Thankful

"Be thankful for what you have; you'll end up having more. If you concentrate on what you don't have, you will never, ever have enough." ~Oprah Winfrey

Monday, November 14th, I was released from the hospital. My FEV1 was sitting stable at 48% and I was grateful to see those results after my body had been turned upside down for months. I got the go-ahead from the doctors to leave and finish the rest of the intravenous antibiotics at home. Hunter rescued me from the hospital; he picked me up and I was relieved to be going home. As I looked into his warm, loving eyes, his hand in mine was all I needed during the 3-hour car ride home.

My last day of intravenous antibiotics was November 18th. I pulled the 20-gauge X 3/4 inch needle out of my port and I was a free woman, at last! Typically, I would use a 20 gauge X 1 inch port needle, but the hospital had recently used a shorter needle on me, and it worked perfectly. I will have to access my port every 30 days when not being used, in order to maintain and keep the port functional. I'm going to have to take a needle and push it into my chest, and I'm hoping for a smooth experience. It's amazing what a person can endure when the future is in full focus.

I have learned that life moves in a circle. There are moments of greatness and moments that make you feel rough around the edges. The highs and lows have taught me so much about life, and I've learned to really appreciate every second. I was thankful to have an amazing Thanksgiving with my mom, Hunter and his family. I was basking in the day, thankful for those little moments of greatness.

My honey and I on Thanksgiving Day

Delicious! I made a spaghetti squash and zucchini creation on the bottom right!

Excitement

"Get excited and enthusiastic about your own dream. This excitement is like a forest fire - you can smell it, taste it, and see it from a mile away." ~Denis Waitley

It's the final countdown...do do do do...do do do do doooo....

I'm excited! I have a Pulmonary Function Test (PFT) tomorrow morning. I have been persistent, diligent, determined, and working hard. My regimen in the hospital has included around the clock nebulizers, chest physiotherapy, intravenous antibiotics, as well as 5 hours of sleep every night (due to my vigorous respiratory schedule). Rarely, do I have any time to rest during my stay at the hospital and I am looking forward to peaceful sleep without any disturbances when I get home. I have been experiencing Respiratory Boot Camp here at the hospital and no boogers will get out alive! ;)

In September when I started I.V. therapy my FEV1 was 57%. While I was on intravenous antibiotics my FEV1 fluctuated down to 45%. Then, to 29% FEV1 (lung transplant list status) because I was not getting the proper treatment in Orlando. Now, that I have been seeing the doctor here at the Miami hospital, I'm feeling amazing! On November 4th, my intravenous antibiotics were changed to Zosyn (3.375 gram) every 6 hours and Tobramycin (470 mg) every 24 hours. This final antibiotic duo ended up doing the trick! I am so happy! I feel like grabbing all the nurses and jumping up and down with them in excitement! I feel like skipping down the halls. To be able to breathe without the feeling of an elephant sitting on my chest is blissful! I am so grateful for how I am feeling at this moment. My doctor informed me that the game plan for tomorrow is PFT's, a lung x-ray, and if all looks great, then home sweet home! I am excited to see what tomorrow brings! Wish me luck! Yayyyyy!

In the video below I'm showing off my new handy dandy vest wrap and getting prepared for tomorrow! :)

Hanging On

"When you reach the end of your rope, tie a knot in it and hang on." ~Thomas Jefferson

A lot has happened since my last post, and I have no idea where to start. It's as though I was a hostage in the months of September and October, and I've just wanted to rewind time and go back to August. Life isn't like that though, there is no going back...just forward.

In September, when my intravenous antibiotics were switched to Merropenem and Colistin, I started to feel different. My O2 had dropped from a 98% to 93% pulse oxygen rate since the bronchoscopy and port was placed, but I had thought it would be temporary and that it would come back if I just gave my body some time to fight infection and recover. As days went by, I was experiencing high tachycardia (increased heart rate) and my O2 started dropping to the 80's on room air. I wasn't able to breath on my own without the help of oxygen. My doctor ordered a CT scan of my lungs with contrast. When the contrast was pumped into my heart, I had my eyes closed. I saw an orange flash and I felt a warm sensation in my chest. My O2 dropped to 70 and I was rushed to the E.R. I was so glad to have my friend Paula there because this was not the norm for me and I was scared.

I knew that the reason why my oxygen dropped to 70% was from the reaction to the contrast. But what was causing my O2 to be in the 80's before that was the big question. A part of me wanted to put all the blame on the port because of the fact that it was a new, unfamiliar, foreign object in my body. I wondered if my body was rejecting it and if my sudden symptoms could easily be fixed by taking the thing out. Then, I wondered if it could be a reaction to the toxic intravenous medications that were being pumped into my heart. And my final guess was simply Cystic Fibrosis, the culprit that I fight so hard every day to just keep jailed up.

I know that when living with Cystic Fibrosis, life can change in an instant. I'm not oblivious to what the disease can do. I have heard stories of those who have lost their battle with Cystic Fibrosis. The cause of death in a Cystic Fibrosis patient is usually respiratory tract infections, respiratory distress, transplant rejection, or complications from Cystic Fibrosis. Though, I want my story to be different - I want to somehow change my story. That is why I fight so hard everyday to defeat Cystic Fibrosis, the disease that tries to rob me, hold me back, and steal everything away.



Dr. Layish (my Orlando doctor) did not have any answers. After 3 weeks of intravenous antibiotics, the Merrepenem seemed like the culprit and I was taken off of the antibiotics. My O2 was sitting stable at 92% in the hospital, so I got the go-ahead to be released. I was off intravenous antibiotics for a week to try to see if that would make everything better. I know it might sound crazy, but I decided to go to New York with my mom for four days. It was a mother/daughter vacation that we had always wanted to go on. I did not want my Cystic Fibrosis to steal that away from me, and I thought to myself, as they say on broadway: the show must go on! It was an amazing four days with my mom. I made sure to have oxygen there when I arrived so that if my symptoms were to occur again, I would have backup. And I made sure to sleep with the oxygen at night as well. On the airplane ride back, my lips and fingernails suddenly turned blue, which had never happened to me before. The stewardess grabbed a tank of oxygen to help me breathe. I was scared. My body was giving me clues that something was wrong.

My oxygen was constantly fluctuating. One moment I would be fine at 92%, and the next, I would be needing oxygen to breathe. My doctor ordered a bag pack and small oxygen tanks for me to carry with me during the day. He did not seem to have any answers. In fact, he actually asked ME what I wanted HIM to do. I was in shock! Isn't he supposed to be the doctor? Dr. Layish always sends me to an infectious disease doctor when it is time for I.V.'s, and even though I am not contagious, he feels that she is the best person to decide which intravenous medications should be used to treat my infections. Usually, a good Cystic Fibrosis doctor knows everything there is to know about Cystic Fibrosis, especially when it comes to treating infections with intravenous antibiotics. This goes to show that he truly doesn't have a clue. Dr. Curbelo, my infectious disease doctor, decided more intravenous antibiotics were necessary, and that the cause of all this commotion was not the port, but rather my Cystic Fibrosis. I started back on intravenous antibiotics on October 11th.

Colistin (every 12 hrs) and Cefepime (every 8 hrs)...only to find out one week later that I wasn't getting any better, due to the fact that I was resistant to the Cefepime.
My antibiotics were then changed to Colistin (every 12 hours) and Azactam (every 8 hrs), on October 17th, and I have remained on these drugs since then.

I have finally decided that it is time for a change. Enough is enough. Time for a new CF doctor. My best friend, Christina, is amazing! She drove me down to Palm Beach to help me find answers. She was my old college roommate and has been through it all with me. I have heard many great things about Dr. Salathe, and I decided after we met that I wanted him to be my new doctor. When I lived in Miami last year, Dr. Light was my Cystic Fibrosis doctor. When I told him that I was moving back to Orlando, he informed me that he was retiring and that I could always drive to Palm Beach to see Dr. Salathe, but I felt that the drive was just too far. For the sake of convenience, I told myself that my old Orlando doctor would do fine, but who am I kidding? Cystic Fibrosis doctors in Miami are simply the best in Florida. And if I want to get the best treatment, I need to make the 3-hour drive for it. I think it will be worth it. Dr. Salathe wants to start from scratch and reevaluate my overall condition. Tomorrow morning, Hunter is taking me to the hospital in Miami. Dr. Salathe's game plan for me includes vigorous chest physiotherapy, prolonged intravenous antibiotics, around the clock inhaled medications, and generally kicking some CF butt!

I'm aware that I have holes in my lungs from the disease, and mucus galore blocking my airways, but it's like I said - I want my story to be different. I want a doctor that will also be my cheerleader. I don't want to be a statistic. I want someone that will fight as hard as me to keep me going. At times, I think my mind has gotten me this far. The constant push to survive; the will to beat the odds. September and October might have been stolen from me, but I want to enjoy my November and, more importantly, my 27th birthday in December.

Beauty

“I don’t like standard beauty – there is no beauty without strangeness.” ~Karl Lagerfeld

As a makeup artist, I've learned that we are our biggest critics when it comes to beauty, but, in my opinion anyway, true beauty can be found in a person's attitude. Scars and wrinkles should not be viewed as flaws, but rather as beauty marks or stories that make each person unique. Each marking on my body illustrates a different chapter of my life. I would not be where I am today without my scars, freckles, "lines of intelligence" (as Bobbi Brown would say), or anything else you may find on my body. My port is my newest beauty mark to add to the collection, and it is healing nicely.

My beautiful booboo is healing. :)

Patience

"Slow down, you crazy child and take the phone off the hook and disappear for awhile it's all right, you can afford to lose a day or two
When will you realize, Vienna waits for you?" ~Billy Joel

I'm not throwing up gang signs lol, I'm flashing my purple CF awareness ribbon with my fun, purple nails :)

My life is on pause. I've become quite familiar with a little word that we call "patience." As much as I want to press play or maybe even fast forward, I know that I need to take a moment to gather and piece myself together right now. Rushing forward may not always bring the best outcome.

The skin around my port has healed nicely this past week. My neck muscle, on the side where my port was placed, is feeling more sore than my chest. I think it's due to the fact that I tense up when I cough because I don't want to do anything that could disrupt the healing of my port area. A brand new needle was placed in my port, along with a brand new IV 3000 dressing to keep the I.V. line and wound sealed. My doctor decided to stop intravenous Tobramycin and put me on Colistimethate 150 MG (every 12 hours/BID) intravenously for two more weeks instead. So the new dynamic duo is Colistimethate and Meropenem. Intravenous Tobramycin can cause loss of hearing and balance problems and should not be used for long periods of time anyway. Also, Dr. Shah believed that Colistimethate could make my lungs feel better and that my Tobramycin treatment, if prolonged, might do me more harm than good. In my personal experience, the first combo of intravenous drugs rarely does the trick, and the game plan has to then be tweaked in order to give me the best possible results.

I am very fortunate to have doctors that allow me to do my intravenous antibiotics at home. The best therapy that I could ever get is being with the love of my life, Hunter, and my fuzzy son, Aiden, when I'm not feeling my best. I am so grateful to have an amazing support squadron as well. My mom, Hunter, Hunter's parents, and my friends are so helpful during my time of I.V. therapy, and have often rescued me when I needed a helping hand. Keep in mind, they are the reason that I am able to get well, in the comfort of my own home, rather than in a strange hospital room. I am more on-edge in a hospital setting and I hate feeling stressed when I'm trying to recover. Usually, my doctors have to twist my arm to get me into the hospital. I have done intravenous antibiotics so many times throughout my life now, that I am perfectly capable of administering them on my own - therefore, I prefer to do so. I take exceptional care of myself and I have a hard time trusting others, even nurses and doctors, to do the same. It's not that I doubt the intelligence or capability of these medical professionals, but rather I find it difficult to allow others to completely take the wheel when my health is in the passenger seat. However, I do have a home nurse that comes once a week to draw blood, change the dressing, and put a new needle in the port. Now that I have a port, my new goal is to eventually be able to access my port on my own.

Everyone heals differently and prefers a certain setting in which to heal. My place to recover, recuperate, and piece myself together will always be my home. Home is where I find my patience. Zen monks believe, "if you don't have patience, if you can't endure, well, don't bother, because you won't get very far." I know that I can't force things to happen; healing happens gradually. In the meantime, I'm holding onto patience, waiting to heal, and wanting to breathe easier.

Stepping Stone

"One of the secrets of life is to make stepping stones out of stumbling blocks." ~Jack Penn

*My new beginning, my port*

With Rosh Hashanah right around the corner, I went into the surgery thinking "this is my new beginning." This will be a sweet year for me. I thought to myself, "if I go into the surgery with a positive outlook, instead of being filled with fear, I will have a smooth surgery." Rosh Hashanah is a Jewish holiday which is celebrated at the end of the month, on this particular year. The holiday signifies the start of a new year on the Hebrew calender. I went into surgery yesterday with hope that my port might come to signify the start of healthier chapters in my life. Sometimes, in certain situations, grabbing onto faith makes tough times easier to get through.

Hunter took me to the Winter Park Memorial Hospital, Wednesday morning, at 6:30 am to prep for surgery. 8:00 am was the point of no return, as I took a deep breath and readied myself for the port. Hunter did not leave my side until it was time for the actual surgery. He is the most amazing man. He is my sailboat that keeps me afloat and sturdy in this wavy ocean of life. I was consciously sedated throughout the whole surgery and I kept on hearing voices around me, but I did not know what was going on or feel any pain during the surgery, as a result of the drugs they gave me. The nurses, RTs, and radiologist involved in my surgery made the port placement an overall calming experience for me.

Dr. Mansilla placed the port on my chest (left side). He sewed the port into a pocket of my skin, from the inside, to place the port correctly, and then sutured the port in place so that it would not float. He used dissolving stitches and left the port accessed so that I could start I.V.'s immediately, per my request. My Bronchoscopy results came back and I grew Pseudomonas and a mucoid Pseudomonas strain. The game plan is: Meropenem (1gm vial, every 8 hours) and Tobramycin (40mg vial, once a day) to be administered intravenously via my port for two weeks. Thankfully, Stina (my BCF), gave me advice and helped me to get prepared for the surgery. I am so grateful to my Cysters and Fibros that had shared their port stories with me. Their experiences, some positive and some negative, gave me the knowledge that I needed to go into surgery with confidence that I was making a good decision for myself. Dr. Mansilla decided that the Xcela Power Port, which requires saline and heparin flushes, would be the best port for me. I was glad because that was the port that I had been leaning towards getting as well.

Now, I am so pleased that I got the port. I'm so happy that the surgery went well and that there were no complications. The only thing that hurts is my neck and chest when I cough, but hopefully that pain will subside as the area heals. Tylenol has been my best friend today. I have not really seen the final port result because the area is heavily bandaged, but this Tuesday, I have an appointment to follow-up with Dr. Mansilla, in order to make sure that I am healing well. I hope my purple port is pretty. I have a feeling that it will be. :)

Brass Knuckles

"Give thanks for what you are now, and keep fighting for what you want to be tomorrow." ~Fernanda Miramontes-Landeros

The last time I had intravenous antibiotics was in October of 2010. I'm almost at the one year mark of having no I.V. antibiotics. I try to go a year without needing the I.V. medication. Although, I started to wonder if waiting for the inevitable was really going to help me in the long run. No one has all the answers in the treatment of CF, it's not a black and white disease, it's complicated. I have no regrets in the health decisions I have made in my 26 years of living with Cystic Fibrosis and hopefully my tic-tac-toe decisions will pay off in the long run.

I had a doctors appointment on Tuesday and my PFT's were surprisingly better than my last PFT's! I was feeling a little junky so I expected the numbers to be in the low 40's, however, my FEV1 was 52% pre-RX and then after taking Albuterol via nebulizer my FEV1 was 57% post-RX. I was extremely excited to see those results. I have Asthma along with Cystic Fibrosis so my lungs seem to be happier after a bronchodilator. My x-ray showed a whole different view of my health. My x-ray looked like Casper the Ghost took a bath in my lungs, especially my right lung. A "normal" x-ray shows the lungs in black and the bones in white. This is what my x-ray showed:
The white color that is displayed in my lungs is all mucus. My lungs always have white in the x-ray because Cystic Fibrosis patients are always producing thick mucus in the lungs. When there is an increase in areas or clusters of white parts, I have to be more aggressive and make sure to knock CF and my goodies down a notch with I.V. antibiotics. An increase of white often means exacerbation or infection of the lungs.

I gave my consent to move forward with a bronchoscopy and I decided to show my lungs who's boss! :) I haven't been a fan of getting bronchoscopies because I know that the surgery is invasive. A scope is sent into the lungs to suck up the goodies and saline is also put in the lungs to flush, irrigate, as well as clean the goodies away from the bronchial walls. There are risks of puncturing the lung or the lung collapsing. This was my 2nd bronchoscopy and the surgery was performed on Thursday. I got an I.V. placed in my right hand. Then, I inhaled lidocaine via nebulizer to numb the back of my throat and lungs. I had planned to do the surgery by conscious sedation, but the plan changed because my doctor wanted me to be extra comfy. I was given the Michael Jackson drug, Propofol, through my I.V. and I was sleeping within 2 secs. The drug has an amnesia affect, so I don't remember too much. Hunter and my mom told me that I kept talking really loudly after the surgery, I was telling everyone how great they were, and I even fist bumped my doctor that performed the bronch. lol And I don't even remember talking to my doctor after the surgery.

After surgery, I coughed up blood for the first 2 days and then it went away. It was pinky mucus rather than full blood clots coming up. And I ran 101.4 fever which I was told can happen after a bronchoscopy. After a bronchoscopy the lungs are usually irritated and angry which causes inflammation, bleeding, and tenderness of the chest. I felt as though I had lifted heavy weights. My chest was tender and a little sore, but nothing too painful. I made sure to rest a lot to recoup from surgery.



If you have a weak stomach, don't view the pictures below. The pictures below were taken during my bronchoscopy. My doctor started with a picture of my vocal cords, then took another picture going down my larynx, which continues into my bronchial airways. Fortunately, he was able to get a lot of my everyday mucus up and send the goodies out to the lab to get cultured. I know the day will come where I don't cough, have thick mucus, and can breathe easy. That's my wish.
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*Graphic Pictures Below*

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Tools of the Trade

"If you don't like something change it; if you can't change it, change the way you think about it." ~Mary Engelbreit

If you were to tell me three years ago that I needed to get a port, I would have cried like a little baby. Today, I am actually excited that a port will be on the menu and I'm going to be fist-pumping all the way to surgery. I've decided to name the port Penelope and rock it out with pride! It is time to put on my big-girl panties and get it done!

After years of numerous PICC lines for intravenous antibiotics, my right-side vein that goes to my heart has been scarred. This has led to a narrowing of the vein that leads to the heart, which in turn makes the catheter hard to thread and eventually gets kinked around the armpit area. Also, when it comes to my left side, the main vein that leads to the heart is very small, which makes it difficult for the PICC line team or radiologist to deal with. Basically, no good veins = time for a port.

Also, I have become allergic to a lot of the surgical material used in the prepping of intravenous antibiotics. I am allergic to tegaderm, chloroprep, betadine (under dressing), and surgical sticky tape. The only I.V. dressings that work for me are the I.V. 3000 dressing and Opsite dressing, and then rubbing alcohol to clean the area. I know that PICC lines are already hard for radiologists to do, but to prevent allergic reactions on top of the surgical procedure can become a little much at times. Keep in mind I'm not getting the port for them, but for me. I think the port will reduce the tedium of getting intravenous antibiotics - it simplifies the whole process. All I have to do is access the port when needed and flush once a month when I am not using it. Easy as pie!

I have decided to make the decision to move forward and reach for higher health goals. I'm hoping the port is going to make my life easier and make my lung function better as a result. I've been thinking about my port, not as a negative stepping stone, but as an accomplishment in my CF life that I have come this far.

My port will be used as another tool in my arsenal. After reading and educating myself on ports, I found that I can either get an arm port or a chest port. I'm leaning towards getting a Navilyst Xcela chest port. Almost like a car, I want it to be a long-lasting and reliable addition to my life. I also have an option to get a Groshong port, but I've heard some complications have been seen with blood return. I loved my Groshong PICC lines, but I am thinking I want an open ended catheter for my port instead of the side slits that are displayed in a Groshong type of catheter. I want a port that won't clot, won't cause complications, get infected, or float. Seems like simple requests to me. ;)

This is the Navilyst Xcela chest port that has an open end (which requires Heparin flushes) and I liked the fact that it can be sewn down in the pocket stitch that the radiologist makes. This one is pretty! This port is the one that I'm currently leaning towards getting. :)



And this is the Groshong chest port that does not require Heparin:

And PURPLE! Weeeeeeeeeeeeee!

I'm finally ready for this adventure. :)

Breakfast of Champions

"To succeed in life, you need three things: a wishbone, a backbone and a funnybone." ~Reba McEntire

After fasting from midnight until ten in the morning, the only thing that I could have for breakfast was a bottle of orange liquid that a nurse handed me to drink. The sugar coated mix of glucose vaguely resembled the citrus beverage Orangina in a way, but ten times sweeter. This breakfast of champions concoction was meant to test my glucose tolerance. And so the glucose challenge began....

The reason I was having this test done is because it is common in those with Cystic Fibrosis to develop Cystic Fibrosis Related Diabetes(CFRD). Cystic Fibrosis Related Diabetes is a unique type of diabetes and is not the same as diabetes in people without CF. The two types of diabetes in a non-CF population are Type I diabetes(insulin dependent) and Type II diabetes(known as non-insulin dependent). CFRD has some features of both types of diabetes. I have been more fatigued and my lung function has been low which are common symptoms of Cystic Fibrosis Related Diabetes. I was hoping deep down inside that I wouldn't have to add CFRD to my CF résumé. CFRD develops in CF patients because our pancreas becomes scarred causing the body to not properly produce insulin.


Blood was drawn before as well as after I drank the orange goop. The results came back that my fasting level was 88 and 2 hours after I drank the orange glucose my level was 172. My fasting level was normal which was great to hear and the 2 hours after showed impaired glucose tolerance(borderline diabetic), but was not high enough to declare that I have Cystic Fibrosis Related Diabetes. I was happy to hear those results! I don't mind staying borderline and would hope to remain that way for years to come(my optimistic side coming out). After the blood draws and fasting were done, I immediately ate a plethora of food, and enjoyed each scrumptious bite!

Dakota

"Spread the diaper in the position of the diamond with you at bat. Then fold second base down to home and set the baby on the pitcher's mound. Put first base and third together, bring up home plate and pin the three together. Of course, in case of rain, you gotta call the game and start all over again."~Jimmy Piersal

When your little and the teacher asks you, "what are you going to be when you grow up?", many young girls answer, "I'm going to be a mommy." I, on the other hand, had a different response believing that I was going to be a singer. But, it's funny how we all go from being in a preschool class to eventually growing up on different paths with different life goals.

My friend Danielle is pregnant and about to become a mommy. Danielle and her husband, Brandon, will be having a beautiful baby girl in August. I am so excited for them, I know they will be great parents! Yesterday was the baby shower for her baby, Dakota. Danielle was beautiful and glowing. She had her close friends and family there to celebrate her exciting new venture into mommyhood and we all brought gifts to spoil the baby that is on the way. We played the "guess the baby animal name" game, "guess the measurement of Danielle's tummy" game, and "how many diapers are in the diaper cake" game. All of Dakota's gifts were so tiny and cute. When I first found out that Danielle was pregnant, I was so excited to start shopping for tiny baby items. I found myself getting distracted and making a detour to the baby section every time that I was at a store because everything was just so darn cute! Basically, I had a new addiction, it was called shopping for Danielle and Brandon's unborn baby!

Hunter, Me, Danielle, and Brandon at the Baby Shower:

I guess I'm at that age where many of my friends are getting married or having children. I grew up thinking that is what people do, they get married and have kids. But that is not always the case. I've always been fond of kids, thinking they were really cute, but somewhere down the line I came to a fork in the road and started to ask myself, "is this what I truly want in life?" I remember a doctor telling me that it would be really hard for me to carry a baby. When a baby is growing inside a womb, the baby will start to press on the lungs and other organs making the experience uncomfortable. Also, for a woman with Cystic Fibrosis, I've heard that when the baby pushes on the lungs, it makes it even more difficult to breathe. I already have compromised lungs from the disease and I wouldn't want to put myself at risk by trying to carry a baby for 9 months as well as give birth. I sometimes get uncomfortable when I eat too much, I couldn't imagine having a watermelon inside of me and feeling that I just had to take a poop and couldn't haha.

I know that I can always choose the path of adoption. I believe adoption is a beautiful route to take. If Hunter and I, down the line, ever have the urge to have a child and decide to take that route, we know that adoption is a great option. Hunter has told me that if a baby is going to jeopardize my health, he would pick me over having a baby, hands down. Thankfully, I have an amazing man in my life, that is supportive, and has the same views as me when it comes to a family. For now, we are happy being proud parents to Aiden, our fuzzy border collie. And I love our little family. :)

Just A Number

"Adapt or die. As many times as we've heard it, the lesson doesn't get easier. The problem is we're human. We want more than just to survive. We want love. We want success. We want to be the best that we can be. So, we fight like hell to get those things." ~Grey's Anatomy

When did life become a number game? Age is just a number, weight is just a number, and my pulmonary function test results were just a number today. I've never been that great with math, but in my life where numbers are so important, I put a lot of chips on the number game hoping for the best luck.

Today, was a regular check up day with my CF doctor, Dr. Light. I laid in bed the night before after hours and hours of doing chest physiotherapy and breathing treatments, wondering about my appointment and how it was going to play out. I knew that I had to do a PFT(pulmonary function test) to see the progress of my disease and I've gotten to a point in my life where just thinking about the test makes me a little shaky in the knees. My disease is progressing and I'm aware of the situation. When I go to the doctors, I feel like I am under a microscope as I talk about my medications, health regimen, and daily obstacles with Cystic Fibrosis. By the time I'm done with seeing the nurse, the psychologist, the nutritionist, and doctor plus a resident to examine me, I'm exhausted. At this point, I just want someone to come in and say your perfect, but I know even if I put on make-up and dress up, I still can't hide the fact that my organs are failing on me. My PFT results were 46% FEV1, they had dropped. As I stared down at the results on paper, I couldn't hold back the emotion I was feeling, even though I was telling myself it's okay, it's okay. I allowed myself to release knowing I needed that moment to cry. At that moment my smile was stolen. Why is the number so low? Why can't it be better?

The doctors, Dr. Avacelis and Dr. Light, who were both in the room said, that a number is just a number and it's more important how I feel. So numbers aside, I don't feel super great health wise, but I don't feel crappy enough that it is hospital time either. I just feel like I'm coasting. I feel that people adapt, adaptation is a part of life. Living with Cystic Fibrosis, my body has learned to adapt. I have learned to keep going and keep pushing, regardless of my low lung function. From what I have read and learned throughout the years from reading blogs and talking with other people with Cystic Fibrosis is that even a person going through transplant or chronic rejection after transplant will have the will to adapt, keep on going til there is no more sand in the hourglass, and on the outside you wouldn't even know how hard the person is truly working. It's how the body is made. I explained to the doctors that I'm keeping up with my breathing treatments, chest physiotherapy, I take all my oral medications, and inhalers, my CF digestive issues are good(I eat like a cow), and I have my workout buddy, Aiden(my fuzzy son), who is my outdoor trainer. I'm doing everything that is expected of me. Doctors orders are to keep on doing what I'm doing and increase the exercise. Also, they want to run a glucose tolerance test again to see if I have Cystic Fibrosis related diabetes(CFRD) which is common in Cystic Fibrosis. There was one tweak in my regimen and that is to not do Colistin via nebulizer anymore because that antibiotic does not seem to prevent infection as well as it used to in the past. I will be going back to using Tobramyciin via nebulizer twice a day on my months off of Cayston. We either adapt, fight, or flee.

Bucket List

"If you want your life to be a magnificent story, then begin by realizing that you are the author and everyday you have the opportunity to write a new page." ~Mark Houlahan

I haven't written in awhile and I decided to come here and let me thoughts wander as usual. Since I last wrote, I was able to prevent the infectious fire from spreading in my lungs, avoiding the hospital at all costs. Thankfully, the oral antibiotics did the trick with the help of the magical nebulized Cayston antibiotic. Being that I can not see what is going on inside my lungs, I often use analogies and imagery to paint a picture. When I start becoming more congested with an infection, this causes my airways to tighten, and I become more crackly compared to my regular CF mucus days, I try to jump on it as fast as possible. I almost think of it as a fire inside, if I'm able to catch it early then I can prevent the fast spread, damage, and disaster to come. With my pulmazyme, hypertonic saline solution, and Cayston trying to be the extinguisher. Everyday it's like a constant flame burning in my lungs, the disease being chronic, causing damage over time. Making me realize that time is a very precious thing I have right now.

I have never really sat down and written a bucket list on a piece of paper, but inside my head I have my list of things I want to accomplish in life. I was able to cross out one of the activities on my bucket list recently. I went to PARIS! I had the most amazing time with my fiancee, my best friend Christina, and her fiancee Jake. I loved every moment. It was definitely an adventure for me and my taste buds! I tried so many french dishes, I was open to everything including escargot which I enjoyed. We were able to see the top tourist sites including, The Eiffel Tower, Arc de Triomphe, Notre Dame, shopping on the Champs-Elysees, Sacre Coeur, The Louvre, and we saw the Moulin Rouge. The best part is that my best friend asked me to be her bridesmaid on the very top of the Eiffel Tower! I was shocked, I had no idea she was going to pop the question haha. There were two moments during the trip where I had thought I can't believe I am doing this, as I put one foot in front of the other. I was able to climb to the top of the Notre Dame and the top of the Arc de Triomphe. My lungs aren't in the best shape right now and I'm lacking a normal oxygen level on room air. After hearing that my lungs are damaged due to Cystic Fibrosis a billion times has made me look at climbing a billion stairs as a feat in itself. I definitely spoke some lovely french words on the Notre Dame climb and the Arc de Triomphe climb! Even though I probably looked like Quasimodo when I got to the top, I felt like a superstar. There was an indescribable feeling that came over me, and even though I did not make it known to my fiancee, Christina, or Jake, I was silently dancing inside. Overall, it was an amazing trip with amazing people!

Broader Shoulders

"I ask not for a lighter burden, but for broader shoulders." ~Jewish Proverb

Last Monday, I had a doctors appointment with Dr. Light. My FEV1 was 50%. When he first met me a good five months back, I was at my worst with FEV's in the 40's. This is a good sign that my numbers are higher, but of course not where I ultimately want to be number wise. We also discussed my sputum results which weren't good. MRSA has risen from the dead, pseudomonas aeruginosa was the life of the party as usual, and a newer bug that popped up was pseudomonas fluor-putida. Great, now the gang was all here, I thought to myself. I usually only culture pseaudomonas aeruginosa and the last time I had cultured MRSA was back in 2008. MRSA is sneaky though it can go to sleep and wake up whenever it wants. Keep in mind that these bugs are Cystic Fibrosis bugs only and no other "normal" person can catch what I have. Point blank, I'm not contagious. It's in my lungs and the bugs fancy my living quarters of CF lungs rather then clean fresh healthy lungs that "normal" people have. Just part of the joys of having Cystic Fibrosis, you never know what's cookin'.

Plan is to do Cayston via Altera nebulizer (3 times a day) for two months and then on the third month switch to Colistin via eflow nebulizer BID (twice a day) and continue that cycle. That will be my new nebulizer regimen as far as the nebulized antibiotic goes.

I started taking Doxycycline Hyclate 100 mg for the MRSA. One tablet twice a day. I did that for two days and for some reason it didn't go too well. This is the 2nd time that I have been on doxycycline and this time I was nauseous and throwing up both from the front and back ends. I know that oral antibiotics can be hard on the body, but to be in a fetal position all day was not a good response so I stopped taking it. Bactrim was ordered and I started the oral pill on Friday. I've been taking it twice a day and praying that the oral pill treats the goodies in my lungs. I don't want to have to resort to the intravenous way of treating the infections. Sometimes I don't have a say and my body is the one that has the last word. I've been going 5 months strong without needing a PICC line placed for intravenous antibiotics and would love to make it to the one year mark.

I had run high grade fevers last week ranging from 101.2, 102.5, to 103.7. Fevers often mean infection. Fevers are always uncomfortable because it keeps me from taking care of what I need to do most, which is my breathing treatments and airway clearance. When I have high fevers, it's like taking peanut butter, bacteria, and a 450 degree oven and baking for an hour here and there throughout the day. Basically a recipe for disaster! I called Dr. Light and he instructed me to switch every 4 hours between Tylenol and Ibuprofen which really helped. That and 2 cool showers every day seemed to do the trick. Luckily, I have been fever free as of yesterday, but I still know that I have an infection that needs to be treated.

Side note: I love that I am constantly learning from Dr. Light. A fun fact that he shared with me is that milia is common in those with Cystic Fibrosis. I started to recently notice a few small whitish bumps on my shoulders. He mentioned that because our skin is so salty it is common for milia to form on the skin. He told me to stay away from rich oily soaps. I've officially turned into a bar soap girl.

That is all for today. ::Splish...Splash::

Batter's Up

"I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!"
~Dr. Seuss

At times Cystic Fibrosis can be very dictating, but I've decided to make my own rules and show who's boss these days. There are different respiratory machines that are offered to help clear the secretions from our lungs, but throughout the years I have continued to drop in lung function despite having the Vest, Flutter, and Acapella on hand. Out of the three respiratory clearance devices that I own, I have found that I favor the flutter device because it's small and easy to travel with. Even though I show more favoritism towards the flutter, I have always continued to be compliant with my respiratory treatments and got to a point that even while doing different respiratory devices 4 to 5 times a day, I wasn't climbing higher as far as lung function goes. And like a rat in a maze, after running into the wall so many times, I started to look for a new path.

My last Pulmonary Function test showed my FEV1 in the 40's. When a Cystic Fibrosis patient drops to the 30's, a doctor proceeds to talk about going on the lung transplant list. And to me my lungs are my own and I can't give them up that easily especially not to Cystic Fibrosis. I believe that people come into our lives for a reason and I was blessed this year to have a respiratory therapist show me a respiratory device that could help get the mucus secretions up easier. I had thought that I knew every device that was out there for Cystic Fibrosis patients, but I had never known about the G5 Percussor! How did I not know about this!? This device provides vibration and percussion to create a powerful and comfortable percussion to get the goodies up. At first I felt mad that my past doctors had not told me about this machine because it really targets my problem areas which are in my upper airways. My upper airways in my right lung are really narrow from lung damage. I believe that if I would have known about this machine it could have possibly prevented some damage to my lungs that was caused by the disease. I realize that I can't focus on "what if" and I have to proceed with "right now."

I feel blessed to have this new device at my fingertips! My G5 Percussor:


For me respiratory treatments are like giving birth through the mouth haha. I do a lot of huffing, deep breathing, and blowing out to get the thick mucus up. After each respiratory session, I'm pooped. I'm happy to say though, having my G5 makes my secretions come up so much faster compared to the Vest, Flutter, and Acapella. Also, I get so many goodies up! I love it and have been feeling better since I started with the machine. Having tons of mucus in the body/lungs can feel like a huge weight and the goodies are better out then in! Hopefully having this new airway clearance device will help me out during my maze of life and I'll get my piece of cheese at the end.

Ferguson

What lies behind us and what lies before us are tiny matters compared to what lies within us. ~Ralph Waldo Emerson

It's amazing to me how sometimes the body has a way of healing itself.... if you just give it some time. Almost like a cactus in a way. A good 6 years ago, Hunter(my fiance), bought the perfect gift for me while I was on I.V. antibiotics at the hospital. Hunter had given me something unexpected and it was perfect. He arrived to the hospital with a cactus in hand. When my mom had asked him why a cactus and not flowers, he had responded that flowers die, a cactus won't. It was the most beautiful and thoughtful gift ever and we gave the cactus a name, Ferguson. Ferguson later became our love cactus and has been with us for a long time.

This past August, when we had moved, the Comcast guy had knocked him over and he had broke in half. I was in shock! Poor Ferguson! We needed to toothpick him, save him, glue him back together, or something. Comcast guy's attempt to kill Ferguson:
We continued to water Ferguson, watch him, and give him proper sunlight and he started to heal himself. He is still our amazing love cactus. He has grown more character from what he has been through and I think became stronger in a way, with his mickey mouse ears and all haha.


Ferguson healed! He just needed some time. :)

New Year's Eve(December 31st 2010), I started to go down hill. And after 2 and a half weeks of fighting a virus, I'm alive! Like Ferguson, I have healed! I had never experienced flu symptoms that severe in my whole life. During these past 2 and a half weeks, I had spent everyday running high grade fevers, having the chills, night sweats, not being able to keep down my food, not being able to go out and walk around, a whole bunch of mucus in my lung/sinus, and a constant cough(more then what I'm typically used to). The combination of my regular CF symptoms and having a virus was so intense it was as though someone had put a bag over my head and told me to lay down in ice water.

I knew I.V. antibiotics wouldn't help, that I had to just let the virus run it's course. At the same time I was worried because I needed to rest to fight the flu but I had to keep up with my daily health regimen and make sure that I didn't rest too much because I had to do respiratory therapy plus breathing machines to get the mucus out in order to prevent a severe lung infection. The virus and Cystic Fibrosis combination was so uncomfortable, I never thought that the feeling was going to end. I couldn't make it to Miami to see my doctors and it got so bad that my mom took me to a walk in clinic. I thought that I had mono I was so weak, sick, and exhausted. Luckily, I did not have mono and the doctor at the clinic diagnosed me with a bad virus. I started taking Tamiflu(1 pill, twice a day) and Cipro 750 mg(twice a day for 10 days). I also had on hand airborne tablets, iron 27 mg tablet, cf source vitamins, vitamin C 1000mg tablet, halls defense vitamin C drops, Nyquil cough syrup, Azithromycin 500 mg(M,W,F) and Tylenol extra strength because of the constant fevers. The constant song in my head during those days were, "If you're going through hell, keep on going don't slow down, if you're scared don't show it, you might get out before the devil even knows you're there." by Rodney Atkins. I'm just so glad I made it through the long haul, and the best part is I don't have to get I.V. antibiotics. Yay!

Release

In a way I've used my blog as a means to release emotion. And this seems like a good time to Release. I'm so excited for the New Year, I'm hoping 2011 will bring healthier moments. I'm starting off rocky on the health side because New Years eve I got hit with a nasty cold/flu and have been running 102.5 fever and coughing my brains out. I'm used to coughing on a typical day but at this point I'm so uncomfortable with snot and 10 times the amount of mucus due to the cold plus the combination of a sore throat that this situation isn't fun in the least. I'm surrounded by Nyquil, advil pm, cold-eeze, halls defense vitamin C, simply saline nose spray, zithromax and boxes of tissues and I'm hoping that one of these things will start having some beneficial affect. I hate when I get a cold because I spend most of my time praying that the sinus cold doesn't go and spread infection to my lungs. At that point it's game over and I.V. time. I'm going to the doctors tomorrow to see if a good oral antibiotic can kill whatever is starting to brew in my lungs.

Never in my life have I ever said "why me" when it comes to having Cystic Fibrosis. But lately I've been asking more questions trying to get down to the bottom of what the inside of my lungs look like. I feel as though if I had a chance to turn my body inside out for a day and really examine my lungs, I could have more of a game plan on what I'm truly up against. For the past 5 years I've had these crackles in my right upper lobes and I've just assumed that it was because I had a lot of mucus in my airways due to the disease. The crackling sounds in my lungs have become louder when I breathe and I started to wonder why I sounded like a bowl of rice crispies drenched in milk. I recently had a CT scan of my lungs and they found a lot of Bronchiectasis(damaged lung). A doctor had explained to me that the damaged lobe is floppy and its so damaged and narrow of a passageway that it makes that crackling sound. Basically it has no use, no airway function.

Bronchiectasis:

It's basically a breeding ground for infection. But I can't remove the damaged parts of my lungs because a CFer is told that we have to preserve as much of the lung as possible. And we can only go through the process of lung removal/transplant when it's basically a life or death situation and you need to have a lung transplant in order to live. Then comes a lot of anti-rejection medication and a whole other journey that I have yet to take and I'm pushing that door closed shut with all my might. My doctor believes that the removal of my right upper lobe wouldn't benefit me at this time and overall could cause more infection or more damage in the long run with the recovery being intense. So I just have to deal with the crackles for now and hope that I can maintain my lungs as long as possible.

A new chapter to 2011 is that I have stopped the PTC124/Alturen clinical trial that I was in. I had given one year of my life hoping that this drug would benefit me and really get into my system and help relieve some of my CF symptoms but it had done nothing. Then I signed up to do the extension of the clinical trial and after three months of being on "the real drug" my PFT's had dropped. I said sayonara and knew that it was time to take matters into my own hands. My old regimen consisted of pulmazyme, hypertonic saline 3%, and colistin(month on month off) and now my new daily regimen is pulmazyme, hypertonic saline solution 7%, and Cayston(month on month off). Hoping that switching up my health regimen and getting on some new medications could only help my lung function for the future. I'm hoping for a better year healthwise and hoping to breathe easier in 2011.

"Never let go of hope. One day you will see that it all has finally come together. What you have always wished for has finally come to be. You will look back and laugh at what has passed and you will ask yourself...'How did I get through all of that?"