back in the cc hotel!

I'm in remzis office waiting on Vickie as I type. Blood and pain brought me back

so sorry to hear thay danielle. Remzis in surgery all day. Will he see you?

Vickie said I need another EUA but I have yet to find out when

I am so sorry you guys are going through these setbacks. Unfortunately, I agree with you that "returning to the scene of the crime" is just about your only real option. It seems to be the only way to get the attention you need.

Liz, I'm especially sorry that a hospital admit did not improve things. I can only assume things would be even worse if you had tried to stick it out longer at home. Once you are on the mend I suppose you need to address the lack of communication by your providers after you became an outpatient. Patient complaints do make a difference, and I was encouraged by the advocate to file formal grievances when I had various issues. I received written replies (not just form letters), and follow up letters, once solutions were figured out. These were changes in how scheduling and staffing were managed, not just something specific to me.

It is only when enough complaints are filed that changes are made.

But for now, concentrate on YOU!

Take care,

Jan

I'm joining the hotel too

quote:

Fortunately the nurses are treating me like a queen as many remember me

Well at least this is a positive.

This is one hotel I hope I never get to stay at. This thread has me thinking of that Eagles song "Hotel California", i.e., "you can check out any time you like, but you can never leave." I hope you can do both soon.

Hey danielle i think my roomie is going home today. Maybe you can be my new roomie as long as u dont watch tv all night on high volume like my current roomie.
Serious though.. pm me when you get a bed. And if i am able i will come visit.

Too bad you are BOTH back in the hospital but it's good you have each other to commensurate with. Please keep us up to date on your conditions. This is just not right.

The medical personnel, in the hospital ward I always go to, were voted the best hospital ward in the metro area a few years ago. They were the best staff I'd ever had for a hospital visit. I told them whatever they were paid was not enough!

TE it stinks but it's neat we will actually get to meet each other!

Thanks josh. I really needed that.

Somehow they lost me in the computers yesterday so my "add on" eua surgery didnt get done. Ridiculous. So another day on npo and dry heaving from iv antibotics while i wait for an eua again today.

What Jan says!

Liz - hope the EUA goes well - will Shen be there this time around as well? Looking forward to hearing the results.

Danielle, I hope your EUA is a success and that your pain is relieved as well.

We are all pulling for you!

Thank you all for the words, means a lot to me!

Liz11- I'm going for my EUA supposedly 10:50 do you know when you are?

Too bad they FORGOT you. I hate taking antibiotics on an empty stomach. What good do they cause if you're just going to barf them up?

I hope by now you are in the procedure.

Prayers for you both. xxxx

Liz and Danielle,
I am saying prayers for you both. I got goose bumps when reading what you have been through. The great thing is you couldn't be in a better place. Know that we all sending you our best wishes and thoughts. I wish I could help in some way.

Clouseau thank you that means a whole lot to me!

Liz, what's the word? Did you get your EUA/results? How are you feeling at this point?

well well... what a week. I got outta there yesterday, barely. Very weak. puked for four days and nights straight on iv antibiotics then I forced myself to go without iv narcotics for one night so I could get released. Tummy is getting better since getting home and off the iv antibiotics, so pretty soon I will try swallowing a pain pill.

anyways.. day before the eua remzi came in a presented two directions to go... both which pretty much stank.. and left me balled up in a corner crying and puking most of the night. He was suggesting after fixing the immediate problem that we leave the wound alone and I try to tolerate leakage, and pain, and go to pain management for the rest of my life. That is just against my personal principals. Other option was the flap repair.. which he didn't express a lot of confidence in because the wound already wasn't healing. Also could keep trying shen's approach, but again I was the only patient that had ever been tried on anywhere ever. He obviously was bothered by the status of this situation and disturbed that it was almost one year and this wound was still a problem that wasn't getting solved.

In the interim.. they had gathered quite the team to discuss me "rarest of rarest of rarest" - as remzi says - chronic wound issue. I think it finally occurred to remzi how I have been suffering the last year and he realized "enough was enough" Added an infectious disease doc and plastic surgeon to the remzi and shen mix.

After the EUA.. Remzi came in dressed all smart strutting with confidence like I hadn't seen him when discussing my case in the last 10months. He said the current problems were caused by a massive hemataoma from the last EUA and blood clots and debris.. GROSS. whatever.. but pain was greatly dimished after the EUA. He also had brought in a plastic surgeon for a "look and see" at the EUA.

so then he say.. "I have a plan" like the bold strong remzi he is. Not like the remzi I saw the day earlier. He said between all the docs, including the infectious disease doc, they believe that some kind of leftover infectious tissue-something to do with epithelial layer..I'll have to read more.. is preventing any of the healing.. despite the continual I&Ds. So the plan is to go in.. to a major major cutting of the wound, making it much larger, getting rid of the epithelial whatever, then have the plastic surgeon do the flap repair. He was so confident. It was unbelievabale.

He said I could choose to continue to try shen's method first for 3-6 months if I wanted, or that we could jump in and to this right away and get things DONE.

So he wants me to meet with himself, remzi, and the plastic surgeon in 2weeks... to discuss everything. (There goes my afternoon fighting with CC trying to get those appointments to happen!) So my hubby and I are absolutely beyond ourselves that finally there seems to be plan that might put this all behind me. BUT I am very very scared about this whole flap repair thing. This will be a another big and scary surgery. And I don't even know anything about where they will take the flap from until I meet the plastic surgeon.

Anyways.. thats the story!
resting at home, very weak now, trying to slowly eat. Got in some early weight loss for spring! So very fortunate that I am at CC. That Remzi is my doc. And they can pull a team of wizards together to figure out my complicated messy case. I am so thankful for that.

But I wouldn't advise anyone to have 2operations, one MRI, 2 ER visits, and a 5 day hospital stay in a 1.5week period.

Wow, Liz, that is a lot to take in, I'm sure.

I believe when Dr. Remzi talked about an epithelial layer preventing healing, he was referring to the sinus tract. Sinuses and fistulas are distinct from just a deep, draining wound, by the epithelial tissue that lines them. This is like skin, sort of like the body's attempt to separate this opening from the body cavity. But, the result is that the body perceives it as part of the normal body structure, and not as something that needs to "heal." This is why fistulas and sinuses are notorious for being persistent, and resistant to treatment.

Having the hematoma in there basically created a source of infection, not to mention causing pressure and pain in there. So, it must have been a huge relief to get that cleared out.

It sounds like Dr. Remzi's plan is a good one, even though it seems drastic. All this putzing around for over a year has gotten you nowhere. How many more of those EUAs could you endure? I can see why you are fearful of the flap procedure, and the potential for new complications too. The next two weeks will be anxiety provoking, to be sure. Nothing worse than waiting to find out the details, while your imagination runs amok!

In the meantime, I hope your pain settles down so you can rest up, think clearly, and get ready for the next step.

Oh, and congrats on getting back home into your own bed!

Jan

thanks jan. Actually they are talking about the wound itself being the problem with the epithelial whatever. He believes it is because it all started with a huge hematoma and then abscesses in the original surgery a year ago. I don't fully understand it. I was pretty drugged up when the infectious disease doc tried explaining his idea the previous day. But somehow I understand that he will be opening up the wound which I think right now is about 2"diameter into something much much larger. You can only imagine the visuals in my mind of the chunk of flap whatever that will fill that and where that is coming from!!!

and best of day yet. I called the office.. and my appts with all the wizards were already in. Except they had me meeting with his remzis nurse and not him. After a little voice raising and mini temper tantrum that was quickly fixed!

Hematomas prevent healing because they keep the space open and provide a source of infection. Basically like setting up a petri dish in there. Once the wound has been kept open long enough, it epithelializes, and the body begins to recognize it as just another organ. So, the idea is to do a major dibridement, clearing out all tissue that is part of this mess and widening the wound so much that it cannot epithelialize. The flap procedure fills the space with transplanted muscle tissue, with the idea that it will prevent infection by eliminating the cavity. Like you, my mind would be focusing on where they would harvest the muscle from, and would the gracialis muscle be big enough. I saw an article about using a gluteal flap, but it seemed even more invasive.

I am sure it is no fun or great honor to be "one for the medical books!" be sure to come back and rant all you want here.

Jan

thx jan, that makes more sense.
Did I mention that I'm a tiny little petite thing. See where my brain is going with this....
I just must turn it all off until I meet the plastic surgeon dude. Briefly read his profile and he does face lifts, breast surgery, body sculpting, and tummy tucks...... ummmmm...don't really see how cutting large chunks out of legs or butt muscles to stuff far up into butt wounds fits into that category?

I agree. No point making yourself crazy with what-if scenarios, when you don't have all the information. So, the challenge will be distracting yourself with other things in the intervening weeks. Maybe cooking up some nice casseroles and soups to stock your freezer, so you can come home to home-cooked meals after the next surgery? Of course, right now you probably just want to hibernate!

Jan

Liz I think it sounds encouraging. If a plastic surgeon does a good job on all of those precise surgeries he is more than capable of handling your procedure. I believe that is why they are bringing him in. This is one for the textbooks and they want a successful outcome!

My father has been battling infections for over 10 years and has undergone at least 9 procedures, we think could be more, in the same wound area. He had 3 the summer/fall of 2009 at the University Hospitals. Each time they clean out/cut remove whatever all of the infection and take the surrounding tissue in hopes of getting it all. His problem is the infection is running through his entire body and a big reason is he can't take most of the antibiotics the infectious doctors need to use to kill the infection each time it morphs into something else. He is allergic to many things, not just medications. Long story to say I think it sounds like a good idea, but I'm an accountant not a medical professional!

Plus you don't want a hole in your rear and since the guy/gal is such a good plastics person the place it is removed from will be looking the best possible plus you will have a cute butt.

I make light, but know this is really serious. I don't know where else in the world you could go to find a better dream team. Please take it easy on yourself the next 2 weeks and smell the roses.

te thanks so much for the encouragement. Thing is.... I already have a cute butt!!! (see the wound is way up inside by my tailbone.. so no real signs of it outside) But I think they will be taking a chunk from my cute butt or my inner thigh. don't know yet. And I also have nice muscular legs. Both of my best features. So very concerned about disfigurement.. but even more so.. loss of function.. as prior to this whole ordeal I was very physically active - running, swimming, yoga, biking, and more.

I too have problems with antibiotics. Can't take most for many reasons, hence infectious disease is now on my case.

And jan... dead on about those casseroles - been doing that for the last year before all these euas and hubby traveling for work.

TE you are right. I truly have a dream team. And I guess if you are good at making a new boob then maybe you are good at filling a huge wound cavity way up the butt! And I do know... remzi would only be working with someone he wanted there and trusted. So I am extremely fortunate that all of these wonderful doctors are on my team.

Maybe I should consider a face lift while I'm under!

I am happy that you got answers! And no need for a facelift!! Your face is beautiful as it is!

danielle... you are so sweet!!!!!!!!!!! hope you are doing better now that you are at home!

Thank you but it's the truth! Doing well slept with no one poking me, or taking vitals or god bless her but a snoring mother! Just woke up with my arm hurting ba but 2 infiltration will do that to you! And I'm pretty bruised but happy to be home

WOW! Both Liz and Danielle - so sorry things have been so difficult. I send healing thoughts for both of you that you have speedy, strong care and recoveries.

Kta- thank you! I greatly appreciate that. I'm slowly recovering. But like my last post my arms hurt from 2 infiltrations

I disappeared from the board for awhile. I have to say Danielle, I really hoped that things would be better for you . And Liz...just wow.

I hope things get better for you two.

Thanks me too! I'm still fighting pain. And fighting getting pain meds but I guess that's what happens. It's frustrating. Bc I know what the doctors said and when I call in I get questioned by the nurse pract. So frustrating!