Thankful Thursday - There Will Be (NO) Blood

Know what time it is? It's thankful Thursday time! We checked into the Hole two weeks ago and it's time to celebrate a little thankful Thursday! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. as I mentioned, I no longer have the "linky tools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for my loving husband. He has been such a trooper. The Progesterone shots have left my butt feeling like there are GIANT Charlie Horses in each (zone) where he sticks me. He, being the loving, awesome husband he is, has been rubbing my sore butt for hours these last few weeks. I don't know who will be more excited for these shots to be over at week 8!

I'm thankful for my Grammy. She taught me a WONDERFUL trick - the rubberband trick. Since I'm still incredibly bloated (I think it's still maybe getting worse, they say it will start to get better at some point...just in time to actually start showing), she told me the most wonderful trick to make my pants "fit". You feed a rubberband through the button hole on your pants, and put both ends around the button. It makes it so I don't have to feel like a stuffed pig trying to get my bloated belly into my all too small waistband. I love the wonderful tricks that my Grammy teaches me!

I'm thankful that God answered our prayers and we're pregnant. This was on my list last week too, but I think I'm allowed to do it two weeks in a row, right? Pretty sure it merits two weeks in a row. I am just so thankful that we are pregnant and praying that we will be holding our baby(ies) in 9 short months. I never knew I could love little sesame seed(s) so much. I am so thankful that God has blessed us with this(these) baby(ies)!!

I'm thankful for exercise bikes at the hospital. Our hospital provides exercise bikes in the room if you want one. And man has it been nice. I'll throw on some sneakers, and sit and pedal while watching TV with my hubby. It's a great way to get my heart rate up a bit, tone my legs, and make my lungs work - plus is helps ward off the bed sores I probably would otherwise get while Ronnie's in the hole...seems like all I do at night is lay in bed!

Ronnie's List:

I'm very thankful that Mandi's belly is getting bigger! I know that it is no guarantee that we are still pregnant or that this whole thing is going to go off without a hitch, but it sure feels good to see it growing. Plus, I happen to think that there is nothing sexier than a pregnant woman, especially when that woman is my wife. I don't know what it is, but I've always been so drawn to that belly. I think it's because of the vast respect I have for a woman that can carry a human being inside her belly. Crazy!

I'm thankful that for the last couple of days, I've woken up feeling a little bit better than the day before. I never quite know when it's going to happen here in the Hole, but it's always a good sign. Barring any unforeseen circumstances and assuming I continue making the strides that I'm currently making, I fully expect to be outta here next week. I'm hopeful that the way I feel and my PFTs warrant a release (with the most important thing being the way that I feel).

I'm thankful that there has been no blood. I've gone on run/walks for the past two days, and so far, no blood. I told my doctors that my goal for this week was to try and make myself bleed by really pushing my lungs. I can't say that I've kicked it into overdrive quite yet, but the fact that there is no blood so far is a good sign! Let's just hope that this trend continues.

So, what are you thankful for today?

First Hospital Run

Pulmonary Function Test (PFT) in Hospital

I took my PFTs yesterday for the first time while in-house. The last time I took them was right before I came in and I blew a 75/60 or so. Well, they could have gone better, but they could have also gone worse. They pretty much went neither. I blew a 71/60. I wasn't expecting much better so I'm not disappointed. With the coughing up of blood a couple of days ago and my inability to get my exercise on point, the fact that my lungs are a bit tight is not surprising to me. You can hear the tightness in my cough even (if you're so inclined to watch the video below). It's hard for me to take a big, deep breath in and it's tough to really blast it out- hence the lower than normal numbers. No worries around here though! This only motivates me to get out of this bed, put my running shoes on and get to work.

It's not the numbers of the tests that matter, it's how I respond to the numbers of that test.

Learning the Ropes of Pregnancy

As many of you read last week, we're pregnant! And as you can imagine, we're thrilled. We currently are the proud parents of 1 or 2 (we find out in a few weeks) little "poppy seeds". It's so crazy how much I can love something so tiny! I feel completely fine still. No morning sickness (think that doesn't kick in for another week or two). I'm still bloated from the egg retrieval and transfer, but my tummy has gone down quite a bit. I am feeling pretty tired, but who knows if that is from being pregnant, or sleeping on a cot in a hospital room. I've been pretty hungry (not unusual for me in general though). I've been burping more? Not sure if that's actually from anything...just an observation.

I am doing everything I can do get educated. I've started reading anything and everything about pregnancy - including, but not limited to, what's happening in my body, what's happening with our baby(ies), how much exercise I can do, what kinds of exercise, what to eat, what to avoid, you name it. And let me tell you, my head is spinning. I am so nervous that I'll blow it by doing something wrong, eating something wrong, using a product that is wrong, yadda yadda yadda! Every time I go to eat something, use something (like lotion) or do something (like work out), I first google if I'm allowed to eat, use, or do whatever it is. (Anyone have any helpful hints of how they navigated this period in their lives...does it get easier or will I be a paranoid, psycho forever?)

I thought I'd take today's blog to share some interesting findings - ones that have shocked me the most:

1. TOBI - Ronnie's on TOBI this month. And you all know, when you use TOBI, it seems to fill the room with a thick haze. I sat next to him while he was puffing away, and then lightbulb, "I wonder if this is ok for ME to breath in...second hand smoke is bad, what about second hand TOBI?" So I googled it. GULP. A bunch of articles warning pregnant woman about taking TOBI, harmful to fetus, heating loss caused in utero. UMMMM EXCUSE ME. That freaked me out so bad I now banish myself from the room when Ronnie's is doing TOBI. Who knows what it can do second hand, but I'm not taking that chance.

2. Tea - Not all caffeine free tea is safe to drink? What? How does anyone know this stuff? I have now just stopped drinking tea altogether because I can't keep all the hot drinks straight, and I can't even enjoy it as my brain questions if it's causing harm or not.

3. Albuterol - After I read about TOBI, I started googling Ronnie's meds like crazy. Albuterol, in animals, was shown to cause birth defects to babies apparently?! Again, who knows if second hand it even matters, but NO THANKS. Looks like treatment will not be spent together for the next 9 months. I will say though, the Albuterol at least doesn't fill the whole room with a cloud of it's baby harming effects (probably a little dramatic!).

4. Deli Meat - "MMM a sandwich sounds good." I thought last week while trying to decide what to have for dinner. Google. Ok, no sandwiches? Looks like deli meat isn't recommended (I've read mixed feelings on if it's deli meat in general, or if just deli meat that you don't heat WAY up isn't good). Regardless, I'll stay away from deli meat! Goodbye Subway - we will meet again in 9 months.

5. Exercise - Exercise is good. Not so much of a novel fact. But I'm trying to wrap my head around, so I keep trying to read more articles. I am still nervous that someone I will shake the baby(ies) out of me (sounds stupid even typing it). I am nervous that somehow I'll cause myself to miscarry. But I have read a ton, and it looks like by all accounts, unless you're a high-risk pregnancy, that exercise is actually advantageous. So I've gotten back into the exercise saddle (slowly). I still have to be careful, since I still have bloating, it's likely that my ovaries are still swollen from the egg retrieval, and they tell you to take it easy, or you could get ovary torsion (unlikely, but not good). I have started walking daily, and we got an exercise bike in Ronnie's room (hospital provides them), so I've been riding that quite a bit. It feels good to be back in the exercise saddle after not doing anything for 4 weeks (ever since I've started the stim. meds I couldn't exercise).

So there you have it. There are some of my findings over the last week. I will say this though, while it's a little overwhelming trying to learn what I can and can't put into my body for the next 10 months, I couldn't be more thrilled. It's not a matter of being concerned with having to change what I'm doing, it's just me wanting to do everything right for our little poppy seed(s).

I've Sprung Another Leak!!

**Don't watch if the sight of blood makes you queasy**

Thankful Thursday - This one is pretty obvious

Know what time it is? It's thankful Thursday time! We checked into the Hole one week ago and it's time to celebrate a little thankful Thursday! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. as I mentioned last week, I no longer have the "linky tools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm SO thankful that my God is one that is faithful and answers prayers. We have been praying that He would guide us through our IVF process, and man did He come through big time. A smooth diagnostic period, Ronnie having swimmers, and good little swimmers to boot, just the right number of embryos, and pregnant the first cycle. I am so thankful that this process isn't in my control (holy smokes, did you just hear this type A actually say that?!) and that I have a God who is so good, who's guiding this! I am so thankful to be blessed with this baby/these babies!!

I'm thankful for butt rubs. Any lady that has ever done progesterone shots (or anyone who has had oil-based shots before) knows what I'm talking about. Those suckers start to leave a lasting impressions after a few weeks worth. My butt has bit lumps and bumps of oil trapped (and some gnarly bruises) and it feels like heaven to have my loving hubby rub my sore spots to get some of the oil broken down and out of there.

I'm thankful for coffee. Gasp. "You're drinking coffee?!" you're thinking. No. I am not. And that is why I'm thankful for it. I miss it like mad right about now. As many of you know, weekend mornings while Ronnie is in the hospital are Dunkin Donuts mornings. And the smell of coffee in the morning makes my heart happy. Unfortunately I can't partake, but you better believe I'm going to pound the coffee in approximately 9 months. I am so thankful for this tasty drink. Have an extra cup for me this morning!!

I'm thankful for hospital stays. The hospital is always a nice time for Ronnie and I to relax together and hang out with his family. Sure we still work, and we can get a little cabin fever, but I always enjoy the quality time that hospital stays bring. I'm thankful for hospital traditions and fun experiences. We always leave with many, many good memories and some funny stories. I'm thankful that we can enjoy each other, and life, anywhere.

Ronnie's List:

I guess my first one's a little obvious, but I'm really thankful that were pregnant! We're approaching this cautiously optimistic as we know nothing is for sure until were holding our baby (or babies) in our arms, but for now we're just in the celebrate this miracle. We heard all along that this would be quite the journey and I'm just so thankful that our road was pretty smooth. I don't think it could have gone any better and we're just praying that in nine months or so the Sharpe clan gets a bit bigger! We can't thank you enough for your thoughts and prayers, we literally felt every single one of them.

I'm so thankful for the research teams out there working their butt off to make the lives of my friends so much better. As I'm sure you've heard, the pharmaceutical company Vertex just announced very positive results from their phase 3 drug study of the compound VX770. This little blue pill did very well and we're all excited for the future. It is shown to increase lung function, decrease exacerbations, increase weight and a host of other positive things simply by opening up the chloride channel on our cells. Now, I must point out that this drug is for a specific mutation that effects about 4% of our population, but they're very optimistic that this is the start to something great for the entire community! I'm super excited for my friends with the G551D mutation and I can't wait until this drug is released in 2012. Let's keep our fingers crossed that the FDA gets on the ball and approves this thing.

I'm thankful that after a week in the Hole I've turned the corner and improving bit by bit everyday. You never quite know how things are going here, but I'm confident I have nowhere but up! I'm going to start testing my lungs pretty soon here by running laps from a hospital and sprinting up the staircase. I'm hoping not spring a leak aka hemoptysis aka my lungs bleeding, but I figure there's no better place to do it than in here. I'll be taking PFTs on Monday and I'm very hopeful that they'll be up from a week ago. I checked in here with an FEV1 of about 60% and I'm hoping that by the time I'm out it will be in the lower 70s. Maybe I'll even shoot for 75%! Sure wouldn't hurt to try.

Pregnancy Test

We wanted to give you a little update. The hospital has been going very well. Ronnie is starting to feel a little better......OK JUST KIDDING. I'm sure most of you are tuning in to hear the results of our beta pregnancy test. So should I just cut to the chase or tell you the long, drawn out story of getting the results and then tell you? What's that you said? The long version with the results at the end. Ok!

Kidding again. I'll cut to the chase...we're pregnant!! Yup, that's right! All your prayers have paid off. We could not be more thrilled. In fact, I feel like a giddy little school girl every time I say the words, "we're pregnant!!"

So now here's the back story. We had a little inkling that I was pregnant Monday evening, when I could no longer stand the wait and I cheated and took a home pregnancy test around 6pm (see video below to watch us get the results from the home test). They say not to take a home pregnancy test because A. It's too early, so most likely it will show "not pregnant" and B. The trigger shot is the same hormone that you test for with pregnancy tests (test too early and you could get a false positive from the hormones being in your system from the trigger). I waited as long as I could, and then caved on Monday night (when supposedly the trigger shot would be out of my system. They say it takes 7-14 days...and Monday was day 15). Anywhoo. We got a positive pregnancy test (again, see the video to watch our reactions). We were excited, but trying not to get our hopes up, since a false positive was a possibility.

I took ANOTHER home pregnancy test Tuesday morning (cut me some slack...it was a two pack and I wanted to see if the first was a fluke). It too came back positive. So after that, I began feeling like a positive pregnancy test from our blood draw was a very real possibility. I felt confident the whole drive back up to Phoenix to my doctor's office. I felt confident until I walked through the door of the doctor's office. Suddenly, I could puke...and no, not from morning sickness, that hasn't kicked in yet. I was so nervous. "What if it was a false positive?" I thought. "I really blew it this time. I didn't manage my expectations AT ALL," I kicked myself (not literally). The blood test was over before I knew it. "That's it?!" I thought. "Our fate rests in that dinky little vial!?"

The drive back to Tucson felt long. I knew as soon as I got back to Ronnie, we would call and have the results. "They have to be positive." "They don't have to be positive" I went back and forth. Finally, after a 2 hour drive, I arrived at the hospital. We sat down together on the bed, dialed up the doctor, and prayed for the best. "Congratulations," Our doctor greeted us. "YEAH?!" We said. "Yeah, congratulations, you're pregnant. Your beta is 59.1, so you're definitely pregnant."

We can't thank you guys enough for all your prayers, well wishes and love these last few weeks. We felt so supported and knew that even if the results weren't what we hoped for, we'd still feel blessed thanks to all the love and support!

**Now, we do have to dampen this with "It's very early on." Most people wait to tell people that their pregnant until further into their pregnancy - once they're in the "safe zone". But since we've promise to keep you posted with the whole IVF process, we're keeping you up to date with the results too!! Please continue to pray for a continued, healthy pregnancy!

Day 5 in the Hole

The Waiting Game

Tomorrow's the day. The day that has seemed to approach in slow motion. The day that I have waited for for the last 8 weeks....shoot the last 24 years. Tomorrow is the day I get my blood drawn to see if I'm pregnant or not. Ahh...just typing those words makes my heart race and my palms get sweaty (sorry keyboard!)

Ronnie wanted me to post today to share my thoughts this last week - probably because he wants me to have something other than him to use as a sounding board for my ramblings. I will share my thoughts with you, so that if you're ever going through this, you know that it's "completely normal".

I have felt just about every emotion in my arsenal of emotions over the last week...and thanks to these hormones I'm still injecting, I've felt all of them back to back like a bipolar maniac. The beginning of last week I was doing well. My belly was still super bloated, the recency of the transfer was still fresh in my mind. Those little embryos felt so real, so close. I KNEW that they were both in there. I knew they were just floating there and felt like if I talked to them and if I prayed enough, I could convince them to stay (or convince God to let them stay). I was sure it was going to work. The pregnancy test felt so far away, but I wasn't impatient because I KNEW what the result was going to be. I KNEW I'd be pregnant.

As we got further into the week, that certainty and the closeness of the transfer, all started to fade. I couldn't picture my babies inside me as vividly. Doubt began to creep in. What if I'm supposed to be feeling more? What if they don't stay? What if I'm not pregnant? I began researching on the internet like crazy. I googled how I should be feeling. I googled how others felt. You know what I found? I found everyone's symptoms, each different from the previous. Some people with no symptoms at all. "This is Stupid," I thought. I would vow to stop googling. Only to start researching again a few hours later. I would vacillate. I would go from confident on minute: "Of course I'm pregnant. It only makes sense. The odds are in our favor." To completely scare: "What if I'm not pregnant? What would be the next steps?"

To add to the nervousness and emotional roller coaster, my bloating started to get better. HOW CAN THE BLOATING GET BETTER? Everything I'd read is that my bloating would get worse if I got pregnant. Granted, my doctor and nurse said that I had very mild OHSS and that it would likely get better a few days after the transfer, but still. I couldn't help but let it mess with my head. Now, I still have some bloating - my mid section is a solid 2 inches bigger than normal - but it's not as bad as before, and it's certainly not worse. I have continually reminded myself that my doctors thought that I'd likely get better soon, and I've been praying like crazy to not allow me to become more bloated and uncomfortable. Could it be that this is just God answering my prayers? I continually reminded myself that He was likely just guiding this process like He has this whole time.

SO that brings us to this weekend. This weekend has been the continuation of the roller coaster, but I've been slightly more confident. I've found myself less anxious - although not by much. As Tuesday draws nearer, the wait feels more bearable. "I can wait a few more days," I tell myself over and over again.

All in all, I can easily say that this has been the longest 8 days of my entire life - and we still have 1 left. Thanks for all the love these last few weeks - we can't thank you enough! We'll let you know in Wednesday's blog what we find out!

Sometimes you've got to feel worse...

...before you feel better (and sometimes you look like you've gotten stung by a swarm of killer bees).

Thankful Thursday - Welcome to the Hole!

Know what time it is? It's thankful Thursday time! We just checked into the Hole and it's time to celebrate a little thankful Thursday! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. as I mentioned last week, I no longer have the "linky tools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful that I'm feeling a little better. I still walk with a limp (thanks to the continued shots in the butt, twice a day, and the bloated belly), but I am thrilled to be back to my old self. My stomach is no longer super upset and I'm able to sleep through the night with fewer disruptions. I'm a big baby when I don't feel good - so I'm sure Ronnie's even more thankful than I am that I'm feeling better :)

I am incredibly thankful that we have been blessed enough to go through this much of the IVF process. We have been so fortunate by how smooth everything has gone. Having a few more embryos, so we'd have a few to freeze, would have been what we thought was "ideal"...however, I'm so thankful that my God knows what's best for us.

I'm thankful for caffeine free tea and hot chocolate. I have cut out all caffeine since starting this IVF cycle (December 24th), and for a coffee drinker it seemed like a HUGE task. However, I have actually enjoyed trying new teas and having an excuse to drink endless cups of hot chocolate. I am thankful that there are hot beverages to drink in the winter sans caffeine - or I would have felt lame-o not having something warm to drink in the morning.

I'm thankful for my mother-in-law (yup...you read that right!). Ronnie's mom is great at a lot of things, but one of her strongest contributions to our lives is her love and support while Ronnie's in the hospital. Since we go in for our tune-ups 2 hours away from home, but right in Ronnie's family's back yard, we rely on them A LOT. His mom makes dinner most nights, spends time with us, and is always looking for ways to spice up the stay. I'm looking forward to being taken care of for the next 3 weeks, and I'm so thankful that she wastes no time to help. Knowing that we were going in today (last minute) she packed up all the coffee making supplies, a little table, table cloth, silverware, paper plates, coffee mugs, etc etc. I'm so thankful to have such a great role model of how to take care of someone while they're in the hole!

Ronnie's List:

As I mentioned yesterday, I'm so very thankful that I checked into the hospital without being too sick. I had to push my stay off a little bit, but according to my PFTs it hasn't done too much damage. I still haven't been able to exercise at my regular pace but I'm hoping that changes after about a week in here. I'll start to push myself pretty soon to make sure that it doesn't cause anymore bleeding. Really I'm just thankful that I'm so close to the opportunity to exercise again!

I'm very thankful that Mandi is feeling a little bit better each day. Her back is tense and the muscles around her spine are cramped, but it's nothing a massage from her hubby can't fix. We are now enduring the waiting game of finding out if we are pregnant or not, but we're thankful that we at least have the opportunity to be in that game!

I'm thankful that my wife has the ability to make the hospital feel like home even more than I do. By the time I got the car unloaded she had already made my bed with new pillows and new sheets that she brought from home. The coffee station was set up, the toiletries were out, the room was rearranged and the boxes to transport stuff were neatly stacked in the closet. It's not easy to make the Hole feel like home, but she manages to do it every time.

And finally, I'm thankful for the birthday present that Mandi gave me. I haven't been able to use it all week as my computer's been in the shop, but I was finally able to set it up yesterday. It's called Dragon Dictate and it gives me the ability to speak my blogs instead of type them. I'm a very slow typer, I do the chicken peck, and I spent half the time rechecking my work. Now this program isn't 100% perfect but it does but it definitely saves me time (You'll probably see some silly grammar or words on these blogs from time to time because of it). Thank you wifey!

Hospital on the Horizon

Today or tomorrow I'm expecting a call from the hospital. I knew this day was coming and I'm actually excited to be able to get in and get tuned up. As many of you know, I've had some issues with bleeding that unfortunately have made it almost impossible to exercise or even do my treatments at the level that I'm used to. After three weeks or so of this, you could understand that my lungs definitely feel different and more tight than there used to. Putting off hospital stays isn't something that is commonplace for me, as I understand the importance of putting my health first, but under the circumstances I'm able to forgive myself. I've been needed around here in the last couple of weeks and in my mind there really wasn't any way around it. Not only did I have to be around to do my part in the IVF process, but I also had to be here to assist Mandi in hers. And after the episodes we experienced after Mandi's egg retrieval, I'm sure thankful that I was around. There certainly are some times in life where you have to make tough decisions. In this case we're thankful that in the past three weeks I haven't felt like my health has taken a major blow.

So now it's just a waiting game. My CF team called a bed in for me today, but none were available. Apparently my hospital was on what they call “code purple”. Basically what this means is that they are not accepting any patients that are trauma cases. Believe me, I'm not sad at all that I don't qualify to be admitted. It actually worked out pretty well as I had a lot of catching up to do today as I just got back my computer and had fallen a little bit behind in my e-mails. I'm hoping that I can get in in the next couple of days because the sooner I get in the sooner, I get out. I'm also hoping that once I get in my lungs respond well to treatments and I am able to start exercising quickly. Obviously, we need to figure out the source of the bleeding and possibly do something about it before I'm really able to push myself. I'm counting down the days before that happens.

I'm also facing another interesting transition heading into this hospital stay. For the first time ever, I'll be seen by an adult CF team. My hospital was forced to develop an adult team as the adult population at my clinic continued to grow. It is understandable, as adults have separate issues, but that certainly doesn't mean transition will be easy. I've been building a solid relationship with my CF care team for the past 31 years and that isn't something that's easily replicated. It's going to take time, trust and an open mind to develop the kind of loyalty to this new team that I have for my old one. Luckily, I still see my peds team in clinic and they'll be updated with how I am doing. I'm actually looking forward to working with this new team as I really think my hospital has a good opportunity here to build a good adult CF program from the ground up. I'm looking at this as an opportunity to be part of something new and hopefully something big. Wish us luck!!

Trusting in His Will

First of all, happy belated V-day to all of you lovebirds out there. Mandi and I had (and I quote myself) "a day just like any other day, only today I got you flowers". Mandi said it was "perfect" therefore, I shoot, I score. Anywhoo, as most of you probably know, we had our embryo transfer on Monday and now we go into the waiting phase of this ever so lovely IVF game. I know that Mandi shared with you guys some of her feelings so I wanted to do the same. I'm not a big "feelings" guy, but many of you expressed how helpful it is when we really share our mindset throughout this whole process. I figure it can't hurt anyway.

Let me set some background. From the very beginning of this IVF process, all we've ever heard was "you guys are going to do great". This I'm sure was for a multitude of reasons, but it often came back to Mandi's age and the fact that, as far as they could tell, she had no infertility issues of her own. You would have thought that this was all just a formality and we could start decorating the nursery after our very first appointment. I can tell you this (and I think it probably rings true for a lot of women out there), when you have a wife who may have trouble managing her expectations, it's actually not what you want to hear. Since the beginning of this whole process I've been very aware of the fact that we could very easily get ahead of ourselves only to be hurt and let down in the end of this. The fact is, when going through the IVF process, couples have a better chance of "failing" than they do succeeding. Our doctor is one of the best in the state (statically speaking) and he still only turns in a 67% pregnancy rate, and please notice that doesn't say live birth rate. Needless to say, the odds were against us.

Knowing the struggle and heartache that could come upon us throughout this process we knew that we needed someone to lean on. The great part is that we're both blessed with incredible families and happen to be pretty connected with a very loving and embracing online community full of peeps that we have had the privilege of getting to know these last couple of years. Having those type of connections are great to have in our back pocket, but we knew we needed someone that was always going to be available for a chat or had a big enough shoulder for both of us to lean on. And thank God, we knew just the guy...literally, thank God.

We've turned this entire process over to Him. He knows the desire of our hearts, but the fact of the matter is, His desire is always perfect and ours is not. We've been in prayer with Him daily just asking that His Hands be all over this thing and that He would grant us a peace that passes all understanding no matter what the outcome. Now, it's much easier to throw out prayers and write blogs about this topic than it is to actually live it out. I think Mandi eluded to that a bit when she shared with you her moment of just needing to be alone in the bathroom after we got our embryo results. The great part about it is that we know we can't rely on our own strength to get through this, no matter what happens. No babies will be extremely tough. Babies will be extremely tough. I often hear people say "God will never give you more than you can handle". This is not only NOT in the Bible, it's just simply flies in the face of a sovereign Lord. God will give us more than we can handle if for only the fact that we're reminded that we must lean on Him and draw from His strength to get through it. If we were never given anything "too big" for us, than what's the point of having a Savior?

Point is, I'm sure glad we handed all of this over to Him. When the doctor showed us a sheet full of embryos that "didn't make it" I felt like all of my strength had been taken from me. The old expression "wind out of my sails" couldn't have painted a more perfect picture. But, just as quickly as I felt that feeling, a new and much more powerful sense took over, a sense of peace. And clear as day, and almost in an audible voice in my head, I started to hear a prayer that Mandi and I had prayed literally every day since this process began. "Lord, please provide the exact number of embryos that you would like us to have". We knew that number could be 10 and it could be 0. I then nodded my head and said to Mandi, "He wants us to have two". Here's the thing, He may provide more later and He may not, but right now I believe with 100 percent certainty that God provided us just 2 embryos out of the original 15 because that's exactly how many are perfect for us right now. My God doesn't make mistakes.

We could also come out of this whole process with no babies. That will of course be another blog for another day were that to happen, but I'm very comforted in another truth that I know about God. My God doesn't waste pain.

Embryos on Board

Yesterday was the day - but do not be afraid by the lack of posting :) Everything went very well, I just came home and laid right on the couch, and, truthfully, penning a blog wasn't so much a priority.

Yesterday at 2:30 our embryo transfer was scheduled. We were delayed by a few hours, and ended up doing the transfer around 4:45. They brought me back into the office's OR, had me put on a gown, booties, and little hat, and Ronnie put on a full body jumpsuit thing (our IVF lingerie), which made him look more like he was clearing toxic waste than makin' a baby. We waited for our doctor to come in to talk to us about our embryos and the game plan for the day. He pulled out a sheet of paper full of scribbles and began to unpack what it held. "You had 15 embryos. Now you have 2, maybe 3. The rest stopped developing around 8 cell embryos." My tummy sank. How could we lose so many? I tried not to feel sad or get choked up: "he did say we had 2 to transfer today, after all," I told myself. After discussing the babies we were putting back, and the 3rd they'd watch overnight (which would likely peter out also), he left the room. I jumped up to go to the bathroom to process alone for a minute before having to discuss with Ronnie. I was so bummed, but trying to just focus on the fact that we had two to put back. Then it hit me. Maybe this was God answering our prayers. Our primary prayer through this process was that he would provide just the right number of embryos. We were going to use through all of the embryos we had - even if it meant 15 kids. It hit me that I shouldn't allow my mind to run through all the "what-ifs" and "to do's" if these two didn't take. Instead, I should take a few minutes to thank God for answering our prayer, even if it didn't make sense at this very moment.

So I emerged from the bathroom with a new 'tude. Excited. Ready to let these two little embryos make themselves at home in their happy mommy's tummy (no one likes a mad, bitter, worried mommy anyways, right?) Ronnie and I chatted about our thoughts on the embryos we lost, and the 2 we were transferring in a few moments. He shared my thoughts exactly.

A few minutes later we were making our way onto the bed where it was going to happen. I have to admit, I never pictured getting pregnant on a bed like this. In my mind there was never me, my husband, and 3 additional people around. Certainly no one would be wearing the clothes we were wearing. I never pictured it this way, but it was perfect! Ronnie stood at the top of the bed, holding my hands and smiling at me (he was wearing a mask, so while I couldn't actually see his smile, I could tell by the way his eyes were squinted that he was smiling). I prayed that this would go smoothly. Dr. Nemiro put the speculum in, and then inserted the catheter through my cervix. I prayed that my babies would get there soon and that God would keep them safe on their journey into my belly. 30 seconds later, the embryologist came through the door (they were communicating through a window in the wall, from OR to lab, the whole time to make sure the timing was perfect.) Drew, the embryologist, had our babies in a syringe/catheter, linked up to the catheter Dr. Nemiro had already placed - and with a steady push of the flushing fluid into my uterus, our babies were home. I prayed that they were getting nice and settled and that God would make this their home for the next 10 months. They wait 45 seconds before removing the catheter to allow the embryos to float away from and land somewhere. I prayed that they were landing somewhere and that God would protect them in my belly. Next thing I knew we were done. Just like that, two babies in my belly. Ronnie kissed my forehead and I tried my best not to move, to allow them to get comfortable.

We had to wait for an hour before leaving the clinic (we actually laid there for more like 1.5 hours, I wasn't in a hurry, wanting to give them all the time in the world to get comfortable...I would have slept there if they left me!)

So that was it. That is how you begin carrying two embryos in just a matter of hours. Now it's just pray and wait. Our pregnancy test is scheduled for next Tuesday, February 22...I think this will be a LONG week!

28 years old and one regret. Not bad.

by Michelle Matta

When Ronnie asked me to do a guest post I was excited to do it immediately. I have a lot of disability-paid hours to spare, tons of time during treatments for my 24% lungs, and a mind that needs a break from anticipating a call that is coming anytime. A call to tell me whether the doctors think its time to list for transplant following the assessment I did 3 weeks ago.

The delay in my post-writing was a combined result of the stresses of waiting for that fateful call, and the urgent desire to find a way to convince anyone out there to avoid my fate at all costs.

I had 80% lung function until I was 19 years old. No admissions until I was 23. In the years from 19 to 23, I lost 40% of my lung function, and I didn’t smoke or do drugs at all, or drink or date much. It was a direct result of a lifetime of little to no physio, and putting life before CF always. University, part-time jobs, socializing, everything typical of a young adult. I saw my numbers fall at clinic and forcefully proclaimed that I felt “fine”. Which was true, until I went below 50%.

I want you all to consider that you may have things going on right now that feel really important. Maybe you go to school, maybe you work, or both. Maybe you like going dancing all weekend and find it hard to squeeze in treatments. Whatever it is, take a moment to live slower. Physio is not as time-consuming as it feels. Spend 15-30 mins on facebook with your vest on. Watch your favourite show with the flutter in your mouth. Get a puppy and take him for a run every day. You’ve heard it all before, but trust me, the way it feels to wonder if you could’ve helped yourself have just 10% more lung function is too difficult to explain. 10% that could’ve meant pursuing surrogacy with my husband and having a baby on the way instead of living in the limbo of pre-transplant. 10% that would mean no oxygen concentrator chugging at night, or beside you in the mall, or preventing thoughts of winter trips to Florida. Maybe even 10% that would’ve let you be healthy enough for the most fabulous drug trial to stabilize your pft’s and save you from transplant entirely. It’s possible. It’s not about saving yourself from CF, its about making your life better. Just the little bit that you have the power to control, means a complete difference in your future at 25, 30, 35, and beyond.

And that university load that’s holding you back? That job you’re always stuck overtiming at? You know what happens to them? They become a terrible math equation. My 4 years at university bought me only two and a half years at my job before I had to stop working. Please remember that slow and steady wins the race, and unfortunately with CF, our best bet is to sometimes compromise living so busily in order to make it to the next step with good health.

If only I had known that my dreams would come true, and I would fall madly in love and ache for the rest of my fairytale. I would’ve never EVER missed a single physio session or chance at exercising. If only I had known that feeling fine is not enough. That’s my one regret.

Note from Ronnie: Thank you SO MUCH Michelle for taking the time to write this pointed and powerful guest blog. I've had the opportunity to share various emails with you and one thing is for sure, your desire to help others is very clear. You explicitly said to me "I hope my story helps someone out there". Well Michelle, I can guarantee you that this will help more than one. Sometimes, sharing our one regret can be more powerful than sharing our many accomplishments. Thank you.

My TESA Procedure

TESA, testicular sperm aspiration, is a non-surgical procedure performed in an attempt to recover testicular sperm from a male with Cystic Fibrosis. 95% of CF men are unable to conceive in the "natural way" and this is largely due to a congenital absence of the vas deferens (the tube that brings out the sperm to meet with the semen). I recently had my own TESA procedure and wanted to bring you guys inside the room. Don't worry though, I've edited out any shots of my boys. For more information on the TESA procedure, I encourage you to Google in or find some additional videos on YouTube.

By the way, they found sperm!!

Thankful Thursday - IVF Galore

We can't stress enough how important it is in our own lives to slow down when things seem to be getting "fast" and just think about the little things that we're thankful for. It will just be me posting today as I'm forcing my wife to rest as she recovers from laying all of her eggs. The little "Linky Tools" thingy that's usually at the end of these posts will not be there today as apparently it's a subscription service and I don't think it's worth paying for. I'll figure out an alternative for the future. Feel free to leave a link to your thankful blog in the comments section.

Ronnie's & Mandi's List:

We're so very thankful for a smooth IVF process thus far. We realize that this is far from over, but so far, we feel very fortunate to have had a good experience. Sure, we've had some physical pain here and some emotional stress there, but looking at the big picture, it's been a smooth ride. We're both very aware of the fact that whatever we go through in this entire process is well worth it if it means having the family we dream of.

I'm thankful that I have motile and "good looking" sperm. As most of you know, 95% of CF men have what some refer to as a "natural vasectomy". Now, this doesn't mean that we don't have sperm, it just means that it doesn't meet up with the semen as it should because of an absence of the vas deferens. With this "natural vasectomy" there comes a risk of having no sperm, lazy sperm or "weird" sperm. We got the call two days ago that they found plenty of sperm in my biopsy and that it was motile (good swimmers) and it's morphology checked out (normal structure). We had been praying for these results and feel so blessed that we're able to have our own children.

We're thankful that Mandi is one fertile myrtle. If you haven't heard the news, Mandi produced 42 eggs of which 18 were mature. They fertilized all 18 eggs and ended up with 15 embryos. We now wait to see how many of those embryos continue to grow over the next few days. The embryos that grow until day 5 will either be implanted or frozen for future use. We're praying that God provides the exact number of embryos that he would like for our family.

We're thankful for all of the kind words and support given to us through this process. You guys have been extremely encouraging and we'll never be able to express in words how much that means to us. We've had countless emails, phone calls, messages and comments that continue to put a smile on our face. It's amazing how loved you can feel by people you have never and probably will never meet in person. We just hope that our love for you shows as greatly as your love for us.

Egg Retrieval, Passing Out, and 5-month Pregnant Belly

I wanted to update you regarding the latest and greatest in IVF news. My egg retrieval was this morning, and it went very well. While we were there we found out that Ronnie's contribution had a ton of good swimmers, so they will definitely be able to fertilize all my eggs - which brings me to my next update. The egg retrieval resulted in 42 EGGS! Crazy, huh? Before you become too impressed, I should tell you that only 22 were mature! The video below is me, shortly after the procedure...still feeling pretty good.

Unfortunately, that didn't last all too long. After hitting the Gatorade hard, I had to go potty. The short trip to the bathroom resulted in my passing out, Ronnie getting to me before I was all the way out, and lightly getting me to the ground. After a solid 30 minutes on the bathroom floor, I was back up to snuff and ready to just go lay down in bed. I attempted to go potty again, made it this time, but again, the fainting drama ensued. This time, I didn't pass out, just got the chills, clammy and dizzy. Ever since those two episodes, I've been sitting in bed. The passing out has stopped, but the tightness/bloating in my stomach and chest hasn't subsided yet. We're talking BLOATED. I look about 3-5 months pregnant right now! I've pounded Gatorade like it's my job, and luckily peeing a ton (not peeing would mean we needed to let someone at our clinic know).

I am feeling much better this evening. Poor Ronnie has had to wait on me all day, while trying to ignore his throbbing souther-region! We Will keep you posted. Check out the video below to see me at my merriest! We have additional videos from today that we'll post another day :)

Keep us in your prayers. We so appreciate your support!

PS - Below is a video of our doctor performing an egg retrieval. This isn't of my actual procedure, as he didn't want Ronnie in there filming (it's a tiny room), but told us where we could find this video of a previous procedure he had shot himself.

**Warning - this isn't bloody or grotesque, but if words like vagina make you queazy, you may want to sit this one out! Hope you didn't just eat :)

I Got Kicked by a Horse!

IVF Crunch Time!!

How about those Packers, huh? It was a good game, and I was able to at least sit and pretend to watch most of it! Although our recording cut off, so we didn't see the last few minutes...LAME-O!! I absolutely LOVE the Super Bowl....commercials. I was relatively impressed by the commercials this year. There were a few really great ones. The halftime show was underwhelming. I actually like the Black Eyed Peas, but man oh man, they are terrible live and the sound guy made their mics way too loud for the quality of their voices. They're the kind of group that does a whole lot better when the background music drowns them out a bit (or A LOT). I did like Usher though. That man can dance.

We took a brief intermission from the game to give me my HCG trigger shot precisely at 7:30 PM. "Why are you telling us this?" you ask. Because it's the actual point of my blog, and I tried to ease into it by starting with some current events (how did I do?). The HCG trigger shot, to me, signifies the transition between all the boring, early IVF stuff, and the exciting, ball-moving-forward, IVF stuff. I've been doing HMG stimulant drugs since last Sunday. Thursday we had a really good ultrasound, which showed a lot of eggs growing. They wanted us to go back Friday afternoon, to see how I was doing again, since I wouldn't see them all weekend. Friday my eggs had grown more and they decided that I would be ready for my egg retrieval at 7:30 AM on Tuesday. That's right, TUESDAY! WOOT WOOT! In order to be ready for a Tuesday egg retrieval, they had me take my last HMG shot on Saturday morning with my Lupron. Then Sunday I did my Lupron in the AM, and Lupron and Trigger shot at 7:30pm. Why do I keep saying 7:30pm? Because the time on this one really matters. Exactly 38 hours after the shot is given, your eggs will naturally release. Therefore, they have you give it to yourself exactly 36 hours prior to your retrieval, so that your eggs will finish the maturation process, but before they can release, they snatch them from me. Today I take Medrol in the morning and Zithromax at night. Then I can't eat from midnight until after the procedure. This afternoon is Ronnie's big performance, his TESA, in which they'll go in and remove "cores" (OUCH) of tissue from the testicles, from which they will get sperm. I'll let him fill you in on this tomorrow more after he's actually had the procedure done...that is if his brain can function through the pain (kidding...I'm sure he'll be fine, he's a big, tough man!) Tuesday is my egg retrieval, and I'll continue on the Medrol and Zithromax the day of and day after the egg retrieval. Additionally, the day after the egg retrieval (Wednesday) I'll start Progestrone injections, and continue with those until they tell me to stop (sometime after the pregnancy test...on Feb 22). Sunday, February 13, will be the big day. The day they transfer 1 or 2 (we haven't quite decided yet, but I think 2) embryos back into my uterus. The day we've been working for. I am so excited I can barely contain myself!! We then have to wait 9 (LONG) days until the pregnancy test on February 22.

I am just excited to have dates. For a planner and someone that loves to know what is happening when, dates and a timeline are crucial. All that said, there's still a lot of uncertainty. You never know how your body is going to do, and there is a small chance that I might be faced with something called OHSS - where your ovaries are over-stimulated, and you have to give your body time between the retrieval and the transfer, so we'd have to wait a month. I'm hopeful we don't have to worry about this, but you never know (especially with as many follicles as I have going, 25++). We will know tomorrow after a blood test (testing my Estrogen levels) whether or not we'll be able to transfer the embryos on Sunday for sure or not.

For a big stress ball like me, weeks like this week are exciting, but also nerve-wracking. I have found a TON of comfort in the song Our God by Chris Tomlin. I have found a lot of peace in these lyrics: "Our God is greater, our God is stronger, God you are higher than any other.

Our God is Healer, Awesome in Power, Our God! Our God! And if our God is for us, then who could ever stop us. And if our God is with us, then what could stand against." (You can check out the song below).

Keep us in your thoughts and prayers! We'll keep you posted all week with the latest happenings!

"Knock My Socks Off"

by Mike Burke

I wanted to thank Ronnie for providing the CF community with this forum. Additional thanks for asking me to contribute. My name is Mike Burke. I’m from St. Louis, Missouri and I’m 41 years old. I have run 9 full marathons and somewhere around 15 half marathons. I have finished those races in the top 30-40% of the field.

Upon deciding Cystic Fibrosis would no longer dictate my decision making, mood and general outlook on life, I wanted to do something that would “Knock My Socks Off”. I wondered what I could do that would be something normal, that everyone else can do and at the same time I wanted to do something few people could do.

Growing up my parents were told by the doctors to “Keep him active”. So I played soccer, baseball and every kind of sport. I was an average athlete and as an adult I discovered I was not tall, fast, muscular or coordinated enough to play these sports very well. I was however short, skinny overly stubborn and motivated by something beyond normal people (Cystic Fibrosis), which is great raw material for distance runners. So right away I knew that my accomplishment would involve running. Running can be boring though, so I needed to make it fun and challenging. So how was I going to do that?

Run a marathon! Everyone can run a little. Not everyone can run 26.2 miles without stopping. Only 1% of our population has finished a marathon. I wonder what percent of that 1% can’t breathe well, can’t digest food well and has to manage diabetes? Not many I’d guess. So although I’m not particularly fast, I am in elite company.

Sometimes I feel like a coughing and barfing machine. Many times I will get coughing so hard the gag reflex in my body would take over and I'd let it rip. Throwing up on my shoes is a perfect excuse to buy new running shoes but it is frustrating. I know however that the coughing is clearing my lungs of that nasty stuff. You know the stuff you cough up, that when looking at it, would make mere humans without CF want to barf themselves.

So I could feel the therapeutic value in my lungs in just a short time of running. With this in mind I was not going to quit. Soon, I was able to run long distances without stopping. 13 miles. 15 miles. 18 miles. 21 miles. I was amazed at what my body could do. I was dumbfounded how I could gain 10 pounds while running 40-50 miles a week. Sure I got a little muscular in the legs, but 10 pounds!?!? I had not been able to gain weight since high school and at 30 I was putting on the LBs.

I wanted to run well every-day. That meant eating well and taking my pills every single time a piece of food went in my mouth. All the things I hated doing as a kid and young adult I was embracing. Taking 8,000 pills a year wasn’t a burden. Sitting in the vest was still a pain but it helped me achieve a goal. Going to the clinic was not fun but I wanted to know how I could live better to run better.

I was seeing the physical benefits of keeping to the medicine and treatments. Better yet I was feeling the mental benefits. The discipline, dedication and sacrifice it takes to run was building confidence. I was growing in confidence and I was bringing this discipline into my life in a fun way. I had overcome my fears of living with Cystic Fibrosis by dedicating myself to running. Each day I was proving I could do something normal. Something I saw people doing every day. My lungs were clearer. I was coughing less. I had gained weight.

The mental benefits were not just for me. The best influence for me was watching my wife and family. They were seeing a new life in me. I was being an example to them of how life should be lived when facing a tough challenge. They were worrying less seeing me try so hard.

So running started as a required therapy. So what! Everyone is told by the doctor to eat right and exercise. That isn’t anything different than anyone else has to do. We just have to do a little more of it. I found a way to make therapy fun and eventually it became a passion.

I love to run!

Not everyone is up for a marathon and not everyone will run to stay healthy. There are tons of activities that you can do to clear your lungs and have fun. Find yours.

You just may find peace, confidence, strength and health.

Mike

Note from Ronnie: Thank you SO MUCH Mike for taking the time to write this inspiring guest blog. You're not only an great role model for the CF community, but an inspiration for me personally. I look at guys like you and think "If he can do it, than surely can I!". I look forward to seeing which mountain you climb next and will be cheering you on every step, or stride, of the way!

Mandi's Eggs Are a-Cookin'!!!

We headed to our doctor's office to take a peak at Mandi's eggs, or as we call her Mother Hen, just to make sure everything is on schedule. It was a very important step as all that is IVF relies on the eggs developing at a normal pace. If they develop to slow there can be issues and conversely, if they develop to fast you may be having some problems. Worst case scenario - everything looks off and we have to cancel the cycle. To say Mandi was excited (see worried) about this appointment would be an understatement. As always, we'll try to give it to you in our own words first and then you can hear the expert talk it below. Seriously though, check out those ovaries!!!

Thankful Thursday - The Sun is ALWAYS Shining

We can't stress enough how important it is in our own lives to slow down when things seem to be getting "fast" and just think about the little things that we're thankful for. We had 4 other peeps join us last week in expressing their thankfulness and we're hoping that more climb on board today! I have a little "Linky Tools" at the end of this post that you can use to join the party and link up your thankfulness post! Feel free to spread this around to anyone you know that may like to participate.

Mandi's List:

I'm thankful for heating pads. The shots these last few days haven't been bad, but they do have a way of making my butt pretty sore. It was suggested to put a little heat pad onto the injection site to help move some of the meds out of the muscle, and believe you me, it feels AWESOME!

I'm thankful for birthdays. I am so thankful and feel so blessed to have celebrated Ronnie getting another year older yesterday. I LOVE birthdays and everything that comes with them - cake, cards, presents, the birthday song, you name it. I'm so blessed to have Ronnie in my life and I am so thankful that this marks another year of him growing older - although not wiser ;-)

I'm thankful for sunshine and Arizona weather. The midwest and north east was DUMPED on yesterday (anyone reading this get snowed in?!) and I am so thankful that we don't have to shovel our way out of our home in the winter time. After living in the midwest and north east growing up, and going to school in Syracuse, NY (where it's never sunny and ALWAYS cloudy) I am so thankful for the 360 sunny days in arizona and the bearable winter weather.

Ronnie's List:

I'm so thankful for a wife who isn't afraid to let me know when to shut up. I have a bad case of "foot-in-mouth" syndrome as what I mean to say isn't often what is actually said. Not only does she let me know when I should probably rephrase stuff or just completely quit talking, but she does it in a very respectful and loving way. You think I get in trouble now? It'd be 1000 times worse if Mandi wasn't around.

I'm thankful for all of the great birthday wishes I received yesterday. I'm not a big birthday guy (I requested that we watch Judge Judy together on the couch instead of going to dinner), but it is nice to read comments from others wishing you a great day or thanking you for doing something you're passionate about. It definitely provided me with some much needed energy heading into these next couple weeks. Thanks guys!

I'm thankful for a sun that seems to always be shining. Not only am I talking about this great Arizona sun (sorry to all of you who are getting dumped on by the whiteness right now), but I'm also talking about my life in general. It seems no matter what happens throughout the day, with my health or with the weather, the sun is always shining. I can't tell you how often I think about it being a great day for the simple fact that I'm able to wake up and tackle it.

Only 6 Years Left?

Yeah rizzzzight!!! I can't tell you guys how bonkers it drives me to hear that 37 number thrown around the community. You know the number I'm talking about right? 37 is the predicted median survival age for the CF community (here in America) according to the CFF. Since I'm turning 31 today, it got me thinking, should I just enjoy cash in my chips and enjoy the time I have left? I of course say that in jest as I would NEVER say that (and mean it), but to highlight an attitude that still is present in many of my close CF circles. We get fixated on a number that's thrown out there and then think we somehow have to live down to it or in some cases, spend our whole lives trying to attain it. Can I just say this, screw that number and screw statistics in general. I've never bought into the hype before and I certainly don't plan on buying into the hype now.

I was fortunate to develop this attitude at a very young age. I don't know why, but even as a youngster, I was able to see the forest through the trees. See, when I was born in 1980, that predicted median age of survival was hovering around 17. Even more so, there was an attitude present in the community to just "value the time you have" because "he probably won't see high school". Why do I remember this? Because I overheard a doctor say it. Not only did I hear doctors say it, but I saw many of my friends live it.

I'd like to introduce you to my friend Robbie. Robbie and I met at the hospital when we were kids and we connected right away. He was a few years older, but he was one of those "cool" CF kids that I longed to meet. You know, one who I thought was "just like me". There was one key difference however with me and Robbie. Robbie never did treatments. I used to question him all of the time as to why this was and to this day, I've never gotten an answer. Maybe it was because he was raised by a single mom who smoked in the house? I mean, she obviously didn't care, why should he. Maybe it's because they were on welfare and couldn't afford the latest and greatest in CF treatments? Maybe he heard the number 17 and thought to himself "what's the point"? I never did get a chance to get to the bottom of it, my friend Robbie died when he was 12. I still think of him to this day.

But this isn't a sad blog, see, even as a kid I knew I wasn't locked into Robbie's story. Shortly after he died, my mom cautiously approached me to assess how I felt about it all and to see if there was anything she could do. She asked if Robbie dying scared me at all. "I'm sad, but it doesn't scare me" I said "I'm not Robbie". "What do you mean?" she replied. I said, "Robbie didn't do his treatments and his mom never pounded him". Even back then I just couldn't buy into this whole "CF is CF" mentality and that we're all destined to the same fate or locked into some magical number. Again, screw that. Robbie should have never been included in any number or statistic that was ever thrown onto me. Sure, we both had CF, but that's were the similarities ended.

I feel the same way today. That 37 number means absolutely nothing to me. In fact, any number that includes the whole CF community means nothing to me. As long as those numbers include kids like Robbie who don't do treatments or have parents that don't give them a fighting chance, they mean nothing. We don't know what everybody else is doing out there. We do know however, that most surveys show that at least 50% of CFers do much less than or none of the treatments prescribed by their physicians. So I ask you, should they factor into any number that you hold up to yourself or your child? You obviously know my answer. Whether you pay attention to the numbers is up to you. I'm much more interested to hear about those who do what they have to do each day to have their lung function at it's highest possible position. If you don't care enough about yourself to do what you have to do to live a healthy life, then stay out of my statistics.

Now, inevitably, I'm going to get comments or emails saying something to the affect of "Ronnie, I hate you. I've done all of my treatments my entire life and I've exercised regularly since I was 4, yet my lung function continues to decline and I'm always sick. So just know that I do what I have to do and it still isn't working". Short response: You are in the minority. Not only are you in the minority of CFers that do all of their treatments everyday, but you're also in the minority of those that do all of their treatments and still can't get healthy. I generally like to focus on the majority, the majority of us who don't do everything we need to do to stay healthy and then wonder why we're sick. I've been there. I was living the "blind-folded excuse filled life" for many years. I know it's tough to own it and take responsibility for our own actions and choices, but man, once you do, it's just so much easier. You start to realize that we do in fact have a lot of control over this stupid cell disease and we have much more power than we give ourselves credit for. It's just a matter of biting the bullet and getting started.

With that said, on my birthday, here's my wish: I just want us all to commit to taking care of ourselves so in the near future we can see what the real predicted median age of this community. A community dedicated to treatments, exercise, self-worth and no excuses. I can guarantee you this, if we all committed, we'd see that 37 number WAY BACK in the rear-view mirror.

An Update from Clinic - It's Crunch Time

Yesterday, I had clinic for the first time since I got out of the hospital in mid-September. They'd like me to come to clinic more often, but with the frequency that I do clinical drug trials, I always have a pretty good idea of where I stand PFT wise. I don't know about all of you, but that's definitely the part I always look forward to come clinic time. I must add however that I'm certainly not doing what's best for me or best for my clinic. It's obviously a better situation if they're able to track me more closely and if you want to get down to the nuts and bolts of it - it's better for the center. Every CF clinic relies on outside funding to stay afloat, so the more patients they treat, the more money they get. If I'm not going to clinic, I'm not getting counted, therefore they don't get all of the money they deserve (do you see where this is going?). If they don't get the money they deserve, it not only affects me, but all of my great friends, including the doctors, at my clinic. Get it? Got it? Good!

As promised, I showed up to clinic yesterday looking forward to what they had to say. I've been off of my game for quite some time now because of all of the bleeding, so it's always a touchy situation heading in to see the docs in that condition. Like I told them, it's not that I feel terrible, it's that I haven't been able to "do me" for almost 3 weeks now. By that I mean I haven't been able to be as active and workout like I'm used to and it can obviously catch up in a fairly short time. I saw them 2 weeks ago (at a drug trial) and expressed to them that other than coughing up blood, I felt pretty darn good. I wasn't very tight, my cough was stable, my mucus was clear and my energy was up. Yesterday I had to report that the blood is still an issue and now the 3 weeks of not working out is starting to catch up to me. I find myself tighter than usual. My mucus is becoming thicker. My cough is deeper, yet it's harder to move the gunk out. The sucky part is, I don't feel it's a result of CF as much as it's a result of me not being able to keep CF in check. And that is very frustrating.

I'm a "let's solve the problem" kind of a guy instead of sit around and talk about it. This happens to translate very well to my CF life as I'm able to look back on the past and pick out stuff that's worked for me health wise and stuff that hasn't. Once I identify what works, I don't go on and on about what I should be doing or what I wish I would have done, I strap up my boots and I go for it. Right now, I find myself in a situation that I can't "go for it" and it pisses me off. My bleeding has become so frequent that I'm not able to do full strength Vest treatments. When I bleed, I stop Pulmozyme for a bit and I stay off 7%. Exercising is out of the questions. Do you see how this can be a problem? Talk about a better way to feel worse! Believe me, this is it.

Some of you are probably saying, "well, why don't you get your butt into the hospital then???". To you I say, you guys are 100% correct. I present myself as a no-excuses kind of a guy and I feel like a hypocrite for putting it off. But part of who I am is to be open and honest with this blog and use it as a way to hold myself accountable. An even bigger part of that is acknowledging when I'm going against my own advice and call myself out on it. So that's exactly what I'm doing. Let me be loud and clear, I should be going into the hospital and nipping this whole thing in the bud. I should put my health before all other things I have going on, because without my health, I have no other things. I should stop, listen to my body, and take care of this bleeding issue so I can get back on the road to booty kicking.

With all of that said, let me tell you why my hospital stay is being delayed. I want to be a daddy. Mandi and I have been going through the IVF process for a good two months now and it's getting into crunch time. "My part" is coming up in the next 10 days and I have to be available when I get the call. Depending on how Mandi's body responds to those big old shots we started giving her, I could be called for my sample anytime between February 5th to February 10th. It's kind of hard for them to take my baby batter out (if you were unclear) up here in Phoenix if I'm down in the hospital in Tucson. And even more important to me than that, 6 days after they get my sperm, they will be implanting an embryo into my wife. Every piece of my being wants to be there for her on our special day. I realize that the creation of our family is very unorthodox and it's not just a matter of a bottle of brandy and a hot tub, therefore, I want to be as much a part of this as possible. Make sense? Maybe not to you, but I know to us it's very important.

So there you have it, an update from clinic. As always, could be better, but it could be worse. I'd love it if you guys could keep us in your prayers for the next few weeks. Please pray that my bleeding lessens and that my health holds up until I can get into the Hole. Also, please pray that the rest of this IVF process goes smoothly and, God willing, we're able to start our family. Thank you guys so much for your support, your prayers and the continued reading of this blog.

The Beginning of the End

Yesterday was an exciting day! It was the first day of my HMG (stimulant) drug for our IVF cycle. I have been solely on Lupron (a drug used to put my body into "menopause" to shut it down and give it time to rest) since December 24th. I decreased my Lupron from 20 units, to 10 units on Friday, and I will continue on the 10 units all the way through the retrieval. The reason for staying on a low dose of Lupron during the stimulation of the ovaries is to keep me slightly suppressed, so my body doesn't ovulate on its own - we want to snatch up the eggs before I ovulate. So today I started my HMG injections, and man was I scared to start them. My Lupron is given in a dinky, tiny little needle in my belly, and is a piece of cake. However, I was dreading the HMG injections because they're intramuscular injections (meaning they need to be given into the muscle...which means a long, big ol' needle). I have done a lot of reading online about the whole IVF process, and many people complain about these shots. I was so nervous about starting these injections on Sunday morning, that I even had a little trouble sleeping on Saturday night. Part of me was nervous about the possible pain of the shot, but part of it was just being afraid that I'd over sleep (I have to give myself the shots between 7 and 8 am). I'm sure many of your are thinking, "you're a big weeny...it's just a shot." And to you guys I will say this, "you sound like my husband!" Ronnie has been telling me to stop psyching myself out - he knows my little mind gets me into a tizzy from time to time! And while I was nervous, it was an exciting day because it feels like it's the beginning of the end of this IVF cycle. It was over a month of injections, but we were at a holding pattern. These shots are getting my ovaries to start doing what they need to do, and within 12 days, we should have a bunch of eggs to fertilize...5 days after that we'll be putting embryo(s) back :)

All that said, check out the videos to see how my first shot went. You can see (and hear) my nervousness and uncertainty during the first video, and then you can two videos of the actual shot (that's right, we did TWO camera angles - professional huh?) - one is of my face while Ronnie gave the shot, the other is of the injection site.

I'll be on the HMG shots for 8-12 days - until my eggs are mature and ready to be taken. We have our first ultrasound to see how the eggs are looking on Thursday. We'll update you then! Please keep our process in your prayers!