I try not to be one to put to much stock in 'wishing' or even really hoping (but I still kind of do regarding some things) that things like the shunts will stay working for the long-term. I think I realize my history and so instead try to be a realist and instead of 'hoping' for something to work for a 'long, long time' I simply appreciate when something (like the shunts) keeps working reasonably well day to day and appreciate each reasonably good day as it is. I guess I believe in not spoiling now wishing for something
that may or may not happen but in all likelihood will happen (if that makes sense, not sure how to explain what I am thinking).
The reason I share that is today while driving to and then home from the Pulmonary Appt (about an hour drive each way) I kind of suspected the Xrays would show the fluid was even further improved and related to that I was thinking about this whole year, the various issues that have occured but also the various good improvements we've had (whether short or long lived) with various issues. Thinking about all of this just makes me think of the New Year and kind of wonder what it will bring but also renews my appreciation for those things we have been able to figure out or fix even if imperfectly and even if not a likely forever fix.
In any case today I saw my previous Lung dr at FMLH, she is who along with my Cardiologist 1st suspected the MPS or Lysosomal diagnosis 10yrs ago. She opted to repeat the Chest Xrays and 1 other looking at the lungs from a slightly different vantage point.
Thankfully these showed the fluid is now "negligible" (Yay!) though initially she apparently had some concerns regarding "reduced breath sounds" on the R side. She thought perhaps the reduced breath sounds where due to this area having been entered so many previous times both w the 2 OHS and with the repeated TPL Shunt revisions so altogether, all of these surgeries creating scar tissue. I know Dr.Bragg has worked w the Peds Genercal Surgeon on the last 2 TPL Shunt revisions so Dr.Biller is probably right in her thinking.
She as am I was happy with the improved fluid as she prior to the Xrays raised the potential she may need to do a test where they insert a needle through the ribs to remove fluid and test it (something my PMD and the other Lung dr had also mentioned, a thoracentesis I think it may be called), definitely not high on my 'sounds like fun' list. Additionally this is a test that would be more complicated bc of the TPL Shunt and Dr.Biller commented along the lines 'I dont really want to get your Neurosurgeon mad at me'.
Thankfully it seems the fluid for now has fixed itself, finally (!!) and hopefully the residual cough which is pretty non-existant in the morning but worsens often significantly by the end of the day will sooner than later go away. Thankfully it's still the case where the cough is improved since prior to the VPS revision as prior to that the cough pretty much lasted all throughout the day. I definitely pray it will resolve altogether at some point though!
As far as any F/up she just said if I need her to call or let her know and she'll see me which like my PMD, Dr.Bragg and Cardiology if I call their Secretary's (sp?) or Nurse they open up Appts much quicker vs going through scheduling. In Dr.Biller's case we email some to (as do some of the Providers above) so I can often run questions by her/them without having to make an Appt or call their Nurses which is nice! B/c I hadn't seen her in atleast 5yrs., perhaps more, I wasn't sure if she would still see me but when I had initially emailed Dr.Biller she responded back saying she'd be happy to and would see what she could do as far as finding a spot "to sneak you in sooner".
I am always grateful when Providers remember me and are great about taking back on my care!
My hope is the fluid that had been in the pleural space and which drains from the TPL SHunt will (other than when draining from the shunt) stay pretty minimal and not build up again! It's definitely weird (or atleast it seems like it to me!?!) it took so long for this effusion to go away (over 2mo). Any pleural effusions prior to this i'd never had symptoms with.
FMLH Infusion
I started at FMLH infusion last wk, the Nurses seem nice and 1 in particular who had me my 1st wk (last wk) at FMLH stopped by several times this wk to check in see how I felt after last wks infusion (felt pretty rough, the total volume was almost double what I normally get as the order when faxed over hadn't specified that I get the drug mixed in about a 1/3 the total volume most pts receive). Last wks Nurse took over for the Nurse I had today and finished the last 3 or so hrs of infusion and in general just seems to have an interest in helping sort our new rate/ramp up as she is who spent the majority of the time adjusting the rate Monday so we'd end up over 5hrs.
Thi Nurse last wk once we realized the drug was mixed in to much fluid and my cough was becoming increasingly worse as the infusion wore on slowed the total rate time down. This wk the drug was mixed in the right volume but my PMD had suggested I ask about
having the drug (Aldurazyme, ERT) infused in over 5hrs run time vs my typical 4hrs to try and combat the cough (which had in general been getting worse for months during infusion) and to prevent what she and my Cardiologist feel is/was fluid overload and thus lung congestion secondary to the heart issues and a high sensitivity to fluid shifts.
Yesterday's infusion did go alot better, we monkeyed around w the infusion ramp up and final rate to get it run in just over 5hrs (I didnt end up getting home till a little after 8 Monday night after leaving at 9 that morning). My cough though for the first time in months didnt get worse with the infusion and was pretty much at it's baseline by the end of the day! I am awed and grateful the Nurses where so easy going about just switchng the infuse time from 4hrs to 5hrs without needing my PMD, Cardiologist or the prescribing dr. to write a new order!
Hand Surgery
As far as the Hand surgery next Thurs., it seems my Cardiologist wants to talk to my PMD
about the INR mngmt pre/post. Since my PMD is out of the office until Monday the plan is to still stop the Coumadin this wknd but then I think he (Cardiology) wants to talk with
Dr.Simpson regarding a plan if the INR where still to high when I test Weds prior to Thurs surgery. Hopefully INR will just be low enough and not be like this last shunt revision where it took forever to drop and was still 2.2 the day of surgery! Thankfully Dr.Simpson is great about talking to my other Providers when need be so I am not to worried about things getting sorted out.
2014 - 2015
Otherwise I am signing off this year (2014) with the simple wish that everyone be safe!
I am admittedly wondering and curious what 2015 may bring. I pray for decent health and not to much changes (seems silly to wish for no changes as that seems unrealistic) + either for us to figure out something better for the shunts (headaches) OR at the very least the shunts stay stable working wise. It really would be fantastic if we could figure out a solution to no headaches but i'll also jsut con't to be grateful to have a Nrsgn that believes me and Providers in general that work fairly well together!
My wish and want is the same for the heart issues, to both feel better and as well for there to not be any big changes in this next year that require us to go in again and have to replace the next valve. Perhaps I might wish for things to stabilize or that we could figure out a better med regiment that had less overall side effects? I can wish, right!? =)
And last related to those 2 things I hope the fluid issue related to the TPL Shunt and the heart issues stays stable and the cough improves, ideally completely once and for all!
Blessings for 2015 to be a good and kind year to each of you reading this!
Erica
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