Today, May 15th, is National MPS Awareness Day...
Fittingly I guess for the Awareness Day I spent most of this morning and part of this afternoon in Provider offices; first in Madison seeing Dr.Bragg and then this afternoon at PT. I am dead-tired!
Even though I trust her very much and know in reality she will be there to help me I still get nervous everytime I see Dr.Bragg, I get butterflies calling her Nurse or Secretary though both recognize my voice (yikes!) when I call and both are nice/good at what they do. Why, do I get nervous then? Because I HATE asking people for help, hate that there is on-going things I need their help with and I wish I could work out problems myself! It doesn't matter that i've done this over and over and over with dozens of drs in the past 8-10 years i never get less nervous calling. As much as I have to ask other people for help, I sure hate it no matter if it's providers, my parents, ANYBODY!
Anyways so Dr.Bragg and I talked about the future after the heart valves are replaced and what impact did she think this would have on my shunts or future revisions? I was nervous about this. I do realize people still have some surgeries while on blood thinners but I also talk to many-a MPS Adult who have had drs tell them they wouldn't operate solely because of their being on Coumadin/blood thinners. Thankfully Dr.Bragg just said that when we are faced with this issue we will formulate a plan and most likely would be (if the Coumadin couldn't be stopped ahead of time) admitting me the day before surgery, starting IV heparin and running this throughout the surgery then post-surgery she/they would start me back on the Oral med once INR levels where stabilized usually taking she said a few days. I get the feeling she is a little concerned they are cont'ing to post-pone the surgery, though i've gotten that from other MPS Adults to who keep saying "you want to make sure you do it before there is permanent damage." I also had an friend/fellow MPS Adult email me tonight saying she definitely thought the decompression surgery was worse than the valve replacement surgery so that as odd as it sounds was good to hear! Since i've had numerous spine surgeries then maybe the open heart surgery won't be as bad as I think!? Dr.Bragg did also say that since we typically end up taking a few days to let pain settle down and get back to the normal pain med regimen it shouldn't add to much addt'l time to any future revisions.
Her suggestion she said she had been thinking about and needed to confirm with the Codman Rep that we could do now for the headaches was take out the Strata (5 setting) valve in my TPL (thoracic-pleural) shunt and if she is given the "it's ok" put in one of the Codman valves either the 'Hakim' which I currently have in my VP shunt as well or there is a semi-newer (Certas) valve made by Codman that is resistant to being changed by MRI (something we do frequently for the shunts and for back imaging) but also has many more options for settings (18 or 20, not sure which) like the Hakim valve. In the case of the Certas I would then I think be able to have MRIs done at other hospitals (UofMn study for instance) without 1. having that hospitals Neurosurgeon (in the case of UofMn) to reset the valves or 2. be tied to only having MRIs at her hospital, say if another provider wanted one done for a different reason.
She mentioned putting an anti-siphon device in the VP shunt but felt like this would essentially be the same as our having previously had 2 valves on the one shunt and wouldn't help symptoms.
And one other thing she talked about was putting the TPL shunt back to draining in the stomach but she said bc we never really did confirm if it was an absorption issue that caused the stomachaches (I actually think those where directly tied to the shunt infections as I only got those symptoms when I also was either being treated for the CNS infection or in the case of last summer/fall a un-treated, not yet found CNS infection. The stomach symptoms cleared up w both infections as soon as we treated the infection, took out the infected shunts and replaced with clean, non-infected shunt hardware again. I don't think she is leaning towards moving the TPL distal end back to the stomach regardless, more or less I think was just musing outloud (a trait I fully appreciate, I like knowing what her thoughts are, even the ones we don't use.)
As far as when we wll do the shunt revision surgery I am not entirely sure but I think due to Dr.Bragg being out the 1st whole week of June and her thought being if I wanted i could finally, still go ahead adn get the Hand surgery done on the R side (if Cardiology approves) and would also be able to keep the other appts like Cardiology, etc next week and what I have also the following week. I am unsure when I will find out when they want to exactly schedule the surgery for but at the latest I imagine at next Weds's shunt reset appt they should have more info if not before.
I had originally changed a Pain Mngmt fup appt from tomorrow to last week and then ended up re-moving it back to this week (thurs) but got a call from Dr.B's Secretary today that she needed to move it to next week. I am just glad she atleast called this time! Unfortunately though this means an appt nearly every day next week with; ERT (infusion) on monday, in Milw (CHW), Cardiology (1 month) fup on Tues also at CHW, Quick-brain MRI and Appt to have both shunts reset right after (10:45/11:30 in Madison (AFCH/UW) and Pain Mngmt also in Milw now on Thurs. YUCK! I am looking for a new laptop (typing on my netbook) so may still go to Milw tomorrow to Best Buy or other computer type stores but sort of depends on how much energy I have.
On a completely different note we have our last Sunday School class this Sunday till Fall (my co-teacher and I have both agreed to teach again next year, 3rd/4th grades) but that doesn't start until our 1st mtng in July and class again till (I believe) August. Very hard to believe the year is over, it was incredibly eye-opening to me though both in that i'd never want to be an actual teacher (our kids where great, some we will have again next year which is really nice) and 2. I definitely felt like it got easier as the year went on and I developed more of a rhythm or set-up to our Lessons and activities the weeks I taught (every other). Of course knowing the valve replacement is coming down the pike I am not entirely sure how that will impact SS, it may be that Joan teaches those wks I am gone, much the same as this year with the numerous and long shunt in-pt stays or it may be that I try to get a sub from the pool we have to teach while I am out. Joan and I have talked about it some and to some extent will just depend on when Dr.Earing (Cardiologist) thinks is best to do the surgery. He has both been leaning towards doing it sooner (I think i've written about this in past entries) or it may be that we re-evaluate in 3-6months depending how the symptoms are and meds are going. On that issue I should know more next week.
I'll likely update again sometime next week,
Thanks for stopping by, and if you wore anything purple today THANK YOU!
Erica
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