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!

The Sesame Street Personality Quiz

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!

The Muppet Personality Test

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

What Kind of Pie Are You?

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!!

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???

famous--again!

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!!!

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" update...it 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.)

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.

Post-biospy

The biopsy yesterday went pretty well...so 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!!

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...

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...

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)

Izzy says "Donate Life!"

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

http://www.parade.com/articles/editions/2006/edition_10-08-2006/Heigl

Link on the right...you know what to do.

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.

--DO WHAT YOUR DOCTOR TELLS YOU

--TAKE YOUR MEDS ON SCHEDULE!!!

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.

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!

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 NOW....link 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 home....in early August.