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No matter how well I take care of myself

Not sure what’s going on. Since 2003 when my asthma started to get really bad, it was for the most part, relatively stable and the symptoms tolerable for several months at a time. Even the exacerbations, while still very severe on occasion, were somewhat predictable. Likewise, my lung function, specifically my FEV1 and FVC, though pretty crappy, seemed to plateau in the 37-44% and 60-70% predicted range respectively. Exercise, ie walking, I think played a huge role in maintaining that stability . But here it is 2016 , and almost on the turn of a dime, I seem to have fallen off the proverbial asthma cliff. My PFT numbers have dropped another 10% and there doesn’t seem to be such a thing as a minor flare up anymore.

If you’re reading my blog for the first time, Im a life-long, exacerbation prone asthmatic with a high frequency of flare ups, which have increased significantly over just the past couple of years. Between Jan 2015 and Jan 2016, I had 9 severe exacerbations, about one every 6 weeks. Of those 9 exacerbations, 7 resulted in hospitalizations, 3 of them requiring intubation. This is crazy, something has to be done to help cut down on these numbers, both in terms of lowering the associated healthcare costs and the huge toll that all of this is taking on my body, my emotional health and quality of life. I can’t keep going through this. Im so sick of being sick.

So why is this happening, and why now? What’s changed in the last 2 years? Is it because Im getting older? Is it because Im not able to walk as much as I did just 2 years ago? Is it because of environmental changes? Is because my asthma is getting worse? I just dont know, nor does anyone else. In terms of exercise, it’s kind of a catch 22. I haven’t been able to do any long distance walks or marathons since late 2014, mainly because I keep having bad exacerbations and have been more short of breath. As far as changes in the environment goes, the pollen counts in 2015 were sky high where I live. Then there’s issue of whether my asthma is actually getting worse. If that’s the case it’s another catch 22, because the more and more exacerbations I have the more it effects negatively impacts my lung function. The lower the lung function, the less reserve you have to deal with exacerbations.

Contributing to the high number of hospitalizations, at least partially, is a problem that many chronic asthmatics face. And that is, not knowing exactly when, or if, they should seek hospital treatment for a bad flare up. At what severity level should you go to the ER? Do you go in right away, or do you wait until you’re really struggling? If I delay or don’t go in at all, will the flare get better with just standard home care treatment? That’s the thing about an asthma exacerbation, you never know how bad it might get. And the more near fatal exacerbations you have, the more likely you are to err on the side of caution and go in early. During this last flare, had I opted to tough it out home, I would have probably died or ended up a lot sicker. In the end, it’s a total judgement call as to when to seek hospital care. All I can do is go by how I feel and by what my peak flows and O2 sats are doing, and hope I made the right decision. Sometimes I get it right, sometimes I dont. As with so many aspects of this disease, you’re damned if you do, damned if you don’t.

It’s frustrating and depressing because I do everything I can to stay healthy and prevent exacerbations. I take my medications, I avoid as many triggers as I can, I eat right, I exercise as much as I can every day and try to keep a positive outlook on things, but still I get sick. Im sure my lung function isn’t helping matters,it’s so low that even a mild flare up can throw me over the edge. And worse,because Im chronically short of breath, sometimes I don’t even realize my symptoms are getting worse. It’s all so messed up.

So anyway, faced with these increasing number of hospitalizations and the very real possibility of actually of dying during one of them, my doctors are trying to help find something…ANYTHING, that might offer help and reverse or slow this worrisome trend. We’re gonna discuss the feasibility of trying me on one of the new biologic drugs, possibly Dupilumab, which Dr Wenzel has conducted a lot of research on. The problem is that it hasn’t been approved yet by the FDA, so in order for me to receive it, they’ll have to apply for a compassionate use waiver. I have a follow up appt at the chest clinic at UCSF later this week and will hopefully learn more about what the game plan is moving forward.

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8 thoughts on “No matter how well I take care of myself

  1. Dear Stephen

    I’m very sorry to hear that things have not been going well for you. We’ve never met, but I was deeply grateful to you three years ago. I came across your blog in which you talked about Dr Wenzel and SARP. I was a real mess at the time – very severe adult onset asthma, needing 80 mg bursts of prednisone every 10 days. I’m a physician, and suspected that I had Churg Strauss syndrome, but could’t get anyone to take me seriously locally. I needed a bronchoscopy, but couldn’t get one. Dr Wenzel did a bronchoscopy as part of SARP – it showed 50-60% eosinophils (normal <1%). I ended up being confirmed as having Churg Strauss at National Jewish (Dr Wechsler).

    I do hope that you can try one of the new biologic agents. I started mepolizumab at the beginning of January, and for the first time in 3 years, have been able to wean my prednisone dose below 15 mg.

    I think Dr Wechsler is going to be starting a clinical trial of dupilumab at National Jewish, if things don't work out at UCSF.

    Look after yourself, Stephen, and I hope that things turn the corner and you start feeling better. If I ever bump into you in Pittsburg (I still go out for SARP) or elsewhere, I owe you lunch – I was desperate when I came across your blog.

    Best wishes, and many thanks

    Anne

  2. Hi Anne,
    It’s so nice of you to write again.

    And of course I remember you. Im SOOOOOO happy that the mepolizumab seems to be helping you. I know a couple other people who’s lives have changed dramatically because of that drug. Fingers crossed that you’re able to completely come off the steroids at some point.

    Unlike you, I have NO eosinophils, so Im not a candidate for any of the dupilumab studies, unless they get a waiver. I hope to find out later this week. All these drugs are a shot in the dark for me, but it’s worth a shot .

    Please let me know how you’re doing over time.

    Xx Hugs

  3. Dear Stephen,
    My heart goes out to you . My husband 76 been diagnosed with Asthma 10 years ago . It run in his family , his older sister died at early 50 from this trouble disease . He was doing relatively ok with 3 to 4 flares up per year that was treatable at home by low dose of prednisone 50 mg tapered down for 20 or 10 days . But this year late January he had a severe attack that required his first hospitalization for 6 days followed by a 20 days tapered prednisone . He felt so much better only for 2 week and now his trouble started all over again . How can he gets that bad in less than a month after a hospital discharge ? . We went to the doctor yesterday and he confirmed that his Asthma was flaring up and suggested another course or the Prednisone . My heart is out for my dear husband as I heard him coughing almost all night I spite of using the rescue inhaler every 4 hours . The doctor did not ask him to go to the ER . I am scared and don’t know what to do for him except follow the doctor order and look for signs of what to come next . My husband has other health related cardio problems but was relatively active all these years. I am scared !
    God help you and those who are suffering from this terrible disease

    1. Thank you for writing. Im so sorry to hear about your husbands asthma. I feel for the both of you , as Ive been through this so many times.

      Unfortunately, it’s all too common for asthmatics to re-flare ( what we call rebounding) when they’re weaning off the steroids. I think part of this is due to all the stress one’s body goes through during a bad exacerbation. That, plus steroids lower the person’s immunity making them susceptible other illnesses which can trigger asthma symptoms all over again. Finally, steroids work so well in reducing inflammation in the airways, that after a period of time the body gets “used to” them, so that when the dose is lowered, symptoms come back. It’s an awful cycle. It’s so important to keep steroid use to a minimum.

      Wish I could be of more help, but it sounds like his doctor is on top of things. Im assuming the doctor is a pulmonologist? If not, he really should be seeing one.

      Hang in there!

      Steve

  4. Dear Stephen,
    I knew it was bad. I had been through this crap before, I knew. Since I was little, cord was cut & bad lungs were hatched.I should have known better…I’m in medicine ..I’m wicked smarrrrt as they say in Boston. Raised 5 kids who had GI bleeds at 6 weeks (oh, I am also a saint) I fell in love w/ medicine & became a physician assistant. Boston hospitals…Mans Greatest Hospital, Floating, so many white coats …so many healers…so many teachers. I watched providers practice with their mouths open ( not good) shut (much better). feel in love with it. I work in a jail, loads of fractured souls, just my cup of tea. Find they like everybody, will tell me their dx if I let them. So back to…me..I waited …and while I waited and after a lot of years of bad lungs, and as hospital patient / hospital provider I thought I’m done. I do not want to do this anymore. I don’t want to practice my medicine anymore, to practice is a privilege but my peers feel it is more their right, tired of defending my way because it is weak..” tired of trying to pull myself up by the bootstraps just one more time cuz you know” it’s only asthma” ( side bar…I’m in hospital on biPap and they still have me on call…still” ) Asthma was winning and you know I almost let it….and then I found your blog. So thanks. You took me off the hook. As long as there is just one someone out there that gets it…Angels can ask no more. I am now using the nebulizer with the Dora the Explora mask (grandsons) because I can, remembering my last stay in the hospital (which coincided with my 60th birthday) and thinking “You know I really should have done those Kegals…..cough…. pee…cough…repeat…) Asthma is not for the weak of heart but I thank you

    1. Wow, how very kind of you to take the time to write such a sweet comment Eileen, Thank you. I just had a real crappy couple of years, but Im actually pretty stable at the moment, no hospitalizations in the past 6 weeks !

      Im sorry to hear that you’re in the hospital. Do they use the Aerogen nebs there? I found that they work much better than the conventional ones. Im rooting for you to get over the hump quickly, so that you can out of that place and back to your family. Let me know how it goes. Xx
      Steve G

  5. Very conventional. I am being forced d/t time, circumstances, events and a basket full of fear!! to follow up on a couple of “things” :like my Alpha-1 Antitripsyn thing, a family history described as an epic pulmonary train wreck, asthma deaths, Mom passed from Pulmonary Fibrosis, Lung CA ….a spontaneous cardiac death at 48 … to do some leg work…
    Oh and one more thing…where I have been with my distress over
    conventional medicine when you mentioned Dr. Wenzel I had to laugh I have been looking into getting into his Integrative Medicine program for the last 2 yrs!

  6. Very helpful info, especially about pulse ox levels and asthma flares. Was diagnosed with asthma in my forties, after severe bronchitis and breaking a rib from coughing.
    I am 68 years old now.
    In the past few years I discovered I could reduce or eliminate asthma flares by changing my diet. Almost eliminated dairy and wheat. Milk brought up phlegm and wheat gives me heartburn.
    Had to use albuterol inhaler for first time in months, perhaps because I am fighting an incipient cold and a high pollen count. So I chowed down on salad which included local weeds from my yard like dandelion, dock, prickly lettuce, and purslane. Greens have proven anti-inflammatory properties, so I turn to them to reduce my vulnerability to asthma in the face of life stressors such as caring for a sick 97 year old friend and neighbor.
    I’d appreciate any comments on the idea that asthma flare-ups can be caused by cumulative stressors, including food intolerances and a sub-optimal, pro-inflammatory diet.

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