Saturday, December 30, 2006


is the end of the two-a-day aerosol drugs!! Woohoo!!! :-D I can totally deal with doing it once a day, but the twice a day was killing me. :)

I will have pics up from the Christmas festivities soon...they're coming, but now that I'm back home and with slooow dial-up it may be awhile...

Friday, December 29, 2006


OK, wow, lots going on and I'm feeling like I'm never going to get back to work! Sheesh!

So on Wednesday (yes, two days after Christmas and the first day of our family reunion), Dad and I trekked to Children's at 7:30 to do labs, CXR, the usual. Labs--OK, CXR--good, PFTs--getting better, especially the DLCO, which is good. We had finished the IV drugs on Christmas day and we didn't restart those, oh the joy! So Dr. A listens to me, still hears a few things in there, and orders a CT scan. CT scan OK, BUT he wants to see me on Tuesday (the day I was going back to work, Opening Day for the 127th, a big day and I need to be there!), for a regular appointment which may include: 1) a two-hour steriod infusion (grr) OR 2) a bronch (DOUBLE GRR). If it's a bronch, that means I'm out for the whole day and possibly Wednesday. Needless to say these developments do not make me happy. At All. What a way to start the new year...I just want to go back to work!!!

Monday, December 25, 2006

Merry Christmas!

Merry Christmas, everyone! It's my second post-tx Christmas, and they get better and better, let me tell you, even though we're wrestling w/ the crazy port and the inhaled's still Christmas and it's still fun!

Some pics for you:

The Gang at Branden's Christmas Party
Back: Sean, Troy, Tom, Derek
Middle: Christine, me, Tiff, Gary, Branden
Front: Sarah, Lindsay J., Lindsay S., Andrea

Richelle and I at Brio

Alex and I at the Brio party

Sunday, December 24, 2006

Merry Christmas!

Merry Christmas, y'all!!
I will be busy prepping for Mass and all that good the catholic girl blog to find out more. :)
Enjoy!! :) Eat too much, sleep too much and open waaay too many presents. That is the plan. :)

Friday, December 22, 2006


Slept all night. That's exciting. :)

Thursday, December 21, 2006

Antoher visit to Shangri-la...

Oh what joy was mine this morning to wake up at 5:45, to rain and dark, and to drive to Children's in the rain! Woohoo! My appointment wasn't until 7:30, but we were there at 7:00, whereas Infusion Clinic (where I get blood drawn) didn't open until 7:20. So the joy. Valerie was my nurse today, and we did the normal blood draws, which took us to about 7:45, then Mom did the 8 AM meds and I took my 8 am prograf. That's when Polly, Dr. A's AA, found us, and chatted with us for awhile, since we didn't have anywhere else to go and the clinic was empty. She is awesome. :) After we were done she took mom over to the office for a "tour" while I did PFTs with Kathy and Marita in the pulmonary lab. The numbers are up very, very slightly--like one point each--but the DLCO (the test that measures gas diffusions) was a lot better than Monday. The test that measures another type of chemical, and thus lung inflammation, was also up slightly, to 8.8., but as long as it's under 30 we're all happy. :)

Five of us transplant kids were there today, so it was a bit of a madhouse, since Dr. A wanted to see us before Christmas. So it was a looong wait. Our appointment was at 9:00, and Julie had seen us by then to do the normal run-down of drugs and symptoms. I mentioned that I was still having shaky days, and she said that was probably a combination of the increased Vfend (an antibiotic no one has ever heard of, but I'm on sort of permanently) dose, which messes with the tac drug level, so it can make you shaky. I think it might also have to do with some of the BSL issues we've been having, but that's just me. I've also been having trouble sleeping and some general achiness, but they're not too worried about that.

Finally, at like 10 something, Dr. A came in and we went over the chart and such. He is still hearing "crackles" in the bases, but my cough has gotten a lot better and my PFTs are sloooooowly coming up. He says it's just taking awhile for me to get better. We're still doing the IVs through Christmas morning and the twice a day inhaled drug through Saturday, and then we'll switch to once a day. We also messed with the tac dose again. Then he wanted a CXR, so we had to do that and then wait for him to look at it before we could go. All in all, we left Children's around noon. Not the way I wanted to spend 6 hours of my day, but whatever.

Other than that, things are going OK. I was able to baby-sit tonight which was a lot of fun and I'm going out to lunch with them tomorrow, as well as attending Branden's annual Christmas shindig. I will post pictures when I get a chance.

Tuesday, December 19, 2006

Should we pay donors?

From a link on the Corner....

Need transplant donors? Pay them

By Virginia Postrel

June 10, 2006

When Kaiser Permanente forced kidney patients to transfer from the UC Davis and UC San Francisco transplant centers to its own fledgling program, it shortened their lives -- and created a scandal.

But the Kaiser story represents much more than a single health maintenance organization's bad decisions. It reveals a fundamentally broken transplant system, a system that spends its time coping with an ever-growing, life-threatening organ shortage rather than finding ways to reduce or end it.

More than 66,000 Americans are languishing on the national waiting list for kidneys -- 10 times the number of kidneys transplanted from deceased donors each year. And the list keeps growing, with a queue of more than 100,000 expected by 2010.

Kidney patients literally live or die by where they are on the waiting list. While getting progressively sicker, they must spend several hours at least three times a week hooked up to a dialysis machine, the kidney-disease equivalent of an iron lung (it prolongs your life but imposes a physically debilitating prison sentence).

Increasing the supply of deceased donors, while desirable, is difficult -- organ donors have to die healthy and in exactly the right circumstances. But even if every eligible cadaver were harvested, it wouldn't fill the gap. We need more kidney donors, lots more. And they need to be alive.

Unfortunately, our laws and culture discourage healthy people from donating organs, as I learned this spring when I gave a kidney to a friend.

My parents were appalled. My doctor told me, "You know you can change your mind." Many people couldn't understand why I didn't at least wait until my friend had been on dialysis for a while.

This pervasive attitude not only pressures donors to back out, it shapes policies that deter them. Some transplant centers require intrusive, demeaning psychological probes that scare people off. Some bioethicists suspect that donors suffer from a mental disorder, as opposed to being motivated by benevolence or religious conviction.

The scrutiny is particularly nasty when healthy people want to give their organs to strangers -- not truly unknown people, mind you, but patients they have gotten to know through Internet sites or press coverage.

Many transplant centers flatly refuse "directed donations" to specific strangers. Some argue that it's "unfair" for patients to jump the queue with personal initiative and an appealing story; others insist that such donors aren't to be trusted (they must be either criminal or crazy). Posters at warn givers to never even mention the Internet, lest their good intentions be thwarted.

Sandra Grijalva, a San Francisco woman with polycystic kidney disease, asked Kaiser officials if she could find a donor online -- after having one of her friends disqualified because of high blood pressure. "They said absolutely not," she says. The donor, Kaiser maintained, might someday try to extort money. (So might your cousin, but at least you'd be alive.)

Instead of dire possibilities, consider a cold reality: Without tens of thousands of new living donors, most of the people on that very long waiting list are going to suffer and die on dialysis. The transplant community's top priority should be increasing the supply of willing donors.

The most obvious way to increase the supply of any scarce commodity -- paying more for it -- is illegal. Federal law blocks transplant centers, patients and insurers from compensating donors in an above-board process, with full legal and medical protections. The growing and inevitable "transplant tourism" industry, and even shadier organ brokers, are the kidney equivalents of back-alley abortionists.

Legalized financial incentives would encourage more people to volunteer their organs. Donors would probably still be relatively rare, just as surrogate mothers are. Many, like me, would still help out without payment, just as some people get paid for giving blood or fighting fires while others do it for free.

Paying donors need not hurt the poor, any more than paying dialysis centers does. Compensation could, in fact, help low-income Americans, who are disproportionately likely to suffer from kidney disease. A one-year tax holiday for donors would nudge rich people to help. A pool to make up for lost wages (legal, but rare today) would enable many otherwise willing friends and relatives to contribute.

But even talking about incentives is taboo to some self-styled patient advocates. On Monday, the American Enterprise Institute will hold a conference in Washington on incentive-based transplant reforms. (It's organized by my kidney recipient, a physician and health-policy scholar at the institute.) When the National Kidney Foundation heard about the conference, its chief executive, John Davis, complained to the institute's president, "We don't see how an AEI forum would contribute substantively to debate on this issue."

Davis' group adamantly opposes donor compensation, lobbying against even experimental programs and small tax credits. It's as though the National Parkinson Foundation opposed stem cell research, or thought researchers should work for free.

Even a limited market in kidneys would transfer power from the rationing establishment to kidney patients and supportive communities. It would give patients more options. Grijalva, who works with developmentally disabled seniors, would welcome the shift.

"My biggest fear and my biggest feeling," she says, "is that I'm totally out of control, that these people have the control and they are making all the decisions, and I have absolutely no input whatsoever."

Virginia Postrel is a contributing editor to the Atlantic and the author of The Future and Its Enemies and The Substance of Style.

Monday, December 18, 2006

Follow up report

Had a lovely time visiting Dr. A and crew this morning--blood, CXR, PFTs, the normal. Things are stable, but not improving (well, in a statistically significant way, anyway), and Dr. A said that it might take 1-2 weeks for things to get better. Which means I have to "slow down cowgirl" and not be running all over the place. Sigh. So no work for me, which is kind of killing me because mentally, I'm good. I just get short of breath and tired and with the messing with the steriods my bones/joints are being cranky, too. So physically it's probably a good thing I'm not at work. Besides the fact that I'm still slightly "puffy" (oh I am so hoping that's what it is, anyway, I am trying so hard to be good), so I don't look my usual awesome self. :) I go back on Thursday for another follow-up, the pre-Christmas tune-up :), so we'll see what happens then. We did add flovent (inhaled steriod) to the drug regimen, so we'll see if that helps. Fortunately the Thursday visit is just a clinic appt. so no blood or CXR, which means I can sleep a little longer. :) Of course, all of this might also delay my surgery which was scheduled for 1/17, so who knows? Not that I mind. I want to get all this straightened out before we start poking around in my head, and I know Dr. A is on board with that.

A note: as we were sitting in the Infusion clinic and mom was pushing the IV med, she says, "well, in a week we'll be opening presents." And I'll be done with the IV course--yay! So I'm looking forward to Christmas morning...which is less than a week away!

Sunday, December 17, 2006

Beauty and the Port

I gotta say, the port is great for a lot of things. But one thing that has always been a challenge is keeping up w/ my hygenie regimine when on home IVs. The problem is, port, peripheral, PICC, whatever, you can't get the IV site wet. That's bad. So over the years we've evolved...with the PICCs or whatever, you can just wrap the arm in saran wrap, throw it out of the tub and basically take a normal bath. Can't do that with ports due to their placement, so it ends up being this two step process-first hair, then the body. Once a week, when the needle is changed, you can have a glorious bath/shower and try to take care of everyhthing at one...which is what I did yesterday. Shaving, exfoliating, the whole nine yards.

The hair is really the problem. I can take a bath just by sitting in the water and washing up, no problem. But the hair is just ridiculous. When you try to wash it quickly it looks awful and only lasts a few days before it looks yucky. The other thing is you try to get all your "errands" out of the way when you have good hair because that doesn't last very long, especially since my hair is fine and tends to look pooey after a few days, anyway. It needs constant love. Which I don't like to do, because i'm not a hair girl. And my family really does not love washing my hair, let me tell you. Mom has threatened to shave my head on more than one occasion because it 's just such a hassle.

Anyone have any ideas on how to keep hair nice? Last night I slept with it in a low bun, which worked, but my head hurt. Not a good trade-off. The things we do to look good, eh?

Saturday, December 16, 2006

And this...

You Are an Excellent Cook

You're a top cook, but you weren't born that way. It's taken a lot of practice, a lot of experimenting, and a lot of learning.

It's likely that you have what it takes to be a top chef, should you have the desire...

Didn't we already know this???

You Are a Bow

You don't think of it as the holiday season - you think of it as the present season!

Back home

Well finally back home, dishcarged late always! We had some problems with the port last night. I have a "floater" kind of port, which means that it likes to move around and not stay still, so once it's accessed it can move around and make pushing the meds in tricky. The meds went in OK (veeeeerrrryyy slowly) so we have to re-access today but everything's fine now. I actually took a real bath this morning, with exfoliating and shaving and all that good stuff so I feel like a real human being again. :) Also grabbed some things from my apartment so I can hang out here until Christmas.

Nothing much to report...feeling OK. The Vfend has been doubled so I think that's making me kind of spacy. It can also make you dizzy so I'm not going to try to drive until the spaciness clears up somewhat. On the plus side, my brother got me The Devil Wears Prada for my Christmas gift, so I can watch that! I can also catch up on some reading...

Friday, December 15, 2006

Now I'm really getting sprung!

OK so now I'm really getting sprung! We thought it was going to be yesterday, but with the abdominal pain and such, we found a spot of fluid on the L side that we wanted another look at today. But everything looks good and the PFTs to 65%, so that is good! We did an abdominal ultrasound series this morning but I think everything was OK on that. So I will be going home later, provided everything looks good, and will be on the levaquin (oral) and the IV med until Christmas Day, which isn't to bad. At least it'll be done before the family reunion on the 27th! (and when David gets here!)
I will be at my parents' for awhile...I think tonight's plan is to go get some new DVDs with the Wal-Mart gift card I got here last night ($50!!) and hang out at home. maybe Tiff/Branden will come over...who knows? I could certainly use the company!!

Wednesday, December 13, 2006

Gettin' sprung

I am outta here tomorrow, with only one home IV to do every 8 hours, so not so bad! The plan, I think, is to stop onC hristmas Day, which is OK. We can handle that. So wahoo! I should be getting out of here between 11-1 p.m., so that's happy, and I;ll be at my parents' house while we're doing the IV stuff. Still don't know about work; if it's every 8 hours, plus the high BSL side effects, work might not be happening since I've been wanting to sleep off a lot of these headaches lately. But we'll see. I probably won't go in next week, for sure, and then the week after...who knows? Everyone will be here for Christmas then...

I'm not dead yet!

As they sing in "Spamalot", but if you were listening to my psychotic pulse ox monitor, you would think I was!
For the unitiated--the pulse ox monitor measures how much oxygen is in my blood and my heart rate. The O2 levels have been OK (97-100), but the heart rate monitor seems to tihnk I'm either braycardic (like with 30 bpm on my heart) or it's 160 beats per minute. Either of which, I'd be pretty aware of because I'd probably be passed out and not typing to you people! Gotta love medical equipment...
BSL are OK, still in the mid-300s, which are high but not as high as they've been. As we taper off on the steriods we should get them under better control.
Had my first visitors--Missy and her son, Nathan, who is an adorable first grader as SPX> He and his older sister, Sarah, have atypical CF so they're here a lot. He had a visit with the cardiologist (everything's good, yeah!) so they stopped up here for a bit afterwards, bearing a balloon that Nathan picked, Chocolate covered pretzels (yummy! I can have those but not fruit...who knew?) and a notepad. Nathan is an adoraable kid--he wants a drum set for Christmas. What fun for the family, eh? :)

Wednesday AM update

Still here...but might be getting out today or tomorrow! Tomorrow is probably more likely, though. Dr. Astor is back in town today so he will look at what we've been doing and go from there...I think I am down to two (or three) steriod treatments, which is good, but I'm still on at least 1 IV antibiotic, plus the levoquin. The cultures are still looking good, so no rejection and it's not a virus. Yay! The bloog sugar levels are still all out of whack, though, so we're trying to get those back down. I really, really want some fruit but can't have any because that would just send the sugar levels through the roof, so I'm drinking lots of water and diet soda. It's hot in here and I;m trying to stay cool. I;m also desperate to wash my hair but since I've got the port hooked up that could be tricky, plus I've got a headache (probably from the high BS levels) so I don't think I could handle washing my own very, very long hair right now (which is getting cut ASAP once I'm out of this joint.).
Reading Jane Eyre which I read back in h.s. for AP English but I'm liking it better this time around. Also having lots of fun shopping on Amazon and making up a list...hey, I've got to milk this for something right?
Only two more weeks until I see David...yay!
OK all for now, lunch should be coming soon. Oh the joy!!

Tuesday, December 12, 2006

Tuesday update

Forgive the typing I've got a SAT monitor attached to my right hand, so there will be typos, probably...

We;re messing with insulin doses since I'm on so many steriods, and we're trying to get the numbers down from 330, where they are now they were 370 something earlier, which is really high for me. The highest I've ever been before was 300, and that was definitely an outlier in my data. Other than that, we're still doing levoquin by mouth and valcyte (I think?) IV, plus the steriods IV. I still don't know if I;lll ggo home on IV meds, which wouldn't be too bad, but I;d like to be done by Christmas because who wants to be pushing drugs over Christmas? Not me, that's for sure. Especially since I'd liek to be able to take regular baths and such, which is hard when accessed. It's a lot nicer with a port since mom knows how to access it, so we can undo it when we want, but we still can't be undoing it every day since there's only a limited number of times you can access the port site before you need to replace the whole thing. Granted, it's alike a couple 1,000 times or something, but still. We'll cross that bridget when we get to it, though, I;m not going to worry about it now.

Everything else going rpetty well. The cough is a lot better, and so is the chest pain. I;m still pretty short of breath even thoguh I went around the hospital with my parents today (well to the gift shop and the cafeteria, but still that's 'around', technically.)

Cultures looking good so far no sign of rejection, hurrah! So that's it for now, we should know some more in the AM after Dr. Shell, David (the new fellow), Dr. Patel and Julie have powwowed. The biggest thing I think now is the blood sugar.

At the resort...

Hooah, here I am, hanging out at Children's. :)
Yesterday I came in for a follow-up appointment, which lead to a bronch/biospy being scheduled for 11. I figured that would happen, since the levoquin didn't seem to be working the way it was supposed to. I was still coughing, short of breath and having a little bit of chest pain. Not a lot, but enough to mention. So we did the bronch and I was admitted to C5 (the new tx floor here) afterwards.
I'm on steriods four (!) times a day, and an IV antibiotic. The preliminary results show that there isn't any rejection (yay!) and it looks like I just got whatever everyone else has that's been going around, but since it's me we're being extra-careful. Oh well. Better than than not careful enough, I suppose. Best thing about these new rooms is they have private bathrooms with tubs (!!) so I can wash my hair and all that good stuff without it being a total ordeal. No trekking down the hallway to use the public bathroom before someone else walked in on us. What fun that was, let me tell you!
Looks like I might be here until Thurs/Friday, not totally sure yet. But since I have computer access I'll keep you all updated...

Friday, December 08, 2006


Well, I guess if the first time one gets sick post-tx is at almost 16 months out, then I don't have that much to complain about. Still...

Starting last weekend I had this dry cough, which David was a bit worried about but I wasn't. As long as it wasn't productive I wasn't going to worry too much about it. Well it became productive, but of course this week was loaded to the gills at work so I couldn't just leisurely not show up. So I didn't call clinic until yesterday, and I went in to have tests done, etc. PFTs were down a few points, and my sats were 97 (as opposed to 100 or 99, like they usually are when I go in) but I didn't have a fever, which was good. apparently fever is like the great big warning sign. I gave them a sputum culture (man I sooo though I was done with those) and Julie did a saline wash (a lot of fun, trust me. It didn't hurt but it felt...odd) and we did the usual CXR. I should have the test results back soon from those but Dr. A wasn't too concerned re: the PFTs and the CXR. So I'm on Levoquin and we'll see what happens. My joints are sore, which isn't new, but it's new ones, like my shoulders. I mean, your shoulders hurting? Something you don't think about until it's actually happening.

Of course all this has to happen right before Christmas and Messiah . Hopefully the levoquin will get this and all will be good...because next week is nutty at work too!!!

And,....not related to tx, but happy birthday to my godson! He's 9 today!

Friday, December 01, 2006

TX follow-ip visit

OK after all the "frivolous" posts below (oh, you know you like them!), I should probably give y'all an update on my clinic appt. today.

Per usual, I had labs at 8, to check immunosuppresant levels, kidney and other organ function, and other levels that will tell us whether or not we need to adjust med doses. The infusion clinic, where they access my port to draw blood (thank God!) is getting decked out for Christmas, and I got to say it's looking pretty good. Thye had the cutest teddy bear attached to a red velvet stocking that I loved. That's one of the benefits of going to a children's hospital--they tend to really decorate well for holidays, especially Christmas, because you really, really don't want to be in the hospital for Christmas. But I digress.

After that, I go to Main radiology to have a Chest XRay (CXR in medical jargon) done, and that usually takes all of five minutes. If I had a dollar for every CXR I've had...well I wouldn't be going to work tomorrow, that's for sure. But anyway. I can't sit in the regular waiting room, even if wearing a mask, so I hang out "in the back" by the exam rooms--many, many fewer people back there. You also get to watch the inpatients going in and out, which can be interesting.

Following that, I go back to the clinic where I do PFTs with the pulmonary techies (it was Kathy and Muffy today). I had a 63% FEV1 which is up from last time, and the score of my "hold your breath for 10 seconds so we can check gas diffusions" test (aka the evil Cleveland Clinic test) was 65%, up 5 points. We also have a new test that measures lung inflammation--you want the number to be under 25, and I was 13.2. So all the numbers were happy, even weight, because I think I managed to lose a few pounds (OK, like two), but still, after turkey day,I'm happy. Dr. Astor was also happy, and no changes thus far. Julie (the nurse coordinator) also updated my mennigitis vaccine before my surgery in January, since there's going to literally be "Messing with my head." :) I also met with the social worker briefly.

Today I also visited my endocrinologist, Dr. Hardin, who is switching my insulin doses. Apparently we're going to mix the lantus (long-acting insulin) with Humera (or something...humerus, whatever), a short-acting insulin, before dinner, and then use the Humera pen before breakfast and lunch. So we'll see how that works. My blood sugars have been high after lunch and dinner so hopefully this new program will provide better control. But other than that everything is going well.

I go back in January for a physical w/ Dr. A before my surgery Jan.17. So I get a little "holiday break" from the Resort. Yay!

Thursday, November 30, 2006

And Ernie...

You Are Ernie

Playful and childlike, you are everyone's favorite friend - even if your goofy antics get annoying at times.

You are usually feeling: Amused - you are very easily entertained

You are famous for: Always making people smile. From your silly songs to your wild pranks, you keep things fun.

How you life your life: With ease. Life is only difficult when your friends won't play with you!

And Miss Piggy...

You Are Miss Piggy

A total princess and diva, you're totally in charge - even if people don't know it.

You want to be loved, adored, and worshiped. And you won't settle for anything less.

You're going to be a total star, and you won't let any of the "little people" get in your way.

Just remember, piggy, never eat more than you can lift!

I am a Mud Pie!

You Are Mud Pie

You're the perfect combo of flavor and depth

Those who like you give into their impulses

Wednesday, November 29, 2006

breast feeding and transplant

OK, no, I am not pregnant. But this is something that's been bothering me lately, ever since the Delta debacle with the breast-feeding mom. ALl these women are out talking about how breast-feeding is the best, the most noble, the most natural way to do it, and if you don't breast feed then it's like you're denying your child these vital things.

OK I was not breast-fed. My brother and sister weren't, either, and you know, we all turned out OK. Breast-feeding never really had an appeal to me, and when I had CF, we couldn't breast-feed because we needed all the calories we could get. Breast-feeding would physically hurt us.

Pregnancy post-transplant is a risky thing, anyway. I'm sure that's something we'll end up discussing more here, but even if you get pregnant and have the baby, you cannot breast-feed. The immunosuppresant drugs are present in the breast milk, and after 9 months of walking the very, very fine line between suppressing and trying not to hurt the baby, doctors want to get you back to a normal med schedule as soon as possible. So breast-feeding is, again, out of the question, in order to preserve your own health.

I just wish people would udnerstand all that. When some of us use formula, it's not for some vain reason. Some of us have legitimate reasons for not breast-feeding. So get off our backs and stop telling us that "breast is best" and if we're using formula we're akin to child abusers or whatever. Some of us have no choice. It's a fine line.

OK, off my soapbox now. :) But it really does make me mad. Think people!!

Wednesday, November 15, 2006

This is cute...

Not directly transplant related, but what the heck? It's my blog and I can post what I want!! :)

New Children's Book Tackles Cystic Fibrosis

November 14, 2006 3:07 p.m. EST

Ayinde O. Chase - All Headline News Staff
Miami, FL (AHN) - Author Leah Orr tells the heartwarming story of a little boy's first school crush on a beautiful girl who has cystic fibrosis in her new book, "Kyle's First Crush."
In the story Kyle falls in love for the first time in Miss Irene's pre-k class.
The girl who makes his heart go "pitter pat" and his palms sweaty is named Ashley Elizabeth. She's a very special girl who makes Kyle feel special.
However, Ashley has cystic fibrosis, and Kyle learns from his teacher how this disease affects her. With the help of his mom, Kyle finally gets the courage to tell Ashley how he feels about her.
Orr's book has been widely praised for its beautiful illustrations by Josephine Lepore and shows in full color the story of a boy's first love.
The story, heartwarming in all aspects, is even more touching since Orr is the mother of Ashley Elizabeth, and Lepore, is Ashley's grandmother. "Kyle's First Crush" is the first in a series of seven books that the author plans to write about her daughter Ashley Elizabeth and cystic fibrosis.
"Children born today [with cystic fibrosis] are expected to live much longer [than in the past], but scientists, researchers and the CF Foundation are looking toward a cure by 2012," says Orr. "So, I will write a book every year until a cure is found."
She plans to donate all of the profits and proceeds from the series to the CF foundation.

Don't you just know I am going to be buying some of these???

Tuesday, November 14, 2006


OK, so maybe not famous but whatever.
My story will be up on the Lifeline website sometime this week (avec art!)...on the homepage, click the "more stories" link to see it if it's not on the main page.
Also, be sure to sign up for the Buckeyes-Wolverines challenge at the top of the page if you're not already an organ donor (and if you read this, you better be!!!)

:) :)

AND---I had my 16 mo. anniversary on Saturday!!!

Wednesday, November 08, 2006

ENT update

So, as I said earlier, I went to my ENT's office today for the last check-up before surgery, which is now scheduled for January 17...what a way to kick off 2007, eh?? Anyway.
I had a CT done of my head, one taken while I laid on my back and one while I was on my stomach, to make sure the ears were good and that there wasn't any ossification/calcification in the left ear (the one that's getting the implant) that would impede surgery. After that I met with a woman who had her C.I. done in June, and she's very happy with it. She said that your hearing continues to improve for a year after the surgery...they're always tweaking and making sure the "map" of your ear is at its best. Even though I will still need to lipread and I won't have perfect hearing, it will definitely be better than it is now. I'm going with the behind-the-ear transmitter, which looks like a regular hearing aid, only a little "fatter". It even has a spot to plug in an iPod. How cool is that? (Of course I need to get a new iPod to take advantage of that.... :) ) I need a pre-surgery physical (bloodwork and all that jazz) a month before the surgery, but that shouldn't be a problem since I get pretty much a full physical every time I go to clinic! I swear, I'm definitely healthier than most people I know (TX notwithstanding!).

So that's the "ear" looks like I'll be out of work for about 4 weeks until they activite the C.I. It takes about that long for swelling to go down so they use the magnet part correctly. Woohoo! (Well, OK, "no woohoo" as Troy would say, but whatever.)

Monday, November 06, 2006

Another reason to donate life...

From Canada:

Monday October 30, 2006
Two sisters fought back tears at Queen's Park Monday as they pleaded for stronger organ donation laws, which could help save their mother's life.
Sherry and Sarit Kind called on the Ontario government to introduce so-called "presumed consent," which forces people to opt out of organ donation rather than the current system of only using organs from individuals who have signed donor cards.

Their mother, Suzi Kind, is in critical condition in hospital, waiting for her second liver transplant after contracting hepatitis C from tainted blood 15 years ago. She waited five years for her first liver and is now waiting in a Toronto hospital for another one after suffering major health problems.

"One person can save eight people's lives," said 26-year-old Sherry Kind. "We have to do something about it. We have to help."

Suzi's older sister Sarit, 28, feels that despite a recent increase in donor rates the presumed consent system, which the NDP's Peter Kormos introduced in a private member's bill, would boost rates even further.

"I'm sure the majority of the population would want to give this second chance at life," Sarit Kind pleaded. "They want to be heroes. Why take your organs to heaven? Heaven knows we need them here."

Kormos feels the issue is one of political will.

"There is some squeamishness about it. I, for the life of me, can't understand why people are squeamish about saving the lives of mothers, daughters, sisters, brothers, children and parents," he said.

A fellow liver transplant recipient, George Marcello, is walking from Toronto to Ottawa to raise awareness about organ donation and help the Kind family before it's too late to save Suzi.

"It's about time we tested it here," Marcello said of presumed consent, which has seen a 94 per cent success rate in countries where it's been introduced, including Spain. "The results of using this kind of system in any country have always shown a dramatic improvement in the rate of donation."

But not everyone is as enthusiastic about the idea. Mark Vimr of Trillium Gift of Life Network, which oversees the province's organ donations, believes the system isn't needed in Ontario yet.

"We have looked at this issue very closely and carefully," Vimr said.

"We did not feel we were prepared to support implementing a presumed consent approach in Ontario."

Vimr added that a survey found people had mixed feelings about the presumed consent policy.

Kind is one of 1,700 people in Ontario currently waiting for an organ transplant.

Her daughter Sarit knows time is running out.

"We want her to be around for many years," she pleaded. "We want her to see us getting married. We want her to see us having kids. And if we don't do something to change this, she's not going to be around."

To find out more about what George Marcello hopes to learn during his walk, you can call (416) 509-5719.

Ear stuff

One of the other benefits of transplant (ha. ha) was the ear "stuff"--i.e., the cochlear implant (hereinafter referred to as the "CI"). I'm going in to Dr. Willet (my ENT)'s office on Wednesday to have a CT scan, more tests, and to meet with a person who's had a CI. I gotta say, I hate these things. Meeting with a person who's had one never helps me. It never has, it never will. They did this to me pre-tx too, and I hated it. It's just not my thing. Never has been. But I have to do it, it's "part of the process." So whatever. I'll keep you posted as to how it goes.

Last year about this time, we were getting ready to do the skin graft on my right arm to fix that problem...fortunately we're not having the CI implant until after the holidays. Thank God!

What you see isn't always what you get

Especially when it comes to handicapped parking.

This is sort of a beef of mine, since before transplant (my senior year in college, actually), I applied for a state handicapped parking permit from the state, and was granted one. Now, to most people, by just looking at me, you wouldn't think I needed on. I could walk fairly quickly, for short distance, but it didn't last very long. And I still looked "normal," so you know, most people thought I had stolen grandma's parking pass or something. I was actually never on oxygen before transplant, so most people would have never known.

Now most people never said anything outright. I might get some odd looks, but most people just went with it. It wasn't until after my transplant (about two months after), that I got questioned. And it was at work.

I get a parking pass to park in the underground parking garage, so I do. One day it was kind of crowded, so I decided to use the handicapped placard I have. So I did. Morning, no problem. All good. The problem came in the evening.

I was walking to my car, and I get stopped by the state trooper that guards the parking garage entrances.

"Is this your car?"

(I"m thinking, "duh, I'm getting into it.") "Yes."

"U,, why do you have a placard?"

I was a little floored. "Excuse me?"

"Why do you have a placard? What's your handicap?"

I could not believe this kind of interrogation from a cop of all people. So I looked at him and got a wee bit saucy.

"I just had a lung transplant two months ago," I said.

His mouth dropped, as I knew it would, and I went on my way.

The point? Don't embarass yourself by asking dumb questions because someone doesn't "Look" handicapped. Because most likely you're just going to look stupid. And end up irritating someone pretty good.

Saturday, October 28, 2006


The biopsy yesterday went pretty well, that I think I'm going to do some Christmas shopping/food shopping/general errands today. That's what'll happen when you sleep for pretty much an entire day!! We should have results on Monday but at least there weren't any extraneous issues like last time!!

Thursday, October 26, 2006

biopsy tomorrow

Going in for the lovely biospy tomorrow at 7:30, so blogging will, consequently, be light or non-existant for awhile. Oh the joy! We go to admitting at 7:30, then up to the Outpatient Surgery Center to have them access the port and start fluids. Then it's "Hurry up and wait" until 9:00 when the procedure "officially" begins. So Mom and I will be spending our Friday in a little glass cubicle (at least one with flat screen TV!) for however long this one takes.

I'll let you know how it goes...

Wednesday, October 25, 2006

Biopsys abound...

OK, yes it's been a long time since I've updated, but I've been out of commission, due to tx related stuff...all the better to write about here!

Last Wednesday I had my (very, very belated) one year bronch, which was fun, per usual. But this time it was not quite as much fun. There was a lot of bleeding (well, more than usual) and I went into quite a coughing jag, which caused two blood vessels in my eyes to pop, so now I have blood-streaked eyes around the irises, which looks odd, yet seasonally-appropriate (i.e., Halloweeny). So they had to sedate me more than usual, which meant that I slept until 3:00 in the post-op area! (and the bronch began at 9:15!) Dr. A also found a small polyp in the upper right quadrant (up near the shoulder) that he wanted to get a better look at and possibly biopsy.

Well today I had the CT with Contrast; very lovely, because we cannot use the port, so they had to start a peripheral IV, which is next to imposssible with my small, crooked, incredibly scarred and abused veins which had already been scarred and abused by the outpatient lab that morning. So the pickings were even slimmer than usual! But we eventually got one in and got the scan done. After examining it, Dr. A decided he wants to do a biopsy of the little sucker on Friday. Yes, this Friday. The Friday I was supposed to go to D.C. to see David. But noooo. So I will be here, in who knows what condition, over the weekend. That is a bummer.

I'm not too worried about the thing, because Dr. A said this can happen and is probably normal. But still, it's more stuff to do. I should be used to it by now, though, shouldn't I? One would think...

Friday, October 13, 2006

Initial post-tx photos

Now I can start documenting the "recovery" process via photos, so here are some:

Top: Tom and I at his 23rd birthday party, less than a month after my discharge (August 2005)
Middle: Tiff and I at her 24th birthday party (September 2005). You can see the bandage that's covering the burn on the right arm.
Bottom: The DeArdo family Christmas picture 2005--me, Bryan, Mel in our backyard (October 2005)

Tuesday, October 10, 2006

Izzy says "Donate Life!"

And she knows what she's talking about...both personally and professionally.

Link on the know what to do.

Thursday, October 05, 2006

Hanging out at home

So I decided to go back to work Nov. 7, or something, so my first week would be short due to Veterans' Day. But I still had to wait until October was over, because even with the completion of rehab, I still had a lot of testing to do that would pretty much consume October, like the 3 month tests, which included a bronch (which, as we know, I love!) with biospy, which meant it would take a little longer and I'd be a wee bit more sedated. The chances of being sore afterwards were also higher since we were snipping of a bit (or bits?) of lung to test for rejection as we did this. So in October I geared up for all that, and I bought a new car, a 2002 Civic EX I named Lilo, after I traded in the beloved Rosie for something with a little more "get." But man, it's hard to say goodbye to your first car...sigh.

Anyway, in September, choir practice at church started again, and I was so glad to be back. I had real lung capacity, woohoo! Everyone was excited to have me back, and I was glad to actually get out of the house occasionally, since I got my driving privileges back at the end of Sept./beginning of October. I also went out with my friends to celebrate birtdays, like Tom's 23rd at the end of August and Tiff's 24th in the beginning of September (pics to follow). I don't look like Heidi Klum, but for someone who just had major surgery I don't look too bad, either. I didn't really start gaining weight back until the New Year, about 6 months post-tx.
It was so nice to be out in the world again!

Also in August, I was named the Columbus Diocese's Young Catholic Woman of the Year at a banquet with Bishop Campbell. It was nice to be nominated, but I gotta tell you it was also nice to win. :) We had a nice ceremony and I got a lapel pin and a plaque that hangs on my apt. wall. Very nice, especially given the DeArdo family tradition of always being nominated and never actually winning.

I also did a lot of reading, a lot of DVD watching (what else???).

Random things I learned

Before I went back to work, though, I should probably share some random (warning, some of these could be graphic/gross, whatever, so proceed with caution) things I learned during the whole CF/TX experience (and I am still learning!):

--When they say "NPO" (nil per oral, Latin for nothing by mouth), they mean it. That means no water. So drink/eat up before the deadline, even if you don't feel like it, because trust me, you will in the a.m., especially if the procedure/operation isn't scheduled until like 2:00 pm. Or else you have to implement Emily's Law of Eating: NO EATING IN FRONT OF THE NPO GIRL. It is carved in stone. I have banished my parents from my "resort" room for this. Course dad has qualms about eating in front of me anyway...

--If you've been chroncially nauseous, keep plastic bags in your car. Know the locations of the nearest bathrooms in all movie theaters, shopping complexes, churches, etc. If anyone would like to know precisely where the bathrooms are at Easton, I'm your girl. If all else fails, locate trash cans, even though vomiting in public is not something I recommend. But I have done it. (Dad calls them my "exorcist" moments.)

--Barium's not that bad, especially if flavored with Quick. Just drink it fast, or "down it" as my mother says, and don't think about it.

--You will always wait forever in a lab. And radiology. It's a Law.

--Always bring a book. it's the times you don't have a book that you wait forever. And if for some reason the book doesn't work as a charm against waiting forever, at least you were prepared.

--It is usually cold in hospitals. bring a sweater or a jacket.

--ERs take forever. Always. And if things are moving fast it's usually not good.

-- Don't be afraid to ask for pain meds!! They have them!

--Anti-nausea drugs are God's gift to mankind

--Have one good pair of hospital PJs, like a t-shirt and pants, that come off easily, move with you, and cover all your vital parts. Also no long-sleeved things since they interfere with IVs and food. Victoria's secret Pink t-shirts (for girls) are a good choice because they are soft and move to adapt w/ various IVs and such. I wore a lot of their stuff after transplant.

--Get some fuzzy sock at Target or whatever to wear around. Those hospital socks get gross pretty quickly.

--hospital food is not that bad but make sure you know where the good vending machines are.

--if you're nice to nurses, they are nice to you

--There are always infomercials on at 2 am, which you will find fascinating if you can't sleep.

--Arterial blood gases are the devil!

--Sleeping in a hospital is a hit or miss proposition.



Thursday, September 28, 2006

Back on the homefront...

The first thing I did when I got home? rearranged my DVDs. Not even kidding. My mom and my Aunt Sue had redone my room--new paint, curtains, everything--while I was in the hospital, and my books and DVDs were all out of order. Since I didn't have the muscle strength or control to get down on the floor and re-arrange, I recruited my brother to do it, and when the DVDs were in order I was a lot happier. :)

I think I had Uno's take out that first night...for awhile it was what I wanted to eat, when I wanted it, but I couldn't really "go out" in public just yet, so we did a lot of take out. And I could eat whatever my stomach would handle, which, in the morning, wasn't all that much. I was still having issues with nausea in and out, but eventually we got it down so it was just in the AM, and then hardly at all, except for random times (like once in the infusion clinic).

Even thoguh I was "home" I wasn't really "home." I was at the TX clinic once a week and did pulmonary rehab at Children's three days a week from 8-noon (or 8-11 on Fridays). We did cardio, strength, flexibility stuff, and had session on goal-setting, time management and psychology stuff. I loved the stuff in the rehab gym because it was fun to watch all the other kids, especially the little ones, progress every day. Now that my lungs were working I could do all sorts of things, eventually, although I still have very tight tendons that we're still working on (yoga and pilates, baby). Working out after tx is important all the time, but especially right after, so you can boost lung capacity. Since my diaphragm had been "knicked" during surgery, it would take a bit more time for me to reach "normal" post-tx levels (which is about 70% at one year, where I am currently hovering) so I'm on a slower scale, but that's OK with me. Slow and steady wins the race.

We had to adjust med doses on and off for awhile to get maximum immunosuppression without me being subject to every bug in the universe. So that meant blood draws. We also did PFTs a lot to gauge how the lungs were doing. I also had my own FEV1 meter and PulseOx, so I could always measure those things and call if they seemed out of whack. One thing that's great about tx as opposed to CF is you have definite numbers to work with when something is wrong. In CF it's a lot more touchy-feely, like "I think something's wrong"--it can take awhile for the numbers/CXRs to catch up.

So Mom and I were doing the clinic/rehab/ and infusion clinic thing--I was getting doses of an antibiotic to combat CMV, a bug that can be a problem after transplant. I didn't have it, but my donor had, and while it doesn't cause problems for "normal" people it can be an issue if you're immuno-suppressed. So on Wednesdays after rehab we did the 2-3 hour infusion, which I usually just slept through or read a book. The nurses in the clinic are awesome, and since I have a port it was really easy to do.

This went on for eight weeks (roughly), so until the end of September. With things looking up, I tentatively scheduled my "return to work" for after Veterans' Day in November, where I would work half-days until Thanksgiving and then full-time after that. But there was a lot to do before I went back to work.

Monday, September 18, 2006

Homeward Bound

After a month of drug fixing, drug changing, and learning how to change the dressing on the sloooowly improving right arm, I was finally able to nail down a departure date from Dr. A. Friday August 4 (I believe) was the big day, and of course the media would be involved.
The morning off I was so off kilter I even threw up a few times. I had my first real bath (like my entire body got wet) since before tx, and it was amazing. Love the hot water. Getting out was a bit of a challenge since I hadn't had to use those muscles in about a month, but Mom and I managed to do it. I also put on make-up for the first time in a long time, since I was going to be photographed by the Children's photographer (Dan, who does a great job) and interviewed by Kurt Ludlow from CBS 10 TV here in Columbus.
Before I was released we met with Julie, the pharmacist, and got all my prescriptions filled from the local Kroger (they know us really well so that Julie could check them over. Karen gave us an extremely detailed schedules with all the stuff we would have to do for the first few months and we got all sorts of numbers and books and good stuff.
Around lunchtime, the Children's media team came in and we did a quick interview and took pictures of me signing my discharge papers and all that good stuff. The channel 10 team met us int he Education center where I had my interview (Kurt was really nice) and they filmed me walking out. It was a really hot, muggy day, which was a change from the manufactured coolness of the hospital.
With a hug from Karen and Dr. A (who seemed a bit reluctant to do so), I got in my mom's car and we were on our way home. Huzzah!

Wednesday, September 06, 2006

Media attention

So, in the midst of recovery and all this fun, there was also a minor media storm going on. Since I was the first double lung tx at Children's, this was media-worthy, but not until I was out of the CICU and it was sort of a 'guarantee' (if anything with tx is a guarantee) that I would make it.

It's kind of funny, because the weekend before my tx, I was in the paper, too, to bring publicity to the state's BMV donor registry, which you could now do online (DO IT RIGHT to your right (lifeline)!!!). A Dispatch reporter and photographer did a nice story, with pictures of me playing my piano (Beethoven's "Moonlight Sonata," my favorite) and a pulled quote and headshot deal. It was actually quite a nice story. But anyway.

So about a week or so after the surgery, the hospital held a press conference with Dr. A, Dr. G, "God," and my parents (they may have been more but I forget). Originally I had thought I would do it too but the day of I was a little out of whack, emotionally, so I didn't. But my parents did a good job. If you google my name you can find the articles. :)

There was print, TV and other media, and the story went all over the world! I even found it in foreign medical journals (again, courtsey of Google). It was really kind of amazing. It was also ironic--my whole life, I had tried to keep the CF as underwraps as possible. Now, the whole metro area knew, and then some, along with the tx story!! But since I had the bully pulpit given to me, I now use it to the best of my ability. (If you want a Donate Life bumper sticker/window decal for your car, email me and I'll send you one...we've got to spread the word, kids!)

Of course, the surgery was filmed, as was the press conference, and we're trying to get copies of both. The next time I would see this much media would be THE DAY I went early August.

Sunday, August 27, 2006

Long days and short nights

So while I had all these things going on during the day, there were other things that happened, too. This is probably more of a hodge podge entry, but here are some of the things I remember...

-Fr. Mark came around a lot. He had Wednesdays 'off', so he would come by and watch movies. One night we watched Phantom of the Opera which was a lot of fun. Would've been more fun if I'd sung along but I didn't want to wake up everyone. Hah hah. He also dropped by a lot during the day, which was nice.

-I got a ton of cards. My room looked like a Hallmark store, and I stil have them. They were great!!

-Eventually the walking got better. I actually started picking up my feet and walking like a normal person. :) But there were still days when it was hard to do. It's amazing how completely your body can abandon you.

-Eating was sort of a hit or miss proposition. The plus side was I could eat whatever I wanted as long as it would stay down. Maybe we should've done a stomach tx at the same time....hmm.....

-my friends came; Maggie, Michele and Aaron from work and the h.s. buddies. Branden was amazed that I could stand up and walk...he was pretty funny. I liked having them around and as I got mentally stronger and could focus longer they stayed longer.

-I caught up on all my old TV shows. Every day I could watch Family Matters, Step By Step, Full House (sometimes 4 episodes in a day!), all the old TGIF shows. Awesome. :) Of course I also had to sit through about 1000 viewings of Harry Potter III because it played constantly on the in-house movie channel. Grrrrr.....

-Eventually I started doing PT in the rehab gym, which was a lot better, because then I got to see other kids and many of them were just adorable. You ever want to complain about something, go down to the PT gym and you won't want to any more. Those kids are warriors, man. They are awesome.

After a month on the floor, I was getting ready to go home. I wanted my bed, I wanted real food, I wanted to go home. I'd been in the hospital long enough. Dr. A was awfully slippery about a release date....

Thursday, August 17, 2006

Boot Camp

So, I believe it was about 6 days after the tx, that I moved down to 6AW, aka "The Heart Center," where they were temporarily stashing all the tx patients until we got our own floor. The Heart Center had all the special monitors we needed and huge rooms (which were great)...I'm talking a room the size of a college dorm room. I had a mini-fridge, two big cushy chairs (dad loved that), and the rest of the normal hospital stuff. The reason they're so big is because they used to be double and triple rooms, back in the day, but now they were mostly singles. At least all the tx rooms are singles, because you don't want any germs after transplant. Everyone had to put a mask on and nurses and such had to gown up. Everyone looked really, really good. :) (lol)
So once I was down there, I thought "all right, here we go, just gonna kind of hang out." Oh, wrong. SOOO wrong. Not even close to being right in any estimation. No way. This was high-intensity boot camp, kids.
My days usually began at 6:00 a.m. Yes, 6 a.m. Now I am not a morning girl. Never have been. So this was not fun. At all. Especially since we were just taking a trip down to radiology. For like the first day or so I got rides down. But PT started immediately, so then I had to walk.
Let me explain why this was an issue. After transplant, just sitting up is a big accomplishment. Your chest feels so heavy that it's weird. For me it wasn't painful, it was just a lot of pressure. So then you try standing up. And walking isn't even walking, it's more shuffling along. Now I will give them props and say I didn't totally walk down unescorted (i mean, without someone even brining a chair) for two weeks or so. It was a awhile. But it wasn't a lot of fun. especially at 6 a.m., when I'm thinking, 'um radiology is open all day . Why do we need an x-ray at 6:00!?' (especially since Dr. Astor won't even be in to see me until 11????) But there was no room for discussion.
So every morning, CXR. Then the nurses would be magnaminous and usually let me get back in bed until the breakfast trays came. Getting into bed wasn't real graceful, it was more like flopping into bed. But I wasn't going for style points here.
Karen, after a day or so (if I even got that long of a grace period) taped a schedule to the bathroom door that I had to follow quite rigorously. It was like law. It included fun things like:

--Sit in chair after breakfast
--PT at 11 (which includede various things)
--Walking around the wonderfully landscaped 6AE four times a day with some unwilling victim. :) (Usually Karen, another nurse, PT, or Rita....yay!)
--do some crazy breathing treament
--have RT come up to do PT...even though I didn't technically have CF anymore they still wanted the chance to beat on me. :)
--more sitting up!
--eating...lots of eating
--IV therapy
--and the best part....massage therapy, woohoo!!! Because your joints and muscles get really, really cranky.

Kathy, my psych, would come most days, as would Dr. M and Teri (who even brough us Cosi food! Yay!), and Fr. Mark, bien sur . So it was good, some of the time. But it was very, very regimented. I was totally not used to that, because on the CF floor, when you're admitted, you just kind of lay there because you really can't do anything else. Sleeping is a big part of the day. Thankfully I was allowed to nap in the afternoons!

Tuesday, August 15, 2006

A little more coherent

Coherence, in the CICU, comes one day at a time, and you're not totally aware it's happening. While I wouldn't say I was totally with it while in the CICU, I was certainly much more lucid by the time I was discharged; lucid enough, in fact, to be a bit, well, stubborn. :)

Part of the therapy in the CICU is working with a Bi-PAP machine that helps expand your lung capacity, since you're not really breathing deeply and all that while you're in the CICU. Heck, you're hardly out of the bed. Now I know that it provides a very important function, yada yada yada, but I hate it. Really, really hate it. I hated it when I was in the ICU in 2001 and I hated it now. It resembles an oxygen mask except it's got like a Darth Vader vise like grip on your face, so that's really irritating, and it's hard to sleep with it on, because it's uncomfortable. Eventually I figured it out. (Like I said, I can sleep through most things.) The RT would always tell me how long it needed to stay on, and buddy, I watched the clock above the sliding-glass doors (which makes the CICU feel like a fishbowl) and I knew when time was up. I was able to stay sane exactly that long.

Well one night the RT came in and decided that we'd go a little longer. By now I had regained some strength and was able to manipulate the mask to give my face a break occassionally. Well I kind of threw a fit (yes, me a 23 year old). There was no way it was staying on any longer than absolutely necessary. So we went back and forth for awhile until Michelle, Savior of the World, came in. The RT explained the situation. Michelle stood there, glared at her, and said, "You told her two hours. Two hours is over. She's fine." She is sooo my hero (OK one of them). That was just awesome. And as we can see, I have suffered no awful lingering side effects from this unconscionable breach of etiquette.

Like I said in the last post, you have to actually practice fun things like sitting up! And going to the bathroom! And feeding yourself! (Which, for me, really didn't happen due to the hand) Speaking of the hand, it was bandaged in this huge swath of white gauze from the base of my fingers to about my elbow. I had to keep wiggling the fingers, even though they didn't do too much, so they didn't resemble overstuffed, purple-y sausages. Such is life. But it was OK, and we were starting to make progress. The cool water that was poured over it in copious amounts several times a day was a great thing, let me tell you. Speaking of water....I was thirsty as all get out. After lung tx, they keep you dehydrated because your lungs are sapped with fluid (I was even on a diuretic, which, let me tell you, was a lot of fun, especially when getting to the bathroom is like an Olympic event), so you can't drink anything. For days . And when you can drink something, it tastes funny because of all the saline and IV drugs in your body, which throws off your taste buds. So I would crave something, like Coke, and then I'd get it and it would be totally weird. Very disappointing.

The other weird thing about the drugs was I heard things that weren't there, like birds outside the window and the same Whitney Houston song playing over and over in my head. Yes, for some people that would be torture, but I like "The Greatest Love of All" so I was OK with it. And it didn't happen all the time. :) I even managed to read Harry Potter!! (Did I mention that before? Oh well, it's worth mentioning again because I'm proud of that, darn it.)

I believe I spent about a week (give or take a day) in the CICU before I was stable enough to move to the Heart Center. (6T, for you Children's kids... well, at least it was then. Now it's 5C in the new building and it rocks. But I digress.) Then the real fun began!

Saturday, August 12, 2006

For Catholics...if you were wondering

What the Church's position on organ donation is, here you go:

Catholic teaching on organ donation

By Rev. Larry Hostetter

In the April edition of the WKC the ethical implications of organ donation were raised. Given the importance of this matter, I would like to offer several clarifications from the perspective of Catholic moral teaching..

1. Organ and tissue donation is heroic and praiseworthy. As an act of charity, organ and tissue donation have repeatedly received magisterial support and encouragement. Indeed, Pope John Paul II in the encyclical Evangelium Vitae lists organ donation among "heroic acts," stating that, "A particularly praiseworthy example of such gestures is the donation of organs, performed in an ethically acceptable manner." (86) Equally clear in its affirmation of the goodness of organ donation are the Ethical and Religious Directives for Catholic Health Care Services, published by the National Conference of Catholic Bishops. Directive #63 states: "Catholic health care institutions should encourage and provide the means whereby those who wish to do so may arrange for the donation of their organs and bodily tissue, for ethically legitimate purposes, so that they may be used for donation and research after death." The teaching is thus clear: organ donation is morally permissible.

2. The donor must be dead before organs and tissue can be harvested. Equally clear in the church’s teaching is the insistence that respect for the life of a potential donor is maintained. In directive #64 of Ethical and Religious Directives we read: "Such organs should not be removed until it has been medically determined that the patient has died. In order to prevent any conflict of interest, the physician who determines death should not be a member of the transplant team." Clearly we should be concerned that organ donors will not have their lives interrupted prematurely. That the pope is also concerned with this question is seen in an address he gave to the Pontifical Academy of Science in 1989. In this address Pope John Paul states that given the difficulty of determining the moment of death there is a danger of prematurely taking someone’s life in an effort to gain a transplant organ. He called upon the academy, which is composed of eminent scientists from various disciplines, to examine this question.

This question attained a new urgency with the advent of technology that could keep a person’s heart and lungs functioning artificially. Traditionally death had been defined as the irreversible cessation of the heart and respiration. Now, new technology demands a more precise definition. While the traditional definition is sufficient in most cases, how does one determine death in the case of an individual on a ventilator? From this question arose the definition of "brain death" as the determination that death has truly occurred, making it possible to remove any organs for transplantation. As seen, however, in a recent letter to the WKC, the definition of brain death is not without controversy. Some question whether brain death is a valid determination of the death of a human being. After all, someone may be brain dead but continue activity associated with living, such as heartbeat and breathing.

3. The determination of death is left to medical experts. The reason the Pope consulted scientists on this matter is that it would be beyond his own expertise to scientifically answer the question, What is death? The Church, therefore, does not make any specific statement regarding the legitimacy of medically determined criteria for establishing brain death. This respect for the competency of science and medicine to answer questions in their own fields is a hallmark of Catholic medical ethics. This is seen as early as 1957 when Pius XII in "The Prolongation of Life" stated that the determination of death in such situations "does not fall within the competence of the Church." He stated that it is the physician who offers the final determination of death. (See, The Pope Speaks, 4: no. 4, 1958, 396-398.)

For this same reason, the present pope placed the question before the scientists of the Pontifical Academy of Science. What then were the conclusions of the Academy? The Academy stated that death occurs when "there has been an irreversible cessation of all brain functions, even if cardiac and respiratory functions which would have ceased have been maintained artificially." (See, Furton, Edward, "Reflections on the Status of Brain Death," Ethics and Medics, Oct. 1999, Vol. 24, No. 10, 3-4.) Hence, when the whole brain is dead, the person is considered dead, despite the fact that "residual cellular activity" may continue, either in the brain or other parts of the body. (Ashley, Benedict, Kevin O’Rourke, Health Care Ethics.’ A Theological Analysis, 4th edition, 1997, 403.)

The question remains, however, of the criteria for determining that brain death has occurred. This too is a medical question that should be decided by experts in the field. In Kentucky the definition of death is the same as that of the Academy, the "total and irreversible cessation of all brain function, including the brain stem." This must be verified by two physicians. (Kentucky statutes 446-400.) Various tests are conducted to make a determination that the brain no longer has the capacity "to integrate and coordinate the physical and mental functions of the body." (Furton, "Reflections," 4.) Again, the Church does not determine what those tests should be; that is left to the experts in the field of medicine.

Given these considerations, Catholics who desire to be organ donors upon their deaths should have no fear in performing such a charitable and heroic act. Edward Furton, the editor of the National Catholic Bioethics Center publication Ethics and Medics, offers the following conclusion: "Although no definitive judgment has been rendered, one may safely conclude that Catholic physicians may, in good conscience, employ brain death criteria in their determination of death. Similarly, Catholic patients may agree to give or accept organ transplants on the basis of these same criteria. If the Vatican should ever express reservations to the use of these criteria, it will likely be preceded by a widespread rejection of brain death by members of the medical community. There are voices calling for a rejection of these criteria today, but they would appear to be in the minority. (Furton, "Reflections," 4.)

Rev. Larry Hostetter, STD, is Assistant Professor of Religious Studies, Brescia University, Owensboro, KY

Tuesday, August 08, 2006

Some time later (OK, like 3 days?)

OK, so now time gets a wee bit fuzzy...thank you, wonderful, fantastic epidural drugs!

The surgery lasted 12 hours (I still hold the record for the longest single tx surgery at Children's, thank you very much), due to all the scar tissue and such that they encountered. While all of this was going on, my dad had the job of calling my friends. I had given him this job so he wouldn't be pacing the waiting room every 15 minutes driving everyone mad as he is prone to do. He called Branden, Tiff and Milia, and my boss, and the family. Branden took care of the rest of the world. :) (jk, Branden) Tiff was on vacation at Myrtle Beach (or somewhere in the Carolinas), and I had told her that the surgery usually took 4-6 hours. Well, when she didn't hear back, she panicked a bit, and didn't realize that my dad had resorted to the mass e-mail list I had created for him to update everyone very easily (he's a computer guy, this is easier). Eventually I believe Branden told her, no, I was not dead, the surgery just took longer than usual. Bryan and Melanie amused themselves by playing cards with Fr. Mark. People came out (Karen, I think) and updated them on what was going on so they weren't totally in the dark. The surgery was started by Dr. Terrance Davis and finished by Dr. G, who arrived after we'd started with the lungs. I have a photo in my bedroom of that moment--Dr. G coming in the OR, all scrubbed up, toting a Coleman cooler behind him with "organs for transplant" in bright red on an orange piece of paper taped to the top. Let me tell you, I don't look at coolers the same wayt anymore. A nurse is on the phone behind him, and I swear she's really ordering like 12 pizzas, or something. :) Later, the mat around the photo was signed by all the tx people: nurses, Dr. A, Karen, "God", Kathy, 4AE people, Tiff and Milia, my got nutty.

After the surgery was done, Dr. G, Dr. A and Karen came out to talk to my parents. The lungs were fine, but my right arm wasn't. Apparently one of the IVs had infiltrated during the surgery and burned my lower arm (like 2nd degree burns, I think), so they were worried about its' viability (I'll leave you to infer what that means). Obviously, no one was happy with this development, but by the time I had really come to, we knew the arm would be fine, so I didn't really worry about it. Another great thing about drugs: you really can't worry about anything. Someone could tell you the world is ending, and you think," Really? OK. Whatever." "Whatever" is a big catchphrase.

I was moved to the CICU and was still on the ventilator until 48 hours later (I think). The scary thing? No one went home . Medically, I mean. Bryan and Mel did, and I think Mom did at some point (I obviously don't know), but Dr. G, Dr. A and Karen stuck around for essentially 2-3 days straight. Major, major kudos. Major. My vent was pulled 48 later--apparently my first words were "this feels wonderful!" but I don't remember saying that. I didn't really come to until about 3-4 days later, I think. Not that I wasn't quasi-aware, but I wasn't really responding to anything, and I definitely don't remember anything.

Sunday, July 30, 2006

July 10, 2005 8:45 p.m. to July 11, 2006 at 7:00 a.m.

It was my cell phone.
And it was Karen.
My parents didn't know that. They just watched my face.
"Emily, hi, it's Karen."
"Hi." I knew what she was going to say. There was no other reason for her to call at 8:45 on a Sunday night.
"I think we have a pair of lungs for you."
I don't know what my face did, but I think I tried to keep it blank. Or at least calm, given that everyone was looking at me.
"OK." (my vocabulary was astoundingly, um, limited)
"We don't have them here yet. Dr. Galantowicz went to go harvest them, so we're not sure. They're from out-of-state. I'll call you back in a bit and let you know when to come down, since you live so close, OK?"
"Don't eat or drink anything else. Keep your phone close. I'll call you back."

We hung up and I just sat there, staring at the small electronic device that had just given me the best news of my life. The news that would save my life.

Everyone was still looking at me. I looked up. "Um...we've got organs, kids."
My whole family was in the room. I don't remember what they did, but I think one of parents asked, "Um, what ? Now?"
"Not now. They're in Minnesota. They're going to look at them."
"But they're for you?"
"Yeah. They match."
"Well what are we supposed to do ?"
"Nothing. Karen's going to call back. It's not totally definite yet until Dr. G looks at them."

Then people started to move. my parents went upstairs to start packing a bag. I went to the piano and Mel and I began to sing hymns or silly songs, loudly. I don't remember what Bryan did. We sang for awhile, including, bizzarely, "The Bear Went Over The Mountain." (don't ask. Really.)

Karen called again around 11. "Things are going slowly," she said. "Just hang tight. I'll call you again when I know more."

We said a rosary after that, the room dark, illumniated by a few lamps. My brother watched a sports highlight tape. I went upstairs to try to pack a bag, not sure what to bring. Something's Got to Give was in my DVD player, and I watched Diane Keaton and Jack Nicholson stumbled around her Hamptons house in a thunderstorm before I gave up on TV. I was too keyed up.

I threw some random things in a bag, and then we just had to wait. And wait. Until Karen called back around 12:45 a.m.

"OK, you can come down now. Head to the Emergency Department and we'll go from there."
"WE're going, people!" I shouted, as everyone headed for the car. It was so strange, all of us piled in my mom's Civic, Dad driving, at this hour on a Sunday night. Obviously no one was going to work the next day. I-70 was totally clear of traffic, and it was a gorgeous night. I held tightly to the doorjam and stared at the sky.

We got into the loop by the ER entrance, and as I got out the car, my father kept driving, running over my foot in the process and catching it at a bizarre angle. "Um, stop!" I said, as Dad realized what he was doing.

"Are you OK? The last thing we need is a broken foot," my mom said, scolding Dad.

"We're good." I grabbed my bag and headed for the desk.

"Hi, I'm Emily DeArdo, my doctor should have called down," I said as I came in, as I have so many times before.

The nurse sorted through the papers. "What are you here for?"

I closed my eyes briefly and laughed. "Um, I'm the lung transplant..."

Her eyes went wide. "Oh! You're the girl! OK!" She found the paper and hustled me into a room in the ER, where my vitals and weight were taken and other preliminaries were done. You want to get through the ER quickly? Get a transplant.

Transport took me up to 4AE, the last time I would be on this floor, since after transplant we always went to the Heart Center/ Post-TX floor to avoid the CF germs on 4AE. This would also be the last time I'd had the nursing staff that had taken care of me for the past 12 years.

The floor was silent, as befit the hour, and the only light came from the nurse's desk. As I came up, no one was quite sure what to do with me, since I was the first tx. They didn't have to give me anything, I was already accessed, thanks to the port, so I was shown to a room. I should've showered. If you are ever on a tx list, SHOWER before the surgery. Really. It'll be a loooong time before you can shower properly again.

I thought I would be on pins and needles, and in fact had warned Karen and Dr. G that I would be. But I was amazingly calm. I even managed to sleep a bit. Bryan and Mel sacked out in the multi-purpose room which was next door.

Karen popped in a few times, telling us what was going on. There were several delays on the Minnesota end, so the time for pre-op kept getting pushed back. Fr. Mark came up, heard my confession and prayed with us. I slept some more. Finally, at 6:45, transport and Karen came to take me and my parents down to pre-op. I said good-bye to Mel and Bryan and down we went.

I'd been in pre-op before, and I wasn't the only one; there was a little boy, dressed in the yellow flannels appropriate for his age, watching TV. I was blind by this point, since my glasses were gone, but it was OK. We didn't talk much. I had, while waiting at home, written out instructions for a funeral and letters to almost everyone I knew, just in case. I told my parents where they were. When facing a long surgery, it seemed like a good idea, and you never know. I've always been a pragmatic sort.

At 7:00, Karen came in and I was taken away...and I don't remember another thing until I woke up in the CICU two or three days later.

Waiting..and waiting...and waiting some more...

OK, quick housekeeping note: the modem on my Mac was fried during a thunderstorm, so I'm sending it off to Apple to be fixed. Blogging will, consequently, be light on both my sites, if not totally non-existent. So I haven't forgotten about you all, it's just I don't have a computer. :)

Anyway, back to the story. So shortly after the insurance brouhaha was resolved, and we returned from Pittsburgh, I was officially "listed" on the UNOS list. I 'debuted' (hah hah) at #1 on the AB positive lung list, so if any came my way that I could use, I was the first up. But, me being me, that wasn't going to be easy. For one, I was AB+. That's a pretty rare blood type. Second, I'm a "small animal" (thanks Piglet) so we needed small adult lungs.

Once you're listed, your life revolves around the phone. Karen had everyone's cell, home and work phone numbers (even my brother and sister). When the phone rings you get kind of jumpy. We knew that most transplant calls came at night/evening, but technically it could come anytime. I went to bed with my cell phone--I'm not even kidding. Once I was cantoring at Mass when I saw Dad get up and scurry to the vestibule to answer his phone. Well I just about had a heart attack on the altar. It turned out to be nothing, but I told my dad not to do that ever again unless it was the call. And we knew when that would be cause Karen would call us, and we had her number programmed in every phone, too.

To top off all this fun waiting, it was also budget time at work, which is the busiest time in the whole 2-year GA (it's coming up again next year...oh, the joy). My boss (the Chief of Staff) and my immediate boss (Maggie, the Communications Director) both knew about my situation (OK, the whole Senate did, because I had to ask people to donate extra leave time so I'd be covered) and they were, consequently, also in tune to my cell phone. Once it rang during session and when I left to answer it, Maggie'sface mirrored my own. It was kind of funny, having so many people waiting on my phone to ring. Teri (the Chief) was hoping that I'd make it until post-budget, and that I did.

By this point, Dr. M had "suggested" that I be on supplemental oxygen at night "if I needed it." This is what I loved about Dr. M; while she could lay down the law (and did) when she had to, she also made things seem more like "suggestions" than commands. While I don't know if the oxygen did me any good, we still did it.

On June 2, the day after we passed the budget out of the Senate (and some of the staffers were at work until 2 a.m. writing the release), I went into the hospital for a few weeks. My body was just worn out at this point, and all those "opportunistic" infections were having a field day. The other side to all this was the only drugs that were even somewhat effective were also, slowly, eroding my hearing, which kind of annoyed me, because I'm a singer. I'm in Communications. I need to talk and hear other people talking. But at this point, it was a choice between surviving and hearing. I chose surviving. We could deal with the ears later.

I think I was in the hospital about two weeks, until I went home on IV therapy (of course!!!) and the oxygen, even though it was per need only. Dr. Rusakow, the attending for June, did a stat study on me the night before I was discharged, where you wear an O2 probe all night and the machine mesasures your oxygen saturation at different intervals. The test came back OK, and right before I left he looked at the monitor and saw it was registered 97%. "I don't know anyone who's on the list for a transplant and has 97% sats without oxygen," he said.

"Yeah, but I'm weird."

So I went home with the fun drugs (that we actaully had to mix and constitute at home, because it was so unstable you couldn't make it ahead of time...that was fun) and the oxygen compressor thing, which ended up in my bedroom and raised the room temperature about 10-15 degrees. This would've been great in, say, January, but was not so great in June, especially when it was 75 degrees at night anyway. The tiny electric fan I had didn't help much.

So there was nothing to do but wait. I was started to get a wee bit anxious--what if I didn't get them? What if I became one of the 18 people who dies everyday waiting? I saw Dr. A every week and he kept saying that we'd find them. I trusted him, but I still didn't know. Work was getting ridiculous. Even though I went every day (why, or how, I did that, I still don't know) but I only worked until 3:00 because I had to go home and get drugs. There were some days I just could not get there, and Maggie was good about that, but those days didn't happen too often. Most of the time I was just trying to stay awake. I couldn't walk from one end of our office to the other without feeling like my heart was going to beat out of my chest. It was rough sledding. Each day that I woke up and the phone hadn't rung was horrible. If I could have willed the phone to ring, trust me, I would have. So would the 90,000+ poeple on the list.

June turned into July, and eventually my biggest pasttime became sleeping. I would spend entire Saturdays camped out on the couch, just sleeping like a cat. I hated doing that, but it didn't seem like much else was going to happen. Fourth of July was horrible--hot and muggy. My friends wanted to walk the 1/2 mile or so to downtown Pickerington to watch the parade, but I couldn't a) walk it and b) sit in the sun for 2 hours. So I drove home, feeling frustrated because my body was totally prohibiting me from doing anything at all.

Even shopping, one of my all-time favorite things, was tough. Easton, an outdoor shopping center in Columbus, is one of my favorite places to go, period, because it has great shops, food, and a theater and movie complex. it's a great place. But I couldn't do it without my dad dropping my mom and me off at one store, picking us up when we were done, and then driving us to the next one. It was very exhausting. One Sunday night, July 10, we went to three different stores, had dinner at the Irish pub (mmmm), and I bought a new bag for work. We left around 6, my body totally exhausted.

Around 8:00 I was perched on the couch, slowly taking my evening pills so as not to disrupt my stomach, and was thinking of ways to get out of work the next day. OK, so most people do that, but I was trying to think of something better than "I just got run over by a truck."

Then the phone rang.

Tuesday, July 18, 2006

Last vacay

So that Memorial Day my family and I headed for Pittsburgh to celebrate my grandpa's 80th birthday at my Aunt Patty's, as well as take the annual (mostly) family pilgrimage to Kennywood (favorite theme park ever!). True confession: I probably shouldn't have gone on the trip. I wasn't feeling great, but I knew this would probably be my last chance to see everyone before the surgery, so I thought I better get it in now. And I didn't want to screw this up for my parents, since it was grandpa's birthday and everyone else (except Aunt Mary's family, who was in London/Rome/Tuscany/Greece) would be there.
The party was awesome--I got to see all my cousins, including Diane who had just graduated from ND, and Ryan, who I always loved seeing. :) The Kennywood day was also awesome, and I managed to keep up with everyone pretty well. But I could not believe the number of people smoking.....ewewww. It was just gross. But I did take Ryan on his first coaster rides; Jack rabbit, racer, extertminator, and told him to hold on tight on the Jack Rabbit since I didn't want him flying out on the double dip and then Aunt Patty would kill me. :) But he did very well. My cousin Carrie and Uncle Rich even did the sky diving/bungie jump thing they have at amusement parks, which cracked me up. You would never get me up there. So a good day for all of us, and a nice trip.
When we got back, I was officially "listed" and then we began the wait...

Pics are from Pa's birthday party: me and Diane, me and Ryan, and grandma and pa eating cake in Aunt Patty's kitchen after the party.

So to back track

OK, so you know we've hit the one year, but anyway. To continue the story...

I met Dr. Astor for the first time in September of 2004, after I had started my statehouse internship. He was from Colorado by way of Boston and D.C., where he did his residency (or med school, whatever). I was so glad that Children's was finally getting a lung transplant program. A few months later I also met Karen, who I liked tremendously. She used to work at Lifeline of Ohio on the other side of donation--working with the families and getting organs to recipients. She's from Canada and has her nursing degree, and has the most adorable husband and puppies. :) In fact, she got married three months after my transplant.
When I first met Dr. A, he agreed that I didn't seem quite ready for a transplant yet, but it was coming. I think after seeing me at Christmas with my pancreatitis, and then again the following March, after I'd begun working for Senator Cates, that he joined Dr. M in saying that I had to get listed ASAP. So at the end of March, after my hospitalization, I began the work-up at Children's, which was a lot of stuff you just don't think about. I'd actually done a bit of it before that, such as:

--having my sinuses drained, which I'd never had done, and is very important since all sorts of bacteria can hang out there ane cause trouble later
--visiting an OB/GYN to make sure I was medically sound in that department
--having my dentist do whatever she needed to do to my teeth because dental hygenie is very important pre- and post-transplant (even more so than for the general population).
--A VQ scan, to see how well your lungs distribute certain gases

In March, I had:
--Complete PFTs
--blood work
--an ECHO and an EKG to make sure my heart was OK
--a bone scan
--CT scan
--ultrasounds of my pancreas and abdominal areas
--6 Minute Walk test with PT
--social evaluation with Laurie, the Children's tx social worker

So that was a fun few days. After all the data was collected, a profile of me was compiled for UNOS and we spent the better parts of April and May arguing with my insurance company about the need to transplant me at Children's. Finally, they said OK--since I was going to be the first (or one of the first), some haraunging was involved. But no matter. I was officially listed at the end of May, and then immediately put on 'hold', since I was going to Pittsburgh for my grandpa's 80th birthday party.

Tuesday, July 11, 2006


Yes, friends, today is the ONE YEAR anniversary of my double lung tx. I know I am getting ahead of the story, but I just had to write something today. I cannot believe it's been a year! Thanks to all my friends, including the Dulmages (who are awesome!) who have remembered today. And Chicago to celebrate this weekend!! Woohoo!

Saturday, July 01, 2006

Becoming gainfully employed

Around the beginning of August, I was starting to get kind of anxious about my job prospects. I had sent out my resume and writing to samples to a few companies in D.C., hoping to get hired, and had interviewed for an internship position with the state legislature, but had been told I was put on the 'alternate' list. While I was enjoying my campaign work, it was becoming increasingly evident that I need to, um, get a job. A real one. With money.

Fortunately, I got a call in the beginning of August from the internship program, saying that they had an opening and would I like to come work for them? I really didn't need to think too hard about that one, said yes, and began work as an intern in the Ohio Senate August 16, 2004. It was a paid internship (I made good money) and I got to work with three Senate offices, as well as write the internal memos for the GOP staff for the Finance and Ways and Means and Economic Development committees.

This was a fun job, as I enjoyes using my degrees and working close to home. The people were (are) fun, even though it was quiet as a tomb around there because it was a campaign year and everyone was home for the summer, campaigning. I was managing to stay fairly healthy, even though I did have two hospitalizations for lovely pancreatitis, one in October and one in December. But that can happen to anyone, right? So I didn't 'let the cat out of the bag' just yet. No one technically had to know. :)

November was good to us--we retained our majority in both the Ohio legislature and Congress, so all was well. I also accepted a job working for Sen. Cates of West Chester as his adminstrative asssitant when he became the Senator for the Fourth District in January. So I had money and health insurance of my own! Woohoo!

Wednesday, June 28, 2006

Demon Clinic Round II

So my parents were somewhat indisposed come my next trip to Cleveland, so my Aunt Sue and her husband, my Uncle Rich, and their youngest daughter, Carrie, decided to take a road trip with me up to Cleveland, because they'd never been there and thought it would be fun. (Hah hah!) Carrie, especially, would enjoy it because of the Great Lakes Science Center and aquarium, since she loves animals, particularly ducks (or at least did at the point...not so sure about now). So armed with another lovely itinerary and a small suitcase for the overnight--we were actually going to stay in a real hotel this time, as opposed to the gloom-inducing guest house-- we headed up to Cleveland.

We made good time until we got to the city and discovered that inside Cleveland, or anywhere close to the clinic, there is not an abudance of Days Inns, or whatever. So we drove down Euclid Ave. in search of non-dodgy lodging. Let me tell you--Euclid Ave. is, essentially, 300 blocks of ghetto. I didn't even think that was possible until I saw it. And, of course, it was raining on and off. My aunt, uncle and I were not too thrilled to be in this kind of neighborhood, but Carrie didn't seem to mind, rolling down her window and chattering until my aunt firmly told her to roll up the window and keep it up. Carrie obeyed but I'm not sure if she knew why. :)

Eventually we ended up in a 'suburb' outside Cleveland, about 20, 25 minutes away from the clinic, where we found a Hampton Inn (with a pool for Carrie, eve better) and a Joe's Crab Shack, where we had dinner. The reset of the night was spent in the hotel, since the neighborhood was kind of shady, and we needed to get up early the next day, anyway.

We got out of the hotel quickly the next morning and had breakfast at a 'safe' McDonald's. :) Aunt Sue went with me to the clinic while Uncle Rich and Carrie explored Cleveland's cultural and scientific wonders.

I went through the normal test battery--CXR, blood draws, 6MW (6 Minute walk, for the uninitiated), and all that, including the PFT test that requires you to hold your breath for 10 second while they measure Co2 (I think) distribution through your lungs. The fact that I couldn't hold my breath for 10 seconds really irritated the tech, but the whole time I'm thinking if I could do that, I wouldn't be here! Hello! When we did the 6MW, if my stats dropped even slightly, they wanted to hook me to oxygen. I mean, these people are just chicken littles "R" Us, let me tell you.

I met with a different doctor, who could not believe that I wasn't on home oxygen, given my numbers. He asked me a bunch of questions to see if I needed it, like "do you get dizzy? Lightheaded? Blackouts?" etc., etc. After I answers "no" to all these questions, you could tell he thought I was making it up, or something. So he started talking about home O2 therapy, and I'm thinking heh, heh, whatever. Unless God to me to do it, I wasn't gonna. These guys weren't my docs yet.

Fortunately they let me go, with another appointment in 3 months (they wanted to start seeing me more "often", oh the joy!), and we managed to get home without incident. Until the clinic called a few days later...