Monday, January 13, 2014

Week 21: The same but different

We had our first visit at the Madison CF clinic this week.  In many ways, it's the same as the as the Boston clinic, but of course in some ways, it's different.  The first difference is that I drove us there in our new car, totally without incident I might add.  As I mentioned in a previous post, one big difference between the Boston and Madison clinics is that the Madison clinic actually has a waiting room, since they have many fewer CF patients than Boston and seem to be a bit less paranoid about patient-to-patient transmission of infections.  They do, however, request that all patients wear masks while waiting for their appointments.  Unfortunately, even the smallest masks are a bit too big for Lemon.

Lemon's appointment began in the patient intake room, where they measured his height and weight.  He continues to cruise along at the 25th percentile for weight, so all seems well there.  The awkward thing about the patient intake room, especially in winter, is that by the time Papa Bear and I had removed our outerwear and stripped Lemon down completely to be weighed, there were about 500 pieces of loose clothing scattered around the room, which we had to then gather up to move to the exam room.

One notable difference between the Madison exam rooms and the Boston ones is the decor.
Other than that, the appointment ran very much like one at the Boston clinic--at least we knew to expect to be in the room for two hours as a parade of new people came through.  We got visited by the doctor, the nurse, the nutritionists, the coordinator for the clinical study, the social worker, and on and on.  By the end of the appointment, Lemon was completely exhausted.  He had just managed to doze off in my arms when the nurse came back in and woke him up to do a throat culture--not exactly the most pleasant way to wake up.  Fortunately, that was the last thing we had to do so after that we bundled him up and put him in the car, where he promptly passed out and was blissfully unaware of being driven home by a novice at rush hour with "wintery mix" falling from the sky.

Another major difference between the Boston clinic and Madison is the approach to enzyme dosing.  Madison seems to pride itself on using the highest doses of enzymes in the country.  Honestly, I think it is a bit strange to pride yourself on being an outlier.  Unless there is very compelling evidence that it is good to give very high enzyme doses, is it really good to be the clinic giving the highest ones?  That is, if the highest doses are really the right thing, why aren't other clinics on the bandwagon already?  I do feel that our doctor in Boston was a bit too conservative with enzyme dosing, and Lemon would outgrow his prescribed dose in between visits.  But here I feel like I'm actually pushing back a little bit against the very high dosing.  While I do want the dose to be high enough that he won't outgrow it between appointments, I just don't see the benefit to giving him way more than he actually needs to digest his food and grow well.

The other interesting enzyme note is that we are going to have to switch brands of enzyme since our new insurance doesn't cover the old brand (Zenpep) unless you've tried the new brand (Creon) and it doesn't work for some reason.  I wish Zenpep were covered since we know it works well for us, but we found out today that we have to at least try Creon.  If it works for us, I suppose that's great, since it will mean a low co-pay and no need for repeated battles with the insurance company, but if it doesn't work, I will be really annoyed that we had to take Lemon off something that was working well just to prove a point with the insurance company.

Other than the ups and downs of our first visit to the new clinic, we've just been continuing to adapt to life in Madison.  We went to a grocery store about a mile from our house that had an extremely impressive produce selection (note the price on this unusual fruit in the lower left).

I also went out for my first run in our new neighborhood to try and develop some new running routes for myself.  It turns out that there is actually a hill in our neighborhood, which is encouraging.  In this view from the hilltop you can see the shopping complex that is about a mile from our new house, in the opposite direction from the grocery store.
It occurs to me that I don't have any pictures of the new house to post yet--maybe by next week it will be less of a disaster and I won't be embarrassed to post pictures of it on the internet!

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