Adjustment After the Hospital

Ronnie posted yesterday that he’s home…YIPPEE. He has been home a week, and we are all adjusting to him being home. I know it sounds a little silly, we LOVE when he comes home and are all so happy to have him back, but there is always an adjustment period for all of us that can feel a little hairy.

There’s an obvious adjustment for Ronnie. He has just spent 3 weeks in the “quietness” of his hospital room. There are very little demands of his attention and time. He can sleep when he wants (kind of…I know nurses and PCTs like to come in at 2AM to do stuff they could do in the middle of the day…just because they don’t use their brains. HA!) He only has to worry about himself and getting better most of the day, everyday. He can eat when he wants to eat. He can sleep in. He can stay up late if he wants because he can sleep in. But when he comes home he has to hit the ground running. There are kids yelling and hanging on him. There’s a wife talking his ear off and expecting a partner to take on 50% of the household chores…and more than that, there’s a wife that wants to leave the kids with him and run out the door for her own little “quietness” after 3 weeks home alone. To say there’s a bit of an adjustment needed is the understatement of the century.

The kids and I have to adjust too. By the time he comes home, our days and routines have hit a new groove that works for the three of us. I’m used to being a single mom. Our morning routine looks a certain way. Our nap time and bedtime routines look a certain way. Our schedule fits what works for the 3 of us vs. factoring in Ronnie’s schedule as well. My evenings look different. I shut down post bedtime and retreat to my room to watch TV and crash early. All of that needs to shift again back to the old routine, or at least an updated version of the old routine (we sometimes use this time as an opportunity to reboot our routines).

The kids have to adjust in their own way too. They are no longer the center of attention like they were before. They now have to share my attention at home, in the car, etc. with Ronnie. For Mckenna this can be hard. Keni is our little talker. She talks non-stop. When daddy is gone, mommy almost always has an ear to listen. When daddy comes back, she has competition for my ears. When it’s just me at home, I plan our days to include stuff that is very kid-centered a lot of the day. Once Ronnie is home, it’s back to a more healthy balance. She also is very excited to see Ronnie, but has to share his attention with me and Bennett. It’s a tough adjustment for her.

With all that said, we are so thankful to have him home. It makes life so much more awesome. My mom said it best when I told her we were having to “adjust to Ronnie being home”. She responded, “nice to have to adjust.” Amen to that! Nice indeed!

Out On Bail

Well, I'm home.

I got out last Wednesday and still adjusting a bit to the "real world".  For sitting around as much as I do, it's amazing how little energy I have to keep up with our crazy life upon release. It usually takes me at least a few days to adjust. Now Monday, I feel like I have adjusted pretty well and probably running on at least 70% of my cylinders.

I was back at the gym on Thursday, so of course I had trouble walking, sitting, crouching, and going potty (that required me to sit on a throne) this weekend. The soreness was pretty much gone today, but at the gym we did two variations of squats plus other leg workouts, so I'm pretty much hosed the rest of the week.

The weekend was pretty much the picture of perfection for me and a great way to welcome me back home. On Saturday, Mandi and a friend ran 20 miles (that's not a typo), so I had the kids all alone for the early hours of Saturday. We filled it with a lot of snuggles, playing, a walk and chilling at the coffee shop. I met Mandi at the gym after her run and we did a lot of hanging out until our date night. We managed to fit in dinner, massages and fro-yo into 2 and a half hours. Besides the masseuse complaining that she only got a 7 dollar tip, it was a great night ;)

Sunday was full of family walks, chores, church and family time. Went over to the in-laws for swimming and dinner. Always a good time, and good food. Never a complaint.

So anywho, happy to be back and looking forward to being 100% really soon.

No Major Setbacks

Hospital Stay: Day 21

He said – Well, I sure hope I'm coming down towards the end of this stay. After a setback last week, it feels like I've been getting incrementally better, although I wish it was faster and more consistent. Feels like my health is changing by the hour some days. Fortunately, I haven't had any major setbacks this stay so I will certainly count my blessings.

For now, I'll continue to take it easy; Stuff my face with food; Drink about 120 ounces of water a day; and try not to go insane. The end is near.

She said – This stay is flying by. Our days are so jam-packed that they all just flow one into the next. These days have looked a lot like the past days. Every day has been filled with the gym, swim lessons, a playdate or two, and some errands and some naps. There was school Friday and today. This weekend we went down to see Ronnie Saturday after my long run and the gym. We stayed over night, so Mckenna got to have another sleepover with Ronnie, which is her absolute favorite. We also really lucked out because there was an event at the hospital for all the kiddos…so there were booths with people doing hair, makeup and face paint. They had characters in costume, games, pizza and cupcakes. Keni was in heaven! We stayed until mid-morning on Sunday, and then headed back to Phoenix where we went straight to my parents’ house with my brother, sister-in-law, and niece, and we all just hung by the pool.

Today was more of the usual. The only new tidbit was that I volunteered at Keni’s school, which she always loves, and always leaves me thankful I just have one preschooler at home and not 12! Ha!

We are holding tight to hear how Ronnie’s PFTs look tomorrow. I know he is itching to get out. We miss him a lot, so we’ve love for him to get home SOON. That said, we are doing well, so we don’t want him to get out any earlier than he needs!

Blueberry Scones. Yum.

Hospital Stay: Day 10

He said – Today was a pretty lazy day. I did get outside to catch some rays and get the heart rate going a bit, but other than that, I was purty lazy. I'm improving daily and feel like I'm probably 50% of the way there or so. As soon as I feel like I'm in a position to succeed outside of these walls, I'm outta here!

They started baking cookies and scones in the cafeteria and putting them out at 9pm. Currently eating a blueberry scone. Gaining weight will be no issue :) 

She said – Today was one of those days when you completely overestimate how much you can fit into a day, but it was a fun day and it went quickly. We took Bennett to swim, came home just in time for our sitter to show up…who I had so I could get a run in and work. She hung with the kids, and then I got home, just in time to take a quick shower, and throw the kids into the car to meet another CF wife and her kiddos at Chick-fil-a to chat and let the kids play. We then popped by my parents’ house because we were up in their neck of the woods. We headed straight to the gym from there so I could get in my back workout and then rushed home to meet our friends at our house to do a pizza dinner in the park. They left right at bedtime, so the kids quickly took baths and I threw them into bed! I did my post bedtime tidy, ate my dinner, and relaxed in bed! It was a good day!

A Big Jump

Hospital Stay: Day 9

He said – Today was a great day. I got to hang out with the fam the last couple of days, and they are certainly the burst of energy that I need while I'm in here...and in a strange way, also an energy drain :) Mandi and I even got to have a date night that consisted of a cafeteria turkey melt and some onion rings. But, and this is a big but, they brought back late night freshly baked cookies to the cafeteria, so we were able to take full advantage. I definitely paid for that decision the next morning.

On the health front, I'm improving. In fact, I made quite a big jump in a week with regards to my FEV1. I came in at a 36% and yesterday I blew a 63%. Now, I didn't feel as bad as a 36 when I came in, but I don't feel as good as a 63 now, so ultimately, the numbers are just numbers.

I'm hoping that in the next week I can start feeling more and more normal and be in a position to kick some booty outside of these walls.

She said – The last couple of days have been fun. We went down to see Ronnie on Tuesday and spent the night at his mom’s house, and then saw him again this morning. Monday night we slept at my parents’ house so Tuesday morning I could get my training run in while the kids were with my parents. Then we headed back towards our house. On the way, we went to Bennett’s swim lesson and the gym and then onto home where we packed up and headed for Tucson. I had a thing for work in Tucson Tuesday night, so we got down there in the mid-afternoon so we could hang out for a bit before I went to my work obligation and the kids went with Ronnie’s mom to Chuck E Cheese. I got back home in time to put the kids down, and then headed back to the hospital for a short little date with Ronnie. Today we brought Ronnie breakfast, hung in the room, played soccer outside, and then headed for home. Once home, we relaxed a bit and then headed to the gym where I met a friend for leg day. It’s always nice to have a buddy at the gym so it feels less awful! Ha! We got home in time for dinner and bedtime routine. One thing I do every night that I haven’t documented here yet is after the kids go down, I do 15-20 minutes of a house tidy. Literally no part of me wants to, but I know that if I don’t, things will get away from me, and then I’ll feel miserable. So I wash all the dishes, pick up, take out the trash, you know, the very basic things you have to do to make your house not look like a war zone. It always feels so good when it’s done, and when I wake up the next day, I’m happy to wake up to a clean house…it feels like a fresh start.

I am so thankful for our time down in Tucson. It sure is nice to see Ronnie’s face in the flesh, even if it’s just for a short amount of time!

Sunny Day

Hospital Stay: Day 6

He said - I finally got outside today and sat in the sun. It was nice, but you would have thought I ran a marathon when I got back. I still have a little ways to go in here ;)

Other than that, today was a lazy day culminating with a meatball sub made by my brother and mom - yummy. My cousin also brought up a peach/lemon Eeggee (slushy type of thing) and it was pretty glorious. I only get Eeggee's when I'm in the hospital, so it's always a nice little treat to look forward to. 

She said - Today was another pretty good day. Bennett is cutting his top two teeth, so he was up a lot last night. That meant I was a little sleepy today, which meant my fuse was a little shorter. But overall, Mckenna had a good day and Bennett was happy and took a great 3 hour nap…probably making up for his lack of sleep last night. I had a sitter come this morning, so I could get my long run in with my running buddy. We even stopped our run at the coffee shop next to our house to grab an iced coffee before walking home. It was so nice to have a morning of adult conversation. The intention was to go to church after that, but Bennett slept through church, and well, momma wasn’t waking that sleeping baby! But his long nap gave Mckenna and I some nice one-on-one play time that I think she really needed. After Bennett woke up, Keni went down for her nap, so I got one-on-one time with him too. Post naps, we ran a couple errands, and then went to hang out with our friends for a little bit before dinner and bedtime routine. 

Another good day in the books. Here’s to hoping Bennett sleeps tonight!!!

I'm Just a Phone Call Away

Hospital Stay: Day 5 

He said –Today was a great day with my family. I wasn't feeling all that great, but I did my best to be present and active while they were here.

I've been battling nausea a lot this stay and it really seems to be taking it out of me. But, the lung pain is improving and I think I'm close to being able to take a deep, full breath. When I'm able to do that, I'm sure things will improve much quicker.

It was tough to see them go, but having them around is a good reminder for why I'm here.

She said – Today we got to see Ronnie! We planned on going down to see him tomorrow, but this morning Mckenna was missing Ronnie something fierce. There were tears. She insisted she couldn’t wait one more sleep until she saw him. I tried selling the idea that we were going to do something fun today and that it would make the day go fast. She asked me if I could go do that really fun thing by myself while she went to see daddy. It was then I knew that little girl just needed her daddy. So off we went to Tucson.

We had a nice visit. Poor Ronnie seemed like he wasn't 100% up for visitors, but he rallied for the sake of his Daddy’s Girl! We had lunch, went to the library, and played at the gift shop.

When we left it was brutal. Mckenna was the most upset I’ve seen her about leaving Ronnie. If she made eye contact with him she would just lose it. But we all got through the goodbye, and she slept off her sorrows on the drive home.

We got home just in time for dinner and bedtime routine. I put Bennett down and surprised Mckenna with a “girl’s night”…we watched a show and ate popcorn in my bed. It was a nice way to end the day!

As expected...

Hospital Day #2

He said – I'm not a big napper, but today I was sleepy. I even managed to take a snooze for about an hour. I'm still looking for the truck that ran me over, but I am seeing little signs of improvement.

Little brother made my dinner tonight - chicken breast with BBQ sauce, asparagus and sweet potato fries. And yes ladies, he's single :)

She said – Day numero dos was another success. Keni is seriously nailing it the last couple days. She’s been an awesome listener, tabled the sass, and has been a joy to be around. Bennett has been a little needy, but he only got up to eat once last night again, so I give him a gold star. I even managed to get their naps to overlap by 45 minutes so I could sneak in a little more work and a little kid-free time! #Winning.

Today was packed full again. We got up and had breakfast; went to Bennett’s swim lesson; and then went to the gym. We then scurried home because I had a babysitter coming so I could get a run in (I’m training for another marathon, and I don’t like running on the treadmill). The kids were with the sitter a few hours while I ran and then did a couple hours of work. I came home and surprised Mckenna with a trip to Chick-fil-a for lunch since she had been such a good girl the last couple days. We came home for naps for the kiddos and then left again for a playdate and dinner with friends. Then it was bedtime!

The day flew by and everyone made it through it with happy hearts! Success.

First Day In the Hole

You know when you have known someone for a really long time, except you don’t know their name. They told you it once, but you don’t remember it, and it’s been too long to ask them? Well it kind of feels like to write a blog after not writing one for so long. It’s a little awkward, but at some point, it’s necessary to bite the bullet and ask your name-less BFF their name.

I decided a great way to get back to blogging is to take it back to the basics. This blog started just to document my journey to get back lung function and run a mile, back in 2009 by writing what I did daily. So to get back into the groove, I’m bringing it back old school. I came into the hospital for a tune-up yesterday, so I am going to document my stay and what each day looks like. To add a little fun, we are going to make it a he said-she said format; I am going to write what I did during the day and Mandi is going to share her day…if we are feeling really crazy, maybe Mckenna will share her perspective some days here and there.

Hospital Stay: Day 1 

He said: Today was like most first days in the Hole…It felt like I had poison flowing through my body. I was tired, my eyes were heavy and I was achy all over. I also did PFTs and ended up having the worst numbers I’ve seen since 2009. I’m not shocked, but seeing an FEV1 of 36% was a bit jolting. You know what they say – Nowhere to go but up!

My lungs are certainly feeling much more junky than normal and I have a stabbing pain that is preventing me from taking a full breath. So, are my lungs really that sick right now? Probably not. But I have a lot of work to do and feeling like this is not acceptable, so I’ll do whatever it takes to dig out of this hole.

Looking forward to the challenge.

She said: Today is our first full day of Ronnie in the hole. It started out awesome because both kids slept well! Bennett was only up once in the night to eat, and Mckenna slept in my bed, so I didn’t hear from her except a little snuggle here and there.

We crammed the day full of activities to help the day go faster. First up was the typical morning routine of cartoons and breakfast, then Bennett had a swim lesson, I volunteered at Keni’s school (Bennett came too). After volunteering, Bennett and I came home, he took a nap while I worked, and then we went back to school to pick up Keni. It was then home for naps. While the kids napped I picked up the house and got a little more work in. Post-naps I met a friend at the gym for leg day. After the gym it was home for dinner, baths, and bed.

All in all it was a great day. How Mckenna behaves usually dictates how good the day feels to me…to be honest. Mckenna was a good little listener with a happy heart today, so the day felt pretty smooth. Unfortunately, we did have a couple little crying bouts by Mckenna because she missed Ronnie, but she recovered and was good otherwise. This stay seems like it bums her out more than stays in the past. The stays after Ronnie’s crazy stay where he was in for longer and I had to be with him for 3 weeks, seem to be harder on her. But she will get it one day!

Hemoptysis in the Hospital

This has proven to be a different kind of hospital stay for me so far. Many of my stays are exactly the same in terms of how I feel coming in and how I feel going out. I have the usual chest tightness, increased cough, increased sputum, decreased energy, and the list goes on. Generally, I come into the hospital not feeling great in the first few days always have me feeling even worse due to the poison antibiotics running through my veins. After the first few days I start to incrementally improve over the course of the next two weeks usually to be discharged feeling like a million bucks.

This stay started out like so many before it but a recent turn of events have made it unlike any other.

On Wednesday night I was falling in and out of sleep watching Netflix. I woke up around 12:45am or so and decided to put the head of my bed down to be a little more comfortable. And then it happened, a feeling that many of my fellow cysters and fibros the world over recognize, the rattling of the chest and the gurgling in the throat. I knew immediately what is happening as it is a sensation I have felt many times before.

Only a representation of what I remember it looking like :)

I got out of the bed and walked into the bathroom and spit out a mouthful of bright, red, fresh blood directly into the toilet. I proceeded to cough up a generous amount of blood into the toilet before turning to the sink as the blood splashing upon the toilet water and dripping onto the floor was not painting a pretty picture. At this point there was blood on the toilet seat, on the floor around the toilet, in the toilet and on the walls near the toilet. As I was transitioning from the toilet to the sink I let out a cough that I couldn't quite hold in and blood spattered on the faucets and wall behind the sink. I leaned over the sink turned the water on and tried to clean as I coughed. I was doing my best to not get the blood everywhere, as evidenced by my hands which were now covered, but my attempts failed as the bathroom looked like a murder scene and I was the prime suspect.

In between one of my coughing fits I managed to press the call light to try to get some assistance. At this point I was feeling a bit lightheaded and worried that I wouldn't be able to stand much longer. I can't imagine what my nurse thought as she walked into my room well after midnight not finding me in my bed but instead covered in blood in my bathroom. If it's any indication her first words were, "Oh no!!"

Within minutes there was a rapid response team in my room. I stayed in the bathroom until the blood ceased and when I walked out and saw 8 people standing in my room or immediately outside of it and I said, “It's not that big of a deal guys!". I was sat down in the chair and the questions ensued.

Yes, this is happened before.
No. There hasn't been this much blood since 2009.
Yes, I feel lightheaded.
No, I don't feel dizzy.

Since the active bleeding stopped and my vitals did not look alarmingly bad, they just decided to order an x-ray and different blood panels.

On Thursday morning I felt like I had coughed up a lot of blood the night before.  I had body and joint aches and my lungs were experiencing a bit of pain.  I also sat up for the rest of the night as to try and avoid another bleed.  The rest of the morning was normal with doctors coming in and out of my room and breakfast nourishing my body. Then around 1:30pm or so, it happened again.

This time I grabbed a nearby bucket that they had given me the night before as I new they would want to get a measurement. The rapid response team was again called and as a result of my prior history and the fact that I had coughed up an additional 100 mL on top of the estimated 150 to 200 mL the night before, I was sent to the ICU for observation. They wanted to be sure I was in a place that I could get immediate attention if a massive hemoptysis visited me again.

After consultation with the pulmonary team and interventional radiology it was decided that a bronchial artery embolization (BAE) was needed. I've had two of these procedures in the past, once done to both lungs and once done to only one side (forget which one). I was admitted to the ICU on Thursday afternoon and wheeled down to have the procedure on Friday at 5 PM.

Not my lung. My bleed was from my left BA and they used foam and beads.

The procedure took about two hours to complete and according to the surgeon's notes and also the fact that I have not coughed up any more blood, it seems to be a success! I can will bleed again in the future and just pray that it will be at least another 6 years before it is an episode that needs to be addressed.

I was moved back to my regular floor late Saturday night and I'm very grateful to the ICU nurses who took care of me, the interventional radiologists who did my procedure, all those involved on the rapid response teams, my nurses and techs on 3NE, my pulmonary and CF teams, and all my family and friends.

Side Note: I have to brag a little bit about my family support. Mandi was at our home in Chandler when the second episode of hemoptysis occurred.  In fact, she happened to FaceTime me as I was holding the bucket of blood. The concern on her face was of course expected and immediate. I told her not to worry and that I would call her with an update. Before I had the chance to call, she let me know that the girls and her were on their way up to meet my in-laws at a halfway point between our houses. Eric and Nancy didn't think twice about taking the girls for an unknown period of time even though they had just picked up dear friends from the airport who were in town for a visit. I am so very grateful. I'd be remiss if I didn't mention that my wife ended up driving back to Phoenix the next day to get the girls and bring them back down the very same day. They arrived shortly after my procedure and were with me while recovering (Friday night) and the entire weekend. When my wife wasn't by my side, my mom was. And finally, I received many texts and prayers of support from my family and friends.

And finally, honor and praise to my Lord and Savior Jesus Christ who guided the hands of the IR team, protected my wife on the roads and sustained my health and spirit throughout the entire process. God is always good.

Tune-Up Shopping and Packing List

I was asked last week what I bring to the hospital, or at least what I brought this time, so I thought I would share my "shopping list" and packing list. Let me know what we have in common or what I need to consider bringing next time!

Clothing:

I usually pack around 7 "outfits" and they will last me my entire stay. Worst case, my mom lives in Tucson and is always willing to do a load of laundry for me. I wear nothing but t-shirts and athletic shorts, but always make sure to pack a sweatshirt or long-sleeved shirt in case my room is unusually cold. I also bring a pair of slippers, a pair of sandals and a pair of running shoes. Also have my hat for those crazy hair days.

Toiletries:

Again, I bring the usual stuff like my own toothbrush, toothpaste, shampoo and comb. Something I bring that others may not is my own bar of soap. Hospital soap sucks. I bring it in a little travel case so I don't have to worry about it touching down in the shower. I also will bring chapstick or vaseline as I always seem to get cracked lips in here.

Not really toiletries, but related, I bring my own bath towels and bath mat. Hospital bath towels are about as absorbent as a duck's back.

Bedding:

I bring my own pillows with pillow cases as well as my own comforter. These get washed as soon as I get home and stored for the next hospital stay.

Electronics:

I of course have my phone, headphones and laptop, but what I bring along that most others don't is a separate monitor to make working easier in the Hole. I use two screens at home when I work, and with what I do, it makes it much easier. Anything I can do to make work easier from the Hole, I will do as it is already hard enough!

I also bring my own single cup Keurig machine to brew my own coffee while here. The coffee that the hospital sends up is always puke-warm and watered down.

Funny thing is that I bring my Playstation 3 but only set it up about a quarter of the time. I never have it set up at home and always think I'll have the urge to play it when I come in here, but it rarely happens. I always bring it just in case.

Food:

This will probably just be easier to list. This doesn't include all of the candy I bring and that is brought to me, but I did include sweets that I "need" in here. I have a major sweet tooth that only amplifies when getting a tune-up.

Dried Mango
Oreos
Walmart Brand Oreos (for a taste test)
Fruit and Nut Medley trail mix
Gummy Bears
Cinnabon Cereal
Golden Grahams Cereal
Boom Chicka Pop (kettle corn)
Jelly Beans
Random Assortment of Candy (Starburst, Skittles, Laffy Taffy, Bottle Caps)
Gevalia Coffee k-cups - Colombian
Donut Shop Blend Coffee k-cups
Green Mountain Coffee Nantucket Blend k-cups
Gallon Jugs or Water for Keurig
Original Coffee-mate Coffee Creamer
French Vanilla Coffee-mate Coffee Creamer
Equal

After I get admitted, my mom and brother always bring by some of the stuff listed above as well as plastic silverware, plastic bowls, coffee cups, little table and table cloth.

When people come into my room their reaction is almost always the same, "Wow, you have quite the set-up in here!"

My response is almost always the same too, "After 35 years of doing this, you learn a thing or too!"

Does CF Consume Your Life?

Do you feel like CF consumes your life?

I get asked quite a bit if it feels like CF consumes my life since I do so many treatments and make sure that I exercise daily. I of course don't feel like my life is all about CF, but I thought it would be handy to put it into numbers to see if I could make it more clear. So, for this little exercise, I'll take 2012 vs. 2008. I'm taking these two years because they seem to be the average year before and after I got serious, or better put, "re-serious" about my health.

2008 in hours
Treatments: 547
Exercise: 182
Hospital Stays: 1680
Total hours devoted to cystic fibrosis: 2409 or 28% of all available hours

2012 in hours

Treatments: 1095

Exercise: 547

Hospital Stays: 720

Total hours devoted to cystic fibrosis: 2362 or 26% of all available hours

So when you look at those numbers, it looks like a wash right? I'm still devoting basically the same number of hours per year towards "taking care of business" when it comes to CF. However, looking deep into the numbers you'll see that in 2012 I am spent double the amount of time doing treatments, triple the amount of time exercising but less than half of the time in the hospital when compared to 2008. I don't know about you, but I would MUCH rather be doing treatments and exercising vs. being in the Hole. 

There are a couple more important numbers however that need to be thrown into this equation:

2008 lung function

Highest high: 79% FVC 68% FEV1

Lowest low: 64% FVC 54% FEV1

2012 lung function

Highest high: 87% FVC 74% FEV1

Lowest low: 78% FVC 63% FEV1

**It should also be noted that

a) I started a new predicted model in 2009 that would have actually had my 2012 numbers even higher compared to my 2008 numbers and

b) Since "on average" "they" say that "lung functions declines by 2% per year", my net gain is actually even higher!

Now, CF is definitely more about lung function and those numbers don't always correlate with how I feel. I can tell you this without a doubt though, if I had to quantify how I felt in 2012 vs. how I felt in 2008, it wouldn't even be close.

In 2012 I could...

breathe better.

laugh longer.

run further.

sleep sounder.

expect a brighter future.

So if 2012 was an average year of awesomeness, 2008 wouldn't have even of registered on the same scale.

We all know that cystic fibrosis is about more than just numbers. But sometimes, numbers can help make things more clear. By looking at the numbers above, it's clear that the more I did for my health, the more my health did for me. Sure, a quarter of one's life devoted to anything seems like a lot, but I can tell you this, I've enjoyed the other 75% of my life a whole lot more in 2012 than I did back in 2008.

Confessions of a Selfish Wife

Well happy Monday, right?! The title sounds a bit extreme. "It's the holidays…where's the merriness?" You may be thinking. Don't worry, this post won't be as depressing as that title leads you to believe ;-) This post may be a bit heavy for two days before Christmas, but it's timely in our lives right now, so here you have it.

Ronnie's hospital stay is coming to an end. We are so close I can taste it. It's been a decently long stay (3 weeks exactly). It's actually been a pretty good tune-up all around (I'll post more on what Mckenna and I did to keep busy in another post or this one will ramble even more than normal…I know, seems impossible to ramble even more, doesn't it?! Trust me, I can go all day). Anyways, the stay has been pretty good. I think it's been the best one since Mckenna was born. She was good. We kept busy. I kept my sanity. All in all…a win.

During the stay, I got a message from a girl with CF. She is also battling a flare up and is having a harder than usual time getting back up to par. She has a boyfriend. He is usually good at handling her CF, but this time she wasn't getting as much as she needed from him. He was indifferent to her feelings during this time and not opening up. She wrote me asking: "So I guess my question is, how have you and Ronnie had a successful marriage?"

Talk about a doozy, right? I answered her the only way I knew how: honestly. My response boiled down to this…we have a successful marriage, but that doesn't mean I don't suck as a wife from time to time (more often than I like to admit). And not that you're asking, but I'll tell you anyways, here's what I think about successful CF relationships.

CF spouses are people first. I think sometimes we forget this. We all do. CF patients and spouses alike. We are often told, "oh you're so special" for marrying someone with CF. And sometimes we allow those sentiments to change our expectations of ourselves. In reality, we aren't special. We are human. We fell in love with someone with CF, and we went with it. Sure the lifestyle is a little different, but CF spouses aren't the only people that fall in love and sign up for a life that's a little different. In fact, most couples and families have some sort of "challenge" that they "sign up for"…a spouse that travels a lot, a spouse in the military, a spouse that's ugly (haha that one was a really bad joke..I kid. I kid). Anyways, back to my point. The point is, we are just people. And when there are conflicts in a CF relationship, we sometimes bring CF into the mix, when really if we just took CF out of it and just looked at the person or the issue, it would be a different story. For example, in the case of the girl that messaged me. She was concerned that he wouldn't listen to her fears about CF and wouldn't open up. In a CF relationship, and because it has to do with CF, we may blow this up. We wonder, "does this mean he can't handle a life with me? Can he not handle CF?" When sometimes it's as simple as this. He's just a person. He's just a guy. Most guys suck at discussing feelings and would rather rip out their fingernails one by one than sit and talk about their own feelings. When he doesn't listen to feelings about school or work, we don't think anything of it. We give him a free pass and let him play the "honey, I'm a guy" card. We allow him to say, "unless you give me something to fix…let's not discuss it." (Anyone else's husband operate this way?! Unless Ronnie can fix it, he doesn't really want to discuss the what ifs and hear all my hims and haws. I bore him with them anyways, but I know he doesn't really want to hear them). But because it has to do with CF, we sometimes think too seriously about things that may otherwise go unnoticed.

Do I think we shouldn't strive to be extraordinary spouses? No. I think we should always strive to be better. But, ultimately, we are just human. We experience the same less-than-heroic-thoughts that everyone has. Which brings me to my second point: I'm a selfish wife.

Woah… it just got real, y'all!

Here's the truth: my husband sugar coats me in his own mind. We have a great marriage, but I'm not 2013's Wife of the Year. Ronnie thinks I'm the best wife in the world because he loves me, but I suck most of the time. Most of us share the good and keep private the bad (thanks for that, honey!) But I realized in reading her message that we've maybe perpetuated the high expectations for CF spouses through what we share (or more accurately, don't share). I think we only hear the highlights in some CF couples' relationships, and then it leaves younger CF patients looking for this perfect person to spend their life with. When in reality, you'll never find someone perfect to marry, CF or not. You'll just find someone perfect for you. Whoever we marry will always just be a person. All people are flawed and no one is perfect.

I'm a great CF spouse, but I'm still selfish in my marriage sometimes, even in our "CF life." I am 100% ok with Ronnie's CF. I view CF as a blessing. I embrace the life we have. I think, quite frankly, we probably have one of the best lives around. We are extremely blessed, and I wouldn't change a thing about the life we have. If there's someone that is cut out for the CF life…it's me. To an outsider looking in, I could see exactly where her question originates. If you only see the highlights, I can see why there would be nerves about, "have I found someone cut out for this? Some people seem to be more ok with it." But in reality I am human, and honestly, I am selfish. We have a successful marriage, but not because I am always a successful spouse. The week before Ronnie went in, I knew he didn't feel good. But he had been sleeping in every morning (because he didn't feel great) and one morning I was exhausted, so I just made him get up. I didn't care how he felt that morning, I felt like I needed sleep more. His last hospital stay I hounded him endlessly about when he was getting out because I had about had it being a "single mom". I sometimes wish I had something I had to do to buy me 45 minutes of alone time when Mckenna is being a pill. Some hard days alone with Mckenna during a tune-up I have even felt a little resentful that Ronnie is just "relaxing" while I'm running around like an idiot all day trying to maintain my cool (I should note, that the more rational me knows he's not "relaxing" and that it's hard work and he feels like crap and would rather be home. But the me that's fighting a two year old in a battle over something ridiculous isn't rational! HA!) Ronnie gets out today and my first thought isn't, "oh good, he's all better and feeling great." Instead my initial thought is, "oh good, I need a break…" I know those little tidbits are less than flattering. But I think they need to be shared more often, possibly. Even those of us who are totally ok with CF; those of us who love taking care of their spouse; and those of us who wouldn't change their lives for anything, have their moments. I was made for this life. I was made to be Ronnie's wife. But I am human. And I have selfish moments.

I think it's important to realize there's a difference between being a CF spouse and being human. I think we need to separate CF from most aspects of our relationships. I think we need to not blow things out of proportion just because they have to do with CF. I think we need to teach younger people that successful marriages are always between two imperfect people. I think we need to allow ourselves and our spouses to be imperfect. I think we need to be honest about how we feel, even when it's not flattering so that others understand what marriage is truly like. I think we need to help others learn what they can expect from a spouse and what they should look for in a spouse. I was so thankful for her note. I think dialogues should happen way more often regarding CF relationships. And I think we all need to cut ourselves some slack!

What Brought Me Into The Hole

The last time I was in the Hole for a tune-up was in May. I left after a 25 or so day stay blowing a 73% (with a "baseline" of 75%), but feeling ready to get back to kicking booty. I then had a follow-up appointment about a month later where I blew a 75%. It was at this appointment I set up another clinic visit for roughly 6 months out, on January 6th. I made it my mental goal of trying to stay out of the hospital until then, which would have been a record length of time in-between stays.

Shortly thereafter, I started on an unnamed clinical trial for my specific gene mutation, DDF508.

Since getting out of the Hole in May, I have felt great! My workouts have gone very, very well and I definitely felt more energy throughout the day than I normally do. My mucus seemed very "watery" and I was able to expel it somewhat easily. My breaths were deep and I was moving large amounts of air with each one that I took.

I had very few bumps in the road since getting out in May. A cold here or a sore throat there, but they would last for a day or two at most. I was feeling very good about my January 6th goal.

Things started to change about two weeks before Thanksgiving. I started to slow down. I wasn't feeling bad, just not quite as good as I had before. Still, I was firing at about 90%. I think the biggest factor that led to this slow decline was an injury to my foot. There were days that I wasn't able to put weight on my foot, and therefore, was not able to complete my usual workouts. Not being able to complete my normal workouts is what probably opened the door for CF to outwork me.

You see, I'm convinced that my CF works at the same level, let's just call it level 75, all of the time. It's up to me to work at a level 76 or higher every single day if I want to stay ahead of it. There's no doubt that not being able to complete, or even attempt my workouts, brought me under the 75 level. I know that sounds overly simplified, but you know what, it works for me, so...

Anyway, after a couple of weeks of working below my regular level (mind you that my treatment time didn't decrease, but actually increased in trying to "make-up" for lack of exercise time), I started to feel "off". My coughing increased. My mucus got thicker. My sleep felt interrupted. My energy level decreased. You know, the same old song and dance. I would have 1 good day for every 2 sub-par days. During this time, Mandi and Mckenna were both battling a stomach flu type of thing, so part of me was hoping that my decline was due to fighting their sickness off. If that was the case, I thought, I may be able to make it until January.

That was not the case.

After about 10 days of a slow decline with increased symptoms, I waived the white flag and called in the cavalry. When I finally made it into clinic, I blew a 63%. Not terrible, but not where I need to be. And more important than the number, I wasn't firing on all cylinders and we were all convinced that without intervention, we would continue to watch a slow decline, or quite possibly, a fast one. So, after over 6 months out of the joint, I got booked back in (which by the way, is a longer parole than normal).

It's been 8 full days of antibiotics. After 7 full days, I blew a 69%. I'll take it. It isn't uncommon for me to have no increase or even a slight decrease my first full week. More importantly, I'm feeling better than when I came in, and am looking forward to what this next week brings.

Some hospitals do awesome things.

If this video doesn't make you smile and warm your heart, please, check your pulse. There may or may not be some CFers in purple ;)



Big ups to CHAD for putting this together.

The Support of a (CF) Wife

Many of you already know this, but I have the best and most supportive wife in the world. I can't even begin to explain how much of a relief it is to have the support from my wife during times leading up to the hospital. Our family puts my health first, and obviously, we couldn't do that without her. I just wanted to show (mostly to give my wife the public recognition she deserves) what that support looks like in our family. This support happened to come through text messages as I was waiting at an urgent care for x-ray results requested by my pulmonary team.

I love you honey and your support means the world to me.

Top 10 Tuesday: Best Things About Hospital Stays

It's no secret that Ronnie and I have always embraced hospital stays. They look different now that we have Mckenna, but we are still thankful for them and still have a lot we love about them! (List compiled by both of us)

10. Absence makes the heart fonder - While it totally stinks to not have Ronnie around, it does make me appreciate him and how much he does around the house, for me, and for Mckenna. So in that regard, it is a nice reminder of how much I love and appreciate him!!

9. Adventures - Mckenna and I have started using hospital stays to enjoy time together on adventures around town. We have hit up several fun kid spots around town and I think we both dig it.

8. Family time - Since my mom, step-dad and brother live down here in Tucson, I don't get to see them nearly as much as I'd like to. When I'm in the hospital though, I'm only about 15 minutes away from them and see them more than they'd probably like to :)

7. Family time part II - Even though my in-laws (Papi and Nana) are only about 45 minutes away from our house, we don't see them as much as we'd like to (if you can't tell, I'm a big family time kind of a guy). When I'm here in the Hole, Mandi and Mckenna "move in" with Papi and Nana which makes me feel a whole lot better about my time away. I know Mandi loves being around her parents and I'd bet that Mckenna loves it even more.

6. Home cooked meals - I often get home cooked meals courtesy of my wife when I'm at home, but there is always something to be said for my mom's classics. When I'm here in the Hole, someone brings me dinner almost every night and it's usually something made by my mom. Some of the meals brings me back to my childhood, which for me, is a good thing :)

5. FaceTime time - It's not often that Mandi and I have any reason to FaceTime when I'm at home, but we have all of the reasons in the world to FaceTime when I'm not. I absolutely love to chat with Mckenna on FaceTime because she always does something to make me smile. From holding the phone super carefully as to not hang up or giving me 102 kissies during the course of the call, I'm usually smiling ear-to-ear.

4. Rest - I feel selfish saying this, since I know Mandi experiences the opposite, but it is nice to experience unencumbered rest while I'm here in the hospital. I don't feel guilty to just lay in my bed or sit in a chair and not do anything. I tell myself that it's an important part of the tune-up process, and whether that's true or not, I take full advantage of it.

3. A chance to reset - Ronnie had been "off" for a few weeks before going in. I am so thankful he has a place he can go, to get better, and "reset". He always comes back the man I know and love and full of energy!

2. Hospital traditions - While Ronnie and I can't do all our hospital traditions as much now that I don't stay down there with him, we still get the chance to do some (Dunkin Donuts breakfast, listen to radio podcasts, etc) when I go down to visit. It's really nice to sneak in a few of them here and there.

1. Leaving - Even though it's a place we don't hate, nothing feels better then leaving the Hole!!

Update from the Hole

Thought an update was in order after 18 days in the Hole...

This stretch has been a little longer than my recent stretches, but I also came in sicker than I've been for a while. Not only "CF sick" in terms of increased cough, sputum production, etc, but also "sick sick" with a fever, sore throat etc. My PFTs followed suit and I blew some of the lower numbers I've had for quite some time. It wasn't even with a second thought that the team knew I needed to be in here.

My first week in here was very similar to most of my first weeks in here. When these antibiotics first hit my body, it feels like I'm literally being hit. Sore joints, sore muscles, aches and pains are very common my first week here. It's become par for the course as I get older and something that I'm mentally prepared for.

After 10 days in the Hole I did another set of PFTs. I came in blowing a 57% and after 10 days of treatment, I blew a 60%. I had to quickly get in the right frame of mind after blowing that number. More so, I wasn't feeling all that much better. After the initial disappointment that lasted about 10 seconds, I thought back to other times in here that my numbers actually went down in the first week. The times that staying in here 30 days was coming place. I did a quick perspective exercise and was feeling good about it all at the end of the day.

In this third week, I'm happy to say that I'm still trending upward. I'm not up to my magical "baseline number", but more importantly, I'm not back to me yet...but, I'm getting there. I blew again yesterday and blew a 66%. For me, nothing to brag about, but also an encouraging step forward to getting out of here. I'm starting to clear out some of the old stuff that's been hiding out deep inside my lungs and it feels like I can take deeper and deeper breaths each day. I'm hopeful that I am truly in the homestretch.

My workouts have been getting better as well. I make sure that I'm taking a brisk walk daily and I have even managed to get some runs and stair work in while I've been here. On Sunday, I was able to run for 30 minutes straight around the hospital. It wasn't easy, but it felt great after I was done.

Anyway, just a quick update for those of you who were curious. I thank you for all of your prayers, notes and support. I'll be out of here soon.

What Brought Me Into The Hospital

What brought me in the hospital this time, is basically what brought me in the hospital last time - the inability to fight off whatever cold/flu/virus/"insert name here" that I was battling. When I came in the last time, January 7th, I had been fighting a cold since December 15th. When I came in this time, May 3rd, I had been fighting a cold since about January 23rd. Now, that's not to say that I have felt terrible for the last 3 months, that's certainly not the case, but I've probably only been on top of my game about 3 weeks total. It's been full of days (and nights) of throat clearing, nose blowing and throat lozenges sucking that finally made it's way to my lungs.

When I was released from the Hole on January 21st, I blew a 75% FEV1. That's the highest number I've seen in the hospital since 2003. I was VERY encouraged especially since I was coming off a terrible cold over the holidays. I was looking forward to working my booty off and seeing if I could push that number a little higher. Unfortunately, I started sniffling again about 2 days after my release. I was still able to workout, and of course do all of my treatments, but I wasn't able to attack my body with the kind of effort that I usually give. One and a half months later, I had a follow-up clinic appointment - I blew a 63% FEV1. I was certainly disappointed, but not at all shocked. Exercise is what keeps me at the top of my game and I hadn't been able to exercise like a normally do (a lot more walking than running). The team was a little concerned and asked if I needed some sort of intervention and I declined thinking I was on the mend of whatever I was battling.

I started Cayston shortly thereafter and had a few weeks that I felt great. I was running like normal. I was able to push myself. I didn't have a sore throat. My snot wasn't green. I wasn't going through a box of tissue a day. I felt good.

Fast forward to the third week in April. The wheels started coming off the bus. I started up again with a stuffy nose, sore throat and coughing, but I was confident that it wouldn't last long. I was wrong. The fourth week of April I was worthless. I basically laid in bed or on the couch all day doing treatments and then I'd be in bed by 8:00pm every night. I was trying like heck to fight off whatever it was I was battling. I found myself with less and less energy, and worse, symptoms becoming bigger and more pronounced. It all came to a head when on the night of April 27th, I coughed up quit a bit of blood (1/4 cup to 1/2 a cup). I then knew that whatever I had was not just isolated to my head and sinuses.

I called the team on that Monday, after coughing up more blood, to see what they wanted me to do. To be honest, I was calling to see if we wanted to start an oral antibiotic because I really didn't want to go back in the Hole. My pride was getting in the way since it had only been three months since I was last in. After describing my symptoms (blood, pain, shortness of breath, fever), they recommended a lung x-ray to make sure nothing major was going on. Thankfully, the x-ray came back negative, and the plan was to start an oral and inhaled antibiotic and keep them updated. I only continued to go downhill. (I ran a 101 to 102 fever for the entire week)

I fought like crazy on Monday, Tuesday and Wednesday, but on Thursday, the white flag was waived. I knew I needed help. Whatever it was that was going on, I couldn't beat it down "on my own" (its never actually on my own). I swallowed my pride and I called the team. They set up a clinic appointment for me on Friday (May 3rd) and I also did some PFTs. I blew a 57% FEV1. That's a far cry from the 75% I blew a few months earlier. We all agreed that a stay in the Hole was necessary.

So here I am. Writing to you from my bed at UMC Hospital. Doing what I need to do for my family. Not something I wanted to do, but in the big picture, it's not about me, it's about them. If I needed to live here to be able to have the chance to spend more time on this earth with my wife and daughter, I'd do it in a heartbeat. Now, it's all about doing what I need to do in here to maximize my time and hopefully my health.

I raised the white flag last week. I'm looking forward to waiving the checkered one soon.

A Tough Choice

Hey Ronnie, I know we've never met, but I have a lot of respect for you and no one better to turn to who could give me some advice. My son [Name Withheld] is 18... the magic age where I no longer have control. His PFTs have been really low for a couple months now, 65% today. Docs think we've mucked around enough and really want to admit him for a clean out. He will not give his consent because it will mean missing the first game of basketball season. Basketball is [Name Withheld] love and this is his last season with this group of boys that have played together since 2nd grade. I know this is very important to him, but waiting to treat can mean perminent lung damage.... I know you know the routine. I was hoping you had some words of wisdom that would help me help him. He has always been a very compliant kid, and knows his disease quite well. Sometimes there is resistance, but he usually makes the best decision in the end. This time Im not so sure. What is it like to be an 18yr old boy with CF? As that boy once yourself, what would you have wanted from your mother... should I push, or let him makes a dicision that could impact his health for years to come? Thanks for listening

......

That's a tough one for sure...

I can only think to give you advice through a story. My freshman year of high school, I earned the spot of a starting running back during my pre-season workouts. I worked hard all summer and leading up to the season all I cared about was football. I then had a check-up about 8 days before the opening game - my lung function had dropped. I was given a "choice" by my docs and by my mom - go in now for a short stay, work my butt off and be ready to go for the second game of the season, or delay the stay, possibly get sicker and end up being forced to go in and miss 2, 3, 4 games or more. I say "choice" because my mom had a good way of getting me to choose what she ultimately wanted most of the time. I think it was a healthy balance of love and fear that I had for her that was the trick 

I chose to go into the hospital and I ended up missing the first game of the year. The coach stood behind the decision of of putting my health first and held my starting spot for me upon my return. I worked my tail off in the hospital and ended up making it a very short stay. My lung function shot up and I felt great. The dangling carrot of that second game was out there, and for me, it worked! I went on to play in every other game that year.

Looking back on my regrets from when I was that age, I never once think about that decision. What I do think about are the times that I didn't put my health first. I have the "what-ifs" and "if only I would haves" that will pop up from time to time.

On the continuum of time, the start of a basketball season is but a speck of dust. Admittedly, it looks like a mountain range to your son, and that is completely understandable. I couldn't fault him for either decision that he would make as it's much easier to be a Monday morning quarterback sitting here today 

I can tell you this, the people in my life now are VERY thankful for the times that I put my health first. When I compare that first football game of the season to my wife's kiss or my daughter's snuggle, it really puts into perspective how insignificant the game, the sport and that time really was.

At 18, you're not only making decisions that will affect your future, but the future and happiness of others.

So, to finally answer your question...As a son, I always expected my mom to be loving, respectful and honest. Kids are always more open and responsive when their parents show empathy and not "I'm the boss" in this situation. (With that said, may I remind you that you are in fact the boss if he still lives under your roof and you're paying the bills).

Hope that little story helped prepare you for your conversation with him and please let me know how it turns out. If there is any other question I can answer or anything else I can do, please let me know!!