Today, I conquered the world.

Today, I conquered the world...or at least it felt like it.

Because, for the first time in my life, I drove myself into Downtown Chicago and back, alone, to a doctor's appointment.  And, I didn't freak out too much on the interstate, and I didn't get lost...not once.  Come on, that's awesome!  I didn't take any exists I shouldn't have, I didn't make any wrong turns.  Granted, I had a GPS to guide me and I called on God Almighty and half the Saints in Heaven for prayers, but it's still cool. This is something I've been putting off making myself do for 27 years and frankly, I'm surprised it worked out for that long.  The remarkableness  of that statistic is due to my mother's willingness to juggle her schedule and come with me.  It just didn't work this time.

Not only that, I handled an issue with my referral on my own.  Yes, I called my mother to complain about it and to be reassured I could, in fact, handle it.  Hey, I'm not a superhero.  But I got everything straightened out and under control.  I was early to my appointment, which was for a cardiac MRI, and everything worked out fine.

But then...I found out they wanted to use dye to get some of the images right and  that meant an IV.  This was also the very first time I have ever been anywhere and gotten an IV completely by myself.  And I did not cry.  My eyes welled up a little, but it's not the same thing.

If it had been up to me, most of what was cool about today probably would not have happened because I would have taken someone with me.  But it is nice to know that I can get through these things on my own.  It seems that Medical Me is growing up.  Who would have thought it? 

On a slightly different, but not unrelated topic, if you happen to go down I-290 into Chicago anytime soon you will pass Rush St. Luke's Medical Center.  The first building you will see in that complex is several stories of older-fashioned red brick design.  There is a ledge running around the middle of it.  Check out the window on the end just above the ledge as you drive by.  That window was my window.  I was born in Downer's Grove and they sent me almost immediately by ambulance to Rush and my mom once told me that she used to walk me down to that window and talk to me and watch the traffic go by outside.  (I tried to find a picture of that building, but they just built a new facility at Rush, so all the pictures I located were of the new building.)

Medical Roulette

I love it when the insurance company feels like it needs to remind me how old I am. 

It's endearing when they decide because I have grown up, they get to play games with my medical care. 

The older I get the harder it is to believe the insurance company views my care as other than a way for them to try their luck.  There is a fairly well documented history of letters and recommendations that clearly state that I need to be seen by pediatric cardiologists.  This is what the whole problem stems from.  I have found that in lay terms "pediatric" really means "when you're 18 you're out." 

So I usually have to fight very hard to be seen by the right people.  And for the most part, a well-written letter from an adult cardiologist saying they cannot treat me has done the trick relatively well.

Until now...

I am attempting to see my doctor for a check up and I have been told that there is an adult cardiologist who "believes she can help me."  There are quite a few Ango-Saxon four letter words that I have already said about this which bear repeating, but not here.

I would really like to believe that this is the answer to my prayers.  After all, seeing a pediatric doctor at the age of 26 is slightly humiliating.  I have always wished there was some kind of "transitional" cardiology.  This particular doctor I have to go see has a couple patients who have congenital defects similar to mine, which is why she thinks she can treat me.   But for 26 years I have been told I need to stick with pediatrics and because I have been willing to fight for it, I have received excellent care.  It is kind of hard to suddenly turn my back on all that.

In other news, look what I did!

I messed up the bottom and it is too small to pull down over my shoulders, but I'm proud of it anyway.  It looks perfect, even if it isn't and that is really all I wanted for my first one.

Newsings and Musings

I haven't been feeling quite myself lately, so I figured my cardiologist appointment on Monday was not going to go well. The problem is, it went badly in a completely different direction than I was expecting.

The last time I was at the doctor, about 18 months ago, he said my right atrium, which was connected directly to my lungs when I was seven has become distended, after 17 years, I wasn't surprised. He said I would have to have another surgery to correct that, but we decided to let it go for a little while.

At this appointment, he didn't even mention that problem. What came up this time is my malfunctioning left ventricle. Apparently, all the walls of my left ventricle, which is my only ventricle, are not pumping at the same time. This is a problem. I have to have a series of blood tests checking the levels of a hormone which indicates heart failure. He mentioned if the level is high enough, we might have to look into getting a pacemaker. This totally threw us all for a loop. We had never talked about a pacemaker before. We had talked about more surgery, transplants, and whatnot, but never a pacemaker.

In other news: Nathan does not make the holidays very easy. He almost never comes up with anything he wants. So, I have to scavenge for ideas and then when he actually gives me real ideas, I give them right to my mom or his mom because I always get caught in between, "What does he want?" "Well you live with him, what does he want?" People seem to think living with someone means they tell you things...

Elizabeth is coming for a visit. She feels bad for not getting to know the cats very well, so she's coming to see us. We're going to see a movie and out for dinner, to make cookies, and probably some shopping as well.

I have most of my Christmas shopping done and wrapped and under the tree. Ironically the only thing I have left to buy is Nathan's stocking stuffer. That's right...

So proud of me...

For the second time in my adult life, I have successfully secured a referral for myself to go to a pediatric cardiologist. I didn't even have to go to an adult cardiologist this time to get a letter. My records themselves were sufficient. Maybe they'll stop questioning me all together now...a girl can dream.

Take it back!

I'm sure we all have those little things from our childhood that we wish we could keep the same forever. The way we remember our grandparents' laugh or the way the first day of school always felt.

Apart from wishing both my grandfathers were still around, the only thing I would really keep the same is not having to deal with my own medical care. It loomed in front of me for so long and now all of the sudden it's here (really it's been here for a while, but while I lived at home mom still more or less took care of it.) And, I truly hate it.

Seriously, I would pay my mother or almost anyone else for that matter, pretend to be me and call all the doctors' offices and make appointments and deal with the insurance companies.

This is the hardest part about my medical care right now. Technically, pulmonary atresia with tricuspid stenosis is a children's condition, which means I have to see a pediatric cardiologist. It is very hard to do this because when I call to get referals to see the ped cardiologist I have to do this every time,

"When is your birthday?"
"5/9/84"
"But, he's a pediatric cardiologist...and you're 24 years old."
"I realize that, but, if you look at my records...blah...blah...blah."

What is worse is when I go to the children's hospital where I have to see my cardiologist and I have to explain to the security guards...yes, security guards...why I'm there and what I will be doing. I end up feeling so persecuted.

Vitamin K--how I miss you

For the last year I've been taking Warfarin, an anticoagulant. It's part of my daily medical regimen and I have never hated a medication more. It doesn't taste bad and apart from easily bumping and bruising there are no serious side effects.

The worst thing about Warfarin is that vitamin K is a coagulant, which means it's off-limits. Vitamin K is in nearly all green-leafy vegetables: lettuce, spinach, cabbage, and my beloved broccoli. It is also in cranberries and avacadoes.

For some reason my Warfarin level refuses to go up, I've been at 1.4 for months now and if it would go up, I would be allowed a little bit of my favorite vegetable, and maybe a dill pickle now and then.