Bronchoscopy number 486

...Ok, not really, but sometimes it feels like it. I have had many of them since my lung transplant over 8 years ago, but not quite that many (I don't think).

I went to Duke yesterday for another bronchoscopy (biopsy of lungs) and a visit with my lung transplant pulmonologist. I had some acute rejection back in October and did some IV steroids and a prednisone taper for it. I went for a follow-up bronch in November, and everything came back clear. No rejection or infection. This was to be my last follow-up bronch due to the rejection, and then I would just go back to my yearly bronch like normal.

Before my bronch yesterday, I had blood work, pulmonary function tests (pfts), and an xray done. My pulmonary function tests were down quite a bit since my last visit. My total lung capacity was only down about 4%, but the number that indicates how your smaller airways are working was down 17%. I had my bronch, and just like last time, had an allergic reaction to something. I believe they have switched the medication that numbs the back of your throat, because the meds they use to sedate me are still the same. Anyway, on top of the sedating medications, I had to get 50 ml of IV benadryl. The rest of the day is a little blurry, because of all of that.

After the bronch, I saw my pulmonologist, and he explains to me that my blood work shows that I have bone marrow suppression. This means that my blood cell counts are really low... both red and white. I'm even more anemic than I was at my nephrology appointment last week, and my white cells are down even lower too. My pulmonologist believes that the combination of two of my medications are doing this, so he has discontinued one of them. It is the medicine that prevents me from getting CMV or cytomegalovirus. Because I was CMV negative at the time of my lung transplant and my mom was CMV positive (in other words, she had the virus sometime in her life, and I hadn't), it put me at risk of developing the virus. For someone healthy, this doesn't mean much, but for someone immunosuppressed, it can cause a lot of problems if you get this virus in your lungs or intestines. I have had it in my blood twice since transplant, but it was treated with an IV medication. Now that I won't be on the medication to prevent it, there will be a chance of me getting it again, but that's the chance my doctor is willing to take, because bone marrow suppression can be much worse and can keep me from fighting off ANY infection. The other med that was aiding to this suppression is one of my anti-rejection medications called Cellcept, and especially because of my recent rejection, he did not want to discontinue that one. He is hoping that my counts will be up in a few weeks.

Now concerning my smaller airways and my lower pfts, he is thinking we might see some rejection or infection on this bronchoscopy. The results will not be back until Monday unfortunately. If it is a negative bronchoscopy (in other words, nothing shows up), then he thinks this is probably just continuation of my chronic rejection, which started back in 2007. Chronic rejection can progress at different rates, and differs from acute rejection in that acute rejection is usually taken care of with a round of steroids, whereas chronic rejection is very unpredictable and can be slowed down, but not really stopped for good. You can have a sudden drop in your lung function and then stabilize for years, or it can be fast and you can lose all lung function over a period of months. My chronic rejection has previously been treated with Cellcept and Azithromycin. That seemed to stabilize everything. Now that my lung function is dropping again, if the doctor suspects it's the chronic rejection doing it, he will decide on a course of treatment. I asked him yesterday what that might be, and he said he won't make that decision until my bronch results come back.

This is just going to be a waiting game to see if my blood counts come back up, and to see what my lung function does. I recently started exercising again, and it seems that every time I start to get in shape again, something sets me back. I'm going to attribute that to being allergic to exercise!!! :) Just kidding... I won't let any of this stop me from continuing my exercise regimen. I will post again on Monday after I get the results. Love to all!

1st blog of New Year!!

Well, even though it was quick, we had a great Christmas. Casey got her iPod touch she wanted, so all is right with the world. LOL. We really do want next year to be all about giving to those in need and not to those who aren't in need, so that is going to be planned immediately, so that friend and family aren't shocked in early December with my idea. :)

We were able to go up to my hometown to see my grandparents and extended family on my mom's side, and to see my Dad's side of the family too!!! It was a great day. I love them all SO much, and I can't imagine not having all of them here.

We finally got our tree down and the house clean yesterday. It is amazing to have my house back. I'm not sad at all that the holidays are over. However, I am very saddened about my dear friend Angela's family. Her mom isn't expected to live another 48 hours. I just can't believe it's real. I truly hate cancer!!!! Please keep Angela and her family in your prayers. They are struggling as you can imagine.

I wish I had some monumental awesome thing to tell you, but I really don't. Casey is back to school and had a great, but cold day. She was glad she wore her long handles. :) Her school was really cold she said. She is in a geography bee on Wed, but hasn't done much studying for it. We will cram tomorrow night.... hmmmm... reminds me of my college days. LOL.

Jason goes on 1st shift on the 17th. It's a 10% pay cut, so I feel I need to find some kind of work to help get that back. Just not sure what to do. I'm not comfortable enough with my photography yet to charge for it, but I do plan on taking a Photoshop CS4 class soon, so that will definitely add to my photos. Still loving my 50mm f/1.4 lens. :)

Casey has several things she wants to do this summer, but it would take her away for 6 weeks. I told her she could do 2 out of the 3, but she isn't sure which 2 she would choose. I feel bad, but I LOVE my summers with her, and don't want her gone the entire summer. We will see what she decides.

I am flabbergasted... my hair has already grown about an inch. My hairdresser has always told me that my hair grows fast, so that's really good, b/c short hair is SO hard to take care of. I have naturally curly hair and when I leave it curly I look about 12. If I straighten it, I look my age, but it takes so long to fix. I can't wait until my ponytail is back, but am just thankful it's coming back at all. :)

To all my friends who don't have facebook, you don't realize how awesome it is to connect with those you haven't spoken to in 20 years until you get on there. I do wish you would all join.... believe me, I'm on there everyday and many times a day... haha!!!

I am ordering new glasses this week. Mine are old and worn out. I also go to Duke on Thurs for a much needed kidney tx appt. Oh for those of you who don't know tx=transplant. I always abbreviate without thinking of those who don't know that. I will go again the next week for a bronchoscopy where they biopsy my lungs to make sure the rejection is still staying far, far away!! I know it is!!! :)

I have many friends in need of lungs. I hope that you will keep all of the people in your prayers waiting on lungs, kidneys, liver, intestines, pancreas, eyes, tissue, heart, etc. There just isn't enough going around, because there are still those not signing their donor card. What a WONDERFUL last gift you could give someone!!!!

Ok before I go, I must shout out to Kristin, Nicole, Rhonda, Anne-Lewis (who turned 40 on Sunday), and Trenda who are my most dearest friends from VA. And also big prayers to one of my besties Angela, who's mom is in the process of dying as I write this blog. I can't tell you the sadness I feel. :(

I am looking forward to the new year. I hope all of you are too!!! Love to all!!

Randomness if I've ever seen it

This post is totally random. I will say anything that comes to mind, so don't expect it to make much sense. :)

I think that EVERYONE should accept EVERYONE and not judge. I have learned from my new and wonderful pastor that we should not judge. I have friends from every religion, sexual orientation, political affiliation, location, etc. I love everyone... just like Jesus did!!!!!!! Isn't that amazing?

I ordered a new shirt.. pics soon. that says "what are you so afraid of?". What it boils down to is this... we are so comfortable with the people we are familiar with and are so afraid of those who are different.. Well............ DON'T be. Jesus wouldn't be. Why do some people have to be. Especially those raised in the south? LOL.

Ok, another random thought. Why do we try so hard to figure out the right gift for our loved ones who have EVERYTHING already? Why not make a pact with your family that you will all give to a needy family or angel on a tree at church or in the mall, or some other needy family? It makes much more sense than giving someone something that they will just stuff in a closet b/c they have so much already. Right?

Ok, another random thought. Jacob was hot in New Moon!!!! Am I right? I hated him in the book, but dang.. I loved the movie. Can't wait to own it.

Ok on a sad note.. my cousin Garfield passed away this past week. How sad. He always had smiles for everyone. And also some sad news. I have lost 4 CF friends in a little over a week. The oldest age was in their 40's. :( It's so not fair. I'm angry, but also thankful that they have no more suffering.

Christmas decorations are done. Presents are not. I need to get on the ball. Only a few more weeks ppl. WOW.. can you believe it?

Any of you planning on vacations next year? I really want to go to Boston, then up to Maine. I hope that works out!!!!! Have a blessed Christmas everyone, and good luck with the decorations, parties, recitals, concerts, presents and of course family time. Love you all!

Birthday parties, Anniversaries and Bronchs

First of all a very Happy Veteran's Day to all of you who have served or are still serving in the Armed Forces. This includes my husband who served in the Marines for 4 years. :)

It was a great weekend celebrating Casey's birthday. I can't believe she is 14!! That means that one year from now she can get her learner's permit provided she takes driver's ed in the summer (which of course she can't wait to do). How scary is that??? Casey also got her report card on Friday, and made straight A's. I'm so proud of her for working so hard in her new and challenging school. It's been a rough 9 weeks, but her homework seems to have eased up a bit in the past few weeks thanks to the school's principal stepping in and asking the teachers to tame it down a bit. :)

Jason and I leave for Duke in the morning. I have a dermatology appointment and a lung transplant appointment tomorrow. We are going to stay the night, because I have a bronchoscopy on Friday. This bronch is to make sure that my acute rejection is gone. I am now back down to 5 mg of prednisone. The IV steroid and prednisone taper were not so bad. Of course I had to watch my blood sugars, but other than that, there weren't many side effects.

Yesterday was my one year kidney transplant anniversary. It's hard to believe it has been a year now. There have been very few bumps in the road regarding my new kidney. Praise God for that!

Tomorrow is my 8 year double lung transplant anniversary!!! If you would like to read about my lung transplant, you can go here.

A big humungous thank you to my mom and Uncle Joey. Without them, I would not be here now. For those of you new to my blog, my mom and uncle each donated a lobe of their lung to me, and my mom donated her kidney to me. They are my heroes and I love them both so much.

I'll leave you with a few pics from Casey's party and some pictures of her "new" room. I made the banner and decorated her bulletin board as a surprise for her last week...

Happy Birthday Casey

Happy 14th Birthday baby. I love you so so much and you are a blessing to all who know and love you. You have brought so much joy into my life, and I thank God everyday for allowing me to be your Mom!!! How very blessed I am.

If I have any readers left at all...

then maybe this post won't be for nothing. :)

Facebook is my go-to place now for info on my friends and to keep everyone updated on me. I'll try to catch up my blogger readers now.

Since my last post, Casey has started a new school, and she really loves it. It is A LOT of work and very challenging, but the environment is more of an academic environment instead of a regular public school environment, so it's just what she needed. Her goal is still to go to Duke University and go to med school. She still has her sites set on becoming a surgeon, so we will see how that goes.

She has also been running cross country this year. She is doing so well with it. I was worried at first, because Casey is and probably always will be a toe-walker, so I was concerned about her running, but her doctor gave her approval, so that's all I needed to hear. I wouldn't say Casey is enjoying it, but she's dedicated. I really hope that she continues to run after the season is over next week.

Jason is doing well. He is still working 3rd shift, which is pretty tough, but we are just so thankful he has a job in this economy. He does sleep well during the day, so that's a big plus. As long as I can keep the pups quiet, Jason will sleep a good 8 hours during the day. I never did that when I worked 3rd. LOL.

As for me, I had a birthday since my last post. I'm now 39 and so thankful to have made it beyond the age my doctors ever thought I would. Every year is a blessing! Well, minus the wrinkles and saggy stuff. :)

I am currently experiencing some mild acute rejection of my lungs. Well, since my lobes are from 2 different donors, I'm really only experiencing rejection of one of them, but they didn't tell me which one, so I am not sure whether to blame my mom or my uncle. haha. I am finishing up my 3rd day of IV Medrol (a steroid), and will start on a taper of prednisone tomorrow and decrease each day until I reach my baseline of 5 mg/day. I will then have another bronchoscopy (where they take a biopsy of both of my lobes) in November to make sure the rejection is gone.

I am also dealing with the same hair loss that I had after my first transplant. I finally got an answer at my last lung transplant appointment as to why I am losing it. All of the proteins I take in have been going to my kidney transplant site to heal it. Therefore, my hair hasn't been getting the proteins it needs. I was told that typically if a transplant recipient is affected by this, the hair will start to fall out about 3 to 6 months post-transplant and continue for about 9 months. So, as soon as your hair starts falling out, new hair is replacing it. I have strands about 2 to 3 inches long from where it started falling out and coming back in about 6 months ago, and I still have long strands that are falling out. I will have to end up cutting a lot of my hair off again, but I don't think I'll have to cut it as short as I did after my first transplant. I'm also back to (or close to) my natural color again, which is brown. I'm mostly wearing hats or wearing my hair up now, since it's crazy with fly away pieces and very thin long pieces. Thankfully, my hair does grow pretty fast. :)

I am very happy that fall is finally here! I love fall and winter! We are planning on heading to the mountains in a couple of weeks to see the beautiful leaves before they all fall away.

I am still loving photography and got a new lens from my hubby for my birthday. I'm having fun with it, but of course have at least 3 other lenses I want to add to my camera bag. It certainly isn't the camera that costs so much in photography. But the lenses DO make all the difference. Casey is enjoying photography too, even though she has very little time for it right now with her schedule.

The pups are doing good. Balin has had some stomach problems, but they have now attributed that to stress. He still hasn't adjusted to Mia, and I don't know that he ever will. I keep them apart the best I can. I am loving Mia so much though. She is the cuddliest little dog I've ever had. She's now a whopping 3.5 lbs. She looks huge to me.. haha.

The rest of my family is doing great. Dad is still antiquing and Mom is still babysitting my nephew, who is now 4. He will go to kindergarten next year, which is amazing to me. Time flies. My niece Caroline is going to the same school as Casey and loves it as well. My sis and her family are all settled in their new home and are loving it.

As for our house, it's still not up for sale. I guess it will be one day. Now, I'm saying to Jason.. let's just wait until spring, but he says put a for sale sign in the front yard now. We are going to try to sell it ourselves first, and will then go to a realtor if it doesn't sell. The last house I sold on my own was bought by the first couple who looked at it, so I really hope we are that lucky again. With this economy though, I'm not so sure.

My friend Trenda recently had her 4th child, a little boy named Levi. I am so happy for them. She lives in my hometown in Virginia. I really need to get up to Virginia soon and visit my grandparents and other family members, and my many, many friends, some of whom I haven't seen in years. Now that I've gotten in touch with a lot of them again on facebook, I want to see them!!!! There was a reunion of sorts this past August, but I wasn't able to go, because of the side effects I was having from some IV meds I was on, so I'm hoping to at least make the next one... whenever that may be.

Here are a few pictures taken this fall. If you are a facebook friend, you've most likely seen them. If not, enjoy...

Transform your skin

Transform your skin. Mine has been completely transformed with Skinceuticals CF. Below is the link to the website. Just remember, all the celebrities give all the credit to their dermatologists and medical prescription creams to transform their face. This is the one product my dermatologist recommonded. It's doing wonders...."www.skinceuticals.com... Plus if you have malasma, Tri-Luma cream is great at lightening it. It has greatly diminished my dark spots from malasma. Of course, the most important thing for healthy skin is wearing sunscreen with zinc in it, which I do everyday. All of this is really taking a lot of years off of my skin. :) Celebrities don't use those products they are promoting on tv. They see a dermatologist to recommend what to use. Mine even told me to use Cetaphil to clean my face with as long as I use the Skinceuticals and Tri-Luma products to help correct the damage. Getting sun on your face is the worst thing you can do. Wearing sunscreen is the best advice any doc can give you, but unfortunately most people don't listen until the damage gets bad enough to bother them, then it costs a lot to do "correcting".

Good luck.

Post and pics tomorrow?

Maybe!! We'll see how cooperative blogger is! :) I'm going to bed now though. Hope all of you are doing well. Keep my friend Meghann in your prayers. She just got new lungs at UNC. Last I heard she came through the surgery well, but I haven't heard any new updates.

Pink bows and Pink highlights

It's been a busy week with a new puppy, getting Casey ready to leave on a mission trip, Casey's last day of school, packing up the house getting it ready to sell, and oh yeah.. still fighting this infection.

I'm still fighting this C. Diff. It is definitely better on this new medicine, but it's not completely gone yet. I'm really hoping this med takes care of it, so I don't have to do IV's and go in the hospital.

Little Mia is the sweetest thing! She is so loving and cuddly. I think my maternal clock was ticking again, so I've (mostly) satisfied it with a new puppy who I can dress up in little pink bows and anything else I want.. haha. Casey rolls her eyes at this, but loves her pink collar and leash. Jason just tolerates. :) Balin still doesn't like Mia, but I'm hoping this will change as time goes by. I am trying to give a lot of attention to Balin too, but he just doesn't want to be around me when Mia is. At least he can still jump on things that she can't and get away from her. LOL.

Casey and her friends left for a mission trip for the week. I'll miss her so much, but am excited for her. Here are pics of Mia, and of Casey and her friends leaving for their trip. You can still see Casey's pink highlights some, but they really washed out a lot since I wouldn't let the hairdresser put bleach on her hair under the highlights. Oh well, I'd rather not start damaging her hair so early.










I just want all my friends to know that I am back to reading blogs even though I'm not commenting much. I love you all and am praying for you all!

Her Name is Mia

Thanks to everyone who voted!!! Mia won with 18 votes out of 57. Somer I loved your suggestion. Sophie is too cute, but we've already started calling her Mia... it really does just fit! Carrie, I can't wait to see pics of your Chloe!!!! Cara, I'm the same way. I didn't have my first small dog until Casey started having allergies to the large ones with fur. Now, we have to have small ones, like poodles that have hair instead of fur. We used to raise Australian Shepherds years ago when we lived on a farm, and of course had labs too. :)

Now, we have 2 toy poodles. haha. Casey does have 3 labs at her dad's house, but they are on the bottom floor, and Casey's bedroom is on the top. The only dog on the top floor with her is... you guessed it a toy poodle.

Mia is adapting to Balin, but Balin isn't adapting to Mia. He runs away from her and she just stands at the bottom of the sofa and barks at him. It's so cute. He is so unsure of what to think of her yet. She does well in her kennel until about 6:00 am and then she wants to get in the bed with me. She goes right back to sleep snuggled in my arms. It's a match made in heaven. :)

Thanks again everyone!!

Christy, Jason, and Casey

Please help name our puppy!

We got a tiny toy poodle yesterday, and we don't know what to name her. Right now we are calling her 'Lil Ball 'o Fluff, but I don't think that will be appropriate for long term. :)

Balin is unsure of her right now. She tries to "bounce" after him, but he just runs from her. I'm sure they will be best friends in no time.



POLL IS CLOSED. Thanks to all who voted. Mia it is!!!

Chatty Christy

FIrst I'll tell those who don't know (and I'm assuming most of you do since I have you on my FB, my mom talks to you, or you read my tweets) that I was diagnosed with C.Diff. on Wednesday night. I had been having some symptoms since I was in the middle of the last course of antibiotics that I took, but I always have intestinal symptoms on antibiotics, so I didn't think much about it. I had been off the antibiotic for about a week and I started having severe diarrhea, and a high fever (101 which is way high for someone who takes prednisone). I was feeling so bad that Jason took me to the ER Wednesday night around midnight.

The first thing I told the triage nurse was that I needed to be tested for C. Diff. After looking at my history, she agreed and sent me straight back. I have heard of so many people having this go misdiagnosed for way too long, and I didn't want to be one of those people. After about 5 hours in the ER, they informed me that I did have it and would start me on Flagyl for it (this is after talking to my transplant team at Duke, which he was way eager to do thank goodness). Of course being in the CF/transplant community I have heard horror stories regarding C. Diff. like not being able to get rid of it with Flagyl or the ONLY other drug that works on it.. Vancomycin, and one story I heard even involved removing a section of intestines to finally rid her body of it.

So, after having read "The Secret" and deciding that positive thinking goes a very long way, I decided right then and there that this Flagyl WILL take care of it, I will NEVER have anymore problems with it, and that will be that. :)

I will talk about something that some people think is taboo to talk about.. depression!!! I am an RN, so my thinking may be different than some of yours, but in my opinion, if you need to be treated for depression, get treatment. Don't "fight" it, don't think it's going to mysteriously disappear, DO something about it. Now there have been many times in my life that I have had what I call "situational depression", you know.. that depression that comes when some event in your or your family member's life just plain sucks and you feel helpless. A lot of those times, I'm all for waiting it out, looking for ways to change things, and talking it over with others. And believe me, I'm ALWAYS (no matter what the cause of depression is) for praying!!

Well, as I've told some of you, I've had some depression after my last transplant. Yes, it happened after my first one too, which required me to be medicated for it for about 6 months until things got back in order. So, I've been dealing with this depression for several months trying to work through it (not that it was a situational depression at all) by talking it through to others, praying, and trying to keep busy. The depression got worse!!!!!!! AND WORSE!!!!!! And finally to the point where I knew that I needed a mild anti-depressant to get over this hump. I started on one a couple of weeks ago and am already feeling more like a person again, and getting back in touch with those that I have withdrawn from.

Now there are some people who think you can pray your way out of depression. My question to those people is... can you pray your way out of Cystic Fibrosis, Diabetes, Cancer, or any other disease? I mean don't get me wrong, I do pray, and I do ask people to pray for me, but in addition to prayer, I take my insulin, I take my CF drugs, if I had cancer, I would definitely take the treatment. What's the difference with depression? As a nurse, I learned there is none. If I don't try to make myself healthier by treating this depression, then I may as well stop taking my anti-rejection meds too. The body is a "whole system". It's not just dictated by one bodily part or one system, it works by being healthy as a "whole", and believe me, mental health is a VERY big part of that WHOLE!

I know that some people are influenced by what their parents told them, and THEIR parents told THEM, etc. AND some people may even be influenced by Tom Cruise himself, LOL. But please, I beg of you, if you think you might need to be treated for depression, get help.. just like you would get help if you had diabetes or any other illness. It's NO different.