Infection is back - I am weary

[Cheryl R]

Kathy, I hope you got my PM.        I did ask my one nurse friend about her take on this and she did say to take acidophillus pills for boosting the immune system and garlic pills for against infection.        This is up to you and feel welcome to ask your dr if interested.
I have not had a chance to talk to my wound clinic friend.         
            I wish you well and over this for good soon!                 Cheryl R

[Kathy M]

How can I thank you all for responding to my post - my family all headed back to Kentucky and I couldn't believe 16 posts from you were waiting....I am so lucky to have such a wonderful group of people to count on.  The family weekend was just what I needed and now it's time to get ready for work, try to remain in a relatively good space until I hear something about the biopsy on Tuesday morning.  I should also hear from the neurosurgeon's office on Monday to tell me if I need to switch antibiotics or stay the course with what I'm on.

As soon as I hit "send", I'm going to begin studying all of the wonderful suggestions you have sent me.  Truly I can't thank you enough for always being there.  I'll keep you posted.  Til then, much love as always, and enjoy the season.

....and Steve, you made me laugh out loud - how nice of you to take the blame!!!    You are the very first person to do that!!!

Kathy

[lori67]

Well, I was going to say it was all Steve's fault, but I didn't want to point fingers or anything....

Lori

[leapyrtwins]

Speaking of Steve, just where are you on his hat list, Kathy 

The weather is getting colder.  You need something nice and warm to put on your head 

Jan

[TP]

Kathy, first off I am so sorry you are going thru all of this stuff. I had three surgeries (AN removal, two csf leaks and a couple of eye surgeries), had mennigitis, pic line and a lumbar drain. When I got mennigitis they brought in a Disease Control Dr. Do you have one that you are working with for this latest infection? Also, have they said if you have Myrsa? Do you currently have a fever? 

[Kathy M]

I have no idea where on the hat list I am....I've never requested one  - just enjoyed watching all of you guys modeling yours and getting very jealous!!  Purple is my favorite color, by the way!!!

And, I'm headed out tonight in search of acidophillus and Colloidal sliver.  Coincidentally, last spring, Dr. Pensak (my neurotologist) presribed something in an ointment form that accelerated healing because during a routine visit post op #1, he said it looked too pink for his liking.  He said that this was used also by burn patients.  It started with the word "silver" but I don't remember the rest...hmmmmm....

I contacted the Ohio State University Medical Center this morning in search of a dept with specialty in recurring staph infections.  They sent me to the Infectious Disease dept and they are contacting my peeps in Cincinnati for referral information.  The nice woman on the phone says it will be 4-5 weeks for an appt, so in the meantime, I'll keep on researching and working with my neurosurgeon, and alternative remedies.  However, I will not agree to another surgery without some additional opinions.  I am really beginning to feel lousy (no fever), and this nastiness on my head is getting nastier and nastier - words can not describe my frustration!!!

I'll keep you all posted!!!  I love each and every one of you!!!

Kathy

[cyrmom2]

Hey Kathy. 
Just finished reading about your recurring staph infection.  I am so sorry that your are still dealing with this.  Hopefully one of the specialists at OSU will be able to help.  If you need a lunch buddy while you are in Columbus let me know.  I'd be happy to keep you company while you wait for your appointment.

Cyndi

[leapyrtwins]

Kathy -

there is a Rx ointment called Silvadene (maybe not the right spelling) that's for burns.  Maybe that's what you are referring to.

I think you'd look very nice in a purple knit hat - are you listening Santa (or Steve)?  One of the great things about the hat list is that the only one who knows the next recipient is Steve.  I'm not sure that many of us asked for our name to be put on the list - we were just fortunate enough to be gifted with a hat.  Kind of like we were all "gifted" with an AN - only the hats are a MUCH BETTER gift 

Jan

[notnowkato]

Dear Kathy,

I just wanted to say how sorry I am you are having to deal with the Staph infection, and that I think you are on the right track contacting an infectious disease specialist (and possibly looking for a wound care clinic). I have worked directly with infectious disease clinicians in the past and they are specialists in their own field as much as neurosurgeons are in theirs and have experience dealing with these persistent infections which can take a long time to clear. I am sure that the ones at OSU Med Center will have access to the most up-to-date knowledge about treating recurrent infections and are probably even better placed than your neurotologist to suggest how to finish this infection off once and for all! Do you know if it is Staph alone causing the infection or has something else nasty got in there too?

The UK published guidelines last year on the treatment & prevention of surgical site infections: http://guidance.nice.org.uk/CG74/Guidance/pdf/English
Section 7 summarises the evidence for different topical ointments, impregnated dressings and cleansing routines. As is often the case, there doesn't seem to be much conclusive in there but it does cites the scientific references for some of these treatments if you wanted to follow them up and see what they say.

Good luck with your search and I hope you get a purple party hat in your Christmas cracker,
Kate

[Kathy M]

OK...this is the first time I'm typing these words, so I want to try them out with you....   I have breast cancer.  Wow, that is hard to see with my picture attached to it.

Yesterday was a whirlwind - lots of discussions with a surgeon, radiologist, oncologist, clinical nurse, breast cancer patient navigator.  Today, we see a radiation specialist.  I have to leave for that appt in just a moment so I'll update more later....just wanted to get used to saying this in a very safe environment among friends.  They said I caught it early and that I'm very lucky.  Good to hear, but after this year, "lucky" just doesn't seem like the right word.

Today, since I have breast cancer, the docs at OSU have moved up my appt to this afternoon to check out this infamous head of mine.  I'm also going to be dropping off my records at the James Cancer Center/OSU for a 2nd opinion.  All my doctors down here in my hometown urge haste, so I'm listening!!!

Gotta run...more later. 

Kathy

[lori67]

Oh, Kathy... that's not what I wanted to read.

It does seem odd to say you're lucky, but catching cancer early is lucky.  So many people who have caught theirs early have been cancer free for many years after treatment (my mom is going on 10 years) and I know there are many cancer survivors on the forum too who will be able to offer you words of wisdom and support.

Know that I'm praying for you and hoping that this is the LAST bump in a very long road for you.  No more bumps!  You will stay healthy!!!!     (that's me - mad at cancer, infections, AN's etc.).

As Mother Teresa once said "God never gives me more than I can handle.  I just wish He didn't trust me so much."  We all trust you and know you can show your body who's boss!

Good luck at your doctor's appointment.  I'll be thinking about you.
Lori

[leapyrtwins]

Kathy -

I'm at a loss for words    You've been through so much.  

But, I know that you're a fighter and you WILL beat this.  As Lori said, we have quite a few cancer survivors on the forum and along with the rest of us, they'll be sure to offer you words of wisdom and support.  We're all here for you - in whatever capacity you need - don't hesitate to lean on us.

Prayers,

Jan    

[pjb]

I am so sorry to hear that it was breast cancer but as they said they caught it early that is good so many success stories as long as the cancer is found early.. you definitely do not need this with all of your other problems.  But you sound like such a strong person and I just feel in my heart that you will get through this and you have your family at the AN forum to talk whenever you need to.

My extra prayers will be with you,

Pat

[Kaybo]

Kathy~

Oh my!  As Lori said, I too am at a loss for words (& I don't think that happens often to us!)...the 1st thing that comes to mind is something that I don't say too often, but here goes:  THAT JUST SUCKS!  Please know that we are here for you to do whatever you need and be your support.  I have a free airline ticket if you need a shoulder in person!  You WILL get through all of this and on the bright side, you get to find out & hopefully end that ever increasing head yuck sooner...

K 

[wendysig]

Kathy,

To say that I too am at a loss for words at hearing this latest piece of news is an understatement.     You have already been through so much and this infection that just won't go away is more than enough for you to handle.  I'm glad to hear that you and your docs are on top of things and also that it was caught early.  You just went to the top of the list in my prayers -- please keep us posted -- you know we are all praying for you.

Sending you hugs to comfort you (((((((((())))))))
Wendy