inspired too! :cuddle;
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That is wonderful news!!!! Not only is Marvin doing well, you have a baby boy!!!!!! :rofl; :rofl;
Seriously, I am so happy he is feeling better!!! That is just wonderful!!! :beer1; :yahoo;
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I hope the nurses left him alone long enough to watch the game...getting a few hours by yourself in the hospital is never easy! I also hope you did something for yourself during those couple of hours, Petey. Take care!
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Thank you for the updates! You and Marvin rock as a team. Although, I know you and Marvin would be awesome parents to your new baby "boy," can I suggest letting your wonderful Dr adopt him instead? I can't imagine trying to identify the correct ends to diaper & feed. I hope Marvin continues to improve and doesn't need to wait long for his new pacemaker.
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"The doctors (surgeon, nephs, cardiologists, etc.) are meeting in the morning as a group to discuss his case..."
Petey,
this reminds me of my Mom's case wayback 1997. She went into "sleep" but the doctors prefer to call it "coma.". She was in the best hospital, best care of the topnotch doctors, but they could not find anything wrong with her. The whole hospital went into a conference, neurosurgeons, cardiologist, lung specialist, almost everyone specializing in the human ailments. I was at the conference, but no one was able to come up with a sensible medical explanation what was her illness. We prayed hard, push hard for God. She was on a machine, after 3 days, she woke up as if nothing happens. Her first word..I am thirsty! She was declared in good health. Now she is on ESRD and she is taking it strong, her body maybe frail now by the disease but her spirit and faith carries us on.
You have a marvelous husband as he has an amazing wife.
You are in my prayers,
love
cris
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Thanks for all the kind words of encouragement -- that means a lot to me and Marvin.
Monday, his white blood count was down to 12.7 :yahoo; The "team" of doctors has decided that Friday might be a good day to implant the new pacemaker -- if his blood work still looks good then. That's not so bad. We can hang on a little longer. After the pacer is put in, the docs said expect three - four more days in the hospital. We're hoping that by next Tuesday, Marvin will be home. Then, we'll have to have home health come in to help with the wound vac on his abdomen and administer the IV antibiotics (eight weeks of this).
If you pray, please send up an extra one for my Marvin.
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Thanks for all the updates petey. We are here for both of you, bad times and good. Prayers still being sent your way for successful pacemaker implant. :grouphug;
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Best wishes and prayers to you both.....keep up the good humor and he willl surely have a speedy recovery! :2thumbsup;
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Friday is not very long! That is wonderful news! I'll be praying for you and Marvin!
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Glad to hear that he is mending well. God bless his humor too! Be well, and prayers are being said too. Thank God they found the mass and were able to get it all out. Funny how it was in the spot of the old kidney... did they say anything else about that? Peace and love... :grouphug;
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You two are awesome! I'll be sending all my good thoughts and best wishes your way on Friday.
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So glad they might be able to implant the pacemaker so soon! Lots of prayers will be going your way for a quick surgery and speedy recovery. Continue taking care of each other (and your baby).
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He gets one baby out and they put one baby in. Good luck with the pacemaker.
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Still saying lots of prayers for the both of you :cuddle;
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:2thumbsup; I pray all goes well!
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Good luck, hoping all goes well :thumbup;
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A little set-back on Tuesday. Marvin's WBC came down again to 12.3, so that was good. But, yesterday morning, his heart rate dropped to 30, and the doctors couldn't get it to come back up. They moved him to Cardiac ICU and put in an emergency, temporary pacemaker (with the box on the outside of his neck and the leads run down into the heart). He was better last night when I left. The surgery for the permanent pacemaker is still on go for Friday, as long as Marvin is stable and his blood cultures are negative. Keep your fingers crossed!
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Fingers crossed. Just two more days. He can do this. Come on Marvin!!!!
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Oh Petey, I am sorry. You two are a tower of strength. I keep praying for both of you. :grouphug;
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With you...
:grouphug;
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:grouphug; Thinking of you both.
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Petey & Marvin,
All my prayers are with you, you will get through this. :grouphug; :grouphug; :grouphug;
love,
cris
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Everything is crossed!!! Hope all go's well :grouphug;
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Fingers, toes and eyes crossed! Keep on hanging in there...just two more days! :cuddle;
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Goodness you all are having quite the adventure over there. I hope all goes well through Friday and onward. Good luck and get well wishes for Marvin and hugs of strength for you!
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One more day Marvin....hang in there!!!!
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Petey, how is Marvin today? I sent you a PM--just want you to know I am thinking of you both. :grouphug;
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Good Luck Marvin
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Sending lots of healing thoughts and positive energy to you both - you must feel the love from everybody by now.
Good luck on Friday.
Big Angel hugs to both you.
Sandyb
:grouphug;
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Today's the day! I hope surgery goes smoothly.
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Hoping surgery goes well and everyone comes out on the other side stronger than ever! Keep your great outlook and know we're all thinking about you and Marvin today. Let us know when he's all done! :grouphug;
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Thinking of you both today, and hoping all goes smoothly. :grouphug;
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It's too early for you to let us know, but we are thinking of you and of Marvin today!! :grouphug;
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Joingin everyone else in sending good wishes - particularly today, hope all is well.
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I was in Durham early this morning for an appointment (about 40 minutes from my house) and on my way home I stopped by the hospital where Marvin is. When I got to his room around 9:45, the nurse told me he was at dialysis and Petey was with him. She couldn't tell me anything about the pacemaker surgery. He is in the cardiac wing. I left a surprise for them and a card from the IHD family. It is now around 2:30 and I will try calling the hospital in a while to see if I can talk to Petey. I hate that I missed them. I was looking forward to meeting them.
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Thanks Paris, bet that card will lift their spirits, what a kind thought xx
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i'm so sorry to hear all the trouble you've been having. and i was complaining about me. hopefully the pacemaker surger went off without any problems today and marvin will soon be home. you are in my prayers.
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:cuddle;
Here's a cyber-hug for both of you. Hope all is well.
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Marvin's pacemaker surgery went exceptionally well!! The new, permanent pacer is in and working great! They took the old pacer out and also took out the temp. pacer they put in his neck. The doc told me everything looks great! He's in C-ICU but should come back to a regular room today. :yahoo; It's 6 a.m. Sat. morning now, and I just called his night nurse in ICU, and she said he had a "totally uneventful night" -- that was good news. She said he had slept almost all night long and made her job very easy. I'm heading back up to Duke in a few minutes (3-hour trip). So, right now, it looks like things are turning around for Marvin -- keep your fingers crossed that it continues (and a prayer or two wouldn't hurt, either).
All of the encouragement, thoughts, prayers, and support from all of you has really made this easier for me.
Paris, when they brought me Marvin's belongings (because they moved him out of a reg room and into ICU for the night), I found the surprise you left us. I am usually a tower of strength, but when I saw that you had made the trip to see us and left us the goodies, I cried. But, they were tears of joy and love. I can never, never, never tell you how much that meant to us! You are truly a part of our "family," and it touched my very soul that you took the time to come and check on us. What in the world did Marvin and I ever do to deserve friends like you?
I can't wait to get him home (maybe Monday or Tuesday, the docs said). I also can't wait to get the time to get on the boards again and catch up on all the news.
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Great news!!! So glad he is doing good :thumbup;
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Petey, I tried calling his room and now I know why no one answered! I just kept hoping he was in surgery. I was so glad to see your post and find that he is through the surgery and now can start healing. I was looking forward to meeting you both and we will make that happen one day. I figured anyone can always use more 'kisses' and remember the old commercial where the dad made everything better by sharing life savers? I know, my mind works strange! And the chapstick and hand cream I included because I always get dried out in hospitals. Really, I just wanted you both to know how much your family here cares for you. I hope you both can now rest and the day you go home comes soon. Post when you can and also, give our best to Marvin. We are always here for both of you :cuddle; :cuddle;
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So glad everything went so good. :grouphug;
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:yahoo; :yahoo;
So glad to hear everything went well and he had a quiet night! Praying that the next two or three days are just as uneventful and he can go home soon. Continue taking care of yourself, Petey. :cuddle;
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Wonderful news. :grouphug;
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Yay Marvin! Yay healing! So glad it went well. Now get some rest!
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YAY!! Marvin's surgery went well!!!! Now, Petey, get some rest, so you can spoil Marvin when he gets home!!!!! :2thumbsup; :2thumbsup; :2thumbsup; :2thumbsup;
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Great News!! :yahoo; Hoping for more good news soon.
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:clap; Marvin - Here's hoping for some peace and rest and good healing! Hugs for you Petey! :cuddle;
Paris, you are so wonderful - it warms my heart to hear you stopped by! :)
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:clap; :grouphug; :clap;
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Family is family--we take care of each other. Just like you, Okarol, and sending our dear Goofynina flowers. We all are in this together. I so wanted to meet them both and I am sure we will soon.
Petey and Marvin, take care of each other. You make a great team! :grouphug;
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:yahoo; Great news, hope Marvin is home soon. Remembering you both, with all IHD family, in my prayers. :grouphug;
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Petey & Marvin,
Now I'll say a prayer of thanksgving for your successful surgery and for Marvins continuous recovery. You have been in my thoughts for the last days, in every novena and sunday mass we had. You are an amazing couple, the love you share is eternally magnanimous, I hope we can be like you.
love,
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Marvin's recovering quite well. They took the chest tube out today (Sunday) -- and he felt soooo much better after that. The new pacemaker seems to be working terrifically. The heart surgeon went back into the old incisions from his first pacer -- there's one about mid-way his abdomen on the left side (this is where the actual "box" for the pacer was placed) and one kind of long one under his left breast (this is where the surgeon spread his ribs and attached the "leads" of the pacer to the outside of his heart). Marvin has the wound vac on the site where the hematoma was removed (lower right abdomen). So, he's sore on both sides! Marvin is telling all the nurses and doctors that the hematoma site is where he had a C-section and the others are where he had a breast implant. He's a nut!!! There's no telling what that man will come up with next!
Right now, the team of doctors is trying to figure out how he can get his IV antibiotic on home hemo. The NxStage machine doesn't have a mediport that will allow IV antibiotics. The doctors at Duke (Durham, NC) say they've never seen very many home hemo patients at all, and they've never had one who needed IV antibiotics at home for eight weeks after discharge. So, they are researching to find a way to let us do this at home. We know we'll need a home health nurse to help with the wound vac, and we're suggesting that he get his IV antibiotic after treatments -- I'll pull the arterial needle but leave the venous for administration of the antibiotic. I think an IV box would work to push it in. Now, they're wondering how much of the antibiotic his NxStage machine will pull off during 6/week treatments -- we can't risk it pulling off too much. We've got to find the right dosage. Has anybody out there had experience with IV antibiotics on NxStage?
When this all started and the doctors told Marvin he'd have to be at Duke for a couple of weeks, he took it quite well. When they told him he would need a whole new pacemaker and new leads, he said okay (even though the first one was only put in in December). When they told him the infection (MRSA) would take him temporarily off the transplant list (they moved him to "inactive" status -- his time still builds), he accepted that okay, too. When they told him the hematoma had to come out and he'd have a wound vac on his tummy, he handled that okay (even though we've had experience with a wound vac before). When they told him he'd need eight weeks of a strong IV antibiotic (daptomycin), he was okay......But, when they told him he might have to go back in-center for the eight weeks to get the IV antibiotics, he was absolutely pitiful. His big, puppy-dog eyes filled full of tears and he begged in the most pitiful voice I've ever heard, "Please don't make me go back in-center. Please find a way to let me stay on home hemo." I had to bite my lip to keep from crying.
We're hoping he can come home on Tuesday.
I have so much catching up to do here. I also have so many experiences to share, but I don't have the time right now. I'll get to that when my Marvin comes home.
Thank you all for being here for us. We (especially me) needed you during this time, and you were there for us.
Love you all!
petey (Marsha)
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Poor Marvin's been through so much in the last few weeks. I'm sure if it had just been going in-center for a couple of weeks, he might've been ok, but who can be expected to take all he's been through and not say, "enough's enough, already!" I applaud Marvin for holding up as well as he has and you for being there for him and both of you for keeping a sense of humor through it all. :clap; You're both an inspiration to me, and I'm sure many more on IHD.
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I say give Marvin whatever he wants! :cuddle;
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What a tower of strength Marvin is. I would have been crying long before now. You two are amazing and work so well as a team. I am praying you can go home in a day or two, continue home hemo and finally get to rest in your own bed. You both must be worn out. Sending lots of love and prayers :cuddle; :cuddle; :cuddle;
Petey, WillieandWinnie send their love too. Kathy has been pretty sick with Vertigo and Len was back in the hospital, so she hasn't been posting. She asked me to send her love to both you and Marvin and looks forward to posting soon. She said she continunes to keep you both in her prayers. :cuddle;
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Marvin has been so strong through so much! I hope you all can figure out how to do the antibiotics at home. Sounds like the docs are working on it and not just saying no, so that's excellent. Hope you two catch a break at last!
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Did the Dr's come up with a solution for Marvin so he can get his antibiotics at home? Will he be able to go home today? Keeping you both in my thoughts & prayers!
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Petey, how is our Marvin doing today? I am hoping you are home and both are resting. Did they work out the antibiotics? Still keeping you both in my prayers :grouphug;
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I just got Marvin home about an hour ago!! :yahoo; He's sore, weak, and absolutely pooped out, but he's so glad to be home. I'm not sore or weak -- just pooped, too! I'll have to get caught up here tomorrow.
We couldn't get it worked out to do antibiotics at home, and we'll have to go back in-center for about six weeks. It's a long story, and I'll have to tell it to you later. I'll tell you now that the ending sucks! But, Marvin, with his ever-present optimism, says it could be worse.
How's Goofynina? I know there's a long thread on her situation, but I haven't had the time to read it. Somebody give me a quick update, please. I've thought and worried about her for the last couple of weeks. How about willieandwinnie and her Len?
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Welcome Home - sorry to hear Marvin has to go back in-center.
Bet it will be nice to sleep in your own beds!!!
Take care
Sandyb
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The first night back in your own bed after the hospital is always bliss! So sorry he's going to have to go back in-center for awhile, but as always, his attitude is fabulous! You two will make it through this, too.
On February 6, Sluff told us that Goofy has developed an infection of some kind and was dehydrated. She has gone back into the hospital, and they are treating both, but as of today there has been no change in her condition. We all of course, keep her in our thoughts and prayers constantly. I have not seen any posts lately from W&W. Sorry I couldn't bring better news. :(
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:2thumbsup; So glad Marvin is home, hope you can both get some rest with having to go back and forth to the centre. At least it's only for 6 weeks. I do hope things will go well for both of you from here on. :grouphug;
EDITED: Fixed smiley - okarol/moderator
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Good news!! Hope you both get the rest you need, both of you in our prayers :thumbup;
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Keep praying for Goofynina. WillieandWinnie are both feeling kind of bad. Kathy has vertigo and is causing her to not feel well. Len is still fighting, had been back in hospital. She PM'd me asking to send you and Marvin her good wishes and to tell you she keeps praying for Marvin. She said she will PM you when she is feeling better.
Take care of Marvin (and yourself) and both of you get some rest. :cuddle;
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Glad Marvin is home from the hospital. Sorry for the daily trips back but we do what we have to do. Take care of Marvin and of You!
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so glad to hear that marvin is home and things seem to be going well. this has been one hell of a year for many of us. i'm looking to a brighter future.
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YAY!!! Marvin's home!!!!!! I so wish they could have found a way to do the antibiotics. Darn it. But he's home!!!! YAY!!!!!!!! :yahoo; :yahoo; :yahoo; :yahoo; :yahoo;
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Hi petey, I'm so glad that Marvin is home. It sucks he has to go to clinic for antibiotics. Why can't a nurse come to your home and give it to him during his dialysis? Anyway, I'm glad that the pacemaker stage is behind you now and hopefully you can get some rest. I've missed chatting with you. Take care.
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We begged and begged for the docs to find a way for us to give antibiotics at home. Here's what they said:
first, the NxStage machine doesn't have a medport to administer IV antibiotics -- I said I can pull the arterial needle after treatment and leave the venous for infusion of the IV antibiotic -- docs said they didn't think that would work (but couldn't give me a really good reason why not);
then, docs said we don't know how 6 days a week (home hemo) will affect the antibiotic -- they've never had this happen to another home hemo patient at Duke (Durham, NC). This didn't surprise us because every nephrologist, every dialysis nurse, and every other doc up there heard that we were home hemo and they all came to see me cannulate (nothing like an audience when you're in the Cardiac ICU trying to put two big needles in your husband's access) and to ask 1,000 questions about home hemo (Marvin loved this -- he loves to tell people about home hemo). Anyway, they said they weren't sure they could get the antibiotic dosage right (with enough in his system) because all of their research was on 3 times/week dialysis patients. I said just give Marvin half the dosage you would give a regular dialysis patient and give it to him every day (regular dialysis patients get it three times per week). Made sense to me. Docs said this infection (MRSA) was too serious and too widespread in his body for us to take a chance. They said their research had proved effective for 3 times/week dialysis, and they didn't want to "brave new territory" with Marvin's life at stake. I had to agree when they said that one! When they said this, I didn't argue anymore -- even though I had run everything I thought would work by them.
oh, there was one time we said that since a home health nurse is coming out to help (and I use this term loosely because I have been the one to show the home health nurse how to change a wound vac), she could administer the IV antibiotics at home. Docs said NO -- get ready for their reason -- because if he had the antibiotic at dialysis, they were sure his insurance would pay for it as a part of his treatment. If he had it administered at home, they weren't sure his insurance (and he has two insurances) would cover it. You can believe I didn't like this answer. I'm so damn sick of money being the bottom line to everything. I said, "I'll find some way to pay for it at home" (even though I had no clue how I would do this), but with all things considered, they thought in-center was the only way to go. That almost broke Marvin's heart. He hates in-center -- been there (12 1/2 years), done that, and don't want to do it again.
He had his first return-to-in-center treatment today (he had the others while he was hospitalized at Duke) and got the antibiotic (daptomycin). He's been pretty sick on his stomach since then, and I'm watching him closely. At my house, when it rains, it pours. Marvin says this is another test from God to see how we handle it; he says he's going to pass this test, too. I say I'd like to just put my name on the paper and turn it in, but he won't let me.
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Ohhhh petey, I am so sorry. Our clinic would never let me give Len iron or antibiotics at home. Bottom line is that almighty dollar. It pisses me off so bad. You know they could find a way around that if they really wanted too. You don't want to screw around with that MRSA bug, it's nasty.
Marsha, we had the same thing happen to us at Washington Hospital Center when they found out we did home hemo, we had all the nurses and the Neph sitting there watching me hook Len up to the machine. I was so nervous, but I did it perfectly and they were impressed. Len also loved to tell them we were home hemo patients and would talk to all the doctors about it. they had never heard of anyone doing home hemo so they had lots of questions. I did Len's last dialysis at WHC hours before his transplant. ;D
We are pretty lucky here when it come to home nurses, we have had some really good ones. One of them is actually my sons girlfriend of 2 years now. All the ones we had traveled over an hour to treat Len.
I would be watching Marvin pretty close too, maybe he should take something to eat with him to clinic when he gets the antibiotics, I am taking some right now and they mess with my stomach. Doctor said to eat when I took them and that seems to help.
Len and I are with you and Marvin on this test from God, we have been tested, retested and tested some more. :banghead; I just know I have pass, so let up already. >:D
petey, you take care of Marvin and yourself and I'll be saying a special pray for you.
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Testing 1 2 3... testing... ;D
Sigh. I really wish you you could do it at home, but I guess not... Knowing you two, you'll find some way to make it fun, or at least to make fun of it, and soon he'll be back home again, getting the high class needling he's used to!
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I'm so sorry he has to go back to in-center for this. Look at it this way, at least it's only temporary! (Though I'm sure you two will find a much more fun way to look at it!)
Glad to hear you two could educate the docs and nurses about the option of home hemo...this is how more patients get offered the option! :clap;
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:grouphug; to you both. I hope the next few weeks pass quickly so you can get back to your normal life.
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Petey, can Marvin have live yogurt? If so then he should try to have a pot a day with the antibiotics to help his stomach - at least that's what they tell us i the UK and I guess everyone in the world has a similar gut system :)
I'm sorry to hear he has to go back in centre but better safe than sorry with that MRSA.
Bless you both xxx
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I hope things go well, will keep you both in our prayers.
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Good point, Rose, Marvin does need to have something in his stomach before he gets the antibiotics.
And you know they are gonna really mess up his stomach. grrrrr.... as if he needed this!!!
Hang in there, it's gonna get better!!!! It's gotta!!
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The two of you have been through so much. Lots of love and hugs your way... :grouphug;
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thanks, all...
Marvin had a pretty good day today. So far, he's managed to keep down grits, Fruit Loops, peach halves, and a bologna sandwich. I know it's some weird stuff to be eating, but when he says, "I think I could eat..." I go and fix it -- no matter what it is.
I'm thinking his pain meds (Tylenol #3) may be a part of what is making him sick on his stomach. He didn't need any today, and he wasn't sick. But, then with all of the infection, with the strong IV antibiotic (Daptomycin), and with everything else that has been put in his poor body, there's no telling what the cause is (may be a little bit of everything).
Today was better than yesterday. We're hoping tomorrow is better than today.
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One of the best signs of the road to recovery is building an apetite. WooHoo! :bandance; Get well Marvin.
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Tell God that WE give you an A already. You passed.
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Keep feeding that boy! I hope he gets stronger and can get back to home hemo soon. :cuddle;
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May every 'today' be better than 'yesterday' for both of you. :cuddle;
Oh and I just had to say - out of that list of food I'd only ever heard of peach halves. We all speak 'english' but have such different terminology, like grits are little piece of stones to me, but I'm sure that's not really what he ate! Just imagine :rofl; :rofl;
Take care both of you :cuddle;
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Rose,
I forget that IHD has members from all over the world.
"Grits" are a finely ground corn meal. They are a very "Southern US" breakfast meal. They are boiled and served hot, and end up kind of paste-like. I didn't grow up in the south, so I have had some trouble getting used to them. Marvin, a good ole southern boy, has loved them all his life. They are a little bland in taste, but you can add butter or cheese to them (if you like).
"Fruit Loops" are a kid's breakfast cereal. They are sugary and sweet. Marvin is a 52-year-old "kid" who still loves these types of cereals.
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Thanks Petey, I now have a much nicer picture of Marvin's taste in food! :rofl;
All the best to both of you
Rose xx
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Petey, Hope each day Marvin gains a little more strength. My wish is that by summer, he will be feeling great and we can meet up somewhere! I am going to keep working on that thought--I like to have goals to work towards. You are doing an incredible job as caregiver. Marvin is certainly blessed to have you for his wife.
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Paris,
After everything that has happened in the last few days (Goofynina), Marvin and I have determined that we MUST meet you. (I re-read the post where Susie went to meet Epoman, and it was so special for both of them...the opportunity of a lifetime.) We're hoping that a couple of months will find Marvin much, much better (and without the Wound Vac). Then, we want to make plans to come up to Raleigh, maybe have dinner, and put our arms around you and AlohaBeth in a big IHD group hug. Are you game?
If Marvin and I have learned anything from Susie's life and her love for IHD folks, it's that these bonds we're making on this site are strong and for a lifetime. The friendships here are to be cherished and nourished. Let's make sure we follow her example...besides, wouldn't it make Sluff insanely jealous to see us post a picture of the four of us eating at Macaroni Grill (in Cary)?
petey
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YAY, Marvin!!!
I'm so glad to hear you're eatng, and good stuff too!!! Gotta love kid's cereal!!!!
Petey, keep feeding him, whatever he wants!!! When he is off the daggone antibiotic
is time enough for the diet. That's my story and I'm sticking to it....
Hang in there honey, we're rooting for the two of you!!!!
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Petey, Marvin and food---sounds like a great combination! We will make it happen. We owe it to Epoman and Goofynina. I am making a persona goal to meet more "family" this year. Ohio Buckeye is on my list and somehow I need to go to PA. and meet Romona. In the meantime, I'll keep sending good healing wishes to Marvin and love to both of you. :cuddle;
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I love Froot Loops and Captain Crunch Cereals. The kid in me loves sweet cereals. I like to take grits and make them thick, then fry them up in lots of butter, then put maple syrup over them. Yummy.
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I am thrilled to be on your list Paris.
How I wished I could have gotten to Lv.
I will ride with you to PA to meet Ramona if you need me to.
How great that would be.=!!!!!!!!!!!!!
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Petey, Marvin and food---sounds like a great combination! We will make it happen. We owe it to Epoman and Goofynina. I am making a persona goal to meet more "family" this year. Ohio Buckeye is on my list and somehow I need to go to PA. and meet Romona. In the meantime, I'll keep sending good healing wishes to Marvin and love to both of you. :cuddle;
Let me know when you swing by Pennsylvania to meet Romona, she isn't too far from me :thumbup;