How I found SARP
A while ago I heard about the Severe Asthma Research Program (SARP) but didn’t really think much about it. Last year wasn’t a good one for me with the non-existent winter creating an extra long mold season followed by the regular tree, grass, ragweed seasons rolling into fall with more mold. I was fairly miserable until late November or early December when the cold temperatures finally killed everything off. For a few months I was high on life doing little tasks around the house, cleaning out a closet, rebuilding a WWII shotgun and actually thinking about things I’d like to do with my free-time instead of just figuring out how I’m going to do the bare minimum. Even though this only lasted a few months, I sure did enjoy it.
Eventually things started flaring up again and I can confidently say I’ve been “sick” since mid May. I keep track of data for my doctors to more clearly quantify how well/bad I feel. Here’s an account of how many breathing treatments I’ve been doing separate from my rescue inhaler or other rescue medications:
- January – 28
- February – 25
- March – 31
- April – 14
- May – 61
- June – 126
- July – 107
- August – 195 and counting
Earlier in the year several friends of mine in the medical community asked if I’ve ever gone to an asthma center/clinic or have ever gotten a full work up/proper diagnosis. I was kind of surprised this hadn’t already happened. I would say I’ve had moderate asthma for years. It’s something I’ve struggled with for more than two decades and have been prescribed inhaled steroids to one degree or another since 1993. I’ve never really thought of myself as “severe,” but to be fair my condition started deteriorating in 2006 and kind of went logarithmic in 2009. Describing what all occurred and was discovered between 2008 and 2011 is a long story, but one compounding factor was just trying to find doctors interested in listening to my special case and taking me seriously. In that time period I saw two primary care physicians, two allergists, three or four pulmonologists and an ENT doctor, as well as took a trip down to Brigham and Women’s Hospital in Boston to be told I was having a decent day and to stop worrying so much. At times I’ve wondered if things wouldn’t be so bad had I continued to receive quality care during that time, but it’s a topic not really worth hashing and re-hashing.
So fast forward to August 2013 and I think it’s fair to say this is one of the worst months of asthma in my life so far. Last week I spent four days either in the ER or admitted at my local hospital and I don’t even want to think about how much work I’ve been missing. For now I just need to focus on getting better, avoiding triggers and physically limiting myself. About a week ago I was out in the living room watching movies and googling whatever sounded interesting because once again my lung function was low enough I couldn’t sleep. It was that night I came across BreathinStephen.com and noticed this thing called SARP for the second time. I checked out the web site and it really seemed like something for me. Friends of mine in the medical community had queued me into some of the good asthma centers in the country, but I wasn’t really sure how to get in to see someone. For SARP all I had to do was inquire. That morning/night/what-have-you I wrote a post on my blog which eventually led me to a few email exchanges with BreathinStephen, which eventually led to some emails with Dr. Wenzel of the University of Pittsburgh SARP site, and now I’m scheduling my first few visits with the site coordinator.
What is SARP?
The Severe Asthma Research Program is a comprehensive study on asthma in adults and children with seven clinical universities studying different aspects of the disease funded by the National Institutes of Health (NIH). I’m not expecting a cure or a magic bullet, I’m most excited at the prospect of learning more about my condition and contributing to the body of data which could result in helping others. Here’s their description of what they’re trying to accomplish:
The Severe Asthma Research Program was established with the mission to improve the understanding of severe asthma such that better treatment approaches can be developed. SARP is not a clinical trial of new or old drugs. Rather, its purpose is to gather an extraordinary amount of information ranging from responses to simple questions, to lung function, allergy and blood testing, as well as genetic and lung inflammation testing. This information, gathered over a series of 4-6 visits, is databased along with information from thousands of others. The data are analyzed to improve our understanding of this disease and focus the development of new drugs targeted specifically to severe asthma. Your participation in SARP allows your information to be joined with thousands of others to get a much “bigger picture” of the causes and processes of severe asthma.
Over the course of several visits I’ll go through many tests I’ve already experienced and a few about which I’ve only heard. Some of the tests have always been on the list of things to do if I was ever “bad enough.” This is one way for me to get them done without having to bug my doctors about it. A major bonus is all treatment and diagnosis through the study is free. I just have to show up for it.
Up until now I’ve seen separate lung and allergy doctors who both try to treat my asthma, but are never really on the same page. Allergies and asthma are so closely tied together but it’s been odd to have allergists constantly thinking I’m on way too many lung maintenance medications while the lung doctors think I’m on way too many allergy maintenance medications. SARP will be looking at both chronic conditions simultaneously which could gain some new perspective. I’ve already mentioned this to my primary care physician, who thinks it sounds like an amazing opportunity, and will be discussing this with my pulmonologist in a couple weeks. I’m looking forward to sharing my results here and with a new community of severe asthmatics I’ve recently joined.