Conference Wrap-Up

I promised a run down of my experience at the IDF Conference in Baltimore. It was pretty good, as far as information goes, but I always feel like it's the same few sessions over and again. I am usually able to get a few granules of information from the talks, but I always wind up feeling like they are all for the newly diagnosed. And not necessarily the newly diagnosed with certain issues, but the straight up new to the community folks.

For example: I went to a lung disease session, as I was just diagnosed with bronchiectasis, because it was supposed to be about new treatment modalities. Instead, they spent the time talking about common complications, etc. Which is fine, but it's hard not to want a little bit more in-depth conversation about what to expect. I did get some indication that my doctors are doing the right things, which is nice, I suppose.

New this year were some encouraging prognosis statistics... for the 60% of CVID patients without autoimmune complications... so, not me. It's kind of frustrating for them to start trumpeting about new statistics and such when they don't apply to so many of the patients. It's sad, too, because one of the hardest parts of all this is not knowing what to expect. I expect positive things, but sometimes it would be nice to have some sort of reassurance from experts.

I was especially encouraged by the survey results from the survey on women's issues they took recently. It demonstrated that CVID patients can have normal pregnancies, normal children, and all of that. So that was nice.

I have to say, though, sometimes the conference is hard to watch. Why hard to watch? Because it's so poorly done from a logistics standpoint. It was very clear to me, with my meeting planner hat on, that they were trying to save money. How was this so clear? No beverages. That's right. No coffee for breaks, coffee was taken at the end of breakfast, and not enough coffee was provided for all that wanted it after dinner. The Hilton had clearly been given limits for how much to serve and when. Sad, when you consider that most of the population needs pretty consistent levels of hydration not to feel like poo. Why would you not move dinner to a larger venue instead of doing 2 seatings? Why not have more "safe" foods instead of mayo-based salads outdoors in the summer? Why were foods not marked for allergens in a community with high levels of allergies? Eating anything but meat-laden things would have been difficult, so I guess it's good I'm not a vegetarian, vegan, or gluten free. YIKES!

Next conference is in New Orleans. I have now fully learned my lesson and will make certain to bring my own food to the next one, or have some brought in, along with as much liquid as I can reasonably carry.

Reality Bites

I spent the past weekend in Baltimore at the IDF Conference (which I will get into in more detail later) and it was a good time to catch up with friends... at least for the most part. It always leaves me pretty run down, but this time it was an extra special dose of exhaustion.

On Saturday night, for the first night in about a week, I took my sleeping medication. I had a blissful night of sleep, about 10 hours. I woke up feeling pretty good... until I looked at my phone. Three missed calls from people who never call me (they usually text) and a flurry of texts. Uh oh. Come to find out, a friend had to go to the ER on the last evening of the conference. I'm actually surprised more folks don't have to go in, but she was the second (and I think last) that had to go, at least of the deficients I know. 

I get up at around 8:30, see all this stuff, hop in the shower, throw my things into my suitcase, then hurry over to the University of Maryland Emergency Department, where they were keeping my friend for observation. I'm really thankful I got over there when I did to help her explain things to doctors, etc, because it's really difficult to explain when benadryl has rendered you nearly unconscious and makes it impossible to focus. I was also able to use some of my lung knowledge gained by looking at scan slides to help explain to the docs what they were seeing with N's scans. That was good. 

I was certainly glad to be there to help her out, but it also set off some personal alarms with me. Perhaps my own fears of traveling alone are more warranted than I had previously thought. It's a little scary to see someone so close to you in age be in such need of assistance. I mean, we were absolutely 100% there to help her, but I wonder what would have happened if it had been me, alone, several hundred miles from home. As much as I would like to think I'm not limited by CVID, I really am in some very important ways. This demonstrates more than ever that I need a travel buddy always. I'm grateful that B was there on the other end to help me get my things out of the hotel and checked out and all of that, but I'm really trying to evaluate the plans I have in place and the ease with which my doctors can be contacted. It matters more than I would like.

Indigestion

I thought I would post more about the conference and the wonderful things I learned. Well, I had the best intentions, but it just didn't work out that way and I wondered if there was some greater reason.

I was hoping it may have something to do with the fact that I've been stressed by external issues, and I really wish I could blame that. I feel strongly that there's something deeper at work. I just feel like I have a form of brain indigestion.

Uh. What?

Well, I think there has just been too much information uploaded to really be able to distill the valuable things yet. I am trying not to be too hard on myself, but that is a really challenging thing to do. It is difficult to explain properly. My mind feels like a brita pitcher. the top is full, and is slowly dripping down to give me the information that is most useful to me. I am working on it and will post about things I learned, but right now, it's just a little overwhelming. I know I learned things that were a relief as well as things that are a little scary. Eventually, I will share them with you. I promise.