Monday, August 27, 2012

"It's Just A Number!": My Thoughts on Sharing PFT Numbers

Here I go getting myself into trouble again, but this has been on my mind for a while. This is not a shot at people who share their PFT numbers. If you choose to share your PFTs with others publicly, that's great. If you like to know other's PFT numbers are because it helps motivate you to be your best, then by all means, please continue to do so. All I want to do is share an opinion that I have and that I know others have too. Love and respect to all who read this.
As soon as you saw the title of this blog post, I know you got a little curious. And now, as you look at the picture to the left, you're asking yourself two questions:

1. What are Josh's Pulmonary Function Test (PFT) numbers?

2. Why aren't they posted as a part of the photo?


Both are valid questions, so let me start answering them by telling you a story I've only referred to in previous blog posts:
______

It was 1991. I was a "tweenager" at the time and the routine was always the same. If my sister, Angie, happened to be in the hospital for one of her extended stays, then my mom and I would go visit her as soon as my CF clinic appointment was done. We would stroll into her room and I'd have a big smile on my face, so proud that my numbers were off the charts and that my health was at it's peak, despite being a teenage fool and skipping many a med and treatment.

Angie's first words to me were the same at every visit, spoken out of concern and curiosity: "Hi (insert sisterly insult here), how was your appointment and what were your PFT numbers?"

Without a second thought, I trumpeted my numbers to her with such a callous tone as if they were no big deal and took little effort to accomplish. Not because I meant it that way, but because at the time it was the truth and I took it for granted. Normally, Angie would say something encouraging to me, giving me a high-five and a big smile. This time she was silent, but she managed to force a smile to her lips. I thought nothing of it as I maliciously changed the channel on Angie's hospital TV from "Oprah" to "Chip n Dale's Rescue Rangers". Our visits continued on their normal path without another awkward pause, save the needless argument about what to watch on the boob tube.

Later on that evening, many hours after we came home, I could hear my mother's voice as one side of a conversation trying to soothe the caller on the other end of the line. She was talking to my sister.


....

"I know it's not fair. You should be as healthy as he is too. I don't know why that's not the case."

....

"Don't you worry about his numbers. You're doing a great job taking care of yourself. I'm so proud of you and so is your brother."

....

"Okay. I'll be there as soon as I can tomorrow. I love you, Totsie."


I broke my sister's heart....AGAIN.

The next time I had a clinic appointment, Angie was thankfully at home, curled up on the couch watching a movie. When I walked in the door, she asked me that same question: "Hi (insert sisterly insult here), how was your appointment and what were your numbers?"

"They were good." I replied. "How are you feeling?"

It caught her a little off guard. I think it was the first time I ever asked her how she was of my own accord. Angie smiled and told me a little bit about her day and how she was feeling. The subject of my PFT numbers never came up again in that conversation or at any other time during the rest of our relationship.

_____

I think of that story every time I do a pulmonary function test. I look back at how different our lives were. How she had to fight for every breath and I had two decades where I was, for all intents and purposes, just the sibling of someone with CF. Yes, I had my CF issues, but they were measly in comparison to my sister. I don't have guilt over being healthy. My guilt comes from the fact that Angie never got that same breaks that I did. How every success I ever had was bittersweet for her because she saw what she was missing out on. She was never ever mad at me and she was always proud of me, but she just wanted to be healthy too.

With the CF Community developing this huge online presence, I see this scenario happening again...every single day. There's this push to share our PFT numbers within the CF Community and I think it's ludicrous...borderline insulting. Here's why:

First of all, the Pulmonary Function Test and it's coinciding numbers exist as a medical guideline for you and your doctors so you can visualize what kind of shape your lungs are in. It's the foundation for how you create YOUR healthcare plan because (and I'm beating a dead horse again, but I don't care) CYSTIC FIBROSIS IS AN INDIVIDUAL DISEASE. And while the PFT is meant to be performed the same way and under the same criteria at every CF Clinic, I guarantee you that's not the case. If I performed a PFT at 10 different CF clinics the results would be different every single time. That's not a knock on any CF Center. That's just the truth.

Secondly,—maybe this is just my opinion, but— asking someone about their PFT numbers is (or should be) a CF social no-no. It's no different than asking someone who's heavyset or rail thin how much they weigh or asking a potential date what their measurements are, how well endowed they are, or how much they make before you ask them out. This shouldn't be a necessary qualification toward acceptance. No one should have to feel the sadness Angie felt hearing my seemingly effortless numbers when she was trying so hard with limited success. No one should have to feel the guilt of where their numbers are at. I don't care if your numbers are off-the-charts fantastic or they're at transplant level, they shouldn't cause sadness. Especially if you're working your butt off to stay healthy.

What's that? You think it doesn't cause people pain and sadness? That I'm overreacting? Tell that to the parents I talk to who feel like they're failing because their kids numbers aren't like "Johnny with CF" down the block. Tell that to the young men and women with CF who can't breathe sitting in the hospital doing four treatments a day and countless nebulizers. In every group I'm in on Facebook, in every CF chatroom I've ever been to, there's a discussion about PFT numbers, so the heartbreak and (sometimes the bitter anger and resentment) keeps happening.

Guess what, CF Community? We're not in some @#$#% competition with each other. We're in competition with Cystic Fibrosis and the b.s. that comes with it. The picture at the beginning of this post is an actual copy of my documented pulmonary function test during a portion of my life. I didn't put any of my numbers on it because, quite frankly, it's no one else's business and because my PFT numbers are irrelevant to how your should view your PFT numbers and your journey with CF.

What you should focus on is what those lines are doing. What you should ask me is:

"Josh, what did you do to get your PFTs to go up?"

"Josh, what happened that made your PFTs go down and what are you doing to correct that?"

Those are the key questions that need to be answered. That's the info that needs to be shared. We need to support and help each other through our journeys. Not compare, contrast and criticize one another.

I'll leave you with this....

Back in college when my buddies and I used to enjoy drinking an ice cold adult beverage or two, we'd often ask each other: "Hey, how many have you had?"

Before we could reply, our friend Jim would always say:

"It's
just a number."

We'd all laugh, order another round and promptly hide Jim's car keys.

Now, nearly a decade later, whenever someone asks me: "What's your lung function?" or "What's your stats?" or "What's your PFT score?" I answer: "What does it matter? It's just a number."

It's just a damn number.

Peaceful and Honest Things,

Josh

25 comments:

  1. Thanks for this. I agree that you can't compare one person to another. I'm curious: where do I find the CF community? I read your blog and I've known one other person with CF, but I haven't found anyone to talk to besides that. I know there must be websites out there, right?

    ReplyDelete
    Replies
    1. There are lots of other places to find CF friends. There's Facebook. Find me and I'll introduce you to some people.

      There are also CF-specific sites like CF 2 Chat: http://www.cf2chat.com/e107/news.php

      and Cystic Life : http://www.cysticlife.org/

      Peace, Anna!

      Delete
  2. Great post Josh!!! I laughed a few times through it which is good. Love your sense of humor!!

    I think your story is a very unique story since you had a sister going through this same disease. I'm glad that you shared both sides of this. It was pretty interesting reading that once you said your PFT was good and asked Angie how she felt she never asked you again!!

    As far as the PFT test, its something I dread come clinic day. I always find myself thinking that my numbers should be higher bc I feel really good. For instance when I started using HTS I felt almost a 360 change. Mucus was moving out easier I had less of a cough etc. Then I go to my clinic and my PFT FEV1 only changes by 4 points. But like you said its just a number and it matters which way its going and for me its moving up.

    As my doctor says "John its only one piece of the puzzle!" So if you feel good, lungs sound good, sleep good, eat good and your cough is managable then again your PFT is only a number!!! My doctor doesn't rely heavily on PFT results and would agree about going to 10 CF centers and you would have all different results.

    Thanks for writing this Josh!!!

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    Replies
    1. Thanks John! I always do a better job on my PFTs when I focus more on my technique anyways. :-D

      Delete
  3. Josh, thanks so much for this post! I have long kept my PFT numbers private. I only started sharing them as part of my Kalydeco journey, and I still have mixed feelings about doing so. As someone whose lung function has always been high, I feel two things--

    1. That I don't want anyone to feel down about their number in comparison to mine, and
    2. That I don't want people to judge my life based on my PFT score. Yes, it's high, but honestly, the way my body deals with CF may be different than the way somebody else's body deals with CF. I have a boatload of other health issues brought about by CF, and because of that, my day-to-day activities are very limited, often more so than people with much lower lung function. I know people whose numbers are nearly half of mine, but who still manage to have a more "normal" life. And that's okay - but I think it just proves how little that number can mean in the overall scheme of things. It makes me very frustrated when people (including doctors!) assume that my health is "normal", stable, and uncomplicated - when really, it's far from it!

    ReplyDelete
    Replies
    1. So true! The more I connect with people the more I see how different we all are and how we need to support each other. I think you're doing a wonderful thing sharing your experience with Kayldeco. It'll be so helpful to people who are curious.

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  4. Oh my sweet son! Well said. You have had wisdom since you were a little boy. And trust me, Joshy, YOU have NEVER broken your sister's heart. Angela had moments of sadness because she was learning to accept the brutal reality of HER life with cystic fibrosis. She loved seeing someone she loved dearly -you- not have the breathing issues as early as she. You were loving and thoughtful well beyond your years. And I am thankful that you have wonderful memories of calling each other names and "fighting" as all siblings do. She had a beautiful life in many ways, all as in God's plan. I love you forever.
    Love, Mom xoxox

    ReplyDelete
  5. I totally agree that it is just a number. I have quite a few, or I should say we have quite a few CF friends with numbers in the 80% and above but who seem to be able to do less then me with numbers half of that.

    I also get annoyed when I see parents posting "omg my daughter/son's FEV1 was only 107% this appointment". I know they mean nothing by it but I never ever saw numbers that high and it makes me angry.

    ReplyDelete
    Replies
    1. I hear ya, Amy. I will say that when people share their triumphs with PFTS, I don't think they do it maliciously. I think they do it because, like everyone else, they work their butt off and they're really proud of the effort, so we should allow them to be happy. We should be proud of them and celebrate with them.

      I just wish they would put it in a different way, perhaps saying "MyPFT/my child's PFT went up by 20%." Then we say: "Wow, How awesome! How'd you do it?!"

      Sending you hugs, cyber buddy!

      Delete
  6. I agree with almost everything you said, J-Mizzle. With that said, I still don't think sharing numbers or asking someone their FEV1 should be a no-no. There is a lot of truth in being able to do things at 75% that you can't do at say, 35%. There's also truth in that it's harder to go from say 40% to 50% than it is 80% to 90%. If someone comes to me with an exercise question, knowing their lung function is pretty important.

    Here's why I'm specific and say my numbers. I'll use myself as an example, if I said my PFTs went up since I recommitted my life to exercise and treatments, but didn't give my number, I feel that it doesn't make as much of an impact. "Many people couple think, great, they went from 85% to 90%. Doesn't sound worth it." or "You were much healthier than me I'm sure". For me, that doesn't tell my story.

    My story is - Well, I started at 50% and achieved that number after 52 days in the hospital and coming in with an FEV1 in the 20's. Then, after two years of working my butt off, never missing a workout session and doing 3 to 4 treatment sets a day, every day, I got to a 75%, a number that I hadn't seen since 2003. (Yay, run-on sentence!)

    Point is, sometimes numbers provide context. And sometimes, context is important.

    I'll end at this - I'm also a little sensitive to this topic, as it relates to publicly sharing personal stuff, when a fellow community member asked me to stop posting pictures of my family and house because not everyone in the CF community can be happy and have a family. I thought then, where does that end? Should people not post pictures of green eyes because someone in the community may want them but can't have them?

    All that to say...I appreciate and respect where you are coming from and your perspective has certainly been formed through a very valid and real situation. I think it's great that you don't share your numbers and I don't think you should at all feel compelled to. Thank you for writing this.

    And yes, it is only a number!

    ReplyDelete
    Replies
    1. Ahhh Mr. Sharpe....I figured you'd chime in on this one. :-)

      As I said at the very beginning of the post, if people want to share their numbers, then that's fine. I know that it helps some people and motivates them to a healthier lifestyle.

      Personally, I'd rather hear someone say "I was able to increase my PFTs by 20% by doing X,Y and Z." because I'd want to know how they did it. This is especially important to me since there are so many different environmental, physical and genetic factors that contribute to how CF manifests in our bodies. Bottom line is, one person's FVC and FEV1 is irrelevant to another.

      More importantly, my sister represents a lot of people in the CF population who work really hard to take care of themselves and still struggle to breathe. They spend more time in the hospital despite busting their butts. Your numbers would mean nothing in the context of Angie's situation because CF is different for everyone.

      Much respect to you, Ronnie.

      Delete
    2. Totally agree with you. One person's lung function is totally irrelevant to another just as one person's CF is as well. It's funny, I agree with you on everything, we just have different opinions. It's weird how that works :)

      And I understand that my numbers would mean nothing in context of Angie's situation, but they could mean something to 1000 other people.

      Here's what I've learned - No matter what I say or how I say it, people are going to agree/disagree and love/hate me. The only I promise to anyone who listens to a word I have to say is honesty, and to stay true to who I am.

      It's also important to point out that the knife cuts both ways. Their are those in our community who don't share their improved or high numbers, or hardly anything else for that matter, for fear of being judged or slighted by those who view themselves as "less fortunate".

      To me, that's just as big of a travesty. No one should ever feel guilty about good health.

      Love this conversation.

      Delete
    3. I agree with you, the knife does cut both ways. Which is why I wrote this in the blog post and why I written similar thing in other blog posts:

      "No one should have to feel the guilt of where their numbers are at. I don't care if your numbers are off-the-charts fantastic or they're at transplant level, they shouldn't cause sadness. Especially if you're working your butt off to stay healthy."

      No one should feel guilty for being healthy, but I believe it's important to acknowledge and show empathy to those who might not be. It's a sign that we're lucky to be in the positions we're in. Also...I don't think those people view themselves as "less fortunate". I think most have had a very rough run and are doing the best they can to manage it.

      If what we say helps people, then that's a good thing. We're both all about reaching people and helping them do the best they can with what they've got. We've just got different ways of doing it.

      Delete
    4. People often use that word "lucky" and it's something that drives me bonkers as well. Are some people who are "the healthiest among us" lucky, or are they working their butt off? Well, as you know of course, both. But their are far more who are working their butt off and doing what they have to do each and every day to stay healthy, then are doing nothing and staying that way. And yes, I think there are plenty who have had a rough run of it and doing the best they can to manage. There are those who can do everything right and still be sick. However, you ask any CF doctor, or refer to any study that tracks adherence rates, the picture is clear - the majority of CF patients fall into the meaty part of the bell curve in which what we do (or don't do) will positively or negatively impact our health.

      My passion comes from getting to people before they bail on treatments or make stupid life decisions. The fact of the matter is, many people "get it" when it's too late. I yearn for people to "get it" before they're staring at a low lung function or a recurring infection with no end in sight. You can in fact work your butt off when it's too late and not have any positive results. They're not impossible, but certainly much harder to achieve.

      I simply want the younger generation to make better choices than I did. Just like you :)

      I'm thankful that you're such a visible part of this community and I appreciate everything you write.

      Delete
  7. And that's where you and I are different (which is okay).

    Studies are awesome and I'm all about the research and science aspect of CF. If it wasn't for those things, we'd be dead.That being said...

    For every doctor's opinion or study you give me, I can counter it with stories of real life experiences and situations as to why people with CF are non-compliant and why they struggle. These are factors that no doctor could ever reproduce in a study or write about in a paper. Many times the meaty part of the bell curve holds so much more than just the black and white cases of being lazy and not doing treatments. It's more than just statistics and numbers.

    When I have empathy for someone, that doesn't mean I cut them slack for not doing there treatments. I bust on people all the time about taking care of themselves and I have no sympathy for that. You have to love yourself and believe in yourself before anyone else will believe in you. The bottom line is we can say whatever we want to people in the CF Community, but they're the ones who can do the work to help themselves. We can't do it for them...we can only show them a path.

    My empathy comes from the things that have happened to me. The losses, the struggles, the pain have made me understand that this disease is not as black and white as people make it out to be. I can't ever be in someone else's shoes with CF, but they want my help and they need to let that our I'm here to listen. I'm here to support and do whatever I can to ease their struggles.

    I call myself lucky because I am. Lucky to have the genetic mutation that I do. Things could've been much harder on me. Angie wasn't so lucky when it came to her health and her genetic mutation. I'm lucky to have the support system that I do. Many people in our situation don't have anyone to turn to. I'm lucky to have life I do. I love my wife and my family. People think we're entitled to things like that, but that's not the case. Yes, I've worked hard to get what I want in this world and I'm damn proud of that, but a lot of it wouldn't have happened without a lot of luck and a lot of love. Life is a crapshoot and we make the best with what we're given. That's what I've done. That's what luck means to me.

    And guess what? It could all be gone tomorrow. So I do my best to be humble and know that fate, God or luck (maybe a little bit of all of them) has given me experiences and a gift to connect to people and I don't want to take that for granted. I want to show them compassion, love and understanding in the midst of a terrible illness. I want to help them believe in themselves even through the hardest of times.

    I share my story and Angie's story so that people will see what a gift life is and how truly lucky we are to be on this earth and live whatever life we're meant to live no matter what stands in our way. Hard work and luck go together in my life.

    I'm very appreciative of what you do for people, Ronnie. Please don't think anything different. I respect you and your family. We just have a different path to a similar kind of success.

    I'm glad we're having this discussion.

    Peaceful Things, Ronnie.

    ReplyDelete
    Replies
    1. I think we could go back and forth all day on this, so I'll just end it here.

      I just can't help but think about the phrase "same kind of different as me" when I think of us. Two lives, two paths, two messages, one goal. Love it.

      Thanks again for all of your hard work and dedication not to only the community, but to yourself.

      Delete
  8. Hey Josh. i loved this blog post. I understand both yours and Ronnie's point of view on this. Having lost two siblings to CF myself, I think I can really grasp what you are saying. Both my brother and sister were always WAY more affected by their CF than I was. I remember as a kid feeling so sad and guilty when I heard them cough because...well for a lot of reasons. For one thing, I didn't ever cough unless I was sick with a cold. But they had these horrible coughs and had to do treatments and sleep in mist tents. All I ever had to deal with was stomach aches. Their prognosis was so bad, it created a heaviness and shame for the whole family. My parents did what they could, but with two very sick kids, and one not so sick kid that they constantly worried about, it was more than they could handle.
    I still hadn't had any serious CF related issues when my sister died...and we were only nine years apart in age. There she was in the hospital struggling to breathe, and I hadn't even needed IV's yet...and wouldn't for over another decade. There is no "fair." And when you are the healthy one watching someone you love (who shares the same mutations) struggle...it is just hard to describe.
    I think it leaves a bit of a scar. And maybe that is one of the reasons you and Ronnie see this differently. I get very uncomfortable sharing my numbers with people I coach...so I usually don't.
    I know if Kathy and Tom were still alive, they'd probably be telling everyone they met how their little sister was kicking CF's butt! But it doesn't feel right for me to do that.

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    1. Thanks for your comment, Julie. Like I said, I think the numbers are more for the doctors and patients to use as a personal reference point.

      I'm sorry that you also lost your siblings to CF, but I'm sure they would be extremely proud of you and how hard you work to take care of yourself.

      Peaceful things!

      Delete
  9. This whole sharing of numbers makes me think of how you don't talk about how much you make. If you make way more than someone else it could make the other person feel insecure, jealous, etc. Sharing PFTs could have the same effect as Josh has stated.

    However, I can see instances when it does make sense to share:
    1) When you are trying to inspire about coming back from a really crappy PFT and how you got there and percentage improvement.

    2) When counseling someone who is interested in transplant. I had discussions recently with people contemplating the process and asking FEV1 was part of the discussion. Sometimes people don't realize how sick they really are and that they should be considering transplant as they reach the 30% FEV1 range. I'm a big proponent of being proactive and getting evaluated early in case there are issues (like a cancer) that have to be resolved before listing (stepping down from my soapbox now).

    Thanks to both of you for inspiring, educating, and making having this crappy disease a whole lot more fun.

    Peace,
    Steph

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    Replies
    1. Hi Stephanie. Thanks for the comment.

      As I said before, because CF is an individual disease, I don't think that our individual PFTs are relevant when it comes to motivating people. I could care less what anyone else's PFTs are because that's their journey based on how CF presents and manifests in someone's body. I could never tell my sister that if she just exercised every day her PFTs would improve as much as mine did because she was incredibly sick her whole life. I learned very early on that it's not about the numbers, it's about sharing the way you improved.

      I'm not an expert by any means on transplant, but I do believe in finding a doctor that will work with you and be honest in their assessment of when a transplant is a necessary consideration...which would include the status of your lung functions. If you don't have open, back and forth communication with your docs, then chances are things like transplant and other issues could be pushed aside longer than we want them to be. That's not a knock on the docs or patients, it's simply something I've observed over my lifetime.

      Oh, and thank you for the kind words. We all do what we can to be positive in the face of CF.

      Thanks again, PinkPigg!

      Delete
  10. Hi Josh-
    Thanks for writing about this topic...it certainly brought to light a sensitive issue. I myself, as I can imagine other CFers too, at some point in their lives suffered from a bit of "cf envy," if one can call it that. When I was old enough to realize that not every CF patient spent weeks on end in the hospital, and some even maintained lung functions of 80% at age 30, I wondered how they could possibly have the same disease I had; and how they could even call it Cystic Fibrosis! Sure, we were doing the same therapies, but the manifestations of the illness were so drastically different. It seemed so unfair. Sadly, in my own family, I witnessed the lethal insidiousness of CF. My sweet cousin who had never been admitted to the hospital for a lung infection, and who was the picture of health, died of complications from a liver transplant at age 24. Years before, my aunt succumbed to CF in her late 30s, after having been healthy enough to give birth to two beautiful children.

    So, whatever our condition--all Cf patients are ready for a cure!

    -Chris

    Ps. You write beautifully. I was so moved by this post I went on to read your entire blog. Thanks for all the work you do for CF.

    ReplyDelete
  11. Ok, so my question is, what did you do that you saw a decline in pfts and what did you do for improvement. I ask as a momma. I can't seem to find a rhyme or reason for K's decline. He is compliant and physical :(

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  12. This is an AMAZING post. One of the best I've ever read. I think the PFT number sharing that shocks me the most is when I notice some competing to have the lowest because it gains them the most sympathy and the most attention. In any case, once again, you've been a total inspiration and turned a negative into a positive. We're all blessed to have you on our side.

    ReplyDelete

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