Shunt good, infection bad..

The theme of the day appears to be 'keep your friends close and your doctors closer"

Well Lisa from my neurosurgeons office (she is Dr.Bragg's nurse) called this morning - it's never hard to figure out when it isnt going to be great news but she just said we have some somewhat bad news for you. Ironically she was like I barely got done sending you an email about how happy I am your doing well with this shunt revision and Dr.Bragg walks in looking like she's about to cry. Apparently my shunt tap from last week which was testing CSF fluid grew back a bug which means the VP and the LP shunts are infected. This is never a good thing. Initially they though i'd have to come in tomorrow  for 4-5 days of IV antibiotics and then remove the 2 shunts on fri and replace the VP shunt. ( The LP shunt is tied off so not necessary we just had left it in in case we ever went back to that type of shunt gviven how difficult it was to place in my lumbar spine). We talked for a little longer and Lisa was also talking to either Dr.Bragg or one of the NPs in the background and they thought maybe we could do the IV antiobiotics at home since I have a Port but we'd need to get a home health company to do the set-up and could have likely left my Port accessed from todays infusion. Then because im supposed to go to Philadelphia this week she called me back and said they thought maybe we could do a strong oral antibiotic and Dr.Bragg paged and spoke with the infectious disease doc. They recommended a med that is used in antibiotic resistant infections and pretty powerful but thought it was fine I did it at home as long as the antibiotic was continued until surgery was done to take out and replace the shunt(s).  Because this med (zyvox) is used in such specialized populations it requires a prior auth and infectious disease referral so the rest of the afternoon was spent figuring out the PA and Dr.Bragg's nurse working out the issues. We also had to figure out when the LP and VP shunt surgery would happen which we could have done next tue but Dr.Bragg was concerned I might not bounce back for thanksgiving especially given so many other recent surgeries and this will be more than 1 shunt - many incisions.) I didnt really want to risk it knowing how I usually take a few days to bounce back and so we decided on the 1st week in Dec (Dr.Bragg will be gone the week after thanksgiving) and i'll take the oral antibiotic (zyvox) till then. Because the medication is so costly my primary insurance pharmacy benefits management company did not want to approve the med but Dr.Bragg's NP is married to one of the UW Pharmacists and he + Lisa kept on them and because they had the infectious disease medication referral they needed for the drug pre-auth - they told navitus if they didnt approve the oral med (About $5000) they where going to admit me in-patient for IV antibiotics which of course would cost far more than this. Apparently almost immediately Navitus reversed their decision and approved the med.  I liteally think I talked to Lisa no less than 6-8 times today.  Because  I have to pick the med up from UW tomorrow  also had to call and cancel/reschedule two appts I had in milw tomorrow as well as schedule a pre-op physical and call the study coord at CHOP to make sure things where fine for later this week. I also called my insurance company and secondary pharmacy benefit as well as insurance case manager a couple times. All this took place during and after ERT infusion. A little nutty! Lisa said to me on one of the later conversations something about my being so calm through all this and she thought it amazing that I just have 'the gift of calmness' when everything seems to be crazy in my life - what with all these on-going shunt issues and also all the other medcal issues I deal with and have going on on top of trying to balance a 'normal' life. I often dont feel to calm when in my head im furiously going through who I need to call for what and making sure I dont forget to either be somewhere im supposed to or in cases like this reschedule those appts I need to because of things that come up. It's nice that apparently I appear calm to other providers though and nice that some appreciate how complicated it is and how stressful it really is even if I keep a cool front. Like I said to Lisa it's not hers or Dr.Bragg's fault really that the shunt is infected - it happens and though I dont like it and hate that it means more surgery and means rescheduling everything tomorrow I certainly am not going to take it out on them. I truly think Lisa felt as bad about this if not worse and I can appreciate how hard it has to be on them to have a patient they struggle to help and get answers to and then when you just get done exchanging happy emails about how good things are finally going the crap hits the fan again so to speak. I just told her I couldnt hardly get upset at her or Dr.Bragg since they have done so much to help me and have been so sweet but that I would admit I probably wouldnt be that calm headed/collected if it was a particular provider of mine whom I dont get along with well and whom I do clash with. It's much nicer to be nice to people who want to help you and are dedicated vs people who are just in it for personal gain or the money or whatever their motive is beyond helping patients!

So that is the scoop on the latest go round with these shunts - flippin ironic that it has to be an infection in the one that finally seems to help atleast a great deal better and seemed like we may have finally hit a good answer. What are yah going to do though, right?
If I think of anything ive forgotten i'll go back and re-edit this.
God Bless - Take care,

Erica