Cystic Fibrosis Awareness

This is for my non-Facebook, non-Twitter friends. I got purple highlights for Cystic Fibrosis awareness. Crazy but fun!!! XO

Lungapalooza: A Walk For Breath

On September 19th, 2010, the inaugural Lungapalooza: A Walk for Breath was held at Duke University Medical Center. The Lungapalooza is an event to raise money for the Lung Transplant Foundation, a non-profit organization who's mission is "to promote and advance research in order to improve long-term outcomes among lung transplant recipients".

Below is a slide show put together by Amber, a dear friend who has had two double lung transplants, and who was a major facilitator in making the Lungapalooza happen. The photographs were mostly taken by me and by another amateur photographer who works for Duke University's Center for Living.

Enjoy!!!

Lungapalooza from Amber Wesemann on Vimeo.

Family Mountain Vaca

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:

Thankfulness

As my friend Lori and I sat down at a half-cleaned table in the Duke South cafeteria at Duke University Medical Center, we reflected on the two people sitting at the table behind us. We talked about how weird, amazing, and awesome it was. We talked about the rarity of it, and how there are only a handful of people in the world who could be sitting where we were and thinking about what we were thinking.

Here's the thing.... Lori's mom Sheryl gave her part of her lung when Lori was on the verge of death. Her dad was the other donor. Lori was the 2nd living-lobar transplant done at Duke University Medical Center (I was the 4th), a transplant center known for it's cutting edge medical care. Here I come a year later... dying to see someone who has had a transplant... there were no transplant chat rooms at that time, and I had never talked with anyone who had a lung transplant. A nurse introduces me to Lori, another transplant recipient who received the same type transplant I was about to receive. I was amazed.

Not only at her strength, beauty and courage, but at her nonchalant attitude about it all. I was so happy to meet her and later her sister Shannon, who was waiting on lungs the same time I was. Yes... two sisters with Cystic Fibrosis, one who was post-transplant, one who was pre.

So back to today. Lori and I sitting at one table so we could have "young" girl talk. Our moms, our donors, our life savers, sitting at the next to have adult conversation and talk about the difficulties of having children with chronic illnesses. Lori and I talked about it. We were in awe for just a minute that "we" had part of "them" inside of us.

Life is not only about giving, but also about appreciating the gifts you have been given. Thank you Mom. Thank you Uncle Joey (my other donor). Thank you Sheryl. Thank you Dave (Lori's dad). You are Lori's and my heroes. We love you!!!!

Random pics

A blog post

I really didn't know what to name this post. Sometimes I feel like I have to blog just to say hi to those who don't follow me on facebook, and of course to give a little more detail than I do on facebook... I mean come on... it only allows for so many characters per status message, and you don't want to sit all day and post status updates..... well, most ppl don't.

Just a few things going on in my life...

1.) Jason is snoring.. I mean right now he is snoring beside me. It doesn't help my insomnia at all, but at least my loving husband is going to get a sleep study this Friday. We are thinking he may have some sleep apnea and might need a C Pap machine. I just want something to fix it, and so does he, because he wakes up so tired. We are definitely enjoying him on first shift though, and haven't noticed a big change in his paycheck yet. It will catch up with us, I'm sure. LOL.

2.) I don't like to be one of those bragging moms, but I do have to do a tad bit about Casey. She tells me last week, the night before report cards are supposed to be issued, that she might be getting a B... OH MY!!! She was SO worried. I promised her that a B in 8th grade was not going to hurt her when it comes to college admission. She so wants to go to Duke and is afraid that she will hurt that chance if she slacks at all right now. Well of course she had straight A's in all 8 classes. Most of them were 100s, one a 99, one a 98 and one a 97. I'm so proud of her!!!! She is also in several clubs, including the Beta club at her school. She works hard, and I'm so proud of her for it. She will start back her piano lessons soon.

3.) This weekend is Jason's and my 4th year anniversary, AND my parent's 47th (?) anniversary.... wow! It feels longer than 4 years for Jason and me, but maybe that's because I was married almost 10 years the first time. That makes me sound really old, huh? We are meeting some friends at a Japanese steakhouse nearby. Casey is also taking a friend. We were thinking The Melting Pot, but we did that last year, and wanted something different. I'm so happy to be with a loving, thoughtful man, who also loves my daughter and takes care of both of us. :)

4.) I'm working out like a crazy person!!! I hope it lasts. haha. I'm doing several DVD's, one of which is the Biggest Loser Bootcamp. I love it!!!!!!!! Of course it's hard right now to stand up from a sitting position, because I am so sore, but I'm sure that will get better.

5.) I go see my pulmonologist on the 18th. We will see how my pulmonary function tests look and he will decide whether or not I need to be treated for chronic rejection. I'm praying that my small airways are better. I haven't had to use an inhaler the past few times I've exercised, so that's good!!!! I'm also meeting a dear friend of mine for lunch on that day. Her name is Tiffany, and I have heard her speak before to medical professionals about their relationship with their patients... she was awesome... and I met her briefly, but other than that, we have only had correspondence on facebook. She has CF and has had TWO double lung transplants... what an inspiration.

6.) The Charlotte Observer is doing an article on my Mom and me for Mother's Day. What a great way to bring recognition to my mom for giving me life 3 times, to bring awareness to Cystic Fibrosis, and organ donation. They are going to come interview my mom, Casey and me in a couple of weeks.

7.) My hair is growing... FAST! I'm so happy about that. It straightens out a bit as it grows longer and is much easier to manage. I can get a small ponytail now. :)

8.) My photoshop class is coming along. The last class took me 5 hours to complete, because of all the work involved and the assignments afterward, but at least I'm learning. I still have about 3 classes to catch up on.

9.) I ordered new glasses today. The cutest Coach glasses called Hilary. They fit my face perfectly. I will get them in 5 to 7 days. My prescription hasn't changed that much, only slightly, but I still need new frames.

10.) Jason and I start a new Lifegroup on Thursday. It's a small group of Christian people who get together and connect. We do have lessons to do and reading to do that we discuss, but it's mostly about fellowship. It's been awhile since we've been in a lifegroup, so we are excited... this 1st shift is giving us much more flexibility with our schedule!!! :)

I do want you all to keep my dear friend Lori in your thoughts and prayers. She is experiencing some chronic rejection that is a rare kind, and treatments are not the same as with the most common chronic rejection. Her center is in touch with Duke to figure out the best treatment plan.

I wish all of you a Happy Valentine's Day!!! Lots of love and hearts. :)

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....

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!