Everythng seems to be in place for the Appt in late April with Dr.Bodamer at BCH, this means i'll fly in to Boston Thurs afternoon stay overnight neat the hospital at a hotel I reserved and see Dr.Bodamer Fri morning. He is the dr willing to prescribe Elmiron, the anti-inflammatory type drug (it is a drug originally approve for Interstitial Cystitis).
I have plans at the moment to meet up with my Case Manager from Genzyme (company that makes the enzyme replacement drug) for dinner and Fri going to stay with friends who are also on the RfRD Team and Marathon wknd activities begin Sat morning.
In all honesty I think i'd probably give my left foot to feel even a little better before that trip! I wish we could adjust the shunt valve(s) or figure out what is going on and not to mention figure out why the TPL Shunt is causing such (at times) extreme irritation to the sciatic nerve and other times the pain/discomfort is less but still not that great. It really makes little sense!?
The headaches and thus leg discomfort seemingly due to nerve irritation continues at it's lovely own drumbeat. I am frustrated by it but at the same time what can I exactly do about it on my own!? NOTHING! I hate to keep asking Dr.Bragg for help though am going to have to again as I can't take this. Even simple things like standing to brush my teeth or today standing intermittently in Church was down right aweful!
Honestly I think I wish we could just get back to whatever caused pre-Jan to be better! I can't help but wonder if neither shunt is working as well as it should be, I mean I know based off my own symptom progression and previous dealings (many times over) that the VP Shunt is working just not optimally is my feeling. I feel like when this gets to that pt then it puts more pressure on the TPL Shunt which is super irritating (literally) to. Sometimes I could just yank that damn shunt out of my mid-back! I honestly wish it just was positioned differently or something. Something needs to change =/
Non-the-less I don't know, I guess it's just day by day with these crappy symptoms and keep trying to do the other things as much as possible that do make me not hate these shunts quite so much! =) I absolutely know the shunts help and make life better but they sure work to their own beat and as they please vs the times we've had really pretty good! I guess in other words it's just have to chose to smile despite often feeling really kind of crap?
I think I may have written about it in my last post but in talking to my Cardiologist Nurse after the last INR draw a few wks ago regarding the (breathing) symptoms I have been experiencing we agreed if I was ok with it I could update them this next INR draw (today) to update them on how I felt and if we should move up the Cardiology Appt.
On a good note albeit aggravating bc it means I stay on the near double dose of Coumadin my INR today was 2.03, 2 wks ago it was 2.01. This as I said is good but I had really hoped i'd be able to drop the dose back down! I am unsure why it is suddenly taking such a higher dose of Coumadin to be even at the bottom range of my INR range but wonder if dropping the fish oil dose I take to just 1 capsule a day is the reason. Doesn't really make sense to me, but maybe.
Anyways so I talked to the Cardiology Nurse today and she is talking to my Cardiologist to see if he wants the Echo and 6MWT scheduled sooner to. I am guessing the appt would be sometime in the few weeks as the symptoms are bothersome when occuring and occur intermittently (but semi-often) throughout the day BUT also I don't think is an urgent issue. Just another irritating issue that likely won't have a clear answer and honestly if I had to guess would bet it has something to do w the shunts not working optimally and headaches/others symptoms building up so frequently.
My PMD wondered if the lasix (fluid reducing med) dose needs to be adjusted. I already what I consider a crazy dose so am hoping we could figure something else out or switch a med vs increasing that dose. Even my PMD commented in her same note regarding these issues she realizes how sensitive i've been to adjustments in this med. I don't think there is ever a simple answer! A nice easier answer would be we could just adjust something over the phone and not have to go in! I know I am deaming (bc Cardiology feels the meds are "really at max doses already" so isn't as easy as just adjusting any 1 dose.
For several months reducing the amount of fluid I drank and our reducing the ERT infusion rate helped symptoms overall although that was more the residual cough and pleural effusion fluid and that improvement was a combination of the Nov. VPS revision and this changes in fluid. This symptoms just seem different, like symptoms i've had in years past. Hard to say BUT not exactly what I want to be doing, not only dealing w headaches and having to repeatedly ask Dr.Bragg for help but now damned cardiac (seeming) symptoms to! GRRR!!!! <--- pardon my whining/PnM'ing btw.
The best I can describe the symptoms is a winded feeling, hard to catch my breathe BUT not the same as say i've just run a race.. Also an 'Air Hunger' feeling, almost like you feel when trying to breathe underwater. This is by far the more frequent of the symptoms and the worst! Is thankfully intermittent though and honestly even when it's occuring i'm not sure it'd be obvious to anyone around me?
Believe me when Jane, Dr.E's Nurse was asking questions I am sure I sounded like a flat out moron trying to think of the best way to describe what I have been intermittently feeling! You'd think living w/this everyday a person could just explain it but so is not my case!
Will update others things in a future post, watching Zan tomorrow after school. While I rarely have loads of energy I very much enjoy being with him! Bella, my niece, Z's sister was asking me the other day to go for a walk with her which I didnt (thankfully my Parents where at my Sister's to and Dad went w Bells and Zan!) but is fun to just do relatively low energy things w the kids and often Zan (or Bell) is just happy to have my phone and take pics which are fun to watch! )
Will update soon,
Thanks for stopping by,
Erica
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