Saturday, September 29, 2007

Jane trivia time!

OK y'all who read Jane Austen books and never know when "Michaelmas" is?
It's today. As in Sept. 29th, the feast of St. Michael (and Raphael and Gabriel, but given that St. Michael is sort of the one who beat Satan in battle, the day gets named after him :).
So when Mrs. Bennett tells Mr. Bingley that she heard "he'd meant to give the place up entirely by Michaelmas," you now know what the heck she's talking about.
Don't worry. You'll thank me later. Now go watch Pride and Prejudice. :)

Friday, September 28, 2007

Benefits to IV drugs

There are some benefits to being on IV drugs that inhibit appetite and, therefore, your options outside the house:

--if you don't wear mascara for a few days, your lashes look REALLY GOOD when you finally put it on. :)

--People are always asking me how I take care of my skin. Honestly, genes and taking care of it (lotions and potions) are part of it, but I really think the other part is there are times when I go days, weeks, without putting anything on it. No make-up, nothing. I mean, when you're bonding with the toilet seat, how much make-up do you really need? Hello?

OK, so these are mostly cosmetic benefits. But they're something, right?
It is a beautiful day here, my stomach is sort of cooperating, so me and the parents are going to eat lunch and generally live outside the house. :) :)

Thursday, September 27, 2007

Fall rocks

At Branden's, September 1, for Tiffy's 26th (!) birthday...and the Buckeyes!

More ME!

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

In the news...annonymously :)

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

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

It is NOT in my head!

There are many things in my head, but delusions of pain ain't one of them.
A lot of times when I get a lung infection, I get pain with it. In fact, pain is often a precursor to any data of infection showing up in PFTs, CXRs, etc (as it was this last time). So when it happens I pay attention to it.
Well some people that take care of me like to relegate it to a subconscious creation. This is usually phrased as, "are you anxious about anything? Worried?" or various other forms. It can also come as "wow you're having a lot of pain for this amount of infection."
I just think the anxiety question is about the dumbest one on the face of the planet. Well let's see. I'm having chest pain, usually very sharp, constant chest pain, if I'm making an issue about it. That usually means infection. That's not fun. That could lead to rejection. Also not fun. So yeah, I may have a bit to be worried about. But the worry is not CAUSING the pain. The pain's already there. Now, I'm sure that being physically uptight and anxious is not helping. Relaxation tapes, etc. like the ones Kathy makes me. And those help. But they help to an extent. And that's it.
Pain is real. It is not all in my little head, I'm not making it up because I want good drugs or need attention or whatever. If I'm having it, I would like people to pay attention to it. Thank you.

Tuesday, September 25, 2007

Home again home again, jiggity-jig

And we're back...hopefully for longer than 36 hours.
But first!----HAPPY TWO YEAR, AMBER!!!! :) :) :) We are great! (Well, OK, you are great)

I got home around 3:30, I priest (Msgr. Funk) came to visit, which was great, because he's really nice. My stomach is still a bit out of it, but that's OK, too, I'll just go slowly. We're doing IV drug every 8 hours (not too bad) and then once a day levoquin (also not too bad), and I have a script for oral percocet (again, pretty good). Since I didn't sleep at all last night, I'm catching up on it today, and will be at the parents' house probably until Friday, until I get the IV system down. Not that it's hard, but you never know if something's going to go amiss, and if it does, I'd rather be here. :)
Also read Nicholas Sparks' new novel The Choice, today, which was really good, although I had no idea where the book was going until I hit the second part. But I really liked it--great characters and setting, as always in his books.
So back to the homefront, and all that that entails...
Oh, and my transplant buddy K (little heart t/x) was riding her tricycle in the hall way today!

Don't call me at 3 a.m...

OK so I'll blog instead...
Not much going on. Can't sleep so I thought I'd blog...
Nauseous a bit so I got a zofran dose around 2. At 6 I'm due for my next percocet.
Wonder if I should just stay awake for that.
Quiet on the floor, lots of babies, apparently, that need fed on schedule so they keep their weight up. It's amazing how much emphasis is always put on weight GAIN in a hospital. The idea of losing weight it really a foreign concept, at least on the floor I tend to hang out on.
CAught up on some email...even at 3:30 I'm thinking about work. Think that's a sign of something bad? If I had my journal I'd be writing in that, but all I've got it this.
Elizabeth is my nurse tonight and she is awesome. I think she's about my age, which is fun. I have come to the conclusion that nurses know more than doctors about 90% of the time. At least.
Oh! And today is Amber's TWO YEAR ANNIVERSARY!!!! :-

"Don't call me at 3 AM"

OK so I'll blog instead...
Not much going on. Can't sleep so I thought I'd blog...
Nauseous a bit so I got a zofran dose around 2. At 6 I'm due for my next percocet.
Wonder if I should just stay awake for that.
Quiet on the floor, lots of babies, apparently, that need fed on schedule so they keep their weight up. It's amazing how much emphasis is always put on weight GAIN in a hospital. The idea of losing weight it really a foreign concept, at least on the floor I tend to hang out on.
CAught up on some email...even at 3:30 I'm thinking about work. Think that's a sign of something bad? If I had my journal I'd be writing in that, but all I've got it this.
Elizabeth is my nurse tonight and she is awesome. I think she's about my age, which is fun. I have come to the conclusion that nurses know more than doctors about 90% of the time. At least.
Oh! And today is Amber's TWO YEAR ANNIVERSARY!!!! :-D

Monday, September 24, 2007

We're back!

Oh nback in a big way, here at The Resort...
Discharge on Friday, and felt OK. Spent the night at my parents--well most of it--before driving back to my apartment. Sat. was spent relaxing, napping and trying to work off the drug side effects from Thurs./Fri. I made a coffee cake, did a little bit of cleaning (as in throwing away old mail), organized some books, and watched Season 3 of Desperate Housewives. Since I had to sing 8:30 I went to bed around11.
WEll that didn't work because I got very suddeny, very severe chest pains. Which necessitated a call to the powers that be, which led to an appearance in the ER at 1:00 a.m.I was put in a chair and immediately taken back to the "critical care rooms", which are just stocked with every medical goody known to man. I had my port accessed, blood drawn, supplemental oxygen given, BP cuff, vitals every like 15 minutes. I got some dilaudid via IV and a CXR was taken. CT wants a scaned with contrast, which meant the lovely hurt for a peripheral, which eneded up in my thum. We got the pictures, not as clear as we would've liked b/c we used a very small guage needle (all my veins could handle without blowing), so then it was back toa regular ER room while they made room for me up on C5.
We got up to C5 around 6. I had the lovely Medical Resident take my history and drug list, then the nurse came in w/ more dilaudid. At this point I think I slept for maybe 45 minutes. Dad was still with me. NO sleeping. But we did watch most of Spanglish, which is a movie we enjoy.
Sunday was spent basically throwing up everything I ate. So we did ativan for that, which I didn't know you could use for nausea, but it worked. It also gave me the sleep I hadn't had in, oh, 20 some hours. Wooohoo! Dr. A comes in today around 10:30 and tells my nurse he can't wake me up. Elizabeth says, "she only fell asleep at 3 and hasn't slept for about 36 hours."
Basically today was about pain/nauseau management. There is a pneumnonia going on and we're doing an IV drug as well as the oral levoquin. I"m a wee bit nauseous right now but nothing like yesterday. Ugh. HOpefully bile stays where it belongs. We're doing oral pain meds every 12 with tylenol in between if I need it. I just want to sleep normally tonight.
Ian went home early this morning but we got to see him on Sunday. He looked really good and so adorable. His new sister (Sophia) is due in November! I bet his sisters will be so happy to have him home. And my friend Kennedy (another heart t/x) is also on the floor now after coming out of the CICU. So there are friends here. Yay!
All right that's your update. I've been reading a ton of magazines, as usual, and sort of watched the Steelers win yesterday (Oh happy day!).

Friday, September 21, 2007


Well apparently the visit to Shangri-la turned into a sleepover! Ha!
I went in on Thursday and while the numbers were all stable, I was still having some symptoms--rattling in my chest, increased cough, a wee bit short of breath. And, of course, chest pain (which I know and love...ha). Dr. A looked at my CXR and said that if I wasn't having any symptoms, he'd probably say it was normal looking (or at least stable), but since I was having some issues, it would be best to bronch and see what's happening.
So off to the bronch suite we went! Pretty normal there, and we did find some buggies in the initial findings, so Dr. A didn't know if we'd want to do IV drugs or orals--it would depend on what grew out over the next 24 hours. So I stayed the night, getting IV drugs (well, one) and oral antibiotics. I also got the lovely dilaudid/phenergan combo (whoever was the doc on call last night REALLY loved me. :-D), but I'm doing OK now.
I was dischraged around 4ish, and it's all oral antibiotics so yay! I go back in on Monday for another CXR and blood work.
Had some excellent nurses (like always), and overall not too bad a stay. I won't go so far as to say it was "enjoyable" but it wasn't like being in Hell for 36 hours. :)
My little buddy Ian (heart t/x) and his mom were also on the floor when I was there, so I got to see them today which was fun. Ian is the sweetest little guy and he finally gets to go home on Monday! Yay!

Wednesday, September 19, 2007

Going to Shangri-La....

Tomorrow, anyway. Should be fun times with Dr. A and crew. Woohoo! Hopefully it will be an easy visit without any sturm un drang. :)

Sunday, September 16, 2007


2-0 baby.
49ers next week, so we'll see what happens...the Football Oracle (aka my dad) says that we should win.
And what is up with the browns?! Maybe I should root for them more often--except when they play the Steelers, of course. :)

Saturday, September 15, 2007

Fall is here!

Today was the first real fall day in Central Ohio--perfect for an Easton trip and football! I bought a great outfit at Ann Taylor, enjoyed some shopping and a Fado lunch with Richelle and Christine, and had dinner with my parents. Overall a great day (with Buckeye Victory...). I just love fall.
Appointment w/ Dr. A and Dr. H this week on Thursday, so look for updates...

Also, pray for my little transplant buddies, Ian and Kennedy. Kennedy just had another heart transplant, and she's only 5 or 6! She's a trooper. Ian also had a heart transplant awhile ago, but he's in the hospital now. He's a sweetheart, so I want him to get better. :)

Wednesday, September 12, 2007

More diaries

April 14, 2005

Stayed home today--joints complaining. Ugh.

April 28, 2005

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

May 3, 2005

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

May 12, 2005

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

May 15, 2005

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

May 24, 2005

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

Diary entries

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

December 1, 2004

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

December 2, 2004

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

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

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

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

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

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

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

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

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

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

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

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

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

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

March 24, 2003
Holy Thursday

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

March 28, 2005
Easter Monday/ Octave of Easter

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

Tuesday, September 11, 2007


From WebMd:

Lung Transplant Survival Improving
More Than 63% Survive for at Least 3 Years, Experts Report
By Miranda Hitti
WebMD Medical NewsReviewed by Brunilda Nazario, MDMarch 15, 2006 - Good news for lung transplant patients. The odds of survival for this risky surgery are getting better.

A report in the American Journal of Respiratory and Critical Care Medicine details the improvement. The report shows that nearly 56% of people who got lung transplants in 1988-1994 survived for at least three years, compared with 63% who got lung transplants from 2000 to 2003.

Data came from the 2005 Official Report of the Registry of the International Society for Heart and Lung Transplantation. The researchers were Marc Estenne, MD, of Erasme University Hospital in Brussels, Belgium, and Robert Kotloff, MD, of the University of Pennsylvania.

Latest Lung Transplant Numbers
The report details findings for 931 bilateral lung transplants (in which both lungs are replaced), 772 single-lung transplants, and 74 heart-lung transplants in 2003.

Though survival has improved, lung transplantation still carries serious risks including infections and rejection of the transplant by the patient's immune system.

Lung transplants are usually done as a last resort after other medical treatments fail for diseases such as emphysema, pulmonary fibrosis, and cystic fibrosis. Afterward, transplant patients must take medicines for life to reduce the chances that their body will reject the transplant.

Expanding the pool of organ donors is a key priority, note Estenne and Kotloff. They also call for new ways to predict and avoid complications from lung transplants.

Long Waiting List
In the U.S. today, there are 3,099 people waiting for lung transplants and 148 awaiting heart-lung transplants. Those figures come from the Organ Procurement and Transplantation Network (OPTN). The United Network for Organ Sharing runs OPTN under contract with the U.S. Department of Health and Human Services.

In 2005, nearly 3,500 people in the U.S. were on lung transplant waiting lists and 1,000 got lung transplants, according to the American Lung Association.

Considering becoming an organ donor? The U.S. Department of Health and Human Services offers this advice:

Indicate your intent to be an organ and tissue donor on your driver's license.
Carry an organ donor card.
Most important, discuss your decision with family members and loved ones. Your family may be asked to sign a consent form in order for your donation to occur.

SOHC 13: from the Corner

Personal anecdote time:

Having just undergone prostate surgery and a somewhat-problematic recovery, I’d like to share a couple of personal reflections about the state of health care reform.

First, it is evident to me that the consumer-driven health care movement is starting to take hold. I’ve never been much of health-care consumer myself – the last time I had surgery was nearly 20 years ago, to stitch together my broken arm after a bizarre newspaper-delivery accident – but I was married to a diabetic with numerous medical complications and spent many years in and out of doctor’s offices and hospital rooms. Things have clearly changed. For the first time, I was actually presented up-front with the price of a procedure, and informed of alternative treatments with different prices and prognoses. Also for the first time, I did not have to explain what a health-savings account was to a medical provider. That’s progress.

Second, I was glad that I lived in the United States and not Canada when, having just come home from the hospital, I read a CBC piece about the severe shortage of urologists in the medical paradise to our north. The waiting time for urology patients in some parts of Canada is now almost a year. For those afflicted with prostate cancer or other serious ailments, such a wait isn’t just an imposition – it’s a prescription for severe pain or worse. In my case, I had my choice of skilled surgeons, a choice informed by word-of-mouth and my personal physician’s advice. And the earliest surgery times available were just a few weeks from the decision date.

In addition, I had no doubt that the urologists in my region (Raleigh-Durham, NC) were up on the latest discoveries and surgical techniques, whereas in single-payer countries the resources devoted to innovation and research are woefully inadequate. They can rely on American ingenuity to some extent, but I prefer to tap my expertise at the source.

Now a complaint: there were still way too many paper forms to fill out and redundant medical questions to answer from multiple docs and nurses. To some extent, I am told, there is a value to redundancy. Patients don’t always remember their histories accurately, or even honestly, so multiple prompts can elicit critical information. But still, we remain a long way from capturing and sharing medical information as well as we do other consumer information. No matter which oil-change location I go to, the mechanics can quickly call up the previous-service record for my car. Let's get on with it.

Sunday, September 09, 2007

Go Steelers!

Yes, win over the Browns! Ha!
You know when you keep your starting quarterback in for at least the first half, you've got issues. And it's not the offensive line, or the coordinator.
:-D :-D

Saturday, September 08, 2007

The "Fat Man" and his great art

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

Wednesday, September 05, 2007


Choir starts back tonight!! Pizza after "rehearsal" (more of a meeting, the first week). Hooah!

And the CI is really working beautifully. Hopefully it will keep getting better. :)

Saturday, September 01, 2007

Daily schedule

Just in case you ever wonder, "so, what's a 2 year post-tx patient's daily schedule like?" I present you mine (this is for a weekday):

6:20: Alarm goes off.
6:30-7:00: shower, dress, hair/make-up
7:00-7:15 (roughly): breakfast (usually cereal and coffee) and meds, which are:
--prograf (anti-rejection, 1 mg)--8:00 AM but I have a one hour window on either side. This gets taken Q12 (aka, every 12 hours)
--vfend, an antibotic that's given prophylactically (meaning to keep scary things from showing up. Most people are more dangerous to me than I could ever be to them.) This is twice a day.
--acyclovir, another prophylactic drug (twice a day)
--If it's MFW, Bactrim Double strength (DS)--my old friend! Also antibiotic.
--Slow Mag tablets, 4 at 200 mg each (the anti-rejection drugs mess with your metabolism levels)
--Prednisone, 10 mg, a steroid (leads to the puffy face...mine's not too bad...the tummy and the occasionally swollen fingers). It was 15 for awhile but I begged (not too hard) to have it bumped down. This MUST be taken with food or milk (like the bactrim) because 1) it tastes nasty and 2) if you don't, you get lovely stomach issues. And as we know, my stomach generally hates me anyway.
--Humalog insulin, usually 5 units, depending on what I"m eating> I get 1 unit per every 12 grams of carbs I eat.
--a multivitamin w/ iron (since I"m anemic--always have been)

After breakfast and the pill regime, I head to work. I'm there about an hour before everyone else to do the early morning paper clipping.

9:30: 2 hour post blood sugar check. Usually eat morning snack around 10 and am drinking water (flavored, of course. For some reason my stomach really doesn't like "regular" water.)

11:30: Lunchtime! That means imuran (anti-rejection med), which is due at noon (again, an hour window), and humalog (usually about 7, unless I do Chipotle, which is an 8 or 9. Thank God most restaurants now have carb listing on their websites so I can figure it out pretty accurately.)

1:00-3:30 (or 4:00, if a session day): work

4:00 (or 4:30/5:00): home. Reading, Bible, work-out, etc.

5:00-6:00: make/eat dinner. More humalog. And more slow-mag. Usually calcium supplement here, too, since I don't usually have milk with my dinner (if you take calcium supplements while eating dairy or drinking milk you don't absorb as much.).

EVENING: M--sometimes Parish Council, W: Choir 7-9 (longer as we get closer to Christmas or Easter), Spiritual Life, baby-sitting, etc., etc. If I'm "home," then it's reading, practicing my music, and/or writing/working on my extraneous projects.

8:00 PM: Prograf time!
9:00 PM (roughly): Lantus insulin injection--this is a "24 hour" kind of thing that keeps my blood sugar levels fairly steady.
Evening pills around now, if I"m home, or whenever I get back:
---lipitor (anti-rejection meds raise cholesterol, even in babies)

---MWF: the "pink" antibiotic, whose name I am forgetting.
---My second calcium
---The other 2x (Q12) drugs I listed in the AM.
So that is the drug regiment. BUT no more PFTs, nebulizers, etc! Huzzah!!!!!
I ma usually in bed by 10:30. I read/write in my journal before bed.

On the weekends I haul myself up around 8:15 to take Prograf, but other than that it's the same thing. Today I was at Branden's and gave myself insulin before lunch, as usual. Branden looked at me and said, "you didn't even flinch." I then explained that the only time the injections hurt is when you do it wrong (I.e., in the wrong place). Since I hardly ever do it wrong, it doesn't hurt. It's a small needle; they're designed to go in as smoothly as possible.

This may look like a lot but it's actually easier than the CF drugs were. I mean, my stomach would just KILL me on those. When I had MAC bacteria, I would be on a three drug cocktail. There was one time where it was those drugs, bactrim AND Cipro (which is strong and nasty. It's what they give you for anthrax!). Whew. That was nuts.

Of course there are occasional IV issues, but those are different story and I'm not jinxing myself by talking about them!!!

A face with the name

I was reminded last night of a story my mom told me in 2006, when Children's was running clips of my story as their feature on Channel 10 (the local CBS affiliate). Friends of ours were watching and they have three kids. The middle daughter, after watching the piece, turned to her mom and said, "Mom, I would give her my lungs."

(Insert cute noises here)

Besides it being just a cute story, it illustrates the main reason why I decided to be so "public" about my transplant and the events leading up to it. If people can put a face with the cause, the need for transplantation, I think the impetus for them to donate becomes much stronger. It's one thing to say that 18 people die in the US every day because enough organs are not donated. It's another thing to say that Person A is a computer scientist, with four kids and a dog and wife and who has season tickets to the Buckeyes. And that Person B is a six year old girl who loves Dora the Explorer and bath time with her baby brother but needs a new heart so she can play on her swing set and take dance lessons again. Or the college student who needs a new kidney so he can go to class instead of dialysis three times a week and keep studying criminology and play his violin with the orchestra.

Faces are so important. They bring the entire issue to vivid life.