We're home

OK I'm home. Why am I using the royal We? I am, most definitely, not royal. Of course yesterday had to be the latest discharge on record, since we got out at 7:00 PM, but I think one of the babies on the floor was having issues, and the kid in the room next to me was definitely having issues that involved a lot of banging and quite possibly yelling. Whatever. Just glad I wasn't in that room.

Gotta love it when doctors take away psychiatric drugs and DON'T TELL YOU. I was on celexa post-tx, because I have a tendency to get waaay too worried about things I can't control and generally drive myself insane. Before the celexa I was on something else since I was about 16. So that's like almost 10 years of solid meds and then they're gone b/c they interact with the Mighty Antibiotic I'm on right now. Which I understand, but dude, tell me and give me something else! No wonder all the nurses thought all the chest pain I was having was anxiety-related. Sheesh. Here's a tip: don't just stuff a girl with adivan, give her something else, please. Thank you.

My stomach, in general, hates me. The idea that it and I have to co-exist has never really hit home with it. So I just try to do whatever it's currently telling me to do. Which isn't always a good idea. Oh well.

No work, absolutely, by order of High Command, until at least next week. Taht's OK with me. March, Spring, and Branden's 25th birthday!! Yay!!

Hopefully I'll be feeling OK by the weekend so I can maybe go to the opera. We'll see. But glad to be home.

Day 6

Still here, nothing new. EKG, blood draws, breakfast, RTs coming down to pound on me. :) No one of any importance has been here at all. Oh well.

hear ye, hear ye!

Got this from the Central Ohio CF Foundation...you people should do this if you live ihn the Columbus area. :)

Please join us in celebrating the Grand Opening!

BJ’s Restaurant & Brewhouse

1414 Polaris Parkway

Columbus, OH 43240

(Polaris Fashion Place)

You and three guests are invited to a complimentary dining experience as BJ’s puts their final touches on weeks of thorough training. All food is complimentary. Donations collected during the opening will directly benefit the Cystic Fibrosis Foundation.

Space is limited, so please choose the day and time most convenient for you and call today for a reservation.

(614) 885-1800

March 6th and 7th:

11AM - 1PM or 5:30PM - 7:30PM

March 8th, 9th and 11th

11AM - 8PM

Thank you and we look forward to seeing you!

Days 4-5: The weekend

(Ahhh! I had this written and then it got erased!)

OK, so Saturday, not so much. Actually the 'not so much' began on Friday night. I was having really awful chest pain and, since tylenol was now the only pain med on my chart, we had to call RTs and docs and get the nurses all involved, which takes forever. So eventually around midnight (this began around 9:45), I was given Adavan, which I took. It's a nice drug. :) But it doesn't relieve pain, it just knocks you out. So when I woke up Saturday, not only was I still sore, but I had slept a good 9-10 hours, so I was even more sore from having slept that way, if that makes sense. I also had Dr. W flush/drain/sample sinus tissue/fluid/stuff that morning and that was lovely. Not his fault (I love Dr. W); it's just not a very lovely procedure.

Dr. M (also know as God to early readers of this blog) was the POC (Pulmologist on call) for the weekend so she and Dr. A were powwowing to see what was going on, because I'm weird. And my body does weird things and likes to hate me.

Sunday (aka today) has been a lot better. My parents were here, which was good (they were here yesterday too and were very helpful in the "let's talk to doctors and get the real deal and get real stuff happening! department), and Sundays here are generally tombs. There's no one around unless you're like Code Blue or something. Mom helped me wash my hair, which was great because it really needed it. As we know I am Queen of the Bath Products and not being able to have them here is driving me crazy. As is not being able to bathe properly. But since I'm not on IV meds (yay!) I'm only accessed for blood draws, so as soon as I'm outta here, we are going to the bath goodies. :)

Ah, yeah, getting out of here...Dr. A said this morning that if I'm good for 24-48 hours I can go home but absolutely no work for a week. I can deal with that. I don't want to be back here any time soon, either. So Tuesday is a possible ETD. We'll see. I'll let you know. I'll be living with the parents for that period, which is helpful for me. I might break out to see The Marriage of Figaro with some kids over the weekend, but hey, it's culture! Everyone knows the Marriage of Figaro, even if they don't think they do. Trust me. :) And I've sang "Voi, Che Sapete" enough that I could hear it by a professional. The best part about Opera? Subtitles, baby, subtitles. :)


One nice thing about this admission has been the use of 4AE/5T nurses for the night shift if they're running short down here or just need extra hands. I miss those guys, because you see them, they take care of you for how long (12 years in my case) and then you don't see them after tx because you're on a different floor. That is a bummer. It's great to see them again. And Rita, known to readers of this site as the BNE (Best Nurse Ever) has sniffed out my existence and visited yesterday and today. She is a riot--I've got to get her to teach me how to quilt.

All right, Oscars on in what, 1/2 hour? Something like that. So I better find the channel. I hope Little Miss Sunshine Wins the Big Prize because I loved that movie. There are some other good ones up, too, like the Queen, but LMS was just so funny. How can you resist that?

Starting on Day 3

Whew things have been exhausting around here. Sometimes I feel like we're all running around like chickens w. our heads cut off.

I've seen lots of docs today but nothing definitive or new. Dr. A said I looked better, and I guess I'll just take that at face value, since I can never tell how I look. I guess since I'm always looking at myself that makes sense. :) I've had labs, CXR, and an RT's come in to bang on me, and now I'm getting a lovely 3 hour drug infusion that I'm not quite sure why it takes three hours to do. Actually, it appears like no one is sure why it takes three hours to do. So I don't know.

Dr. W is supposed to come tomorrow and drain my sinuses. That's good. I got through last night with only two tylenol so that is also good. I'm pretty sure I will be here all weekend, though, and who knows when I'll get back to work. Right now I don't believe anyone is talking discharge and if they are I need to talk them out of it, because when I leave here I don't want to be back in two weeks. I want to leave here with a game plan and not come back for a good long while. This is just getting really old.

Kathy was just here which is always helpful when you are in-house. My parents are also here but I sent them on a beverage quest since I'm ridiculously thirsty (it's so dry in hospitals)and am drinking things like a madwoman. You know, Cherry Coke Zero is actually very good, which shouldn't surprise me because Coke Zero is good. But I digress. At least while I'm here I can catch up on my novels, blogging, blog reading, and movies. And my parents'll buy me fun things. :)

Oh, and a product plug: LL Bean fitness fleece is the best thing ever. I brought the jacket with me and it is so light but warm, it is great. I can wear it for procedures, sleep in it, whatever. It's the perfect weight. It also doesn't wrinkle so it looks good and makes me feel human. :) They come in lots of pretty colors which you can see here.

OK that's today's commercial. :)

They change fast!!

Well I did have to get some of the fluid drained to send to the lab, but it wasn't nearly as bad as I thought. The worst part was the novocain to numb the site and even that wasn't bad. It was...interesting-looking, kind of bloody. I have no idea how it got there, but at least it's giving us a reason for my pain! I can just say,"hey,look at the sample! I'm not making it up!" :-D

Getting ready to watch the finale of the 3-part series of Grey's...dude, if they kill off Meredith, I will be tempted to kill someone! (Just kidding, but I will be upset, like many other kids, I guess)Meredith can make it! We can't leave McDreamy all alone! And how is she supposed to solve all her parental issues if she's dead ?

All right that was totally off topic. :) Oh well.

The times they are a-changin'

So to update:
--Had a talk w/ Kathy this afternoon, very good. Always is.
--Dr. A and Julie came in and talked about what to do next.My O2 sats are still pretty low (as I write this they're 94%), so he doesn't want to send me home w/ O2. I heartily agree! So it looks like I'll be here until at least Monday, because on Saturday Dr. W (my ENT) can come in and drain my sinuses, since the CT that was taken this morning showed they're a wee bit congested. That will help because nasty bugs like to incubate up there and if you don't flush them out every once in awhile they can drain down (like when you get a cold) and go into the lungs where they cause lots of problems. So we're dealing with that.
--There was supposedly fluid on the CXR, but when Mom and I went down to Ultrasound, the techs couldn't find any! So maybe no big scary needles. Huzzah! :)
--Dr. A also wants chest PT (I thought we were sooo done with this) 4x/day to help loosen up the secretions that are hanging out in my lungs. He also talked about me starting to use the Flutter Valve again. The Flutter is basically a device that looks like an overgrown playground whistle. Inside is a small cone which holds a metal ball. You blow into it and the ball sends vibrations down into your chest to loosen mucus. Now I've never really liked it because 1) I never got any results with it and 2) you really have to think when you use it, like what is the proper technique and all that. If you don't, it doesn't work. That's why I liked the Vest, because all you had to was strap in and turn in on. But I digress. I'm not sure if I will do the Flutter at home, or not. I suppose I'll find out when I'm discharged.

I am waiting on dinner (the food here really isn't bad!)and for my parents to come back from theirs (in the lovely cafeteia, oh the joy!). And two packages came for me today! One from Nordstrom and one from Crane's stationery, which has part of Branden's birthday gift. :) So at least there are some fun things going on with all this drama.

The song that never ends...

OK, or the medical drama that never ends...
Go to clinic on Tuesday (all dressed up in a new suit, looking good :-)). PFTs down again this time to 45%. DLCO down. Box is down. My inflammation score (the NiOx), however, is down, which is a good thing.
So I see Julie and Dr.A and (surprise!), we do yet another bronch. Which means I miss the second day of session. Grrrr.
So we do the bronch. Apparently there's a lot of stuff on the left side, so it was a big wash-out. I was taken up to C5, where, instead of my usual practice of just going home, decided to stay the night.
Good thing I did. I have never had such a bad night after a bronch. I couldn't keep anything down, so I was given IV phenergan (gift of the gods), and I was having intense, severe pain all along my left lung, with it concentrated around the middle of that side. Normally after a bronch I'm sore, but this was sharp, impossible-to-ignore pain. For that, we did dilaudid and percocet (not together!), with the percocet finally winning out.
I was here all day yesterday, on O2 because my sats were low, and all sorts of other monitoring gizmos. We switched to oral phenergan and percocet (They don't make you as loopy) and did some new CXRs.
Well today we found out that it's pneumonia--back again! So we dropped the amakacin, are still doing the meropenum, and don't know what else yet. I'm due to go down to Ultrasound soon because there is also fluid in my left lung. So they're going to look at it, try to determine what it is, and then "tap" it with what I'm assuming is a big, scary needle. Emily don't like big, scary needles. So we'll see how that goes.
For now I am on O2 (I think about 2 L), and I've been disconnected from the telemetry/monitoring stuff, so I just get regular vitals taken, usually at the beginning and end of every shift change.
Sleep has been somewhat elusive, the first night because of the pain and last night...well I don't have any ideas about last night. But whatever.
I'm also mad because the amakacin did a number on my hearing so now I'm even more deaf. Which just thrills me. But I ddi see Dr. W today and he's going to flush my sinuses here on Saturday,which will help the infection situation by getting rid of bad mucus and germs that like to hang around up there. He's also going to talk to Dr.A about re-scheduling my surgery ASAP.
I am so frustrated and tired of dealing with this bugabear.I certainly hope this next course of whatever dos its job, and I won't be living at Children's. I want to get back to my 'normal' life ASAP.
Will keep you posted (so long as I can guard this PC..ha ha)

Update

I have just finished my (hopefully!) last IV treatment! Woohoo!
Tomorrow I see Dr. A @ 7:30 and then Dr. H, my endocrinologist, after that. Woowee.
And we have our first session of the year at work tomorrow. Let the good times roll!
I'll let you know how it goes...

There is hope!

32 degrees tomorrow.
FORTY-TWO (!) on Tuesday!!
And my new bookshelf comes tomorrow and I'm getting a new suit.
So maybe things are getting better. :)

Winter blues

Have hit me full-force.

Yes, we're (probably) stopping the IV course on Tuesday, when I go in to see both High Command and Dr. Hardin, my endocrinologist. But one never knows. Yesterday I just felt like absolute crap, and today didn't help either. Of course, at this point, I'm sure a lot of it is psychosomatic, and, as we know, I don't readily say that. I can tell the difference.It's just so cold, and everything takes so much effort...even getting to your car, to make sure you don't fall. Then warming it up. De-icing it. Making sure you can see out the windows, etc. Now this is a pain for normal people, it is especially a pain if only half of your lungs are working. I have been good and met my (very, very modest) goal of 2 yoga sessions and 1 cardio this week, but it was a real cardio. I'm just trying to get slowly back into things. It doesn't help that in order to get to the gym I have to cross the Alaskan tundra. My aerobics videos aren't recommended right now, either, since w/ my HR being what it is, slow and steady increases, like what one gets on a treadmill, are the best best. I guess I should just keep my Pumas in my car so that when I'm at my parents I can use the machine there. At least I did something. Work is also driving me mad, and I just want this IV course to be over.

The ears are also not helping. it seems like they've gotten worse , if at all possible, and now hearing some people is almost impossible. I need to get that surgery scheduled STAT, but now they're not scheduling until April or May, so that's a bugger, because that's when we're busy at work. So I am going to have to powwow with Dr. A on Tuesday and say, "look, we MUST get this done because I am going nuts." I really am, and it is not good. Especially since I had a little "traffic incident" with Lilo and I've been on the phone with insurance people, who I don't know, whose lips I obviously cannot read and have devil of a time understanding. Fortunately I've managed to get all the vital info. without majorly screwing up anything (yet), except my stress level. With the blizzard or whatever this week I was driving a car I knew nothing about. Let me tell you how much fun that was. Anyway, I should have my car back in a week. But things are just so crazy right now all I want to do is medicate and sleep...but that's not an option.

Thank God for the long weekend, and Doughnut Sunday this week. I am going to try to get as much done as possible before the next snow hits, because I'm kind of running low on food. At least the car is gassed up and ready to go. It takes a rather surprising amount of torque to get over some of these snowbanks. My next car is so a CRV.

Any happy thoughts are greatly appreciated. David did send me roses for valentine's Day and they are beautiful on my table. They are a happy thought amidst the snow, ice and work agonistes . As is my new Simon and Garfunkle CD :)

A discovery

I like bubbles.

OK, so maybe that's not really a discovery, per se. At least not one worth posting about. But bubbles do figure into it.

One of the things that I have bemoaned about being accessed is the inability to shower/bathe properly. You have to wash your body, and then your hair, and the hair, as we know, is interesting. That usually takes up all the time (and the complaining/commentary).

But one thing I've noticed during this course is that, since I have to wash my body separately and cannot get my upper chest wet, I can use bubble bath. I have a ton of it, since I love it, and normally I never get to use it. I mean, who has time for a real bubble bath these days? On Saturday mornings I use all my scrubs and fun gels and everything, but I don't take a bubble bath since the bubbles will mess up my hair that I just spent five minutes deep-conditioning.

So the port has actually offered me the ability to use the yummy-smelling bubbles and take bubble baths. I've taken one every night and it is great. It gives me time to read, and just relax, since really all I have to do is just sit there.

Very odd what sort of blessings one will find when doing IV meds. Why did it take me so long to figure this out?

However...

I have really started working out again! On Saturday David taught me the basic Swing dance pattern and w epractice for about 30-40 minutes. Whew! I used muscles I didn't even know I had . And I have to keep practicing here or I'll forget, but it was good fun.
Today I actually...wait for it... went on the treadmill . For more than 5 minutes! Wooohoo! I didn't go very fast b/c I was monitoring my HR pretty closely, but it was still good! And I did Yoga last night. So I am really coming back with the whole working out thing, which I think will help me feel better faster. I just don't want to overdo, so I will carefully monitor the stats and everything.

Strange things, mystifying...

(points if you know what the title is quoting!)


That just about sums up today's clinic appt. It was like the battle of dueling data.
First: blood. OK
Second: CXR. OK.
Third: PFTs. Um, not so much. First the NiOx, which, as we know, measures inflammation in the lungs. I am usually around 7-10. Today I was 23! So that was odd. Then PFTs--50%. They were, um 56% last week. What's going on there? The "Box" test was fine, and the DLCO (aka "Evil Cleveland Clinic test") was up. So we had two sets of sucky data and two sets of good data. Hmmmmm.
Fourth: Amakacin level blood draw. Guy got it on the first poke. He is good. :)
Fifth: Six minute walk with Whitney one of the great PT kids. She's the one who runs the Pulmonary Rehab program. My sats were fine, but my heart rate was high.

So we talk to Dr. A. He doesn't change anything. I think it may be more inflammation and we just have to deal with that. So, with these weird numbers, I was dismissed and am coming back on Tuesday. I finish the IV course on Monday (yay!) and then...Tuesday...we'll see!! Hopefully it's all good news...

kidney allocation debate

Recently, there have been changes to the way kidneys are going to be allocated. More precisely, the way people will be listed will be changed. They are going to change it from "length of time" on the list (i.e., the longer you've been waiting, the higher up you are) to how well you'll survive after the transplant.

Now I am all about this. Right before my transplant the lung allocation system was changed to be this way. That way the "sickest" patients could be priority. I was #1 on the AB+ list.

Transplant allocation is a fine line; you have to be sick enough to need one, but healthy/strong enough to survive the actual surgery and rehab. I had to go through pulmonary rehab before my transplant so that I could survive the rigorous after effects of a major surgery. Some people aren't healthy enough or didn't take good enough care of themselves before to qualify. A host of psychological, physical and social factors go into deciding who makes a good transplant candidate, because there are so few organs to go around. With every transplant, you want to make sure that you are giving to a person who will: 1) survive the operation 2) follow the very strict regimen post transplant 3) have a support system in place to help you follow this regime 4) and make sure that you can psychologically handle all the changes that will happen post transplant. Some people can't. Some people, believe it or not, have made their entire lives about being sick. It has defined them. They can't do anything else. They didn't finish high school, didn't go to college, don't have a job. Believe me, I know people like this. Or, coversly, they decided they were going to live fast since they would "die young" and have four babies by different boys, don't take care of themselves, and are on the fast track to hospice. I also know people like this. They are not good transplant candidates because they never adjusted to living a real life with their illnesses to begin with.

Some people talk about how organs sohuld go to "children or young adults". Well, OK. Or that by changing it to sickest/most likely to survive, old people won't have a chance. The thing is, medically, someone always has an edge. No one is equal. It doesn't matter how much money you have, who you are, or what you do. Medically, someone is ahead. Someone is always a better match. And in transplant medicine, you want the best match possible for the transplant to succeed. Dr. A used to talk about finding "optimal" organs for me. This is a delicate science. By putting someone who is not medically capable of handling the surgery and its after effects, you're not only putting the recipient's life in danger, but you are also, in effect, denying someone who is a better match for the organ the chance at life. You're sort of "wasting" the organ. I know that sounds callous, but it's true. 18 people die every day waiting for an organ. We need to make sure that the best candidates are getting them. Yes I can say that because I got mine. But still, it's true.

So many people are ignorant of this aspect of transplantation. They still think it's about money, or status, or prestige. The only "status" that matters is your medical status: blood type, tissue type, height, weight, and various other factors depending on the particular organ. It's not about the money. It's about the person who is medically right for the organ.

Tomorrow...

Yet another Dr. A appointment, because it's Monday! 7:30 blood, CXR, PFTs, the whole alphabet soup shebang. Hopefully it will all go well. I will let you know how it goes! Weekend went well, had a Valentine's Day dinner with David at Scali's and it was fantastic. :)
More tomorrow...

Perfect sentiments

This post from Cathy Siepp is so indicative of a lot of my personal experience that I'm just going to post the whole thing. Comments after...

I'm afraid I had a little melt-down yesterday when I discovered that a friend had delivered not only the brisket she said she would, but also a giant pot of soup, which she'd made Maia transfer to one of my pots and put downstairs in my dad's fridge while I was lying down. So this, of course, meant a lot more work for everyone around here: Getting poor Emmanuelle to wash out the pot (which I could no longer use until it was cleaned), and divide the soup into small freezable containers, while I sat there and wondered why-why-why?

This friend is not a dolt, but one who I'd complained to many times about other people who bring stuff that won't fit in my fridge. And she was sympathetic. But I guess she figured it didn't apply to her.

Why don't they just listen?

Besides which, there's something kind of insulting about the expectation that I should eat the same giant pot of whatever all week, like dog chow, and be grateful. I guess people want the credit for cooking, if they like to cook, but they don't want to really bother cleaning or dividing or really making any effort to make it easier for the recipient.

It actually looked like pretty good soup too, otherwise I would have just asked Emmanuelle to pour the whole thing into the sink.

Now I'm trying to fend off someone who wants to drop off a giant pot of chili, "with all the fixings." I explained about the small containers, rather than a giant pot, but doubt the message will get through. If it doesn't, my new rule is anything that arrives here in a giant pot goes right back into the kindly charity-giver's car without ever entering my house.

I just can't take all the extra work and stress, which no one seems to want to hear. They think I look "great!" They can't believe I'm not really as festive and energetic as I used to be. Maybe they assume if they shove some music into the CD player here and turn what really should be a low-key visiting event into a cocktail party that will make everything fine. It doesn't.

Probably I should be firmer, but I don't want people to avoid me because I've become so horribly boring. What on earth is going on? Is all this really that difficult a concept?

Anyway, there are many people who do understand and really are so relaxing. Debbie helped me wash my hair in the sink this weekend and took Maia and I out for a little lunch at a local cafe. Emmanuelle got a flat tire on our way back from the dr yesterday but fortunately took care of it via Triple AAA without really any trouble. We arrived at Jerry's Deli for a milkshake and conveniently sat there while looking through the window for the truck to arrive at her parked car; it only took 20 minutes, thank God. Many other people are just considerately quiet and low-key and helpful, and understand when I say "no plus-ones" for these visits. And of course, the most important thing of all is just offering to help, and really being available to do so.

Me again: Oh, the part about washing the hair is so true. If you've read this blog for awhile you know how much the Washing of the Hair can turn into a Wagnerian Drama with all sorts of sturm un drang . Even with short hair, sometimes it is so just not worth it. I hate my hair very often when doing IVs and to have someone who would actually do it voluntarily, like Rita and some of the hospital nurses, were great (even if I was sooo tired I didn't want to).

And about being boring, that is true too. There is often a lot you can't do, other than sit there and have people talk to you, or watch movies. People that will just come over and talk, or bring food YOU LIKE, are great. They make you feel like you are still a person. After I was in the ICU in 2001, our church buddies got together an entire Thanksgiving dinner. It was amazing, and we never would've thought about it otherwise, because we certainly were not traveling to Pittsburgh that year and we didn't think it would be a good idea for people to come to us.

I know it can be a fine line. But, as Cathy illustrates, sometimes it is much easier to do the little things that "normal" people think are so inconsequential and easy that they don't count. They most certainly do!

"I rule!"

I sure do, kids, because I actually had a good appointment today! Yay!

I didn't know for sure how things would be, so I was happy when they were good! blood work-good. CXR--good, shows good clearing in the lower lobes where the infection was (is?). PFTs-- 56%! Up five points from last week and only about 3 points off from my all time high back in November, right before I got sick. Woohoo! DLCO was good, and the Niox (which measures inflammation) was down from about 9 something to 7.5, which is good. Dr. A and Julie also heard many fewer crackles in the bases, which means stuff isclearing. My cough is a lot better, as is the nose, and my heart rate/ sats are finally better, so I guess that means no more excuses in the exercise department.

The plan is to do the IV drugs for another two weeks, then see where we are. My next appointment is next Monday at 7:30--woohoo! Hopefully things will continue to go well and I will finally kick this bug. Even though the port drugs are driving me nuts, I am glad they are doing the trick. We also raised the CellCept to 1000 mg and moved the tac back down to 1 mg AM and PM. So more changes to remember, but it's all good.

Now I"m going to make syringes for the next three IV infusions. Oh the joy!

Yeah I've been there.

This
USA Today article is definitely something I can relate to. I have a list of drugs in a notebook I always carry, a port ID card in my wallet, and my friends know all sorts of info in case we're ever in an accident and I can't talk. Sometimes I think I'd go for the whole implanted device with my medical history...

OK I have to...

be a real geek and finish the Macbeth quote. I swear on my Catholic honor that I am not cheating.

She should've died hereafter
There would have been a time for such a word.
Tomorrow, and tomorrow, and tomorrow
Creeps in its petty pace from day to day
Until the last syllable of recorded time
And all our yesterdays have lighted fools the way to dusky death.
Out, out, brief candle!
Life's like a walking shadow
A poor player who struts and frets his hour upon the stage
And then is heard no more.
It is tale, told by an idiot,
Full of sound and fury,
Signifying nothing.

(V.II.)

Tomorrow

"And tomorrow/ and tomorrow" --Macbeth

"I love ya, tomorrow/ You're only / a day away!" --Annie

"I'll think about that tomorrow."

"After all, tomorrow is another day!" --Gone with the Wind

OK, so there are some quotes for your edification. :) But really, tomorrow, I have another appointment with Dr. A (how about "I've Grown Accustomed To Your Face / It almost makes the day begin..." ?) at 7:30. Woohoo! So I will, of course, let you know what is up.

And hopefully this quote obsession will have stopped by then. :)

You know you're abnormal...

when you're watching the Super Bowl and you're putting together saline and heparin syringes for the next three IV infusions at the same time. And the scary thing is, you really don't even have to think about what you're doing.

Pictures

Yes, OK, I have been very, very remiss on the pictures from Christmas, as of late. So here are a few, for those who care:

1. Me and my adorable 9-year old godson, Ryan
2. Some of the huge family: L-R: My Aunt Patty (Ryan's Mom, one of my mom's younger sisters); my cousin Diane; her dad, my Uncle John (my mom's oldest brother); my grandma, and me.
3. Cutest kids: my youngest cousins (they're also siblings) Brendan and Paige (who just turned 6 at the end of January).
4. Diane and her fiance (well, he wasn't then), Matt, at Smith and Wollensky's, a steakhouse near our hotel with awesome food and tremendous banana splits. Mmmm.

Dos and Dont's in a hospital

Courtesy of Cathy's World,hereis a helpful list of things to do/not to do when visiting someone in the hospital:

1. I always unplug the hospital phone as soon as I get there and use my cel phone instead, thus avoiding a ringing phone intended for the checked-out (or dead?) person in the room before you.

2. When in doubt -- that is, you are not really a close friend of the sick person -- email really is better than a phone call. I feel bad at having to turn away callers who only mean well, but I'm often trying to sleep and sometimes, when not quite awake and fumbling around, make the mistake of picking up the phone when I really shouldn't. And then I have to explain that, sorry, but I'm really not up for chatting, etc.

3. Not a suggestion, but a query: Why do visiting nurses seem so much LESS competent than hospital nurses? I'm not that only person who's noticed this, and it's disturbing, because you're really at their mercy. The nurses I ask say the visiting nurses get paid just as much, and really have to be even better since they're working not under a dr's direct supervision, so it's a mystery what the problem is. At this point, I'm having my dr's office nurses change my dressings for me, because the visiting nurse they've sent so far just doesn't inspire a lot of confidence.

I totally agree on the phone calls, especially since half the time there are people in the room and you can't talk anyway. Or you start to talk, and people come in, and you have to cut them off. If I ever cut you off in the hospital, it's because Big Important People have arrived and they have Vital Information, or some flunky from transport has come to take me away. In the second case I'd rather talk to you, but I have no choice. So don't be offended. Also, if I've just been drugged, there is no way in Hades I am answering the phone. None. Unless you're God, and even then, I won't know you're God, so...

Also, bringing magazines is good. I love my books, but magazines in a hospital are generally easier to handle. As is chocolate, or chips. But ask before you bring food because some drugs really screw up your taste buds.

Don't freak out over every little beep or hiss or whatever. Most likely the patient (AKA, me) is used to it and will hit the appropriate button to get the machine to shut up. Don't freak out going "oh my gosh ?! What is that?! Are you going to die?!" Trust me, if I was in eminent danger of death, the beeping would be a lot louder and I'd probably be several shades of blue...

Day In the Life...

From http://www2.blogger.com/img/gl.link.gifNutmeg:

My day yesterday: (Wednesday)

6:05: Alarm goes off for meropenum dosage.

6:15: Back to bed

7:25: Alarm goes off

7:35: I actually get up

8:00: Leave the house.

8:01: Realize must scrape car.

8:05: On road, where people cannot drive in light snow.

8:45: Arrive at work.

9:00: Find, much to my surprise, that clips are done!

9:30-12:45: Work on press releases, clip work, etc.

12:45: Leave for Children's

1:00: Arrive in Infusion Clinic

1:20: Change port site, give amakacin and meropenum doses

1:40: SoluMedrol arrives, start infusion

2:20: Nap time

3:15: done with infusion

3:45: Go to pick up glasses at Dr. Tracy's--new Kate Spades!

4:00: home, Bible, mail.

5:00 Time for dinner--Golden Grahams!

5:30-6:00: Some Fly Lady cleaning

6:00-6:30: run music for rehearsal

6:30: Leave for choir

6:40: arrive at church

7:10: run responsorial psalm for Sunday

7:30: Rehearsal begins

8:40: Rehersal ends--sang great stuff!

8:50: Home, bath.

9:00: More reading, cleaning, blog checking. :) Insulin, CellCept

9:30: parents over to deposit drugs

9:50: parents leave

10:00: Meropenum dosage

10:25: bedtime, read more of Masque of the Black Tulip

Steroid letdown

Well I had my last infusion yesterday, and today actually went pretty well. I did almost a full day of work, getting to the office around 8:20, doing clips, a column, and some press releases for Controlling Board items to be released on Monday. But when I got home around 4:00, I was beat. Sooo tired, I didn't even get to baby-sit, and I think I let the crock-pot meal I was making go a little long. That's the thing I hate about steroids. You feel OK and then you get hit with the side effects and you become so tired. So I'm going over to my parents' house tonight to sleep, probably won't go to work tomorrow, and I have another amakacin blood level tomorrow at 1:00, to make sure my kidneys are hanging in there. Oh the joy! The last two venipunctures have left nice brtuises, one about 1" and another about 2 1/2", on my left arm, so they are a beautiful eggplant color. Really adds a nice touch to the ivory skin tone I've got going on, you know?

Hopefully I will be OK to go by the weekend, since I want to go shopping w/ Richelle for some new things for the apartments--pillows and blankets, especially, since we are apparently heading for a deep freeze!!! Brrr!! Thank goodness I get paid tomorrow. I am so ready for spring it isn't even funny...and I am ready to kick this bug! But other than being tired I don't feel too bad. The chest pain is getting better so that's a good thing, and my nose is clearing up a little. So these are happy things. :)

More tomorrow....