Monday, August 13, 2012

Patients for a Moment: How I Roll

I missed the deadline for the August Patients for a Moment blog carnival, but decided to go ahead and post my answer up anyway because I was halfway through writing it when I lost track of time. Oh, well! PFAM is hosted this month by Duncan Cross. This month the theme is:

'How do you roll?’ What do you have to do to travel or just get around?

Well, Duncan, I am so glad you asked that. I am told rather often that I travel on a fairly frequent basis and throughout the years I have had to adjust how I prepare for travel, not just for flights but on a day to day basis. So I'm going to break down both and talk about what I have to go through in order to get around.


The Practical 
- I fly with what is called a Patient Passport (or something akin to that) A little booklet given out by the Adults with Congenital Heart Defects Association for patients to fill out - medicines, doctors, emergency contacts, allergies, etc. It's very handy to have that all in one orderly little book.

- I also carry my cardiac USB which contains updated .pdf files on all of my latest tests, plus physician notes and a brief rundown of my surgical history. 

- Before I travel overseas I have to get my pacemaker adjusted. This last trip to Ireland put me in a sour patch with my pacemaker clinic because I gave them oh, 24 hours before I came in. 

- Medicines all have to be readily available for the amount of time I spending away from home. This isn't typically an issue save for one medicine, which I cannot have on auto-refill and therefore only strictly receive once a month. I'm fortunate it is not a life or death pill as I have had to forgo a few doses until I reached home.

- I always take care to wear my medical ID bracelet (which looks like a charm bracelet to the undisciplined eye) so if I am stopped by a prying, overzealous employee I have something easily accessible to show that I am indeed deserving of priority seating (or whatever 'perk' it is to be born with a wonky heart). A female Delta agent at JFK has been the only individual to have stopped me in a loud, brutish manner that left me a bit bristled, but otherwise people have accepted me at face value.

Mental, Emotional, Attitude
- I usually try to prepare my hostesses/hosts as best I can without totally frightening them and having them think I am very fragile. I am so desensitized that I can easily forget how scary my heart health can appear to a person with minimal exposure to Professional Patients such as myself. It's pertinent to understand, though, that I would never, ever travel if I were in a poor health. I don't play games with my health.

I am one of the fortunate people - not just an individual living with a piece of machinery implanted in my body - but overall one lucky lady to have had 95% positive experiences with the TSA. 
The first thing I arm myself with going through security is a cheerful, almost apologetic disposition. I've only had deal with 2 pushy TSA agents overselling the microwaves (Sea-Tac, I am looking at you) but they're generally quick to adhere my request for pat-down (side note: As of yet, I've never felt scandalized or sexual harassed by the pat-down. I am sorry if you have had less than proper humane experiences!) When the female agent comes over I make sure to apologize for the inconvenience and ask her how her morning/day is going. Seeing that I am not agitated or in a hurry seems to make the process go a lot smoother. Do I need to apologize? No, of course not; it's a silly system with a deplorable lack of common sense and humanity. However, I'm willing to put on a smile for the sake of peace. I'm not so blind and self-assured that I believe this is how all of my experiences will be in the future, but I don't see any reason to deter from this routine as of yet.

- Though I do not engage in risky behavior even at home, this goes for double when I am travelling. I hardly drink, I try my best to put in at least 8 hours of sleep each night to ward off illness caused by fatigue and I take heed of my physical limits (e.g. no rock climbing, excessive running, etc.) Listening to my body is never more important than when I am away from home and TEAM RACHAEL!

Day to Day Travel

I do not drive. I quite possibly will never drive, though I waffle with the idea at least trying out for my motorcycle license so I can putt around on a Vespa or of the like. I won't lie; it's tough getting around day to day in a city that is:
A) Incredibly spread out
B) Not up to snuff with efficient, accessible, reliable public transit as a leading large city ought to be.

I started regularly patronizing public transit when I was thirteen, so in the subsequent 17 years I have fairly mastered the system and can maneuver myself around as needed, albeit within the parameters that Metro has given the public.

Taking my health into consideration when I venture out is second nature to me, and variables that I factor in are usually:

- energy level (recognizing and respecting my own energy level is easily the top factor in gauging if I am going to be venturing out. Even if I am desperate to go run some much-needed errands or meet up with friends for some fun, I have had to learn not to push myself)

weather (if it's too hot, I know I won't be taking any buses more than a block or two away)

- germs (If I've been ill I try to wait until my immune system has time to rest before using public transit. I try to carry anti-bacterial hand gel with me whenever I travel, though)

There are so many factors into using Los Angeles public transit that has nothing to do with my health, though, so I'll stop before I go on a tangent. 

Wherever I go, whatever I do ~ I always carry my hot pink sparkly heart-shaped pill box, complete with two large compartments (for AM/PM medicine) and an easy chain to secure it on an inside zipper pull. Just because I am a Professional Patient doesn't mean I can't do it in style!

Thursday, August 9, 2012

Liver Biopsy Results

Technically, I received this phone call last week, but being of a superstitious nature, I waited a full week to share this with everyone because the cardiologist who read my test results was not Dr. Evil, my cardiologist. Dr. Evil was out of town, so Dr. Not-My-Cardiologist was filling in. It's not as if Dr. Not-My-Cardiologist isn't a fully qualified medical professional, he's just not on my team and therefore I am uncomfortable with him making judgment calls on my health.
So I said to TEAM RACHAEL!, "Get back to me when The Man has had a look at it. I'm not telling the internet I'm all puppies and unicorns until I hear it from him. Not that I don't trust your man there, but, let's be real: I don't trust your man there like."

I'm so happy TEAM RACHAEL! understands my use of the English language.

He did and confirmed what I had already been told: No signs of cirrhosis, not even a significant amount of fibrosis (unsure if I am using the proper term here, but essentially not a lot of scarring)

My liver is functioning the best it possibly can and is as healthy as can be.

Superb news indeed.

Now pass me the sangria.