For once I allowed CF to take over, NEVER AGAIN!

I came home from the hospital Wednesday afternoon. It was a nice and quick 3 night/2 day stay! Enough time to get the picc line in, get my meds straight, and to get me pumped to get my health back on track! I am on home IV and oral antibiotics for 3 weeks and then I will follow up with Dr. K to see if there was any improvement in my PFTs. They are also going to see how the whole Diabetes thing is going.

So let me tell you about my scare this past summer. Classes ended and it was time for my Intro to Hospital Pharmacy rotation. I was pretty excited b/c ever since I was 16 years old I have only worked retail pharmacy and I wanted to see what else was out there. I completed my required rotation and enjoyed it so much that they hired me on as a pharmacy intern. So at this point I was working both at the hospital full time and part time at CVS. I wasn't allowing myself time to rest, exercise, or even eat like I should. I was putting my health "in the back seat" instead of making it my number one priority. BOY that was a huge mistake! I began to loose the weight that I had managed to put on during the previous 4 months. I went from 121 to 110 within 2 weeks. I then developed this horrible productive cough that just wouldn't stop. Much worse than my regular "cf cough." Have you ever heard those 80 year old smokers that sound like they are going to hock up something the size of a softball while they are coughing? Yea well I sounded even worse than that! I knew then that it was only going to get worse until I got some IV antibiotics in my system or as us CFers call it, a "tune up." I figured I better get on into the hospital if I could get my insurance to go through because I was supposed to be in one of my friend's wedding in Charleston, SC in a few weeks.

About that time I received some wonderful news that my husband would be coming home for his 2 week leave from Iraq and that he would arrive on our 1 year wedding anniversary! Needless to say I was almost as happy as the day I married him! So I continued to push myself b/c I would be damned if I was going to spend any of Brian's time at home in the hospital. So I called Dr. K and asked him to call in a couple of what I like to call my "miracle drugs" to see if they would get me through Brian's visit and the wedding that I was going to be in. Against his better judgement he phoned in Cipro and Prednisone but warning me that if I felt the least bit worse, to call him immediately.

Well the day came and my husband was finally here. I was overwhelmed with excitement to see him but he knew something was wrong. As the days went on I continued to get worse and worse. The shortness of breath became almost unbearable and the coughing continued to increase to the point that I was coughing up blood and pieces of lung tissue. But me being the stubborn idiot that I tend to be, insisted that we still head to Myrtle Beach to spend a few days. If you know me at all, you know that I absolutely love the beach and I could lay out on the beach until the tide comes in and washes the sand away. Or swim in the ocean until my fingers and toes are as wrinkled as they can be. But this time all my body would allow me to do was sit on the balcony and watch the waves crash from the second floor. I could barely walk from the bathroom to the bedroom without stopping to catch my breath. So I knew there was no use in trying to walk downstairs to the beach. I remember looking at Brian with tears in my eyes apologizing over and over for being so sick. I couldn't stand the fact that I had let "this STUPID disease" take over my body! I mean my husband and I had been away from each other pretty much 7 months and of those 7 months he had been fighting for our country 4 of those months. He deserved a wonderful time at home doing whatever it was he wanted to do. He didn't deserve this! He shouldn't have to spend his whole 2 weeks taking care of his sick wife. I became overly frustrated and cursed my disease in every imaginable way. I pretty much threw myself a pity party but I didn't invite anyone. And being the most wonderful husband in the world he told me time and time again that he was doing exactly what he wanted to be doing, and that was spending time with me. He always had a smile on his face and told me every chance he could that he loved me more than anything in the world and he would do anything and everything for me until the day he died. And I knew he meant every word of it, but in the back of my mind it was still eating away at me that I was keeping us from doing so much. We couldn't go for walks on the beach, we couldn't go ride the go-carts in south myrtle, we couldn't walk around the mall, we couldn't even go to the movies b/c the walk from the parking lot was just too far.

Then the day came that I had to take him back to the airport. With tears streaming down my face I watched him walk into the terminal, praying that he wouldn't turn around and see the pain in my eyes. I was scared to death of losing him and I was scared to death of this disease that may shorten our time together on this earth. What if this was the last time I would ever see him? Yes I know that was a little dramatic, but when your husband goes off to war you tend to think the extreme could happen and in my opinion you are entitled to be a little "debbie downer." But I kept telling myself that God was going to look after him because if there ever was a man that deserved a guardian angel, it was indeed my husband.

I left the airport and headed home. My best friend Sara and her husband were coming to pick me up on their way to Charleston so I needed to make sure I had everything packed up for the wedding. Mom begged me over and over to call my friend and tell her that I just couldn't make it to the wedding because I needed to go to the hospital. But I just couldn't do that to her. It was her wedding day, and even if I had to ride in a wheelchair to the alter, I wanted to be there for her.

So I finally made it into the shower and over the past few days showers had become the hardest thing for my lungs to endure. I don't know what it was but it would take everything I had to wash my hair. I learned later that anyone with low oxygen saturation finds it almost impossible to lift their hands above their head which is the reason showering and drying my hair had become so difficult. Well anyways, I went to rinse my hair out and I ended up passing out and hitting my head against the tile wall. When I came to, I called for mom to help. At this point she was beyond furious that I still insisted to go to this wedding so she grabbed my phone and said, "I'm calling her!" At this point I am crying my eyes out and I begged and pleaded with her not to call. She finally said, well if I take your temperature right now and you have a fever, we are going to the hospital! So she took my temperature and it was 102.5. And without allowing me to say anything she grabbed my phone and called the soon to be bride to tell her the news. Not only had I messed up Brian's time at home but now I had messed up one of my best friends weddings. GREAT, WAY TO GO CF! PERFECT TIMING!

Anyways mom called the CF clinic and within the next 24 hours I was admitted into the hospital. My oxygen saturation was in the upper 70s (normal is 96-100). My PFTs were in the low 20s and since I can remember they had always been in upper 70s and 80s. They immediately put me on 4 liters of oxygen and began running all kinds of tests. Later they told me that I had pneumonia in both lungs and that it had become so severe that some of my lung tissue was permanently damaged and for the first time in my life I heard the words, "Lung Transplant." I guess I always thought I was invincible and I would beat the odds of CF without ever getting a transplant. They went on to tell me that I needed to start considering it for the future because my lungs could not take many more of these episodes, and something needed to be done before there was any other organ involvement. My mom and I were both in complete shock. I mean in the back of our minds we knew it was inevitable that I would need one but to hear the words actually come out of a physicians mouth sounded like nails on a chalkboard. We just kind of looked at each other knowing that the other one was just as scared. Not knowing what to say, I just looked at the physician and knodded my head. I mean really, what do you say at a moment like this? Do you say, "Ok doc, thank you for scaring the $&@* out of me," or "thank you doc for ruining my day." I mean really? I know he was only doing his job but I still wish my regular physician had of been the one to bring it up or that the physician had of eased us into the conversation instead of "you need a transplant before your other organs go to crap." haha No he didn't say it in those exact words, but he might as well have.

Anyways after a few days on IV antibiotics (Cefepime and Tobraymcin) they evaluated me for home oxygen use. I had always been fortunate enough not to need oxygen at home or as CFers call it, "being put on a leash." After a quick 6 lap walk with the Physical Therapist my stats dropped well into the lower 80s, upper 70s and my heart rate maxed at 170. So needless to say I was sent home on oxygen.

I ended up spending over a week in the hospital because it was taking so long for the antibiotics to work their magic since I had let this infection get out of control. When I was discharged I was sent home on both IV antibiotics for an additional 2 weeks. I also had a determination that I had never had before to beat the odds of CF and show it that I WAS THE BOSS! Screw a lung transplant, I was going to hang on to these lungs for as long as I possibly could. So everyday when I would get home from class I would put on my oxygen and exercise until tears rolled down my cheeks. And for the first time since I had entered pharmacy school, I made it the entire semester without getting sick. I barely even coughed which was amazing.
(Not only does my coughing disturb everyone in the class, but do you know how aggravating it is to hold in a cough when you are trying to listen to a professor. And the longer you hold it in the worse it gets, to the point that you explode and have the leave the classroom while people stare at you? Even heard a guy whisper one day as I was walking out, "go smoke another one." I mean that honestly hurt when I heard that! Was that really necessary?)

It wasn't until after exams that another lung infection decided to hang its weary head. But this time I decided not to be stubborn and go ahead and head on in for my 40,000 mile tune up. So here I am, home on IVs. My lungs are already feeling much better and if I could just get the weight up and this diabetes under control I hope to be good for another semester! I'm really looking forward to this semester for many reasons. For one, my husband will be home in a month and also because this is my last semester of class!!

I have faith that God is keeping an eye on me and I am going to make it through another semester with his help! And I can't say it enough, THANK YOU FOR ALL OF YOUR PRAYERS AND SWEET MESSAGES! I know I may seem down at times but I know that God has a plan for me and I intend on sticking around for a long time! I couldn't do it without him, my husband, my family, and my friends! All of you are amazing and I love ya'll so very much!