Tuesday, March 15, 2016

Few Appts, Cardiology F/up. Trying to figure things out

**I wrote this post earlier this past wk, just haven't hit send. -f

Today's (Tues) Cardiology Appt was ok, a bit frustrating for sure, not due to any one thing or issue but just because it's so very rarely clear cut with my MPS and the associated, secondary issues. Frustrating because it seriously feels like about the time we sort one issue and get it improved something else happens and sets that 1st issue back (the shunts having finally been working better, not perfect but so much better after Nov.) and then we did this 3rd OHS/MVR in mid-Jan. which we needed to do no doubt but the shunts (headaches/pressure) just haven't been the same since and I often feel like crap (the headaches/pressure follow a very predictable pattern) which honestly is just frustrating b/c I just want it to be good again. It was really awesome when we had the 2nd shunt back in place and I'd gotten new glasses (stronger script with bifocals) and those 2 things together meant I was finally able to read with much less issue. I slept better from a pressure/headache stand point and appetite was just better. Then bam, we did the OHS (Heart surgery) which in and of itself went really well, recovery was so smooth minus a few very small bumps (very small easily fixed things) and I got out after just a wk. which was AMAZING!
The headaches though where back  after surgery and have only seemed to slowly progress since then getting more aggravating. I don't know what to even say about them other than shunts are so good when they work well but (atleast in my case) they are so damn finicky and frustrating; I hate having to (what feels like) constantly ask my Team for help and I hate being reliant on my Providers to try and feel better.
As far as what did we decide at the appt? Nothing earth shattering, they'll  do a 2nd post 3rd OHS Echo around 3-4mo I believe  Nancy (NP) said (the 1st was a wk after surgery, this showed the Moderate stenosis in the new valve. A TEE which is a Echo done internally (in a sense) via a probe down the throat or on means like that, not entirely sure how it works when intubation yet) but that Trans Echo looked perfect. Very good. The 1 wk Echo post surgery showed the moderate stenosis but my
Cardiologist felt/feels this would/will improve if we got HR down (that's been solidly frustrating as it doesn't seem to budge much despite all these heart meds) but hopefully he's right and the valve is just fine. 
He doesn't seem worried so thus if could get freaking HR down the other symptoms I experience intermittently  (but semi frequently depending on activity) will hopefully improve to..
I think my Cardiologist said it himself he isn't absolutely certain how best to help this. He brought up the HR could be affected by pain an thus why it's been harder to control but we both agreed that seems less likely as my chronic pain is very well managed. We talked about it could be secondary/related to the shunts not working well enough but there to we've had high heart rates when the shunts have been very good (Nov-Jan for instance, with the EVDs, and other occasions) so that seems unlikely cause. He mentioned a few other things that could be interplaying but didn't seem to think those where causes either. He hopes with time it will settle down but we don't know as I've dealt w this high heart rates for some yrs now, atleast since after the 2 OHS for AVR/Aortic root. It's also increased in rate since the 3rd Heart surgery.  Like most freaking things  who apparently knows?
As far as how to try and get on top of it he seemed to admit some uncertainty but suggested we try a beta blocker again (oh joy) again in addition to the numerous other meds we have im place given this overly fast HR could be related to the MVR and perhaps (but we really have no way to know) will improve in time. He seems to feel that is less likely but also seems to be hanging on to a bit of hope for that. 
BB wise after much hesitation I agreed to give 1 another try and will take it at night, along w most of my other heart meds (some I take in the morning or as in a few some are 2x's per day). If it hasn't done anything in a 6-8wk period I am not staying on it though. I firmly believe if a med is causing worse side effects than it is helping then what benefits have been gained?
Otherwise he mentioned possibly starting/adding Amiodarone which is a more potent (I guess) arrhythmia med. With this he said it actually has less side effects than BB's in the way of fatigue but in other ways one has to be more careful I guess (sun, exposure and a few other things I can't remember are heightened I guess) but that he is more reluctant to start so is waiting atleast till after we meet with Dr.Kovach and look at big picture. And to see if the addition of the BB helps. I hadn't thought to ask but will talk to him and Dr.Kovsch, my Heart Rhythm dr. to see if the Ivabradine dose can be increased. I can't remember fully but thought Dr.Kovach may have said the very highest doses he's  used/seen used is 10mg, 2x a day which I am currently on 7.5mgs 2x per day. Isbworth asking as has so far had no side effects and prior to this OHS in Jan was at least helping some.
I'd  be more than ok not starting the new BB med, I'd be ok if we didn't have any of these heart meds really! 
At some pt I am going to say screw it all and stop em all. I don't mind the Ivabradine as I do think that is helping some, HR is still way to high (they'd apparently prefer 60-80 if I remember right) and perhaps the Digoxin is helping heart  muscle, I'm not sure. The 2 meds to get fluid off help but the doses are frustrating and frustrating it's like there no end in sight.
 I honestly had hoped after the MVR we'd be able to stop 1 or 2 meds vs adding 2 more meds! Frustrating of all as I come back to time and again is how  good the 1st wk was 
even if we where dealing with little things (UTI for instance) and being so tired but in general overall symptoms I just felt better. Simple and straight fwd once would be so nice. I can remember saying to multiple people in that 1st wk, especially once I was home (even if I was tired, it was a tired from how little sleep you get in a hospital at 1st) that I literally felt 'high on happy' bc I felt so good for once,  I literally think I'd forgotten what that good felt like!

I'll f/up with Dr.E and with my Heart Rhythm dr. in 1mo, in which i'll see Dr.Kovach 1st, we'll talk everything over and then i'll meet with both Dr.Kovach and Dr.Earing after. We'll try to formulate a better plan I guess. If lucky this med will work, I wont have side effects and god willing (please????) i'll get off some of these freaking meds at some pt.
Dr.Earing brought up how he doesn't see signs of Heart Failure, which is a good thing but I forgot to ask with all the ridiculous meds I take and the 2 to get fluid off wouldn't those kind of put HF under control? I don't know and will try to remember to ask next mo. I wonder that I guess bc of how I feel (some points better than others).

On a different note, they are going to try and get Cardiac Rehab started, their concern is the Rehab place will likely flip out over my heart rate I guess given I am taking meds and it's still high. 
Nancy, my Cardiology NP is going to fax over the most recent EKG and make the CR place aware this HR is basically my "normal" vs in most people I guess it would be more concerning. We shall see, right? **On that note I am opting to try the local bandaid station (community hospital ) Cardiac Rehab and that is set for the end of the mo/1st wk of April. It's supposed to be 3x a wk but I let the place know what ERT  I'd only be able to do 2x/wk (did the same after last OHS abeit was a different center) and that some wk I'll likely not make it even 2x a wk due to other things.

I keep telling myself, reminding myself and hoping I/my Team can get me back to the way I felt that 1st wk of the OHS. As I mentioned above  I literally in that 1st wk or 2 said to numerous people I felt so good, I felt "high on happy" because I hadn't felt that good from a heart stand pt in such a very long time.
 I pray we can get back to that 1st few wks and we  can get my back to feeling much better again!!!!
*The same really for the  headaches/pressure, I pray I/my Team can get back to how good I felt (wasn't perfect but was so so close to perfect, as close we'd had in a long while) with the 2 shunts. This OHS was needed, yet  it is hard how good the results where at 1st and  how different it has been since that 1st week to 1.5wks. Equally hard how good the shunts finally where, not perfect but sooooo much better then the surgery  and just like 3 steps backward again. I feel like this never ends! 
I WORRY with Dr.Bragg leaving (moving) end of May are we going to be able to figure something out 1st?
She said to me a few was ago re this (my paraphrasing) 'We'll  figure it out, we always do', I pray she is right and we can get the shunts back to a better place before she moves. I am worried. =/

I guess my sentiments about the frustrating heart symptoms  i the same I feel about the headaches/shunts with how good the headaches finally where before the Heart surgery then how backwards they have went since  with no clear solution why. FRUSTRATING!!!!! 
During shunt taps Dr.Bragg gets some fluid and does give some relief but it always comes back. To boot I kind of doubt whoever I pick to replace Dr.Bragg out of the 2 names she's  given /suggested will be willing to do shunt taps like she deserves to give relief.
Neurosurgery Appt / F/up -

I am pretty much in as much a loss now as a few wks ago which way to go re  choosing a new Nrsgn (Former Resident now Attending or Current Peds Nrsgn Fellow in Canada coming in Aug.).
I overall I just worry whoever I pick are they going to be like Dr.Bragg as far as really listen, not assume anything (for instance unless both shunts are completely failed I rarely look "bad") and work with me  as she has to keep trying to get to better even when better seems continually  short lived? Seems to continually slip away?
Some of upsides to Current Attending on Adult side
1. I looked back at my surgery records and he was in on 3 surgeries it looks like w Dr.Bragg.
2. Several Nurses from Neurosurgery flr, a Friend (whose daughter is also complex Hydro, sees Dr.Bragg's Partner)  all think he has a personality a lot like Dr.Bragg. All seem to think he has a good bedside manner which would be another plus. Good bedside manner usually means they'll take Patients view in to mind.
 This all would be a good thing if true (like I've said before I kind of remember this Dr just not well enough to really remember what he was like). 
I want a Dr who realizes, I know I may not always be right BUT I do know my body and I DO know pressure symptoms so I DO know when it's somehow related to shunts even if shunts aren't directly failing or more seems to usually be the case shunts  (in my opinion ) either intermittent occlusion or perhaps partially faiing. I really don't know on this last part just my feeling as its so clearly pressure and shunt related.

- I do worry a bit w the former Resident, Hydro isn't his apparent interest or Specialty so keeping up on research? Not that much ever seems to happen but being aware my situation is as far from normal as you can about get.. Would Dr.Bragg let him contact her if needed in the future and would he (and she after awhile?) be willing?
4. I really don't want to need any of my Providers help or to have to go to them but whoever I pick has to be willing to listen, to work as Team and to work with my other Providers.
5. As important to me, can I keep Dr.Bragg's Team - this may sound odd (I don't know) but I've had several Providers who where decent but their Staff sucked (when even other of my Providers said as much, you know it's not great then).
Being perfectly honest I really hope I don't have to teach a whole new Team (Nurses, NP, Secretary) that i'm not tying to be impossible but my schedule can be impossible to coordinate (various Providers schedules and in different Cities re Appts/ERT, life).
- Her Team knowing what goes in to coord.  surgeries, Adurazyme in-pt, etc, I really don't want to give that up, I like all of them. 
The Team now is golden at this so I guess I am going to ask Dr.Bragg can we meet together  w the former Resident and would there be any way we could talk to the Fellow in Canada who is coming (can't hurt to ask)?

 I know she's  said she thought  the Canada guy was nice but 1. Sometimes Dr's are different to each other then they are to Patients. ..Just about any complex Patient will say this. 
Would it help if we could talk to the coming Fellow to? 
As far as him it really, really comes down to wanting to keep her Team and I don't know how that could/or would work w the  now Attending whose worked w Dr.Bragg..

Needless if it's not already evident I am worried about all this, worried about things going back to how they where before I began seeing Dr.Bragg almost 5yrs ago.

I guess other reasons I am wanting to do as much as I can before Dr.Bragg moves is to try to figure this all out as much as possible with whisper i pick for a new dr. to try and make sure it  will really work..
As far as my trying to sort this as much as possible  with Dr.Bragg includes I trust her and I know how bad thins went when I'd been given her Partners name and been referred there prior to Dr.Bragg being at UW. ---
2. A whole bunch of my (former) Dr's had talked to her current Partner way back when and I even emailed w him prior to the Appt and yet that Appt was near a disaster from my stand pt. The 1 and only over I've ever walked out on. I don't ever want that to occur again.

3 Some have suggested I try the Former Resident-Current Attending and if it didn't seem to mesh I could always switch to the other new guy when he comes.     I've thought about this, the only worry is Dr.Bragg  will already be in AZ by then and I feel like I need her help to go over w my history/her impressions w/any new doc? I don't know how to do this 1, guess I need to talk to her some more about this possibility..

Not sure yet! I guess I really do need to start writing down questions to ask Dr.Bragg and/or to ask her and the other docs.

Some of the things I will miss most once she is really gone:
If I was in/going to the ER I could let Dr Bragg know and she'd  coord it all. I hope this will be the case w whoever the new doc becomes ( in new Teams case, whoever I pick let their Team know ).

Above all I hope whoever I/we chose will realize I don't want to need them but since I do  can we make a Team and work together well. Can they just respect I don't want them but do or will need them so can we figure this out together and can they be persistent (not give up)  as Dr.Bragg has always been... THIS is the part that most scares me  actually! 

After  my Appt in Madison Weds w/Dr.Bragg, I felt good from a Headache standpt (I slept pretty good Weds night to, yay!) I stopped at Hobby Lobby and HyVee since I was feeling good.

 At Hobby Lobby I found a few new crafts for Sun School which is always fun, lol.  I think it's quite possible I enjoy finding different craft ideas to much =) - I needed a little cheering up though in general (no real reason). :) Afterwards due to it being Lent I went to the late afternoon Service at Church which Lent is my favorite time of the Church Season no matter (reminder there's better to come thanks to Christ giving  his life for our/my sins; his selfess act) and ultimate Resurrection - a new beginning I guess really. 

Anyways it is nice (atleast for me) to be able to be in Church during that midwk Service these past few wks and be reminded as hard as things have felt lately, not feeling the best there is a so much better place one day.

The reminder to me during Lent of what was given for me despite my many sins is a reminder there is a  place where pain just won't be, where I'll feel better, free  of feeling these heart, shunt and any other issues one day. It's a reminder I am grateful for personally! I know it's not right for everyone but I am  grateful for my faith.

I truly believe everyone should have their own rights, beliefs and practices but I am grateful for what I have as it helps.

 If you believe in prayer please say one we can figure this shunt and heart stuff out if it be God's  will. 

Thanks for stopping by,


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