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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