We are here to extend our lives by THINKING DIFFERENT

Wednesday, July 1, 2009

Visit to National Jewish

I had a great consult today in Denver at National Jewish with Dr. Nick.

A few observations first and then a few things I learned....


  • Infection control is similar to Stanford and Minnesota (but very different from my center) - I have MDRPA and at my center I wear a gloves and mast and so does everyone I speak to (nurses, techs, and MD). Seats & chairs are wiped down with quick try hospital grade wipes at my center - not at Denver. I'm not saying that my center is right - but I'm definitely more comfortable with my center taking the Danish route with cross-contamination
  • Nurses are much more accessible here at Denver. Sara told me that she takes emails from her patients at all hours, even on weekends, to avoid having to send patients to the ER. On an iPhone, nonetheless... so the nurses don't have to be at their computeres. This should be the standard for every clinic in my mind - but not at my clinic. My nurse will return emails on her computer, but only during work hours. And my physician is NOT accessible by email (and I'm not sure Dr. Nick is either... but Stanford and Minnesota docs I visited are).
  • Denver has an Endo that works with their CF clinic - that actually comes to clinic and is VERY knowledgable of CF issues. This is VERY MUCH not the case where I go to clinic. CFRD is such a different beast that I find it unconscionable for my center to send us to a general endo that may or may not be totaly up to speed on CFRD.
  • The local of clinic in Denver is integrated with other lung-related patients. So you never who was in the clinic room before you and you never know who is sitting in the waiting room with you. At my clinic it's only CFer's during clinic time, so people in the waiting room are a "known entity" so to speak. Granted non-CFer's should probably be more affraid of me than I am of them, but I feel as though CFer's are well educated on proper hygene protocol, whereas people with COPD, pulmonary fibrosis, etc etc might not be. And therefore might not act accordingly.

What We Discussed and What I Learned

  • First topic was GERD and reflux issues. I've pretty much gotten my night sweats under control through increasing my PPI dose (a few break through night sweats but those are usually associated with crazy dreams or on days where I'm chugging caffine (not good for reflux)... so I'm down to 1-2 night sweats a month I'd say, as opposed to 4-5x a week for most of 2008). My CF doc poo-pooed seeing a gastro and getting some tests, but Sara and Dr. Nick encouraged me to consider seeing a gastro to mix up my PPI brands, or maybe come up with a recipe with Xantac, etc. pH probe and ultimately surgery was a possibility they suggested if pills didn't continue to help. So this gave me the extra encouragement to see a gastro and get his expert opinion, as opposed to asking my pulmonologist back home for gastro advice (stupid me... I should be smarter than that!!!!)
  • Second on the list was hemoptysis and accompanying broncheactasis (sorry for the horrible spelling). Basically Dr. Nick said he doesn't recommend embolization as of now, even though I bleed 2-4x a year. He says it's just a hit or miss procedure, and gave me an example of a gentleman who he just spoke to who had 9 embolizations but will still having trouble (HEY GESS! :) :) :) :) ). Among the reasons he mentioned is I don't bleed excessive amounts at each episode, embolization can damage other parts of the lung, embolization wouldn't necessarily end the bleeding (example Gess), and it's a risky procedure (they had a ped die last winter on the table). Dr. Nick added that the area might eventually scar over and would stop bleeding (lovely, although I'm not sure how much good that chunk of lung is doing for me anyway, so I'm not sure I'd miss it if it died).
Dr. Nick said that it's probably a good idea that I do abx when I have a bleed because #1 we've seen that the hemoptysis tends to stay away after I do IV's (although it always stays away, so idk). But he says the area (I gave him two CT scans from 2009) looks heavily inflammed, dilated airways and some plugs, so his guess is there is a tiny underlying infection when I get bleeds, but due to the broncheactasis I can't clear the mucus, pluss so I don't really get "symptoms" of an infection such as increased sputum production.

Although where I seem to feel tight and where the mucus seems to be coming from is my front right under my breast, Dr. Nick says the issue area seems to be more towards my back and towards under my right arm (nerve fibers in lungs aren't always very good/accurate, he says). So he wants me to do manual CPT, or a hand held precussor (sp) OR IPV (I go in tomorrow at 10am for them to show me how it works) to keep the area extra extra clear. He says the vest is good, but I need extra attention in that area. He hypothesizes that extra clearing in that area should help with bleeding frequency (but doesn't think it will go away).

He also suggested I look for another abx to alternate colistin with - he said the idea, when TOBI first came out, was to always alternate it with another abx.

  • Third topic was menses related hemoptysis with the super cool Endo (who I wish I could take back to my clinic). She says that blood vessels and other things in a woman's body change right before a menses begins (some women - non CF - get nose bleeds, etc). But since my hemo is 2-4x a year, not every month, she doesn't think that my menses is CAUSING the hemo. She just thinks that when conditions are ripe (tiny localized PA exacerbation, etc), it's easier for the blood vessels to break because they're more fragile right before my period starts. One other interesting factoid is she also sees type I diabetics, and she needs to adjust their insulin depending upon where they are in their cycle. Hormones influence so much!
We discussed going on something like Seasonelle to have my period every 3 months, but like everyone we're concerned because I have had a DVT and Superficial thrombosis which makes me more likely to have another one in the future. Plus the Endo doesn't think that messing with my cycle is necessarily a good thing. She claims that in about a year she's going to publish a study she is doing on CF and menopause. She has seen quite a # of newly diagnosed CFer's who are diagnosed at menopause... she thinks the hormone changes are making the CF symptoms more pronounced. I can't wait to read that article!

Lastly we spoke about my 2h OGTT - she wasn't too impressed by the 117 result. She says OGTT's can be influenced by so much (how much u exercised in the last 24h, what you have eaten over the past 3 days, what type of BC you are on). She takes all of her CFRDer's off of estrogen-based contraceptives when they are diagnosed because it makes their sugars more manageable. She says it would be interesting to see what my OGTT is if I stop my bc pills... but it may not change anything.

So there you go - that's the summary of my visit. Overall, some great tidbits and things to think about. I will definitely be seeing a gastro to monitor/treat my GERD aggressively, and I am considering doing another consult (UNC, anyone?) to get another opinion on embolization. Manual CPT, a precussor (sp) and/or IPV will for sure be added to my routine to get that area of my lungs somewhat under control (can't change the damage, but I can certainly change the plugs, mucus drainage and associated inflammation).

I'll post again tomorrow to let you konw about how I liked the IPV


  1. Awesome Amy! Sounds like they were able to offer some great new alternatives and things to think about. Good visit.

    Thanks for sharing, as always.


  2. As a UNC devotee, and a big fan of your clinic reviews, I would personally love to get your two cents on UNC. :o)

    Also, just fwiw, I was put on Megace (200mg) as an appetite stimulant a few years ago, but once I gained my weight back, I still stayed on 40-80mg as it prevents menstruation as well; I was much more prone to hemo episodes around my period, and the general hormone fluctuations caused me mini-exacerbations, ranging from "asthma-ish and annoying" to "flu-like and miserable" right around my period every month. I haven't had a period in 5 years, and since megace is only one hormone, rather than the combo most bc pills are, AND we can simply rachet up the dose when I need a little appetite boost, it's been a great solution for me. Does tend to cause sugars to run higher, but mine are still normal, esp. on such a low (40-80mg) dose. It also makes your boobs a little bigger :o) Hope that helps!

  3. Jessica thanks so much for your reply! I'm 5'3 and 118 so puting on weight isn't an issue. But I love exploring ALL options so I really appreciate your post. UNC won't be in the cards for me for a bit, but when it is you know I will eagerly post. I also have a feeling this isn't my last trip to Denver so I look forward to more blogging about those adventures in the months and yrs to come! :)

  4. Hey there, love the visits and reading about them.

    My acid reflux is only controlled by 30mg prevacid 2x per day now and so I popped in to a highly respected gastro office this week.

    The doctor said that she wants to do an endoscopy now while I am reporting that things are controlled so that she can see if they do look that way since I have only before hand endo when having problems. She said that if everything looks good then she could support that I am just requiring the higher med but if there is still some mucousal lining issues then we may be looking at other options surgically etc.

    I told her once I started on more aggressive acid regimen my lungs seemed to improve with nothing else being changed in any major way. We had also discussed my allergies and how they are alot worse now. She told me that they not only see the lung/asthma impact but they also see the impact in allergies. She says they dont know if in fact the acid does reflux into the lungs or if the acid coming up affects the nerves running behind esophogus etc that also affect the lungs.

    Anyway interesting visit and highly encourage you to get on the ball! he he he

    oh and ask around because the reason I was hesitant to go was two previous doctors I did NOT like or have good discussions with.

  5. It is a small world :o) I am glad that Gess's bleeding mess can be helpful to others. One thing to remember with Gess is that he has liver issues and way low platlet counts which adds to the bleeding issues.

    We will probably go to Denver the next time we are there to see family (so I would guess within a year). I think that UNC is probably our first stop since they have a lot of experience with bleeding and embolizations, etc. Plus we love them :)

    You are so awesome btw. Thanks for encouraging everyone to be more proactive. You have definitely influence me and how I advocate for Gess and how I push him!

    Thanks :)