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.

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.

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!

Going on a date with Caldwell

Caldwell Luc that is. I'll be getting this surgery in a few weeks. I saw my ENT doc on Tuesday, and he wants to do the surgery before I finish this round of IV's. I should be getting the surgery date in the coming days. I am SO not looking forward to this. My previous sinus surgeries were much easier, and the recovery time was a lot less than it is with the Caldwell Luc procedure. I would be eager to hear from any of you CFers who have had this done.

Desensitization was successful! It lasted for about 5 hours yesterday, and I was discharged about 6:45 last night. We made it home safely, and Jason went into work last night for a few hours.

I am going to be catching up on my photography class today. I am enjoying it, although we are just learning the basics right now. I still haven't finished last Friday's class, and I have to do yesterday's class too. I also need to catch up in the blogging world. I have so many blogs to catch up on!

Thanks everyone for your thoughts and prayers.

Party Room!!

We arrived at Duke about 6:00 and I was in my room by 7:00. We actually got one of the "party rooms" that has a sofa, frig, table and chairs, and tons more room than the other rooms. I have been coming to Duke for 8 years now and have only gotten a party room 3 or 4 times. Anyway, it's really for those who have a lot of guests, and well... I won't be having any (other than my hubby), but it's still nice to have extra room.

As I've blogged before, I have been having night sweats for several weeks now. They have gotten so bad now, that I have to change my clothes sometimes twice in a night and have to move from bed to bed because my sheets are so wet. Because of that, and because the Cipro doesn't seem to be taking care of my sinusitis, they have brought me in for some IV antibiotics. I was supposed to come in last Thursday, but they had no beds on the floor I need to be on, so they said to wait until today. Nurses on this floor are trained to do desensitizations, because this floor (the pulmonary floor) is also a step-down unit.

The last time I had night sweats this bad was when I had a mycobacterium in my lungs. They do not think that I have any mycobacteriums in my lungs, but they are going to do a blood culture and a sinus culture to make sure there isn't one in either of those places. These sweats could be coming from the pseudomonas that they know is in my sinuses already. It's just strange that it has never given me night sweats this bad. My body has changed a lot.. in a lot of different ways.. since kidney transplant, so it's possible this is just something else that has changed.

So... Jason and I are settled in. Casey is at her dad's. It was his birthday today, so it worked out well that she got to go be with him. I talked to her earlier and she was baking her dad a carrot cake. She was whispering on the phone and she said..."Mom, what do you do if you don't have any vegetable oil and the recipe calls for that?" I told her to use olive oil, and she had no idea that one could be substituted for the other. She later called and said it turned out great. :)

Jason is on his playstation.. no, he doesn't go anywhere without it.. haha. I have been going through admission paperwork with the nurse and intern. We have good interns this time around (the nurses have confirmed). When you are in a teaching hospital, you just never know what your gonna get.

They are supposed to come in later tonight and get blood cultures and sinus cultures. Who knows how late I'll be up for that, but that's ok, as long as they can start the desensitization tomorrow. If all goes well, I should be out by Wednesday, and will be on the IV's for a month. I see the ENT next week to discuss surgery options.

Thanks everyone for your thoughts, prayers, comments, phone calls, emails, etc... They mean so much to me!

Duke appointment

I saw my transplant pulmonologist (lung transplant doc) today at Duke. It's the first time I've seen him since before my kidney transplant. My lung function studies were a little lower than they were last time, and he is thinking it's because of my sinuses. For post-lung transplant patients who have chronic pseudomonas in their sinuses, it is crucial that we keep it from draining to our lungs. Obviously, if your sinuses are draining, you can't help but get some of that gunk in your lungs, but they want us to do the best we can at keeping it from flaring up and draining. We do this several different ways... irrigating the sinuses, using sinus nebulizers, going on antibiotics when you have a flare-up, and/or having sinus surgery. I have been taking oral Cipro, an antibiotic used to treat pseudomonas for a week now. I see some difference, but my doc isn't convinced it's going to do the trick. My ENT and pulmonologist discussed me having another sinus surgery last year, but chose to get me through kidney transplant first. My doc today told me that he is thinking I'm going to need it done soon. My ENT (who I see on Feb 3) doesn't like to do sinus surgeries in the winter time. He prefers to wait until springtime when the humidity level is up. My doc today told me that if he opts to wait that long, I will probably have to go on IV antibiotics before then to take care of this flare-up. The problem with me going on IV antibiotics of course, is that I have to be desensitized to ALL IV antibiotics, since I am allergic to them all. That requires an allergist consult, a hospitalization, and of course the risk that I will have an anaphylactic reaction to it. I am going to stay on the Cipro until I see my ENT, and we will decide the next course of action then. Again, this next sinus surgery will not be an easy one. They will cut up under my upper lip and go into my sinuses that way. It's a very painful surgery.

My labs looked good today, and so did my chest xray. My doc told me that the EBV test I had done 2 weeks ago showed a low level, but not a level to be concerned about. He also said the "knot" on my arm indicated some kind of trauma/hematoma, so again, nothing to worry about.

Because of my sinuses flaring up, my pulmonologist is all in favor of me lowering my prednisone quickly. I am going to call the nephrologist tomorrow and see about lowering my dose again. He says the quicker I get to 5 mg/day, the better.

Jason is working this weekend, so Casey and I are going to have a "girl's weekend". I'm sure it will involve shopping, movies, and cooking, but not sure what else. :)

Quick Update

I started Cipro yesterday for my sinusitis. I hope it helps. I won't know for a week or so.

I haven't heard back from any of my blood work from last week. I am assuming that's a good thing??? Surely, Duke would have let me know if something was not right.

I go to see my lung transplant pulmonologist next Thursday. It's been 3 months since I've seen him. I need a chest xray and pfts.

I see my kidney transplant nephrologist on the 21st of this month. That's the day my photography class starts too. I will probably miss it, but since it's online, I can just catch up.

I see my ENT on February 3rd.

I am keeping up with my food journaling and my exercise program, but hey.. it's only January 8th, right?

A big happy 1st birthday to Gwyneth. What a miracle you are. I wore brown today to celebrate!

Sinusitis Sunday

A lot of us with CF deal with sinusitis on a daily basis. Some of us pretty much always have a headache. Actually, I'm fortunate to have had only 3 sinus surgeries in the past. I know people in their 20's who have had close to 20!!! I can't complain!

I just went on IV antibiotics in October for my sinusitis. It really helped, like it always does, but they are rearing their ugly head again. My nephrologist says that because I've been on high doses of immunosuppressants and because at the time of transplant, they gave me a medicine that completely wiped out my immune system, my sinuses are flaring up again. I couldn't get an appointment to see my ENT doc until February 3rd, so I am calling my transplant pulmonologist tomorrow to see if he can start me on Cipro, an oral antibiotic that may or may not help. The bacteria in my sinuses is very resistant to medications, so most of the time I have to go on several different antibiotics (usually at least one of these being IV) to work together to fight the infection. We'll see if the Cipro helps.. I really hope it does.

I haven't heard back from my EBV test yet. I think the results are supposed to be back by tomorrow. I'm still very tired, and that of course could be due to my sinuses too. 

We took Jason to a German restaurant last night for his birthday (which is Tuesday). It is about an hour from here, but the closest one that we know of. It was awesome! We all love German food. Tonight we are taking my mom (who's birthday is Wednesday) to dinner. Jason will be 35 and my dear mom will be 60! I can't believe it.. she was just 40... uhhh...yesterday? Where does the time go?