My Family Onscreen

If you want to know what life in my family was like, pre-tx, go see "My Sister's Keeper", which just opened in theaters today.

I'm not going to rehash the entire plot, only to say this--Anna Fitzgerald was concieved as a genetic match for her sister, Kate, who has leukemia. Since the time she was born, she has been donating cells, blood, and marrow to save her sister's life. Now her sister is in renal failure, and needs the biggest sacrifice of all--Anna's kidney.

Anna talks about how life can change in an instant. One night, we see the family joking at dinner. The next, Kate is sick and being tended to by paramedics as she vomits blood on the bedroom floor. This reminded me of a time I went into the hospital, and I was lying on the couch while my parents talked to the doctors, wrapped in my mom's winter coat and all the blankets we could find. I was so cold. My brother and sister just sat in the family room and looked at me, while my parents tried to figure out what to do.

Kate's father, Brian, has some mannerisms my own father has, or does things he's done. Sleeping at Kate's bedside, and touching his nose when he wants a kiss (my dad touches his cheek). As he watches her go to prom with her boyfriend, there are tears in his eyes. I don't think my dad cried when I went to prom, but that's neither here nor there. I could understand the expression of a father watching his child do something he didn't think she'd get to do.

Anna helps take care of Kate. There's a sharps box in the girls' bathroom. Bryan and Mel learned how to mix my IV meds, and to flush my lines and my port. Mel could probably even access it, if she had to. She will be able to when she's done with nursing school. During one scene, Kate looks so embarrassed as Anna wipes blood off her face and changes a towel underneath her. Anna does it so matter-of-factly, just like my own siblings have done. But that doesn't mean I felt any better about it.

When Kate needs a prom dress, she needs one that covers her port-a-cath, which is currently accessed. Her boyfriend strokes her back and holds the emesis basin so she can vomit during her chemo treatments.

This family is my family. Sure, things are different. The situations, for one. But the dynamic, that's so similar. Kate feels bad because she takes so much time away from her siblings. Her siblings want to help her but don't know how. Kate wants to stop being a burden to them.

People in the theater were just bawling. The only time I cried was near the end, when Kate and her mother, Sara, are alone in Kate's hospital room. Kate looks at her mother and says, "It was a good one, wasn't it?"

"The best," Sara answers.

That's what I would say. It has been a good one. The best.

Single and Complicated

(note: if you do not like posts that have to deal with a 20-something's romantic frustration, then scroll down and read some poetry. Or....something.)

My romantic life has always been a little bit complicated.  I mean, beyond usual complicated. 

I didn't really "date" (if you can say high school freshman "date") until I was 13 and in high school. This was OK with me. I had crushes before, but when you're in seventh grade crushes mostly consist of getting the boy you like to dance with you at a chaperoned dance in the gymnasium, whilst you stand a foot apart under the watch of your math teacher. 

In high school I had one boyfriend. I didn't really mind, although I did develop other crushes. We dated on and off for the first three years of school. He was a good friend, and he didn't really mind any "issues" that came with me, because, at that point, there weren't that many. I mean, we didn't go on dates after school or anything. Everything we did was weekends or school events (like French club trips). Your lives are fairly segregated in the early years of high school. 

College, I was engaged. Now there were many reasons that relationship didn't work, but my health wasn't really one of them. He was fine with all of that, behaving heroically through my ICU stint and other (less dramatic) hospital admissions. I don't know many guys who would've done that. And for awhile I stayed in that relationship because I thought that no one else would be able to handle all that came with being my significant other. 

But, regardless, we broke up right after our Junior year. So single again--all through the t/x, etc. which was fine. The last thing I needed was having to reassure a guy that I was going to be OK, yada yada yada. That's not the most fun thing to do when all you want is for someone to be telling you those things. 

So in 2006, a year post-tx, I started dating again. A nice guy. We got along well. But he had major issues with my health and the uncertainty it brings. And even though I told him that no one's future is secure (this was after 9/11 for crying out loud) it didn't work, and he was my first ever hospital break-up (it was done over the phone). 

Now I'm non-dating again, but there is one person that I can't get out of my head. It's sort of torturous. And so, being that is it was it is (and knowing that we cannot, at this moment, have a relationship due to extenuating circumstances), I sort of feel like romantic crap. 

(OK, yes, this is probably a whiny post. But it does go  along with the whole post-tx mentality so that's why it's here.)

I need to be with a guy who knows my situation and doesn't really care. Not that I don't want him to care--I need him to know what it entails--but he needs to be able to deal. He can't look at me and be pondering when I'm going to drop dead on him. 

The worst part about this whole unrequited love thing is that it is just that. I really, really hate dreaming about things you can't have (who doesn't?).  

The thing that really makes this hard is we have known each other for so long; therefore, he knows absolutely everything about me.  That makes dating so, so much easier than having to have the Big Talk. 

OK, rant over. (Was this a rant?) I just needed to get that out. 

The Internet is really, really great...

*bonus points if you get the title reference!*

It's so great I can blog while I wait for tests at Children's...
Yes, today I'm getting an Upper GI series, which involves drinking Quick-flavored Barium and then taking lots of Xrays to watch the stuff move through my stomach and small intestines. But, as usual for me, my body doesn't want to cooperate so it's taking a lot longer than usual. I'm due for my next picture at 12:10.

The nice thing is, I get to see people that I haven't seen in a long time! Like Dr. G, my transplant surgeon.

I was in the cafeteria getting a bag of chips (I was told to eat soemthing, so that was my pick), when I saw him getting lunch. He is, hands down, one of my top 5 favorite people at Children's because he is so nice and so fun.

He gave me a hug and called me "beautiful" (yes, I know, I'm vain), which made me happy. :) We talked about his kids, my sibligns, life in general. I haven't seen him since my transplant surgery itself (you don't really see the surgeon, unless you need a more detailed biopsy, or another transplant (gulp!). I told him about the show over the summer and he asked me if I was playing my piano (he has a great memory, did I mention that?). Seeing him really made my day (he told me it made his week, so I'll take that.). I'm sure it's great for him to see his patients and know he did an awesome job (which I told him).

So that's what I'm doing...I'm in the family resource center, which the Columbus Blue Jacket Foundation funded. It's awesome--it has lockers, a workout room, a laundry room, food, and these great computers. :)

"I'm Not a Hero"

I just look like one (kidding!)

That has been one of the strangest post-transplant experiences--people (some of them total strangers) coming up to me and saying "You're so brave", or variations of that theme. Or "you're a hero."

But really, I'm not. I wasn't.

Heroism, to me, implies some great feat of strength or daring, or something really impressive, like the firefighters who rushed into the burning Towers on 9/11 to save the workers trapped inside. That's heroic. That's putting your life before others for the greater good.

I didn't do that.

All I did was give my consent to lie down on an operating table for a few hours.

Transplant surgery has a different mind-set than other surgeries. Usually, if you want one, you're going to die without it. There's not a whole lot of risk inherent there--you will die without the surgery, for sure. You might die on the table. But you might die on the table getting an appendectomy. So really, the risks are in your favor. Without the surgery, you're dead. With it, you're giving yourself a shot.

The decision to get listed wasn't some big heroic thing. It was highly pragmatic. I wanted to live. My body was standing the way. So I had to ditch the trouble spots and move on. To do that, I needed to do this.

That's not heroic. That's just being logical.

And it doesn't make you especially brave, either, when your choices are "I will die" or "I might die." I'm going for the "might" part.

If you've read this blog since its inception, you know that it took me awhile to be convinced that I needed the surgery. For a long time, I felt fine--maybe not the best, but I was able to do everything I wanted. When that changed, so did my outlook.

But it doesn't make me heroic or brave or anything like that. It might demonstrate I was intelligent enough to go for it and not mess around vascillating between making the decision or not.

God gave me the cards that are my life. I played them. And to not play the hand to the fullest wouldn't go with me. So I did.


(btw, the title of this post is a song track title from the "Dark Knight" sound track.)

Precisely three years ago...

Karen had just called us to tell us to come down to Children's.

Amazing.

If you do nothing else today

Watch this video.

I was just like those girls. There was a vest in my bedroom. I used oxygen at night before my transplant. And I wanted it so desperately when I finally realized that, without it, days were short and numbered.
If you haven't already, please become an organ donor. Ask your friends and family to do the same. And TELL your friends and family about your decision.
It was literally Hell--not being about walk 20 feet. Not being to climb steps. Not to be able to eat anything, or stay awake longer than 20 minutes. Brushing my teeth was the hardest thing in my day.

Think about that.

It's unacceptable for this to be happening. CF is the most common genetic disease in the United States. Let's work to reduce that statistic. Or, at least, make it so that it can be cured.
As we head toward my anniversary, I'll be posting more of my thoughts now that I'm three years out. But right now, I can say, with total certainty, that this life is the best I could imagine. Tonight I'm going to a rehearsal where I will sing and dance and move about the stage with 60 other "normal" people. I don't think anyone on the cast or crew knows, except my friend Jaylene who was in high school choir with me, and maybe some of the Cap kids. I kept it such a closely guarded secret.
When I hit that stage next Friday, it will be because a woman in Minnesota--Suzanne--decided to donate her organs. Without her, there would be no me.

It's a sobering thought. Help spread the word--volunteer, donate, or just tell people to read this, or other CF blogs, like Nate and Tricia's. I can't really ask you enough to do these things.

I am privileged. 19 people will die today because they didn't get their organs. I have heard stories about CF kids who died in high school, in college, much, much too young. I know too many wonderful CF patients. And some of those wonderful kids will be one of those 19 people.

Thoughts--Dignity with a chronic illness

"Do you know anything about multiple sclerosis?"
"Only what I've read...I had a patient...who had it...But she was great. She didn't let anything stop her. Even using a walker. She danced with her walker."
"Christ, I hope that doesn't happen to my mom...It's like what you said about her being so into her dignity...she'd feel like she could never go out of the house."

--J. Mitchard, The Breakdown Lane

The Breakdown Laneis a new Jacquelin Mitchard book that deals with a bright, vibrant woman who is diagnosed with MS at the same time her husband leaves her. She has three kids. She's a ballet dancer. She's used to having it all together. She has a certain image she presents to people.

The above excerpt is from a conversation her son is having with a old friend of Julianne's (the mom). And the part about dignity certainly rang true to me, even though CF and MS are vastly different things.

For me, it was oxygen. I knew I would never leave the house if I was ever on oxygen therapy (other than at night, when it didn't matter...I was 23, I wasn't married, who cared?). There was no way that would happen. I was the go-getter, the one who organized, who planned, who did everything. Oxygen so didn't jive with that image. Plus, my friends didn't like using the handicapped placard. How would they deal with a twenty-something who lugged around and oxygen tank?

I did just about everything else--I went out with the port accessed, I went to school with PICCs and on IV therapy, etc.But I always covered it up, and I never told anyone unless they reallyneeded to know. Pity was not high on my list of desirable emotions. And nothing said poor kid to me more than the emaciated CFer on oxygen therapy.

When the Cleveland Clinic suggested I start in about a year before my transplant, I freaked out so much I called my CF clinic, who was Not Pleased with this development and took the clinic people to the woodshed. I just hated the entire idea of being tethered to something that would so visibly demonstrate the lack of ability my body had to take care of itself. I didn't want pity AT ALL. That was verboten. Totally.

Thankfully we never got to that point--I only did nighttime supplemental oxygen before my transplant.

Dignity is very important when you've got a chronic illness. It's one of the only things you can control--how other people see you, or remember you. Certain people see it all--they hold your hair when you vomit, they know you don't eat, they help you to the bathroom, they change the IV dressing. But this is a pretty elite circle. Not everyone can handle it. And even if you think some people can, you might not want to let them in anyway. I wanted my friends to keep a certain image, or impression, of me. Is this all mentally healthy? I don't know. But it's how I handled it.

Call Congress

I take steroids. And yes, I can tell when baseball players lie about taking steroids, because you can clearly see they have "moonface" (Steroid related swelling, which so far I have managed to avoid, unless Dr. A really ramps them up, as he likes to do on rare occasion).

However, I have not yet developed Phenomenal Skills with any sort of Sporting Equipment. But that doesn't mean that I haven't enjoyed other particularly wonderful side effects.

Most of really unpleasant ones--losing or growing excess hair, for example--I have not had to deal with. Thank God. And I am actually on a fairly low maintenance dose of 10 mg/day. And it does make my joints super-happy. Pre-transplant, my joints were Highly Cranky all the time. (I was totally perturbed when Vioxx went off the market. That was a Miracle Drug. I would have gladly dealt with potential cardiac complications 30 years from now if I could take the Blessed Yellow Pill that got me through today.) So there is something good about it. But they do make one area of life sadly complicated.

This is Shopping For Clothes. Now, while my face is normal size (I think), my stomach is not. Weight gain there is especially prominent when you take steroids, and it's sort of out-of-proportion with the rest of your body. Some girls can look like they are six or seven months pregnant while taking these.

So shopping for jeans, skirts, hose, etc. becomes very interesting. You can get things over your hips, but they don't buckle/zipper/close in any way. I actually look at hose sizes now, and wonder, Hmmm, do I go by what my crazy stomach's size is, or the size of my legs? Do I want them to be too big or too small?

With jeans, if it fits the waist, the butt is huge. So I feel like I am swimming in my jeans.

Yes, I am glad I weight more than the 85 pounds I clocked in at pre-transplant. But geez, I do miss having a proportinate body.

Cruisin'

A recent Ohio flap has been about the number of handicapped parking placards that are distributed around the state. Complaining about handicapped parking is isn't new--it tends to surface around Thanksgiving and Christmas, when people see (or think they see--an important distinction) the handicapped spots being abused by people who do not "deserve" a placard.

Now the argument has turned from this to deciding that the state distributes too many handicapped placards, i.e., multiple ones for a single person (if multiple people have to drive that person).

Handicapped parking complaints raise my hackles awfully quick. Pre-transplant, I got a placard. I was commuting to school, and Capital's parking situation was (and is) abhorrent. Without that placard I would have been parking in the hinterlands, lugging about 20 pounds of books on my back to my classes. It would not have flown. And I still have the placard. It's good until October of this year (in Ohio they're four year things). To look at me, both pre- and post-transplant, you would not think I "needed" a spot. I'd be one of those young people that the letters to the editor complain about. Well, I wasn't. I had 23% lung function. I needed that spot, damn it. Even after the transplant, there are times when I've been in the hospital and during the recovery period, I've needed to use it.

I hate the looks I got (and still get, if I use it), from people. A note to the general public: STOP IT. The next time I get one of those looks, I swear I'm going to show that person the surgery scars.

A person who is young can very easily have a heart or lung condition that requires the placard. You don't need to be in a wheelchair or have a broken leg, or whatever. I would even say that they should get FEWER looks, because I never had a wheelchair, so it was just me and my beaten-up lungs trudging toward an entrance. It wasn't like I could push myself there.

I don't know where the debate is currently headed, and I know that there are people who misuse the placards. But can we please get over the idea that only people in wheelchairs or on crutches need these placards? It's outdated and untrue.

More ME!

OK you're sick of it, I know, but...
In case you want to read my letter for the transplant brochure, it is here
There is also video of moi...although I'm not sure what the video is. I think it's my bit for the telethon in'06.

In the news...annonymously :)

I made the news again...I know this is old hat by now, but still fun.
Children's is now Nationwide (as in the insurance company, which is based in Columbus, and whom my dad works for) Children's Hospital. So the Sunday Dispatch had a special "re-dedication" insert, which included a hospital time line.
Under 2005? "Children's performs its first lung transplant."

Yeah, that'd be me. :-D
Since I was in house, I showed it to Dr. A (who seemed less than impressed, hah) and Wedny, my nurse, who was also my nurse right after my transplant. So she and I reveled in our coolness for a bit. :) She was very big on eating the last time I had her. I told her that this is obviously not a problem now. She laughed. (In a good way. She was really hard-core about food...much like mom.)

More diaries

April 14, 2005

Stayed home today--joints complaining. Ugh.

April 28, 2005

...Sinus thing rescheduled as an actual surgery for next Thursday, which means I"ll probably spend the night as a result. oh the joy. But it's good drugs! Got to look at the bright side, at least...

May 3, 2005

MRI yesterday...oh the joy of 65 minutes in a tube! I ran though the ENTIRE first act of Phantom while in there! Argh! I wish I was a little kid so they'd sedate me!

May 12, 2005

Well it has happened. I am--OFFICIALLY!--on the list. In fact, I am the first in Ohio (well, at least for AB+ blood). So it begins. The marketing crew came and interviewed me today, which was a lot of fun, and they took some pictures. They even want to come to my house and do some video, too. I'm not really sure how I feel--ready, anxious...surreal...like it's not really happening. I told Tiff and Branden--Branden says, "so, should I say congratulations?" I don't know! I don't what WHAT I should be doing. Work tomorrow will be interesting!
It's so weird...I really don't know what to feel. It's quite bizarre, like this isn't really happening to me. But it is...it really is...

May 15, 2005

The waiting has been almost preternaturally calm--I hardly worry about it. And yet I am always conscious that the call could come at any time, any place.
Troy was so sweet when he found out I had been listed...I'm going to start writing letters to everyone soon, just in case. I want to have things taken care of.

May 24, 2005

Should I put the count on hold while the insurance battle rages? Karen said that United (OK, more accurately, the State [probably]) is balking at paying for the actual operation and such. They'll cover the after stuff, but not the actual thing itself. So I'm on "hold" while they discuss, but K. said they might reactivate me, since it will be paid for, somehow. So I don't know. I'll keep counting.

Diary entries

From my journals, before tx. Very varied, and I've edited out stuff like what I was reading, watching, and school/friend drama. :)

December 1, 2004

....I'm back in the Resort. The last IV course didn't finish because my veins are just too scarred and tough, so we had to quit the course about a week early. Well, I never really got back to baseline, and I've been coughing more and there's been some blood too. But the real deal-breaker was when I had pancreatitis symptoms on Sunday. We tried to treat them at home, but it was too extreme, pain-wise, so I've been here since Monday. I'm also going to get a port put in before I go home, since all my peripheral and PICC sites have gone to total crap, which is no surprise after 11 years, I guess. So I had my first MRI today (actually, an MRV, to look at my veins), which was a little freaky--I'm not very claustrophobic, but I sure was here. So I'm on the pain drugs and IV antibiotics and phenergan and IV fluids, so I'm really living it up here...

December 2, 2004

Still here in Paradise...port surgery scheduled for tomorrow at 4 p.m. Not much going on here...Branden and Richelle might come visit on Saturday afternoon, whcihc would be nice. Today I also received violets from the choir and a Christmas arrangement from Grandma and Pa.
Still having pains and nauseau...would really like to get this under control...

December 8, 2004
Feast of the Immaculate Conception
Ryan's 7th birthday

Sorry I haven't written...had an IV in my thumb, so really couldn't hold a pen. My hand is still pretty swollen [from the infiltrate] but that's OK.
Got the port on Monday--went OK. It hurts quite a bit thought...I wish that would stoip. I'm still in here, but I talked to [my boss] today and she said all is good at work, so I can relax about that.
Ryan called me tonight, which was great...Since it's a Holy Day of Obligation, Fr. Mark came to give me Communion after dinner, which was nice.

December 12, 2004
Note: this is a really dark entry that I wrote after having a less than wonderful conversation with one of my doctors. So take EVERYTHING with a grain of salt,please. Thank you.

I'm not even sure what to write--I just feel like I shoulde engage in the activity...
I'm 22, and this is my life. Trapped here, always dependent, always under someone's thuumb. I can't do what I want, can't be what I want, can't do anythign I want, because of my life's circumstances and the people who are always saying "no" and denying me opportunity. I don't even know if I WANT a stupid transplant--what good will it do me?--but of course I'll say "yes." Of course it will be done. It doesn't really matte r what I want, or live. I've got 30 mothers who won't let me just be or live or do what I'd like to do. I have a brilliant mind, which is wasted in my work. I have energy and passion that can't really be channeled into anything I care about...
I wish I was free and could do as I pleased...but I"m stuck here, where nothign will change, where I'm held captive to fear and uncertainty...even with the transplant, it's only five more years. I'll never be free, I'll enver be able to do what I want. But I'm the "good" girl, the obedient daughter and patient. I'll always do what they tell me, because I don't have enough courage to go against them.
I'm so tired of people telling me that they do things "because they care." There are times where I wish they cared much, much less. I"m so tired of being smothered by concern.

February 25, 2005
In case you can't guess by the heading, I"m back in my favorite place! Although I must admit it hasn't been too bad...but with joint and chest pain and increase cough, I figured it would only be a matter of time. And I will say, I am enjoying the port much more than I thought, and my arms are gratefully relieved of their IV hosting duties.
I'm on amakacin, two other IV drugs and off Cipro, Ceptax, Tobra (yay!) and minocycline. Huzzah. Mayube now I can keep my head in the game.
Generally feeling OK now trhat we've got the chest pain in order. Wednesday my joints felt like they were on fire--I could hardly walk. Ugh. Like I said to Dr. M tonight, I am ready for some new parts, and once I get my transplant, I am going to rock.

Ferbruary 26, 2005
Still here, still working on the problems. Having chest pain, but at least I'm on IV phernergan now, which is so much better than the pills, I will say. I may actually get some real sleep tonight.

February 28, 2005
Still here...still having pain, still messing with drug combinations. Such is life.

March 1, 2005
Began transplant testing last night with massive blood draws, and by massive I mean about 7 1" tubes!! This has been followed by ANOTHER huge blood draw this morning, as well as 24 hour urine test, whatever that means. I will say, though, that if I didn't have the port, these blood draws wouldn't have happened because my veins are pretty shot, as we know.
We're doing a sat study tonight to chart oxygen levels and we might do more urine tests in the AM, but at least the blood letting's done--Dr. A says that's mostly to find my tissue type for transplant.

March 2, 2005
Going to have some sort of lung scan soon in Nuclear Medicine (egh..) that involves breathing in gas an dhaving IV contrast to see blood flow into the lungs and such. Not quite sure what this entails,b ut it's another transplant thing, and Dr. A says that it's not invasive. I just hope it's not like an MRI...that was not so much fun. Even though MRIs don't hurt, it's quite unnerving to lay inside the tube with your neck and head in some sort of vice-like ocntraption and the inability to see anything except a tiny swuare of wall,b ut seeing anything makes you feel less trapped. Without that little bit of light it would be very tricky. I would equate it to being placed in a coffin or mummysack still alive, yet unable to move. EH! Quite bizarre. So I'm hoping it's not like that, although it's alwasy COLD down there--colder than Radiology in general, which is always about 45 degrees--you could almost keep milk and eggs down there.
And it's so quite, you hardly ever see anyone. You get the feeling you could languish away for hours, down there, waiting for someone to find you and do whatever. But the absolute WORST is floroscopy/intervention, because it's like the Twilight Zone. NO ONE is ever there, the TVs aren't on, the four exam rooms are dark and filled with strange medical equipment and cold steel tables. when you go to get a PICC you go into the Intervention room and lay on a thing, bitter cold plate of steel underneath a huge light and radiology equipment. The nurses put warm blankets on you, but it doesn't really help. Sometimes there's music. It takes about 30-45 minutes of lying cruiciform on the table to find the deep veins (using ultrasound) and then inject the novocain or whatever, then thread and stitch in the catether...it's very hard to relax and hopefully they do it ONCE, right, because it's quite uncomfortable to have people tugging and pulling on delicate underarm skin. Dr. Hogan does a good job, but some are just hacks and don't really care if they hurt you.
PICCS generally aren't uncomfortable, though they did make dressing interesting when it was warmer. After a few weeks they start to hurt, and you REALLY wish you could just scrub your sking as well as you can with thick, foamy bath gel...In the summer, you couldn't swim with it, or wear short sleeves, or anything. And [some people] never really got used to seeing it.
--
Got the scan done. Let me tell you, spending 45 minutes in the dimly-lit bowels of nuclear medicine with your arms over your head is NOT the best way to spend an afternoon. Your arms get quite tired after awhile and those plates get so close! I felt like I was going to be unceremoniously squished...not a nice feeling at all. But overall, not a bad test.

March 3, 2005
Finalyl back...LONG day. Discharged around 2:00, then went to Eastland...then I came home, made up the dinner menu for the next 5 nights and went shopping FOR the menu at 7:30, which took a long while because I'm not used to the new Kroger layout. We've still got to get the bloodwork straightened out for Mondya--I can't BELIEVE how much blood they've needed for this transplant prep so far.

March 7, 2005
Only worked a half day today, which was good, given that the morphine did a number on my concentration and such, and my joints were highly rebellious. But the blood draw went well..while we're on home IVs, I'll be doing 8:30-3:00 hours at work.

March 14, 2007
Entering the last week of home IVs--huzzah! I don't tihnk I can take any more hair neglect. The port is great for many things but hair and body washing are not some of them. Sigh. Oh well. Only two more days!

March 17, 2007
St. Patrick's Day
IV reprieve...huzzah! Clinci went well, although I get the feeling that Drs. A & M want to get me transplanted as quickyl as possible. The whole gravity of the situation is starting to hit me.
Really, really tired...going to bed, so sorry for the short entry.

March 24, 2003
Holy Thursday

IV reprieve but symptom revival...I think that this point it would simply be easier to list the body parts that DON't hurt than to give the litany of complaints. But we're "working on it"...sigh.
Stayed home form work today to give my falling apart body a break...honestly, the sooner the transplant, the better. I am so TIRED of feelign like crap all the time.

March 28, 2005
Easter Monday/ Octave of Easter

....Appointment with Kathy today. Talked about my life within the whole prism of transplant. I'm so nervous about it. I mean, I WANT it, but I'm terrified at the same time. I guess that's normal. Everyone tells me that's normal. I don't know, obviously.

The "Fat Man" and his great art

The passing of Pavarotti made me want to put on my La Traviata recording and just glory in his voice. I have yet to do this, but will probably do it today.
His voice, so warm and huge and thrilling, is one of the few "voices" that are instantly recognizable. He was always a joy to listen to. In fact when I go to buy opera recordings I almost always pick the one he's on, just because I know that at least his role will be a fine, wonderful, technically brilliant rendition of whatever the role happens to be.
Singing is one of the things that got a lot better after transplant (well, OK, we're still messing with the CI, but I have hopes for that). Can you imagine basically doubling your lung function? Because that's what happened (I'm at about 61% now, and I was 28% pre-tx. So you do the math). Karen, the transplant coordinator, told me that basically only the center of my lungs (closest to the trachea) were working; the rest was scar tissue. But these new lungs are really happy, and music is so much better. Especially in the realms of Opera--breath support sort of important, there. :)
Now if the ears would just catch up...

ICU 2001

I just wrote a post over at CPG about one of my ICU experiences in 2001. Head here to read it.

The Anniversary

At 8:45 this evening, it will be two years since we got "The Call" (check the archives--July last year--for more on this). And I can remember it like it happened two minutes ago.

I was so tired. I was actually trying to think of a better excuse than "I'm exhausted" to leave on my boss's voice mail. It was Sunday night and I was taking my pills, sitting on the old indigo couch in our family room. Mom was on the love seat and Dad was sitting against that, watching TV. Bryan and Mel were hanging out--they were on summer vacation. I had about three more pills to take. Mom and Dad had almost dragged me up to Easton that day, where I'd bought a new Coach bag (the only thing good, thus far, about that day) and I'd had a fish sandwich at Fado. Well, I'd tried to have a fish sandwich. I don't remember how well that went but probably not very. Dad had to drop us off and pick us up at every store, because I couldn't walk around the complex. In fact I didn't even really want to be there. But I was.

So it was Sunday night--"the beginning of another week," as they say on Pollyanna. My cell phone was, as usual, sitting on the end table by the remaining pills, mocking me. Not ringing. As usual.

So here I was, considering which pill to take next, and the phone rang.
I had caller ID on my cell, so when I saw Karen's name, I tried to keep my face neutral. But I knew what it was. Even though we were friends, she wasn't going to call on Sunday night just to chat.

And It Was. I had new lungs waiting for me, somewhere in Minnesota. The new lease on life had come. A day like today, struggling through heat, forcing myself to put one foot in front of the other, wouldn't happen again. Well, it would (as we did rehab) but it wouldn't be because my body was disappearing.

It was a long night. We left for Children's around 1 a.m., all of us piled in mom's silver Civic (dad was driving). The sky was cloudless, the stars brilliant. I didn't say a word.

Bryan and Mel slept on the couches in 4AE's multi-purpose room. I slept. The nurses didn't quite know what to do with me. :) Mom and Dad and I listened as Karen and Dr. A came in with updates. Fr. Mark, thanks be to God, came.

At 7 I was taken down to pre-op with my parents. Then I don't remember anything else.

An amazing, incredible day. My gratitude is simply overwhelming. I saw an organ donor plate yesterday that read "THNK YOU". Two words are so inadequate to express what the Gift of Life really means. But it's all we have.

And I have had two years with my family and friends. I have traveled to new cities and seen new things. I've joined new organizations, met new people, seen new babies be born and new marriages take place. I've watched my cousins and my godson grow up. And, of course, I've been reading.

If you're not an organ donor, think about it. Become one. Check out some of the links in the side bar, especially Lifeline's. Because you can save someone's life, and she will thank you forever.

The market and organ donation

I've posted a few things here before re: organ donation and ways people have come up with to reduce the shortage. Most of them involve paying people for their organs, or having organizations like Lifesavers, where only people who are organ donors them selves can receive organs.

One of the most recent articles I've read was in the Dispatch earlier this week. I'm going to have some of the author's comments here, and then my responses (he's in italic):

How did we arrive at this unfortunate situation? As is so often the case, our supposed servants in Washington are at fault. Would-be donors are not supplying as many kidneys as patients need because Congress has decreed that no one may sell their organs. Instead you can only give your organs away. Most people, including me, and almost certainly you, aren't willing to do that for anyone other than a family member or close friend. So people without arelative or friend who can give them a life-saving kidney are in trobuel. They have to take their chances on a very long waiting list, hoping the right person dies at the right time before the clock runs out.

First off, the main fallacy of this argument is that is it based SOLELY on kidney transplants. Now these are, along with bone marrow and some liver and RARELY some lung, able to be accomplished while the donor is alive (the liver regenerates). For heart and lung, obviously, you have to be dead. This is also true for corneas and a pancreas (I think). So selling your organs won't help because you'd basically be saying that you'd kill yourself. Now if you're not willing to go through an operation for someone else, I highly doubt you'd kill yourself.
Congress banned the selling of organs because there are some very, very desperate people who would probably consent to death in order to get money. Which brings up the question, who would pay for these organs? The author suggsts that it would be the patient. Who would determine the price? Oh, the "market."

Which is another issue. As my readers know, organ transplants aren't decided based on ability to pay. They are decided babsed on medical suitablilty, as well as a host of other factors. If you are not a good medical match, you don't get an organ. If you are not going to be compliant, you don't get the organ. If you have a history of noncompliance and an inability to BECOME compliant, then you don't get the organ. You don't even get listed. I saw lots of people in the CF clinic who were totally ineligible for transplant because they had screwed themselves up so completely, there was no way they'd be able to handle it.
Also, many centers have a high survival rate due to the fact that some centers are pickier than others about what organs they accept. Dr. A was always talking about getting me "optimal" organs, whcih drove me crazy at the time, but now I"m glad. How are we going to know how good thse organs are? The donor will have to submit to medical testing. This isn't cheap. So will he make the recipient pay? Or the insurance company? (Which they will be THRILLED about, let me tell you) And would the recipient have to pay before all these tests, or after? What if they just aren't
a good match?

The writer asserts that by legalizing the selling of organs
"they'd be no crisis like there is today." Um, wrong. Maybe not for kidneys, although the things I"ve written above raise serious doubt sin that quarter, but we would still have a vast number of people who are waiting for organs that cannot be obtained by living persons. But, again, the author is unable to see beyond kidney transplants.

If we were really serious about organ donation and decreasing the waiting list, we would make it easier to be a donor. If you are a donor on your license, that's your consent. We shouldn't need to have to get another approval from the family. We could ban smoking just about everywhere so there would be more lung and heart donors. We could ban alcohol use so that they're be more eligible liver donors. Now obviously I'm being a little facetious here. But using the market is not the way to go. There are too many questions, and it would totally upend the system. What aobut those who are NOT waiting for kidneys?

As for Lifesavers programs, those won't help either. It amazes me how so many of these groups don't even focus on the medical side of transplants. What if you die in a car accident and thuis are unable to donate organs due to extreme internal damage? Or you're no eligible to be an organ recipient due to some other factor? The whole "I'll do for you, you do for me" idea sounds good, but, like so many other things (social security, anyone?) it's a good in theory, bad in practice idea.

Sure, waiting for organs is no picnic. I know. But the way UNOS has it set up it is a fair system. Everyone, rich and poor, gets an equal shot. Insurance companies do a good job covering transplants, and it's getting better as they become more "mainstream" in medical treatment. To have people buying and selling organs like they buy Wendy's stock is not only impractical, but would have serious rammifciation for everyone involved in transplant--patients, hospitals, medical staff, OPAs, and others. And they would not be good.

Learning from CF

This is a great article over at the Canton Repository. Here's the beginning:

Recently, a co-worker, an intelligent but brash young man, asked me a question about my late husband, Jim, that irritated me.

He said, "You knew about his cystic fibrosis before you married hihttp://beta.blogger.com/img/gl.link.gifm, didn't you?" In other words, Jim was "damaged goods," and what was I thinking to marry him? The question also implies that illness precludes one from happiness and a normal life. How could a sick person possibly be a good mate?

I swallowed my pride, thinking this young man hadn't had life experiences that would allow him to understand why I had married under those circumstances. Then he asked, "Didn't your husband hate being alive?"

That one blindsided me. I answered as calmly as I could that Jimmy had loved living. Yes, he was short of breath. Yes, a bulky oxygen tank encumbered him. Yes, he had to do daily therapies, but at no time did I hear him say, "Gee, I'm sorry I woke up today!"

Read the whole thing. As for me, I agree. It's amazing how many people are totally insensitive to this issue. Like just because I had CF or whatever I shouldn't have any goals, shouldn't want a normal life like everyone else. I should just languish here and let nature take its course. In fact, soon after I was diagnosed, one of my classmates said to me, "Why are you studying? You're just going to die anyway." That was a great thing for an 11 year old to hear, let me tell you.
People can be so crass. And they just assume that you shouldn't do anything, that your life isn't worth living if it isn't perfect. GRRRRR.

Is it worth it?

This is a question I asked a few times (OK, more than a few times) before my transplant. It's a question that can come up in the observation/pre-op process, too. You have to be willing to accept the transplant and that alll the crap you'll go through will, eventually, be worth it. And some people decide that it's not; they want to 'cash it in,' so to speak.

I can relate to that on some level, because I thought that a few times. When we first began talking about the transplant I was very reluctant, because I was still pretty functional. The problem is, you have to be listed before you really are non-functional, because they can't do the transplant if you're too sick.

And recently, with all the IV crap, I've thought "wow, why did I do this again?" But then I thought about it, and it'll be two years in July. In four months. And that's two years that I am about 99% sure I wouldn't have had if I haven't gotten the transplant. Some great things have happened in that time span, and even the ordinary things take on air of greatness when contrasted with the fact that you might not have been here to enjoy it otherwise.

What brought this to the foreground again? I was reading an article in the Arizona State University paper about two students w/ CF. One was a graduate, and one was a graduate student (I think). The one who had graduated also had a sister with CF, who died two years after a transplant. So she (the student) decided she didn't want to get one because everyone she knew that had one only lived about two years.

Now like I said above, I am sympathetic to this viewpoint. Well, to a point. Because let me tell you, when I started to get really sick, I was glad I was on that list. Knowing that your mortality is nigh makes you really wish it weren't, sometimes. I absolutely wanted that surgery. It was crazy.

And having almost hit the two year mark myself, I can't imagine not living these two years. They were good ones. And I don't know how this girl will feel if she gets worse and has said no to a transplant. Hopefully she'll be content with it. I hope so. Because you have to do what's right for you. But I wouldn't've been able to live with myself if I didn't go for it. I'm not really sure how people can turn down the second chance at life. Because before transplant, "my life was stolen from me...I [was] living a life I had no wish to live." (The Hours--great movie)

Like I said, everyone's different. But something about it just doesn't jive with me. But that's just me.

Listening

This post from The Anchoressreally struck a chord with me, so I thought I'd share my thoughts on it here. In a strange coincidence, I will be posting this on both this blog and my Catholic Girl blog, since they have to do with both health and faith, two things very close to me.

The Anchoress talks about the day her doctor told her she was losing her hearing due to Lyme Disease. Well, having lost a good deal of my hearing due to drugs pre-tx, I can relate to her feelings of shock and dismay. And even anger. Both her sons are musicians. I am a musician. Of all the things that had been taken from me, this was the one that really hit home. I mean, it was what I did. I was a singer. I had been trained in classical singing. Music was the thing for me. In college, I really developed and ear and was coming up with good relative pitch (OK, not as good as Tiff, who has perfect pitch, but we can't all be perfect). We first noticed (well, my friends noticed) in my later years at college that I wouldn't hear them when they asked me things, or were talking to me. I chalked it up as being distracted or involved in my work. Even as a kid, when I was reading, if you tried to talk to me it could be very hard to get my attention.

But I didn't just have good hearing, I had great hearing. I could hear my name being whispered two rooms away. It drove my parents crazy. I never did the loud rock concerts, loud walkmans, whatever, that ruins your hearing. And yet, the drugs that saved my life in the end took away quite a bit of it.

Fortunately, God has blessed me with the ability to still have my music. Some of the upper, upper registers are gone but I have pretty good musical memory. And that's what singing is, hearing the pitch in your head. So if it's a song I know (and, thank God, I know many) I'm OK. I can go to musicals that I've known and loved and still enjoy them. I can learn new pieces, as well, and my musicals abilities haven't abandoned me. In regular conversation, however, it's another story. People get frustrated because I can't hear them. Well, I'm frustrated because I can't hear them. When I'm in a noisy restaurant and everyone's complaining because they can't hear each other, I always say, "welcome to my world." It makes them a bit more conscious. There's nothing more inane about being mad at someone for being unable to physically do something. It's stupid.

The Anchoress also writes about the Dark Night of the Soul, how God uses people in their weakness. I love the concept of the Dark Night. To me, it is very comforting to know that those who are closest to God can also be, at times, the farthest from him. St. Terese of Avila, I believe, calls these periods of "aridity," like being in the desert. Immediately before St. Therese of Lisieux's death, she was in severe aridity. She couldn't pray, she doubted her vocation, she doubted the existence of Heaven. Now I haven't doubted the existence of Heaven, but I have been in one of these periods lately. Not just because of the hearing problems, but because of the health issues overall, and how dependent they can make you. Dependent on other people, when we all want to be as independent as possible. We don't want other people giving us meds, washing our hair. These are things we have been able to do since childhood, or can handle ourselves. To be reduced to an almost sub-child position can be intolerable. But to not have the support is the worst of all. And when it seems God is silent...

I remember something I read once, from a letter Mother Teresa wrote to her confessor (I think). She said that sometimes she found her mission almost too hard to accept. She couldn't do it. And she would pick up her rosary, very deliberately, and just say it. The Creed. The Our Father. The Hail Marys. The mysteries. Just going through it, almost, if I may say, mechanically, until she reached the end. And it would be enough.

I have taken this strategy to heart. When it is too much, I take my beads, whichever set is handy, and just pray them, letting whatever is in my heart be opened and presented before God and Mary. They know what is there. And, in the end, it is enough.