THR I am the Storm

Merrimay

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What horror you're enduring, @danelady. Do they think the VRE was causing the dislocations, or was it something you picked up during one of your many hospitalizations, and the cause of the dislocations remains unknown?

Is Oritavancin one of the expensive meds your doctor suggested? A former colleague's husband developed VRE after knee replacement. She says it took about five months for him to get the all-clear, but he is doing fine now.
For what it's worth, she said that medicare did cover the costs because it is considered a life-saving med.

She suggested that if you encounter difficulty you should ask your doctor to contact the manufacturer to see if they can get you deep discounting.

Wish I had more suggestions. This is one more cruel setback after too many cruel setbacks, and it breaks my heart. Do not question reasons for your existence!!! We haven't begun to fight and there are several strong antibiotics that can treat VRE! Hope you're able to get some restful sleep tonight. :beg::sleep::puppysmooze:
 

myglasshalffull

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Unreal danelady, what more can be said, this is beyond belief!
Keep us posted and sending nothing but good wishes your way, if good wishes could heal you, you would be up and dancing because all of us here want you better!
 
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danelady

danelady

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Hi Merrimay! Good to talk to you again. Good to talk to everyone again. I'm so glad to hear your colleague's husband pulled thru. Hoping I can too. So yes, @Gray Horse , I still have an active infection BUT my surgeon placed a custom fit tri-flange cup in me and it can't be replaced by an off the shelf device...lucky me.
Hopefully I'll get out of here today. Thank you all. Much love. ❤️
 

lanstan

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I suppose that means another PICC. How many weeks of antibiotics?
 
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danelady

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@lanstan You are EXACTLY right! This time I was awake for the procedure and WOW that was something to watch on the monitor!
Now I'm on Daptomycin...1x day and only a 5 minute push as opposed to the 2x a day and hour long Vancomycin IV.
Thankfully I am now home.
 

CricketHip

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Oh Danelady. I’m speechless and heartbroken for you.
I’m glad you are going to find a physiatrist to help navigate your issues.
Please darling lady, find one in a top notch hospital!!!!
You still have the fight in you and that will get you out of this mess. Hugs and more hugs!!!
I hope you can sleep well.
 

Pumpkin

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danelady,
Mayo Clinic is an excellent suggestion, we have had members who have gone to the Phoenix location for difficult to treat infections and revisions with good outcomes.

Here is the phone number for Mayo in Phoenix. 480-301-8484
 
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Pumpkin

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Here is a link to @PegGar16's thread about her experience with complex infection at the Mayo Clinic in Phoenix.
 
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Layla

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danelady, please give serious thought to contacting the Mayo Clinic. I do hold out hope you can find the right medical professionals to get you through this and put all of it behind you at some point.

Mayo is most often listed as one of the top hospitals. Mayo Clinic Division of Infectious Diseases is one of the largest and most respected practices in the world for diagnosing and treating people with infectious diseases, per online search. Also, in the top hospitals for Orthopedics. So its a win / win! In addition, while likely a couple hrs away, that's not too far to get the help you need to get you back on track once and for all.

You realize you have wormed your way into the hearts of many here, rooting for a happy ending and we don't want you to settle for anything less. So...as difficult as it may be, I think a change will do you good. Hopefully you will give this careful consideration, then pick up the phone and make that call. It can make a big difference in your quality of life in these golden years. No time like the present! @danelady

images
:wink:
 

Elf1

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@danelady you've already gotten some fantastic advice so I'll leave it at that. Do want to say I am so happy that you have popped back up as we were all really worried about you. We understand that sometimes you just don't feel like it or these dislocations and other things get in the way. Please don't stay gone for so long anymore, even if all you do is say Hi. :wave: :friends:
 

Jamie

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@danelady….so sorry it has taken me a while to respond to your latest posts. I’ve had some issues of my own to deal with here lately. I’m so sorry about all you’ve been through lately and wholeheartedly agree that you need to get to the doctors in Phoenix. I’m happy to try and get you in to see Dr. Jimmy Chow or the Mayo Clinic is another good option. In fact, you may want to consult with both just to get some new opinions. I’m here to help you get through whatever administrative stuff you may run into, so just let me know that you’re ready and I’ll see what I can do.
 
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danelady

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Thank you! Thank you! Muah! Muah!
Ok, first things first....I kept thinking I destroyed my phone's port because the charging wires no longer went in so today I planned a trip to town to get a wireless charger. Before I left I learned it would be a lot easier (and cheaper) if I simply stopped rolling over the metal plug with my wheelchair... duh. I had another charging wire in the truck and knew this would take an hour or so. My dog has been depessed lately, never even came in to visit thru the night so while my phone was being coaxed back to life I went outside and hooked hose up to a squiggly water toy that she LOVES!

Second thing second....and please read everything I put up before you chop my head off. It will probably take a couple of posts, especially if I come down with a bad case of that diarrhea going around....diarrhea of the mouth I mean.

I have an appointment to see my surgeon tomorrow but I'm not gonna make it....and I'm not gonna take it either. That building, that parking lot, those rooms... and most especially...a couple of guys there, give me the most toxic, most greasy, most unsanitary feeling in the world. I value truth and honesty more than anything and I don't feel like everything's been on the up and up.....So I'm not going to see my surgeon or his wonderful assistant tomorrow.
I did not call for the ambulance last week because I knew where I'd wind up. A concerned and caring neighbor, not Mike, wanted to help me and I am grateful to the core but now instructions on where to dump my body out in the desert.....JUST KIDDING!!!!! No, but really, got it all planned out.
Ok....continued on next post.
 
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danelady

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Hi 20230517_101653.jpg
To me, the Girdlestone procedure seems like something akin to the Salem witch trials and not a 'forward move'. How nice...he gets the gold star and I get to flop around like a fish out of water for the rest of my life.This dance I've been doing with my surgeon for the past year and a half has had some very low lows but it had the most amazing highs as well. I only met him 5 minutes before he did my first revision on Jan, '22 and it's been a roller coaster ride since, putting me in the untenable position of handing over my broken body to someone I no longer trusted.
I trusted my original hip surgeon immensely and was certain he didn't sit on furniture like us regular folks, he had a jewel-encrusted throne, gifted to him by all the grateful retirees in AZ who finally got that 'quality of life' he pitched out to us all. But right now at this very second, I feel like that poor, dumb, about to be non-existent bird whose fate put it in the path of a 100mph pitch by the Diamondbacks' Big Unit.

I'm sure when Dr Smith heard my surgeon's plan to pass me back to HIM, he probably called a meeting on the mound and said 'we gotta drop her like a hot potato and it's gotta be all her fault!'.

What? Am I being petty, judgemental and a bit harsh? Well, I'm also mad as heck.
For a couple of months he's told me 'I just don't know what else to do'. Now it's 'she's being non-compliant and I can't work with her anymore.' Dr writes it in his reports and who ya gonna believe? However, the most amazing thing is happening, the other staff members see my name and swing by to say hi. It's always the same story...I was sitting when it dislocated. I'm not looking for drugs and I would be happy just to walk across the room again. I tried to find that dr who told me to find a real dr to help me. I never heard the term 'hospitalist' before....learn something new every day. I made a call to COR? I don't even know how I got that number. They are based in Chandler, near Phoenix, I think. First 4 women listened to me, asked and filled stuff out. Lady number 5 said I can get an appointment for next week. For probably the 5th time I told her I have VRE and she said I have to be cured to be able to walk thru their door. Ok, but can't I send my medical reports there and do a face thing? No you can't and we don't do that. Mayo Clinic does not take Advantage. I've started to make out the stitching on that fast ball.


Continues on next post, lol.
 
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danelady

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Hi 20230517_123635.jpg
I enjoyed the visits from this dr even though he usually brought bad news. He always became animated as he passionately described the bacterial war of the worlds in our very own gut, but then I'd start to become fixated on his spinning head, upon which he wore 2 perfectly molded and perfectly placed aural units. I almost complimented their perfection but I was afraid next time he came he'd leave his Dr Skippy persona at home.
 

Jamie

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@danelady ,,,, forgive my ignorance, but what is “COR”? Is this an orthopedic group you are considering consulting in Chandler, AZ? Would it perhaps be the CORE Orthopedics Institute?
 

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