Cystic Fibrosis Learning Center (CFLC) Continuum of Care Conference

If all goes well in here for the next handful of days and I continue making progress, I plan on being in New Jersey next week. I've been invited to take part in a newer CF conference and consider one of the main cogs behind the operation, a CF dad himself, a friend. For those of you near Jersey City, New Jersey, I invite you to check out the following information which has been taken from the CFLC website. I was not able to take part in the conference last year, but have spoken to people who attended, and heard nothing but great things about it. Please read the following and I hope to see you there!!

The following information is from http://www.cflearningcenter.com/

The CFLC Continuum of Care Conference targets healthcare professionals from CF care centers, including the entire CF healthcare team as well as the center’s affiliated hospital staff (pulmonologists, nurses, nurse practitioners, registered dietitians, respiratory therapists, and social workers). The target audience also includes family members/caregivers of patients with CF that will benefit from hearing real-life stories about other CF patients and learning about the latest therapies and techniques from CF healthcare professionals.

The 2.5-day Cystic Fibrosis Learning Center (CFLC) Continuum of Care Conference, sponsored by North American Center for Continuing Medical Education, LLC (NACCME), and developed with the experience and expertise of a diverse advisory board, is unique in that the conference features concurrent educational tracks – one for CF healthcare professionals and one for CF family members. The conference will encourage collaboration between CF healthcare professionals and families via collective sessions, including small group activities and "Ask the Expert" sessions.

Presented by some of the top experts in CF care, the 2010 CFLC Continuum of Care Conference healthcare professional track included sessions on: Lung Transplantation, CF Clinical Research, Exercise and Airway Clearance, and Resistant Bacteria and Infection Control, while the family track included topics such as: Reviewing the CF Diagnosis, CF Patient Rights At School, At Work, and Insurance, and Squeezing Airway Treatments into a Busy Day.

CF treatment does not stop at the clinical level and requires effective communication among the key players: the patient, family member/caregiver, and healthcare professionals. The CFLC Continuum of Care Conference is a unique opportunity for family members/caregivers of patients with CF to hear from thought leaders in the world of CF treatments, as well as interact with everyday healthcare professionals and other family members/caregivers sharing similar experiences. Discussions on the latest therapies that may improve the lives of those who suffer from CF and enhance the disease knowledge of the family members/caregivers are a complement to the comfort gained learning from other families in similar situations.

Attendee Testimonials

"[The 2010 CFLC Conference] was a great experience to not only go to the presentations, but to meet other family members. I look forward to attending next year..."
-- Erik Hudzik, Magnolia, New Jersey

"The entire conference was outstanding. The topics were broad and extremely interesting and applicable to CF life today!"
-- Bethann Deveney, Wilmington, Delaware

"From the “Chairman Welcome" to the final presentations two and a half days later, vital information was echoing through every hall...This conference was not only invigorating, but it was extremely beneficial."
-- Ruth George, Wethersfield, Connecticut

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).