Clinic update

I had my regular clinic appointment last Monday, and all was well. The wrap:

• New needles for port access; mom got it on the first go when she accessed me a few weeks ago with the 1" needle. Apparently port likes 1" needle now, the 3/4" needle is a bit wishy-washy. Besides the fact that the 1" needle looks super-scary when being inserted, it actually lays under the dressing quite nicely and goes in very well. So that's a plus.
• CXR looks excellent.
• PFTs also excellent. 62/57, if you're a number person. If not, um...I can't explain what they mean. I think they mean this: the 62% is how much volume I blow out in 1 second, and the 57% is my lung capacity. Course they could be reversed. Either way, much better than pre-tx!
• Some med changes: I asked for my celexa to be knocked back to 10 mg. We upped it in 2006/2007, when I was in and out of the hospital and we thought it would be better at 20 mg. Which was fine then, but we never knocked it back down. Now I'm back to 10, and liking it so far. Drs. A &K also want to knock down the vfend from 200 mg to 100 mg. Vfend is a strange little drug that very few people take--I get a lot of 'huhs?' when I put it on med lists. It's a pre-tx antibiotic (meaning, I've been on it since, oh 2002? God prescribed it.). I guess since I"m about to hit 5 years, the chance of the bug coming back to cause problems is lessened, so we can knock it down to 100 mg. This makes me happy--the fewer drugs I'm on, the more I like--but it also can affect my tac level, so on the 14th I need to have a blood draw to check all that. Obviously we do not want the tac (one of the anti-rejection meds) messed with. I can't imagine it going any lower, since I'm only on 0.5 mg now, but I guess it could go up. Or maybe nothing will happen and my body parts and systems will all get along!
• Nothing special planned for the five year, just the normal testing. So sometime in June I get to spend 1 1/2-2 days at Children's being a guinea pig. :) It's not so bad. I get to catch up on my reading and my children's television.

I know, I know...

I say no more, BUT the triduum hasn't started yet (technically!) so I can still blog.
I had some testing today at children's--a thyroid ultrasound and blood work. The ultrasound was fine, at least fine in the sense of 'the tech didn't see anything large and scary that warranted immediate attention' fine.
The bloodwork went easier than usual--only two sticks--but now I'm going to have matching bruises in the crooks of my arms for about a week. Beautiful.

Living at the Hospital

A touching story from today's Cincy Enquirer.

Radioactivity

So besides awesome Olympic watching last week, I got to spend two days at Riverside Hospital on the northwest side for an iodine scan.
As we recall--in October I had a thyroid biospy after a CT scan revealed a nodule on my thyroid. Prior to this, I wasn't even sure where my thyroid gland was. The biopsy was benign, so no thyroid cancer (which is fairly common for women my age, apparently), but I was sent to an endocrinologist at Riverside to investigate other thyroid issues that may be occuring. Part of that was the scheduling of an iodine scan, to see how my thryoid reacted to it. Apparently this will tell if I have an underactive or overactive thyroid, each with its own set of problems.
So, on Wednesday I went to Riverside's Nuclear Medicine Department at 7:30. Riverside is a very nice hospital, very clean and quite pretty. There are lounges scattered about with couches and tables and such, so you can read or work. There's also WiFi, but I didn't bring my laptop to take advantage.
After doing the registration paperwork at the desk (and forking over a $100 fee, wasn't expecting that), I sat down to wait. I didn't have to wait long. The tech, Lisa, came back for me and took me to the exam room. We went over my meds, and then she explained the procedure. I had to swallow two capsules, which contained a tracer so that when we took the pictures later, we'd be able to see certain things more clearly. I took those. 90 minutes later, I could eat, and 4 hours later (around 11:30), I was to come back to the exam room so we could take three sets of pictures and take some measurements.
After I swallowed the pills, I went to one of the lounges to read, write in my journal, things like that. This one had a fireplace, which was super nice.
At 9:30 (I was STARVING), I headed to the cafeteria to get a snack. It was Ash Wednesday, so fasting was involved--no meat, no snacks--but I hadn't eaten yet so I needed some sort of food. I bought a snack pack of cheese and crackers, and a USA Today. I did the crossword puzzle in an half hour and watched some of the Olympics on the television. The cafeteria was a  nice departure from the usual sterile, institutional atmosphere most places have (yes, Children's, your cafeteria counts. Sorry.).
After that, I returned to my lounge to read Signs of Life, the Scott Hahn book I'd be wanting for finish for months, and to write some more in my journal (I was so behind). I also bought a Better Homes and Gardens from the gift shop.
At 11:30 I headed back to the exam room and hopped up on the table. Lisa inserted the table into the scanner. It was sort of like a VQ scan, where the plate comes very close to the part it's scanning, so that the radiation doesn't just fly all over the room. Since it was my neck, and not my chest, I wasn't as claustrophobic as usual. I actually fell asleep during the second and third sets.
Then the tech took some measurements of my leg (no idea why, I guess some sort of baseline thing) and then my thyroid. These took two minutes each. After that, I was free to go, but not free to hang out with people. Gotta love being radioactive.
The next day I headed back around 9:30, did the two-minutes-each measurements again, and was gone. The instructions said to take two days off of work, so I did, but I wish they would've told me WHY for the second day. I guess timing had something to do with it. Oh well.
I should get the results sometime next week. We'll see what craziness my thyroid is up to (if any) then.

Clinic Update

Today I spent the morning of my day off with the kids at the Resort. It was a normal visit, nothing too special, and I had scheduled it for my day off so that if they wanted to do testing beyond the normal, they'd have time to do it.
First stop, as usual, was the infusion clinic, where, once again, the new port needle failed to work in my port. Thank God the rumor mill says the hospital will soon be switching back to the old huber needles that work. Mom has a stash at home for when we do port access, but at the hospital they do the new needles first. When the nurse asked me if it was OK to use the old ones, I gave an enthusiastic yes. My annual labs were drawn today, so that meant lots of blood for the lab to play with during the day.
After the blood letting, I went down to radiology where I had a CXR and a CT scan of my sinuses. We still keep tabs on those. Lately I've felt them draining so I figured this was excellent timing for some investigation.
Then up to clinic for full PFTs--which were stable--a visit from the new social worker, and then Julie and Dr. Kirkby. There were lots of bronchs going on today, so they were busy. I was unexciting. Dr. K said my sinus scan looked changed "but not terrible." So they are going to send it to Dr. Willet and see what he thinks. They will also set up an appointment for me to see him, since if I try to do it, I get stuck with a four month wait. It might be time for sinus draining surgery again, since I haven't had that done in 5+ years.
I left around 11:30, and headed to Katzinger's in German Village for lunch. I hadn't eaten yet today, and was hungry, so the huge Katzinger's sandwiches and French Onion soup were perfect. I had a book (Loot) that I"d bought at CMA yesterday, so I read that in the cozy deli and scoped out the artisan chocolate when I was done. It wasn't too crowded--civil servants (such as moi) had the day off, so I imagine that impacted the lunch crowd. But the roads were very clear, so that made me happy.
Dr. K said they would probably see me again in three months, which means post-birthday. I did see Dr. A and asked him if there were plans for a five year par-tay. He asked if I was paying. "Sure," I said. But I guess we'll work out the details of all the normal annual testing, etc., at my next appointment.

Thaw, and Waiting Room Confidential

Today it was....
SUNNY.
And...
Above Freezing!
And....
This will continue! 
I'm hoping that by Monday the sun will have made a slight dent in my snowbound parking lot.

*     *     *
I had an appointment today at Children's. While I was walking to the office, I thought, I have spent years of my life here. I mean, YEARS. I have charts in almost every department. I know where every hallway, ever door, every elevator, leads. I even know the evolution of certain clinics; like Psych used to be in Timken Hall, as did the CF clinic.... 
Anyway, while I was waiting, I noticed something interesting.
The waiting room was packed. This is not unusual. What was unusual was the amount of audible conversation.
If you're waiting in, say, Radiology, or any clinic, and there's a few people in the room, people talk. They sort of murmur, but it's audible. When a clinic is crowded, there's little or no talking. People watch the TV, or they whisper to each other, or corral their kids.
Not in this clinic. People were talking, audibly, about personal things, across the room. It was so strange.  It's sort of like those cell conversations in public. Don't people realize others can hear you? (Even me, of the Bionic Ear.) Save it, folks.
I had never seen this happen in a crowded waiting room. I was sort of dumbfounded.
(I know, my day was thrilling. But this was extremely strange to me.)

Seven Quick Takes Friday--Vol. XIV (medical exploits edition)

I.

So, let's talk about the insanity of my week, which kicked off with this.

II.

Medical insanity continued with oral surgery today, which basically consisted of taking tissue from my hard palette on the left side of my mouth and moving it to four teeth on my lower jaw. After all those aerosol treatments, my gums had receeded, and this needed to be done so I didn't, you know, lose teeth. Which is just not a good look for anyone. The upside of this is that my diet consists of milkshakes, soup and ice cream for the next week.

III.

I also get to emulate Dr. House, because I have vicodin for painkillers, which I seriously need. I didn't think this would hurt so much!

IV.

Book update: Re-reading my Isabel Dalhousie books, and am reading Traveling With Pomegranates, but Sue Monk Kidd and her daughter, Ann. It's a great read so far, and also has a lot of great tidbits about the writing of The Secret Lives of Bees, so if you're a fan of hers, or memoirs, or travel memoirs, go pick this up.

V.

Another big highlight of my week--The Wizard of Oz. I love, love, love this movie; it was the first movie my parents ever bought, way back in the 1980s when VHS tapes cost $80+. (Can you believe that?) I would watch it over and over, transfixed, and the only sound I would make would be at the end, where I would cry, thereby telling my mom to rewind the movie. "OVer the Rainbow" is one of my favorite songs,a nd at any family wedding my grandpa always asks the band to play it for me. (This was somewhat embarrassing in my teens but I like it now.)

So, naturally, I bought the super duper special set on Tuesday, and let me tell you--it is gorgeous. Those ruby slippers! The yellow brick road! It's amazing. Do yourself a favor and go pick it up. The set also includes a watch (!), a collector's book, original marketing materials, and, of course, the movie, in a four disk set crammed with extras. I can't wait to watch the movie with the Sing-a-long track.

VI.

In the world of voice--Robin is very pleased with my progress. She said my interpretation and expression are excellent, especially in "He Was Despised", so I was really happy. This is something I get complimented on a lot, but it's also something that I am always working on fine-tuning.

The other great thing about lessons with Robin is how much we talk about! We talk about different singers, who we like and who we don't. She gave me a great piece of advice--"find the best recording of a piece and listen to that." As in, listen to different interpretations, and then find the one you like the best. I've been doing this with "Storybook". I have three recordings of it: Linda Eder; Christine Andreas (in the original cast), and Rachel York (in the second Broadway cast). Ms. Andreas' recording is, in my opinion, the best, and it's her interpretation that I like to emulate when I sing it. We also talked about favorite singers--we both love Renee Fleming. :) Yay!

VII.

I'm at my parents' house this weekend, so it's sort of Mac heaven. I enjoy that.

Enjoy the weekend everyone!

Tales of the ER, Part II

So "ask me about my day," will ya?
The day started out normally, nay, well. I had on a good outfit, the drive in was fine, the papers were moderately full of stories. I was motivated to work and get things done.
This all came to a screeching halt around 9:00.
As I was clipping the Dayton DAily News, I started to fell...odd. Massive amounts of sudden-onset chest pain, along with shortness of breath.
Now, I had a doctor's appointment yesterday, and we thought I might have a virus. But I had never felt this way before, and I didn't think viruses did things like that.
I tried to take a few deep breaths and calm myself. Getting upset would only make whatever this was worse. So I continued cutting, continued deep breathing, drank some water.
Stabbing pain invaded my chest.
I finished Dayton, moved onto Cincinnati. Still pain. Deep breathing getting a bit difficult now.
As I was working on Cleveland, I knew this wasn't something I could just write off. I had never felt this way before, and I knew that shortness of breath + chest pain was not a recipe for good things. So I went up to my boss's office and told her I was going to the ER to get checked out.
She shooed me out the door and I drove to The Resort.

Seven Quick Takes Friday--Vol. XIII (Early Bird edition)

I.

You're probably looking at this thinking, "whoa, it's really early for her!" And you would be right.

II.

Last night I couldn't sleep. I went to bed around 9:30 and got up at 2:00 a.m., wide awake. I've decided not to fight this, so I got up and wrote a few more pages in my memoir, "A few=twenty. Go me! After writing, I still wasn't tired, so I decided to clean. Yes, you read that right. I cleaned my mirrors, dusted pictures and bookshelves, ran a load of dishes in the dishwasher, cleaned out my closet, put shoes away, and put books back in their correct bookshelf places. This took me until about 5:00, at which time I decided, "hey, let's try sleep again!" Got up about 18 minutes ago.

III.

So, my Friday is off to a roaring start, which is good, given that this week I've been fairly catatonic. Throat bugging me, nose bugging me, chest bugging me. Hopefully my body has gotten the memo to quit it. 

IV.

Looking forward to a weekend of nothing. I like weekends of nothing. Parish picnic and Faith Sharing group on Sunday, but that's not something difficult, that's something fun!

V.

Some book takes: Cookbooks this week--The Amish Cook at Home, which I am continuing to love, and Relaxed Cooking With Curtis Stone. Some of these recipes look really delish, so I can't wait to try them.

VI.

MEdical stuff: Next week is busy! Dr. A appointment on Monday, and then oral surgery on Friday to repair the gums on my lower teeth. Apparently all my aerosol treatments and stuff like that makes the plaque on my teeth really hard to remove, which has lead to gum erosion over the years. So now I"m getting this fixed. Surgery on Friday, recovery at parents' over weekend. There may or may not be blogging.  In addition to all this, there is the Saga of the Port. Apparently, Children's decided to get rid of the old system (Huber needles) and go for a new system, which removes the needle entirely once you are accessed. The only problem with this is you can't wiggle the needle around to get the access to take. With my port (it's a "floater"), you have to jiggle it. It's the only way it works.

So last Saturday a home care nurse came out to show us the new thing. We tried to access it three times. No go. My mom used the old needle after the nurse left, and we got it. The port site is now a lovely shade of bruised flesh, so I'm hoping the infusion gals can get it on Monday. If not, it could be a long day.

VII.

And finally...my friend Val is a grandma! Her daughter, Sara, gave birth to a daughter this week.

Have a great weekend, y'all!

My Family Onscreen

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

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

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

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

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

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

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

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

"The best," Sara answers.

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

Four Year Report

So, I had my own clinic on Monday (where I saw the Little Guy mentioned in the post immediately before this one), where I had the normal blood draw, CXR and and PFTs (although the main PFT machine was broken so we had to use another one. Boo.). PFTs were really great-highest they've been since November of '06. Yay! Blood work, CXR, and tests from last Thursday were also excellent. Dr. A is really pleased and doesn't want to see me again until the fall.

In the radiology waiting room, I ran into my friend Amber,the second transplant kid at Children's. She wrote a book (I'm in it too! Marginally) and we've talked a lot--before, during, and post-tx. So it was nice to see her in person and catch-up. Her anniversary is in September (Sept. 25), but she was coming down for a CT to check some things out, and to receive an infusion in the infusion clinic. Fun times.

So anyway, I am clear for the time being--the lungs like me, all is well with the world.

And yes, I have been hitting the gym pretty regularly, 3-4 times a week. Still looking for 5. Things have been so busy lately, so I am trying to dig out the apartment, keep up with school, go to the gym....whew. But busy is good.

The years roll by...

Time again for....the annual post-TX testing!

(Can you BELIEVE it's been four years?! Well, not yet. But close.)

Anyway.

We started at 8:30 in the cardiology clinic, where we did the ECHO and the EKG. The ECHO isn't hard, it's just super-uncomfortable for me. The tech has to press the transducer down pretty hard and these are sensitive areas--like, on bone. So it's not the most fun ever. The EKG takes longer to set up than it does to actually read!

After that it was ultrasound time. Fox and the Hound was on the TV, which was awesome, because I haven't seen that movie since I was about 8. I always mix up the names of the Fox and the Hound.

After that I had the bone density scan, which tells us if my bones are dense enough or if I need more calcium treatments. I take boniva right now to help with calcium absorption. So we'll see what Dr. A says about it on Monday.

After this I had a break for lunch, which was Subway in the outpatient center food court. It was recently remodeled and this was my first time down there since then. Very nice! I read The Red Tent while I ate.

Around 12:30 I headed back over to radiology for the CT scan and the VQ scan. Both of these are pretty easy. Teh CT scan just involves laying there and inhaling/exhaling appropriately. The VQ scan is a little more complicated. First you breath in a nebulizer treatment, then lay on the table for two different scans. The second one is a pain, because you have to keep your arms above your head. Ow.

Then comes the needles (only one of the day), when some sort of radioactive isotope is injected. Then you do the arms above head thing again for 14 minutes. (The VQ scan, due to the fun drugs, takes place in nuclear medicine. I always loved that name for a department.) I finished around 2, which was way ahead of schedule.

On Monday I see Dr. Astor and I'm sure he'll break all these down for me. I also get blood work, chest XR, and full PFTs. Most of this data gets sent to UNOS for their records (Yes, I have a record in Richmond. Go me!)

So that was my exciting day. Bet none of the rest of you were injected with radioactive things today!

Seven Quick Takes Friday--Vol. V

I. 

So the week got off to an auspicious beginning with time in the resort, fun drugs and a clean digestive tract (an empty one, anyway). Thankfully the rest of the week was less eventful (although the budget did get passed out of the Senate at work, so that's a wonderful thing.). Stomach is still slightly iffy, so I'm trying to be nice to it. 

II. 

Side note to the above: I like pain meds, I like what they do. I don't like needing them (who does?), and when my parents are around I tend to act like I need them less than I do. I actually have a pretty high tolerance for pain, but when it's reached, it's reached. 

So I definitely "reached" that point on Sunday morning when the ER nurses (both named Jen, although one was "Jen" and one was "Jenn") came in to access the port, start fluids, get blood draw, and give me magic drugs of phenergan and dilaudid. Oh happy day. 

Anyway, I had sort of lost it...pain was in the 10+ range, etc., and I wasn't really thinking about not asking for as much med as they would give me to feel sane. 

After Jen got the port in and the fluids running, and Jenn had the blood sent to the lab, she held up the two tiny syringes that held wonderful magic drugs (OK, I know, this sounds awful, but really, they looked fantatic at this point). She asked, " do you want to do 1 mg and see how that goes, or just do 2 right off the bat?"

"Can I have two, please?" *(Yes I said please)

It was immediate, and normally it is not immediate. Normally I look at Dad and sort of hem and haw and if mom's there she'll lobby for the lower dose. But no way.

"Absolutely." Magic was swiftly delivered. Even after the port needle had to be taken out and re-accessed with a 1" needle, I did not care. I was blissfully unaware. Or at least, pain-free, ergo I did not care what was happening to me. 

III. 

While the Pens may have lost on Sat., they've won the last two, including last night. Game 5 is tomorrow in Detroit. If we win, we can win at the Cup at Mellon in Game 6. Go team!

IV. 

Biblical studies class happening after I write this. 

V. 

We've had so much rain lately that it's nice to see sun! It was 90 on Saturday, but it will be 80 tomorrow, when I'm volunteering at BalletMet's booth at the Art Festival! Should be a lot of fun, and if you're in Columbus, come on out to the Discovery District. The Art Museum is FREE, so you can see the Egyptian Art exhibit! (That's what I'm planning to do pre-shift) After the art fest, I'm thinking about going to see my friend Bill, from Parade (he was Mr. Watson, the "rabid newspaper publisher") play Cardinal Richelieu in Actors' Theater's The Three Musketeers. One of the great things about summer in Columbus--theater at Schiller Park!

 Free!

VI. 

The gym thing goes on. I may go tonight--will go tomorrow, but will probably get enough walking, etc in at the Fest. Don't worry I'm still doing it. (Gloom and doom sigh here)

VII. 

Reading: Pride and Prejudice; The Comforts of a Muddy Saturday (finished); Handle With Care (finished); A Father Who Keeps His Promises

For more Quick Takes, see Jen at Conversion Diary!

Adventures with chicken

So, when Dr. god told me to lose weight, I didn't think she meant the "food poisoning" method. 

And yet...

Saturday was a pretty good day. I had lunch w/ my dad, went over to my parents' for dinner, and then to Gresso's downtown to watch the first game of the Stanley Cup Playoffs with my brother.

Dinner was my dad's favorite meal--chicken with some sort of white wine/cream of mushroom soup sauce. I have never, ever liked this meal. When I lived at home (well, OK, when all of us kids were kids and lived at home), mom didn't make this a lot, because we usually didn't eat it. Now that I'm gone, and Bryan and Mel are gone most of the time, Dad gets this meal more often. 

I am never, ever eating it again. 

We had dinner around 4:30. BRyan and I left for Gresso's around 7. My stomach was sort of bugging me--like I'd eaten too much, even though I hadn't--but my stomach hates me as a matter of course, so I went anyway. We ordered some food and Diet Cokes at the bar and settled in to watch the game on Gresso's big screen (in a room complete with comfy leather couches). 

As the first period progressed, my stomach felt worse--as in, extremely painful. If it had been on the left side I would have through pancreatitis or appendicitis (Yes, I still have my appendix, just not my original lungs. Go figure.). So I left the game early and headed home, took a tylenol PM and then...threw up. 

OK good. Went to bed, thinking this was over.

Oh, not so. 

After doing this about five more times, it was 6:45. I called my parents. (I had, briefly, considered calling the squad down the street from my apt. That is how awful this was) Dad came over, called Dr. Kirby ( the tx doc on call) and we went to the ER. 

Fortunately the ER was empty and people moved fast. I was a wreck--totally dehydrated (I didn't even have spit in my mouth, so talking was hard), rapid respiration, all sorts of things. Once the port was in I got dilaudid and phenergan on board, and I Was happy. No more nausea, etc. 

I was admitted to 5C, which sort of amazed me. I thought they would say, eh, you have food poisoning, here are drugs, go home, but no. More drugs through the night. I managed to keep one pill down. 

This morning had oral phenergan before my drugs--drugs stayed down. Ate real food (go jello) and was kicked out around 4:15--as usual, just in time for rush hour. Feel a lot better but sort of out of it, thanks to drugs. IV fluids are the best thing in the world. Also happy that I didn't have to do the whole, "If you want me to throw up give me zofran," which I usually have to do, because for some reason the Powers that Be do not like to give me phenergan, which is a Gift from the Gods. 

Anyway, that's how my weekend went. Hope your was better!

Home!

Home again, home again, jiggity-jig....

So I cleaned a bit, and finished Portrait of a Lady--I'd forgotten how much I like that ending. Also finished Myths, Lies and Downright Stupidity. Am now debating on reading The Last Lecture again or continuing my re-read of Breaking Dawn. Hmmmm. Decisions....

A new diet...sigh

First--happy news--I get to go home soon! Like, in a few hours! Yay!!!!

OK not happy news. Well, really not unhappy, but sort of a bummer.

apparently my cholesterol levels are high--like really high, even for me. Post-transplant, even if you're a baby, your cholesterol levels skyrocket. It's a side effect of all the drugs.

Well, mine are really high. So that necessitates a few changes:

--No more carbonated beverages. ARGH! What am I going to do without Diet Coke? I suppose I could just pretend I'm always in musicals prep, which would mean no Diet Coke anyway...and with the auditions I'm planning, that would be true.

--Also, like no caffeine in general, because that irritates GI organs. So Really my drink options now are: tea (decaf, of course, which I already drink), water, and...water. And any sort of juice I make that's low in sugar, because most drinks are just loaded with it. Seriously. Check the label sometime and you'll be amazed. Target makes a good no sugar lemonade that I like, however.

--So no fun drinks anymore. Oh well.

--The next thing--really really watching what goes ij my mouth. Very limited red meat (which I limit, anyway, since I'm not going to buy like a pound of meat for one person. It just doesn't make sense.) Chicken is good, and I can get individual portions of that. My awesome Jeni's ice cream is going to have to be severely rationed. I'd already given up most alfredo sauces, so that's good. And of course, portion sizes, which I'm good at in some cases, and not others (like, my chips and salsa...)

Like Dr. A said, it's really just a normal, healthy diet, but it's going to be hard to drop a lot of these things. Well, I thought it would be hard to drop the coke habit, too, but that went pretty easily, all things considered. And this does give me an excuse (not that I really needed one) to buy the awesome no-fat milk that's sold at the North Market! It's so, so good.

Coffee will be hard, because I seriously like it. Seriously. Sure, it will certainly save me money, but I'll have to figure out another breakfast drink now. I suppose I could go decaf? Hmmm. Will have to look into this.

If anyone has good food suggestions, please put them in the combox. I could use them!

But...I'm getting sprung! Huzzah!

Another great thing--ballet starts up again at the end of the month!

Still here....but!

OK so I'm still here, but hopefully I am getting sprung tomorrow. I'd really like to get sprung today, but we'll see what happens, since there are about 8 bazillion doctors we need to talk to in order to make that happen. But oh well.
Yesterday I had a few GI scans, and basically slept all day, which isn't a bad thing--except sleeping in hospitals sort of screws up your sense of time. You wake up and you can't remember what day it is. :)
I finished The Agony and the Ecstasy (which I was supposed to give Matt before he left for D.C., but oh well!) and will start The Man Who Was Thursday for one of my book clubs today.
The beach--still on, thank God! Also good that I pack early, unlike some people I Know. So all I really have to do is throw clothes in my suitcase because everything else is ready to go!
The dietician was in today, talking about what I eat, and I basically said I've given up eating, since between GI's new "no carbonation" mandate (which I hope and pray is short lived), the diabetes stuff, and general low-fat food looking, I'm just about ready to say ARGH! and eat all the cookies I can get my hands on. But that, apparently, isn't a good idea. So we're going to try to come up with a viable list when I come back for my normal, regularly scheduled appt. on the 25th.
Kathy also came in and we talked for awhile. Dad's not due for a fe wmore hours.
I think--hope, pray--that lunch is imminent. I really want some decent food.
At least I'm getting my caribou coffee fix--they sell the cold versions in the cafeteria!! :) :)

In Shangri-la...

Again!

Yes, friends, I'm back in CHildren's-- aka, The Resort, Shan-gri-la, whatever. Thankfully there is internet access in "The lounge", which is actually quite nice--it has games, a pin ball machine, movies, a wide-screen TV, a table and a vending machine. So not too bad. Obviously it also has a computer.

I went tot he ER on Saturday--by myself, for the first time ever, since my parents were on vacation and Tiffany was out of town, so I couldn't get ahold of her. I was having pain and cramps on my right side of the abdomen. So I had a CT scan with lovely contrast (think drinking rancid Hawaiian punch--gross), X-rays of my abdomen and lungs, a ton of blood work, etc. Then my port infiltrated, which meant the needle was disloged so fluid was going intot he skin around the port, leading to excess puffiness. So we de-accessed and tried 3 times to get a peripheral IV in, which finally happed in one of the veins on the back of my left wrist (Yeah, ouch). That lasted until about Sunday PM, then we accessed the port again because the swelling had gone down.

I'm on IV morphine and I was taking IV Zofran and Phernergan (ym fav!) so Sunday I was a bit out of it. But I was pain-free, at least. And today was pretty good, except for the massive pain bout at 6:30, which led to more IV morphine. Whether or not that will continue to be ordered, I'm not sure, but I hope so, because I hate the whole "let's try tylenol and see if it works, and if not then we'll call..." Usually I do OK, but this time I had a total meltdown--sobbing in my room. I think the nurse was convinced there was pain. :)

My parents came today once they got home from vacay. My brother was here last night, made an partment run for me to get the CI charger and a few other things, and then was back today. He has done a super job, and even channeled my dad by calling the nurses' station this morning (I hate it when they do that!). I was really impressed. He also bought me a SpongeBob Squarepants beanie baby from the gift shop. :)

Right now we're on the "evening" shift, with my nurse, Jackie, staying until 11. I really like her. :) It's mostly babies on the floor, with haert issues. I think I'm the only lung tx patient. Dr. Astor is out of town but should be back tomorrow, so I"ve been seeing Dr. Kirby, one of my favorite pulmonary fellows, and my GI doc Dr. Mousssa, who was in today.

The plan for tomorrow involves more blood tests and an Uppper GI scan. Some sort of "invasive" procedure hasn't been ruled out either; endoscopy, I think? Not sure. I'm not sure how the lungs look on the X-rays. I've been coughing more, but...

I'm also NPO, which is, as usual, killing me. I am chewing ORbit with a vengenance, and I can have liquids, but Dr. Moussa doesn't want me to have any caffeine, so that leaves me with Fuze Slenderize drinks (Which don't have a lot of sugar) and Caribou Coffee drinks so that I can get down the more powdery pills that otherwise would not go down.

Whew this is a long post--sorry! :) But hopefully things will resolve themselves. My white blood count was also up a bit. Not quite sure what that means, in context.

Oh, another thing--the CI. I've been telling everyone that they can take off their masks when they come in my room (this is kosher) so I can read their lips. And the nurses come down to my room when I hit the call button, since I can't usually hear them over the intercome.

I hope tonight is better than last night--hardly slept at all.

Oh, and, of course, Read Breaking Dawn! Very good, very long, and a satisfactory ending to the series. There were several times where I just went "WHAT?!" but it was good.

Here I'm reading The Agony and the Ecstasy and keeping a record of all the Italian words so I can expand my vocab. :)

A new meme

From Nutmeg

A is for age: 26

B is for burger of choice: The Banzai burger at Red Robin. Mmmm.

C is for car you drive: A 2002 (I think) Honda Civic EX coupe

D is for dog's name: Um, no dog.

E is for essential item you use everyday: my computer

F is for favorite TV show: Desperate Housewives

G is for favorite game: Board game--Monopoly or trivial pursuit. Sports game: Hockey, football, college basketball

H is for home state: O-H-....

I is for instruments you play: The piano. And Da Voice. :)

J is for favorite juice: Pomegranate

K is for whose butt you'd like to kick: Depends on what idiotic world-view op-ed I read... (I totally stole that from Meg)

L is for last restaurant at which you ate: Einstein's bagels w/ Dad yesterday

M is for your favorite Muppet: MIss Piggy! Duh!

N is for number of piercings: 2--one in each ear.

O is for overnight hospital stays: HA. HA. Ha. Um, do we really want to do this? OK let me do a rough count.......at least 10. Probably more like in the 10-20 range. Is that like just overnights? Or 23 hour admits? Or more than a day? Who knows? Let's just stipulate that it's a LOT.

P is for people you were with today: NO ONE, so far, because my office was EMPTY and I was annoyed!

Q: is for what you do with your quiet time: Read, blog, take a bubble bath, cook, play my piano.

R is for your biggest regret: Got none.

S is for status: Happily single. (at least the 'happy' applies at this moment)

T is for time you woke up: 6:40 a.m.

U is for what you consider unique about yourself: I'm a House candidate! (The TV show) I can sing and dance at the same time. :) ha ha.

V is for vegetable you love: Asparagus with lemon.

W is for worst habit: hmmmm.......thinking about that one.

X is for x-rays you've had: See "hospital stays" above. I'm surprised I don't glow in the dark.

Y is for yummy food you ate today: M&Ms from the Machine at work. :)

Z is for zodiac sign: Aries (fire sign!)

Mother's Day

I read a stat the other day. It said that stay at home moms would be worth approximately $117,000 if they were paid according to market demand.

I think my mom would be worth more than that.

Not just because she's my mom, but with me as her kid, you'd have to tack on a nurse's salary, too, which would put her earning power at more than $200,000, probably (beating my dad--sorry dad!).

My parents have split the Emily duties--Dad usually does the ER runs, the surgery runs, the let's go out of town and visit doctors who know nothing runs. He also Handles the Insurance Company (that's a biggie). Mom does the day to day Children's stuff, the meds, makes appointments, takes me to appointments, and does fun stuff like wash my hair, flush my port, change burn dressings, etc., etc., etc. That's a lot of work. Trust me. And we've had to be fairly inventive as the years have gone on. Washing hair with a PICC, for example, is different than washing hair with an accessed port.

Somehow in the midst of all this fun, Bryan and Mel also got raised and fed and taken to soccer, football, marching band, tennis, etc., etc., etc. I had voice lessons and dance classes and choir rehearsals. Meals got made and Christmas presents bought (Mom is, without a doubt, the Champion Christmas Shopper of the World. She is just awesome.). School projects got done, including counting pieces of litter in Blacklick Woods for a 5th grade "cluster" project. We went prom dress shopping and headed to hair appointments.

When people talk about "working mothers," they're usually leaving my mom, and all the other Stay and Home Moms, out. This irritates me. My mom certainly works, and works hard!! She's worked the equivalent of two jobs for, oh, 26 years now. That's not easy. And there's no paycheck, no reward banquets, no bonuses, not even cool lunches at fancy places with The Boss. If Mom had worked at a "real" job, then I have no idea what would've happened to me (or the rest of us). Part of successful CF and post-tx care is having a strong support system. In the weeks after tx, we were at The Resort almost every day. I couldn't drive for three months, and Dad had to work. What were we supposed to do? So mom took me and hung out in waiting rooms while I did PT and OT and all that good stuff. It takes time to learn to change dressings, access ports, and make sure all the meds are going right. I was sort of half there, what with all my drug interactions and such. Someone needed to take charge. And that was mom.

I would put up a pic of mom, but she's picky about that, so I'll just say we look alike. :) That should give you an idea.
Happy Mother's Day!