If you've read my last post you'll know what's been going on already but after having saw my PCP the other day (for something unrelated to the shunts but I asked her about the symptoms since there) she talked to my Peds Neurosurgeon (Dr.Simpson typically will only call Providers of mine if she has a concern or something she needs to verify say for a surgery). She messaged me after the Appt to let me know she had called him and related her concerns for possible infection - especially given being on the Humira. She and I both agree/agreed infection risk is unlikely but b/c of the relatively newly started Humira (which can lower immune system/ability to fight infections) she wanted to rule out an infection.
I know blood tests for the actual Humira study last wk per my Study Team where all normal so it really was just concerns b/c of the shunts, the heart issues and the shunts + have had new un-explained low grade fevers the past few days and then fevers on and off during my infusions the last few months (I can't remember how Dr.Simpson explained how infusion could stir up if there is a infection laying dormant and thus bring out the short term fevers but it made sense when she said it).
Non the less so after she talked to Dr.Iskandar (Peds Nrsgn) the other day the Appt with him was moved up as symptoms had been downright AWEFUL Weds night and Thurs. He agreed w/her about doing shunt tap, testing CSF just to be sure and rule out a infection. That Appt was today and I guess I rarely if ever go in to these Neurosurg. Appts expecting anything BUT I atleast hoped we night just tap the shunts atleast rule out for sure if there is or is not an infection. I really do agree there may not be BUT there also is little other reason to explain these symptoms. Just once it would be nice to rule in or out a shunt issue quickly?..
None-the-less we wait and see and believe me i'll pray it just goes away. Per a MyChart msg from my PCP Dr.Iskandar did call her and update her after the Appt. so if nothing else atleast was listening to what I said in part while there (which was in a way a wasted trip, if he wasn't going to tap the shunts I really shouldn't have needed to go). Non-the-less I guess if nothing else he asked me a question about another of my Providers (Cardiology) and why did I think that dr would be upset (or whatever word he used) with him. To that I honestly didn't really know what to say but communication, it really comes down to my Providers and b/c I am a complex (really complex) case and 1 issue almost always has an impact on any other given issue I deal with (be it shunts to heart or shunts to blood thinners, shunts to endocrine issues, and so on, etc). Key really I tried to emphasize is it's really important he be willing to work with the rest of my Drs., pick up the phone or message them if we're dealing with an issue that might impact their issue or a surgery.. Was a fairly long but good conversation. I try to not do this but today when he'd try to stop what I was saying to make a comment (for instance that he understood) I cut back in without trying to be rude and re-emphasized how important this was, that communication really has to happen to make care better between him and other of my Providers and make issues less complicated. Given he called Dr.Simpson after the Appt he atleast was listening. He also asked that I tell him when I thought he needed to/should talk to 1 of my other Providers which I admit is really outside my comfort zone, I don't entirely always know when he should but together we can try to figure it out. I guess I'm just used to others of my Providers that do it automatically and let me know after.
My PCP asked that I let Cardiology know what was going on as I'd gained 4pds overnight (stomach I think, has been really swollen) and she increased not only the Colchicine (an anti inflammatory type drug) + the Lasix (water pill that keeps fluid off for heart purposes) which I had cut the dose a few months ago she upped back to 60mgs 2x a day for a few days and Cardiology agreed with. Cardiology Nurse (she's amazing, always grateful for the good Drs, Nurses on my Team!) just asked that I update them on Monday and they'd check INR (blood thinner dose) Tues per usual. That I suspect will be a mess as I haven't been eating much (I am on Lovenox already anyways).
Hopefully above all else these symptoms just will settle!!!! I feel bad and to boot was going to get my nephew this wknd and feel bad for not doing that. - I am VERY sure Z is disappointed and I am disappointed to not have him. =/ Hopefully next wknd, I miss him.
Lastly my study dr. (Humira, Dr.Polgreen) asked me to keep her updated, she per her email may opt to hold the Humira dose next wk till we get these symptoms sorted out if it has not calmed. I am praying all will have settled. I actually think in small ways the Humira is helping (see my last post). I am usually really hesitant to be sure about something like a placebo vs real drug but this time I truly think it may be the real drug. LOL, i'll really think I'm crazy if at wk 16 it's not!
Will try to update again soon.
Thanks for stopping by,
Erica
Past few weeks to Tues -
Shunts - so good, so bad and so ?
Late last wk, beginning of this wk I couldn't help but smile to myself as it's really seems like I may be on the Humira (vs placebo) - obviously I won't really know till week 16 but for several reasons I suspect it's actual drug. Anyways 1 of the 1st things I've noticed is instead of waking up 3-4 or more times a night (which when the shunts are being good that 3-4 time a night for me is actually relatively good. When the shunts are being an issue I often wake up 5-6+ times a night to go to the bathrm. Anyways so the past wk or so up till mid this week I had on average every night but 1 woke up only once during the night!! That was/is awesome!
Of ourse my body being my body that couldn't last to long. A few days ago the pressure (headaches) that has been getting worse (definitely not as bad as sometimes but definitely worse) was pretty bad and bladder/low back/abdomen where seeming super irritated and incredibly uncomfortable. It didn't seem to matter what I tried I could not get the abdominal/side pain and radiating pain down my L leg to go away for the life of me and so minus going to a Appt I'd already had scheduled with my Primary dr (I guess good timing given these new issues =/ ) I have not done much the past 2.5days.
PCP Appt - Neurosurgery issues
Since I was seeing her anyways I brought up these new symptoms to my PCP who is concerned there might be a shunt infection going on. The risk of this is pretty small but she's still concerned and wants to rule it out b/c I've had low grade fever on and off for months during my infusions (I don't remember how she explained the possible relation but at the time it made sense if there where in fact an infection). Those fevers + starting the Humira a few wks ago (which can lower ones immune system) and the overall symptoms Dr,Simpson opted to call my Peds Neurosurgeon after I'd left her office yesterday.
He in turn apparently agreed with her we should tap both shunts and test the Spinal fluid just to be sure. That Appt was originally next wk but b/c the past 1.5days have been exceptionally bad - last night being realllyyyyyyyy baaadddd Neurosurgery moved the Appt up to tmrw (Fri) morn.
I am really not psyched at still another Appt this wk but hopefully is an easy Appt and can figure things out or get an idea what might be going on whether shunts or not. I am really grateful my Primary dr., called and talked to Dr.Iskandar on my behalf. She's one of my favorite drs on my Team (and I genuinely like my entire Team) as she spends way more time than she'd have to on my care, simply making many things less difficult. Anyone in the MPS (or chronic illness) world knows dedicated drs can make a world of difference!
