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Knee Infection* The girl with the two fake knees

It appears that it's about a 40 minute drive for you to go to the University Hospital at Rochester, NY. This hospital has an entire department dedicated to infectious diseases and research of them. This is where you need to be, Jen. Even if you don't go there for treatment, at least go for a consultation and some testing. Check with your COBRA to see if the doctors in that hospital complex are covered. This is honestly a better option and gives you the best chance for success.
 
Of course, Jamie is on target. My ID group is with the University of Pittsburgh Medical Center. You definitely want someone who has dealt with this before and having an entire group or department behind them is even better. I have my ID but I know there's a whole team behind her.
 
Glad your willing to look into infectious disease specialist, I had a wound care dr. Wonder if there is a difference. Mine was very good and did all that culture testing, Inflammation markers and such. Also had the knowledge of what type of medication would clear up my infection.
I feel for you, you've went thru a lot this week, I hope you can get everything in order before the weekend. I had read up on the info Josephine left you and to me any infection isn't good, I know somethings out there are worse than others, but I guess I just don't know enough about that part of the process. Continuing to follow your postings. Praying for continued strength to get thru this trying time in your life.
Continue to see lots of helpful information and knowledge of these things being passed on from other forum members.
 
@fuzzybunny

I had my surgery at United Memorial Medical Center in Batavia, NY. My OS is Dr. Matthew Landfried. He and his practice are great!!

I have COBRA through my previous employment at Rochester Regional Health. It's a huge organization with a ton of doctors. I contacted my visiting nurse and she gave me the name of Dr. Anja Bottler at Unity Health System (they merged with RRH and the outpatient clinic I worked at was Unity.) I will call her office tomorrow and make an appointment, and get a referral from my OS, if it's even needed. I'm lucky that my insurance is great. So far, I've incurred no new bills resulting from the infection because it's all coded as follow-up. I'll also call my PCP (primary care physician) and get an appt there too.

I am in no way reluctant to get care from a large city. I guess I'm just not fully aware of what this Proteus is capable of. Is it any worse than say MRSA or Staph? The reading above was good, but I still have a bunch of questions for the doctor. I also am not driving yet, and I hate to put my parents out (even though they don't feel this way and they are happy to help with anything). I have been getting over it recently though. The more I do read, it makes me sound like a filthy person since it says it is related to fecal matter, dirty water, and soil. I wonder if there is any link between this and the accidents (urine) I've had after the last 3 surgeries. Nothing ever got in the incision, so I'm perplexed. And I'm a very clean person, just for the record!!

So, I will be making phone calls tomorrow. There are 2 or 3 ID specialists at Unity, so I may have a decent chance of getting in soon. I hope they have a quick turn around since time is usually of the essence with infections!

Thank you for the suggestions and feedback. I'm glad you have my interests at heart!!

Jen
 
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This sounds like a good plan, Jen. I did find this doctor listed out of Rochester, NY and infections are her specialty. When you call the office, be sure and advise them that you have been diagnosed with a Gram-Negative Bacilli infection. Ask if the doctor has worked with that type of infection before. It is a bit rare and can be more serious than staph or MRSA. If there is any delay at all, it wouldn't hurt to check with the University Medical Center too. They might have an opening sooner. Good luck and please let us know how things go.
 
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ACDCJen said:
The more I do read, it makes me sound like a filthy person since it says it is related to fecal matter, dirty water, and soil. I wonder if there is any link between this and the accidents (urine) I've had after the last 3 surgeries. Nothing ever got in the incision, so I'm perplexed. And I'm a very clean person, just for the record!!
Click to expand...

Jen, please don't beat yourself up about this. Bugs lurk everywhere. A lot of them live happily on our body without causing any harm - commensals r us and all that. Bugs in the wrong place can cause harm; they just need an opportunity. You know all this anyway. Yours could have been picked up anywhere from anyone so don't be hard on yourself. Your job now is to work with the team around you and clobber that proteus - you've got a kayak to get into and a summer to look forward to!

Hand washing, the single most effective means of reducing cross infection. Don't be afraid to insist that anyone who comes anywhere near your wound (or you!) washes and dries their hands before, during, after - always! There endeth my pet nag!

Keep on keeping on, girl - you're doing good. Part of the fight is knowing your foe and you've got that nailed.
 
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Jen, I felt the same way with my infection. I was afraid people would think I was dirty or didn't take care of myself, when nothing could be further from the truth.

My ID said exactly what Cratchit said, wash your hands, wash your hands, then wash again. When I was in the transition unit after the infection surgery I watched people like a hawk and everyone washed their hands upon entering my room.

I'll be waiting to hear when the ID can see you. Hopefully when they hear the details of your infection she'll be able to see you immediately.
 
Well, I got the ball rolling. I called Dr. Bottler's office (and they were very nice!). They said to have my OS fax over my lab reports, med list, tests, and surgery reports. As soon as they have that, they will schedule an appt, within just a few days. So, I called my OS's office and left a message for the nurse. She will most likely follow up with me today or just send the information over. I know I'll have to wait at least through the weekend, but that is ok for now. I will most likely have an ID appt next week.

Disappointingly enough (or maybe not), my PCP's nurse said they are getting my reports and there wasn't a pressing need to get in. I'm ok with that for now, because there is really nothing I need from her.

So, the wheels are in motion. I have an OS appt on Tuesday, in the morning, and I can grease the wheels then, if I even have to. Plus, I can call on Monday to follow up.

I feel better having done all this. Time for a shower!!!!

Thank you for your gentle nudging...I used to commute to Rochester for work, so it's close enough.

Jen
 
I'm so glad that you're going ahead and pursuing the correct doctor for your infection. And I agree with @Cratchit that this infection could have been picked up anywhere from anybody. Also, you had three surgeries in 2016 and your body hasn't had the time to recoup from them, so your resistance was and is low. You are on the right road now! Prayers are with you!
 
Just heard from my OS office. They are just waiting for the PA to sign off on sending the information. It sounds like it could even be sent today!! So glad this is moving quickly. And my OS's office said they refer to Dr. Bottler often and she is excellent.

Yay!
Jen
 
Glad to hear your referral, and records are on the way. I saw an ID for the superficial infection I had on my other leg after a skin cancer excision. I learned a lot more from the ID than from the Dr. about how to treat my infection.
Take care,
 
Well done! I am happy that your surgery went well and is behind you. You were so right to pursue a new life with new working knees! You are way too young to live with the disability of non-working knees. Keep a positive attitude and set realistic expectations for your recovery.
 
Jen, I have been lurking in the sidelines and following your story. You are an amazing person and so strong to have such a positive attitude about this. You are the type of person for whom I have immense respect - because I'm not sure I could have anything but a big pity party, myself!

Anyhow, please don't think you are dirty in any way.... I found this article broken link removed: https://web.uconn.edu/mcbstaff/graf/Student%20presentations/Proteus/Proteus.html which says proteus is a part of ALL of our normal bacteria flora. Apparently it also exists free form in water and soil. Personally, this little guy could have come *literally* from anywhere. And like someone said, you've had quite a few surgeries, so your normal flora balance and immune system might also have been suppressed. Fear not, strong woman! No one will think negatively of you!

So proud of you going through the wound vac melee and for getting a confirmatory opinion from an ID doc. Keep up the strong spirit. You are an inspiration to many of us (*especially* since you watch your wound sponge changes! I would pass out:swoon:)

Godspeed!
 
My appointment is Wednesday, January 25 at 11am with Dr. Bottler for infection specialization. Today showed me just how great my OS and his staff are for working so quickly. And my "new" doctor too!! Now, I just have to wait until then. I see a PA on Tuesday.

I'm....happy? Unless that makes me weird, then I'm just nervous. :)

Jen
 
Happy you have an appointment next week. Wish you could have gotten in soon, but at least you are going to be seen.
 
I am also happy, that you have take the first steps to get an ID involved in your case. Jen, most Proteus infections are transmitted in the hospital. It could have been something dirty in the operating room or in your room at the hospital. That is where most infections are contracted and why many doctors rush you out of the hospital to get you home. Did you have a catheter? Sometimes they are linked to infections.

At any rate, I am sure that no one at all will think that you are unclean in any respect. You most likely did not cause this infection---I think its source lies within the hospital.
 
Jen that wound is improving quick, you might get lucky and close up in 8 weeks. I had a 6" long incision diamond shaped on my shin. About 1" wide and it took 8 weeks. I ended up changing my sponge & plastic layers myself. Understaffed home health agency, only worked 9-5. I was working and could not afford to stay off.

Don't think to hard on how the bacteria entered your incision. We all visit public bathrooms and easily track pathogens into our life.

Going the next steps will give you some assurance that things will get better.
 
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