Wednesday, January 20, 2010

Clinic Appointment

Today's appointment was much better than I had expected. I thought for sure the spasms and clamping would have left my lung function less than last time. However, I was pleasantly surprised when I blew a 40%! Granted its only up from 38% back in December, but its up and not down. I don't remember what my other numbers were last time but my FVC is at 65% and my 25/75 is at 14%. So my small airways still suck, as usual. I left with a prescription for Cipro so I can get the last of whatever is brewing in there out and maybe I can see 45% next time I come.

The rest was basically routine. My weight is stable. My O2 and HR were normal for me. My only issue was the slight fever I had - 99.1. Odd because I felt fine. And even odder because last night with my wicked headache I felt like I had a fever and was even flushed but I was only 98.8. So maybe it was a delayed reaction.

Dr H and I discussed my move some more. I told him I want to keep him as my doctor for as long as possible. To which he said in 20 years I'll have to be on my own without him (lol you need to know him so you can picture him saying this and why I laughed). He said that I should still call and set up a relationship with MGH or B&W so if I have an emergency like an acute bleed or obstruction I will have someone to call. When it comes to routine clean outs we can figure it out but we will find a home care IV place that works in Boston so I don't have to spend 3 weeks down here in Philly. I feel much better having made this choice.

One thing he did mention is to make sure my insurance will cover anything I need to have done in MA. If I do need to be admitted up there, I need to make sure I will be covered. That is easy enough, I can call next week and find out. He doesn't foresee anything major happening and I seem on the "right" track with my "garden variety" CF, as he calls it. So I can only hope that he is right and I don't have any unforeseen issues until my slow and steady decline leading up to transplant land.
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  1. So happy to hear that your clinic appt went well and that all signs point to Boston!!

  2. Glad your appointment went well!!

  3. Just wanted to give you a warning from my own experience of trying to do home IVs far from my center. My last course was all at home. Since my center couldn't get my PICC in that day, they sent me back in Eugene, figuring it wouldn't be a problem for me to get a PICC, since getting the meds with my home health isn't a problem.

    Well it turned into a huge headache, one that you may seriously want to consider getting a port to avoid. My local hospital places ports, but since my CF doctors don't have privileges there, I had to get a PICC order from my general who did have privileges. But he refused to write the order, even though he would not be managing my care at all, without seeing me in person, because "a PICC is an invasive procedure". This caused a lot of headaches at a stressful time, meant I had to pay another co-pay, waste over an hour at a doctor just to get the order for one, then the local hospital insisted on admitting me, for as long as it took to place the PICC, meaning I had to do all the admit and discharge paperwork.

    Long story short, I would have been able to start IVs at home in my PJs if I had a port, but that wasn't an option, since I didn't have one, so instead I got a lot of hassle to get a PICC placed remotely.

  4. Your other solution to my problem is to be sure to have someone who had local privileges, that will write orders without question to get a PICC based on your CF doc in Philly's recommendation.

  5. Thats great Amy. It is all coming together, the move to boston, staying with your doctor who knows you and good results at clinic.

  6. hmmmmmm that's a good point T. I will have to talk to my doctor about that when I go again in March.

  7. I had no problems doing IV in college when I was 6 hours away from my center. My home health company which was based at home would ship everything, antibiotics included to my dorm room. And then I'd goto the local hospital to get dressing changes and lab draws and they'd fax lab results back to my home center. I was something of an oddity up there. It was a rural area and I was probably the only CF person within hundreds of miles. But I did have my PICC placed at my home center before starting IVs at college. That prevented any problems like in the previous comment. But a port might be a good idea too.

  8. Hey! I'm late tto the game on this comment, but I just wanted to relate my own experience. When I moved to ATL for college I found that I hated Emory's center (it has since changed a lot and I don't mean to denigrate it for anyone who might go and like it -- just wasn't for me). So I ended up commuting back to DENVER (4-5 hours by plane) for my CF care. Obviously I had a local CF doc close at hand b/c I could always go to the Emory center for emergencies, but after my freshman year I would say I probably went maybe 2-3 times total. I bought a personal PFT monitor and would email my CF doc the results once a month. IVs were done at home with my local CF doc writing the orders based on phone calls made by my primary CF doc in Denver -- I never even had to go to the center. All prescriptions were handled through CF pharmacy so I didn't need a local doc. I did admissions during winter and summer breaks and was lucky enough never to need one in the interim (except once, when I also went in spring break). And yes, having a port made it easier, but I'm sure we could have made it work with PICC lines too. I called/emailed my doctor at the Denver clinic once a month after he got the PFT results and we would discuss symptoms. The only times he sent me to the local clinic were to get cultures/x-rays done.

    It's doable, and totally worth it to get the care you need from a doctor you trust. Good luck!