Wednesday, January 1, 2014

Happy 2014!

I did get released Sunday early afternoon which was nice and home in time to run to the store, from there I had time to stop at my Apt. Although I might have been a little crazy to do so given how tired I was then went to a Church Committee meeting which we where holding at one of the Restaurants here in town.

Today (written Mon) as much as I'd have liked to sleep in I went to ERT (Infusion) at CHW in Milw. and was atleast able to get caught up on most phone calls and paperwork. I guess I had noticed it already a little last night but I was retaining fluid quite a bit worse this morning, socks and pants that normally are loose and comfortable I couldn't even fasten or get on. I had one pair of slip on shoes I could wear-on one of the coldest days of the year! Per Dr.Bragg and what Cardiology had told her I had to call Cardiology regarding INR mngmt and so let them know about the fluid retention. The initial Nurse I talked to wasn't one of my normal Team's so she just took down the info (she was familiar with my case) and said to let them know if it got worse. My Infusion Nurse saw the fluid retention later and told me I should call them back and she was concerned in which case I called my Cardiologist's Nurse's # and talked to her. She told me a few things to do and not do and said she would plan to call me in the morning to see if it was any improvement, would alert my Cardiologist and if it hadn't improved or got worse I should plan to see them on Thurs when I am already at CHW for Labs. - I am hoping the fluid overload (more retention I guess since we didn't use that much fluid when I was in-pt) just improves on it's own! I already pee a freakin enough and not really wanting to take more diuretic than I do already! The Nurses did all say they would likely have the Holter monitor results on Thurs to (they thought maybe Dr.Earing would decide what if anything he wanted to do differently).
Dec 31, 2013
Jane, Dr.Earing's Nurse did call today and bc fluid seems a little better she just said I should wear the ted stockings (compression stockings) and if this got any worse page Dr.Earing who is on-call on New Year's Day. Otherwise they will call me with the INR results after I go to the Lab (at their hospital) Thurs and will fup on how symptoms are. She mentioned again they would hopefully have results on the Holter and an idea on the heart rate then. I really think it is just overly high which isn't un-common after heart surgery but Dr.Earing had also said he didn't want this to be occurring for long periods of time which it does tend to do (a mix of long and shorter periods of rapid heart rate). Anyways we'll see I guess.

The (shunt) head incision site continues to be a pain, literally. I am just simply amazed by how uncomfortable this area has been since surgery! - Adding to this post today (Tues), New Year Eve (wow!) I can say the site has been a little more comfortable, isn't as uncomfortable thankfully. The big things that make it painful include washing it (barely touching the areas around the incision!), dressing/un-dressing, simple things like the wind outside and as well simple things like bending down or exaggerated facial movements. So odd and so different than most other head surgeries. As I think I wrote in my post-surgery update though Dr.Bragg wasn't surprised by this and said given what she had to do it didn't surprise her.
I hadn't thought of it till now, but with Dr.Bragg doing the Thoracic shunt surgery revision as well as the VP shunt surgery on the 14th I wonder if she is still planning to use a Peds General Surgeon? I guess I will find out closer to then! Not really something that matters much either way to those of you reading this either I am sure! =)
I did not hear back from the Nurse (her partners Nurse) regarding the Fup Dr.Bragg wanted later this week so i'll have to call her Secretary on Thurs and see if this can be done on Fri as Thurs I have to go to Milw for Labs and other things. I might also see about temporarily starting back to Cardiac Rehab as they had said to just let them know when I was out of the hospital and felt up to coming back; I had figured I would maybe be able come back temporarily for a week or two between this last incision-closure surgery and the actual 2 shunts being revised surgery the 14th. I'll see how I feel Thurs though and then talk to the clinic.
I also emailed with Dr.Bragg's one NP Sue and she is going to check in to my receiving the Aldurazyme infusion when I am re-admitted the 13th for surgery on the 14th. Since I normally get infused on Monday's I would otherwise miss that week. She is out of the office till next Monday so said she would talk to Pharmacy then and get back to me with what they have to say. I am glad Dr.Bragg's office is always so willing to atleast try to get this figured out, chances are if we can't get it for that Monday they will order it for say Weds of that week.
Otherwise it seems hard to believe as I literally feel like I was just writing this type of post a year ago but it's a New Year (16minutes in to be exact at this moment!) and I can't help but wonder what this year will bring? Clearly one shunt surgery and I am going to the World-Lysosomal Meeting in San Diego (Febr) to help the Foundation I work with (Awesome!!!), as well as partnering w Jessi Colund of Genzyme for the Boston Marathon again but other than that I am not venturing any guesses (on med stuff) as I made that mistake last year and although I am not superstitious I cant help but feel like sometimes maybe thinking one way means the opposite is more likely to occur (ie I honestly thought I'd con't to be fine from a heart stand-pt, I don't think I thought id have that much issue w shunts although in general we did find some answers on that front) and just overall many things I wondered about at this time last year where the opposite!
In any case this is what I wrote/shared on facebook:
I remember writing last year that I thought 2013 couldn't hardly trump 2012 (as far as medical stuff) which this yr pretty much did.. (Hard to believe) so instead this year I am just going to say:
1. I hope to Con't to have my Faith.
2. I hope I don't ever take for granted the Providers I have; that the good ones con't to help w my Care.
3. I'll con't to learn to accept the things and people I can't change.
4. Adversely that the Family and Friends who mean so much know despite my sometimes opinionated self they mean the world to me! The Family and Friends who support me in all the surgeries can't possibly know how much that means!

Thanks for stopping by,
Happy New Year!


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