10 Year Treat-A-Versary

Yes. Treat-a-versary is a made-up word. But that's what I'm celebrating today! I have been on IVIG for over 10 years now. That's a long time.

Let's do a little math, shall we?

I've gotten one treatment about every 4 weeks for the past 10 years. That amounts to about 130 treatments. Each treatment is pooled plasma from between 1,000 to 10,000 donations  That means, conservatively, I have benefitted from over 130,000 plasma donations. Let's say each plasma donor gives weekly... that means I have benefitted from the generosity of around 250 people.

Amazing. People are amazing. Science is amazing. Medicine is amazing.

Prescription Costs

We're a little more than halfway through this calendar year. Since the beginning of 2013, I've spent almost $400 on prescriptions. You read that right. Just general maintenance... and I have a great prescription drug plan that allows me to get my IVIG for $30 per month. Most prescriptions are $8 or $15.

Insane.

This means I spend around 1.5% of my income on medications, and I don't have that many. So I guess that puts the ACA's estimate of spending 8% of family income on insurance into perspective for me.

Working on My Fitness

For the first time in a long time, like really really long time, I'm actually able to engage in physical activity without extreme pain and/or feeling like death warmed over afterward. This is a huge development. I think there are a combination of factors playing into this. All good things, but all things that have taken a long time to come to fruition.

First, the plaquenil. Where would I be without it? My fingers are less swollen, to the point I may have to get my college ring re-sized. That's how long my fingers have been sausage-y. They almost look elegant. They're still short, but they aren't so stumpy. My joints hurt less, meaning pain doesn't keep me from trying to work out again tomorrow, or leave me feeling like I may have done permanent damage to myself. I feel actually good and limber after working out, instead of stiff, pained, and unable to move.

Second, I really think the airway clearance is making a huge difference for me. When I started this, I thought it was a little silly, to be honest. Why would I need to do this crap forever? Couldn't I just do it when I am not feeling well? No. The answer now is clearly no. I need to do it. I haven't been able to run without feeling like my lungs were burning since... I really don't remember. We thought it was asthma, which I guess it still could have been, but now I do not even need an inhaler when working out. My bronchioles don't burn. I used to get the feeling I'd run a very long distance after ver short ones. Now, I can go and go and push myself. That is amazing.

What do I mean by go and go? Last night, I ran 4 miles on the elliptical, if you can call that running. My average speed was between 7 and 8 miles an hour. Seriously! I can hardly believe it myself. Granted, it was on the flat setting on the elliptical, but I still think that's something to be proud of, especially since I've only been working out for the past week. I only just got the guts to do it. It makes me want to cry a little because I've been at points when walking a half mile was difficult, even in ideal weather. I've been at points when I dreaded coming to work because of walking from the metro to my office.

This is freedom to me. I can do things I want to do. I can get in better shape. I can be fit. It wasn't long ago when I didn't think that was an option for me in my life, other than trying to do some walking and not lose the function I have. Amazing.

I Dreamed a Dream

I had a dream about a PI friend last night. He has had a long struggle trying to maintain some semblance of normalcy. We hadn't heard from him in some time, so a friend messaged his family to see if there were any developments in his condition. In my dream, we learned of his passing and it was all very sad. We sent flowers to the funeral and organized fundraisers in his memory. It was very vivid to me and left me feeling very uneasy about his condition in reality.

As it turns out, those fears have some basis. My friend heard from him today and found out he's been diagnosed with IPEX Syndrome. IPEX syndrome is often found much younger, so I'm very concerned for his prognosis. It is a defect in the T cells that leads to total chaos in the immune system. Immune deficiencies, autoimmune problems, ridiculous allergic reactions to almost every food. It makes sense based on his experience, but it's shocking to me that it wasn't figured out sooner.

So now my friend will prepare for the first line treatment for IPEX... a bone marrow transplant. He's very fortunate to have 2 matched donors and will undergo the treatment this fall. I'm thankful at this point for the developments in the transplants and the fact that even a partially successful graft will make a huge difference in his life. I just hope the rest of my dream does not become reality.

Proper Handwashing

I must say, one of the greatest things I saw at the conference was the amount of handwashing. I'm not talking the splish-splash a lot of people do coming out of the restroom. Oh no. This was full contact, soap-and-water, honest-to-goodness excellent handwashing.

To be honest, I'm often grossed out by people's lack of hygiene. I mean, I'm no paragon in this area, but I do wash my hands like a pro. It's so important for the prevention of all sorts of nasty buggers. It's the most effective way to protect yourself from TB, C-Diff and a bajillion other nasties.

So good job, IDF Conference attending women! I saw you wash your hands and wash them well.

For more information on the benefits of proper handwashing, visit the CDC's handwashing website.

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.