Life is hard in the FEV1 30′s, but…

Being sick for long periods like this, often has me thinking about lung transplant surgery and how wonderful it would be, at least in my mind, to not have to struggle to breath all the time. This month also marks the one year anniversary of my initial SARP work up, and the infamous meeting of the minds over at UCSF. At that time we had all decided that my disease wasn’t severe enough to be considered for transplant, and even if I did meet the criteria, I had pretty much made up my mind at that time, that transplant surgery was something that I wasn’t interested in. Well that was then, this is now.

Here I am a year later, getting more breathless everyday and starting to seriously re-think my earlier decision. But wait… even if I were to change my mind and actively pursue lung transplant surgery as a treatment option, my current baseline FEV1 of 35% is still too high to qualify. And if I’m suffering this much in the mid 30′s, I can’t even imagine how bad it must feel to be even lower.

The fact is, most people on the transplant waiting list have FEV1′s in the 20′s and sometimes in the teens. The majority are also on supplemental oxygen 24/7, and some of the sickest people are even on ventilators while they wait for donor lungs. I only require oxygen when I’m actively flaring and my FEV1 rarely drops into the 20′s unless I’m really really sick and Ive always managed to bounce back. [This whole oxygen criteria thing shouldn't even apply to an asthmatic waiting for transplant. The pathology of asthma is much different that Cystic Fibrosis or COPD. Asthma is a disease of the airways, not the alveoli. Most asthmatics don't require supplemental O2 unless they're actively flaring].

I suppose I should thank my lucky stars that my FEV1 readings are still in the mid 30′s, and occasionally even into the 40′s, but as good as I have it in comparison to those waiting for new lungs, life in the the 30′s is not exactly a picnic. And the fact that my lung function has dropped almost 30% in 6 years, tells me that my numbers will only continue on that downward path. It’s not a matter of if they will drop into the 20′s, but when .

Living in the 30 percent range is like living in a kind of breathless purgatory. Your days are filled with this bothersome low-level breathlessness which doesn’t get too severe unless you’re flaring, but nevertheless is always there in the background effecting everything you do and making you miserable. In the 30′s percent range your lung disease becomes so advanced that most conventional therapies or medications no longer work, yet you’re not quite sick enough to qualify for transplant. Now, if I had emphysema and had lots of air-trapping, I would be a perfect candidate for LVRS or airway stents. But, I don’t have emphysema, nor do I have the type of hyperinflation or air-trapping that could be helped with airway stents. I have severe asthma with fixed obstruction and there’s very little that science can do for people like me.

There’s another criteria for lung transplant surgery that creeps me out a little, is the longevity issue. How long can I be expected to live if I do nothing? Ive had doctors give me predictions of as much 10 years all the way down to one year. In order to be a transplant candidate at centers you have to have a life expectancy of less than 18 months. Most transplant centers base that prediction on a BODE score of 5 or more.Currently, my BODE score is a 4. The problem is that these mortality indexes don’t really apply to asthmatics. Since asthma is a disease of the airways and not necessarily the alveoli, a severe asthmatic, even with extensive lung scarring, can linger on indefinitely. The question really becomes then, will a severe attack kill me before the natural progression of the disease and/or old age does?

I know I should be grateful for all Ive achieved through fitness and pure stubbornness, but sometimes I feel like I’m being penalized for doing the right thing and staying in shape. Had I not done all these healthy things, my FEV1 would have surely declined faster, putting me in a position where Id probably be eligible for transplant by now. Let’s face it, not too many people with an FEV1 of 35% have completed 7 marathons. What’s really ironic though, is that potential lung transplant candidates are scored on their level of physical fitness. Transplant centers want people who will be healthy enough to survive the wait time, ( up to 2 years in some cases), the surgery and the recovery. The stronger you are going in, the better the results. How that’s possible with an FEV1 in the 20′s or teens is be beyond me, but that’s the way it is. I have the required physical and mental stamina now, but will I still have them when my other numbers finally catch up? And even if I do meet all the criteria, will it happen in time?

So as I’m getting ready to finish the closing paragraph of this post, the “But” part of the title hits me in the head like a ton of bricks. Life sucks with an FEV1′s in the 30′s, but I’m not to the point yet where I dread waking up everyday. I’m not to the point where everything I do is a total struggle. I still have the occasional “good breathing day” (or “not so bad breathing day”, whichever way you want to look at it). I’m not ready yet to trade my lungs in for a pair that may, or may not give me more of those precious “good breathing days”. But most importantly, and regardless of all the other criteria, I know I’m not ready for a lung transplant, because I’m still questioning whether I can live without one. I’ll know Ive hit my rock bottom when life is no longer worth living…it’s as simple as that! I can see now why they set the transplant bar so high. It’s meant as a last resort, not a treatment option. So on that note, I’ll stop crying poor me and get on with life.

And as far as predicting how long I’ll be able to continuing walking, who knows, but it sure would be cool to rack up 3 Bostons in a row, before throwing in the towel.

UPDATE: On April 18th, 2011, I did indeed finish my 3rd Boston marathon in a row.
Also, on Aug 15th 2012, I was re-evaluated for lung transplant. I’m still too healthy to be listed, but am now being followed in the pre transplant program at Stanford University. My FEV1 is holding in the low 30s. Im no longer able to do marathons, but I still walk 2-3 miles everyday when I’m feeling well enough.

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26 Comments

  1. Laura says:

    Stephan, you are an inspiration to a lot of people. I know my lung problems aren't near as severe as yours, but I do know what you mean. Sometimes that feeling when you think please let me have new lungs so I can breath as easy as the next person.

    Praying for you daily.

  2. kerri says:

    Hey you,
    I'm sorry you have to even think about this kind of stuff, Steve. I'm hoping for many brighter days ahead.

    Lots of love and prayers.

    • Hi Ms lovely, Thanks as always for the kind words.
      Dr Wenzel is gonna refer me for another transplant eval at UMPC. I think with a clearer picture of what my options are, I\’ll be able to make a more informed decision and be less stressed about this. I\’m hoping to fly out there within the next month or so. While I\’m there I\’ll do the SARP follow up. Not sure about the half marathon in May. Will have to play it by ear.

      • kerri says:

        Makes total sense. Keep us [by which i mean ME, of course!] posted on everything.

        [Pittsburgh in May is looking like a big IF in my books too if I head to the Bay Area in February ;-), but I mean, May is a long way off. Although my mom is seeming like she is in support of this going-to-Pittsburgh-to-be-studied shindig :-)]

        <3

  3. Steve Ferkau says:

    Hey the other BreathinStephen!!!

    Whoa– you've got lots to consider!!! To so many of us with respiratory issues — you've performed amazing feats!!! And you've doubtless got a few more up your sleeves still…

    You're right — the wait can be up to four years, and sometimes because of the lack of organ donation and donation awareness, it doesn't even happen… But, the new allocation system that was adopted in May of 2005 works in the favor of lung transplant candidates as they get sicker… What used to be a pure wait-list, has now been given priorities so as you get into deeper trouble, you're bumped higher on the listing…

    (Continued…)

  4. Steve Ferkau says:

    And the whole issue of how long can you be expected to live if you do nothing is always a consideration… Maybe, if you do nothing, you'll have five years. The last few of those five years likely won't be that pleasant — yet, people like you and me still somehow seem to make them valuable… On the other hand, instead of five years, do you want to take a risk somewhere between one and two years — that may bring you many more years in amazing condition, or may being you a few more years in questionable condition, or may not… (Though the odds of success are still in your favor…)

    Many centers are extending their recipient criteria — yes, some seem to have a cut-off of 60 years — but others are now looking more closely at the condition of their patient. You, I have to believe, would be a strong candidate… On a number of occasions I've met and shared a podium with a 70+ year old guy who was transplanted in his mid 70s at Mayo in Minnesota… Centers are beginning to look beyond age as a number…

    (Continued…)

  5. Steve Ferkau says:

    Stephen — I lived almost 40 years with my crappy, cystic fibrosis lungs… My FEV1 was around 0.4 to 0.5 and my FVC was between 1.2 and 1.4 when I was listed for transplant, almost three years before I was transplanted… I'm over 10 years post transplant now. My FEV1 this morning was 4.04 — my FEV1 was 4.91 — Ten times what it was — it often makes me well up when I type something like that… But it's more than numbers — last Sunday I took the stairs 103 floors to the top of the Sears Tower in Chicago — last night I went ice skating at Millennium Park in Chicago. It's been over 10 years, Stephen, and this breathin' stuff blows my freaking mind every single day… My recovery and my life afterwards has been rather amazing and I might be a bit of an anomaly — but many of us have pretty incredible success post transplant…

    (Continued…)

  6. Steve Ferkau says:

    (Continued…)

    If you choose to go this way — I hope that your journey is as amazing as mine has been… I have a feeling that, if you do go this way — I'll be seeing a lot of press about a double-lung recipient completing marathons and Ironman competitions and other equally amazing stunts!!!

    Whatever you do — whatever decision you make — I'm proud of you for all you've already accomplished… You KNOW that a part of me hopes that you choose the transplant route — and I hope that, ten years from now, you're walking around in awe of what it feels like to breathe freely and "normally" — and I hope that, like me, it never feels "normal" to you…

    Love, Steve

    BreathinSteven

    • Hi Steve. How's my favorite lung transplant recipient/ skyscraper climbing person / all around nice person doing? You wouldn't believe how much of a role you've played in decisions Ive made regarding my lung health. Your story is wonderful. I cant imagine walking up 2 flights, let alone 100+. Just the thought of breathing "normal" on a routine basis, blows me away. The thought actually scares me ..how weird is that.

      I haven't made up mind about transplant, mainly because I still have good days, but also because last year when my doctors and I discussed it, all I heard were the negative things. According to the people at UCSF , outcomes like yours are very rare.

      Anyways, in a couple of months I'm going to be re-evaluated at the University of Pittsburgh ( if my insurance will pay for it) I'm hoping that by going through the entire eval process ( 6 days) that I'll have a better idea of where I stand and what I want to do. ( My favorite lung doc, Sally Wenzel just happens to work there too) .If by chance I get accepted and decide to go forward, I will actually have the surgery done there, which means I'll have to move to Pittsburgh for up to a year . My follow up care I can get here.

      Hey, thanks for continuing to read my stuff and for believing in me. I hope I can muster the same kind of motivation that you have.

      Steve

      • Steve Ferkau says:

        Hey BreathinStephen!!! Yup — I keep telling my wife I'm one in a million — and she keeps questioning me why in hell she got stuck with me!!! (We've been happily married for 21+ years…)

        I agree that outcomes like mine are rare. I think they're becoming less rare, but I have been exceptionally lucky. Still — the likelihood of getting a good ride out of this is pretty decent… And you're young — and you DO have the motivation I have — I'm in awe of the things you've accomplished… And you've got a lot more to accomplish.

        I may have been luckier — if I wanted to stay on this planet, my decision was made for me… I don't envy your position… But, at some time, you too may come to a situation where you no longer can see living in your current situation. I hope whatever the decision is, it comes with ease and peace… Love, Steve

        • You're FEV1 was 0.4 liters? That's unbelievable! Today, mine was 1.1 liters, almost 3 times higher than yours back then. The lowest one I ever remember having was .7 liters and that was during a severe exacerbation. My FEV1 typically runs about 0.9 to 1.3 liters

  7. mymusicallungs says:

    My FEV1 hovers around 1, sometimes above slightly and sometimes just below-but I seem to be coping and use the O2 PRN. Worst I've had was 0.7 and that was during a 5 month hospital stint in 2005/6.
    I do not know of any chronic severe asthmatics who've been transplanted. I only know of one not CF person who had a double lung transplant for ILD and sadly, is right back where she started 6 months post transplant.

    I just think it's such a huge decision I can't imagine going through it. CFers have to face this decision so much younger and it's also very often a normal with them to expect to have to go through with it. I can't imagine what you're going through thinking it's your only option as an asthmatic. Sheesh.

    The other thing that really concerns me with a lung transplant option, is just how sick they let you get before you get your call. That is also why I know so many people, who, God Rest their Souls, didn't pull through.

    It's a massive decision that only you can face or make, with Doug, Steve.

    I'm leaving nature well alone there, and praying I never get to your stage, selfishly. But of course we'll all support your decisions and wishes.

    XX

    • Hi Sus, I hope you re starting to feel a little better. I know youve had a rough couple of months.

      I know of only 2 asthmatics who have ever been transplanted, one was in her late 20 s at the time and lived 3 more years after transplant. The other in her 50 s and is doing well 5 years out.

      I realize I m not sick enough right now to be eligible for transplant, nor have I made a decision on whether I would want it done if I was. What concerns me right now, is that my lung function is starting to decline at a much faster rate than it ever has, and I would just like to explore all of my options while I’m still able.

  8. A lung transplant sounds very scary to me. I am not sure if I would ever be able to get the courage up to do it, if I ever needed to.

    I think about you often, I wish your breathing was better than it is now.

  9. erzebet says:

    Have you thought at other means of "replacing" your lung function like an artificial lung or pulmonary dialysis? It is true these are still in clinical trials, but you might think about these options as well.

  10. Randal says:

    I know what you mean. I have vanishing lung syndrome. I was only diagnosed just two years ago, and at that time, both my upper lobes were completely gone. Didn't even know I had anything wrong with me. I only found out because I had gone to the emergency room because I thought I was having a heart attack. My heart was fine, but the doc said he had something to show me on the x-rays, something he'd never even seen before. Well, lo and behold, my x-rays showed 2 giant black spots where my upper lobes should be. Long story short, I have a PFT done every 6 months, and my FEV1 keeps dropping. At this rate, I will have an FEV1 of 0 in just 7 years. However, this has not stopped me from doing the things I normally did before this. While I now have a killer shortness of breath, I still do quite a few things. For example, this weekend, I completed the reconstruction of my wooden shed, from 16×12, to 12×10. The project was an extreme undertaking for someone like me, but I completed it in just 10 hours, with no help from anyone. While gasping like a fish out of water is horrible, I just couldn't possibly continue to live, unless I live the way I always have. It's just that now I have a hurdle to wrestle with every day. As of right now, I'm at 34%, but I continue working (and playing) and living life too the fullest. A transplant may or may not be a good thing, but I definitely won't find out until I absolutely need one to continue.

    • Sorry that you have to deal with this. Are you a candidate for volume reduction surgery to remove the bullae or is lung transplant the only option?
      Do you have asthma as well? I commend you for continuing to stay active. This will be to your benefit should you ever decide to pursue transplant.

      Steve

  11. Dillon says:

    Hey stephen,
    I have some of same problems as you, but i have Cystic Fibrosis and my fev1's are always 32 or 33% and it has being a huge struggle for me in life, I figure they probably won't give me a lung transplant bc i am way to skinny for my age and height iam 5'4 weight 87 pounds and i probably would die for my surgery or wouldnt even get one, so i guess i will have to live a bad life not being able to play sports,not being able to get married or even have my first official girlfriend one day, only thing that keeps me going is 3 things Sports,Family,God, hopefully it will turn out to be a good thing one day.
    God Bless,
    Dillon

    • Hi Dillion. Sorry to hear that you;re so sick. I can totally relate. My FEV1 has been in the mid 30\’s for about 3 years now, but because my exercise tolerance is so good, I\’m actually too healthy for transplant.
      Are you on O2? Have you actually been turned down for transplant because of your weight?

      Feel free to write to me directly at breathinstephen at gmail dot com

  12. LC says:

    I have a restrictive lungs disease. My fev1 has always been around 13-15% range. Crazyness isn’t it? And now that I read people are suffering at 25 or 30. I wonder how the heck I’m still alive at 13-15%. I had a bad hemoptysis episode back in March 2012 and fev still the same. What the heck. I sure don’t feel the same as before though. Le sigh.

  13. Stephen says:

    Sorry to hear that you have PHT . You are indeed lucky to be alive with an FEV1 of 13%. My most recent FEV1 was 31% I can function fine on that. The problem is when I get sick it plummets to nothing. Are you a transplant candidate?

    • LC says:

      No. Unfournately I am not a candidate. I have kyphoscoliosis though that’s have been repaired it left me with bad lungs. I now live with these shitty lungs.

  14. Eldi says:

    Hi there, my name is Eldi. I know how you feel, my FEV1 is at 21%. I’m 34 years old, and I have been like this for the past 20 years. It’s so hard to live like this, but I got used to it. I really feel it when, I try to play with my kids and I just can’t keep up for even 3 mints with them. But life goes on, all we can do is keep fighting. I’m not going down with out a fight!!!

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"Can you have an asthma attack with a normal sat reading"?
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While it's a little unusual to see a person with a perfect O2 sat of a 100% during a severe exacerbation, its pretty typical to see sats in the 94-97% range. The reason for this, is that asthma is a disease of the airways , not the alveoli where gas exchange takes place. Most asthmatics dont desaturate during the early stages of an attack,unless theres a secondary problem such as pneumonia. You have to be extremely ill with asthma if your sats are low.

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