3 month Kalydeco clinic visit

I had my first post Kalydeco clinic visit last Thursday. I’ve been on it for 3 months now. I was so anxious about the appointment, about doing my PFT’s. I wanted to see higher number so badly, just for further confirmation that it is working. And I’m happy to report I had a great visit!

Dr. D asked me how I was doing and if I noticed any changes. All my changes have been subtle, I never got that “wow” that I’ve heard others describe after they started K. My cough has decreased dramatically however. I cough during my morning treatment the most, then depending on the day I could go without coughing at all or maybe a slight cough during parts of the day. But overall I’m not very productive. I had a cold a while ago which stayed just that, never developed into a chest infection.

Dr. D assured me that these are along the lines of what she has seen with the off-label patients. She expects increased time between exacerbations & less mucus production. Hearing that this is what other off-label patients have experienced reassured me that this isn’t in my head and that K is working how it should be on me.

Then off to the PFT’s…

FEV1% = 74%

Great air intake, no crackling, no rails

That’s 2% higher then 4 months ago in May at my pre Kalydeco visit. Which was also 4 weeks post my IV tune up. Before that tune up my FEV1% was 70%. I haven’t seen a number higher then 72% since right before I got pregnant with my daughter 2 years ago. So I’m now 5 months post IV’s, 3 months post the start of Kalydeco and my lung function has increased slightly. I am so happy!

All of my PFT results since the end of 2006 were sent to her and she wanted to discuss the trend with me. My previous doctor always just told me my baseline was 72% which was my average and honestly I never paid much attention to it. It hasn’t been until recently that I’ve really started taking an active role in my care. So it was quite interesting to see everything. In 2007 (before I was pregnant with the twins) I had FEV1 of 72%, 76%, 72%, 76%.  Then the two years from 2008-2009 I didn’t blow above a 70%, mid 2009 was when I got really sick also, for a year I didn’t get above 60% actually. In early 2010 I started running and things shot up 70%-72% with the exception of two highs of 103% and 80% which was when I was training for the NYC Marathon. I remained consistent at 70% since the birth of my daughter. I had a tune up this past April 2013 and blew a 72% in May at my post IV / pre K appointment. Now I blew a 74%.

So it really showed me just how much exercise played in not only getting my lung function back up, but also in keeping it there. Although I can’t keep up with marathon type training, running and swimming 15 + miles a week is really important to my health. And the Kalydeco is working in its small ways for me, which is all I could have hoped for. To be the same lung function that I was 7 years ago after taking a dip for a few years is amazing to me.

In other news, I’m starting the TOBI Podhaler next month which will save SO much time! Overall great appointment. 

Quick update

I apologize it’s been so long since I last posted. Our days have been jam packed this summer and any free time is spent in the pool so my nights which is when I try to blog are spent cleaning up the house.

Not much to update about either. I’ve been feeling well, no better, no worse than a month ago. This past Saturday was the Boomer Cystic Fibrosis Run to Breathe in Central Park. Due to the weather conditions it was an untimed run, but it was a great run. I’ve decided to push myself hard and signed up for the Bronx 10 mile in September.

I have a CF appointment in early August. Hopefully I will continue to feel well and see some improvement in lung function.

I’ll try to update more often but I’m just having so much fun with my kiddos this summer!

2 weeks of Kalydeco

I’ve been on Kalydeco for 2 weeks now. I was told to give it 2 weeks – 1 month to really judge if it’s making a difference or not. My verdict… Yes, Kalydeco has made a huge difference in my symptoms. I can’t yet give an answer if it is clinically helping me but symptomatically it has improved my life a lot. I never thought I’d be writing a post on all my mucus changes, but in the hopes of helping someone with my mutations or other similar mutations know what they could expect from Kalydeco here goes…

 The past two days my cough has lessened again and it’s become even less productive. I have one “normal person” cough in the morning, just one singular cough, and spit up a small amount of mucus. But that is compared to waking up and having a mild – moderate coughing session for about 5 minutes coughing up thick mucus that collected in my lungs over night.

The past two days while I’ve done my nebs & vest I have not coughed up anything. I try. I still huff and cough and spit but no mucus. Ok, maybe in total I’ll see a dime size amount of pale yellow mixed in with my saliva.

During the day I’ve become much more conscious when I cough. When I do, most of the time it’s this dry cough that irritates my throat. Maybe asthma, maybe allergies, maybe both. But it’s different than my CF cough. It's strange to cough in the car and not need to reach for the box of tissues or put the baby down to sleep and not have to repeat in my mind "don't cough, don't cough" as I sneek out of her room.

I still find I’m having issues with my sinuses. I’m not blowing my nose constantly like I was when I fist started and I’m still doing a nasal wash twice but I’m noticing the mucus I’m clearing from my sinuses is sometimes green. Green = infection as far as I know. I haven’t had any sinus pain or pressure and I haven’t had any major issues with my sinuses since my surgery debacle about 8 years ago. I don’t know if just clearing stuff that was sitting up there for years? I’m going to try to do my TOBI with a mask for the next month and keep up with the sinus rinses and see what happens.  

I should be having a clinic visit around the 6 weeks mark but I’ve thought about buying one of those inexpensive FEV1 meters just so I can see if there are any changes between now and then. I should have done it before I started but I didn’t think of it. I’m curious to know if anyone else has one and if they blow similar scores as they do at clinic.

Surviving the sickness

I’m still feeling the same as I did on day 5. I basically had no cough from days 2-4 but from day 5 through today, day 11, I have been coughing. During those days it hasn’t gotten better or worse, just stayed the same. But compared to the day before I started Kalydeco my cough is significantly less and significantly less productive and the color for the most part is much lighter. Mostly in the morning and following my hypersal / vest treatment.

I was questioning why I stopped coughing and then started up again but after finding out at least one other person experienced the same thing helped ease my mind a bit. I still don’t understand why, maybe my body was just adjusting to the medication but it still was disappointing to have the cough come back, even though it is SO much of a difference. I had imagined my lungs clearing all the mucus out and it being gone forever. Wishful thinking I suppose!

So for now I’m calling it a victory as long as I don’t feel myself going in the opposite direction. I can live with stability, I welcome stability. And so far so good, I don’t think I’ve gotten the bug my kids have. The baby spiked a fever of 103 last night and was up every two hours. She slept with me the whole night and we wound up taking two cool showers because it felt like she was burning up. Logan woke up crying because his throat hurt him so much and croup was making him cough. I hate not being able to fix my children’s pain.

Got in a 2 mile run this morning, but before I got out of the car to start my run I text my ‘bestest’ CF friend “L” who had a super important clinic visit today. She had just found out that she passed the screening tests and was now enrolled in the Vertx Phase III trial. She needed this and prayed for this and it came along at the perfect time. Words can’t explain how happy and excited I am for her. A new beginning.

How we both wound up in this place, together, going through this at virtually the same time is a bittersweet story. I knew of her and she knew of me for a while, but it wasn’t until years later that she found me on facebook thru our mutual friend Nicole. The three of us all went to the same CF center, had the same doctor and were pregnant at the same time. L and I bonded in a way we never imagined - having to mourn the loss of our friend Nicole and her baby. Unthinkable circumstances brought us together. But we understand each other, our fears, our hopes, our ups and downs in a way that no one else can. In a way I am more excited for her to start the meds then I was for myself. I’m crossing my fingers she gets the real thing.

Normal is beautiful

Today was a normal, ordinary Friday.

 Yes, I know it’s Tuesday but I started writing this on Friday. Where does the time go? I feel like I only have about 5 minutes to myself everyday. But after a fun filled morning in the pediatrician’s office we are stuck home with two cases of croup and one viral fever. Prescribed an afternoon of movies and ice pops I’m finally sitting down for a bit before tacking the dishes that piled up over the weekend.

 So back to Friday…the kids and I woke up around 7:30, made a fresh batch of blueberry pancakes with maple syrup and sausage, all while chasing after Kaeli who’s new favorite sport is to climb up everything. And she is quite the climber for a 13 month old! Grandma came up and watched Kaeli, well got to watch Kaeli nap which means Grandma actually folded my laundry that has been piling up (thanks Grandma!) while I drove the boys to school and went for my 30 min swim.

 A lot of people tell me that swimming is boring. I actually find it very peaceful. It’s the exercise where I focus most on my breathing. When running I distract myself with music and concentrate on my pace, but with swimming the only noise I hear is my breathing. Just a steady in and out, in and out. It’s a time where I get to reflect and actually think without numerous distractions. Today I found myself thinking about how much I appreciate being able to have a normal ordinary Friday.

Normal is boring, tedious, and monotonous. Normal is frustrating, demanding, and challenging, But normal is beautiful. Normal is what I cherish most. I really try not to take normal for granted because it’s a joy I’ve seen ripped away from too many people.

 Of course I will remember the big things like the look on my boy’s faces when we walked into Disney World for the first time, the way I felt running over the Verrazano Bridge, holding my babies for the first time. But it’s those everyday, normal, ordinary things that I have a strong emotional attachment to. The simple things, too often taken for granted. It’s easy to lose perspective on the beauty of normal. Like making blueberry pancakes on a Friday morning, nursing and rocking the baby to sleep every night stroking her hair mesmerized by her face. Blasting the radio on a rainy afternoon and dancing around the living room, or all of us climbing into bed on a lazy afternoon and taking a nap together. Those are the things I will miss the most.

Those are the things I am fighting for. To have many more normal ordinary Fridays.

Becoming a mom

No real changes to report. I coughed a bit more than I did yesterday but significantly less than I have been pre-Kalydeco. And the color and quantity of the mucus is definitely lighter. I'm beginning to accept that Kalydeco is going to work slowly for me but that's ok. A lesson is patience. Maybe I won't be one of those people who sees a 30% increase in lung function but that's ok. It has already helped my cough and mucus so will hopefully help my lungs stay infection fee for longer periods of time. And any increase in lung function is welcomed!

So here is a little about me and the birth of my twins and the fight for my health that came shortly after...

I always knew I wanted to me a mom from the time I was a little girl, so when my husband and I got married, deciding to start a family was an easy decision. We did however put a lot of planning into starting a family. Luckily my lung function was stable with (FEV1 in the mid 70%’s) and I am pancreatic sufficient. I knew I wanted to be a stay at home mom so I continued to work for 4 more years (including while I was pregnant) to save up so I could afford to do so and my husband had a genetic test to rule out being a carrier of CF before I got pregnant.

We found out I was pregnant Memorial Day weekend and we were so thrilled. When I saw my obstetrician at around 9 weeks she gave me an ultrasound just so I could get a tiny peak at the baby. Well that ultrasound changed my life forever… I learned that I was carrying twins! I called my husband in total shock and it took about 2 weeks for it to really set in. I transitioned to a peri-natologist (high risk OB) who was affiliated with my CF hospital which also had a level IV NICU so we had all our bases covered. I can't say enough praises for my OB, he was fantastic the entire pregnancy and I owe my sanity through the pregnancy to him.

Despite being classified as a high risk, the pregnancy was textbook and uncomplicated. I loved being pregnant and it agreed with my body – no morning sickness, a 40lbs weight gain, stable lung function (apart from a slight drop at the end due to the lack of space in my lungs). I had one course of IV Ceftaz at 29 weeks after developing a productive cough but managed to continue to work from home until my boys were born.

One Thursday evening, two nights before I reached 32 weeks of pregnancy, I started to get mild but consistent contractions. By the time morning came they had not let up so we hed to the hospital and I was put on a saline drip, two heartbeat monitors and a contraction monitor. The doctors told me that they would not stop labor at this point, they were just going to monitor me and the babies and see how it went.

On Saturday afternoon, almost 48 hours after my contractions, they told me that I needed an emergency C-section because one of my sons was showing signs of distress. The Neonatal team came up to talk to me about the complications that could happen from a 32 week delivery and what I should expect. I’m not going to lie, what they told me scared the daylights out of me but I didn’t have a choice at that point. I was wheeled into the operating room (with about 20 medical staff in the room) and everything went very quickly. Both boys were born, the Neo-natologist teams made sure they were stable, and I got to briefly see them as they were rushed to the NICU.

J was born 4lbs 10oz and was on Bi-PAP for just a few hours. He had no preemie complications other than being jaundice and having to learn how to eat properly (suck, swallow, breathe). He was in the NICU for 4 weeks as a grower and feeder. L (the twin that was showing distress) was born 4lbs and had a few more problems, He was on a ventilator for a few days and Bi-PAP after that, had a PDA (hole in the heart), needed a blood transfusion and also had jaundice. On Christmas Eve, at 11 days old, the boys got to reunite in the same bed for the first time since birth. L was in the NICU for 6 weeks and his PDA closed on its own by the time he was 2 months old.

For me, coughing after my emergency section was rough. Since I didn’t do IV Tobramycin while pregnant I decided to do it while in the hospital after delivery and while the twins were in NICU so I could be in top shape for when they came home. It took me about 3 weeks to feel normal again after the surgery.

The year following the twins’ birth was a rough one, for a multitude of reasons:
1. There was two of them and one of me
2. I was breastfeeding & chose to be off TOBI
3. I had a C Section & was on IV immediately after delivery for 3 weeks
4. We had to limit visitors early on because of their prematurity
5. I wound up with kidney stones
6. I Got the flu in July ’09 for the first time ever – 2 weeks of home IV’s
7. The boys both got RSV Respiratory syncytial virus) in Dec ’09 and I wound up sick – another 2 weeks of home IV’s

I wasn’t sleeping well for a long time. Fitting in two treatments a day was impossible. July ’09 my lung function was the worst I’ve ever seen it – below 50% predicted – but I wasn’t feeling well and thought I would get back to my baseline once the first year was over. I just didn’t have time to think about anything other than the babies at that point in time. I was getting by doing the bare minimum vest & nebulizer treatments. I had very little energy to do anything and looking back I was probably somewhat depressed feeling “trapped” inside my home that first year. It was extremely difficult to go anywhere alone with two babies. It was near impossible to go even food shopping with two infants in car seats. I was very lucky to have my mom with me to help while my husband was at work.

After my 2 weeks of IV’s in December ’09 something clicked inside me and I knew I needed to get my butt in gear somehow. My lungs weren’t magically going to get better on their own without some hard work on my part. For the first time I was actually scared for my future. I was angry at myself for not trying harder, for underestimating what CF can do in such a short amount of time. I want to live, for myself, for my husband, for my children. And not just live, I want to have energy, run with them, dance with them, play with them. I woke up one day and joined a fitness center and began swimming again. For the first time in probably close to 7 years I was exercising again.

The following April, I decided to give myself the biggest push I ever have and signed up to run the New York City Marathon for Team Boomer later that year. On November 7th 2010 I completed 19 miles of the marathon before being forced to stop due to cold and exhaustion. May be if I hadn’t had a chest infection at the time I would have completed it, but from the beginning of this journey it was never about crossing the finish line. It was about challenging myself and pushing myself to be a better me. And I succeeded. I ran 19 miles when just seven months earlier I couldn’t even run a mile without getting out of breath. I was able to increase my lung function by over 50%. I learned so much about myself and I became a stronger person.

Kalydeco: Day 4 & a 5k

I woke up dry again this morning and didn't cough at all. I had to clear my throat of some mucus once but it was clear / light colored. During my vest / nebs I think I only had 2-3 good productive coughs which is different for me. HyperSal usually gets me clearing a decent amount of junk from my lungs in the morning.

Grandma was here to hang out with K while I dropped the boys to pre-k and went for my first outdoor 5K run this year. The weather was amazing. I haven't run (ok maybe 1/2 ran, 1/2 walked) those hills since before K was born. But now I'm pretty confidant that I'll be ready to run the 10K in July. I had a few quick coughs on my run and could feel my asthma making my chest tighter than I would like so I think next time I’m outdoors I will use my albuterol first.

I apologize for the short posts right now. I don’t have too much free time on my hands these days with the kids and hubby’s crazy work hours. I just really want to make sure I write down all the changes I see right now. I’ll work on some more personal posts for the future.

Kalydeco: Day 3

Woke up very dry. Dry mouth, dry nose. Didn't cough too much this morning, less than usual, but while doing HyperSal/Vest I did started to cough up junk. It was still the normal amount / color that I usually cough up when I do HS. Not blowing my nose as much as yesterday but I have a persistent post nasal drip that is causing me to constantly clear my throat that lasted all day and evening.

The boys had their swim lessons toady and I brought K in like I usually do. She is going to be a fish like her mom - she wouldn't stop jumping in the water! No fear of going underwater at all.

Today was probably the most gorgeous day we've had this year, and I would have loved to get out and run but couldn't escape the kiddos today.  Tomorrow I hope to get in my 3 miles while the boys are at school. I have to step it up to get ready for the Boomer 10K in July!

Kalydeco: Day 2

The same.

I think I'm over analyzing and reading too much into every sniffle and every cough! I just wish there was a clear sign that it's working. Sigh.

The only thing I noticed today is that I had been blowing my nose a lot more this afternoon and (TMI alert) it's been thick and greenish. Yuck. I also feel myself clearing my throat during the day and every time I wind up with some mucus in my mouth.

I don't want to 100% say this is from Kalydeco. This is my allergy season and my daughter has a cold and is full of snot herself. That combination could definitely be the cause of my symptoms.

Kalydeco: Day 1 & my pre-K stats

Yesterday I took my first dose of Kalydeco! The bottle has been teasing me for over a month now, sitting on my dresser, and it was a relief to be finally be able to start. My overall description of day 1: Anti-climactic! haha

NO change in symptoms
NO side effects
NOTHING

I don't exactly know what I was expecting, but I did expect something. After waiting for 32 years I'm getting impatient and don't want to have to wait for the medication to start working. Am I being a pessimist because I keep thinking maybe this won't work for me? Maybe I'm putting too much pressure on this little blue pill of "magic". I asked around in the CF community and based on my CF it sounds like I need to give it 2 weeks - 1 month to really judge it. Ok, Kalydeco, I'll be patient but PLEASE PLEASE work for me.

Since I don't have much to report I'll give you a brief rundown of my CF background.
-Mutations: DF508 & 3272-26a>g (class V)
-FEV1: 72% My baseline has remained at 72% for 5 years now although I have seen a low of 49% and a high of 109%. My last FEV1 before starting K was 72%
-I am pancreatic sufficient
-I have never had a problem bringing up mucus and am always told my lungs sound "clear"
-I usually cough first thing in the morning but by the time I finish my morning treatment I don't cough much during the day at all
-I culture staphylococcus aureus and pseudomonas aeruginosa
-Usually have IV's once a year but was able to go two years since being pregnant with my daughter and starting Cayston -Meds: Pulmo, HS, TOBI, Cayston, Advair

Back to Blogging.... (written April 8)

After 2 1/2 years I thing it's time to start blogging again. A lot has happened in those 2 1/2 years and I will recap one day when I have a few moments to myself but first I must confess why I have decided to start up again...

to document my experience on KALYDECO!!

Yea! After a bit of research and a lot of luck I was approved off-label! I was shaking and in tears when Foundation Care told me it was approved. I honestly didn't believe it and still don't. I am now anxiously waiting delivery of my first bottle and sorting out details of sweat tests, blood work and when I will take my first pill. There is still a lot I need & want to get done before that day comes but right now I am just over the moon excited. I feel like I've been awarded a new lease on life.

I still succeeded (part 3/3)

We stopped at mile marker 18 to take a photo together. We made it to “the wall”. And I hit that wall at full force. I felt like there was nothing left in me, We struggled on, fighting against my legs which didn’t want to move, we kept taking one step after the other, breathing into my gloves to get some warm air into my lungs. We pushed on towards mile 19, right before entering the Bronx. Joan wanted me to stop at the medical tent to warm up and see how my breathing was. They wrapped me up from head to toe in a warm wool blanket, and gave us pretzels and OJ. We sat there for about 10 minutes before my body stopped shaking but my lips were still purple.
Maybe if I wasn’t sick at the time, maybe if I didn’t have that asthma attack a month earlier, there are so many maybe’s that keep running though my mind. Maybe if things were different we would have decided to keep pushing on, mind over body. But because of my recent exacerbation, neither of us wanted to push too hard and risk something serious so we made the crushing decision to stop there.
At that exact moment I felt defeated, like a failure, I had disappointed everyone, most importantly I disappointed myself. We got on the bus which was already full of ‘drop outs’. I didn’t want to be one of them. I wanted to cross that finish line and get my medal.
Side story…the bus ride…oh, the horrible bus ride. Not only because of how I was feeling but we had the worst driver ever! Instead of sticking to the route he was supposed to take he announces that he’s skipping the other stops because the bus is full and we’re going directly to Central Park. Good right? Wrong. The guy makes every wrong turn he could possibly make, instead of pointing out to the police he was a “official marathon bus” badge so we can turn down the closed streets he drives all the way down to 53rd street and is headed to Times Square. We’ve been on the bus for over an hour already and it looks like we will be on at least another hour the way he was driving. Joan turn to me and says “I’m sorry, I have to pee, I have to get off the bus!” So we talk to the driver who drops us off on 53rd and 5th. We stop to use the restroom at a bar and then walk to 78th and Central Park West. Close to a two mile walk. Thanks for the ride bus driver!!
We picked up our belongings from the UPS trucks, bundled up in our hoodies and sweats, finally cozy warmth, and met up with our family outside the park. I was still bummed out about not finishing, and there was still a lot worth celebrating so we went to get burgers and beer at a place in the village. I don’t think I have ever eaten a burger that fast in my life. I was starving.
As much as that moment, the moment when I had to say, I’m dropping from the race, crushed my spirit, I know I accomplished so much more. From the beginning of this journey it was never about crossing the finish line, but more about challenging myself and pushing myself to be a better me. And I succeeded. I ran 19 miles, a personal best. Seven months earlier I couldn’t even run a mile without getting out of breath. I was able to increase my lung function over 50%. I learned so much about myself and have become a stronger person. This journey also brought me closer to the CF community by sharing my story, starting a blog and meeting others who share in my struggles. I met some incredible people by being part of Team Boomer and together we made a difference. My story was shared on the NYRR website and my CF clinic is sharing my success with younger CFers to encourage them to exercise. I feel very proud to have accomplished what I did in those 7 months.
Now here I sit, 10 days after the marathon with a PICC in my arm waiting for my nurse to ring my doorbell to change the dressing. Who goes from a marathon to IV meds? All in a normal day for a CFer!
So now what? I’m going to continue running and swimming. I’ll probably run about 10-15 miles a week (3 days a week) and swim 1-2 days a week. It will be nice to run just for fun, not with a set distance or set pace in mind. Just get outside with my IPod and run. I want to run a few ½ marathons including the one in Disney World. And part of me, the competitive side, still wants to cross that finish line and get my medal. So maybe I’ll be out there again in a few years! Anyone want to join me!?

Breathe, Enjoy the Moment (part 2/3)

A plane passed overheard flying a banner which read “Breathe. Enjoy the Moment.” I think that is the perfect saying for what lied ahead. And just like that the cannon blew and we we’re off (well after the 10 minutes it took for us to walk to the starting line amongst the crowd). I was lucky enough to be in the wave that was running on the lower level of the Verrazano (insert sarcasm here). No sun, decently strong winds, I was so glad I had kept me sweats and hat on.
It was a slow two mile span weaving in and out, passing and being passed by runners from all over. It’s amazing to me how many people from other countries enter the lottery to run in NYC. I couldn’t count the amount of different languages I heard in the starting village. On the bridge alone we passed runners from the CF Trust and a group from Ireland running in support of CF. How cool is that?! And speaking of charities, the NYC Marathon raised over $30million for charities in this years marathon. Team Boomer rose over $500,000 alone.
Back to running… as we passed the two mile mark at the end of the bridge we made our way up to the local streets of Brooklyn. I tossed off my sweats and hat but luckily kept the gloves. Here is where the race really began for me. The streets were lined with spectators cheering us on. The energy the crowd gave off was out of this world. People were blasting music from out their apartment windows, local bands were out on the street performing. Fire departments had their ladders out hanging banners and cheering everyone on. Signs were held in the crowd, some quite humorous… “hurry us, they are running out of free beer at the end.” Little children had their hands out hoping to get a ‘high five’ every now and then. Some were even passing out Halloween candy. And what I thought was totally cool was the few that stood before the port-o-potty’s holding toilet paper! Much needed, thank you! Most runners (including us) have their names written across the front of their shirts and when someone saw your name you would her “Come on Karen, you can do it, let’s go, you’re doing great!” What a rush! I didn’t even thing about running the first ten miles of the course. I literally “relaxed and enjoyed the moment.” And for those first ten miles the crowd never died. They were just as full of energy at mile ten as they were at mile 3.
As I ran up to the Gatorade station at mile 10 I saw Joan there waving at me. I stopped to stretch, took some salt tablets and off we went. Between mile 10-11 I could start to feel the energy slowly drain from my body. I didn’t expect this feeling to start until mile 13 but the weather conditions were much colder and windier than I was used to running in so it was taking more energy to keep my body warm. We kept running at a slightly slower pace though mile 13.5 when we hit the Pulaski Bridge into Queens. I had been running for just under 2.5 hrs at this point and I still felt great but started to feel my muscles starting to cramp. Nothing I haven’t felt before and nothing I couldn’t handle. We stopped to stretch and walked over the bridge. Then off we went again to the Queensboro Bridge.
Unfortunately my leg cramps were not getting any better by the time we got there (mile 15) and we had to go across the lower level of the bridge. The cold wind hit me like brick and I had no choice by to walk the bridge.
Here is where my memory is a little foggy. We started running again when we got over the bridge (mile 16) and I made it to mile 17 with much encouragement from my friend but I needed a break. We started walking, my knees didn’t want to bend, my muscles ached like I have never felt before and the cold air was hitting my lugs and making my entire body cold. I think it was somewhere around mile 18 that Joan knew I wasn’t going to be able to finish. My body was shaking I was so cold, I was physically and emotionally drained. I started crying, I don’t know why… because I was so cold? Because I hurt so much? Because the cold air was now preventing me from breathing in deeply? Because I knew deep down that I wasn’t going to make it 8 more miles

Marathon Morning (part 1/3)

I just haven’t had time to blog lately but there is so much I have to share about my experience with the NYC Marathon. I’m going to quickly sum up my race week experience…
I met Joan my former Peds CF doc and close friend of mine at the Javits Center for the expo. Since I have CF I was able to sign her up as an “official guide” for me and she is jumping in at mile 10 to be my running buddy for the remainder of the race. I’m soooo happy she will be with me to share this experience with me.
Saturday evening Boomer Esiason himself took the Team out to dinner and gave us a “pregame talk”. His son Gunnar was there as well. During dinner I got to talk with a few members of the team and we shared our CF stories. I loved how it felt to be closer to the CF community, not only though the computer but in person. Dinner didn’t last long since it was race day evening and we all had to get home for a good night sleep!
After a horrible nights sleep, my anxiety levels must have been through the roof, my alarm went off at 4:00 and it was time to quickly get dressed grab my bags and head to Central Park. The day was finally here, November 7, 2010. The day I was preparing for since April, the day of the NYC Marathon.
So down to Central Park we drove, hubby dropped me at our bus, I grabbed a bagel and hopped on. The sea of busses lining Central Park South slowly began to move and a large lump gathered in my throat. Off we went on the drive though Manhattan, Brooklyn and finally to the start in Staten Island. As we were stopped on the bridge we all looked out the windows toward the Manhattan skyline and thought “really? I have to run all the way back there!?”
We made our way off the bus and to our tent in charity village. (I’ll save you the bathroom etiquette – or lack there of – of my fellow marathoners). It was now 8:30ish and I was in wave three of the race, my start time wasn’t until 10:40, so needless to say I had a lot of time to kill! I ate a bit, drank lots of Gatorade, ‘glided’ up, pinned on my number and dropped off my bag with the UPS trucks. Walking around the start village with 43,000 other marathoners was crazy! The NYRR had everything very well organized but it was still hard not to feel intimidated by the sheer number of people.
10:00 came and it was time to get into the corrals. Three other woman on Team Boomer came to my corral with me, Whitney a mom to two CF boys, Haylie a college CFer and her running partner. The cannon went off for wave two and we saw 20,000 people run across the Verrazano Bridge! WOW!! What an amazing site that was.
It was on the colder side so I still had on my sweats, hat and gloves as I made my way to the starting line with Whitney who was going to be my running buddy for the first 10 miles…

Much better

So I laced up my running shoes again, this time at the gym since it was raining and I don't need to aggrivate my asthma anymore than it already is. Took my albuerol right before I left and hoped for the best. And I'm happy to report I had a much better run than Sunday's, five miles in just under an hour. I kept my pace slow between 5 and 5.2, and worked up a nice sweat. A few times during the run I could feel rails in my chest when breathing, but I couldn't cough anything up. This weekend is calling for 14 miles which I think I will be able to complete as long I keep improving.

I've been on the Bactrim for 5 days now, I'm also on my "on" month of TOBI. And I'm starting to see a slow improvement. I'm not coughing as much junk up in the morning and noticibly coughing during the day. I still don't have my voice back and my throat feels swolen but I can live with that as long as I can breathe and run.

Only 32 days left until Nov 7th!

Why NOW lungs? why NOW?

I wish I was writing a post on how I feel incredible and just finished an 18 mile run. But instead asthma is kicking my ass and taking me down. I'm trying not to feel disappointed in myself but right now I am. I feel like I'm not in control of the situation anymore and I'm angry about it.

I thought I had gotten rid of that nagging cough I had for a few weeks. When we left for vacation I was feeling pretty well. But one week ago my asthma started getting really bad. I wasn't getting short of breath, I just couldn't take a deep breath in. If felt as if someone was pushing back on my chest. Then my voice went. I sound like a boy going through puberty. A few days later the coughing began and it's been getting progressively worse. I was on a round of prednisone with helped a bit and am currently on Bactrim but I know the inevitable outcome of this situation. Another holiday season with IV's.

I'm always somewhat annoyed when I have to go on them but this time I am really angry. I have been so compliant and have been running my ass off and still. Not only that, but why NOW? Why with just a month until Marathon time does this have to happen? If I go on them now there is no way I'll be able to get back into running shape by Nov 7th. So I'm leaning to start them after the race. I just hope I can hang in there that long. Goal now is to get this asthma under control so I can start running again and hopefully the Bactrim can hold off the exacerbation from getting too bad.

Which brings me to this morning. My 18 mile run was cut in half. I ran 3 miles to start but my chest started getting tight even after albuterol. I didn't want to stop so I power walked until I hit 9 miles. The tightness never went away and I didn't want to push it so I stoped.

I don't have a car tomorrow so I'm stuck at home. I'll probably do an hour of the elliptical while the boys nap. And a call into clinic tomorrow is due. Hopefully I'll have a good report to write by Wednesday.

soooo tired

I've been dragging my butt for the past two days. On top of being completely sore in my upper legs Jayden has been up at 5:00 the past two nights. I can tell he's teething and I feel so bad for him, he has such a hard time with every tooth he gets. But bringing him to bed with me is the end of my sleep. I'm kicked in the throat, headbutted, pushed off the bed. He's horrible to sleep with! Plus, I'm so anxious about our upcoming vacation I can't sleep well. I keep tossing and turning and waking up every hour or two. And since I've just gotten rid of my cough I'm really worried that this lack of sleep is going to cause it to come back. UUgggg.

Short runs these past two days. I took it slow since my legs are still hurting. I don't want to injure myself. Mostly power walking with a light jog here and there. We won't get to Florida until Sunday afternoon so I won't be able to get my long run in until Monday morning. Hopefully once we arrive in Florida I'll be able to sleep better at least. I'm going to have to do my runs either early in the morning or at nap time. The time share we have has a fitness center and I'm going to look up local high schools to find a track for my long runs. Let's see how these lungs hold up in Florida weather. I never thought all this would be on the agenda for a vacation!

Unfortunately the RT at my clinic didn't come through in time and I won't have the acapella in time for this vacation, so I have to lug the vest down with me. Boo.

Honestly I'm so tired it's only 8:00 but I'm doing my nebs now and then going straight to bed. Good Night all.

15 miles & a layer of salt

Fifteen miles, 3 hours, 3 blisters, 1 sore toe, and a layer of salt so thick that it actually looked like I dusted my forehead and neck in chalk! But I feel fantastic!! I licked my lips a few times and they tasted like the dead sea. Yuck! Overall, I actually had much better time and endurance than I expected. But I guess that's the point of all this training. I ran 4 miles, walked 1, repeat, ran 2 walked 1, ran 2. My heart rate was still climbing a little higher than I would have liked, but my body is still getting used to all this exercise. I didn't fall short of breath not once, that is quite the accomplishment for me! I concentrated on deep breaths in through the nose and slow exhale out through the mouth. And it worked. My legs started to hurt around mile 12, but not nearly as bad as two weeks ago, and no knee pain either! Yay! Only one cough the entire run, finally these meds seemed to get rid of whatever it was that was causing me to cough.

Fifteen miles! I've tracked 15 miles on my odometer and wow that's a long distance. Completing 15 and feeling great after makes me certain that I can and will push myself to the limits and cross that finish line at 26.2. I think my adrenaline is still pumping 20hrs later.

The next thing I'm going to work on is running different terrain. So far I've done all of my long runs on flat surfaces. I don't have a running partner so I've felt too uncomfortable to run on trails alone incase something happens. I've stuck to more populated areas like the track. But I know NYC isn't as flat as a track so I have to work on my hills. Thinking I'll start this week by increasing the slope on the treadmill during my short runs and see how it effects me. Just take it slow like I have everything else.

I'm still so excited about this!!

Ten miles and still a cough

Ten mile run this morning finished in 2 hrs. I'm glad to see that I'm now able to keep up the 5mph pace for 10 miles. Next week is going to be a rough one.. 15 miles! Yikes. I think my average speed is definately going to be slower once I go past 10. I just can't keep running at the same pace. My legs start to burn and ache. I wound up at the gym on the treadmill for this one. Just a late start to the day. My SIL and BIL stayed the weekend and we stayed up late each night. And it didn't help that Jayden wound up in bed with us at 3:30am. Daddy is such a sucker he hates to hear him cry.

I just realized this weekend that I ran out of refills for HS. So now I have to remember to call Dr.B tomorrow so she can call it in so I'll have it in time for vacation. I still haven't heard anything back about the acapella...ggrrr. I really wanted it for vacation so I didn't have to lug the entire vest along.

I'm still coughing more than I'd like and it's really annoying me. I feel so great and my PFT's have never been higher but here I started this annoying cough. I'm only coughing up stuff 2-3 times a day, but I wasn't coughing at all for the past 7 months. September is generally my "sick" month with the change in weather and my allergies and asthma acting up. I'm 95% better this September than I have been for the past 7 Septembers so I think I'm going to make it though with all new meds added to my regimine.

Acapella?

I already posted my big CF update on Wednesday, but there are a few other things going on. Despite my significant rise in PFT's I still have a slight cough maybe bringing up a bit mucus 3-5 times a day. I was put on a new medication for me - Cefdinir and hopefully that will help. Dr. B also put me on Singulair at night to help with my asthma. I feel it when I'm running, I can't forget to bring my albuterol with me or I get really tight in the chest quickly. But I never feel the asthma during normal activity, which is probably why although I knew I had it I never really prioritized it. I've been on Advair for a couple of years now but was never very compliant with it. I'm really trying to be now. I keep it in the bathroom next to my toothbrush so I don't forget to take it.

The RT asked me if I wanted to try an Acapella. I said I was happy with my Vest because I know it's working for me right now so we didn't talk about it any further. I don't want to add another thing to clean to my daily regimen. But today as I was making my list of things to pack for vacation and trying to figure out how this will all fit in the car I re thunk getting an Acapella even if it is just for travel. I left a message with Dr. B about it and I have to call back on Wednesday for my culture results. I'll see what she says about getting one. This culture will also determine if I'm starting Caystom or not. I have a gut feeling I will be.

I'm going to browse around the blogs for a while now before bed. G-Night everyone.