Today

....my new toy is coming in....

We decided to get this which not only has Photoshop CS4 extended, but tons of other programs too. Jason has always been interested in web design, and since we could get this program for 80% off (the student version is missing a few fonts and other small things, but I was told we wouldn't miss it), we decided to go for it.

So... Jason's and my night will be spent trying to figure all of this out. My friend Amy is sending me a book and CD on Photoshop, and my friend Kelly, who is a graphic designer has given me tons of advice and has recommended this website for Photoshop tutorials. I have found a lot of tutorials out there, and it is a bit overwhelming to say the least. Baby steps....

On a health note: My sinuses are still hurting in the morning. This morning was especially bad, and I'm not sure why. I still have a lot of Tylenol 3 left, even though it doesn't help much. It does do more than just plain Tylenol though. I am also down to 5 mg of prednisone as of today. Yay!

I'll get to my Q & A tonight or tomorrow night, so feel free to keep asking. Casey is staying the night with a friend, and then tomorrow, we are going with some friends to the mall. Casey and one of her friends are also going to get make overs tomorrow. I'll be sure to take pictures. :) I've not been very good at the picture-taking lately. I keep forgetting my camera. Ughh!

Have a great weekend everyone!!

Q & A

Following along in other blogger's footsteps, I thought I'd do a Q & A. So ask me anything! You can comment or email me.

I do allow anonymous posting now for those of you not wanting to set up a google account. I hope I don't regret it. Hee Hee!

Say Whaaaaaaaat?

Check this out! That's NOT the way they removed my mom's kidney.

What healthy means to me

My blog title is "Color Me Healthy". When you read that and see that I have Cystic Fibrosis, have had two organ transplants, and the various problems that go with those two, I'm sure you automatically think "Color Me Healthy" is referring to my physical health. That's only part of it.

To me, health refers to the physical, the spiritual, and the mental. It not only means taking my medicine and complying with my doctor's orders, but it means feeling good about myself when I look in the mirror, feeling good about choices I make, and being happy and feeling at peace in life.

I have never wanted to look sick. I can only remember a few times that I didn't at least fix my hair before going into the hospital. I remember my lung transplant pulmonologist coming into the room a week or so after my lung transplant and saying... "Well, I'm glad you FINALLY look sick." LOL. I always thought if I kept the outside looking "healthy", then that would help the inside. It has in a way, because it helps my attitude and outlook on life, and we all know that attitude goes a long way.

There is another blog that I visit where a chat is taking place soon to tell others why you named your blog what you did. We are always working toward bettering ourselves, whether it be through knowledge, health, appearance, or spiritual growth. "Color Me Healthy" is me striving for all of these. Attitude and a love for life get you pretty far no matter what your challenges are!

As you have noticed, my blog posts are about health, fashion, beauty, faith, prayer, family, friendship, and just about anything else that life is about. I hope I never focus 100% on one of these things, because that would mean I am neglecting other things that matter.

Quick update

Well, my pain is finally getting better. I had a time getting more pain medication. They said they couldn't call in the one I was currently taking, so they called in Tylenol 3 for me. I'm only needing it in the mornings when I first wake up. The right side of my face is still hurting quite a bit in the morning. The left side doesn't hurt at all. The swelling has finally gone away. There is some numbness on parts of my face. I'm assuming it will take awhile to get feeling back. I really hope that my next sinus surgery, whenever that may be, will be endoscopic and through the nose, as opposed to through the gums like this one. It's been a tough week!

Because of the IV steroid they gave me at the time of surgery, I gained 7 lbs of fluid overnight. It took me over a week to get rid of it, but I finally have. I have also gone down to 7.5 mg of prednisone, and will go down to my maintenance dose of 5 mg on Friday. A lot of my side effects are gone now, but I still find myself a little less patient than I am on the lowest dose. I am definitely sleeping better though. They say your body normally produces an amount that is equivalent to 5 to 7.5mg, so if you are taking anything over that, you are going to have side effects.

Casey is homework-free tonight. She's been working on a very big math project for the past 3 weekends, and turned it in today. Jason isn't working tonight, so we are going to enjoy our family time together!

Oscar Fashion 2009

I'm curious to know what you thought about what the stars were wearing last night. Like always, I have an opinion, and I'll share it with you, but I would really like to know what all of my readers thought. If you didn't catch it on TV, you can look at the gowns here. Oh... to be able to attend the Oscars, like my friend Somer did back in 1998. I'm very envious Somer, you know that right? :)

First of all here is my pick for Best Dressed:


I absolutely love the color, the style, Natalie's hair.. well, just everything about it. I don't think she could have picked a more glamorous dress. The fact that she's so petite doesn't hurt of course, but I have seen her in some really bad dresses before. It's elegant and classy.. just like Natalie.

Here is my pick for Worst Dressed:


What in the world was Beyonce thinking? For such a gorgeous woman, she sure can be a nightmare on the red carpet sometimes. It looks like she ran out of money like poor Scarlett O'Hara and tore her draperies down to make a dress. Why would she do this?

There were a lot of red dresses, and a lot of off the shoulder dresses last night. There was also a lot of elegance and glamour. I won't post anymore pictures, but you can go to the link above to see all of these people if you don't remember their dresses.

Here are my thoughts on what others were wearing:

Angelina Jolie- simple, glamorous. I loved her hair, her understated jewelry, the lines of her dress. I do wish she would wear a bit more color sometimes though. I loved the green earrings with this. It needed no flashy diamonds.

Kate Winslett- the dress she wore was something a grandmother would wear. It was just ok to me. I think knowing she was most likely going to win last night, she should have worn something a little less matronly. The colors were blah and it didn't show off her gorgeous figure like some other gowns have. I just really don't have anything good to say about it.

Penelope Cruz- I really liked this dress. It is something you could wear to your wedding, or on the red carpet. I'm usually not fond of wearing cream on the red carpet, but she pulled it off with her skin color and hair color. It fit her nicely, and was just a classy gown overall.

Jennifer Aniston- I loved the dress, but the rest of her was just a hot mess. Her hair looked unbrushed, and what was she trying to accomplish with the braid? Since her date looks 12, maybe she was trying to look 12 too??? I'm not sure, but from the shoulders up.. I was not impressed.

Anne Hathaway- Again, the color is not something I usually favor on the red carpet, but she pulled it off. It was simple, elegant, and very flattering to her (very) small frame.

Amy Adams- First of all, I don't like her in red. This dress though wasn't as bad as some critics are making it out to be. It's not something I would choose to stroll down the red carpet in, but it's a pretty dress. I like that she chose a big, chunky necklace to accessorize with. Not many other celebs went with that look last night.

Nicole Kidman- She doesn't need to be wearing cream. I didn't like the feathers on her dress. Just not a good look for her. My personal opinion is that NO dress should have feathers on it (I'm referring to past dresses from Jessica Alba, Penelope Cruz, Venessa Williams, and many more I just can't think of right now). Nicole could have done much better.

Sarah Jessica Parker- Her hair was a mess, her face is always a mess, but I did like her dress last night. Casey didn't like it at all, but we differ on a lot of things anyway. I'm all for the "princessy" look, and Casey isn't. The color wasn't that great, but I did like the way the dress cinched at the waist. It was flattering to her figure I thought. It was "old Hollywood", and I thought she pulled it off. If only she could have done something different with her hair.

Jessica Biel- She has already gotten a lot of criticism for wearing this. I don't like the color that much, but I did like the design. I disagree with a lot of the critics on this. It's not my favorite look, but it was elegant. Her hair needed to be up, but then again, I think from the neck up, she's usually a mess anyway.

Halle Berry- She's gorgeous in anything she wears, but this wouldn't have been my first pick for her. Black and gold aren't my favorite colors in a dress. This dress kind of reminds me of Christmas wrap. The lines are just ok. She could have worn something more flattering to her gorgeous figure.

Heidi Klum- Two words.... Hot Mess! I have nothing else to say.

Freida Pinto- perfect color for her skin, beautiful, elegant dress. I don't think she could have picked a more perfect dress. I love the design, the way it fit her.. well, just everything about it.

Taraji P. Henson- Here we go again with the cream dresses. If this dress would have been in a different color, I would have loved it. It had just enough detail, without going overboard. It fit her nicely.

Marisa Tomei- Even though this dress was cream, I really loved it. She has been looking terrible on the red carpet lately, but last night she was stunning. The detail of the dress was different than any other dress last night. The "folds" on her dress really accentuates her gorgeous figure. I would probably say this was my second favorite dress of the night.

Miley Cyrus- Well, Jason, Casey and I disagree on this one. They think she looked like a fish with scales, and I actually liked the dress. I like the two-toned look and belted look. She wears a ball gown well!

Alicia Keys- WOW.. just stunning all around. No embellishments, but none were needed really. The color suits her well. I really liked the lines of the dress. Nothing bad I can say about it.

Evan Rachel Wood- This was not a good color for her. I really don't like the top of the dress at all. She just didn't pull this off. If it were on someone with a darker skin tone, maybe I would like it, but not with her pale skin. And her hair color is always terribly "CVS bottle" looking.

Vanessa Hudgens- Even though some sites are saying she was the best dressed, I disagree. I think she looks like a mermaid, and the flowers on the front of the dress are just too much. Her hair and makeup were perfect though.

Tina Fey- There is nothing about this dress that I like. She needed some color, and the style of the dress is not flattering to anyone.

Reese Witherspoon- Although she is my favorite actress, I was so disappointed in what she wore last night. I don't think it flattered her small frame at all, and it just looked "thrown together" to me. I did like her simple hairstyle though.

I would love to hear your opinions!! Who do you think was best dressed? Worst dressed? Did you enjoy the Oscars last night? It has become so predictable, but I did have fun watching Hugh Jackman host. What a cutie he is!!

Lori

Thank you to everyone who is praying for my friend Lori. For those of you who haven't read my previous posts about her, she is a 28 year old CFer, who had a lung transplant 9 years ago. She and I met a few months before my lung transplant at Duke.

Lori was diagnosed with chronic rejection last year. Despite being treated for it, her lung function continued to fall and fell pretty quickly from about November until January. They finally did a bronchoscopy (biopsy of the lungs) last week and found out that she has aspergillus pneumonia. Aspergillus is a fungus that a lot of CFers get. Getting it after a lung transplant though, proves to be harder to treat, because of our weakened immune system. When it actually turns into a pneumonia, it is very serious.

Lori started on an IV anti-fungal, but it doesn't seem to be helping yet. They did another bronchoscopy today. They will not find out the results of that bronch until Monday. I just received a text from her husband Jason saying that the bronch is over with and Lori is sleeping.

Please pray that whatever they find in the bronch, they will be able to treat. Pray that the anti-fungal will start working and she will be feeling a lot better soon. Also pray that her lung function comes back up to her normal range.

Lori is such an awesome girl. She loves life and embraces it! I cannot say enough good things about her. Her sister Shannon also has CF and had a lung transplant several months after me. Their parents both donated lobes to Lori. That family has been through a lot. Thanks so much for the prayers!

Living-related lobar transplant

In case you don't know what happens in this type of lung transplant, I'll explain it here, or you can go here for diagrams and a more medical explanation.

Everyone has 3 parts or lobes to their right lung and 2 lobes on the left. When a person receives a lobar transplant, both of their lungs are removed and replaced with lobes from 2 different donors. In my case, it was my mom and my uncle. They removed both of my lungs, and replaced them with my uncle's right lower lobe, and my mom's left lower lobe. Now, my uncle has only 2 lobes on his right side, and my mom has only 1 lobe on her left.

The surgeons turned the lobes sideways in order for them to fit into my chest cavity. So, I have only 2 lobes.. one on the right side and one on the left side. At first, they looked small on the chest xray, but it didn't take them long to expand (think of blowing up a balloon) and fill the space where my old lungs were. They don't grow, like a liver does, they just expand.

Because I received only lobes, I will never have a lung capacity like someone who received full lungs does, but I have 100% (or close to it) oxygen saturation.

The reason I had to receive lobes from a relative is because I developed anti-human antibodies when I was pregnant with Casey. Everyone has a small amount of these antibodies in their blood, but I had so many that it made me incompatible with 96% of the general population. Finding that 4% would have taken a long time, and at the time, I didn't have that long to live, so they started testing family members and friends too (just in case they might be a match), to see if I was compatible with them. My mom's brother Joel was a match, and my sister Renee was a match. After doing some testing on my sister, they found out she had mild asthma and couldn't be a donor. They didn't test my mom right away because she is 3" shorter than me. They prefer your donor to be at least the same height so that their lobe will be of adequate size. When I got so sick that they knew it wouldn't be long before I died, they decided to go ahead and test my mom. She was not only a match, but her lungs were large for her size (just like her kidney, which is huge.. haha).

My friends Lori and Katey both had lobar transplants too. If you would like to read my lung transplant story (I'll warn you, it's very long), you can go here.

If you are overwhelmed.....

If you are like me, you get overwhelmed sometimes trying to keep up with everyone in the blog community. I find myself during times of prayer, praying for the wrong child, or saying the wrong name, etc. At least God knows who I'm supposed to be praying for. Whew.. it gets overwhelming sometimes. I don't think as clearly as I used to, and I blame a lot of it on the transplant medications. They affect memory, and I just don't feel as sharp. So, to all of my fellow bloggers, if I ever call you the wrong name, or call your child the wrong name, please forgive me. I do mean well.

Now, for all of my new readers, and for those who are overwhelmed like me, I am going to "catch you up". Here is a quick "about me":

My name is Christy.. as if you didn't know.

I was diagnosed with Cystic Fibrosis at 4 years old.

I am an RN, but retired in 1998 because of my health. I do keep up my license though.

I had a living related lobar transplant in 2001 at Duke University Medical Center. In other words, they removed both of my lungs and replaced them with a lobe from my mom and a lobe from my uncle. They are both doing great!

I do not have CF in my new lungs (and never will), but still have CF in the rest of my body.

I have diabetes, fibromyalgia, osteoporosis, gallstones, irritable bowel syndrome, and chronic sinusitis.

I had the nissen fundoplication surgery (stomach wrap) to treat reflux 3 weeks after my lung transplant.

I started having kidney problems about 4 years after my lung transplant. This was caused by the anti-rejection meds, diabetes, and high blood pressure (due to the meds).

I had a kidney transplant donated by my mom this past November. She is doing great!

My kidney is functioning beautifully.

I started showing signs of chronic rejection of my lungs almost 2 years ago. They started me on some new medications that seem to have helped that. 

My lung function averages around 75%. Some post-transplanters can get above 100% after receiving new lungs, but I only got lobes, so I'll never get that high. 

I have had 4 sinus surgeries, the most recent being a week ago.

I still have a port-a-cath, because I have to receive IV antibiotics for my chronic sinusitis once or twice a year.

I average about 42 pills a day (yes, they are all legal).. give or take a few depending on my condition(s).

My husband's name is Jason.

We just celebrated our 3rd anniversary on Valentine's Day. You can read about how we met here.

I have a 13 year old daughter named Casey. You can read more about her here.

She does not have CF, but she does have asthma and allergies.

My parents and sister live very close to me. They moved here to be with me before my lung transplant, because I was so sick. They loved it and stayed. :)


I encourage all of my fellow bloggers to do a quick "about me" (ok, maybe mine wasn't so quick). That way, for those of us who are overwhelmed, we can quickly catch up. :)

Happy Anniversary to me

Here is my anniversary present from my sweet hubby. It will be here in a couple of days!!! I can't wait.

It's regularly $999 and because my mother-in-law works at the local community college, she got it for 80% off!! I can't believe it. I'm so excited.

I'll be taking my second photography class in March, and I'm also signing up for the Photoshop class (both of these are online classes). Someday I hope to be able to make money retouching photos. I have SO much to learn first though.

Thank you sweet hubby.

Angelina Jolie and me

She's famous. I'm not.

She's in love with Brad Pitt. I'm not.

She rents gazillion dollar castles. I don't.

She was born with big, luscious lips. I wasn't.

She has long thick hair. I don't.

She is a world traveler. I'm not.

She can act (ok that one might be debatable). I can't.

She gets mobbed by photographers. I don't.


She has brains, beauty, and wealth. She has inspired me to do another poll (I just love 'em). Have fun with this one readers. It will be fun to see which combination people pick. Think about it before you answer, and be honest.

Survey SAYS....

The results are in Casey, the people have spoken (see poll results below):

I am da'MAN!!!

In yo face BOOYAH!

Love and kisses

Jason

...and many thanks to all the warm, heart-felt love from those that voted. I couldn't have done it without you. :)



Jason is weird.
4 (20%)

No, Jason is not weird, but I wonder what makes him tick.
2 (10%)

Jason is da'MAN!
13 (65%)

Jason isn't like the rest of us.
4 (20%)

Why I almost ate a whole pound of M&M's

When I was younger, probably 10 or so, I was told that sitting down with a carton of ice cream and eating the WHOLE thing will cure depression. I tried it once.. it does help.

I knew it would come. I was expecting it. I was prepared for it. But that doesn't mean I have to like it. I'm having some post-transplant depression. Not the "I can't go on living", "my life has no meaning", "I'm so miserable I can't get out of bed" depression. I just have the flat affect, blah depression. It happened after my lung transplant too. As a nurse in the post cardiac surgery unit years ago, I would talk to my patients about the possibility of depression after they got home and were feeling better. Everyone always wondered why the depression came AFTER they were better instead of before. I'm still not sure of the reasons, but it's a reality for a lot of folks.

I know I'll get better. I am not hopeless by any means, and I don't think I need an anti-depressant to get through this. It's just going to take some time to get back to feeling like myself again. I have everything in the world to be thankful for. I do know that, and that makes me feel a little guilty for having these feelings.

So.... that's why I almost ate a whole pound of M&M's, and took a whole lot of insulin to go with it. :)

Recovery

I know I have severely neglected my blog! This has been one tough recovery from sinus surgery. They gave me an IV prednisone burst during surgery, and I think I was riding high on that for awhile. When that wore off, that's when things got worse. I also gained 7 lbs of fluid in 24 hours because of it. I'm slowly losing it, but it's taking time.

Yesterday was my worst day as far as pain and swelling. I could actually see my cheeks when I looked down. I now know what boxers feel like when they get punched in the face. I have been using my pain pills very sparingly since they didn't give me many.

I got out of the house for the first time today since I got home. It's sad when the most exciting part of your week involved Target and Rita's. LOL.

I have been invited by someone to be a guest blogger on their blog. They run a medical blog and have guest bloggers on there to to tell their stories and answer questions. I would have to do one post per day for a week, and I would be available to answer questions. How cool is that? I need to gather my thoughts and think about what I would say. I don't write well under pressure, but I do love telling my story.

Here are some random pics of Casey today. Yes, she still eats with her hands. LOL






I will try to get back to regular posting now. I've missed it.

Happy Anniversary Luv

Happy Anniversary to my wonderful husband, Happy Anniversary to my awesome parents, and Happy Valentine's to all of you in blog world.

It's been 3 years since I married my soul mate, and although we've had a lot going on in those 3 years, they have been wonderful. I am so blessed!!

To do's and To don'ts

To do:

Catch up on my photography class. I'm really behind.

Catch up on emails and blogs.

Do something really special with Jason and Casey tomorrow for ♥ day!

Irrigate even though it's painful.

Get in a better mood. Maybe it's lack of sleep, but I've been horribly moody today.

Wash my hair. Yes, I have to put this in a to do list. Gross, huh?

Do some online shopping. I have to give in and go up a size in clothes.


To don't:

Pick at my stitches with my tongue.

Blow my nose anymore, because it comes out the incisions in my mouth.

Drink anymore coffee today. I'm going to pay for it if I do.

Waste too much time on Twitter. It really is addicting.

Eat anymore chocolate for awhile.

Bite my fingernails. I have GOT to stop this nasty habit.

Pain, swelling and such

We got home last night around 10:30. I was feeling so good yesterday, but this morning, I feel like my face has been run over by a mack truck... ok not that bad, but the trauma is definitely catching up to me.

My cheeks are very swollen today, and my head is throbbing. They only gave me 25 pain pills to come home with, so I'm using them VERY sparingly. There was blood all over my pretty cream colored sheets this morning. And if that wasn't enough, I've gained 7 pounds of fluid since Tuesday. I'm assuming this is normal after surgery. I do hope my kidney function gets better and I start getting rid of this fluid soon. It's weird how I always seem to be feeling good immediately after surgery and then bam.. it hits me a day or two later. Maybe all the good stuff they gave me during surgery just wears off.

I'm going to be resting today and trying not to move my mouth too much. (lucky for Jason.. haha) I think yesterday I was thinking that this sinus surgery was actually EASIER than my previous ones, but I definitely don't think so now. I'm sure the swelling and pain will start to lessen soon though. Patience, patience, patience.

Going home!

Discharge papers being filled out as we speak.. YAY!!!

Cali Roll

Jason just went to the cafeteria and got me a Cali Roll... yummmmmmmm!! I'm going to devour it.




My ultrasound results are in... my kidney is normal. There is some fluid in the abdomen, but they aren't sure where it's coming from. Last I heard, I might still be going home tonight. Who knows at this point.

No news yet

Well, apparently Duke is on divert status now and are actually turning people away from the ER and everywhere else. They are way over capacity. And apparently, this is one reason for the delay in reading my ultrasound. Normally, they would have the ultrasound read by now, but who knows when that's going to happen now. My assumption is that I'm going home tomorrow instead of today... that is if everything is normal on the ultrasound.

My pain is being managed pretty well. It's the stitches that are feeling "raw" and the majority of my pain is coming from that. Drinking and eating really irritates it. The bone pain is better today. I was told that your face would feel numb by the next day, and I'm assuming that's what's happened.

Jason and I just made a trip down to the cafeteria. At least gelatin doesn't seem to hurt my gums too much. I was craving a Cali roll, but didn't know how that would sit on my stomach. Maybe later. :)

I'll leave you with a pic of my sweet hubby. I'll update more as I know more.



Jason says peace through superior fire power!!

Lori

Please keep my dear friend Lori in your thoughts and prayers today. She's getting a bronchoscopy today to try and figure out why her lung function has dropped from the mid 70's to the mid 50's. She's 9 years post-lung transplant and had a living related lobar transplant like I did. She was the 2nd surgery done like that at Duke.. I was the 4th. She received lobes from her mom and dad! She's done so well with her lungs, with the exception of some bouts of acute rejection and some acute infections. I'm really worried about her, and just hoping and praying that whatever they find today will give them some much needed answers and can be treated. They have already discussed the possibility of her having to have a second lung transplant if this is caused by chronic rejection. She lives in Massachusetts now, but would be coming back to Duke if she needed another transplant. We just hope it doesn't come to that anytime soon!

Her hubby (who is also named Jason) is blogging about her bronch today. Go check it out. Oh, by the way, that pic is of Lori and me on one of my visits to see her. :)

Speaking of bronchoscopies, Shawn, another transplant friend is getting bronched today as well. He received his new lungs this past Thanksgiving and has already had an episode of acute rejection. They are hoping that it's gone now, and will know after this biopsy. He has also had a dry cough and they are unsure of the reason. The bronch should give them answers. His wifey poo Tina is such an awesome lady. She and I have so much in common.. both RNs and both have 13 year old daughters. :) Shawn is definitely blessed to have her in his life. Please keep him in your thoughts and prayers also.

Nap time

Well, I just got back from ultrasound. My kidney function numbers are a little off today and I'm having some swelling around my new kidney, so they wanted to ultrasound me and make sure everything looks good. They want to rule out a lymphocele around the kidney. If the ultrasound looks abnormal then I'll have to have a consult with the kidney docs before being discharged. If it's normal, I may get to go home today.

The pain is much better today! I'm only needing oral pain meds every 6 or so hours. I keep thinking I have food stuck up under my lip, but it's just my stitches. They feel very weird to me. The ENT docs and lung docs have seen me today and both agree that things look good in those areas.

I'm thinking it's nap time since I didn't get but about 2 1/2 hours of sleep last night. Hopefully when I wake up, the ultrasound results will be back.

Thanks so much again for your thoughts and prayers. You guys are absolute best!!!

Randomness at 4:55 am

I have nothing better to do with my insomniac self in the middle of the night at Duke. I'm trying to be quiet, so that I don't wake Jason. I did manage to sneak some M&M's. Nothing more randomly fun than eating chocolate, eh?

They gave me a big 'ole boost of IV steroids yesterday during surgery. The anesthesiologist said that normal people produce extra steroids in their body as a response to stress during surgery, and that because I'm a chronic steroid user, my body would most likely not respond like it's supposed to... SO they gave me some help. I am going to assume that's why I'm wide awake now. And the fact that pain meds give me energy instead of making me sleepy like they do some people.

Here is my sweet husband snoozing. You can see the lights across the street at the VA hospital and my computer in the reflection. We forgot our camera, so all we are getting are photo booth photos with the Mac.



My pain is better managed now. I got a really good resident in here to see me last night. He stayed and chatted with J and me for a good while. Such a nice guy!!!

I'll let you know later if they are discharging me today. Keep your fingers crossed!! :)

It's meeeeee

Can you seriously believe I'm posting this pic? LOL. I probably won't remember any of this tomorrow and wonder what the heck I was thinking. 

I'm in my room and trying to not go off on the intern here on the floor. They have taken all of my good pain meds away... of course. I was getting some good stuff before I came up here. Jason is going to have to be my advocate when he gets back from the cafeteria. 

I'm having a lot of bleeding from my nose, but I'm guessing that's normal. The surgeon said that the infection is actually starting to "eat away" at the bone a little bit, but he thinks that this surgery, plus irrigation 3 or 4 times daily will slow that down. It's not actually "in" the bone yet, so that's good, but I've got to keep it that way. They made additional holes from my maxillary sinuses to my other sinuses to assist in drainage. And they actually had to pull the skin of my cheeks away from the bone, so my nerves will be affected for a couple of weeks. It should get better though.

I talked with Casey tonight. I miss her so much. If things go well, I might get to go home tomorrow! I hope so. Other than the pain not being managed that well at the moment and the blood draining down my throat, things are really not so bad... not as bad as I thought. I didn't expect to be blogging tonight.. that's for sure. :)

Thanks everyone for your thoughts and prayers and comments and emails, etc. 

Progress

They're moving Christy out of recovery and onto the 7800 floor.  I'm heading there now.

Now we REALLY wait

Christy is out of surgery.  Everything's cool.  Just had the consult with the scalpel jockey.  Darn it, forgot to get his picture!  Anyway, her maxillary sinuses have been thoroughly scraped and reshaped.  The doc said that she's probably going to feel like she's had all her teeth pulled.  Yowzers!

Anyway, now we REALLY wait.  3-4 hours of recovery and then they MIGHT have decided on which floor to put her.  More to follow.

Jason

Well it's about TIME!!!

I'm so glad that we got here on time, all red-eyed and bushy-tailed; for our surgery that was scheduled at 11:15 am. Surgery began at 4:09 pm. Meanwhile, I had me some grub. Welll, if I were an aborigine I'd be eating grubs. But then if I were an aborigine, I'd be in Australia and the sight of the hospital would bewilder and frighten me.  If I were in Australia,  I would be in a warm and sunny place in the middle of summer now.  Which is different from here.......where it's sunny.....and 71.....and the middle of ...winter?  Anyhoo, I was eating fish. Sushi. At Duke. Pretty good, too. See?

Mmmmm, it looks so delicious.  Don't you want some? You know you want some.  Mmmmmm, sushi.

Anyways, now we wait about 2 hours.

What do I do for 2 hours?  Alone?

Jason

To Occupy Your Time

The whereabouts of Charlie the Unicorn is still under investigation. But since you're all on pins and needles, I provide you with The Impossible Quiz.

Casey found this. You have her to thank, or curse, depending on how hard this quiz sucks you in. And YES, there is an answer, or method, or procedure, for EVERY question. Every question has an answer. They all have a rhyme or a reason. Enjoy!!!

After MANY attempts, I've made it to question 45. I'll be trying again later.

...and we're still waiting to get called back to the O.R.

Jason

...need cheeseburger IV, STAT!!!

It's noon, and we've got the oh-so-necessary-if-you-don't-have-one-you'll-die-on-the-operating-table-pre-op screening out of the way. And guess what? Christy is STILL having her surgery. She fooled 'em good.

So we're waiting to be called back to the dressing room so Christy can get her new threads. She's starving and there's no food in sight.....which is probably a good thing since that would mess her surgery thing up.

We'll post more later...

Jason

Pre-surgery checklist

1.) Port de-accessed and re-accessed. Check

2.) Packed. Check

3.) Shaved. Check

4.) Instructions given to Jason on keeping my blog updated.   Check

5.) Sleep medicine taken. Check

6.) Daughter and dog in good hands. Check :)

7.) Eaten everything in site since I'm NPO until surgery tomorrow. Check

8.) Getting a good night's sleep. Soon to be check I hope!!

Night all. I'll probably update at Duke before my surgery, and Jason will update afterwards. Pre-op is at 8:45, and I have to be at surgery check-in at 11:15. I would say surgery will be around 1:00 or so. Thanks so much for all your thoughts and prayers!!

IBO school???

My daughter has applied to an IBO school for next year in the Middle Years Programme. I'm just curious if any of you have any experience with these schools. I know that they will offer her more of a challenge, and better prepare her for college than the traditional public school. I'd like to hear your opinions. By the way, she'll be getting her SAT scores at the end of this week. I'm curious to know what she makes on them as a 7th grader.

My positive post

Positive things in my life (inspired by Lori's positive thinking post)...

1.) Sinus surgery will help with the infection of my sinuses and I'll be feeling much better soon!

2.) My mom loves me and would never criticize me like this mom.

3.) My daughter is smart, motivated, and has goals beyond tomorrow's middle school drama.

4.) My prednisone dose will be reduced to my maintenance dose of 5 mg in 2 1/2 weeks.

5.) I have tons of friends and family praying for me. :)

6.) My hubby loves me no matter what my faults are (and I have many).

7.) I can be a stay at home mom.

8.) I live in America.

9.) Even though tons of my CF friends have passed on, I had the great opportunity to know them first.

10.) God loves me!

And Lori, even though my post doesn't contain a cruise to Bermuda (yet), I have hopes that one day soon it will. :)

Countdown to surgery... 2 days

Duke called me on Friday to let me know my surgery will be this Wednesday. Thankfully, I won't have to go earlier than Wednesday to do my pre-op. They are letting me do it that morning.

I'll be getting the Caldwell Luc procedure done (don't click on that link if you have a weak stomach). My 3 previous sinus surgeries were done endoscopically, which was much less invasive. They will actually be drilling through bone this time to help assist in the draining of my sinuses. Of course, this will not be a permanent fix for my sinus problems.. no surgery ever is for those with Cystic Fibrosis. The chronic infections we have are just that.. chronic, so the infection can be managed, but not eradicated. This surgery though, is supposed to assist in better irrigation of the sinuses as opposed the previous surgeries I've had.

I think side effects from the surgery include pain (of course, LOL), numbness of the gums for several weeks, facial swelling, and bruising. There are other more serious side effects that I choose to ignore. :) My surgeon is excellent, and I trust him very much. I couldn't be in better hands!!

I am hoping to be discharged on Friday, with a follow-up to the ENT doc next week. Please keep me in your thoughts and prayers.

If I don't post it, does it mean it isn't so?

Jenn passed away yesterday morning. I have not wanted to post this all day. I kept hoping the posts about her were wrong and someone would come back and say she's still with us, she's still fighting. It seems that so many people are losing their battle with this disease lately. I'm so sad that Jenn didn't get that second chance at life with a new set of lungs. My heart goes out to her fiance Andy and her family. Keep them all in your thoughts and prayers.

Update and prayers

I'm sorry I haven't updated on Jenn, but I haven't heard any news at all. I keep checking my CF forums for updates, but so far there are none. I am praying that no news is good news! I will update as soon as I hear/read something.

I've been having some edema (swelling) that I normally don't have, so I am headed out to get blood work to make sure my kidney function is stable. I still haven't heard back from the ENT on a surgery date, so I guess I'll be calling them again in the next day or 2 to see if it's scheduled.

Casey was out of school yesterday because of the tiny amount of snow we had. By 9:00, it was mostly melted.. LOL, but it was really nice having her home all day.

I'm almost caught up on my photography class. I have a few small assignments to do today, and I should be caught up. I have learned a little, and hope to learn a lot more in the next class that I'm taking in March.

Please keep my dear friend (and living-related lobar sister) Lori in your prayers. She was the first transplant recipient I ever met. She had the 2nd living-related lobar transplant at Duke, and I had the 4th. What a great friend she's been to me. It has been almost 9 years since her transplant and she is experiencing some chronic rejection. She also has something else going on with her lungs that the docs can't put their finger on. She'll be getting a bronchoscopy (biopsy of the lobes) in about 2 weeks to hopefully get a diagnosis. Please pray that her numbers come back up and that she's feeling back to normal soon.

Prayers please!!!

I am asking all of my blog readers to please keep Jenn in your prayers. She has CF and is currently in the ICU hooked up to a ventilator. She had a major bleed in her lungs a few days ago, and isn't doing well at all. Please pray for her, her fiance Andy, and the rest of her family.

This is very shocking news. Jenn just posted on her blog last Thursday. Live today like it's your last, because you just never know. How sad I am tonight after hearing about this.

Big time error on Duke's part

So, I called today to see when my sinus surgery is scheduled, since I haven't heard anything from them. The lady at my ENT's office paused after I told her my name and why I was calling. She said "Oh no, I have you down for the surgery today!!!" I was like "WHAT???" She said, "yeah, we thought you were still in the hospital and have you scheduled for surgery today." I actually remained very calm!!! :) After working this little "error" out, she said she'd call me with the surgery date soon. I made sure to remind her that I need it before I go off of these IV's, so that I will be covered with antibiotics at the time of transplant, and that I didn't want to have to go through desensitization again. She said she got it, and will get in touch with me about a date.

It was a lazy weekend. I have had bad GI problems on these IV's. It's been a long time since I've been on a cephalosporin, and I forgot what they did to me. I've lost some weight, but actually ate pretty good today, so I'm sure I'll gain it back.

Casey took me makeup shopping today. She's trying to transform me. I hate to tell her this, but you can't do much to get that youthful look back shy of plastic surgery. We did wind up getting some really good things though. Let's see if they work now. haha!

Hope all is well with everyone in the blogging world!