Monday, May 13, 2013

Day-to-day with MPS; Odds and ends.

I talked to my GC today while at ERT (via email ironically though in the same office) and we are going to slow the infusion to either 4 hrs for the drug itself to infuse (is just under 4 hrs lately due to reduction about a year ago in the overall fluid/saline volume) or a bit slower. Because I seem to be retaining fluid on and off (up and down weight gain by as much as 5-7 pds, from 112pds to 124pds (I realize that is more than 5-7) so our increased/extra vial(s) are now the exact dose, usually, not extra. I see Cardiology next week so we'll see what he suggests as far as the seeming fluid retention, it usually isn't extremely noticeable just semi-puffy legs by days end.  Breathing has been somewhat improved, yay! I think the Aldactone and then the doubled lasix helps.

See the post later in this update, written from last week but I see Dr.Bragg on Weds for the headaches and just to make a plan regarding symptoms now vs whenever we do the valve replacement(s) and associated blood thinner be it soon or con't to post-pone for the very reason of blood thinners will complicate all future surgeries after  the cardiac surgery. I talk to some of the (few) MPS adults who take blood thinners post their own valve replacements and how many surgeries they need but are never done now bc their drs are (I guess) afraid of dealing w these and surgery especially more elective surgeries. In one case I don't think the surgery (in my opinion) is particularly elective but that is totally a patient and their providers choice and what symptoms one can or will live with. Not mine  to give a say on, though I sure do care and totally know how the person feels. Ugh at MPS!

Otherwise have been going back and forth w UofMn trying to schedule the study dates, bc the neurosurgeon has to re-program the shunts after the fMRI that is done per this study and i've had so much going on we've had a few issues finding dates that work for the study researchers, myself and the neurosurgeon! Shooting for mid-June this time. We'll see if it works for all of us! :)

Ever since I was finally diagnosed 8-9 years ago i've really tried to be an open book on many aspects of my life with MPS, especially bc I really wished when I had been diagnosed I had, had someone whose issues I could have read about and (in some ways) compared myself too. I guess i've wanted to be/hoped to be a source for new or  really, even older (and I get lots of those messages/emails!) MPS families or adults and then after I started dealing w the shunts and their on-going frustrations I had wished someone out there would write about their experiences with shunts, again didn't really find anything. I never found "that somebody" but here again have gotten so many messages from people saying how grateful they where for the incredibly detailed info regarding stuff my drs told me, my experiences with hydro, surgeries, scars, you name it I tried to really share it. I am actuallly still amazed how many people also seemed to really want the nitty gritty details about both MPS and especially about shunts both in and out of the MPS community. It has always been somewhat cathartic for me to write about my experiences (easier than talking about it, which I don't do often w anyone) and then the information is there for others to see "Wow, this really is normal" or "someone else gets it" ( get that alot).   So why do I write the above? Because I REALLY wish some other MPS adult would write about their experiences, I really like information, it is how I am able to deal with this crappy disorder and it also helps me to learn, too. I would give just about anything if someone else would write what their heart surgery was like or their shunt surgery (I don't know  if there are any other adults my age or older who are shunted, though some I suspect should be tested) or even simpler things like how they deal w insurance, drs, life and finding a balance? Anyone!?!? :)

ps: I don't worry to much about finding a balance bc I can't leave MPS behind, it follows me and is just a part of me so no-sense in trying to pretend it isn't me and I am not it... But still I do wonder how others find their own form of "balance"? For me it is just cont'ing to do the things I like to do around all the things MPS thinks I should do..

See below, thanks for stopping by,


*This was written mid-to-late last week.

I've written a couple other articles and blog posts this week so haven't been here writing since last week. I had asked the RN (Stefanie) at NORD if they would write anything for their NORD blog regarding MPS Awareness day and she in turn asked me if I would like to submit something. I wrote that article monday while at ERT (fitting) and then also had an article to write for the MPS Society 'Courage' newsletter regarding my trip to Boston so also wrote that partially sunday night then finished it while at ERT (infusion). I am waiting to see if either needs corrections (likely) for space purposes or just general editing. I was super amped to write the one for NORD especially so I hope it turned out ok! I will share the link or article here next week and on the fb page for the NORD blog submission. **The NORD article is being edited for space and so will be run in the next coming week or so. I may post an "un-edited" version here sometime this week. Also I encourage everyone to post regarding May 15th, Awareness day to the NORD fb and twitter (if you use that medium) pages!

I also am writing a submission for the Global Genes Project blog as a  'Guest Blogger' for MPS Awareness Day (May 15th, wear your purple!) but have to start that yet. ***I actually never got to writing this yet as the past week has been pretty hectic and tiring so I will do that sometime in the next weeks.** I agreed to watch Zander this Sat night and sunday we are having a cookout at my sister's (God grant me the energy for this wknd, given the headaches and feeling super tired) and tomorrow (fri) my sister and I had previously decided to get-together and go look for flowers for my Mom's Mother's day present. Even though I don't feel the greatest I really enjoy having Zander here so am looking fwd to this wknd.

I asked Dr.Bragg about moving up the appt w her so I could quiz her some about the headaches (knowing we may not be able to do anythng) and almost more importantly so I can talk to her about the future Coumadin; (blood thinner) which will make future surgeries more difficult (not impossible just alot more planning) once it is commenced post-valve replacements down the road; I fup w Cardiology in 2 weeks so she suggested I meet with her early next week. I do like Dr.Bragg (and her staff) and we get along well but ooh my gosh I feel about like I live there! Atleast we have had a on/off break the past 1 1/2-2 months since the last revision. I also am incredibly grateful she is willing to email as it does make comunicating alot easier.

Last I am working on the referral to the PMR (physical med rehab) dr that Dr.Bragg and her nurse both refer pts to alot and really like. This dr is out of network w my primary insur so I will see her using my secondary insur as I do w my Physical Therapist and Pain Mngmt dr if all works out. My PCP is maling me the referral and I will put this together with the records I have from my former PMR dr at FMLH and submit the records by weeks end if  all goes well.. Really, all I should have to do is take the records out of their appropriate binder/file and scan to the computer + fax everything.

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