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!!!!

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Random pics

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

Oscar Fashion 2010

You might be wondering how someone who dresses in hoodies, jeans and Chucks on a daily basis has any right at all critiquing Hollywood's top celebs as they walk down the red carpet on Oscar night... BUT... I do anyway! :)

The Oscars were full of glamour and elegance this year (even though two of the biggest stars in Hollywood were disappointingly absent.. Brad and Angelina of course). By far, the strapless look dominated the red carpet. SO MUCH SO, that by the end of the red carpet E! show, I was begging for an off the shoulder, one shoulder, spaghetti strap dress on anyone!!! Even though this Academy Awards had its fair share of no no's, overall, I thought it was pretty tame compared to previous years. I really don't think many "best" or "worst" dresses of all times are going to come from this year's Oscars.

As you all know from my previous posts reviewing Golden Globe fashion and Oscar fashion, I steer clear of other reviews before writing mine. I also do my reviews based on how the celebs look onscreen and online in photos. I have seen that many times I will like how they appeared onscreen, but not be able to find a picture of them that does the same justice. Another thing that I try and do is take in the celebrities overall look/appearance, instead of just basing my "best dressed" and "worst dressed" on the dress itself. I believe makeup, accessories, and hairstyles can make or break an outfit!

That being said, I give you my best dressed of the night:



This was a total shock to me, I must admit! Given Sandra's sloppy purple paper maché dress at the Golden Globes this year, I wasn't expecting much out of her. She totally surprised me with her elegance and beauty! This dress, her shiny hair, her makeup (including the bright, pink lipstick), and her accessories were all perfect. She was the epitome of Oscar beauty thru and thru!

This leads me to worst dressed:



Do you remember my Golden Globe review of Diane Kruger? I think it went something like this... "she is always a nightmare on the red carpet! You would think being the girlfriend of 'Fringe' hottie, Joshua Jackson, she would dress better". Well, something like that. Although I didn't expect her to look good (she totally needs to fire her stylist), I WAS shocked to see just how awful she really looked. She always has such severe hair at these awards shows, and last night was no exception. I would like to see her in some loose curls, and a dress to flatter her amazing figure. I know all of you have said it... "If I had THEIR money and fame, I'd wear something better than that!" Well, that was exactly what I was saying when I saw her last night.

You can follow along here or here to see pictures of each celebrity from last night's big show.

Cameron Diaz - Amazing, elegant, glamorous, stunning! Could I be anymore bold about my opinion of her? She must have had the same stylist as Sandra is all I can say. The sparkly gold, metallic number she wore was so flattering to her tall frame. Her cherry red lips and side-swept hair only added to her look and made her my 2nd best dressed of the night.

Miley Cyrus - I admit. I'm a Miley fan. BUT. I also admit that she may have ruined everything I ever liked about her by showing up at the biggest awards show of the year looking like she did last night. Her corset-like gown was horrendous! I am not sure if her purpose was to look way beyond her young teenage years, but there was nothing flattering about this gown. Her updo was nice, but I couldn't get passed her slumped posture to really notice it until I later saw a still photo of her. First of all, she needs to start doing yoga to improve her "country bumpkin" posture, and then she needs to find a stylist that will dress her in age appropriate clothing. She can, however, keep her hairstylist.

Faith Hill - I really liked this dress for the most part. It was black, but not boring! The lace on the bodice and the skirt really added to this and gave it just enough personality. I don't really like the pictures I've seen of her, but onscreen, she looked much better. I loved her loose updo and her large black earrings. I do think the shiny black bra underneath the gown could have been toned down a bit, but overall, it was a good look.

Penelope Cruz - Usually a favorite of mine. I won't say I hated her dress last night, but its definitely not going to be memorable. I didn't like the neckline at all. It reminds me of a "child gone wild with the scissors" kind of look. The rest of the dress looked like a bunch of gathered material. The lines of the dress didn't flatter her at all, however, the color was a beautiful deep scarlet red. I do think the designer had her skin tone and hair color in mind choosing the color of this dress, but they went horribly wrong with the sewing machine later on.

Zoe Saldana - Ok, so she might get worst dressed on many people's lists. Because she looked beautiful from the waist up (including her make up and beautiful updo), I cannot call her worst dressed. Because she looks like a dyed purple poodle from the waist down, many just might call her that.

Jennifer Lopez - Leave it to J Lo to go bold! This iridescent pink dress was definitely that! I think it's going to be one of those you either love or hate. I loved it! The unique neckline and ruffly skirt, along with the shimmery material looked amazing on her. I also loved her simple updo and simple accessories. She has really gotten in shape, and this dress showed it!

Meryl Streep - Is being 60-something an excuse for looking matronly? I guess it is, but I wasn't that "into" this dress. I think because of her age and skin tone, she needs to stay away from white. I also think the plunging neckline would have looked much better without the long sleeves and thick waistline. Her updo was also too messy in my opinion. All I can really say about her is... eh!

Vera Farmiga - Although the color of her dress was brilliant, she looks like she was stuffed into a genetically engineered flower. I loved her hair and makeup, but no one can get passed the horribly accordion-like ruffles to notice.

Gabourey Sidibe - I'm trying to like it. I do like the fact that someone chose an off the shoulder gown. I do like the way this dress hangs on her larger frame. I do like the color. What I don't like is the flower applique across the bodice of this dress. I think it ruins the entire look. I am also not sold on the hairstyle.

Anna Kendrick - This girl needs color! I've not hated her look for the Golden Globes or last night at the Oscars, but I'm not jumping up and down loving it either. The off the shoulder, blush gown fits her nicely, shows just enough leg, and has just the right amount of embellishments, but the color makes her blend into the background. Cute chunky heels though!

Charlize Theron - What's up with this boob-grabbing dress? She is usually a vision of elegance!!! She was not on her game last night. This hideous pink satin dress looked like it grew arms and reached around to... well you get my point. Shiny gowns like this just do not photograph well and tend to have the wrinkled look after awhile. I'm even disappointed in her hair and make up last night. Boo Charlize!

Demi Moore - OK, off topic here... when did she lose so much weight? Her tiny, tiny figure stunned me last night. Anyway... I loved her gown. Although it definitely didn't stand out in the way of color, it fit her perfectly, went nicely with her skin tone, and had beautiful lines! Her hair was perfect too, and I loved her chunky bracelets. She truly looks 25 and not the "close to 50" that she really is. Where was Ashton by the way?

Sarah Jessica Parker - My 2nd choice for worst dress. What was she thinking? I mean really!!! She doesn't have the, ummm, facial features to pull off such a hairstyle, but then again, even someone with say.. Zoe Saldana's petite facial features couldn't pull off this hideous updo. And though I think she probably has one of, if not THE, hottest bods in Hollywood, she sure chose not to show it off last night. With a dress resembling an embellished pillow case, make up resembling a harlot, skin looking WAY too tanned, and an updo with WAY too much poof, she is definitely not going down in history for this Oscar night. I did like her bracelets, not that anyone noticed.

Kristen Stewart - Why does she always look so uncomfortable? Does she really hate the spotlight that much? I wasn't impressed with her at all. She looked like she had on her mother's dress. It wasn't flattering in anyway! The color was boring, her hair was boring, and I'm wondering why she couldn't have at least worn earrings! Ughh!

Kate Winslet - She's usually too matronly for me. She's only in her late 30's (?), but chooses gowns that make her look 50+. Last night I believe she did much better in wearing an age appropriate gown. I thought it was elegant and I was happy to see at least one celeb wear a necklace with their strapless number. I don't think this dress will be that memorable, but I still think she looked beautiful. I liked her lose, wavy hair too!

Amanda Seyfried - Ewwwwwwwwww! Space alien alert!!! This silver, ill-fitting dress was a horrible choice for such a young hottie! I think she was trying to go for Hollywood glamour here, but she failed miserably. Her severe hair and space alien dress make her look way beyond her young years.

Molly Ringwald - Stunning! Not only has she gotten back into terrific shape since giving birth to twins last year, but she was a picture of perfection with her dress and hairstyle last night. It was awesome to see my Hollywood favorites from the 80's last night in a tribute to John Hughes, and it was even more awesome to see how great they all looked! Molly's red hair couldn't have gone better with her purple dress, and I loved the geometric clasp at her waist and matching bracelet.

Sigourney Weaver - I've seen better! I do like her in red, and I do like the flattering lines of this one shoulder dress. What I don't like is the black ribbon chosen to cinch her waist. It seemed so out of place to me. I think a belt in the same color as the dress would have been much more flattering. Her hairstyle was just ok.

Nicole Richie - I'm not liking this metallic angel-winged number. She is much too cute and petite to be wearing such a dress. Her severe updo did nothing for her either. I'm still wondering what she was even doing there in the first place, and really surprised that she would choose this dress for her one chance at being a real celebrity!

Rachel McAdams - This strapless style has been overdone, the colors were a mixture of pastel finger paintings, I don't like her blonde, and her make up was way too peachy! Nothing else to really say!

Carey Mulligan - When I saw her onscreen on the red carpet, I thought she looked great! When I saw her walk up and present, I thought she looked horrible. I guess this boils down to a beautiful top half of her gown (with odd, but awesome embellishments), and a messy bottom half that couldn't decide whether it wanted to be a long or a short gown. I did like her awesome black shoes!

Maggie Gyllenhaal - She's looking radiant this year. I really liked this dress on her. It was a very simple sleeveless design, but was made brilliant by the colors! It was a mixture of blue, black and a hint of orange all brushed on like an oil painting. She kept her hairstyle and accessories simple, so we could truly enjoy the dress!

Elizabeth Banks - WOW! I thought this dress was amazing. The gray color is nothing special until you add the ruffles and beaded seams. It turns something that could have been just ok into something that rocked the red carpet. Elizabeth's updo and headband were also stunners! She gets an A+++ from me!

Mariah Carey - Thank you, thank you Mariah for covering up the parts that need covered and for toning it down a bit! She actually looked elegant last night, and I know for Mariah, that word is like a foreign language. Some may argue that this dress was too matronly for her, but I thought it was just sexy enough with the off the shoulder neckline, and "slightly high" slit!

Mo'Nique - I loved her entire look! She really knows how to show off that body, and do it justice! I'm digging the neckline, the color and the lines across her hips. I also love the flower accent in her hair. She just really rocked it last night!

Tina Fey- The pictures I'm seeing of her last night are not flattering at all. I'm going to base my review on the way she looked onscreen. I think its one of her best looks. I liked the animal-like-print, one shoulder gown. I thought she looked elegant and age appropriate. I also liked her hairstyle and accessories.

I would, once again, love to hear your opinions. Feel free to agree, disagree, offer your own reviews, etc.

My experience with rATG

I'm writing this blog post for two reasons. One, of course, is to update my friends and family, who are not on facebook, about my health. Two, to put my experience with rATG (Thymoglobulin, rabbit Anti-thymocyte Globulin) "out there in the cyber world" for those looking for other patient experiences with the drug. I found, when researching this myself, that there wasn't a whole lot out there.

As most of you know, my lung transplant pulmonologist believes from my recent drop in lung function and my recent xrays that I'm experiencing chronic rejection of my lungs. This is where scar tissue develops in the small airways of the transplanted lungs as a result of white blood cells (lymphocytes) attacking the area. My lungs are not a part of me, and therefore are being attacked by my own lymphocytes.

rATG is a medication that is used to treat chronic rejection. It kills the body's white blood cells in hopes of stopping the attack on the transplanted organs. So, what are the side effects of rATG? Normal reactions or short-term side effects to rATG are flu-like symptoms, like fever/chills, nausea, headache, drop in blood pressure, and increased risk of bleeding (infection and lymphoma can be long-term side effects, so I have to be sure to report any night sweats that might come weeks or months after taking this).

Well I took the short-term side effects a little too far. Even after being given IV Benadryl, IV Zofran, IV solumedrol and oral Tylenol, I had a full inflammatory response to the medication. Thirty minutes into my first infusion, I had complete and total full-body pain!!! I can honestly say that it was the worst pain I have ever experienced. The medication was stopped, and I was given IV Dilaudid and more IV Benadryl. Because this wasn't considered an allergy to rATG, I was once again started on rATG the next day after being pre-medicated with the usual meds plus IV Dilaudid. Other than some pain and itching, I did fine with the next 3 doses.

As a precaution, I am on IV Ceftazadime (antibiotic), oral Cipro (antibiotic), IV Gangcyclovir (anti-viral), and inhaled (via sinus nebulizer) Colistin (antibiotic), to try and prevent any infection since my immune system is so depressed right now. I will be on these medications for 3 weeks. Thankfully, I was able to go home after my last dose of rATG. The hospital is the worst place to be when you are immunocompromised and at risk of infection.

I will go back to Duke in 4 weeks to see my transplant pulmonologist. We are hoping that my lung function will have improved at that point. If not, my doctor will most likely give me Campath, which is similar to rATG, but much stronger and can wipe your immune system out for up to 12 months. We are hoping it doesn't get to that point. I do know of several other recipients who's lung function responded to the rATG, and I'm hoping I am one of them. :)

So, that's a rundown of my week at Duke. I am so thankful for my wonderful doctors and nurses!!! I have been home now for almost a week. I have slept most of the week away, but am feeling much better! I am definitely staying away from crowds for at least another couple of weeks.

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 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....