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Thursday, December 4, 2008

Stanford visit

Disclaimer: I share with you all this information in the spirit of good health. I am not here to promote anything any doctors have recommended, nor do I intend to make any doctor upset by me posting his/her name/information/recommendations. My sole purpose for this post is to help my fellow CFer's gain an upper hand on this horrible disease.

So I decided a few months back to head to Stanford's CF Center for a consultation. As many of you who know me know, checking out other CF Centers is a fav pastime of mine. Well, not really, but I did go to Minnesota in 2006 and I visited Cincinnati this summer so this will make my 3rd excursion.

I originally didn't have much of an agenda when I made the apt to see Dr. Weill, Director of the Adult CF Center at Stanford. But I've been dealing with a decreased FEV1 the past few months which has lead to ABPA suspicion, so the consultation ended up being perfect timing.

I'll first list my initial top line impressions, then I'll go into specifics about my personal care and his subsequent recommendations.

  • Infection control was not as stringent as my clinic. Scales aren't wiped down after each patient; chairs at the nurse's station and the actual examination room aren't wiped down; blood pressure cuffs aren't changed in between patients nor are they wiped down; CF patients aren't given masks/gloves when they check in; doc, nurses, PFT tech didn't gown up when around me; I'm a MDRPA patient so all of this was VERY surprising to me and very very different from my clinic.... i thought for sure what my clinic did was CFF protocol!!!! bleh
  • The clinic is very tech savvy: they post patient education days on the web; I was encouraged by Dr. Weill to email him; the clinic was riddled with posters encouraging patients to check out their website or to research such and such thing on another website
  • The clinic is very multi-disciplinarian - ENT works extremely closely with Pulm, as does Gastro and Allergy; this is NOT the case with my CF team by any stretch of the imagination and I think that this close link improves patient outcomes.... CF is NOT simply a "mucus in the lungs" disease by any means!!!

Background Before Visit

Just so you have some context behind my visit. I haven't had fevers, increase in sputum, increased fatigue or decreased exercise tolerance yet my FEV1 is down by about 10%. I did, however, have to discontinue cromolyn sodium for 5+ months because the manufacturer disc. Thankfully the past 2 weeks I was able to get the med back but the thought is that maybe discontinuing this med that has caused massive inflammation (from the severe environmental allergies I have or maybe the aspergillis that I've culture for 5+ years).

Doc back home did an IgE aspergillis specific (1.83 was the result - high). Home doc not convinced it's ABPA because I'm not wheezing, etc.

CT Scan has showed no fungus balls, but rather slight increase in mucus plugging and slight increase in broncheactasis since last CT scan 12 months ago. I have been switched from flovent MDI to Advair to see if the long acting bronchodilator helps with inflammation. I'll be re-doing PFT's on Monday, Dec 8.

Another issue I've been having the past 12 months is night sweats. Hormones have been checked; OGTT done; not eating high carbs right before bed; TB tested; the whole 9 years. ENT and doc hypothesize it might be sinus junk but I don't really look bad enough for surgery.

Stanford Visit Findings

A few fun things that I think will be useful moving forward:

  • Regarding ABPA, Dr. Weill couldn't be sure because he didn't have the CT scan (will send to him when I get a hard copy) but he told me that he does an IgE test every clinic visit for his patients. If the # is >1000, patients get 1 week of steroids and voriconazole even if they aren't showing symptoms. Something I will be thinking about when further examining my ABPA possible issue
  • Interesting rinkle in the year long night sweat saga: Dr. Weill feels that my decrease in lung function and night sweats could be due to nocternal aspiration of gastric juice due to bad GERD. He says he has done some barium test (ph probe, mannometry, and esophagram.) and many CFer's show no other GERD symptoms but they're aspirating and it's causing inflammation/harm to the lungs. So I'll be investigating that and increasing my PPI dose from once a day to twice a day (btw i have since increased my PPI dose from 1x to 2x a day and night sweats are gone since December 2008. YEY! i will soon be looking into doing the above mentioned tests anyway, though...)

So I have a bit to talk to my doc about when I see him on Monday. But I think these two tidbits of info were helpful for me and might be for anyone out there looking for answers to night sweats or interested in aggressively treating inflammation/fungal troubles.

Let me know if you have any questions/comments/advice/etc. This was a great trip and I just may put Denver or UNC next on my list of clinics to visit in the coming years.... it's always nice to see what everyone else is up to :)


  1. Go to the Denver Clinic - it is truly amazing (I say this as a "graduate" of the children's program). They have incredible docs and they care so much about their patients. Plus proactive is so the name of their game - they are involved with all the drug studies and they have even one so far as to mix their own aztreonam for inhalation if needed. They refuse to allow patients to go downhill if there is ANYTHING that might be worth trying.

    Whew, enough promotion. As for the issue at hand, I hope you fare well with the Advair. I have the discus and it's been really wonderful for me - better than flovent. Steroids are great tools against inflammation (I just wrote about starting a new one on my blog). Love the new layout, btw!

  2. Wow, I definately have had some GERD/lung interference recently but to have no other symptoms and it still be a possibility is interesting.

    As for infection control, your current clinic sounds awesome! Neither the clinic I have been to or are going to do that. They ahve dedicated steths in the room that get wiped down but weight, bp everything in central local. I have thought about wearing a mask before and didnt, maybe I will reconsider. THe other problem with new clinic is you go to a room with a glass box to blow and there are only two stations for all patients and you are partially IN the box and they dont wipe it down. I have expressed concern but I think I will escalate it now that I hear how seriously some other clinics take it. Thanks, as usuall I benefit from reading your stuff.

    As for the real matter at hand I surely hope they get you all set up and figured out. I had forgotten you still have that nigth sweat thing going on too. One or the other isnt so bad but kind of concerning combined I would think. I am on prevacid, what PPI are you on?

    take care