marvin's in the hospital

[rose1999]

Great news, hope Marvin is home soon. Remembering you both, with all IHD family, in my prayers. 

[cris]

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,

[petey]

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)

[KT0930]

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.  You're both an inspiration to me, and I'm sure many more on IHD.

[okarol]

I say give Marvin whatever he wants! 

[paris]

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

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.

[Psim]

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!

[Deanne]

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!

[paris]

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

[petey]

I just got Marvin home about an hour ago!!    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?

[Slywalker]

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

[KT0930]

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.   

[rose1999]

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. 


EDITED: Fixed smiley - okarol/moderator

[Joe Paul]

Good news!! Hope you both get the rest you need, both of you in our prayers 

[paris]

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.

[anja]

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!

[thegrammalady]

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.

[MyssAnne]

YAY!!! Marvin's home!!!!!!  I so wish they could have found a way to do the antibiotics. Darn it. But he's home!!!!  YAY!!!!!!!!

[willieandwinnie]

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.

[petey]

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.

[willieandwinnie]

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.

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.  I just know I have pass, so let up already. 

petey, you take care of Marvin and yourself and I'll be saying a special pray for you.

[Psim]

Testing 1 2 3... testing... 

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!

[KT0930]

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! 

[Deanne]

  to you both. I hope the next few weeks pass quickly so you can get back to your normal life.

[rose1999]

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