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.

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!

Why...it's me!

A couple of notes: this was broadcast in 2006.

You can hear my GORGEOUS (ha) piano playing and see some of the apartment!

And, if you're really into it, a bit of the surgery. Bleh.

Karen's in it, too! As well as my parents, and my CF pulmonologist, the surgeon, and Dr. A,

who is my pulmonologist now. He's also wearing a very nice tie. :)

So go meet the crew.

There's also some footage of discharge day: I threw up TWICE while I put my make-up on

for the filming!

Quick takes

• Where have I been? I've been playing dress up. (above, Jay and I before Act II's Governor's Tea Dance scene)
• Books: Just got a new Duck's Cottage book, the Pillow Book of Sei Shonagon. After our last Duck's Cottage book club read, I decided I needed to read more about Japan! So I ordered this, as well as The Tale of Genji, from Jaime. Tale is back ordered so will be coming soon! Also, we get our March/April Duck's Cottage book this week. Very exciting reading times.
• Movies: Watched the Nureyv/Fonteyn Swan Lake. Very good, but too many close-ups of Nureyv and his slightly too bright blue eye make-up. Also got Renee Fleming in Manon at the Paris Opera. I have only watched Act I (it's long) but I just love Renee Fleming. I also love that it's in French so I don't need to totally rely on the subtitles.
  
• Listening to: Renee's Four Last Songs. Divine as usual.
• The Fan Club: Grandma and Pa are coming to see the show on Thursday with my parents and possibly my brother. On Sunday the 8th are my HAC friends!


Above: Me with two of my favorite CF nurses, who came to Opening Night!


• Health stuff: I had a visit with the CF clinic on Thursday (day of our last dress rehearsal), and everything is so great! I saw Terri and Dr. M (aka God), of course, and Dr. Kirby, who I hope is going to do more tx clinic stuff, because I really like him. The last PFT set in my file was 7/3/05. Very, very scary (and...8 days pre-transplant). The set I made on Thursday was in the 70s. Yeah, I rule like that. Not taking enzymes any more and are adjusting the doses of some meds. Man it was great to see everyone!
• This week: Really, nothing. Weird not to have rehearsal! On Thursday we have a show, and then again on Sat. and Sunday (Sunday matinee). I hope we really pack 'em in. With a good review and very positive word-of-mouth, we should!
  

A lovely night

Once again, another FANTASTIC opening.
Everything clicked. We had a great, responsive audience; beautiful music....cast camraderie. Everything was wonderful. Really.
Just had my friends over for a post-show breakdown!
Thanks to all who came tonight (we almost had a full house!) including:

• Mr and Mrs. Dulmage
• Tiff and Bill
  
• Tom and Andrea (from Indy, yay!)
• Branden
• Gary and Amanda
• Amy from J&H
  
• And Rita and Beth, my two best CF nurses!!!!
  

Wonderful, wonderful, wonderful, all the way around.
Tomorrow will be just as good, I think.
Now, to sleep!
Pics, etc. up tomorrow (possibly post-matinee).
Of course, none of this would have happened without Suzanne. I hope she was watching tonight.

GREAT!

Today was my three year clinic exam, which means the whole shebang of tests:

--Vitamin levels, in addition to regular blood draw;
--Chest X-rays;
--CT scan of chest;
--Annual bone density scan;
--VQ scan (which involves breathing and injecting radioactive material into me so they can see how that stuff is diffused in my lungs and chest--very fun);
--annual social work assessment;
--annual dietician assessment, and
--the PFTs

Good stuff all around...
I lost 5 pounds from the beginning of the month! Woohoo!
My PFTs were at 64%. I don't think I've ever blown that high post-tx and if I have, it was a long time ago, as Dr. A commented when he saw the results. So yay!
And I got to see all the lovely CF team people, including Dr. M, whom I haven't seen in quite a while. I showed them the J&H pics and generally caught up. It was great.

So it was a super-good, if very long, day. ..

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. :)

Thank you, Nurses!

Today is National Nurses day, which coincides fantastically w/ CF awareness month!
Nurses, in both CF and transplant care, are the ones on the front lines with you. They give the drugs, hold your hair when you're vomiting, go to bat with the docs on your behalf. They wash your hair, help you get dressed and set up the tub for you when you want to get clean yourself. They will also come and visit you after hours and sit with you while your lung are collapsing, trying to keep you calm while working swiftly to get you the care you need.
I love all the nurses at Childrens'! Thank you SO MUCH for all you do!
Later today (I hope)--some nursing highlight stories. :)
Off the top of my head, thanks to: Terri, Patti, Barb, Rita, Jenny, Teresa, Karen (!), Cathy, Beth, Julie, Megan, all the CF nurses and TX team nurses that I'm forgetting....thank you!!!

People

Tomorrow I get to see my transplant coordinator, Karen, for the first time in at LEAST a year.
I am so excited. :)

Congratulations!

Karen, the best t/x nurse in the WORLD, is having a baby!!!
Congratulations to her and Steve!


Karen and I, Christmas 2005, at her house in German Village (she lives in CA now, sob!)--I'm almost 5 months post-tx

Time with Todd :)

Another clinci visit today--Julie was out, so it was just Todd and I. PFTs are good--61 and 57, respectively, so we are almost back to baseline. I am still doing the aerosol treatments for like two more weeks. I have to go back next week for another follow-up, but if that's good then we can start moving the appointment dates back (woohoo!).

AND we're getting a new nurse coordinator, huzzah! Her name is Megan and that's all I know so far. But it'll be nice to have another nurse to help out Julie and Co.

Dr. A is also a Red Sox fan (he's from Boston), so I told him I would covertly root for them. Everyone else in the state is rooting for the Indians, obviously. :)

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.)

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!!!! :-

Two steps forward...

Moving back to 4AE wasn't the most fun I've ever had...the ride seemed interminable, and after roughly 14 days of being flat on my back, sitting up wasn't something I was particularly enjoying, especially with a pulse/ox machine balanced on my lap.

I think I returned to the same room I had been in before, and there was a "welcome back, Emily" sign hung on the privacy curtain that hung before the door (all of the rooms have a curtain you can pull before the door, not sure why, they just do). I wasn't there too long before we started the long process of rehab and all that good stuff.

It is absolutely amazing how your body can completely abandon you so quickly. I couldn't sit up by myself, couldn't go to the bathroom without three or four people's assistance. Course, I didn't even get to a bathroom for about two or three days, until they removed the catheter (which is a really great thing when moving is about the last thing you want to do). But it's really embarrassing to have to hit the call button and say over the darn intercom that you have to go to the bathroom. Consequently, I have no embarrassment about anyone seeing anything anymore, because there's really no point. (Don't take that literally. I mean in a medical sense only thank you.)

Rehab originally consisted of all the good stuff like standing up unassisted. I am not kidding. That's how far we had to go back. Just getting to a standing position was difficult, because I had the chest tube still in (dude, it's so not like ER where it's in for maybe 30 minutes--a few hours on the show--and then poof!), and all the IVs and the fact that my muscles had decided to take permanent vacation. So we would try to get me to sit on the edge of the bed. And then we'd try to stand. Without falling down. After that we moved to walking in place--without falling down (see a pattern?). PT also worked with me on regaining arm strength and range of motion (ROM) by playing Connect Four (I'm not kidding, again) and having me reach for checkers. That could hurt with a chest tube, and buddy, it did. So besides feeling like I was four I was crying like a four-year old because it really, really hurt to raise my arm above my head to get the stupid checker!!

All of this was compounded by the fact that my lung (right) collapsed again (in a different place, however). I was getting back from a bathroom excursion with Rita (also known as the Best Nurse Ever) and Cathy (BNE #2). I got in the bed rather ungracefully (we weren't going for style points, here, people) and felt something sort of pop. Well that's never good. I mentioned this to the nurses. It was, of course, about 8:30, so you know, no one's around, people have gone home for the night. Always a good time to get a pneumothorax! (what 'popping a lung' is technically called) The nurses called people and stayed with me for about an hour, trying to keep me calm, because I could hardly breathe as it was. It was one breath at a time, no talking at all.

Ever read the book Fish Out of Water as a kid? My mom used to read it to me. It's about this kid who buys a goldfish and overfeeds him, so pretty soon there's no place for him to swim, including the local pool. And the fish is having a hard time breathing. That's what a popped lung feels like. (Or that scene in Finding Nemo when Marlin and Dory are flapping around on the dock trying not to be eaten) In order to um, well, knock me out, I guess, I got some lovely drugs and went to sleep...how I did, no idea. Must have been a really good drug.

Someone called my parents and my dad came out, but I didn't notice him until (what seemed like, it could've been) 1 a.m., when everyone piled in my room with Dr. Hogan , the intervention specialist (did a lot of PICCs on me when I was younger, great doc) reinflated my lung with yet another chest tube!! Woohoo! And I'm a side sleeper, too, so I totally wasn't doing that. I was laying flat on my back as usual.

Therapy continued...I was put on a TPN/ lipids bag to help me gain weight. These puppies have like 7000 calories in them (or something outrageous), cost an arm and a leg, and sure don't take like chicken (or much of anything). But it could run all the time, so I was "eating" 24/7. Lots of fun, let me tell you.

In rehab I eventually progressed to sitting in a chair, which was painful. Yes, sitting upright is painful when you haven't done it. They would ask me to do it for 5 minutes, and then I'd have to nap for almost an hour or so. It was horrible. It gradually got longer. It was not a lot of fun, because we aren't talking a cushy chair or a nice rocker. We're talking about a lightly (very lightly) padded chair where you sat upright and that was it. Not fun. I mean, I'm practicing sitting here, people.

There were still, however, fun times to be had, before I could get off the floor and go home...