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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”.
