Friday, February 4, 2011

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!!!

Thursday, February 3, 2011

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.

Wednesday, February 2, 2011

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.

Tuesday, February 1, 2011

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.

Monday, January 31, 2011

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'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!