Thankful Thursday - Itches & Girl Power

Know what time it is? It's thankful Thursday time! 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 "linkytools" 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 fellowship. I'll be honest, I used to be the biggest social butterfly you've ever met. But as I've aged, I've turned the other way and actually avoid random chit chat as much as possible. However, whenever I'm actually at a social gathering, I really enjoy myself. This has been exactly the case with our small group. We meet every other Wednesday, and I always really enjoy our time with the couples in our small group. The conversation is always thought-provoking and I truly enjoy all the other couples in the group. I am so thankful to have a great group of people at our church to be in fellowship with. Also, Tuesday night for the first time a group of woman from my church got together to just hang out, and I am so thankful for the time we spent together, and incredibly thankful that we're going to continue getting together every other Tuesday.

I'm thankful that I've stopped being hungry ALL the time. The first trimester of my pregnancy I felt like I could eat a 6 course meal ALL day, every day. And as I gained a little more weight than I was "supposed to" I was a little worried. However, I have stopped feeling like I needed to stuff my face all day, so I think I'm eating quantities of food that are far healthier for me and for peanut.

I'm thankful for popcorn. I've always loved popcorn, and it always hits the spot. But I often don't think of it when I'm looking for a snack. However, I rediscovered my love of popcorn last night, and MAN am I thankful for that salty, buttery treat!!!

Ronnie's List:

I'm thankful for new connections made this week. It's seems like every week I am fortunate enough to talk to a couple new people from the CF community who I have previous not been able to speak at length before. I love getting the opportunity to connect on a deeper level and have the ability to share stories with each other. Every week is pretty awesome, but some connections that I've made this week are super awesome.

I'm thankful for my spur of the moment "itches to do something". I'm the type of person that if I get the urge to so something, I do it. Now, sometimes this is terrible and sometimes this is good. This week it was good. I had the sudden urge to clean our "catch-all closet". I'm sure that most of you know what I'm talking about. You know, that closet (or room) that collects everything that you don't have a place for. Well this week, I got the urge. As of right now it's not completely clean, but I'll tell you what, it look 1000 times better than it did on Monday!

I'm thankful for doctors that listen. During my last clinic visit I presented my doc with an new (but old) medication that I wanted to try out after hearing some good things about it on CysticLife.org. Without hesitation the doctor agreed to look it up and figure out the best way for me to get it. Within a week I was on my way to pick it up from the pharmacy. Thank you Dr. Daines!!

I'm thankful for the members of CysticLife. We were made aware today by the company that handles our server that CysticLife.org was coming close to using up all of it's allotted memory. What a great problem to have! Basically, being too active on the site is both bad and good...well bad until we can upgrade our server :) For the time being the site will have slower response time (we were able to make a few adjustments to improve response time today), but we're well on our way to making the necessary upgrades. What an awesome problem to have huh?!?!?

So, what are you thankful for today?

The Transition: Adult Pulmonary Team

So first I'll start with a little bit of a hospital update. It looks like I'll be taking PFTs today just to get an idea of where I'm at as I'll probably be leaving regardless of the result. Now of course if they are a lot lower or I wake up feeling terrible than there may be a change in plans, but at this point I feel a lot better than when I came in. My lungs are a lot more open and I feel like I'm going to be able to start kicking booty in the real world. My whole goal for coming into the hospital is to get stabilized to the point that I feel comfortable with taking care of myself at my house by doing treatments and exercising. I think I'm to that point now but of course would like increased PFTs to feel really good about this stay. So we'll see how it goes and I'll be sure to let you guys know.

What I really wanted to talk about was how my transition has been to the adult pulmonary team. This was my first experience with them as they just started rounding on adult patients in November. I'm not exactly sure all the ins and outs of why the transition came to be, but I'll give you guys my best guess based on what I've heard. Basically, our pediatric team was being overworked and were getting to the point where the number of adults served at the hospital was equaling the amount of kids that were served. We obviously want to put our doctors in the best position to succeed as well as our patients and this didn't always allow that to happen. Having overworked doctors not only impacts them negatively but it obviously impacts the care that the patient will receive. Then when you add on to it someone of an adult age that has adult problems other than CF you start to open up all new cans of worms that the pediatric team isn't qualified to handle (I would of course make the case that my pediatric doctors are more than competent to handle any issue that I've ever brought to them, but I understand an outsiders-looking-in perspective that adult patients should have doctors that specialize in adult needs).

I also heard that there was pressure coming down from the CFF as this clinic is one of the many supported by them. The CFF is doing their best to ensure that all clinics have an adult CF team that can easily be transitioned to at the appropriate time. Like I said above, I understand the reason behind it, but that doesn't necessarily make transition easy on either the doctors or the patients. Often times our best intentions have unintended consequences and we as patients can suffer the most. I've spoken to some of my friends about this and I know that I'm not the only one that feels this way. But before you think this is some type of "hit piece" on my new adult CF team, please let me assure you that this is not the intention of this blog. I'm simply sharing my experience so far just in case anyone out there can relate to it or is about to transition themselves.

One thing I want to point out is that I've been transitioned to an adult pulmonary team and not a CF specific adult pulmonary team. Many of the new doctors, of which I think I have met eight of them so far, have little or no experience in the cystic fibrosis world. I can understand their hesitation in taking on nearly 75 new patients or so. They certainly want to do the best job they can and when you're going into a new field feeling almost blindfolded, I can see that as being a very daunting task. I'm sure that some of the doctors on this adult pulmonary team almost felt "forced" to learn about or take on an issue that they weren't particularly interested in. So I want to make it clear that I truly do understand where they are coming from as well. Also, I want to make it clear that I understand how else this could have worked out. If this new adult pulmonary team didn't agree to take on new patients we would've been what some refer to as “up crap creek without a paddle”. I very much appreciate them not deciding to simply kick us to the curb and tell us to find a new hospital. I know for a fact that was an option and I'm very thankful that they chose to take us on.

Now onto what I think of the transition thus far...

This transition has definitely made me feel more like a patient. Since this new team isn't all that familiar with CF they must rely on their experience with other CF patients to kind of figure out what I'm going through. As we all know, this is a big mistake when it comes to the CF community. We are all so different and we all present various phenotypes at different times. It's a real dangerous practice to lump us all into one group and treat us all the same. In their defense, most of them have been very willing to listen to me and address some of my concerns on being treated like they would treat any other CF patient. After a lengthy conversation with one of the head doctors about me not agreeing with a “two-week limit” on receiving antibiotics in the hospital he seemed to really understand where I was coming from. His experience and his research may point to patients not getting much better after two weeks but the bottom line for me is I've gotten better after two weeks, many times in here. Sometimes it only takes two, sometimes three, sometimes four, heck, it's even taken five weeks before. That conversation was all about getting the point across that I didn't want to just be another patient, another statistic, another note in his chart. After our conversation I think he definitely felt more at ease with me and left by saying “well then, let's get you over this hump”. It was one of the first times that I felt like they were treating me like one of many, rather than many of one.

The transition has also been a little tough because I came in not knowing what to expect. All doctors, whether peds or adult, have their own method and ways of doing things. The new doctors keep a very different schedule and I can't really count on them coming at a specific times or specific days like I could with the old team. They're not as quick to respond to requests or pages or calls, but I do really feel like most of them try their best. I know they have a lot of other stuff going on and I have a feeling the more they get to know me and other CF patients the more responsive they will become. They'll start to understand that some of us don't want to be here and are willing to work hard to get out of this place. They'll also understand very quickly that they're going to see many of us repeatedly. We're not like the patients they are treating in the ICU who have acute illnesses who they “fix” and then send on their way. It should be the goal of both the CF doctor and the CF patient to establish a solid rapport and relationship. That's the biggest difference between the work they're used to doing and the work that they've been forced to do now. I think the sooner they understand that and truly buy into it, the easier this transition will become for both parties.

This blog is getting a little long so I'll just leave it at this- a kind of overall synopsis if you will. The transition has been what I expected, some awkwardness, some hesitation, new personalities and an opportunity to really voice my opinion on some issues. I think it could've been a lot worse, and honestly, I wasn't expecting better. There seems to be some doctors who really care and some doctors who want nothing more than to listen to my lungs, write a note in my chart and get out of my room. I'll identify the doctors that care and start to form relationships with them. I'll also identify the doctors that don't care and ask them to find a new line of work. If I'm not going to fight for myself nobody else will.

Like I've told every new doctor that I've met this stay “I want you to be my teammate, not my doctor, and I promise that nobody will work harder for me than me”.

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!!

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!!!

My Thoughts About Baby Makin'

Wait!! Before you turn off your computer, close down this blog or throw-up on your keyboard, don't panic - I will not actually go into my thoughts on the baby making process. Well, at least not the baby making process that most of you are familiar with. Today, Mandi and I head off to the fertility doc (is that what you call them?) to go over all of our options and get some initial screening done. Mandi shared some of her thoughts heading into this appointment, so I figure I might as well share some of mine.

- I'm excited. We're at the beginning of this whole journey and although I know it can be emotionally draining, I'm ready, and I'm excited. Here's the deal; I've been a "master" at managing expectations my whole life and I'm hoping that doesn't fail me during this process. I'm going into this expecting to create a child, BUT if that's not the end result, I'll be ok. I'll still end up with what I have now. A beautiful wife, a wonderful life and a crazy (in a good way) family that loves us unconditionally. The way I see it, we can't lose.

- I'm ready. From a very young age, I knew what I wanted to do. I wanted to be a great husband (check - right Mandi?) and a great father. I'm as ready as I'll ever be to start the journey to great fatherness (sounded good at the time). Mandi and I have discussed this many of times and for me it's a simple question and answer. What do I want to do now in life, that a child would prevent me from doing? Uhhhhh, nothing. What do I want to do now in life, that a child would allow me to do? Let's revert back to box number two - I'm ready to be a father.

- I'm hopeful. I'm hopeful that no matter what the result and no matter what the process, Mandi and I will grow our marriage. Nothing is more important to me. You often hear that "God doesn't waste pain" and "God can use us best when we're broken". I believe both of those things 100%, and although I pray it doesn't come to that, I also pray that if it does, we have the wisdom to recognize what God is trying to do in our lives. More importantly, I pray that we draw upon strength from Him as we lean upon each other.

- I'm faithful. When we made our vows, we promised to put our own wills below the wills of our Father. We're turning this process over to Him completely and our faithful that He will provide the most perfect outcome.

- I'm patient. "Patience is bitter, but it's fruit is sweet". I can't tell you how many times I'm recited that quote to myself, Mandi, my family and friends. I'll need to recall this quote probably more often than not during this process. And to be honest, it will probably not be a reminder for me. I won't name any names, but there is a little somebody who doesn't exactly excel in the patience category. That's what marriage is all about though, our strengths cover each other's weakness.

All-in-all I'm ready to get this party started and it starts with this first appointment. Send us some prayers that we're good candidates and that this process will be as smooth as possible. We'll be updating you as much as possible and also documenting as much as we can. That is, if you guys are even interested in coming along on this journey?

A Mixed Bag of Emotions

Tomorrow we meet with a fertility doc and I'm a mixed bag of emotions. Tomorrow is an initial consult: to hear what the options are, what the process looks like and what a reasonable timeline might be. As we have said before, we know it's a LONG process, so we're trying to start it on the early side of when we want to start popping out babies, because the last thing I want is to get the itch really bad, and have no answers and no idea what I'm looking at in terms of time (patience is something I'm still working on). All that being said, I would take a baby tomorrow if you handed it to me. I've always wanted to be a mom (probably because my own mother was a rock star) and I don't feel like there's anything we need to accomplish or do before a baby comes. So I am getting a little itchy :) The only thing that has kept us from going to see someone sooner is that we're just enjoying each other. Newly married life is the BEST and obviously a baby would really throw a wrench in some of that (like "Naked Sunday"...which never really got off the ground, but Ronnie really tried for it by not turning the AC below 85 all summer...in AZ). But we also know that Ronnie is 30, and even if he lives to 80 (which we're fully planning on), he'll likely get more and more tired (I guess we all will!), so I want to be sure that we're having kids while he's still a spring chicken and can throw a ball with them in the back yard (one of his top reasons for wanting kids).

There are about a bazillion questions swirling in my head, in addition to "when is right for us to start?". How much will this cost? How long will I have to be taking meds? (Side Note: I never take meds. And I hate taking meds because I worry about every side effect possible...but that I will have to get over). What are the risks with IVF and ICSI? Will Ronnie's little swimmers be in there when they aspirate? What are the risks of fertilizing an egg with a sperm that would have never been able to do it on their own? (Seems like a recipe for issues). What are the benefits and risks of implanting 1 egg vs 2? I'm only 5'2 and 106lbs....seems like carrying twins would be nearly impossible and just wreak havoc on my body. Although Ronnie keeps saying, "then we'd be done!" "Yeah, done as is dead," I think to myself. Will my vanity allow me to enjoy being pregnant and the likely weigh gain, stretch marks, and who knows what else? (I struggle with this one a bit...but I want to be preggers more than anything else...so it'll be a good learning experience on how to let go, and let God work his magic by allowing a HUMAN TO GROW IN MY BODY - still a crazy concept when you really think about it). Can I exercise? What is different with a high risk pregnancy? Where are all the procedures done? Why are you the doctor for us? (Obviously this is the question I will be asking this doctor, not one that you guys have to answer!) What if I have infertility issues also that we don't know about?

Those are just a few of the many questions. Some will be asked in this initial meeting...many will be reserved for when we actually get into the meat and potatoes of the process. I will try to take it all in and share as much as I can. In doing my hours of research (yes, hours upon hours) regarding options for couples in which the man has CF, there was very little to be found. Luckily, I found a few people on CysticLife who had been there and were willing to answer questions. Oddly enough, someone on CL, living in Phoenix, wrote a blog about all of it just a few weeks back. But I haven't found much more than that, and I know there are a ton of people out there with the same questions (maybe just about male infertility in general). So I will try to relay as much info as I can: the options and detail the whole process. Feel free to ask questions. After we hear what our options are tomorrow, we'll write our thoughts on each option (including the not so obvious of no IVF at all, and adopting or fostering to adopt). So expect that post in the next week or so!

So here's to tomorrow, step 2 in our baby makin' journey! I'm excited and want to puke, all at the same time!!!!

Health Care Reform, Doctors...and my Truck?

I have so many things to be thankful for this Thursday. Here are a few:

- I'm so thankful for a place to have open dialogue. I've been able to put up a couple different perspectives on the current Health Care debate and I've been so happy with the dialogue that has followed. This issue will obviously effect a CFer and their family more than it would the average joe and it's been nice to hear different opinions. We're also fortunate that some readers of this blog are from other countries and have also been able to relate to us their experience in care of Cystic Fibrosis. If you'd like to have your written blog featured here on RSR please send it to me, and as long as it is a positive contribution to the discussion, I will post it. My email can be accessed through my profile.

So which side do you pull the toilet paper from? I think we can come to a sensible conclusion to this before we start with Health Care...gotta start with baby steps.

- I'm very very thankful for my CF doctors. This past Monday was such a telling example to me that my docs just really want to do what's best for me. When I reported my symptoms and my decline in PFT numbers, Dr. Grad didn't hesitate in offering up a hospital stay. Why am I thankful for the offer? Cause I know that some CF doctors feel pressure by insurance companies for their patients to avoid the hospital because of the cost and sadly, they give in to that pressure. My doctors however fully stand behind decisions I make when it comes to my health and trust me when I say I need to come in or if I can fight the battle outside of the hospital. (Just a quick side note: my January hospital stay cost 350,000+ dollars)

It's pretty crazy when you actually SEE how much money is spent to keep me alive and healthy. When I say "I feel like a million bucks", I really mean it!

- I'm so thankful for my truck. Sounds kind of weird to say, but it makes sense when I tell you that I was with out it for 3 days due to a dead battery. When I went to start it a couple Saturdays ago, it responded with absolutely nothing. It was deader than a doorknob as they say. Upon returning from the lake, I tried (and failed) to jump start my truck. I also tried to remove the battery myself and bring it down to Checkers and get a new one. Because I didn't have the proper tools (or skills) to do this, my truck sat there for a few days and collected dust. As I was "working on it" one night, my neighbor offered a helping hand and actually got it jump started. I drove directly to Honda where they replaced my battery with a new one. She's been running like a gazelle ever since and it's nice to have her back.

My truck is white like this one but sure doesn't look as fancy. I'm pretty sure this is a new one. I just thought the picture looked pretty sweet.