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. :)