I Hate Dialysis Message Board
Off-Topic => Other Severe Medical Conditions => Topic started by: petey on November 12, 2009, 06:31:08 AM
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Hello, my IHD friends! I've been on a temporary "vacation" from IHD, as most of you know why. Now that I'm able to come back, I'm afraid I won't be around much at all.
My husband Marvin has been very sick this past week. He, once again, has MRSA (wicked, wicked form of staph -- he had it in 2007, damaged his heart, had to have a pacemaker implanted). It settled on his heart valve again this time, but there has been no damage to his heart (thank God), and his heart and pacemaker are functioning at more-than-adequate status. However, a piece of the infection traveled to his brain and he had a stroke on Tuesday. At first, he had no use or control over his left arm and left leg. His speech was very slurred. But his memory, thinking capabilities, and delightful sense of humor remained completely in tact -- and, in fact, are working OVERTIME. He and I have been working around the clock to help him regain strength and use in his arm and leg, and he has made MUCH progress from the onset of the stroke. We realize that his recovery and rehabilitation will be a long, hard road, but there is nothing --absolutely nothing -- the two of us can't accomplish when we set our minds to it. Life is hard, but it is still very, very good.
I have missed being able to "talk" to many of you here, and now it looks like it might be even longer before things are back to "normal" for me.
P.S. Note to those (and you know who you are) who found me other places and stayed in contact with me over the last month -- My heart is filled with an ocean of love for you. There are not adequate words to tell you how much that meant to me. You are "friends" in the truest sense of the word. Thank you very, very, very, very, very, very, very much.
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Petey, I don't really know what to say. You've had such a rough time lately but one thing I know is that if anyone can make it through this it is you. Best to Marvin too! DWCr
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Oh Petey....
You poor thing!...
Poor Marvin....
I hope and pray that it all works out well for you and Marvin.... Please keep in touch.... And let us know what's happening.... And there I was, feeling sorry for myself that Mum has been unwell for the past month with a UTI, and chest infection!...
God bless, and you and Marvin will be in my thoughts and prayers...
Darth....
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Petey, Do you know some days we all feel like we have the world on our shoulders, reading your post I realise, life is not that bad for alot of us. I feel for you and your husband and what you are going through. You sound so positive, I wish you both all the very best, my prayers will be with you. Take care.
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Oh, Marsha!
This brought tears to my eyes. But I know that you and Marvin have the strength and determination to overcome even THIS!
I will hold you in my heart. I will send you every ounce of powerful healing thoughts possible. I will be thinking of you constantly.
Hugs to both of you. In fact, imagine long, long arms of support reaching all the way from me to you.
Love, and hope, and kind wishes,
Aleta
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Petey, I hope that Marvin and you can work together for a speedy recovery.
:flower;
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I am so sorry to hear!
You are right, you both have hard work ahead of you..... Please hang in there and I hope he recoveres quickly.
WELCOME BACK!!!!!! YEAH!!!
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So sorry, Petey. You and Marvin can do this - we all believe in you!
Glad to see you back.
Take care :cuddle;
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So sorry to hear of this thing with Marvin. You two guys are so tough, I know you will both recover. We missed you a great deal, and hope that things get better for you really soon.
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So sorry to hear of the continued challenges that Marvin has to endure. Please be assured of my caring thoughts and prayers for you both. :grouphug;
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Hugs to you and Marvin! Stay strong, petey.
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Sending love to you and Marvin.
:cuddle; :cuddle;
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Dear Marsha, I am so sorry what happened to you and Marvin.
I keep my fingers crossed that you both get through this alright.
Missed you a lot and wish you well... take care...
best wishes from Kristina. :grouphug;
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Sending my best wishes to Marvin for a speedy recovery. Hang in there Petey! :cuddle;
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so glad you are back with us. pop in whenever you can. my prayers and love to marvin and for you too. you know what they say...when life hands you lemons make lemonaid!
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I'll be sending strong thoughts your way every single day Petey and Marvin. This is awful news and I hope Marvin makes a full recovery.
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I will think of you both-I hope Marvin has a good, fast recovery- and I am sorry for your troubles. :grouphug; :grouphug;
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Best wishes to you both Petey. :grouphug; :grouphug; :grouphug;
My grandmother had a stroke and the physical therapy was very difficult for her. The hospital arranged for home therapy but she dreaded the sessions, it was such hard work. A very clever physical therapist showed up one day with a small tape player, plugged it in and turned on the music. He bowed, put out his hand and proceeded to waltz grandma around the family room. You never saw such a big smile, and she got a great work out too. She looked forward to her ballroom dancing partner every week, and my grandfather, who had a bad knee, was so please to see his wife dancing, and getting better in the process.
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I'm sorry to hear this and wish both of you all the best in his recovery. :flower;
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Sending healing thoughts and prayers for Marvin. Hope the recovery goes well. :grouphug;
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Petey it makes me so sad to hear this about Marvin. I know what you are going through, my Mother had a stroke that affected her left side.
Hard as it is I know you and Marvin will make it. My prayers are with you both.
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Any news, Petey???....
:grouphug;
Darth...
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On FB Petey posted this news (from Thursday):
With the help of a walker and a strong wife, Marvin took a few steps today. He was slow and mostly shuffled, but he was walking!! We also worked for hours on exercises for his arm, leg, and speech. He told me I was working him like a "rented mule," but he pushed himself and wouldn't quit trying until I told him we had done enough for one day. Today was a good day; our hope is that tomorrow will be even better.
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Thanks a million for the info, Willow...
Sounds like Petey's got the whip out!.... :rofl;. It's GREAT news!....
Best of luck to Petey and Marvin...
Onward and upward!...
Love...
Darth...
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Darth, the whip is definitely out -- and I'm using it!!
We are at home now. Came home last Friday night at about midnight. We left AMA (against medical advice). All of the doctors (neurologists, infectious disease, nephs, cardiologists, PT, OT, etc.) agreed with me Friday morning when I said, "It's time for us to go home and get Marvin on the road to recovery." The three times a week treatments in the hospital were damaging his body because he's so used to daily. We had to get back to our NxStage machine and more (and gentler) dialysis. We had to get more PT (only 30 minutes a day from the hospital PT -- with a couple of hours of "supplemental" PT from me). We had to get back into a routine of daily living to make Marvin feel like he was still a functioning person (that tiny hospital room was driving him crazy). We could get the IV antibiotics at home (that's a side story I'll tell in a minute). Everybody agreed with me -- except the attending physician (internal medicine guy). This doc was an ass -- an out-right ass. He knew NOTHING about home hemo and very little about dialysis in general. He said we needed to stay another week or two so he could "monitor" Marvin closely. I said, "I can do that at home." He said, "So you think you're a medical expert?" and I said, "No. I think I'm a Marvin expert. I was the one who noticed something was wrong the day he had the stroke and told you 12 times that something was going on and you just kept brushing it off. I'm the one who knows almost everything there is to know about the benefits to Marvin of daily hemo. I'm the one who knows every single bit of Marvin's medical history, what his body can tolerate, what antibiotics he's had before and how he responded to them. You may be a doctor, but you only know Marvin on paper. I recognize the whole person and I do know what's best for him."
Then, this doctor started to tell Marvin what would happen to him if he had another stroke -- and he was blunt and quite mean about it. So, I said, "You are NOT -- I repeat NOT -- going to try to scare this man after all that he's been through. If you feel the need to scare somebody, let's go out in the hall and we'll see if you can scare ME -- because I guarantee you you can't!" He shut up. Then I said, "Even if Marvin has another stroke, you and the best 100 doctors in the world could be standing around his bedside and you wouldn't be able to stop it, now would you?" "No," he said.
Then I said, "ESRD will shorten Marvin's lifespan anyway, and we don't have a day to spare to sit in this hospital while you 'monitor' him. We've got to go on with life and we can't do that until we get out of here."
This doc strongly recommended in-hospital, acute rehab for a couple of months. I looked at Marvin, and his eyes filled full of tears. I said, "ABSOLUTELY NOT. With a homehealth PT and with me, he can get more intensive, tailored PT. We'll do it at home." He did not like that at all, but I did not care.
For some reason, I don't think that doctor likes me!!!! lol lol lol
We did have to sign a form saying we were leaving AMA.
Marvin's NxStage machine does not have a port for IV antibiotics, and Duke said they didn't know at first how to set the dosage for his Daptomycin (6 weeks of it) because he has daily dialysis. They said they had never done that. I said, "Find a way. We'll be your first." The ID docs researched, researched, called NxStage, and researched some more. Then, they set the dosage. We will do blood draws at home every week to make sure he has the right amount (not too much, not too little) in his system. They also said they had never had someone do bloodwork at home and send it to them. There's another first. They asked Marvin if they could use all the info from this "experiment" in their research to help another home hemo patient in the future, and he agreed.
I think Marvin's doing remarkably well. He can scoot around with his walker, and his steps are getting a little better and a little faster (but still pretty slow). He and I have been working, working, working with his motor skills with his left arm/hand, and it is getting so much better. I'm also practicing speech with him (you can find a lot on the internet!). He's eating better, and, best of all, we're back on NxStage and having daily D treatments (that's a BIGGIE). I'm pushing, and Marvin is trying so hard. We have set goals, and we're both working to achieve them. I'm watching him like a hawk and haven't left his side for a minute. He's very appreciative of all I'm doing for him.
I know this is long, but I was trying to catch you all up. I still think of you all even if I'm not on IHD much.
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Good on you, Petey!....
You're the dog's danglies!!!!!.... ;D
You're SO right!... Hanging around the hosp would drive a saint to sin... It's not a real enviornment.. We do SO much better in our own homes... Watching our own TV, eating our own fod, sleeping in our own bed, etc...
I have given the same answer as you when a doc scared Mum... Pluse a few choice words added!... People like that are bullies, pure and simple!... Just because he wasn't getting his own way, he was throwing the toys out of the pram!...
The very best of luck to you and Marvin... Keep fighting the good fight!...
Keep us unformed, and keep the flag flying!...
God bless...
Darth....
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Petey, You are to be applauded. :bandance; :bandance; Bravo for sticking up to the Doctors. :bandance; :bandance; Bravo for having the balls to say "enough is enough " :bandance; :bandance; It sounds like Marvin is doing ok, I am so pleased. Dont forget to get a little you time other wise you will fizzel out and that's no good is it.
Edited: Fixed smiley error - paris, Moderator
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Petey,
Once again you demonstrate why you are an INSPIRATION to all of us! Especially me!
I love you for what you do and how much you accomplish and for what an outspoken, strong advocate you are for the man you love!
I know your decision to get the hell out of the hospital was the right one! There is NO WAY that Marvin could improve on a 3x/week tx. No way!
Keep up the good work. Get some rest when you can. And know tat I'm sending so many hugs.
:grouphug; :grouphug; :grouphug;
Aleta
PS. My support over the past month was so little. I wish I could have done more. :waving;
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Rock on, petey! :2thumbsup;
I don't think a team of professional speech writers could have written a more intelligent, brave and effective response than yours to that doctor. Hopefully that guy will think twice before bullying the next caregiver.
Cheers for you and Marvin!
:cheer: :cheer: :cheer:
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Go the mule!!!
Well done Petey - I always say just being in a hospital makes you sicker, so I think you've done the right thing. And as you say, you know his needs better than a doc.
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Marvin is a lucky man to have you Petey.
With a lot of hard work, hopefully Marvin will regain much of his strength. It may take a while, but with the two of you working together he will do fantastic. I will be thinking of you both and wishing Marvin a quick recovery.
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Petey, you are one AWESOME woman. Good, good good for you for letting that butthole Dr. have a piece of your mind. Well Done!!!! Good luck to both of you.
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You and Marvin have your work cut out for you in his recovery. Good luck and God speed!
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Sorry petey I haven't kept up on FB or here on Marvin. That doc is a true idiot and glad he is not one of my doc's, allthough he sort of sounds like one who goes along with my transplant doc's bedside manners and thinking.
Then when you said "They also said they had never had someone do bloodwork at home and send it to them.", wth, don't they have experience with home health nurses who do the same thing? I have had home health nurses from my transplant hospital and other agencies take blood and then take it in to the local hospital along wiith an order and have it tested with no problem. "IDIOTS, IDIOTS I say!" (forgot what movie that's from)
2 months in the hospital for PT! Holly Cow, look at what jbeany has gone thru in less time and we can do better on our own.
Keep improving Marvin!
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Yeah!
Good for you both!!!! I think with more people like you a lot of "it has always been like that" will dissapear of the earth.... it just irks me when that is the reason.
Keep it up!!!! Hope he gets better and better and betterer (like my kids use to say)
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Hi Petey...
Any news???...
Love to you and Marvin...
God bless...
Darth...
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Hi Petey... remember me? I hope everything is getting just a little better everyday. Stay strong.
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Each day brings a little more improvement for Marvin. I actually worked Thursday and Friday (got his nephew and his sister to "babysit" him so I could go to school). His speech is perfectly normal, and the "droopy" that was at first present in his mouth and left eye is completely gone. Left arm is probably about 80-85 % back to normal and shows more strength and more control every day. Left leg is much, much better -- walking, getting up out of the chair/bed, etc. He could walk without the walker, but we're still using it "just in case." This morning, Marvin wanted to get in the shower; the "bird baths," he said, just weren't getting it. With help from me, he was able to step over into the bath tub and stand while he showered. First "real" shower in two weeks, and he said it felt wonderful! (Don't think I've been letting him go around dirty -- his baths for the last two weeks involved a pan like you get from the hospital, lots of washcloths, and my doing all the "bathing.") After his shower this morning, he even stood at the sink to shave -- he doesn't like the way I've been shaving him. I expect that in time (how much time, I don't know), he'll make a full recovery.
I always thought that being a caregiver for a dialysis patient was tough -- but it's nothing like being a caregiver for a stroke patient. WHEW !! This is a job!
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Petey, you are a wonder. And sometimes I'm sure you wonder where you get the strength!
This is great to hear. Like you, I'm sure that Marvin will recover 100% because you are there helping him each step of the way.
Just think how much better he is because you came home.
I hope you can take a little breather this weekend. You need it.
Hugs to both of you.
Aleta
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Sounds great Petey. With that kind of improvement already, I'm sure he'll be back to his usual self soon. Hmmm - you might like him quieter!!
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Glad to hear that things are improving. :grouphug;
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Your Story, reminded, Me of what Happened, when My Husband, was first Hospitalized, with Complete Renal Failure. After being in the Hospital for Five Weeks, ( He was now, sitting in a Chair every Day, watching TV and going Crazy ) a Doctor, pulled me into the Hall and said, " We would like to Move Him to another Floor and do " Diet Therapy " on Him and He would be there for another Month!
I made a Split Second Decision and told them " No, that would Kill Him " I know My Husband, they don't. Three times in the Last Three Years, for different Conditions, I have had Doctors, call Me at Home, late at Night and say " We need a DNR Decision, from You, right now " It's Difficult, being a Patient Advocate, Especially, when You are doing it Alone. I Respect Doctors, so Much, but they Read Charts, they don't Live with the Person. You know what Your Husband needs and in what Environment, He will Thrive best.
Prayers to You and Marvin Tonight.
We are still doing good here! Hold Your Ground, on Decisions, You think are right!
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Great News Petey, I hope you see that dumb :sir ken; doc and show how much progress YOU have done WITHOUT him! :2thumbsup;
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:2thumbsup;
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:boxing; keep up the good work! :2thumbsup;
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Glad Marvin's progress continues to move forward :2thumbsup;
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Wonderful news, Marsha. Here's hoping every else is better too.
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Petey...
You're the best.... Marvin's lucky to have yo... There again, so are we!...
Love...
Darth...
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Since we came home from the hospital on Nov. 13, Marvin has only been out of the house once -- to go to his GP's office. Today was different. After his shower (which tired both of us out), we rested a few minutes, and then we went OUT. We got something to eat (drive-through at Kentucky Fried Chicken for him, but I don't like chicken all that much, so a Sonic burger for me) and had a "picnic" in the car. Then, we rode around the country side, looked, and talked. I stopped at Belk's to get a few things, and Marvin stayed in the car. We rode around some more. I stopped at the grocery store (Marvin stayed in the car and text messaged me the whole time I was in the store..."Get some grapes," "Don't forget a loaf of bread," etc.). Then we rode around some more. We got back home after about 2 hours and got Marvin back in the house. Marvin said, "That's probably the worst date we ever went on," and I said, "No, it was probably the BEST one!"
Now, it's time to put him on the machine. Good day today.
Wonderful news, Marsha. Here's hoping every else is better too.
Yes, Dan, most of my life is better now. I'll have to catch you up on everything later.
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Great news, Marsha!
I am glad for you both,
best wishes from Kristina.
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How cute that Marvin thinks of it as a date. :)
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That sounded like a wonderful date to me. keep well both of you.
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Petey, you two are just amazing. I am so glad he is improving.
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You two are so sweet together. :cuddle;
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Petey, you are amazing! I know Marvin is going to be 100% because of all your great care! :cheer: Try to get some "you" time so you can recharge. You are in my thoughts and prayers. :grouphug;
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I think that in alot of cases the person will recover better in and around places they are happier at and with the one's they know and love.... it certainly proved correct for you and Marvin. Wonderful news that he is doing so much better and improving daily. You are a saint :grouphug;
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Ok people, Petey is a strong, wise and fabulous person BUT SAINT? Come on now! Hehe
Not exactly a term I would apply. Do you know how Marsha came to be called Petey in the first place?
Love you, Petey.
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....oh, no you don't, Dan! You wicked, wicked boy!!! And if the others want to call me a saint, you shut your trap, Danny Boy!!! lol lol lol :rofl; :rofl; :rofl;
But, seriously, Dan's right -- I'm not a saint. I'm just doing what I have to do. I'm just doing what all the other caregivers here would do. I'm just taking my vows of "...for better, for worse -- through good times and bad -- through sickness and health..." very seriously. I'm just doing for Marvin what I would want him to do for me. I'm just your ordinary, average, loving wife. (But I will agree that Dan's right about my being strong, wise, and fabulous :2thumbsup; )
Marvin gets better with each day. He can walk around the house without his cane or his walker. His speech is perfect, and his left arm is getting stronger and stronger. We've been out almost every day on some kind of excursion. He's back to about 90% of what he was before the stroke. His spirits are good, and he still laughs a lot. Today, we're headed back to Duke for a check-up; I'm sure the docs there will be shocked at how well Marvin is doing (they haven't seen him since we left the hospital on Nov. 13).
Thanks to all my friends here who sent me messages and cards to say "Hang in there!" and a BIG, BIG, HUGE "I love you" to dwcrawford!!!!!!!!! If I had met you before I met Marvin, you would have been my pick, Dan!!! (Just not sure YOU would have picked ME back :rofl; :rofl; :rofl; ).
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...and I love your new avatar picture, Dan! It's so .... YOU !!! muuuuuuhaha!
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Oh, Petey,
You are going to AMAZE them at Duke! :cheer:
I would love to see their faces when Marvin WALKS in! Yeah! :clap; :clap; :clap;
You are wonderful. Many hugs and :bestwishes;
:grouphug;
Aleta
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Great news, Marsha....
Fantastic to hear that Marvin's doing so well....
Love...
Darth....
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:clap; Glad Marvin is improving. I know you don't know me but I fel like I know you having rad some of your posts. Rob
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:2thumbsup; :clap;
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Good check-up with the Infectious Disease doctors yesterday at Duke. They took Marvin off the IV antibiotics (Daptomycin) that he had been getting for the last almost-five weeks. Took out his PICC line. Switched to a less-strong antibiotic (Zyvox) -- oral -- for two additional weeks "just in case." Doc said we made the right choice to do everything at home (IV antibiotic, physical therapy, etc.) -- like we hadn't already figured that one out. Doc said Marvin was a "walking miracle" and hugged us both. They drew a couple of gallons of blood for study and cultures and made us another follow-up in two weeks. (Through this whole thing, Marvin is the "guinea pig" for a research study at Duke on how to handle home hemo patients who need IV antibiotics and choose to do it at home as opposed to having to go back in-center temporarily. Our hope is that it will help someone else like him down the road who needs the same treatment.)
Marvin managed the three-hours-up-and-three-hours-back trip just fine!! He wanted to carry his walker and his cane because he wasn't sure which he would need. The walker never made it out of the trunk!!!!! He used his cane just for balance and "just in case." We stopped for supper, and when we finally got home, I was pooped -- but Marvin still had some energy! I went to bed early, and he stayed up until about 11. The man is amazing!!!!
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Great news, Marsha....
Great to have Marvin doing so well at Christmas... What a great gift!...
I'm crossing my fingers that Mum will be well this Christmas... Don't even want to consider the possibility of a repeat performance of last year's!....
God bless...
Darth...
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Glad the doctor somewhat admitted he was wrong. :2thumbsup;
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I am posting from my iPod but wanted to let you all know that I am THRILLED.
:2thumbsup;
Give that man a big happy hug.
:cuddle;
Aleta
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:2thumbsup; Yay Marvin - good news!
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:yahoo; Go Marvin!
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Great news Marvin. :thumbup;
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Good for Marvin and his strong spirit :2thumbsup;
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:yahoo; Good for Marvin!!! Any treatment that can be done at home is better done at home. Hospitals are a nesting place for viruses and everything else!!! Plus people usually do better in their own environment.
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...went to church this morning, came home and "piddled" around the house, and then went out for supper with friends. Another good day. I see Marvin improving daily. He has not used his cane AT ALL today!! Yippee!
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Whoo Hee! :2thumbsup;
In no time that man will be running! :clap;
The two of you are wonder workers. :yahoo;
Wonderful, wonderful!
Aleta
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Another check-up today at Duke. The doctor said the last three sets of cultures showed the MRSA was gone. All lab work was perfect!! She said Marvin looked GREAT -- inside and out!! She discontinued all antibiotics and released him. We don't have to go back unless we need her again!! :yahoo; :yahoo; Then she looked Marvin in the eye and said, "You beat it -- the infection, the stroke, everything -- and you did it in record time. I wasn't sure you'd beat it at all, but you've done it in six weeks. You are a miracle!" Made Marvin feel so good (and I was feeling pretty good about it, too). On the way home, we agreed that this was another hurdle, another valley, another crisis we had jumped and survived. We know sometime down the road there will be another, and another, and another -- but for now, we've survived this one. And, right now, that's pretty damn good!
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Fantastic news, Petey....
I wish you and Marvin a very happy Christmas, and all the very best of health in 2010....
May God bless and protect you both...
Love...
Darth...
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:2thumbsup;
You and Marvin rock!
:yahoo;
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You two are the most awesome partners in the PLANET!!!!! :clap;
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For Petey and Marvin. Happy Holidays.
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petey, that is brilliant news. You two have a lovely Christmas now. I my self will be glad when the new year starts, like you it has been a sh**ty year, but we have got through it. Merry Christmas to you both.
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:bandance; :bandance; :bandance;
I am happy for you.... You are such a special person. I think your persistance might have something to do with the speedy recovery.
:flower;
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Marvin had a check-up today at his clinic (required monthly to stay on home hemo). All of his lab work was PERFECT -- the best it has ever been in 15 years!!! Every single line was right in the middle of "normal." We were happy beyond words because we figured with the hospitalization, stroke, MRSA, and everything else --- his lab work would take months and months to get back to anything even remotely "good." We weren't expecting PERFECT.
Also, after the hospitalization, the docs put Marvin back up to six times/week. Today, they cut it back to FIVE again!! Yipppeeeeeee!
P.S. We go back to Duke on Thursday for a re-evaluation to be put back in "active" status on the transplant list (Marvin was put in "inactive" status when the MRSA got him in November.)
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Yay. Go Marvin!!
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Good stuff!
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Oh, Petey! You and Marvin just rock!
I'm so glad that you can go back to five days a week.
Next step - the list! Woot!
:bandance; :cheer: :bandance; :cheer: :bandance;
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Fabulous news! The power of prayer! :clap;
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:yahoo; Very good news - all around!!
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Good news is great to hear. Keep it up Marvin and Petey.
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Marvin was put back on "active" status on the waiting list today (2,246 days this time around). Good news!
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:thumbup; :thumbup; :thumbup;
But who's counting?
:rofl; :rofl;
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Excellent! :yahoo;