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,

Erica
Erica

5 days out.... Happy New Year!

A  New Year and I cant help but wonder what will it bring? Good things I hope  for myself and for all those around me I care about.   ... As seems to be often the case these days this update has spanned a few days.
I did get out on Sat and apologize for not updating sooner. This has been a harder recovery but I guess what can I really expect with 4 surgeries in 4 weeks and both shunts very difficult to place 1 and 2 weeks ago and both shunts being in new places which means essentially new adjustments as I basically figure out how will healing be and what will just be a long term 'new'? I dont know but always dislike this part!..    ... Thankfully each day does seem to be getting back to a little more normal and as irritating as the TPL shunt is to my back/ribcage it seems to be getting a little less worse.  
Thankfully with all these surgeries and CNS infection apparently that was the cause of the c-spine/head headaches I was getting (totally different than the shunt headaches where) as I havent had one since the shunts where taken out 3 or so weeks ago and maybe even since we had with the 1st of the 4 surgeries externalized the VP shunt at abdomen. Im not sure when they completely went away but it is AWESOME. I remember asking Dr.Bragg and the ID docs if they thought the headaches would go away with the IV antibiotics and shunt removals and they definitely thought it would clear up; so nice!! I do wonder if the symptoms I would get any time we tested the shunt reservoirs or did shunt taps will also completely have gone away and not be a problem any time we have to test either of these in the future? Who knows but I wouldnt be surprised I guess.

Several of the nurses said to me last week as they jokingly have taken to saying I should be earning 'frequent flyer miles' for being on their floor and in the OR so often in the past 1 1/2 yrs that they where trying to count how many time I had been there.. (approx 20 times)  I cant help but wonder will 2013 be better? I dont know and I wont venture to be cocky about my chances but I do know atleast I am happy to have been surrounded by family, such pleasant providers and friends who care and I hope it will be less involved shunt wise.  I'll just cont to live by 'one day at a time' as far as worrying about future medical issues or to be more specific what could or might occur. I can only control now and have to trust that God is in control, which I know he is.

I had emailed Dr.Bragg about specific characteristics of the 2 shunts (ie I knew the brands but didnt know where they fixed or programmable for instance) and she emailed back relatively quickly that the VP shunt is now in the parietal ventricle location (back of head) and the 'valve' she placed is actually more of a one-way system to prevent CSF (the fluid that is drained from around the brain) from backing up the shunt system from the peritoneal cavity and less of a valve as it has no real pressure setting.
The other valve (TPLS) is a PS Medical fixed low pressure valve which basically means both shunts are able to drain a maximum amount of CSF?
Headache wise I have done well (yah!) with only minor headaches in the past 2 mornings but the days other than getting sore around the TPL shunt are better and so many comments about how much 'brighter' my eyes seem. :) I dont have a huge appetite like I have with some previous shunt surgeries but I dont think that means to much as I dont have nausea and have taken 0 anti-nausea med since last week in-patient.

I was talking to my PT today (who I think was blown away by the amount of incisions, swelling (CSF pooling at lumbar incision and in stomach) and all that has occured but also commented how much "brighter" my eyes seemed which is a common sentiment I hear from several of my providers when we have working shunts!  I told him how the neck related headaches went away with the removal of both shunts and treatment w the IV antibiotics and yet how working w him in the months prior had made short lasting benefits in the symptoms. He works alot on lymphatic issues/swelling and commented maybe we where temporarily clearing some of the CNS infection and thats why I would get atleast moderate symptom improvement but then as the lymphatic system 'clogged' up again with infection in-between each Appt I would feel worse again. Interesting but could see it making sense?

I follow up with Infectious Disease on Friday at UW just for labs (not CSF) but have been finished w the IV antibiotics actually since Friday as they decided I had been on them long enough despite the 4th shunt surgery last Weds. Needless I was more than happy to have the Port access taken out! I had gotten ERT on friday in-patient (the Neurosurgery Pharmacist, my Neurosurgery team and Insur Case Man. really go out of their way to make sure the infusion gets done)  so it was decided I would skip this monday (NY Eve) and go back to regular schedule next monday.
Dr.Bragg's NP called me yesterday about starting another round of a one-time antibiotic for a repeat UTI infection (this antibiotic which is hard to get is the only one that can treat it/treat the particular bug and/or IV in-patient antibiotics anti-b's have to be given. We are waiting for my pharmacy to order the med. On friday they will repeat the UA and potentially do another 1 time round of the med. All things considered not the hardest issue.

I see Cardiology next week and think that Appt should be ok, I know numerous times in the hospital the nurses commented how low my BP (blood pressure) would get especially at night - at a couple of times apparently down to something like 70/30 so the Neurosurg Residents had them give bolus of fluid to bring it up but I slept through all of these episodes (amazing actually!) and low BP for me w the cardiac meds I am on seems to work well for the shortness of breath as other than I think when the shunt is trying to drain/absorb in lung now the cardiac symptoms of short of breath (like trying to breathe around an elephant) are pretty non-existant and I have no adverse affects from the low BP such as dizziness or related and feel good on that end.  An Echo is repeated every 6 mo but I cant imagine any suprises or even any med changes. 

Otherwise I have done a little shopping buying a new flat screen TV (yes I was in the dark ages w a old TV, I just never cared to much as I dont watch  a ton of TV) and looking at a new couch as well. I am looking fwd to going home this weekend (for good, I have been going back and forth) to get this stuff set up and to get my new internet (changing providers from US Cellular-wifi hotspot to Charter) early next week.  I also hope soon to be able to try and live-trap the 2 or 3 cats that are still outside my Apt building as I do have someone willing to take them on a farm, so we will see! In the mean time I take care of them and that may take some time.

Will update again sometime soon if or when there is anything to update (with next few appts maybe).
Thanks for stopping by,

Erica