Marvin

[petey]

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.

[dwcrawford]

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

[Darthvadar]

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....

[billybags]

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.

[willowtreewren]

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

[Rerun]

Petey, I hope that Marvin and you can work together for a speedy recovery.

                                   

[Des]

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!!!

[cariad]

So sorry, Petey. You and Marvin can do this - we all believe in you!

Glad to see you back.

Take care 

[Jean]

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.

[Bajanne]

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.

[jbeany]

Hugs to you and Marvin!  Stay strong, petey.

[Zach]

Sending love to you and Marvin.
 

[kristina]

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.

[pelagia]

Sending my best wishes to Marvin for a speedy recovery.  Hang in there Petey! 

[thegrammalady]

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!

[monrein]

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.

[glitter]

I will think of you both-I hope Marvin has a good, fast recovery- and I am sorry for your troubles. 

[okarol]

Best wishes to you both Petey. 

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.

[MIbarra]

I'm sorry to hear this and wish both of you all the best in his recovery. 

[paris]

Sending healing thoughts and prayers for Marvin.  Hope the recovery goes well.   

[Mimi]

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.

[Darthvadar]

Any news, Petey???....

 

Darth...

[willowtreewren]

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.

[Darthvadar]

Thanks a million for the info, Willow...

Sounds like Petey's got the whip out!.... . It's GREAT news!....

Best of luck to Petey and Marvin...

Onward and upward!...

Love...

Darth...

[petey]

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.