Happy Thanksgiving...Restarting (oral) blood thinner, various

  A bit late but Happy Thanksgiving! I will admit I've struggled a bit this holiday season to get excited for the Holidays (I am looking fwd to some parts just struggling with other things) but no less I am grateful for all I have and all who are part of my life.

Things con't to go pretty well with the headaches - I honestly think this is 1 of the longest periods I've had in a long while (perhaps some yrs) where I've not had pretty bad headaches. I am so so glad Dr.Bragg has stayed part of my care and my life and that she con't to work with Dr.Iskandar (my Neurosurgeon since she moved, her former Partner) - together they have made a difference especially this last surgery though really I think this relief is almost an unintended benefit of surgery (no doubt moving the shunt catheter helped significantly, that radiating pain is 90% better and only occurs now on much rare occasion and to a much lesser degree).
Best perhaps of all (though don't get me wrong that relief is fantastic to!) but the CSF (spinal fluid) leak that occurred after this last surgery which continues to a small (or varying really) degree is what truly relieves my headaches. The 2 shunts alone make a significant difference in my headaches but I rarely feel truly great. With the additional CSF leak it is truly like a whole different situation and WONDERFUL!!!!

Heart rate wise, oh this heart rate of mine. I swear between the shunts and Heart which could drive a person nuttier!? I suppose that depends on the day! The Amiodarone which I've been on for I want to say about  a month now but I honestly can't remember has been going okay but doesn't seem to be working any to well. Some times heart rhythm and rate seem okay then other times it's just pure nuttiness and I am in now way being dramatic about this. I mean literally excess-long runs of skipped/extra beats (PVCs or whatever, has been different than even my normal, not normal) beats. so less than awesome.
I know Dr.Earing (Cardiology) is/was concerned about these and if the Amiodarone doesn't work there not being another option (other than going back to Cath lab to re-look at heart and rhythm more closely but I know Dr.Kovach is really reluctant to do that b/c of the 2 heart valves and (if I remember right) this rhythm is coming from an area where the new mechanical heart valves are or it may have been that this area + scar tissue would complicate any procedure. I can't remember for sure just that he is less than enthused to go that route. I completely get that! Hopefully Dr.Kovach has some idea or we could figure something out.
These rhythms are downright exhausting not to mention secondary symptoms it causes. Can only pray - pray for God to give my Providers guidance and for myself con't to ride it all out! God is good so as frustrating as it all can be (and oh it is at times I'd be lying if I said otherwise) I know ultimately 1 step at a time... AND will enjoy this shunt-headache relief however long it decides it is going to be good! Atleast 1 issue is being nice!!!!

                                                           Re-starting  Coumadin

I restarted the Coumadin today (oral blood thinner) and per Cardiology test INR (lab test to measure how thin blood is) Tues at Infusion (I LOVE that my PCP works with my Cardiology Team and will order the test for them + has said she'll be sure the result gets faxed to them). So i'll be able to have this drawn right at infusion similar to how I used to at CHW/FMLH. As in the past although Dr.Simpson will fax Cardiology the results they've asked I call and let them know so they can call back the same day or soon after with any changes they may want to make or when to test again. Due to our issues with this in the past and the concern of the TIA (mini stroke) that occurred a few months back + Cardiology wanting to prevent that recurring as much as possible (or atleast minimize risk from heart-blood clot risk). Never to dull but should be ok and thankfully my Team is all working together! I also have to say the 'Care Everywhere' system which allows my Providers at 1 health site to access records for Providers at another site is really, really nice!
Thanks for stopping by,

Erica

  A bit late but Happy Thanksgiving! I will admit I've struggled a bit this holiday season to get excited for the Holidays (I am looking fwd to some parts just struggling with other things) but no less I am grateful for all I have and all who are part of my life.

Things con't to go pretty well with the headaches - I honestly think this is 1 of the longest periods I've had in a long while (perhaps some yrs) where I've not had pretty bad headaches. I am so so glad Dr.Bragg has stayed part of my care and my life and that she con't to work with Dr.Iskandar (my Neurosurgeon since she moved, her former Partner) - together they have made a difference especially this last surgery though really I think this relief is almost an unintended benefit of surgery (no doubt moving the shunt catheter helped significantly, that radiating pain is 90% better and only occurs now on much rare occasion and to a much lesser degree).
Best perhaps of all (though don't get me wrong that relief is fantastic to!) But the CSF (spinal fluid) leak that occurred after this last surgery which continues to a small (or varying really) degree is what truly relieves my headaches. The 2 shunts alone make a significant difference in my headaches but I rarely feel truly great. With the additional CSF leak it is truly like a whole different situation and WONDERFUL!!!!

Heart rate wise oh this heart rate of mine. I swear between the shunts and Heart which could drive a person nuttier!? I suppose that depends on the day! The Amiodarone which

Nothing major.. Nothing to new.. AZ trip (my favorite Nrsgn), Heart F/up, etc.

I've been particularly bad about writing here lately so will try to do a atleast semi update of a few things I've been up to. - I still con't to feel pretty good headache wise which is some kind of miracle given the LP Shunt surgery was the end of Sept and it's now late Nov and I still feel pretty good. A small CSF leak cont's to play a HUGE part in that but I am not complaining!!!

I have to admit I had not entirely understood this/why it makes such a difference in the past but a few wks back was talking to Dr.Bragg (my former Nrsgn, she cont's to stay in touch and involved in my care). Anyways she explained to me that with my skull thickness/non-compliant skull even small increases in pressure which most people are able to adapt to with my body (my skull) does not have the extra capacity (space) to expand nor can it expand due to stiffness and so even very small increases in spinal fluid (CSF) creates headaches, nausea and can lead to throwing up.
Interesting and completely made sense + I now get why Dr.Bragg advocated so hard I consider the cranial vault expansion (bone thinning of skull bone) albeit still sounds freakish to me and since it wouldn't be with her I'd be even more hesitant. Still interesting and good to understand it better though!
                                                                    

Cardiology 6mo Appt:
This went okay, certainly not a bad appt. He cont's to support my trying the Humira study (asked if I was still doing this, what was going on with it). I go out next mo to do actual enrollment and start the drug (whether actual Humira or placebo initially) but I had opted to put off the actual enrollment visit after the TIA/Mini-stroke I had about 2mo ago till next month. I am glad I waited honestly mostly b/c I  ended up going to San Fran, CA to speak at Sangamo and then the week after that speaking trip I made the trip to AZ (for which I got to see Dr.Bragg) -> That trip seeing her alone was worth the exhausting nature of it though!
Anyways so Cardiology Appt we are leaving things the way they are. I have been fiddling with my Lasix dose, many days just doing 20mgs 1-2 times a day other than infusion days wheres before I was on 60mgs 2x a day except on the occasion I'd skip a dose.
I am having some intermittent breathing issues but this is intermittent and I go back up on the Lasix as I see fit. I HATE that med (oh heck I hate the Spironolactone to which is a longer acting version of the Lasix!)
Blood Thinner re-trial - PCP
We are going to trial re-starting the Coumadin which is a safer blood thinner than is the Lovenox injection I give myself 2x a day (safer only in the context it's easier to monitor levels) but while we tweak and monitor the dosing initially for a while i'll also have to stay on the Lovenox injections. Initially my Cardiologist wants lab work done every 4days after I start and expects we'll have to go up on the dosing (they'll start at 5mgs) but I am semi confident we'll have a little easier time compared to 13mo ago when we where dealing with shunt issues.
This said just have to pray the CSF leak cont's and the shunts keep doing their thing so we don't have to start the INR mess all over again! Dr.E said he would just go back to Lovenox alone again if we ended up having issues at any point as he doesn't want dosing to get as high as the level of Coumadin I was on just over a year ago. CRAZY STUFF!

As far as testing goes we are waiting to start the actual med till next Fri (day after Thanksgiving) so there are Providers around at Cardiology to monitor the blood levels and give feedback. I am ok with that as it gives a little time to get a few things squared away.  My PCP has already put in a standing order at Dean for lab draws and i'll be able to get some of the lab draws while at my weekly infusion + she offered to make sure results get faxed to my Heart. Because of electronic med records i'll also leave a msg for Cardiology Nurses and they can access the results remotely via EMR. They in turn call back later the same day with if any changes in dosing are needed, when to test next, etc.

B/c this week wasn't busy enough I also had knee MRI and Neurosurgery f/up after (to have shunts re-programmed) Monday + Ortho Appt today.  The Orthopedic dr. opted to do a knee injection (wasn't as bad as I've heard some people say they are). Hopefully this might finalllyyyy calm the irritation that's been going on since the end of Sept!?!?! I am hoping!

Will try to update some time soon. Attached are a few pics from when I was in AZ, including Dr.Bragg and I. Her daughter (she's about 6mo younger than Z) who took the pics. Was sooo nice to see Dr.Bragg and to see her daughter again!!!! So grateful she took the time to come pick me up and have supper + we had a funny candy store run.  I don't remember why we went there but was pretty funny!. Couldn't ask for a nicer Neurosurgeon! I will always be grateful for her and certainly always miss her!!!
Thanks for stopping by,
Erica

Speaking @ Sangamo, Headed to Phoenix, Hydro Walk

The trip to Sangamo last week was good, a little stressful on my part although that having nothing to do with the actual trip there. I think my talk overall went really well and seemed to raise many interesting questions and interesting points. Afterwards 1 of the Sangamo MD-Researchers came up to me to ask a question and asked if anyone on my Team had ever done further testing to see why I have such moderate MPS presentation but such mild outward appearance. It was actually a really interesting conversation and I wish I could remember who it was that had asked me!

Needless as I've written here my Metabolic Genetics dr. has done the whole exome sequencing and just taking a long, long, loooong (nearly 2yrs now) time to get the results. This delay in results is due to the testing was done under a study or some special way so it doesn't cost my insur. anything but in turn the results take a lot longer due to being done when time permitted I believe (it was something along that line).
In reality whether there is or is not something else going on thankfully I've made it through the worst of surgeries i'll likely face (the Open Heart Surgeries!?) and when we do get results I think many on my Team are very curious to see what the sequencing shows.
Simply out of curiosity if I remember I plan to ask my Cardiologist about the testing overall or what his feelings are in general (he also felt there may be something else in addition to the MPS I going on) when I see him coming up.

                                        Sangamo - (Photos hanging at their headquarters)

Otherwise the CSF leak is pretty well healing up, it seems there are still some periods oddly enough where fluid forms and the only way I know is I feel better and so then I (lol, I know maybe weird) feel to see if there is a CSF bubble on my back and there usually is a small 1. Thankfully this has been occurring quite a bit so I have more periods where I feel good than periods where I don't and it seems if I get up and move around aggravate my back a little it aggravates the area causing the leak to open up or increase or something. Whatever it is I'm not complaining as I am flying out to AZ (Phoeniz, to Hydrocephalus Walk) Fri this week and volunteering at that most of Sat. Will be GREAT to feel better for it!!! Also makes flying much more tolerable!

                                Speaking at Sangamo, Sangamo Reps, Halloween and new Car 

                                                             
On a completely separate note my car has had some issues lately and have had to do quite a bit of repairs on it (my car has over 200,000 miles, I drive a lot) + this last wk was really being weird. That amongst a few other things was a nice source of stress while I was in CA! Anyways I've never really known what my credit score was and honestly thought it was probably pretty bad (I can't really say why I would think this I do pay all my bills on time, have 2 store credit cards that anytime I use them I pay the charges immediately after I use the cards (so I can get the discounts! =D ) and often just pay the charges in full right away. Well anyways so I couldn't get there so my Dad went to the bank and talked to Loan guy he works with and that guy called me + I apparently have really good (excellent apparently!) credit rating. So I went searching for a new(er) car. I didn't want to buy brand spanking new - I like buying a different car every 4 or so yrs but found a 2011 Chevy Aveo with really good mileage, very small, great MPG (what I ALWAYS look for b/c I drive a insane amount) and is cute. I go tmrw (Thurs) to sign the papers for the loan but have about a 1/3 of the total cost I am paying down so my loan payment every mo won't be bad (and the quicker I pay it off the quicker I can drop full coverage insur!). I like my car now but I guess will be fun to get something new?

Will update soon, maybe sometime next wk after I get back from AZ, Dr.Bragg is slated to speak at this Walk I am going to although she messaged to let me know she is on call so she's hoping she'll still be able to come. We are going to try and see each other 1 way or another. I am hoping! I will always be grateful to her, probably especially so b/c not only she took on my care and never gave up but now she's remained steadfast in helping me this past year despite she's in AZ now. She's amazing and I am grateful to count her on my Team yet even if from a distance!
There are other symptoms going on but another day, another update and it isn't pressure so as I wrote above I am enjoying that however long it lasts!
Thanks for stopping by,

Erica