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.

TRAVELLING BY AIR

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
and
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!

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.

He ate the liver with some fava beans and a nice Chianti

When I checked in at UCLA Hospital via Foursquare I wrote, "They're eating my liver and drinking my blood!" I hope that made someone's day. When I was lying around in pre-op waiting for that blasted Moriarty! to show himself I jokingly said to my nurse Beatriz and mom, "He's going to eat my liver with some fava beans and a nice Chianti."
To which my mother replied, "Yuck! Chianti is too sweet! You want something dryer than that!"
Thus ruining my Silence of the Lambs joke but making me laughing my ass off nonetheless.

My procedure got pushed back by an hour and there was no television to watch or drawers to rifle through as I usually like to commit petty acts of larceny whenever I'm in for a few hours. I can always blame it on the loopy meds if I am caught.

So, I suppose I am doing that thing wherein I assume Everyone Important To Me Ever just automatically understands why I am having a liver biopsy but I've found myself having to explain over and over again. Time to just explain in blog format so I can impersonally redirect any inquiries to this post.

A long, long time ago (in a galaxy not so far, far away) I had a two-part procedure called The Norwood and The Fontan. It was in its, ah, third? revision phase at that time and my surgery was performed by the titular Dr. Norwood himself. In other words, I had the best surgery at the time, performed by the best guy who could have done the job.
One of the drawbacks to the Fontan, however, is that my pulmonary veins put pressure on my liver. My liver is slightly enlarged and extra sensitive because of this. TEAM RACHAEL! likes to keep an eye on my liver in addition to my heart because of the relation by surgery. We keep a lookout for erosion and cirrhosis. So far, external and on-invasive methods have come back with very reassuring results. However, the only way to truly know what's going on with a liver is to conduct a biopsy. Hence, yesterday's procedure.

I won't know my results for a little while yet but my cardiologist, ever two steps ahead of the game, sneaked in to take pulmonary function measures. My NP's swung by to visit when I was waking up and told me my function is "11" which I am told is the best it can possibly be. Good news to hear indeed!

I would be feeling a lot better right now if it weren't for my eyes, of all things. I was asked to forgo general anesthesia in favor of heavy sedation; meaning I'd be asleep-ish and so out of it that I'd have no knowledge of what was going on and would not feel or remember anything. In spite of its date-rapey overtones, I agreed so long as I'd not feel a damn thing including the numbing agents. The anesthesiologist was very professional, friendly and confident. True to form, I do not recall anything. However, when I came to, my eyes were in excruciating pain. Most likely this is because my eyes were open and sucking in all of that dry, artificial sterile air. Joy. So they're extra sensitive at the moment and I am carrying around eye drops to help along the re-hydration process.
Otherwise I have two incision sights:
1) Where the tube for the paracentesis went in on my right side, which is only tender if I attempt to sleep/lie on it.
 2) My neck, where they went in through a vein to fetch a piece of my liver. It really does look like a botched vampire attack. I secretly tell myself it was Louis Pointe du Lac; he grabbed me, tried to take a bite, realized he was fucking up and ran away in guilt and shame.

Thanks for your well wishes. I am looking forward to getting back to my regularly schedule of mindless cat videos and deadline avoidance.

So. We Meet Again, Moriarty.

Tomorrow morning I have an out-patient procedure scheduled with the nefarious Dr. Moriarty. During my last check-up with TEAM RACHAEL! in June I said I would be up for another paracentesis so long as I was, in layman's terms, knocked the fuck out. My cardiologist decided this was the perfect opportunity to exert his powers for evil and scheduled a liver biopsy as well.
These are not Bad Things or Shit We Need To Stress Over at the moment. The former is helping out the excess fluid that had accumulated after my November surgery and the latter is something that has been on the docket since around 2009. There was no evidence to suggest an urgent need for a biopsy, though, so the Doc has just been lying in wait (like a snake) for an opportunity like this to present itself. They first wanted to schedule it right away, at the end of June/beginning of July. I had personal business going on, however, and didn't need another source of stress piled on top of everything I've been dealing with. Additionally, I wanted to celebrate my birthday as well so it had to be scheduled afterward, hence tomorrow. Not exactly an ideal time regardless but better now than never.

I have to say, I am entering in this situation with a little bit more trepidation than I normally would for an outpatient procedure. Primarily my concerns stem from the last paracentesis which went down as one of the most painful experience of my life. That and the last time I was under anesthetic I woke up to find myself in months of blundering medical bullshit.

Regardless, I'm going through with it so wish me luck and a quick, efficient, virtually painless recovery.

Thirty Lessons in Thirty Years

Today I turn 30 years old. To some of you, birthdays aren't a big deal but to me they are Buddy Christ's way of saying, "You know what? Imma play your song. Top of the hour, every hour, for just one day. Get your groove on, girl."
Thirty is extra special given my health and the struggles I've gone through to keep afloat, as it were. People often (and sometimes condescendingly) congratulate me on, well, being alive. I more often than not wave off these accolades because hey, what the hell did I do? I'm just alive. If you want to go congratulate someone go shake the hands of every medical professional that bothered to take notes and give a damn. With some pensive pondering though I've come to associate endearments like 'brave' or 'courageous' in a way that I am sure wasn't intended but I will accept regardless. Survival is instinctual and I cannot take the credit for that, and general maintenance of my ticker is just par for the course as well - but the social aspect of living with a congenital heart defect? The twists and turns I have to make just to maneuver through this life? The hoops I have to jump through to succeed in any small way? The sacrifice of my own personal freedom for the sake of my health? Yes, I will accept those congratulations.

While thirty years may be the blink of an eye in the historical archive of humanity, I'd like to think I have had been on this planet in this life long enough to have learned some valuable lessons along the way. Not that I have stopped learning; no, no. I may not have completed college but I'm a lifelong student at The School of Life. Here's a sampling of what I've learned in 30 years:

1) I cannot change/help a person that does not want to be changed/help
Simultaneously the most obvious and difficult of lessons to learn, yet vital for every human being to be taught. I may have a heart the proverbial size of a whale, with the most earnest of intentions coursing through it, but if whomever my good intentions are aimed at does not ask for them, there is simply nothing I can do but let it be known I'm there when they need me, then walk away. It's painful; it will always be painful for me to go through this but I have learned the hard way that pushing only makes the situation worse.

2) Knowing when to walk away
This can go hand in hand with the above or it can be applied to moments of anger and bickering. I can go from 0 to Defensive in under 5 seconds and knowing when to throw my hands up and simply walk away is something I have been working on since early adulthood.

3) Don't feed the trolls
Piggy-backing off of the above, I've been in enough feuds with the Interwebs to know that when to walk away from a situation before it becomes a situation. Don't raise to the bait; walk away from my computer/environment, go bitch at a neutral party that isn't going to cache my words, then let the moment pass. Carry on as usual. I've become a lot better at putting this into practice.

4) Let the Volcano erupt
I live with a person who has a volcanic temperament; she erupts in molten fire that'll burn your damn face right off. After an initial eruption and a bit of sputtering, though, she goes back to rational thought and serenity. It's a real marvel to witness this force of human nature and I have had to force myself to keep calm, stand back and let the volcano do what she is going to do. All will be well momentarily and the day will go on as usual; there is no need for me to poke at the volcano and keep it going. Again, still a struggle but the epiphany I had some 10 years ago when I realized this was all I had to do to not have my entire day ruined - oh my goodness! It was not unlike a bouncer letting me skip the line at a club; "Nah, baby, you cool."

5) I know Feck-All 
Some of the most dangerous words ever strung together are: "I know how you feel" or "I know what you're going through." I attempt to catch myself before I say this to someone in ignorance masquerading as empathy, or at least have the decency to back-pedal and say, "Well, no, I don't but you have my empathy." or "I can't relate to exactly what you're going through, but I have gone through (such and such)." I think if everyone set their brain-to-mouth filter on HIGH before they said these words it would actually increase genuine empathy by +20.

6) Keep and Updated Brain-to-Mouth Filter
Essentially a brain-to-mouth filter is what The Kids These Days say in lieu of "think before you speak." I like the filter analogy better because a filter is something one needs to clean out and update from time to time. Keeping up-to-date knowledge on the goings on of the people in my life and adjusting accordingly e.g. Has someone gone through something so traumatic recently that a dead baby joke would be totally inappropriate now? You know, that sort of thing.

7) It's OK to wear mismatching socks
When I was in elementary school I was mercilessly taunted by a group of girls. For years they picked at me, the target of their teasing mostly aimed at the clothes I wore; specifically because I mismatched my clothes. I honestly had no clue how to 'match' my clothes, nor did I have any interest in acquiring this knowledge. My mom didn't believe in dressing her children once they hit school age; kids ought to be able to wear what they want to (within reason) and these girls were always meticulously dressed from head to toe, looking like they were in their Sunday best because their mothers had much influence over what they wore. My mom was even approached by these mothers and asked why she permitted me to leave the house with "mismatching socks." Mom essentially replied, "Haters, I got more important things to give a feck about than my kid wearing one yellow sock and one pink sock. Y'all have too much time on your hands." Something like that. Mom backing me up told me that it is OK to wear what I want, have my own style and not look like a child extra from The Village of the Damned. 

8) There is no such thing as too many Please and Thank You's
This is a preschool lesson that really stuck with me. Please and Thank you's go a long way and it never fails to irk me when someone can't be bothered to say either of these phrases. I may still struggle to keep up with some of these other lessons, but this one I am proud to say is automatic.

9) I don't always need to be sorry
While there may be no such thing as too many please and thank you's, there is such a thing as saying I am sorry too many times. I compulsively apologize whenever I think I am inconveniencing someone, be it a beg of pardon as I squeeze by someone and get up in their personal space, a genuine heartfelt apology because I erred in some way, or for having a differing opinion. This is where I need to draw the line. I am truly not sorry for having feelings, thoughts and opinions that differ from someone else's and apologizing for them is disingenuous. Reworking my delivery is the challenge, but it's one worth rising to as fake apologies would be worse.

10) Friends are Forever
I take extraordinary amounts of pride in my friendships and being a good friend; I'd even go so far to say it's my best quality as a human being. My friendships mean more to me than anything else and I try to nurture them as best I can.

11) Nothing trumps a handwritten letter
Ever.

12) Never trivialize another person's experiences/thoughts/emotions
What I may consider small potatoes might be A Huge Deal to another person. It's important to hear them out, verbally acknowledge whatever issue they're taking the time to share with me before proceeding to share my own thoughts.

13) Music saves lives
I'm not an audiophile, I've got the musical talent of a brick and my taste in music has been compared to that of a heroin addict, but by God music has changed my life and I am learning to let it evolve by being open to new artists.

14) Complimenting strangers is fun
I'm not what you'd call shy, but at some point in my late teens and early 20's I forgot how to approach strangers in casual conversation. I've discovered that a simple compliment will do the trick, and hey if it puts a smile on their face, that's awesome.

15) Spoiling others is awesome
"'Tis better to give than it is to receive" is an old adage every kid dreads to hear because they can't imagine anything more awesome than receiving presents. While I love a good present, my joy at holidays comes from spoiling my mother and indulging her geeky side. If I could afford to get something awesome for all of my friends on their birthday I would. As it is, however...see #16

16) Cooking is Love
It's a shame my grandmother - whom I share my birthday with - is not with us anymore, as I know she would be incredibly proud of my culinary skills. Cooking is very personal for me and it is the way I spoil my family & friends; it's my way of saying I love you.

17) The greatest thing you'll ever learn is Just to Love
I've come across people who hold their 'love' close to the vest; that is, they use the word sparingly because they feel it ought to be granted to only the most deserving. I respect but don't agree with this philosophy. Contrariwise, I feel the word love should be used as often as possible, whenever possible. I'd rather wear my heart on my sleeve and let my emotions show bright and clear than leave anyone questioning or in doubt of my feelings. Love is a positive affirmation and if there is anything this world is in constant need of, it is love.

18) Time is not for squandering
Up front honesty is best in every situation and should I fumble and hesitate I will miss opportunities that I will regret. No hesitation. Just jump. Landing hard doesn't compare to the pain of What If...

19) One is not the loneliest number
Being comfortable with myself came naturally to me considering the amount of time I spent alone as a child. Eating out, going to the movies and other leisure activities is fun with friends but I've no fear in going solo. If I can't enjoy being with me, who will?

20) Use Tiger Mom wisely
Lord help the individual that messes with my mom's children. Throughout my life I've had to pick which battles grew too big for me to handle and wield my trump card: Tiger Mom. She will cut you up and eat you alive. If I used her for all of my battles, though, I'd not be able to cope with any sort of adversary. Over time I have had to learn how to use her sparingly as I developed my own skills in handling a crisis.

21) Order something different
My brother was the first to get after me with this lesson. I was/am the kind of person content to order the same dish from the same restaurant, never opening myself to trying something new. What if I didn't like it? I had to learn how to order something different, to open myself up to new experiences and challenges. 

22) It's a Small World After All
The world is smaller than I initially thought; we are closer than we realize, we are not all that unalike, what we say does matter, and it doesn't make a difference to me if you're 5 miles or 5,141.16 miles away - we look upon the same moon in the sky every night.

23) All things bright and beautiful 
While the earth is minuscule, the universe is infinite. I subscribe to no one particular religion, but I do believe in A Force Bigger than Myself. I've heard some really imaginative ideas on what lies beyond and I think there is value to all of them. I have come to a sense of peace and humility when it comes to those topics, though, and it's enough for me to just acknowledge the awesomeness of the Universe itself. I think to know what's really "out there" is to cease to exist; what would the point to life be if I possessed all of the answers? 

24) Know the value of money
Money is something I try to keep at arms length in terms of value. I guilt myself for not saving better, for purchasing something I want over scrimping and pinching. It's just money. I may not have much of it, I may want more of it, but it's merely a tool and ought to be thought as such.

25) I am too old for this shit
I am not too old to wear skinny jeans; I am not too old to adorn polka dots; and I am not too old to chase after an ice cream truck. However, when I say I Am Too Old for this Shit - my blanket statement for when I am disinterested in some activity or another - I mean it.

26) All Creatures Great and Small
It is our job to be the caregivers of all creatures great and small on this earth and I am wary of people who refuse to go beyond their own self-interest.

27) Health > Everything Else
There are precious few things worth risking my health for and piddly nonsense is not among them. I know the value of my life and it ain't for trifling with.

28) The Grand Scheme of Things
Whenever I get caught up in trivial bullshit I have to force myself to step back and ask myself, Is this vital in The Grand Scheme of Things? Sure, it may be "the little things" that matter most but sometimes piddly nonsense is just piddly nonsense.

29) Recycling for the Soul
I feel physically, emotionally and psychologically lighter after cleaning house and clearing out items that need to be donated and go on to a new phase of use. Anytime I am feeling weighed down in my life and I feel a change needs to happen, I start with my living space. It's like a cleanse for the soul.

30) Life is only as hard as I make it
I don't mean to trivialize the aspects of my life that are out of my control; that's neither here nor there. Life is difficult enough to plow through when it presents challenges I must overcome, so there is no point in making myself more complex than needed. People are not as complicated as they make themselves out to be. I'd rather be simple and congenial than falsely complicated for the sake of being interesting.

So there you have it - not all of the lessons I have learned from life thus far, but a decent amount. I think the immortal Jim Henson said it best:

"Please watch out for each other and love and forgive everybody. It's a good life, enjoy it."