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


Asthma Action Plans. . .

September 25, 2009

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
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
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
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?

OK, Lets Clarify a Few Things

September 18, 2009


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. . .