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!

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. :)

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.

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!!!

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!!

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!!!

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!!

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.

News!!

The pager went off!!! We just saw the surgeon. She said everything is fine, but the kidney is a little fragile. It doesn't take to movement very well. There is also a minor concern over her breathing. The surgeon wouldn't go into great detail other than they're going to hook her up to a different machine for ventilation. Once they're confident that she's breathing normally, they'll take out the breathing tube. She said it is nothing to worry about, though.  They are moving Mom to ICU in a little while and then we will be able to see her. I am so glad this is almost over with. Thank you so much for all of your support and prayers.

                                                                                                    -Casey

...And So It Begins...

FYI

Gail, Christy's mother and donor, just came out of surgery about 1:40pm EST.  Gail's kidney was successfully extracted and she is being moved to recovery.  Christy's surgery began at 12:50 pm EST.  So far so good.  More to come.

Ironically enough, Italian fare was the main selection in the cafeteria for lunch (see photo below).  I'm not kidding.  :o

Jason