Thursday, January 10, 2013

Infectious Disease, Cardiology-valve changes, Incisions..

It's been a somewhat busy few days with being back at my Apt and back to normal routine. Last Friday I saw Infectious disease and Beth asked that I call her with  any new UTI symptoms or any new symptoms of headaches ie if I am seeing Dr.Bragg bc of symptoms she wants to know.
She was sending her note to my PCP and to my Neurosurgeon and going to flag my file so an antibiotic will/should be automatically given that is susceptible to the particular UTI bug I keep getting anytime surgery is done either at UW or elsewhere. Otherwise antibiotics are always given for the actual surgeries but a different class and the particular ones given are to prevent different issues. This particular UTI bug is susceptible to only one class of drugs and resistant to the rest of the drugs they've tested so we hope it works and at some point may have to switch to treating the UTIs via IV which is the only other way the a susceptible antibiotic works other than the oral we have currently been using for the past few times. The bug that was in hte CNS isnt as antibiotic resistant but a common bug we all carry on our skin.

She also said she would recommend in her note and to Dr.Bragg to tap the shunt and test CSF sooner if having symptoms. If I understood her right she suspects apparently that this bug could come back due to its long(er) standing nature in my CSF this time but to try and avoid this whole mess she would recommend tapping sooner to catch any potential issue sooner. For now the blood level tests she ran where perfect and CSF was testing completely negative so I personally am not worried.

The other thing she added was that she would like  to stay involved for all future shunt issues (if sny) and be consulted on in-patient Neurosurgeries. It really wasnt to big of an appt.

I Saw Cardiology today (Tues) and a little surreal actually.. I went in not thinking to much of the appt,  just another 6 months gone by, another Echo and another Fup appt and in fact in my last blog I think  I commented I actually thought it would go well..  Apparently not, which is ironic bc on the new beta blocker dose and increased lasix dose over the past few months ive actually felt better breathing wise than I had in years.  
Apparently the pressure gradients (blood flow from the valves?) is increased again and now in the severe range for the aortic stenosis (narrowing, meaning not enough oxygenated blood gets through I think) and the I think but cannot remember for sure that he said the aortic leaking is in the moderate range (an issue he is less worried about) and the mitral stenosis is squarely in the moderate range now w leaking also moderate but that I also cannot remember. He was genuinely concerned we will be facing valve replacements soon maybe as soon as this next eval in 6 months as he said he may have recommended it sooner but with the recent CNS infection the soonest he would send me to a Cardiothoracic surgeon was once I was infection free for 6 months due to the CNS shunt infection as he wants any systemic infections cleared for atleast 6 months unless more symptoms present and then he would still want 3 clear months. The heart muscle itself is handling this valve changes pretty well he said; I think before the L side was severely enlarged but as a whole the heart is holding up well.  He said that with any shunt surgeries or other surgeries fluid would have to be managed carefully and blood pressure watched carefully (due to being so low already) and with any slight change in symptoms he wants me back in to see him  right away as he seems to think this will change again quickly symptom wise (I guess).
He was concerned about the shunt infections I just got over but didnt think those where the cause of these cardiac changes (stress on the body I suppose) and more just making sure any infection like that even though neither of the shunts go in to the heart would spread to the heart (less likely as 2 different systems ie blood stream and cerebral spinal fluid but apparently not impossible).
He was going to send his dictated note to my Neurosurgeon (Anesthesia uses these as well for their planning), PCP and Pain Mngmt dr so they are aware and know these newest changes and concerns.
As far as where would we do any valve replacement and what would we do - his hospital is nationally recognized for Congenital heart disease and has a great Adult Congenital Heart program with a surgeon that has done probably hundreds of heart valves is my guess but even Dr.Earing has yet to bring up his own hospital and broached a possible private heart hospital in Minneapolis (not Mayo which is where he trained) as well as we'd have to do some homework to see who if anyone has the most experience with valve replacements in MPS I Adults. Up to this point he has always discussed mechanical valve replacements despite needing long term medication (Coumadin) management on this as bovine (animal) valves have been shown to re-stenose and build up with GAG storage in seemingly short periods of time (years but not many?).
His big concern was between now and any surgery as well as he thinks the surgery itself and post-op would be extremely difficult due to the underlying MPS diagnosis and secondary shunt, breathing/lung issues and autonomic issues and quote "it wouldnt be pretty but we'd get you through it".   That is a surgery that scares the be-jeezus out of me due to the fact of cracking your chest;  I could barely think about where my Thoracic to Pleural shunt is knowing they moved the muscle alongside or near my ribs and feeling that valve move when id move many ways I cant imagine cardiac surgery. For now I think i'll just chose denial and chose to not tihnk about it to much!?!

My Pain Mngmt dr called my cell which I missed her call and so then emailed me an invitation to a discussion/meeting she is hosting alongside a DEA Represenative and other Pain Mngmt people about Pain Mngmt prescribing and use in today's environment. She asked if I would attend and participate in the discussion. That is Jan 29th and looks pretty interesting, it's an area I still have an interest in despite APF having closed so will probably attend. I do have my sunday school monthly meeting that same night and missed last month's due to being in the hospital + actually find these meetings really interesting but my co-teacher has said she would take notes for me.

Otherwise feeling decent; have been pretty tired yesterday and today but I think (hopefully) that is more from sleep and alot going on this week + just need to catch up. :)
I saw Dr.Bragg's NP this morning as Dr.Bragg wanted the incisions looked at and so Sue took out some of the many sutures (most are dissolvable but a few where removable) and in total there are 10 different incisions from the 4 different surgeries in Dec. - holy s**t! Thankfully discomfort/healing wise the only uncomfortable ones are where the valve sits in my mid-back and that is still far improved and my stomach I think isnt loving even just one shunt draining in to it. Could be worse!

Thanks for stopping by,


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