Wednesday, February 16, 2011

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!!

Comments (6)

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Hopefully they can get you in soon! I'm heading in next week for my first IVs in almost 2 years. Apparently CF lungs and influenza don't get along so well, resulting in lower PFTs. (I had no idea my PFTs were down until I did the test. I thought I was all better from the flu.) I'm glad my dr. is being aggressive about it though! I was surprised to read that your CF center has just developed an adult team, since you come from a larger area than I do. (Or at least, I'm guessing you do.) We've had one for quite awhile now, and for me the transition wasn't bad. They do things basically exactly the same way as my peds team and they all work pretty closely together. So far, so good. Hopefully you have a positive experience with your adult team. Isn't it great that so many of us are living long enough that they had to start creating adult teams? :)
1 reply · active 737 weeks ago
Wow, first time in 2 years huh?!??! That's awesome. I'm a regular - I go in about every 4 months.
I remember when we got transitioned to an adult team. John's ped clinic had to get an adult doctor on staff to keep their accreditation as a pediatric clinic. I'll admit, at first I was less than thrilled. John had been with this team since his diagnosis. His brother had also been treated by them. When we went in for check-ups or illness, they all knew us and it felt like family. His brother died in 2001. So they suffered that loss too. Being a CF spouse I had grown very attached to that care team. It was all I had known since we began dating. After our first appointment, I was in tears! I just cried and cried that I wanted our old team back. It took a very long time before I had a break through moment of trust. The week before our wedding in 2004, John was at work and began coughing up blood. Nothing like being able to walk into the ER and get taken right back. Not really a perk of CF, but when you've been around hospitals, you know what I mean. They did an endoscopy to see what was going on and decided to admit him to keep an eye and run more test. I was not only concerned for him, but obviously with the stress of getting married I was ready to lose my mind. His doctor came over to me and put his hand on my shoulder and gave me a "kinda" hug. It was the most compassion I'd seen out of him since we got transferred. That moment sealed the deal for me and showed that he genuinely cared for John and me. It's been smooth sailing every since I handed over my trust. Good luck with your new team and prayers as always for your time in the hole.
I hope they get a bed available soon so you can feel better! I'll be praying the transition to an adult CF team will go smoothly. I definitely know how that can be as you become so attached to your "pediatric" care team, it's hard to leave. Praying for you and Mandi as well as you are going through the IVF process! Exciting!!
Bredee Holden's avatar

Bredee Holden · 737 weeks ago

Tell me what you think of the new CF team!! I'll be going to them in a little while and I am NERVOUS!! I love the peds team and they're the only doctors I've really ever had for an extended period. I'm sure the new doctors we'll be seeing are incredibly capable, it just makes me nervous because I've grown to trust them so implicitly. Keep us updated! :)

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