Monday, May 19, 2014

Hard to explain; a little depressed, MPS really stinks.

I can't really explain why but I have felt a little depressed the past few days (unusual for me, usually even in the worst of moments I am able to find something good) I guess maybe because physically I don't feel great and even with the new med a few wks ago and adjustment to this dose last week (cardiac med, digoxin) I still feel short of breath often (not a typical I've just walked a long distance SOB but a feeling like your trying to get enough or better air) and is occurring often. No matter how much I sleep I still feel tired and feel worn out (in a tired way) which kind of stinks as some of these nights I've slept close to 10-12hrs and so shouldn't be tired.
Headaches which I am very positive are un-related to the breathing thing and which where really good for a few wks have been an issue again which is a little depressing to. I've written many times about my apprehension at asking providers for help/telling providers when issues are recurring yet again and I am sure that is likely part of why I feel a little down.
I don't know, I guess maybe i'll just never get used to asking other people but especially providers for help and in a case like this where it is 2 different things it is really getting to me.

I think the cardiac stuff is depressing b/c not only did we just do the 2 OHS (open heart surgeries) less than a year ago (July and Sept) but then in Febr. the 2nd valve that has been an issue (mild issue w stenosis and leaking) for years showed it has worsened (moderate narrowing/leaking) and symptoms where mildly occurring again around that time, worsening still more since. then.
Hopefully meds will slow down or stop the valve from getting worse for many years but at the same time the way these symptoms are is frustrating and not at all awesome considering it was less than a year ago we had just got rid of the very same thing by treating (replacing) the aortic valve.
I am hopeful the new med (digoxin) will eventually work better to slow down heart rate which Dr.Earing had said he was a little surprised it was still in the range it was as many months out from the OHS's as we where. My hope is the beta blocker, digoxin and 2 meds (diuretics) will help to get fluid off, will help slow heart rate down so the heart has more time to rest in between each heart beat and thus not as much effort being forced on the mitral valve-the valve we are trying to avoid having to replace for as long as possible.

Side effects of the Coumadin are already a-plenty so I don't look forward to the day we'll have to use an even higher dose of this to get INR in to an even higher range. On one hand I really, really want to avoid replacing the mitral valve (the higher Coumadin dose, higher side effects as well as I am sure a 3rd OHS would be it's own issues) and on the other hand I just want these stupid breathing issues to go away, preferably without surgery would be great. Thankfully at this point we aren't yet looking at another OHS and Dr.E will do his best to avoid it as long as we can.
I can only control so much of this right now so just do what I can (meds wise, INR mngnmt) to avoid more surgery and am choosing to not worry now but that said it doesn't mean the symptoms don't bother me and doesn't mean I wish I didn't feel as crappy/do wish I felt better! (INR has been out of range since the last surgery the end of March though was close to target range 1 or 2 times. I re-test again next wk before ERT).
I also f/up with Cardiology from the Digoxin first being added a month ago next Thurs (28th I think). Dr.Earing per Nancy, the NP did opt to increase this dose last Monday to double as heart rate was still in the high 90's as he is still aiming for under 70 (briefly mentioned above).

Headaches are just depressing, it literally feels like a never ending cycle, we get in a good place but it never seems to last long and no matter that I know it's really something with the shunts I still feel questionably crazy b/c the nights are on/off bad and mornings-for the first few I feel as if I am in a daze with a clamp or pressure or something over my entire head. This all slowly (crazy I know) melts away generally in a few hrs., somedays quicker than others and almost always gone by the time I am around anyone.

I didn't know her super well and had only met her once (in our rare disease, MPS community some times you are closer to the people you never meet or only meet once then to the people you meet often though) but this morning a friend of mine, who was just a few years younger than me and who also had MPS I (in her mid-20's, post-transplant for MPS I-H) passed away unexpectedly from an otherwise not that out of the ordinary surgery.
Stacy was someone who had also been through OHS so although we had different types of valves (she tissue, myself mechanical) we would talk about this and about other things related to our MPS. What i'll especially think of and remember her for is she also adored cats and we would share pictures with each other (those photo posts) of different cat memes/posters we each saw on fb.

Sometimes you literally, almost can forget that MPS is a life threatening, all encompassing disorder and then you wake up one day or log on to fb one day and see a friend, so close in age to your own un-expectedly passed away and it is like a cold, slap in the face.
I am glad to have known Stacy the little that I did and for her family, well they will be in my prayers as I can't imagine the pain her Mom (who is especially sweet) and her family are feeling tonight. Godspeed Stacy, while the earthly loss is great, your heavenly gain is beyond anything, any of us can imagine!

There are other things bothering me but some of these are more to do with people and things I just need to think about and figure out. I am really grateful to those who are there through my good days, my crabby days and to whom the MPS/medical stuff isn't who I am but they also realize my life isn't like the average, typical persons and still are there. Thank you if you are reading this!

I am sure I will buck up and cheer up one of these days, for now thanks for stopping by and thanks for following.


No comments:

Post a Comment