Tag Archive for sarp

My new doctor

One of the goals of SARP is to identify and better understand the different types of asthma, as well as finding ways to better focus treatment.  Check out this video BreathinStephen recently shared.

Yep, that’s my new doctor.  I think I’m in good hands.  If you’re a fellow asthma sufferer, I can’t recommend participating in SARP enough.  There are seven locations around the United States and hopefully one is close to you.

SARP visits 1 and 2

After thinking, “I really need to go get checked out at an asthma clinic or center,” for a few months and finally deciding I wanted to participate in SARP at the Pittsburgh location, I really had no idea for what I was in store.  The past 20 years have been frustrating for me as an asthmatic, trying to find doctors who take the time to really understand my struggles without dismissing me, and who don’t dismiss me/give up up when I don’t respond to standard treatments.  Every employee we’ve encountered at UPMC has been the nicest, kindest, most thoughtful, caring, understanding, knowledgeable, educating, sympathetic and empathetic medical professionals I’ve ever experienced outside of a couple individuals or personal friends.  I cannot say enough for the people here and the personal care and attention we’ve received this week.

A few examples:

  • I have the personal emails and phone numbers of my doctors, nurses and technicians who have encouraged me to contact them for any reason I feel is important.  I was already receiving 12hr turn-arounds on emails sent over the weekend before we arrived.
  • Liz needed to jump online in order to meet with her class during my tests yesterday.  The research coordinator made sure Liz was online and settled in a quiet waiting room, even offering her own computer if Liz’s had any issues connecting to the hospital network.
  • Absolutely everything has been explained to me in great detail with every opportunity to ask any question I desire.
  • I haven’t had to defend or explain any of my symptoms or medical history.
  • I’ve never once been told, “You’re not normal,” “We’ve never seen/heard of this before,” “We don’t know what to do,” or “I don’t think you really have asthma.”
  • I haven’t had to talk to anyone who understands only asthma and not any of the secondary, accompanying conditions and diseases.
  • Everyone has been interested in Liz and I as people, not just my test results or medication list.
  • The main nurse and asthma educator spent as much time as possible in between tests to ascertain what my asthma is like, how I manage it and to inform me of anything that has come about in recent literature and studies that could improve my status quo.
  • No one has acted like my breathing difficulties are all in my head just because I don’t respond well enough to two puffs of albuterol or some prednisone.

Tomorrow I see my new doctor who has been out of town these past two days.  We’ll go over the test results and try to make a plan of action of what to do next.  I have not found a single negative thing about this doctor online.  Everyone has only amazing, not good or great but amazing, things to say about her.

For anyone out there suffering with asthma needing answers, I’d highly suggest checking out the Pittsburgh Asthma Institute or a similar facility.  I think it’s fair to say you’ll have a great experience.  If you do end up coming here, definitely check out Family House for a place to stay.  It’s at least half the price of any hotel you’ll find in the area, the staff are extremely friendly and helpful, you have access to an Iron Chef kitchen area and there are shuttles to take you between Family House and any of the UPMC medical facilities.  It’s not a five-star hotel, but it has everything you need with perks you won’t find elsewhere.  If you are seeing any doctor or receiving treatment in the area requiring you to stay overnight, you are eligible to stay at any of their locations.

Prednisone test

Today my prednisone starts tapering again.  This will be a test to see if I’m really improving or not.  So far I’ve stayed out of the hospital for just over a week, but I’ve also been on a high dose of prednisone for eight days.  Over the summer every time my taper has dropped down to a certain point everything flares up again.  There are some good signs though like I’m starting to sleep again and feel tired, and my voice is also sounding slightly normal.

I had the chance to consider returning to work this week but decided not to.  It’s just not worth it.  I’m still not able to be up on my feet all day.  Just doing what little around the house still leaves me worn out and exhausted.  I’m continuing to have bad spells at least once a day and I know just walking and talking at work would be detrimental.  I need to return ready to work, not dragging myself around and panting like I just ran a 5K.

My albuterol use has also decreased, which is wonderful.  I did over 200 neb treatments last month alone and would love to eventually get down to just four a day in the next couple weeks if possible.  For now I need to continue focusing on resting up, doing appropriate amounts of physical activity every day, stay on top of my school work and be ready for SARP.

Hooray for weather

In the midst of my summer-long asthma exacerbation I thought would never end, I finally caught a break courtesy of Mr Weather.  While it’s been hot and hotter for weeks and pollen/mold counts have been off the charts, we finally caught a cold front which brought the temperatures down 30-40 degrees and the ragweed is taking a break.  It may not seem like much, but for someone like me with horrendous allergies, it’s a Godsend.

anchorman_brick_weather

My Peakflow numbers have been stuck mostly in the 300 to 500 range for weeks and yesterday I hit 590 for the first time since July after a nebulizer treatment.  Now this temporary high was short lived and I was back down to 450 an hour later, but I’m still marking 590 as the high for the day.  On top of all that, my oxygen saturation leveled out to something reasonable and I only used albuterol 6 times where I’ve been doing 8 most of the week down from 9 or 10 previously.  It’s the little stuff that counts.

Today hasn’t been as great.  It was a little warmer, the plants were more active, and I had a bit of an allergy attack.  I did get 8 hours of sleep though, in shifts.  I think that’s the most I’ve slept in over a month and even though I woke up at 380 and 400 respectively, taking the edge off the exhaustion was totally worth it.  I need to see how I am tomorrow before deciding on work for Monday.  I’d love to be back, but I made the mistake of going back too early several times earlier this summer and paid for it dearly.  Other than that I’m just counting down the days until SARP.

New treatment options

Since I last saw my pulmonologist I’ve been in the Emergency Room four times and admitted once.  First thing out of his mouth was, “Wow, you’ve had a rough two months!”  We talked about what’s been going on, symptoms, how the meds are working, prednisone, etc.  Dr M said it was obvious every time my taper gets down to a certain level everything flares up again.  He said I basically have three options.

  1. Go to an asthma clinic and get a full work-up.
  2. Look into bronchial thermoplasty
  3. Become steroid dependent

I first heard about bronchial thermoplasty three years ago.  They’ve been doing it in Europe for a while and FDA has approved it for use in the US.  The quick explanation is they scope a wire down into your airways using radio frequencies to heat up and burn away extra tissue.  This assists with the extreme swelling and inflammation many of us asthmatics deal with on a regular basis.

Steroid dependency is needing a small dose of prednisone or another steroid on a regular basis.  This is different from using inhaled corticosteroids as an inhaled maintenance medication.  I’ve been on prednisone 80 some days already this summer so continuing would be an easy step.  Dr M would rather not have to resort to that right now at my age, but we’ll see.

Dr M was really intent on option #1.  He talked about some of the different centers in the area and how beneficial it would be.  He welcomes second opinions and would like to consult to make sure he, Dr K and Dr J are all on the same page with treating me.  He was all ready to call up the Cleveland Clinic and get something scheduled when I finally had the chance to inform him I’m heading to Pittsburgh in 10 days to participate in SARP and see Dr W.  Dr M likes that I try to stay on top of things.

So for now we’re going to see how Pittsburgh goes and what they find.  I’d rather not stay on prednisone forever, but it’s better than visiting my friends at the ER every week and much less drastic than the bronchial thermoplasty.

Severe Asthma Research Program

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.