The SARP experience

Welcome to Pittsburgh, Pennsylvania for the Severe Asthma Research Program

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(I just noticed what it says on the pillow)

Well, the trip was a success and the project went off without a hitch. However, the results that emerged from some of the studies they did on me wasn’t so good.

First , the good news…..

I finally got to meet Dr. Sally Wenzel (up close and personal you might say, considering she analyzed my DNA and probed around inside my lungs). It’s difficult for me to find just the right adjectives to describe how I feel about her, so I’ll just say … I love this women! She’s like my pulmonary physician soul mate. I admire her, not only because she’s an awesome Pulmonologist and research scientist, but mainly because of her fiery personality and the passion she has in trying to understand asthmatics and what makes us tick. And get this….she’s a good listener too! She actually cares enough about what you have to say, that she takes the time to listen. Imagine that.

I think Sally (Dr Wenzel) probably knows more about asthma pathology and the personalities of asthmatics in general, than any non-asthmatic person Ive ever met. It’s absolutely uncanny the things she knows about our disease and how we behave and live. She understands things about asthmatics that they don’t teach you in medical school. Things that you would only know by interviewing thousands of us and immersing yourself in the severe asthma culture. I could spend literally days just talking with her about this subject. We seem to teach each other. I am so lucky that I was given the opportunity to hook up with her. I think we will be friends for a long time.

Me and Sally

The accolades don’t stop with Dr Wenzel, there were dozens of other wonderful people involved in this study as well. Here are just a few that Id like to mention by name and position.

Erin———–SARP research coordinator extraordinaire.
Cathrine RN—-Dr Wenzel’s assistant and other right hand
Mat tech——Very cool PFT tech.
Celo tech—–Just one of many super cool people on the bronch team
Trish RN——-A special Nurse. She actually called in on her day off to see how I was doing.
Lindsey RN—–Probably the sweetest Nurse Ive had the pleasure of meeting
Chuck RN——They don’t get better than this “young man”.
Rose RN——-Kind, Kind, Kind!
Michelle RN—-A Super Nurse.

To the above people , Id just like to say Thank You!
In all the years that Ive been in and out of various hospitals and clinics, Ive never come a cross a better team of compassionate and caring medical professionals like those associated with the SARP study, especially the people who took care of me in the Translational Research Care Unit at UMPC after my bronchoscopy. Kudo’s to you guys!

As for the SARP study itself, well, it’s probably the best coordinated and well thought out research experience Ive ever been a part of. With so many ancillary departments involved, like Nuclear Medicine, Pulmonary Functions and Diagnostics , it’s amazing how smooth the whole system runs. Everything is coordinated and timed down to the minute. In the bronchoscopy room, they actually had a group of lab personnel standing by in their running shoes, so that they could literally run the tissue samples over to the lab the moment they they were removed from my body. This method ensures that the samples will be ultra fresh. (I think).

Btw, if you’re not familiar with this part of the Country, the University of Pittsburgh and it’s affiliated medical schools ,hospitals and clinics, is massive in size. More like a small city, I counted at least 4 city blocks of medical buildings 2 and 3 deep. Some the size of mini skyscrapers, all connected through a series of enclosed pedestrian bridges. Pretty neat since it snows here in the winter.

Here’s an abbreviated version of my actual testing itinerary:

Wednesday Afternoon: Completed a ton of questionnaires,did a verbal interview, and did pre&post bronchodilator spirometry, sputum induction attempt.
Thursday: Allergy skin testing (scratch test, not sub q), Full PFT ( lung volumes) pre&post bronchodilator.
Friday: Bronchoscopy prep, ( ie pre-medications and neb treatments), then nasal brushing, then the actual bronchoscopy with brushings and biopsy, but no lavage because of the potential side effects, more pfts
Friday Evening-Saturday,:Monitored in the hospital overnight.

As with any long distance trip , I didn’t eat or sleep very well and I’m totally worn out, but the effort of getting here to Pittsburgh to do this study was totally worth it. Definitively a positive experience and I would gladly return again if asked.

(Matthew, myself and Erin in the PFT lab)
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(Chuck and Trish, two of the best nurses in the world)
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Look at all the blood they took from me
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(And check out this reaction I had to Grass allergen compared to tree allergen,which is the little dot to the left.)
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Now for the not so good news….

Because this was the first time Id been bronched since early adulthood, it’s really the first time anyone has ever seen the damage that decades of severe asthma exacerbations had caused. What she saw was lung anatomy that had undergone extensive remodeling. My airways appeared very scarred, stiff and fibrotic in nature…. seems my disease is a little more advanced than previously thought. She actually found it quite amazing that I was still able to function as well as I do, let alone still alive. What was baffling to me, is that she couldn’t find any physical evidence of COPD or emphysemic changes that I often thought I had. Seems I have pure asthma and nothing else. It will be a few more weeks before they’ll have a final report, as they sent bits and pieces of my lung tissue and blood samples to various university labs for analysis

( here’s a photo taken looking down into my left lower lung lobe)
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Dr Wenzel recommended that I seriously consider lung transplant somewhere down the road. We all agreed that I’m not even close to that point right now, but that when the time comes, I shouldn’t procrastinate, as the waiting time for new lungs can take 1-2 years (asthmatics are usually put at the bottom of the list.) My one saving grace so far, is that my blood oxygenation is still really good(probably from all the aerobic exercise I do), and I’m still able to exercise, though that probably won’t be the case for very much longer.

Who knows, maybe someday I’ll be able to RUN the Boston marathon … instead of walking it!

Update as of 12-15-2009: Results from the computerized quantitative lung scans, did indeed show significant air trapping.

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22 Comments

  1. kerri says:

    LOVE that pillow! i think we all need those sitting on our couches in our living rooms . . !

    Definitely sounds as if you had a packed few days [even more-so than I gathered from our e-mails! Thanks for keeping me updated, btw, with the whole almost-real-time summary of what was going on.] Wow.

    I'm sorry about the FEV1 and bronchoscopy results. Regarding transplantation, I know it'll be a tough decision . . . I'm sorry you have to make it. :(

    Massive hugs, love and prayers comin' over from Canada, Steve.

    • Thanks Kerri, I'm still actively editing this piece, I might add more later. ( So much transpired, that I'm just now remembering.) Anyways, it was good chatting with you in between all the procedures. Its exciting to travel and all, but at the same time can get lonely too. It sure helps when you have good friends to connect with.

    • Btw…..I finally got the name on that wing joint correct..It's called "Quaker Steak and Lube" I think they're a chain

  2. Danielle says:

    Holy Dinah… big decisions. You must be reeling right now. Take care of yourself, we're 100% behind you.

    On the other hand, the SARP study sounds like an amazing experience and I'm jealous for a few reasons. I'd love to do something like this. I'd love to run this study AND take part in it, LOL!

  3. marsh says:

    soooo much to wrap your mind around????? scary too???? and yet you seem ok and at ease and to think i was just startin to under stand that air trappin thing well get some well deserved rest and know we're all here if you need to talk or listen????? marsh

  4. Olive says:

    hey there,

    you must have thoughts buzzing round your head like all sorts. Im glad you had a great experience meeting the pulmenologist and all the medical staff there were great. Wish all drs and nurses were like that.
    Just take your time making decisions. People will always be about to support you but no one can make the decisions for you.
    take care

    Olive

  5. Steve Ferkau says:

    Hey BreathinStephen!!! Another BreathinSteven here!!!

    But — I'm a CFer (cystic fibrosis), not asthma — though I do have a friend with severe asthma who received two lungs a few years ago…

    I know you've got some big, serious decisions coming at you. I imagine, with all of your scaring and fibrotic tissue — a lung transplant seems an obvious route in the future… If you choose to go that way, I sincerely hope that your journey is as wonderful as mine has been… I received two beautiful, new lungs almost 10 years ago — after living almost 40 years with cystic fibrosis lungs, my lung capacity was somewhere between 10-15%, I was in CO2 retention, my O2 saturation on 3 liters was in the high 80s, and I wasn't moving anywhere quickly… That's not the case anymore — and this breathin' stuff blows my freakin' mind every single day — it's been 9+ years and I still think about it constantly… (continued…)

  6. Steve Ferkau says:

    (part II) I hope you're relatively stable and hanging in there… The wait can be a total crap-shoot. Yes, the LAS/Lung Allocation Scoring may push an asthmatic to the bottom of the list — I'm not certain how it works with that particular condition — but as you get worse, asthma or no, you generally move up the list — and, distribution is also based on availability, blood type and body size, and sometimes, you just happen to be the only one your size & type in a particular region and you get the call… You hunker down and wait, but there is also an awareness that it can happen at any time — I hope that, when you're ready, your call comes soon…

    It sounds like you're in pretty darn good shape anyway – you stay that way as much as possible… Keep your weight in the right range, and keep as active as possible – all of that will contribute to a fast recovery. The support and care surrounding you leads me to believe that you will sail through this quite well… You're in my thoughts.

    Love, Steve

    Steve Ferkau
    Chicago, IL

    • Hi Steve, Another Breathin—STEVEN .. very cool. Thanks for writing and Congrats on making it 9 years with your new lungs, That's amazing! . Actually, I read your story several years ago and was truly inspired. Didn't you climb some tall buildings right after you got your lungs? Im not nearly as severe as you were at the time you received your new lungs. My FEV1 is still in the 30's and I function remarkably well without O2 (Boston marathoner), but after looking at my lungs from the inside, the concern from my pulmonologist in Pittsburgh is that this good breathing streak wont last much longer and that I really should consider transplant as an option before I deteriorate too much. I think Im just gonna wait and see how it goes over the next few months. Right now Im not totally convinced that I wanna go the transplant route, but as my disease worsens, Im sure I'll think differently about it.
      Thanks again for writing. Here's to your reaching 10 years and beyond!

  7. GayleMyrna says:

    Hi Stephen: Glad you accomplished your trip to Pittsburgh…what an adventure! Anyhow, my thoughts are with you whatever direction your medical treatment takes you. Back here in SoCal, I am in a flare-up. So coughing up lots and lots of stuff…may have gone from asthma into bronchitis now. Am on pred and nebs and see my doc again Wed. But more stable today than past couple days. Meanwhile, keep on keeping on !
    GayleMyrna

  8. Steve Ferkau says:

    Hi Steve! A little faction of my team just climbed the Sears Tower (103 floors, 2100 steps…) and this will be my 8th climb up the Hancock (94 floors, 1650 steps) — and six of my donor's friends and volleyball teammates will be climbing with me! We're already signed up for 2010.

    I would be right along with you in waiting it out for a bit. Learn about it, get prepared, but who knows what treatments for asthma, COPD and fibrosis might come out in the next few years – you may dodge it, but you'll be ready if you don't. I'm amazed at what you do with your current lung capacity – I also know that your persistence and dedication give you the ability to do all you do… Keep moving!

    Love, Steve

  9. Elisheva says:

    This is something I've always wondered. If an asthmatic gets implanted with new asthma-free lungs, will they not have asthma anymore? Or vice-versa – if a non asthmatic person gets asthmatic lungs (say mine, which as far as I know have no irreversable damage, just tend to close up sometimes), will they have asthma or will the lungs work fine for them?

    I wish you the best in whichever route you decide to take.

    Elisheva

    • Great question! Assuming that the new lungs are disease free, then I wouldn't have asthma anymore. I'll have to ask Dr Wenzel about the other half of your question. But, I would imagine that they would not transplant diseased lungs ( ie severe asthma). If the donor had mild asthma, it probably wouldn't make a difference, I would still be better off.

    • Here's Dr Wenzels response to your question

      The LITTLE (and very little) bit of data that exist, say that the asthmatic lungs (the old ones) stay asthmatic, but NEW/GOOD lungs transplanted into asthmatic stay new and good (nonasthmatic)… But really not TOTALLY known, as so few asthmatics have been transplanted!

  10. jean says:

    Hey, enjoyed your blog. My daughter and I are both patients of Dr. W., My daughter has been seeing her since her arrival in pgh. We too just love her, she is a total 'rock star'. My daughter is 16 and will be getting a brochoscopy in the very near future. Hope you are well.

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