Ups and downs and all arounds

Hi blogger world! Another lengthy break between posts. I thought I would give everyone an update on the happenings in our lives.

I'll start with my health and get that out of the way. :) Most of you know they found skin cancer on my toe of all places. Yeah, that's what you get for being immunosuppressed. To make a long story short.. thought I was going to have to have it surgically removed, and a skin graft done. Saw a surgeon at Duke yesterday and he seems to think "that would be like putting a campfire out with a fire truck". Hehe. He said it would do the job, but he thought that was way overdoing it. Squamous Cell Carcinoma or SCC can become invasive and in rare cases metastasize, but he doesn't seem to think that I have reason to worry about either of those. For right now, I'm just going to be using a chemotherapy-like cream on it called Aldara. I use it on my face also for some places I have there that look suspicious. I see my dermatologist pretty regularly at Duke, so she will keep a watchful eye on it.

I have been having some swelling for the past month or so. I saw my nephrologist yesterday, and he doesn't think it's my kidney causing it. He ran a few extra tests to make sure, but if I continue to have it, I will need to have some studies done on my heart and liver to rule them out as the cause.

Let's talk about hair loss.. ughh!!! So, you all know I lost most of my hair after my lung transplant, a lot of my hair after my kidney transplant, and that the rATG treatment I had for my chronic rejection back in March was beginning to thin it too. Well, these past 2 weeks have been awful as far as hair loss goes. I'm not so sure why I'm so prone to hair loss when I'm given meds to knock out my immune system. I have friends who have been given much stronger meds, and it didn't affect their hair in any way. I'm frustrated!!!! I really am. This is the 3rd time, and I know if I ever have to get another treatment for my chronic rejection again, it will happen a 4th. I am taking Biotin and using men's rogaine (per my dermatologist's suggestion), but so far, I'm not seeing any difference.

So on to more exciting things... Casey has had a very busy summer. She has been to the beach twice, to Sint Maarten, will be going to visit her cousins in Pennsylvania for a long weekend, and will go with my family to the mountains in several weeks. She is currently in the middle of her driver's ed classes. One week down after today, and one week to go. She gets her learner's permit in November.. YIKES!!!!

She wants to start tutoring this coming school year to raise money for her Spain trip that she is taking next spring. Her father and I have told her that we want her to raise $1000 for the trip, so she has already been saving her allowance. We'll see how that goes. LOL.

Jason is working a crazy shift now.. 11 am to 8 pm. It's really not so bad, because he gets up early and gets things done, and since we eat dinner late anyway, he is home for dinner. Of course it's not the ideal work schedule, but much better than the night shift. We aren't sure how long he will stay on this shift.

We FINALLY, yes FINALLY have our house up for sale. We've had one interested buyer, but haven't heard back again from her. We haven't really advertised yet other than sticking a for sale sign in the front yard, so I'll be getting on that this coming week. We are looking to move about 20 minutes from here, which will be closer to Jason's work, and closer to the school that Casey's current school will be moving to in 2011. Plus, it will get us out of city taxes which will be nice.

My birthday party is coming up as most of you know. We still have a lot of planning to do.. most of all... meeting with our caterer about the menu. I'm super excited about seeing all of my family, old friends, new friends, friends I've only known from the net, etc. What a great time it's going to be. I have to admit I'm a little anxious though, because of my hearing loss. I don't do well in social situations that are noisy because of that. Of course I'll have my hearing aid on, but I'll still struggle with it.

The rest of my family is doing well. My nephew goes to kindergarten this year.. just super unbelievable. The pups are good, and in general.. life is good. I hope it is for all of you as well. XOXO

Random photos:

Bronchoscopy results

I just realized I hadn't posted my bronch results on my blog. They were negative for infection or rejection, which is good, but still doesn't rule out chronic rejection. I continue to have some wheezing with exercise which indicates something going on in my small airways, but other than that, I feel great. My pulmonologist wants me back in 4 weeks to repeat my pulmonary function tests again and see if my numbers have come back up. If not, he is thinking of starting me on a medication called Rituximab, hoping that it would reduce my high antibody count and therefore stabilize any rejection I might have going on. There are many other medications out there to try, so if one doesn't work, we can try another.

I was able to meet one of my CF friends on Monday. We knew each other through the internet, but had never met in person. Her name is Amy, and she had her double lung transplant at Duke 4 months after me. It was so exciting to meet her!!! We hope to meet her hubby Roger soon!

I started my online Photoshop class last week. I haven't learned a whole lot yet, but I know that it is going to be very helpful. I'm hoping to really enhance my photos with it. I know it takes years to master Photoshop though, and my old brain isn't what it used to be. LOL.

Jason and Casey are doing well. Jason is adjusting to first shift with his job! It's nice to have him home for dinner and home at night. Casey gets report cards today. She's pretty sure she has all A's. I'm so proud of her for working so hard. She is thinking now that she might want to work for the FBI instead of becoming a doctor. I don't know about you, but when I was her age, I changed my mind about my future every week or so. I never dreamed at that age that I would ever want to become a nurse. Casey's step-mom has a sister and brother-in-law who work for the FBI, so if she becomes serious about this, she has people who can tell her all about how it is in REAL life, instead of how it's portrayed on TV. :)

I'll leave you with some random photos. I hope all of you are doing well and having a great winter....

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!!

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...

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!

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!!!

The Biltmore Estate

We visited the Biltmore Estate on Saturday. The 250 room home is the largest in the U.S. It took 6 years to build and it opened in 1895. George Vanderbilt lived there with his wife and daughter. It still belongs to his daughter's family, but of course is open to the public now. The estate originally consisted of 125,000 acres, but now is 8,000. They have a winery and gardens. You can read more about the history here.

If you have ever seen the movie "Hannibal", it was Mason Verger's house. Much of that movie was filmed in Asheville, where the Biltmore is located.

Here are some pics from Saturday. Unfortunately, no pictures were allowed in the home itself: