Feeling Like S#!%. . .

October 13, 2010

Hey,

Figured I’d post a quick update, I’m not one to be a downer but the last few days I’ve felt really crappy, just not quite right. I realized yesterday when I went to the Dr’s office that I’ve had a fever for going on 4 days now! Uggh. . . ¬†but other than just generally feeling blah, achy all over and not wanting to eat I cant figure out whats going on.

I have been to the dentist twice in the last two weeks, both times I took my pre-dental antibiotics, but considering my risk of endocarditis, this is the only thing I can think of thats causing me to feel so crappy.

So, back to the Dr’s appointment, they did some blood work, but other than the low grade fever and some pretty non-specific symptoms there’s nothing pointing in any specific direction. Hopefully we should get the results today and that should tell us where to go and what the next step is. Other than that, I am just going to lay low. Hopefully things will turn around soon!

I’ll post an update when I can!

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Oops,

Definitely lost track of things the end of last winter in the midst of my appointment at BACH coming up, and business at work and home, I’m hoping to get back into the whole blogging game, I really miss it!

The last post I wrote I had decided to visit the Boston Adult Congenital Heart Center, but hadn’t gotten my appointment yet. . .a lot has happened since then. . . A LOT!!! Getting the appointment was the least of it! Here’s a quick overview:

First, and one of the most exciting is that I bought a new car, a 2010 Volkswagen Tiguan, LOVE IT!!! (I guess the “trip to boston” posed a good excuse ūüėČ ) haven’t regretted it yet!

The next is that I got a kitten, Guinness needed a buddy, big time. (more like I needed guinness to get a buddy, BIG TIME! lots of energy with no-wheres to put it, not a good thing!)

The next was my appointment at BACH, that definitely deserves its own post, can we say “Holy Learning Experience, Batman!” I learned alot about myself, and my heart, and I even got to meet a new friend!

The late spring and early summer was full of exercising per my exercise prescription, and summer type stuff, not much happened, but yet, again I learned why not to get too heavy into exercising, I ended up over-doing it and starting to have tons of palpitations and getting overtired, promptly, after my umpteen millionth holter monitor turning up relatively negative I bailed on the exercise routine, and generally have felt better since. . .

all in all, the last 6-ish months have been very busy, but awesome! I’m hoping to keep up with the blogging, and get back to the exercising.

Round Here

October 16, 2009

One thing thats hard about asthma, and congenital heart disease is that they are “silent” diseases, no one really knows you have them, unless they pick out the little clues, the scar, the inhaler, the posture you take when you arent breathing so hot, this makes it hard for others to understand what its like to deal with, no one really “gets it” when you are having a bad day…even when you arent, people just seem to believe that they dont see it so it must not be that big a deal, and even if they do, its not that bad cause its not visable.

Most of the time this isnt a big deal, but sometimes it can really grate on you, one day, as I was getting ready to have my ablation in march I was listening to music, which is one of my favorite things to do, also seems to be very theraputic when I am dealing with crap…and I heard one of my favorite songs in a WHOLE new light (its amazing what a little perspective will give you) The song is Round Here by the Counting Crows, and parts of the song really hit home…

“Step out the front door like a ghost
into the fog where no one notices
the contrast of white on white.”

(having something invisible going on, no one gets it, the only indication is the scar, inhaler, etc)

“I walk in the air between the rain
through myself and back again
Where? I don’t know”

(while I’m doing my daily routine, especially when I am having a rough day I’m “in my head” alot trying to deal with the mental/emotional part of this, it hardly ever gets me anywheres, but its definitely a journey)

“Round here we always stand up straight
Round here something radiates”

(again, a picture of normalcy, busy doing day to day things, conforming to the norm and trying to give off positive vibes, again, if you arent positive, people around you tend to feel sorry for you)

“Round here we’re carving out our names
Round here we all look the same
Round here we talk just like lions
But we sacrifice like lambs”

(back then I was busy at school and work, trying to continue with the semester, getting ready to take my boards, now I’m day to day at work trying to become the best I can be, again, I look no different than any of my classmates and co-workers, and therefore am no different in most peoples eyes. I go to work every day, I advocate for my patient’s best interests, I try my hardest to be the best I can be, but sometimes I just cant be that all the time, sometimes I just need to break down and cry)

Round here hey man we got lots of time
Round here we’re never sent to bed early
and nobody makes us wait
Round here we stay up very, very, very, very late

Chronic illness can make you feel alone at times, especially when its silent, this lyric represents to me feeling alone in the school/work environment, but it also represents me having to take over my healthcare (no one’s running that show any more, I have to take it over myself {no one’s telling me how to do it anymore, “when to go to bed”})

“see i`m under the gun round here
oh man i said i`m under the gun round here
and i can`t see nothing, nothing round here.”

(I’m under alot of pressure day to day, needless to say, sometimes it’s hard to get perspective, sometimes its hard to see the forest for the trees, on the flipside, sometimes this helps alot when I’m not feeling well to be really busy, cause I can put my head down and just get it done, but that can lead to not taking care of myself, forgetting to take meds, not getting enough sleep, etc)

if this sounds sort of dark, its cause I first wrote this down when I was in a rough place, I was getting ready for my ablation and I was pretty scared, and felt really alone, I am in a much better place now that I’ve had my ablation, and things have stabilized, but I think its good to look back at some of the hard times sometimes to realize how far you’ve come, and I’m hoping I can help others by expressing some of the crap I’ve been through

OK, Lets Clarify a Few Things

September 18, 2009

Well,

I realized yesterday that I’ve posted a whole bunch of stuff related to my health, but havent actually mentioned¬†exactly what¬†I’ve got going on in that arena. . .

Its a long story, but I’ll start from the beginning. As I have mentioned before I was born with several congenital heart defects. 5 to be exact; a VSD or ventricular septal defect (hole between the bottom 2 chambers), bicuspid aortic valve (self explanatory, a normal one has 3 cusps), coarctation of the aorta (a crimp in the main vessel carrying blood out to my body), sub aortic stenosis (narrowing below my aortic valve) and mitral stenosis (narrowing of my mitral valve)

Needless to say, I was a pretty sick kid for a while, I was diagnosed with the CHDs in 1987 at about 2 mos of age, and I had my first open heart surgery in 1988 at about a year old to repair the VSD, they placed a dacron patch over the hole, which “fixed” that defect, in 1991, at about 4 years old I had surgery to resect the subaortic stenosis. after that my heart health stabilized, and I did really well through my childhood and teenage years, and continue to do really well, with the understanding that as any other person with CHDs, just because I’m “fixed” doesnt really mean I am totally fixed, I get regular followup so we can keep an eye on things and catch anything before it becomes a real issue. . .

I’m still at risk of having issues, the scars in my heart can cause issues with arrhythmias as I found out last year resulting in the need for a radiofrequency ablation for SVTs this past March. . . and I still have a couple of valves in my heart that dont work so well, that will eventually need to be fixed! I was given an approximate estimate of needing surgery 5-10 years down the road a couple years ago I’m determined not to let it get in the way of life in the mean time! Yesterday my adult congenital cardiologist cleared me for 2 years, I’m hoping the only reminder I have of these issues between now and 2011 is my zipper (sternotomy scars from my open heart surgeries)

Besides my cardiac issues in 2006 I had laparoscopic surgery for acid reflux, that I believe stems from when I was sick as a baby, this went really well, before the surgery I was on tons of meds and vomiting almost every day, and since the surgery I have not had any symptoms of acid reflux, and have been completely off all meds for acid reflux, WOO HOO!!! gotta love that!!! at this point I have basically forgotten about the whole thing, which is awesome!!!

More recently I have been diagnosed with asthma, I have had symptoms for at least the last 10 years that were chalked up to my heart, within the last 5 or 6 years I noticed that when I got colds they would settle in my chest, and last for a long time after some trial and error over the last 3 or 4 years things have settled out and I have finally been diagnosed by my new asthma doc with moderate persistant asthma, and set up with an asthma action plan,
my action plan:

green: PF 400 or better, no symptoms, symbicort 160/4.5 2 puffs twice a day, singulair, and xopenex inhaler or neb as needed, and pre exercise

yellow: PF 250-400, any symptoms, symbicort 2 puffs twice a day, singulair, xopenex inhaler or neb every 4 hours, and either pulmicort flexhaler 180 mcg 2 puffs four times a day, or pulmicort neb 1 mg twice a day

red: PF less than 250, worsening or same symptoms after 24 hrs of yellow zone, add 60 mg prednisone daily for 5 days and call MD, go to the ER if need be

right now things are pretty stable with my asthma, I end up using my inhaler usually about a couple times a week or less, and I feel pretty good, I have recently been in my yellow zone a couple weeks ago, but other than that life is good

Wow! thats a long post, as intimidating as this all sounds its really not all that big a deal, and it doesnt really make that big of an appearance in my day to day life. . .
tomorrow~ish I’ll write a post on how big an impact all this really has on my day to day life. . .

crazy week!

March 21, 2009

this week has been absolutely nuts!

for clinical I was with the charge therapist, and it was busy, and boring at the same time, a bipap in the ER and an RSV slide on a baby in the ER and helping out on the intensive care units(ICUs) pediatric ICU and surgical ICU were particularly busy this week, with pediatric ICU taking the cake! a bunch of really sick babies hanging around there this week, but otherwise basically a couple mundane days at clinical. . . running my ass off!!!

on tuesday I went out as a tradition with my mother, her boyfriend, and a couple friends to see a couple Irish bands play, we had a couple beers and ate some pizza. . . american flatbread is freaking awesome! all in all, it was an awesome night, I cant believe I caught a buzz off from a beer and a half though!

Thursday I had class and I did pretty damned good on the last test that I took, I got a 100! right now I am carrying a 96 in my cardiopulm disease class, woo hoo!

other than that things are pretty good went to costcos today, its amazing how fast you can spin through 200 bucks there!

Hopefully I took my last dose of diltiazem today. . . Whats that? oh yea, diltiazem or “dilt” is a calcium channel blocker, it slows the signals from the top of the heart to the bottom of the heart, basically (almost) preventing the arrhythmia that I am having. . . I said almost, that’s why I’m having the EPS and ablation. . . hopefully the next few days are not too bad, cause I have to stop the meds a few days ahead of time so they are able to start up the arrhythmia. . . during the procedure they actually have to cause the arrhythmia so they can map it and see where its coming from, this will help them figure out where to ablate it and stop it from happening, having meds on board to prevent the arrhythmia doesnt help this cause. . . problem is that I could have issues with having the arrhythmias again between now and then, I’m gonna keep my fingers crossed, hopefully it wont be too bad, hopefully its worth it and I’ll never have to touch the stuff again, I hate taking pills!

well, its time to go catch up on some Z’s may be the last chance I have to get a good nights sleep in a while!

 

 

well, its time to go catch up on some sleep

life summed up in one word right now: Distraction! Work, School, Music, Life! Wait! isnt that 5 words, damn, I digress already.

A little about me, My name is Morgan. I’m 22 years old. I’m a Respiratory Therapy student, soon to be graduate! I’m a respiratory therapy assistant at my local hospital, also working in the food service department in the meantime, I’m a music lover, I love to be with family,¬†I LOVE coffee (it definitely deserves its own food group), and beer for that matter,¬†I love to be outside, I’m a hard worker, and, eh,¬†I live with congenital heart disease every day of my life.

what’s up today?¬†Right now life is crazy, school is crazy, work is crazy, my car is filthy (I bet you couldnt count the number of respiratory books I’ve got in that little beetle on 2 hands! that might be why my gas mileage went down at the beginning of this semester) today I took a break, I chilled out this morning and took care of some odds and ends, I took my practice RRT exam and got an 82 without even doing the math! Woo hoo! I should be safe for this week as far as various extra stuff going on now, and I even got the grocery shopping done! It’s nice to have a couple days off, I havent seen two days off back to back in. . . eh. . . a really long time, I dont even remember! The next time I see that will be March 26th. . .

One of the reasons I started this blog, among many others, is to chronicle my experiences, one of the biggest things on my mind lately is my upcoming Electrophysiology study and Ablation, and one of the biggest things I have noticed in getting ready for this procedure is that there isnt enough information about the actual experience of going through it, so I was hoping to help some people by detaling what its like to actually go through it for people. Right now that means the mental and emotional preparations, its alot to deal with at any age, but being 22 years old, and being told they are gonna snake a catheter up from yor groin, into your heart, and burn pieces of your heart into submission is freaky! Add to that being a medical professional, I see shitty things happen every day, and as a respiratory therapist, most of what I see is when things go wrong. . . that results in some pretty funky head trips, I cant even explain some of the dreams I have had!

My answer: Distraction, its not hard to do with work and school, but my favorite form is music! My goal right now is to make myself a new playlist on i tunes, as someone who deals with medical appointments and stuff, I’ve learned one trick, given to me by a fellow adult congenital heart patient: reward yourself! so, thats what I’ve been doing, I’ve been buying new music on i tunes, I cant believe it, I still havent exhausted the list of music I like from the 90’s! that added to the pair of pajamas I bought to wear to the hospital, I should be all set! The trick is to keep at it between now and the 26th. . . shouldnt be too hard, I seem to be pretty good at it!

laters!