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:

Mish Mash

Hey everyone!!! Wow, it's been forever and a day since my last post. Sorry about that, especially to my Virginia friends. :)

Things have been going well since the rATG infusions. I have been in rehab with a physical therapist who is amazing!!! She has helped me build up my core, and strengthen my arms and legs. It was much-needed... trust me. I still have a ways to go, but we are well on our way to getting me back in great physical condition. Yay!

I had my first follow-up yesterday with my pulmonologist since the rATG. Of course, this included pulmonary function tests to see if the rATG helped improve my numbers. Unfortunately it didn't. :( That's the not-so-good news. The good news is that even though my numbers were down a few percentages, it was still in the "same range", so therefore, I'm not worse. What my doc thinks is that the scar tissue already in my small airways is "damage done". What my doc hopes is that the rATG has stabilized my chronic rejection, and will prevent me from scarring further. Remember, the scarring is due to my own white blood cells attacking the foreign lungs (lobes) in my body, and he hopes the rATG has stopped that. Basically, we won't know until my next appointment in 2 months. He hopes to see that I'm holding steady, or that my lung function has even improved a bit because of continued exercise. He did say that sometimes when someone starts chronic rejection, they start a downward trend and it continues pretty fast. He's not seeing that with me, so that is awesome!!!

I also saw my nephrologist yesterday (kidney doc), and he seemed pleased with most things. He ordered some extra tests to check on a few things he's concerned about, but nothing big. Basically, my kidney function is holding steady, so that's great news. :)

My nephew's 5th birthday is tomorrow. I just can't believe he is 5 now. We are going to Jason's parent's house for lunch, and then on to my sister's house for the birthday party later on. I asked my nephew what he wanted for his birthday, and he said "just a little teddy bear". Trust me, he doesn't need another teddy bear, but it was just so cute how he put it. Casey and I are going today to get him a gift, although I might have to pick up just a tiny teddy bear, just because he asked for it.

Casey has tons of plans for the summer!!! She is going to the beach with her two best friends, going to her cousin's house in Pennsylvania, going on vacation with her dad and step-mom, going on vacation with my family, and then possibly going to a camp with her friends. It's going to be a crazy-busy summer for her, but she's going to have a blast!

Very exciting news... Casey gets her braces off this coming Monday. I will have to post pictures of before and after! She can't wait. It will be just a couple of weeks shy of 12 months since she got them put on, but the orthodontist had said she wouldn't have to have them on a long time.

Jason is well, but not liking 1st shift as much as I like it! I love having him home for dinner, and getting in bed at a decent time. I'm hoping he will get used to it though. :) He's been doing some landscaping, and trying to perfect this house to get it ready to sell... yes, I know I have been talking about this for over a year now, but I think we are finally close. There is just so much competition right now, and very little buying going on, so I really want it to appeal to the buyer. Lots of things with my health have set us back, but I'm not planning on anything stopping us from getting it on the market this time.

I hope all of you are enjoying Spring, and enjoying the little things in life. I know I am! Love to all! XO

Finally a plan!

Well, most of you know I've been an inpatient at Duke since Monday. I came here to get rATG, a medication that basically wipes out your immune system. They are hopeful that my lung function will come back up with that, and the chronic rejection will be stabilized with it.

After talking with one of the lung transplant pulmonologists, she thought that it would be a good idea to desensitize me to an IV antibiotic and keep me on it for several weeks (the duration of time that rATG normally keeps your immune system suppressed). The reason for this is my chronic sinusitis, and the tendency for it to flare up and cause an acute infection in my sinuses, which could potentially go to my lungs. I was desensitized to Ceftazidime on Tuesday.

I was supposed to start the rATG yesterday, but my labs showed that once again my bone marrow was suppressed and not producing the red and white blood cells like it should. My numbers had fallen quite a bit from last week's clinic visit to yesterday morning. Because of the drop, it would mean that my body would have a harder time fighting off infection if I would have gotten the rATG yesterday. They decided to hold off on it, and give me two medications that increase the bone marrow production of both white and red cells. They wanted to wait and check my labs today to make sure my bone marrow responded to these two meds.

My labs this morning DID show a big improvement in just one day from the medications. That means that my bone marrow should keep responding, and that rATG should be safe to give. Therefore, and a BIG YAY FOR THIS, I'll be getting my first dose sometime in the next few hours. Side effects from this medication are basically flu-like symptoms, so I may not be feeling the greatest for awhile. If I do well with it, I should be able to go home Sunday or Monday. I'll be on the IV antibiotic and an oral antibiotic at home for 3 weeks, and another IV anti-viral medication that they give after giving rATG. They will also keep me on the two medications they started yesterday that are helping out my bone marrow.

I know it sounds confusing that they would want to raise my white blood cells with the medication they started yesterday, only to suppress them today with the rATG, but there are several different kinds of white blood cells, and all of mine have been suppressed with my bone marrow. With the rATG, they basically want to lower the lymphocytes that target b and t cells and therefore can cause rejection. Neutrophils are the white blood cells that kill off viruses and bacteria, and I need those, so that's the reason for bringing all of them all up first. I hope that made sense. :)

I'll keep everyone posted on how this all turns out. They won't know for awhile if the rATG has helped or not. I'm not sure when I will come back to clinic to repeat my chest xray and have pulmonary function tests again. I hope all of you are doing well!!! Love to all!

Things to do before tomorrow

Everyone else going into the hospital tries to get too much done the day before also?? Right? Yeah, that's what I thought.

I'm making my list while I enjoy my coffee. :)

1.) Shower and shave! ha!

2.) Finish laundry

3.) Pack clothes/toiletries

4.) Make sure house is clean

5.) Pack up meds, diabetic supplies, nasal irrigation, OTC's

6.) Fill bird feeder

7.) Bathe doggies

8.) Call necessary people

9.) Pack up laptop and accessories

10.) Pack up camera and accessories

11.) Go to Target for snacks and other items

12.) Go to library

14.) Access port-a-cath

13.) Give TONS of love to Casey and the pups!!!


I am hoping they get started tomorrow on the rATG, but have a feeling it will be Tuesday. I am assuming I will have to have a nurse with me the entire first dose to monitor for reactions, so that requires an extra staff person (just like when I get desensitized to an antibiotic). That means scheduling changes, and that usually takes a day.

I forgot to mention in my last post that not only are they seeing changes with my lung function tests, but they are also seeing changes on my xray. They have noticed that my smaller airways are stretched out a bit, which means that air is getting in there and getting trapped and cannot get out. The reason for that is the scar tissue that develops there when you get chronic rejection. They are hoping this med will help that issue also.

Ok, coffee is done and I have to get busy. I'll be facebooking and blogging this week, and I'm sure for those of you on my FB, you will continue to see goofy pics that Jason feels the need to take. You know.. the sign pictures. LOL!!!!

Have a great week everyone, and please keep me and all of my CF friends in your thoughts and prayers. Many are struggling! Thanks!! Love to all!

Good? No!!! But that's ok....

All righty!!!! I saw my lung transplant pulmonologist today. Before I saw him, I had the normal pulmonary function tests, chest xray and blood work done. First, I'll give you the GOOD news. :)

My blood counts are up, which is a very good thing. My bone marrow seems to be coming out of its depression and producing those red and white blood cells like it's supposed to! Whoo hoo! Go bone marrow!!!

On the other hand........

My lung function tests remain about the same. I was really thinking that little percentage increase was going to make a difference, but my doc informed me that it's still quite a bit lower than it was 2 months ago. Sooooooo of course being the aggressive (thank God.. literally thank God) doc that he is, decided to do something about it!!!!!

Pending a negative CT scan that I had today (meaning there is no infection hiding in my lungs), I will be admitted next week for some good ole rATG!!! It's a medication that pretty much wipes out your immune system to stop any rejection that might be going on. We are hoping and praying that it works. My pulmonologist didn't want to put me on Campath, which is a much stronger med, because I seem to be very "infectious" and get infections very easily. He didn't want to push it unless he has to!!!

So it seems I'll be spending a few days at Duke. At least it will help me catch up on my Photoshop classes, huh? :) I'm not really worried. My doc is so aggressive and catches things early. Chronic rejection is so common for anyone 5 years or more out of lung transplant, and I'm over 8 years out!!!! The lungs are the one organ that seems to reject much easier, because it is exposed to the outside environment, unlike other organs.. sayyyyyy like my new kidney. If this rATG doesn't work, then my doc will just try something else. I have all the confidence in the world with Duke's transplant program. SO, so happy to be a patient there. I feel totally blessed!

OK, so that is really all I have to say. I'll update if my CT looks good and my orders are written for admission next week. Love to all!!!!

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 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!!

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...

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.

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.

Missing in Action

Well, missing from blogger world at least. Things have been pretty busy here. We've been getting our house ready to put up for sale. It seems when we think we are getting close, there is more to do. Jason is putting up new fixtures outside today. I didn't realize how bad the old ones looked. We did manage to get quite a bit of furniture moved out to a storage building, so the rooms look larger now.

Most of our plans for the summer consist of getting this house on the market. Casey is going on a mission trip, so I'm happy for her. We won't be taking a big vacation this year. I'm ok with that! My dear friend Lori is coming for a visit in a couple of weeks. I can't wait! We have a lot of catching up to do.

Please keep my friend Sara in your thoughts and prayers. She got new lungs in 08, and is experiencing some rejection right now. She had a major treatment yesterday that completely knocked out her immune system, so I'm hoping she doesn't have too many side effects from that. She's the one I've blogged about before who ran a 1/2 marathon only 8 months after her double lung transplant!!!

Yesterday we went to my SIL's house for her youngest son's 1st birthday party. Her boys are a delight to photograph. She has a 1 year old and a 6 year old. After taking pics yesterday, I realized more than ever how bad I need a new lens for my camera. The more photography you do, the pickier you get I guess. I've been busy part of the day cropping feet out of photos.. haha! When you take pics of a toddler on the floor at a party, you tend to get a lot of feet in the background. Here are some of the pics. I love the one of Jason's sister and her sweet little boy.

Dear Diary...

I almost didn't write to you tonight because the internet is so slow, but I decided to sit and wait for this page to pull up, because I really have SO much to tell you.

First of all.. Bristol Palin... you know, the preggers girl (well, she's had her baby now) is speaking out about teen pregnancy. What is everyone ragging her about? She made a mistake (believe me.. one that many, many teenage girls make), and she got pregnant. Welllll.. she's got two choices at that point. To terminate the pregnancy or have the baby. If she has the baby, she has even more choices.. like keeping the baby or putting him/her up for adoption. Bristol chose to not get an abortion. SO whyyyyyyyy are people ragging on her???? Unbelievable! They should look at her courage and talk about THAT!!! I mean tons of girls don't have this courage. Not that I judge them in anyway, but why are people judging HER??? She could have gotten an abortion and went on with her perfect little, ambitious life, but she didn't. She chose to keep her baby!!!! But we all know that society is going to find a problem with whatever you do, right... haha! Look at Miley Cyrus... sweet, virgin girl, who I think is a great example for my daughter by wearing a purity ring... AND she's ridiculed by everyone in Hollywood and elsewhere. She's too GOOD for them. People are telling her to make a sex tape.. I mean come on!!!! Geeze... you can't ever win.

So diary, that's not the only thing bothering me. We lost another CFer tonight. He was 60 and the brother of a great friend of mine named Brad. Yeah, he lived way beyond the average life expectancy for a CFer which is 37, but that doesn't make it any easier for his family and especially his mom, who has already lost 2 children. I'll be praying for the King family for sure!

Casey sent me a text message tonight (she's with her dad a few days). It said "Missing Clark, Rich and John". Just so you know diary, Clark is the guy at church we have been praying so hard for. He had bladder cancer at such a young age and went to Mexico after they told him here in the states that there was no more hope. He passed away this past Monday. :( Rich and John are CFers whom Casey met at the 2004 Transplant Games in Minnesota. They died after that. Casey has always had a hard time with their deaths. I do remind her that we will see them again, but it provides little comfort for her at this time. I think it has something to do with her fear of me dying.

On a really good note diary... my friend Jeri is doing so good. She had her lung/liver transplant .. uhhhhh... well, it's been a couple of weeks ago now. She is exercising and doing so GOOD! I'm so happy for her. My friends who have prayed for her and thought about her over the weeks are awesome.

So, I've tried writing a book or two in my life. One was a medical mystery that involved CF. I got to the 4th chapter and got writer's block. Then I started writing a House episode, which I think was pretty good, but once Cuddy got pregnant, I got writer's block. See the pattern?????? Sooooo I'm looking at writing my life story, BUT in the form of a fantasy novel. We'll see how that goes. I've made a few notes. I'm really hoping I get past the 4th chapter on that. :)

I'm catching up on the Arrested Development episodes. What a great show!! Absolutely hilarious. I'm really not sure why this was cancelled. Ron Howard directed and narrates it. It's great! There is a movie coming out in 2010, so I want to make sure I'm all caught up before it comes out.

My fibromyalgia is acting up. It's because the hot weather is coming. Last summer I was debilitated from it in many ways. J and I are thinking it might be from the humidity in the air that we don't have in the winter. We aren't sure, but it's definitely rearing it's ugly head again. It's not debilitating yet, so diary... don't worry about me yet.

My blood sugars are out of control this past week. They have been doing SO good, but this past week, My meter has read more 300 and some blood sugars than it has in a very long time. I do wish my transplant docs could put me on a steroid-free protocol to help with that, but I think they will only do that if you have had a kidney transplant ONLY.. the lung transplant kinda throws that one out the window!

I'm exercising. Yeah.. but... I've pulled a muscle in my back. My physical therapist told me last year that I was using my QL's in my back to lift my hips and legs instead of using my quads more. SOOOOO I guess when I've been using the stepper lately, my QL's have been overworked. Thanks to my massage therapist hubby and Tiger Balm, I'm feeling better. I just did lunges and squats tonight instead of the stepper, to hopefully give those QL's a rest.

There were tornados in my area today. Was I scared??? No, not really. Our local news makes SUCH a big deal out of ANY change in weather, because, it's very boring here... so I figured their bazillion hours of coverage was just a way to get ratings. :)

I do however, love the rain! All those people complaining about the NC rain... well... I just don't want to hear them complain this summer when we have a drought.... like we do EVERY year. ♥♥♥ to rain!!!!

So yeah Diary.. I'm addicted to Twitter, or getting very close to that. I have so neglected blogger, and so NOT neglected Twitter, that I think Blogger might be jealous. But I'm finding it much easier to fit my thoughts into 140 characters than it is to think LONG, COHERENT, INTERESTING thoughts to put down on my blog. They really might have something with that micro-blogging thing. It's more for those of us who get writer's block.. and well, diary, you know I surely get that.

Jason is at work, Casey is at her dad's, and Balin is asleep.. but no.. I don't feel alone, because I have you diary.. the only one who is always there.. no matter what. Thanks for that!!! :)

I should probably go to bed now seeing how it's 4:00 am. I'll be complaining tomorrow about how tired I am if I don't. Thanks for listening as always!

I've been horrible

I have done a really bad job of updating my blog. Feeling good is a wonderful thing though!

We helped my sister move today. She bought another home in the same neighborhood she's lived in for 7 years now. It's just larger. It's a beautiful house. I'm so excited for them.

I've been exercising like mad! I'm feeling good and have energy now, and I'm doing something with it! I even bought a stair stepper that Casey and I are both using. I'm going to have a booty if it kills me. LOL.

Are any of you "Twihards" going to Twicon 2009 July 30th through August 2nd? It's in Dallas, and they are going to have tons of stuff for us Twilight fans, including a Volturi masquerade ball, guest appearances from the stars of the Twilight movie, and a fansite meet up. It should be great fun. We are thinking about taking Casey, but haven't decided yet. It's quite expensive.

Is it just me, or are any other CFers/transplant recipients/other immunosuppressed people concerned about this?

I hope all of you are having a healthy, happy weekend! If you have time, check out my hubby's blog.

I Acknowledge...

That...

I have not been doing a good job of keeping up with my blogger friends lately.

I am behind on my photography classes.

My floors need mopping.

Closed minded people make me hysterical sometimes.

I am only on page 64 of the book I'm reading for the online book club.

I went back to bed after taking Casey to school and slept until 2:20 this afternoon.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
News...

My friend Jeri, who had a double lung transplant and liver transplant last Thursday, is doing GREAT! She might be getting out of the hospital tomorrow!!! Is that unbelievable or what? I'm so happy for her. What a fighter she is.

My friend Clark, who has cancer and was told to call in hospice, is doing better. He is still in Mexico receiving treatment, and he is sitting up eating and feeling stronger. Yay!!! Definitely an answer to prayer! He still needs your thoughts and prayers though. He isn't out of the woods by any means, but it's just great to hear that he's feeling better and actually able to eat instead of having to rely on parenteral nutrition.

My kidney transplant appointment was very uneventful yesterday! That's a great thing. :) When the doc came in, I was eating chocolate because my sugar was low. For all of you diabetics, you know how sometimes you get a little delirious when your sugar gets low? Well, he must have thought I was a little off my rocker. I acted a little bit like I was drunk. Thankfully, Casey was in there to correct anything I said that was off. haha. I was fine after about 10 minutes. Anyway, my labs look great!!

I got to see 2 transplant friends yesterday. I had met one of the girls right before my transplant. She was about a year out of her transplant when I first met her, but was still on oxygen. She had a really rough time after her transplant, but she's been doing great ever since. She looked awesome yesterday, and we had a great lunch together. Then I got to see another friend, who I only knew online. She was speaking to healthcare workers at Duke about patient advocacy, so Mom, Casey and I went to hear her speak. What a great speaker she is... and so funny! I got to meet her briefly afterward. It's so much fun meeting online friends for the first time in person. I have NEVER been disappointed!

I hope all of you are having a great week! Casey went back to school today. Their spring break was cut short, because of make-up snow days. We did have a good week though!!

Casey just sent me this picture. She took it on her phone yesterday. It's of me and Dana, my friend I met for lunch yesterday...

Mish Mash

Casey has her first orthodontist appointment today. 

Casey got accepted to a new school, and we went to an informational meeting about it last night. Apparently this school looks better on college resumes than even AP classes in a regular high school. There was a lady there who had interviewed with Dartmouth, and she said they put students from this type of school at the top of the pile!!! Holy cow!!! Dartmouth? Obviously this tells you how challenging this school is, so Casey is definitely in for some hard work! Yikes!

Health is good. I have actually been feeling better in the past 2 weeks than I have in years (well, with the exception of some CF intestinal issues the past 2 days). 

I am SO behind on my photography classes. I have 5 classes to catch up on. I'm being a really bad student.

My house is a mess! What have I been doing all this time I've been feeling good? Not cleaning house, that's for sure! :)

Balin is back to normal. We are giving him a Pepcid everyday, and he hasn't thrown up since. His back seems like the inflammation is completely gone. Yay!

Easter is this weekend. Do any of you have plans? Our plans for Sunday include church, my family, and Jason's family. It will be a busy day.

I head back to Duke next week for a kidney transplant appt. Afterward, I'm meeting a fellow CFer/transplant recipient friend I haven't seen since 2002. I'm really excited to visit with her!

That's all I've got for ya! I hope all of you are having a great week. Happy Wednesday!

Amazing or what?

Average wait time for a cadaveric lung transplant at Duke is now 3 weeks!!! Can you believe it? This, of course, is after you get moved to the top of the list. I almost fell over when I found that out today. They aren't doing anymore lobar transplants though. They actually haven't in awhile. With a fairly new medication called Rituximab that lowers anti-human antibodies in your blood (the high anti-body count is the reason I had to have relative's lobes), AND with the short wait time for a cadaveric transplant.. they really don't need to. 

Anyone waiting (or who will be waiting) on a lung transplant should read this quick article.

So, I got to see my favvvvvvv doctor today! I really don't know what I'd do without him. I started going to Duke exactly 8 years ago this month, and he has been my doctor ever since. He's such a patient advocate! I had a doc like that in Charlotte too, but I don't see him anymore except for the occasional "pop in visit" to say hi.

My pfts (pulmonary function tests) are stable. My fev1 was a little up, my fvc was a little down, but overall they were stable which is good. My doc was very pleased with everything, but he did tell me I need to exercise more. :) My labs weren't back yet, so I'll hear about those tomorrow.

Balin, our toy poodle, is acting like he's in pain tonight when I touch his side. I'll most likely be taking him to the vet in the morning. I sure hope he's ok. He's actually sleeping right now, so that's good, but he sure doesn't want me picking him up.

Jason, Casey and I might go to the hockey game in Charlotte tomorrow night. We haven't decided yet. There is also a play at a local high school that's another possibility. Casey's cousins from Pennsylvania are coming through on Saturday on their way to Florida, so she'll go to her dad's on that day to see them. Jason and I have dinner plans with friends Saturday night. Casey is off of school on Monday. I'm so glad! Is it a holiday? I have no clue!!!

For all you girly girls out there, need a Beauty Fix?

I hope all of you have a wonderful weekend!!

Is it Wednesday already?

Time is flying. Where has the week gone? Tomorrow I'm headed back to Duke for an appointment with my favorite doctor... my lung transplant pulmonologist. He'll be looking at my Prograf level to make sure we are on track with the lower dose that I'm on, and also my kidney function. Of course, he will also be looking at my pulmonary function tests like always. My numbers were down a little bit last time, so we are hoping they are back up.

I think I'm over-diuresing (if that's even a word). I've been on a diuretic since about a month post-kidney-transplant. I was getting swelling around my ankles and in my fingers, so they started me on that. It's very common for someone who's just had a kidney tx to be on a diuretic. The past few days, I've been very dizzy when I stand up, my skin is starting to dry out, and my weight is down below 100 again. I know that part of that could be my decreased appetite because of the nausea, but I'm also thinking that I'm dehydrating myself. We'll discuss that as well tomorrow. My blood pressure was the lowest it has been in months last night, which of course could be a sign of dehydration, and thus, the cause of my dizziness.

Please pray for a friend of mine... A. A's kitchen caught on fire Monday night, and did right much damage to the kitchen and some smoke damage in other parts of the house. A's family has been through a lot in the past couple of years. It seems like it's one thing after another. We were just talking about going to the Cayman Islands with them this summer. I'm not sure if that will still be on or not.

Here is just one more reason I am thankful for my Mac! :)

I hope all of you are having a great hump day. I'll update after my appointment tomorrow.

Results

My kidney transplant coordinator called this morning. The results show Prograf toxicity. This is better news than rejection of course. Prograf is the anti-rejection medication that I have been on since my lung transplant in 2001. They think that it is part of the reason my native kidneys failed in the first place. It's definitely hard on the kidneys! So, now that they see it is affecting my new kidney, they are going to first start by lowering my dose.

Prograf is monitored according to its level in your blood stream. They usually keep my level around 7-9. With a kidney transplant, you can keep it much lower than that, but with lungs, it gets trickier, because they are much more likely to reject than a kidney. Since I did receive relative's organs, and am a little less likely to reject than someone who received organs from a non-relative, my lung transplant pulmonologist has agreed that my Prograf level can be kept at around 5 or 6, but he doesn't want it any lower than that. If for some reason that doesn't help my kidney function, then they will have to think about switching my Prograf to another anti-rejection medication. I see my lung doc next Thursday, so they will do labs then and look at my kidney function and my Prograf level.

For all you Twilighters out there, I'm sure you know the movie comes out at 12:01 tonight. Casey and several of her friends are having a Twilight party tonight (yeah, another one) and going to the store at midnight. We had it pre-ordered from Amazon and it will be here Monday. I didn't go to the theater to see it because of my hearing loss, so I am very eager to see it at home with closed captioning. :)

Jason is feeling better, but still having a lot of dizziness when he stands. He's getting rehydrated though.

Thanks again for ALL of your many thoughts and prayers. You guys are the best!! I hope all of you have a wonderful, sunshiny weekend!!

Awaiting results...

That was absolutely the quickest hospital stay I've ever had! My creatinine was the same, so because it hadn't decreased, they went ahead and did a biopsy yesterday. Ok, not to be a wimp, but I REALLY didn't like having that biopsy done. Having gone through tons and tons of medical procedures, I wasn't at all nervous going in there, but when they actually started talking about sticking that long needle into my brand new kidney, I got a little anxious. It was a little painful, but the worst part was the clicking of the biopsy needle. Those of you who have had a biopsy know what I'm talking about. Even though I knew it was getting ready to happen, I still jumped about a foot off the table... haha! Then, the doc said, "Oh, we need to take one more biopsy just to be on the safe side". And here I thought everything was over and done with...

I had to lay on my back for 6 hours after the biopsy, even having to use the dreaded bedpan. Ughh! On the (very) bright side, my nephrologist let me go this morning, even though the biopsy results weren't back. Most of the biopsy results will be back tonight, but he thinks it's most likely going to be toxicity from my medication, so it's nothing that I would need to be in the hospital for. If by some small chance it is rejection that requires IV steroids, they will just have me come back to the hospital for a few days.

Jason didn't go with me. He was home with gastroenteritis (a stomach virus in case you don't know what that is). He is feeling better, but still has some nausea and well... you know the other part that comes with it. As Jason puts it, "One end has been in full reverse, and the other end has been in hyper-overdrive." Poor thing. I'm hoping I don't get it. We have some major anti-viral, anti-bacterial, anti-basically-everything wipes that we swiped from the hospital awhile back, so I'm going to go over every surface in the house with them that Jason has touched. Just some trivia for you... a friend of mine took a microbiology class and they found that Clorox/Lysol wipes don't kill the bugs, so they are a waste of money. I don't bother with those since she told me that... hence the swiping of these other ones. :)

I have soooo missed everyone's blogs. I will try to catch up on them later. I took my computer to the hospital, but left it in the car since I didn't think I'd be there too long. I hope all of you are doing well!