Oops! False Alarm!

October 16, 2010

oops,

I guess we were better safe than sorry to watch things as a precaution, but things are looking better. My blood work came back normal (no white blood cell count), I havent had a fever in a couple days, and I’m starting to feel a little better. I’m still watching things cautiously, but more than likely I dodged this bullet. This was probably some stupid viral syndrome. Thank god it didnt go further. Endocarditis is one thing I hope I’ll never run into! If I do, I’m glad I can work with my dr’s, nurses, and health care professionals and we know what to look for and when to pull the trigger. I’m really glad we waited, if we hadn’t that could have been one hell of a big workup, EKG, Echo, Chest X-Ray, Blood Cultures, etc, etc, really happy I dont have to spend my weekend dealing with all that stuff!

anyways,

off to bed now!

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BACH

February 2, 2010

Well….

I’m not talking classical music 😉

alot is going on right now, I’ve been having some funky symptoms more than usual lately, palpitations, shortness of breath (different than the asthma kind) and tiredness, its kinda messing with things, could be from my over zealous night shift schedule, but it could be something going on with my heart. As an ACHD patient, I cant just ignore these symptoms, it could be something serious

after some thought and looking over my records from my current cardiologist, I’m not satisfied with the care I am getting locally, this this stems partially from the  fact that he mentioned some new diagnoses at the last appointment and never explained them, so I’m a little nervous about that, as well as the bedside manner he has shown (not giving me much time to ask questions, feeling sort of intimidated sometimes), this along with some issues I’ve found in my records, and the fact that there is no local 100% ACHD doctor or surgeon, they all see adults with acquired diseases like coronary artery disease as well as ACHD patients has made me look further.

I am going back to boston, where I originally had my surgeries as a baby. this is actually the #1 ACHD center in the country, so strangely enough I’m as excited as I am nervous. I’ve got alot of questions, if in fact, as Dr. VT ACHD cardio says, I do have shones syndrome, according to the bethesda guidelines I need to be seen every year anyways…

so, I’m in the process of coming up with a list of questions, its a little weird to be going back to boston for me on one hand, on the other I’m excited to get some real answers, and have someone listen to me and answer my questions. as it stands now, I’m really not sure what’s going on with that ticker of mine, and I’m not sure what “shones syndrome” and “parachute mitral valve” imply, so those are at the top of my list of questions. any other suggestions????

I just wanted to keep in touch and let you all know what was up….

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

(Thanks Kerri)
Not too long ago, I was part of the outer world. This outer world is a place where every breath comes easily, and you’ll cough and sneeze and sniffle your way through a cold, complaining all the while about how sick you are. The outer world is a place where you can run out of your house, go for a run, and come back a little tired, but after about five minutes, you’ll be no worse for the wear. The outer world is also the place where asthma is just a blue inhaler. That’s all you ever see, right? The blue inhaler. You don’t even know what it’s called, but, you know people with that foreign, but common and controllable lung disease called asthma take them from time to time to help them breathe.

Now I am in a world that coexists with the outer world. It is separate, but mingles with this world in a way that only a subset of people can understand. I am no different, but at the same time, I am different in one way, that is very small and very large at the same time.

My name is Kerri, and I’m a university student in Canada, studying Education and human development. And, like 1 in 10 people in my country, on a daily basis, I deal with asthma.

Okay, one in ten people? Makes you think you’re in good company, right? But when you’re one persistent asthmatic in a sea of intermittent asthmatics, the world seems very different. Thinking of my friends from high school who have asthma, only one is on control medications, and is very well controlled on FloVent. Two of the other ones rarely even have Ventolin with them.

When I was diagnosed? I thought it wouldn’t bee too difficult. The doctor had told me; “Take some Ventolin, you’ll be fine!”. Several months later of taking 6-8 puffs of Ventolin a day, I embarked on the journey of control medications. And seriously? Sitting among your fellow asthmatics with your Symbicort and your Singulair and your Ventolin and AeroChamber and Benadryl and Reactine and peak flow meter in your bag, when they don’t even have a Ventolin in their pocket? Gets frustrating—especially when things aren’t working, and you just watch your intermittent asthmatic friends run around (and occasionally borrow your Ventolin, because theirs is lost/expired/at home) without a second thought given to their breathing because they flare so infrequently they don’t have to think about it, is hard. (Okay, I’m not ragging on the intermittent asthmatics, okay? I’m happy that their asthma is so well controlled so easily. Keep reading, you’ll see what I mean). It’s WAY harder than looking at the people with good lungs do it. Because you, at this point, start to wonder “Okay, what am I doing wrong? Why am I on all this medication, and still feeling like crap? Why are my lungs so touchy?”

So, you search for someone who gets you. And in this day and age, you probably ended up on Google, because, let’s face it; we think it can solve every problem we face in life. Well, not quite, but it can at least give us some answers.

And maybe Google ended up bringing you into a place where the outer world of the Internet grabbed you, and sucked you into this new inner world, full of people like you. People who not only know what an AeroChamber is, but actually use one, too. People who know that a peak flow under 80% is called the “yellow zone”. And, people who, at times, are as frustrated by asthma as you are, or even more-so. And they GET IT. They share frustration with you when things get rough, and elation with you when you’ve been breathing well, whether it’s been for an hour, a week, or a month. And some of them are the best of both worlds, and are both asthmatics AND medical professionals, specifically respiratory therapists.

After awhile, these people become more than blog readers, or blog writers, or twiends (twitter friends), or people you touch base with on social networking sites. They become a community. If you are going through a bad patch, they post comments on your blog, and send you e-mails and tell you to get on MSN so you can vent to them and they can know what’s up, or pop up on your Facebook chat, or Gmail chat. The link is formed because of asthma, but goes so much deeper so that you know their major in university, or their goals, or even their siblings names. You become friends.

We become friends because we deal with a frustrating lung disease on a daily basis. We stay friends because we begin to genuinely care about each other. I feel blessed to be a part of this awesome community of awesome people who just happen to have lungs who are anywhere from a little to a lot crazier than “normal” . . . And some of us? Even without asthma, we’d be a little or a lot crazier than “normal”, too!

(Also, I want to thank Morgan for inviting me to guest post here on From Either Side of the Gurney—thanks, Morgan! Oh, and see how I played on Morgan’s blog title? I suck at coming up with titles, that’s why I played off of hers . . .)

Dreams. . .

September 27, 2009

Woah,
I woke up out of a dream at about 5:30 AM this morning, and couldnt get back to sleep, I was dreaming that I was in a hospital in preop and they were about to do open heart surgery on me, I was asking for something to calm me down, I remember being in pain and being scared, and they were starting IVs and stuff, last thing I remember before I woke up was being rolled into the OR, and seeing everything thats going on, they inserted an arterial line, and I remember the anesthesiologist putting the mask on my face, and I woke up.

I’ve had a few different connotations of this dream, waking up from surgery looking for a new scar (to the point where I actually wake up in real life looking for a new scar), dreams of my ablation procedure, dreams of Dr’s appts, usually cardiology appts, etc

what do you suppose this is from? I’m guessing it’s my brain subconsciously relaying fears or reliving experiences. . . whatever it is its kinda disturbing. . . and I have a feeling its not going to stop any time soon. . . gotta love it!!!

A Day in the Life. . .

September 20, 2009

well,
I promised to explain how much of an impact all this has on my day to day life. . . and honestly I dont have a whole lot to explain, really! I’m usually not big on advertising my weaknesses, so this is really hard to do. Like anyone who has chronic illnesses I’ve been really good at making tiny changes in life to accomodate the little quirks I have, which has made my “quirks” pretty much imperceptible to the people around me, and actually, alot of times I dont realize that I am having them either.

Day to day, I really dont have many cardiac symptoms, and actually, its gotten to the point that they are second nature, and I dont even recognise them alot of times. the biggest reminder I have is the relatively visable scar on my chest, and the reactions it sometimes gets from people around me, although I will get the occasional skipped beat or two, or the occasional run of ventricular bigeminy, which are no more than an annoying, inconsequential reminder that my heart is tempermental, and it’s got a mind of its own. Rarely I’ll notice that I’ve overdone it and am really exhausted, or have some shortness of breath when I am excersising really hard, and half the time I can figure out some other explanation for why I am feeling the way I am (Denial? maybe. . . ) besides the occasional symptoms and my scar I dont have any meds to take, and I’ve only got the occasional doctors appt for heart related stuff, and the occasional memory or two, basically, I usually dont have to deal with my heart on a day to day basis, and alot of the time, other than seeing my scar in the mirror I forget about it totally. . . its stable for now, no need to dwell, its gonna cause more issues down the road, but I’m gonna enjoy being fairly bored with it for now…

My asthma though is another story, the biggest daily impact is taking my meds. I dont have daily symptoms most of the time, and usually when I do they are cough, chest tightness, and shortness of breath, I usually have my worst symptoms when I am sick with an upper respiratory infection, and sometimes I have chest tightness when I am excersising, the other impact that asthma has on my life is monthly trips to the pharmacy, the bills that come along with it, and making sure that I have enough of my meds all the time, and have a couple backup inhalers of xopenex, and of course followup appts that go along with managing asthma. Like any other asthmatic though I think I am able to ignore my symptoms well, and dont even notice them alot of times, and alot of times I play tough till its too late and things are much harder to get in control. . . its hard for me to tell how much my heart symptoms and asthma symptoms play off from each other and make things seem worse sometimes, but whatever, thats irrelevant

other than that, its hard to explain the total impact chronic illness has on my life in one post without it sounding alot worse than it really is, because the issues are so dynamic, changing daily, heck, my biggest beef with chronic illness is the unknown of it all, my heart could be stable for the next 25 years, or I could need a double valve replacement within a week from now and I wouldnt know that today by how I am feeling or doing, my asthma might be fine today, but tomorrow I could catch a cold or the flu and be sucking down 3 or 4 neb treatments a day, so I just have to live day to day

and now that this has rambled on for ages I am going to go chill out. . .

eh,

I’m going to tempt the fates by saying this, but I went off the dilt cold turky on saturday. . . and it could be better, but it hasnt been too bad! I’ve had a few short spells, less than a minute or two or five 😉 of tachycardia at a time, few more than normal random palpitations, and one crazy headache saturday evening (questioning if its from not taking the dilt or not) but other than that I’m kinda sorta almost wondering why I am going in for the procedure on thursday, I know as soon as I start wondering I’ll have something kick me back to reality, but still!!! I only have 2 days left and life is good, I could get used to not swallowing that horse pill! I just hope they are able to induce this thing on thursday, the fact that I havent really had much going on makes me nervous almost, really, I know, they’ll get it! I have to remember, before I went on the dilt I’d have a week or two at a time without anything crazy happen, then it would hit me all at once. . .  and it knocked me flat on my ass a few times, literally! so we’ll see how the next two days are, I’m pretty sure they’ll be able to get it, its just finiky!

 

clinical, thats another story, speaking of tempting fates! seems like today putting my sills advanced RT exam prep guide on the front seat of my car was enough to piss Murphy off. . . today started out with a couple RSV slides in the ER and it went from there, the neonatal ICU was Nutz with a capitol N, on the way up there we got called to a code 99, someone passed out in one of the outpatient clinics, and no one was able to find them, so we get there to find that everything’s ok, and after the 10 mins we spent searching for the code they didnt really need us anyways. . .  we head down to the basement to get some equipment for the ER, bring it down and on the way back from  the ER I saw my EP doc. . . so much for forgetting about my procedure while I’m at clinical, so then we head back up to the NICU to help the therapists up there out (they had to attend a birth of a 26 week preemie) and I see my pediatric cardiologist! holy crap! little freaky seeing him in the clinical aspect of things, no matter how many times I’ve seen him outside of being in his office to see him (even after I’ve switched to an adult cardiologist). . . so, while we are covering NICU we get called to the ER for an intubation. . . eh, we’re stuck up here with a bunch of sick babies on ventilators! so my preceptor calls another therapist to go cover, by the time we got to the ER the guy was intubated, and they were doing an endoscopy, they guy bled out almost 2 liters out of his esophagus! holy cow! by the time we stabilized this guy it was 10 of 3 and time for me to go! talk about a day!

 

moral of the story, I think I’ll grab the sills and put it back on the kitchen table before I leave in the AM!