Friday, September 23, 2011

Update from the Hole: Day 24

Thursday, September 22, 2011

Thankful Thursday - Little Brother & Little Brother-in-Law

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. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:
I'm thankful for a thoughtful hubby and a wonderful brother-in-law. Yesterday morning I got word that the next batch of Outrun CF Virtual Race t-shirts were finished and ready for pick up. Only trouble is that we're in Tucson, and I had to be at an all day leadership training program. However, we have to get the shirts in the mail today (Thursday) or Friday in order to be on the safe side that people would receive their shirts by race day (Oct. 1). This meant I was going to have to leave my training at 4pm when it ended, drive the 4 hours round trip to get the shirts, go to my office to print the shipping labels, and stuff envelops. Needless to say I felt a little stressed by the thought of it. Well much to my delight and surprise, when I got out of my training I received a picture of my wonderful brother-in-law, Andrew, standing in Ronnie's hospital room, holding the box of shirts in his hands. They had orchestrated (and tricked me with a lot of lies) a plan to have Andrew get the shirts (he's living in Phoenix now, YIPPEE) and drive them down to Tucson to drop them off. When I got the picture text message, I actually got teared up (thank you pregnancy hormones). It was the best surprise EVER! ANNNNNND I'm thankful that all the shirts have been packaged and will be mailed TODAY! Who's excited?!

I'm thankful for leg-rests. As I mentioned, I've had a leadership training program this week. The first day, sitting with my feet on the floor while sitting in a chair, I learned that my feet get SWOLLEN that way. My thighs went straight to my toes. Tuesday and Wednesday I got wise. I grabbed a chair and put my legs up on them. Best idea ever!! I leave each day with calves AND ankles...can't beat that.

I'm thankful for this hospital stay. As Ronnie mentioned in a few of his videos, he's starting to feel better each day and we're thinking we MAY get out on Friday if things keep going the way they're going. While this hospital stay was a bit longer than we anticipated, based on his numbers heading into he stay, I am SO thankful for the opportunity he's had to come in and get tuned up. I'm so thankful that there are IV meds that work. I'm SO thankful that we have the insurance to pay for the stay. I'm so thankful that the timing of the stay is now, and not 6 weeks from now (I am always good with him being in the hospital...but the one exception would be if he was in the hospital when Peanut was born or in the first couple of weeks of Peanut's life. If it happened I could deal, but I'm fairly certain I would not have as positive of an attitude about the stay!!) I'm thankful that he's feeling better and ready to get out to kick butt on his own. I'm thankful that we have the opportunity to get out of here Friday and work together to get his PFTs up. I'm thankful for our weekend morning traditions of Dunkin' and Johnjay and Rich. I'm thankful for the wonderful home-cooked meals Chris, Ronnie's mom, brought us several times a week. I'm just flat out thankful for all that this hospital stay has entailed. We are truly blessed!!

Ronnie's List:

I'm so thankful for my baby brother having my back. It's a pretty long story so I'll try to give you the short version. In order to get the Outrun CF shirts to people by race day, we knew we would have to send them out in the next couple of days. Problem is, we're still in Tucson, and the shirts were in Phoenix. Mandi was at a conference until 5 PM and our only option was for her to leave after the conference and drive up to Phoenix to get the shirts. That would get her back to the hospital around 9 but she would still have to pack them all to get them shipped out. It was obviously something she wasn't looking forward to, and be honest, it was the last thing that I really wanted her to do as well. As soon as Mandi went out the door this morning on her way to the conference I texted my brother Andrew to see if he could help out. He didn't even think twice and said that he would gladly pick up the shirts in Phoenix and run him down to Tucson in order to save Mandi the trip! We're talking a solid 4 hours in the car. I didn't tell Mandi this was happening and it all almost blew up in my face when her phone died as she left the conference. I was panicking at the thought of her hitting the highway before her phone would be charged enough to make a call. Fortunately, she called me before she left town and I gave her the good news. She shed a few tears and said that she couldn't be any happier! So again, I would just like to give a big thank you to my little brother for bailing us out :)

I'm thankful for my entire hospital experience. I'll be honest, I generally don't hate the hospital because I can see the forest through the trees, but this stay has been better than usual. And maybe not better than usual per se, but better than the last day. During my last hospital stay the entire adult CF population in Tucson was transferred to adult pulmonologists instead of being seen by our pediatric CF team. Transition of course is never easy as each party needs to learn each other, but this one was particularly hard since the new adult team was basically forced into the position. Fortunately, they're not the only ones responsible for our care while in the hospital. We are seen daily by hospitalists that focus on overall care and can handle pretty much any issue. Before actually doing anything, as in writing the orders, they have to confer with the adult team, but they're the ones that you can count on to get stuff done. This stay the hospitalists seem to have taken even more interest in cystic fibrosis. They are asking more questions about it and whether it's true or not, it just seems like they care more. They are taking more pride in their job and I truly feel like they felt a little bit invested in me this day. In fact, the 3 weeks I have been here I've only seen an adult pulmonologist 3 to 4 times and I'd say that I'm doing just fine! So a big thank you to all the hospitalists that have been in and out of my room :)

I'm thankful for my most recent PFT results. They still aren't up to that magic “baseline”, but I don't expect my lung function to get there during hospital stays as I get older. Since I rely so much an exercise to keep me healthy, it's not a shocker that my lung function often drops a bit in here the first couple of weeks. There is a big difference between exercising somewhere around 2 hours a day to being regulated to walking around hospital grounds and riding an exercise bike. So all in all I'm very happy with my latest PFT numbers being around 5 to 7% below baseline. There is no doubt in my mind they will be back up to baseline or beyond in about a month or so!

So, what are you thankful for today?

Wednesday, September 21, 2011

Update from the Hole: Day 22

Ever wonder where Mandi sleeps while we're here? Answer within!!

Tuesday, September 20, 2011

Update from the Hole: Day 21

CFit: Cystic Fibrosis Exercise Program -

Monday, September 19, 2011

Why Do You Go Into The Hospital For So Long??

I've been meaning to write a blog about this because it's a question I get often and I just so happened to answer it this weekend, so I thought I would share.

I have a question? Why do you always do such long hospital stays? If it helps you great, I was just always told that after ten days if antibiotics don't work, they aren't going to, they always kept me 14 days so that the drugs would be in my system a bit longer, but after 2 weeks if I wasnt better they would start me on new Meds or add to the brew. So I was just wondering?
I guess the short answer to your question is that I come into the hospital for more reasons than just IV antibiotics - focused care, hand pounds, rest, etc. If I thought IV antibiotics (and IV antibiotics alone) did the trick, I would just do them at home. For me, I've improved in here after 5 days at times and after 25 days at other times.

Like most things, I just think it's important to figure out what works for us, truly works best for us, and go with that. It takes a lot of trial and error, but eventually we can get it figured out.

And about the 10 day antibiotic thing... that is still disputed in the medical community and I've been told off the record that some doctors use it as a tool to just get us out of the hospital. Many people don't think about this, but hospitals start to lose money on CF patients after a certain amount of days. Could pressure from the hospital or from the insurance company play a role? I of course don't know, but when it comes to money, nothing is out of the question.

Also, how antibiotics actually work in the lungs of a CF patient is not only not clear but hardly an exact science. A study just came out stating that there was no difference in clinical outcomes when it came to selecting drugs based on a sensitivity study and just cycling the most common antibiotics. It is my belief (as well as the belief of many others) that antibiotics are still one of the most misunderstood parts of our care.

The only way to truly know if the antibiotics were taking are working, is to focus on the quality of life and the improvement we see in how we feel. It's also important to remember that there is also a victory in not getting worse. My numbers often don't change for the better while I'm in the Hole, as my exercise is greatly reduced and I don't do well lung wise laying around all day. My number 1 goal for coming to the hospital is to get me back to a place that I can leave here and confidently say, "I'm ready to kick some major booty!"

Hope that answers your question, it was a good one!

**It's also important to note that I have in fact tried at home IV's more than a couple times and I neither felt better, nor saw an increase in lung function, any of those times. That doesn't mean that I won't try again, but it does mean that I am skeptical. Things can change however, and I'll never pigeon hole something forever :)