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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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!

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 😉 ) 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.

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!!!

Asthma Action Plans. . .

September 25, 2009

ok,
as much as I believe in asthma action plans professionally, I’m not really going to preach them from that angle, other than to say that they are a really good thing. . . duh! (Although I do believe I’d see alot less asthmatics in the ER if AAP’s were used and followed more)

what is an asthma action plan: its a guideline that you as the patient and your asthma doc work on together, this guideline tells you how and when to take your meds, when to increase your meds, and when you should call your doctor or go to the ER. it generally consists of “Zones” color coded like a traffic light, alot of times there are peak flow numbers and symptoms for each zone, and sometimes its just based on symptoms, each zone has its own list of medications and instructions to follow that tell you when to change zones and when to call the dr or go to the ER.

why are they a really good thing? well, I’ll explain from experience. . . when I was first diagnosed with asthma I didnt have an action plan, every move I made with my asthma treatment I had to call my Dr’s office and either talk to someone or go in to be seen, leading to delays in treatment, and ending up on oral steroids a few times, and lots and lots of frustration that comes from trying to get appts and make phonecalls to increase or change my meds to get things under control. and on top of that I was always wondering when I should call my doc, and dealing with the stress of not knowing what I should do, and not having any control of the situation. . .

Since I’ve had my action plan I have used it once, my asthma doc says that its hard to tell how it works till its been in place 6 months to a year, the one time I did use it I loved it, it made life alot easier, and best yet, I got ahead of things before they got bad, and only needed to “yellow zone” for 2 days. . . it could have been much worse, I’ve ended up on prednisone a few times for letting things stew too long. . .

So, whats my asthma action plan?
I have moderate persistant asthma, my triggers are upper respiratory infections, smoke (cigarette and other) fumes like paint or chemical, construction dust and stuff like that, and exercise and stress.

Green: PF of 400 and up
And/Or
Symptoms: NO symptoms (coughing, tight chest, shortness of breath {I dont really wheeze unless I am really bad off})

Meds: Symbicort 160/4.5 2 puffs twice a day, singulair 10 mg daily, and xopenex inhaler 2 puffs or neb 1.25 mg neb every 4 hours as needed

Yellow: PF 250-400
And/Or
Symptoms: any symptoms what so ever, first sign of cold or upper respiratory infection

Meds: symbicort 160/4.5 2 puffs twice daily, singulair 10 mg daily, xopenex inhaler 2 puffs or neb 1.25 mg every 4 hrs scheduled, and either pulmicort flexhaler 180 mcg 2 puffs 4 times a day or 1 mg pulmicort nebulized twice a day

Red: PF<250
And/Or
Symptoms: worsening symptoms dispite treatment or symptoms staying the same after 24-48 hours of treatment

Meds: Yellow Zone Meds plus 60 mg prednisone daily x 5 days
Call MD, go to ER if need be

so, whats your action plan? any success stories? any advice? any questions?

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. . .

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. . .