Chasing Dreams, Part Two: This is Where it all Comes Together

In my last post I talked about a whirlwind trip to DC, but the weekend wasn't done yet. Now it was time for the Generation Hope Meet and Greet in NYC.

Joshua and I rented a car and grabbed PHA Staffer Debbie and her sister, fellow patient, Alex. After a great dinner (and fro-yo!) in Silver Spring we were off to NYC... starting at 9pm.

We drove through the night, laughing harder than I have in a really long time, tears streaming down our faces kind of laughing, and arrived in Newark NJ in the middle of the night, tumbling into bed close to 3am.

Then it was up and at 'em again the next morning. I could not have started my morning more perfectly... a knock on my door, and there stood Braden, a fellow patient who had come in to meet up with us. Braden is special to me. A little while back she had contacted me out of the blue because of this blog. She found it in the hospital while being diagnosed. She said it gave her hope. The fact that she reached out to let me know that made this blog all worth it. I started it to make a difference. To educate people, to tell my story, to let them know the crazy ups and downs, and maybe share a laugh about some of it (because if I don't laugh at the absurdity of this crazy disease, and the situations I have come into because of it, I just might loose it). It was incredibly gratifying to know it did make a difference for even one person. In fact, that communication has kept me writing.

 Braden rocks. I mean, I knew I liked her online persona before, but in person it was abundantly clear in about 20 seconds, she and I were going to be fast friends.

Stumbling our way through the Newark to NYC transportation system, we met up with the rest of the Generation Hope crew who had come into the city. All told, 11 patients and three caregivers that day. So cool to see people's eyes light up and to hear the squeals as connections were made with online friends now standing there in person.

Meeting for the first time

 We started at Ellen's Stardust Diner near Times Square with, what else, singing wait staff! From there it was a wander through an outdoor market and into Times Square, ending at a coffee shop on a corner.

Happy Birthday Song!

Here We Are!

 A little later on, it was down to just me, Joshua, Braden, and my very dear friend Wendy (Wendy and I met online three years ago - the first mom/PH patient I was able to connect with, and we've stayed fast friends ever since, even visiting a few times a year. It's been amazing.)

We all talked together quite a bit, and then after a while the conversation sort of broke off. Joshua and I were chatting, and Wendy and Braden began to exchange stories... finding they had so much in common. I could hear the excitement in their voices. I could hear the connections being made. After watching everyone together all day, and especially then, in that moment, it hit me. This is what we started Generation Hope for. This is what it was all about. I watched them hug their goodbyes... and I completely choked up. All of this. These past four years, from feeling so isolated and lonely and frightened out of my mind, to tentatively reaching out, to having crazy cool opportunities to reach out, to seeing all this come together... this... this is what I was meant to be here for. This is why we did what we did with Generation Hope. I honestly don't think I will ever ever forget that day, and especially that moment.

Wendy, Braden, Me, Joshua

We ended our night with seeing RENT! off Broadway... a blog post for another time as that is a show that has had very profound meaning to me since diagnosis.

Can't wait for Conference in Orlando in just over a month!

Chasing Dreams, Part One: Washington, DC

So... the weekend. Everyone is asking me about my weekend. And I've been trying to articulate it, but I can't seem to do it justice. Doesn't mean I won't try though... this blog needs an update anyway.

I have just returned from a marathon four days on the road chasing dreams and seeing some come to fruition. It's a long story, so for today let's just start with Thursday and Friday. Here's what happened...

I got up at 5am on Thursday morning and headed to the train station - bound for Washington, DC. My goal was to visit Capitol Hill and lobby for the Tom Lantos Research and Education Act of 2011.

Take a minute (and two seconds) to view this video and see why it was so important for me to do this... (direct link: http://www.youtube.com/watch?v=sBQkl8bTaAA)

So, I arrived in DC mid-afternoon and hopped a commuter rail to Silver Spring, MD to head to the Pulmonary Hypertension Association where I had a lot of fun seeing staff and holding a few planning meetings for the upcoming 10th Annual International PH Conference. Dinner with one wonderful staffer capped off the evening. If you haven't had a chance to meet some of the PHA staff, you really should. Quite simply, some of the most wonderful people I know.

Friday it was off to Capitol Hill. I met up with the lobbyist, Dane, who is working with PHA and we were headed to the office buildings of the House and Senate.

Outside Senator Blumenthal's Office

It was an interesting experience. We had appointments with two out of three of my representatives. Well, representatives for my representatives. They send their health guys to meet with constituents.

I told my story and Dane covered the legalities of what the bill entails. Everyone was very receptive and nice, but there is much follow-up to do. It's so incredibly easy to contact your representatives and ask them to co-sign this bill. Without co-signers, we don't have a bill. With enough co-signers we are practically guaranteed this bill. Please join us! Simply visit this link and use the directions and even a letter PHA has provided: HERE

We were there on official business and so it was very cool to see the underground transportation systems between the House and the Senate. My only gripe is that security took away my snacks! Apparently, you can't bring food or drink into the Congress building... nuts, seeds, and dried fruit are dangerous stuff (well, the nuts I guess can be, but really??). Oh well... it just made for one very hungry afternoon as there was still much to do that day!

Leaving Capitol Hill shortly before noon, it was back to Silver Spring via the train for probably one of the coolest experience of my life. Fellow PH patient, my good friend Joshua, was waiting for me. Joshua and is one of my closest PH friends and he is one of the people who gets me through. You need that when you're going through this.  It helps that we share a lot of other things in common (our obsession with research on PH, and more simple things... like fabulous food, and mutual childhood crushes on Donny Osmond!) And as I was to find out, we get along in person pretty well too. Actually, we squabble a bit, and he throws little pieces of paper at me and teases me relentlessly... it's kind of like having a brother around. He cracks me up, and I have immense respect for the way he has faced this disease.

 Anyway, we were to go visit United Therapeutics (UT), whose office buildings for their company Lung, LLC just happen to be just around the corner from PHA.

If you're not familiar with United Therapeutics, I suggest you become so. They are an amazing company. They make Remodulin in all its forms, as well as Adcirica, and these two drugs keep a lot of PH patients alive, myself and Joshua included. The company was founded by a woman named Martine Rothblatt. Her daughter has PH and in the early 1990s there were very limited treatments for the disease, and certainly not enough of them. United Therapeutics exists to meet the needs of rare lung diseases, and the research and medications they've come up with since have improved and saved so many lives. I love the history of the company - a mother changing the world for her daughter's condition, and helping so many others along the way.

So, we had this tour scheduled and we really didn't know what to expect.... maybe a walk through some cubicles and a meet and greet with a few staff or something? Oh no. Not at all.

What can I say... they rolled out the red carpet for us. We were met by Clare Miller, the Sales Training and Development Manager, and she introduced us to Patrick. Patrick is a Senior Vice President of Manufacturing with United Therapeutics. 

We got a behind the scenes tour on how Remodulin is made. From this white powder to IV, Sub-Q, or inhaled form (with pill forms and an implantable pump in the works!), this one little medication changed my life. "Little" is a ridiculous understatement, actually. The production, and the impact, is hardly "little". Revolutionary is more like it.

The production process is extremely complex, and the sterile environment it has to be produced in was amazing to see. We couldn't actually go in to any of the production rooms of course, but many had windows where we could peek in behind the scenes.

When you see what goes into this massive production for a drug that really serves a relatively small population, you begin to glimpse why it is so expensive to get and so highly regulated.

From the production tour we headed over to the new buildings - crazy cool place! They take such good care of their staff (light therapy rooms, Japanese tea room, hammocks, and all!). We sat down with Larry Sommerville, Senior VP of Sales and Marketing, and were also pleasantly surprised to be joined by Trish Dixon, Associate Director of Marketing. At this point I needed a Tyvaso break and as I took the nebulizer treatment, Trish walked by and saw it... she couldn't resist popping in and we're so glad she did!

Larry had prepared a series of slides for us, telling us all about United Therapeutics and the companies they hold. Each with a goal of a better today and tomorrow for patients with rare lung diseases. And then they peppered us with questions. What was it like to be a patient? What were our experiences? What did we want them to know? What did we wish could come next or be done differently? I think it's okay to speak for Joshua here and say we both felt immensely gratified at the personal interest they took in us, and in the way they listened.

Larry, Me, Trish, Joshua

From there it was lunch at 3pm (Finally! I was really missing that trail mix!) and back to PHA for phase two of our adventure... details to come soon.

Rare Disease Day

Well, today is Rare Disease Day.  I actually hate math - but I love statistics. So here are some numbers, just for fun. And how I feel about them.

According to the Rare Disease Day website, a rare disease in the USA is one that effects less than 200,000 people in the population at any given time. It's unclear how many people in the USA are effected by Pulmonary Hypertension, and it is believed to be vastly under-diagnosed... perhaps so much so that it isn't as rare as it now seems? Whatever the case, my particular form is somewhere in the 1 to 2 in a million.

The website further goes on to say, "The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. Also the need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients."

I'd say so! It can take someone with Pulmonary Hypertension anywhere from several months to several years to get a diagnosis. By that time, the disease may be seriously advanced. Why? Well, PH symptoms like breathlessness and leg swelling mimic so many other conditions. Too many patients are told they have asthma or need to loose some weight. In fact, it wouldn't surprise me if most patients were told one of those two things at first.

I obviously also spend a whole lot of time with doctors and in hospitals. If I charged someone for every time I heard either, "You're too young to be here!" or "Oh...PH... so, what, do you like take an inhaler or steroids or something for that?", or if I collected a fee for every time someone doing a medical procedure wanted to hang a bag of fluids (and risk putting me in immediate heart faliure)...well,  I could pay my medications outright.

The misunderstanding about the disease by the general medical community is frightening.  I hate to do it, but I go into every medical situation with guns drawn. I watch every move. Ask every question. Corner every medical professional who says they know all about PH, and then asks the questions about my treatments that let me know they have no clue, and give them an ear full (okay, that part is kind of fun). It's exhausting though.

Rino Aldrighett, President of the PH Association, often quotes some stats that knock my socks off. He says,  "Of the approximately 7,000 identified rare diseases in our nation, there are about 400 approved treatments for about 200 of those diseases. In 1996, the first treatment for PH was approved by the FDA, in 2001, the second and third.  Today we have nine…with more in clinical trials.  So, this small disease, with 20,000 – 30,000 diagnosed patients in the U.S. is exceeded in treatments by only two of the 7,000 rare diseases…and all of those treatments have come in the past decade and a half."

Nine treatments. More to come. This is fantastic. But my medications cost over $200,000 a year.  I am not a cheap date! And they don't cure - they just slow down the progress.


I'd personally say we don't know how long people with PH survive. The stats say 50% at five years. Those are old though, before several of the medications we now have on the market. I'd like to think it's a little longer. But for many, some I have been close to, it has not been longer.

Hanging on to all these numbers gives me a sense of control over this whole damn roller coaster ride. What numbers can't do is calm me when I look at my son and wonder if I'll see him graduate. Or make my heart stop pounding out of my chest if I get too cocky going up the stairs with an arm full of whatever. Or make me any happier about taking medications four times a day. Or stop the tears as we say goodbye to yet another who lost their battle too soon... always wondering, is that going to be me?

Numbers can't ever make me like wearing oxygen at night. Oh, I hate that stupid tube. It gets tangled in my hair. It leaves deep grooves in my face that take hours to fade the next morning. It chokes me if I roll over too many times. If it falls out during the night I spend the next day feeling like I've been hit by a truck. Oxygen deprivation can do that to you.

 In truth, it is the most outward sign of what I have to deal with, and I really hate that too. When they first delivered that big tank (wow, four years ago!), the guy asked me to try on the tubing. I told him flat out no. I know it surprised him, but I just didn't want to. Okay, I did anyway, but I was still saying no in my head. I still instinctively tear it off if I hear my son coming in. He's seen it enough times. But there's something about it I just don't want him to have to face the truth of. Nobody but my husband has really seen it on.

Until now. I took some self portraits recently, ones I didn't intend to share. I felt like if I could face the images maybe I could start accepting this part. Or something like that. I don't know exactly. I just know I was trying to process it some more. I know this stupid tube is my big hang-up. I know it's all in my head. And I know it's good for me to wear it.

I also feel like people look at me during the day and think I'm doing so well, the whole PH thing can't be that bad, right? Wrong. It's an invisible illness. I could wake up tomorrow and start a downhill slide very quickly. It happens all the time and I've watched it. So, here, to me, this is the reality of my PH.

I will fight every day. I will stay positive almost every day. I will defy every odd and do everything they told me wasn't possible with PH. I will not stop until PH is no longer a rare disease - it is a disease of the past. And I will not stop until I can get this stupid tube out of my nose.

It's Not Really an Emergency

So I had my first trip to the Emergency Room since being diagnosed with Pulmonary Hypertension. Four years with no emergency was a pretty good run.

I woke up very late on Sunday morning, feeling pretty crappy. I kind of dragged myself through the day, using coffee (which I had greatly cut down on) to get me through, especially the part of the day that involved a five year old's birthday party in a giant ware house filled with inflatable jump houses.

I got home from the party and attempted to keep functioning. But at about 4:30 I was standing in the kitchen talking to my husband and suddenly said, "Okay, I'm going to faint. I need to lie down".

Into the bedroom I went, and as per usual when I feel "off", I popped my pulse oximeter on my finger. I expected maybe some unusually low oxygen saturations, or a fast heart beat or something.

Nope. Perfect 02 sats. And a heart rate that was dipping down to the low 50s. Normal range is 60 - 100 for a healthy adult. PHers tend to run high. I run at a solid 70 - 80 at rest. So this was strange. And it would explain the crummy feeling.

I waited it out for a bit while laying down. Feeling pretty rough. I decided to call the on-call doc at my specialist's office. He was not comforting as, "I can not tell if you have a heart blockage from here. Go to the emergency room" Great.

Then I did something I promised myself I would never do unless I had to. I have my PH Specialist's personal phone number because he called me one day from it and I thought, "HEY! That could come in handy!" and I saved it... but I never want to abuse that.

So I did call him on a Sunday night. And he too said to go to the ER. Crap. Crap. Crap.

Our local ER is a scary place. End of story. So my husband and I made the decision to go to the hospital where my specialist is based. It is a bit of a ride, but at least there we had a prayer of someone knowing what to do with a PHer.

Drink your water kids!

When we got there they asked all the right PH related questions during intake, and I remained calm and very very happy we were there and not at the local place. Pokes, prods, pee in a cup, (complete with the walk of shame with the gown open in the back while you balance a bunch of wires hanging off you and, you know, a cup of your own urine) and several hours later, we had a diagnosis: dehydration.

Really?

I came out on a Sunday night and spent four hours in the ER because I was thirsty?

Sheesh.

And here folks is the part where we take a break and I tell you all once again in no uncertain terms YOU MUST ADVOCATE FOR YOURSELF!!

With a diagnosis of dehydration they naturally wanted to hang a bag of fluids for me. You know, the wet stuff. The stuff I could drink instead. While in the ER I had touched base with my PH nurse (okay, yeah, I have her number too). And she stressed, as she always does, do not let them overload you with fluids! She's right of course, because to do so could very quickly put me into heart faliure. Bad plan.

So, I'm negotiating with the ER doc, trying to explain this to him and promising with gusto that if he discharges me I will indeed go home and hydrate up. He was totally reasonable and great about it and left the room to get the discharge going.

But while we were having the conversation this nurse is fiddling with all my wires and stuff. I'm focused on the doc. She is behind me, as is all the equipment.

They all leave and suddenly my husband says, "Um... what is dripping into you?".

While we were having a conversation about no fluids the stupid nurse WAS ATTACHING THE FLUIDS. I flipped. I stuttered. I sputtered. And then I sent my husband into the hall to go get someone to take that freaking thing off.

A different nurse came in. And she says, in all seriousness.... wait for it... "Oh. Now we've gone and wasted a bag of fluids."

I choked just a little. Then I looked her straight in the eye and said, "Well, given the alternative, it is a risk and sacrifice I am willing to take.".

She responded with, "What, you mean CHF?" (chronic heart faliure)

Yeah, lady. That's what I meant. And congratulations. You've just become a blog post.

Okay, switching gears (sorry, this is a long one)

We left with me more or less in one piece. And while dehydration could explain the low heart rate, I wasn't totally buying it. For some time now, I have been wondering about one of my meds. Digoxin is sometimes given to PH patients for heart support. It keeps a struggling heart rate low. When I was diagnosed my heart was a huge (literally, huge) mess. But all that's been better for some time now and I was kind of hoping I might come off it, if only to be down one med.

In fact, I had a scheduled appointment for Monday where I was going to bring it up. While my blood work from the ER showed I was not suffering from Digoxin toxicity (something easy to slip into, and quite dangerous), the theory goes it may still in fact be contributing to my low heart rate.

Last week I had an echo and a stress test on a bike (tube in the mouth, plugged nose, wires attached everywhere, the works). I'm rambling here. But it's all connected, I promise.

So, appointment on Monday comes. I'm surprised with no six minute walk! YAY! Because truth be told, not only are they a pain in the ass, I was still feeling pretty icky from the ER ordeal and wasn't up to it.

When meeting with my nurse she informed me that I have been doing kind of too well on my six minute walks. They're not showing much. And the exercise test I did on the bike showed way more - so maybe we should just do those for a while. Okay!! :)

What did show up on that bike test is my heart rate maybe didn't get up as high as they would expect for someone with PH exercising, and perhaps the Digoxin is in fact holding me back too much. So no more Digoxin for me.

Echo looks great, my heart maintaining it's previous improvement. And one little note that I hadn't seen before. When your right heart is enlarged it can push on the left side and sort of compress it, and this has been the case for me. Well, that compression of sorts has gone down. I'll take it as a good thing.

Again I say, YAY!

And in closing, just because it's too bizarre not to include for fun, this hot little number is what is currently hanging outside the hospital gift shop.

Now think real hard, in what scenario would this be an appropriate gift to bring someone in the hospital?

I'll leave you to ponder. I need a drink of water.

An Insatiable Sense of Carpe Diem

I have just marked my fourth anniversary of being diagnosed with Pulmonary Hypertension. It's a day of mixed emotions.

First and foremost I am deeply deeply grateful for all that has happened over the past year. It's been an amazing year. My health, at least symptom wise, has returned to what I would consider almost normal. Yes, I get the occasional palpitation and chest pain, and even a little out of breath at the odd times, but by and large my complaints are minimal. What is most annoying really is the constant struggle with myself to remember to take my medications so many times a day (Crap! Did four hours go by already? Where the heck is my nebulizer??), and the ridiculous battles I have had to wage with my specialty pharmacy.

But all in all feel like I have really and truly made it back from all of this, and that is something I am grateful for daily. And in the back of my mind I am always acutely aware of how temporary it may be.

PH remains progressive and incurable. If I remember the horrid survival charts right, I've outlived about 40% of the patients who were diagnosed the same time I was.

In the past month the PH community has said a sad goodbye to several of our leaders. People who seemed to be defying all the odds themselves, and then slipped away. It never fails to give me a jolt of reality - that this situation is tenuous at best. And while my heart is breaking and the tears fall for phriends gone too soon, the will to fight renews with even more intensity.

But today is a day for celebration. A day to look back on all that has happened and truly count the blessings. And since I have been terribly remiss in updating this blog, here are a few of the highlights...

1) Travels... everywhere: This year I have traveled to Orlando, Cleveland, Washington D.C., Omaha, and Boston for a variety of PH events. These are such incredible opportunities.  I get to talk to other patients and medical professionals about my own journey, and I hope inspire them a little bit. To fight harder. To not take "no" for an answer. To keep the fire alive for research. And as PH is always full circle, they inspire me, and I always learn something from someone who knocks me out with what they've accomplished. I get to meet new people, and meet people I have only known online. It is making my virtual community come alive. So cool.

2) Mountains (of sand) climbed: I have realized that, for better or for worse, I have developed an insatiable sense of carpe diam. I literally have to seize each and every moment, and I do, even it if is perhaps a bit of a foolhardy decision. So this summer we were visiting my adorable new nephew on the West Coast. Oregon beaches are beautiful, and the one we were at happens to have this sand dune that is about 500 feet straight up.


Of course, I got it into my head to climb it. And I did. I had to sit and rest countless times... but oh the view... so worth it. At the top, once I was left alone for a few minutes, I began to cry. I was just so overwhelmed by the combination of the beauty and being so grateful for the chance to be up there (even though it was incredibly difficult going), and very aware that it just might be a once in a lifetime opportunity for me. Wow.

3) My baby started Kindergarten: A day that I actually stood a little too much of a chance of not seeing, that seemed so far off, but came too quickly... and it was another of those bittersweet moments. He's probably it for us - an only child as pregnancy is out of the question and adoption feels a little too overwhelming at the moment. I am so so proud of him and the sweet and spirited little boy he is becoming. And wow is it nice to have (almost) enough time to get all my work done during the day. But boy is it getting quiet around here.


4) Spread the Word: Pulmonary Hypertension E-mail Groups: This was cool... I was a recipient of a Tom Lantos Innovation in Community Service Award which basically means I was given $5,000 and the go-ahead to create this idea I dreamed up a few days before the grant application deadline. The basic idea was to create a public service announcement letting people know about all the incredible e-mail based groups that the Pulmonary Hypertension Association offers for specific demographics. My own group is Generation Hope, and it has been my lifeline. I wanted to get the word out to patients that there are groups like this for everyone. The video is complete and it debuted to over 1,000 PH allied health professionals through the PHPN Conference in September. It was then mailed out to every PH support group leader in the country and is now available on YouTube. So much bigger than I ever imagined, thanks a great deal to the vision of the production company I worked with (Co:lab through Design is Love), and all the help I got from the PH community.

5) Zumbathon!: I have held off on doing a fund raiser for a long time. Asking for money or help of any kind isn't really my thing at all. But a party... now that I can do!! This past summer I wandered into Valley Ballet, drawn by their new Zumba poster offering classes. I thought... well... maybe... just maybe I'm ready. I grew up dancing. 13 years of lessons in fact, and did plenty of dancing in college and after at clubs and such. But PH of course had brought all that to a halt. There was just no way when I was having trouble getting up one flight of stairs that I was going to be be able to dance. And really, I was pretty sure all that was over. But I was feeling so good now. Maybe...

And so I tentatively bought a class card and started going to classes. I did Zumba and a class called DanceFit Mix, and while I have to concentrate a lot on my breathing and pay close attention not to overdo it, I'm doing it. And keeping up pretty well I think.
So I kind of wanted to celebrate all of that. I also knew Zumba is crazy popular around here. So how cool would it be to integrate the fitness community into some awareness and fundraising for PH? The studio had previously hosted a Zumbathon for another cause and I approached the owner who is amazing, and she said yes, she would host!

Long story short, we had about 45 participants and between their donations, a silent auction, and a grant, the first ever Zumbathon for Pulmonary Hypertension raised about $4,500! I could not be more thrilled and am so thankful to everyone who took part, whether through dancing, donating, or prep and break down. It could not have been done without you!

So... that's my year. Crazy, right? I am constantly in awe at what is happening to me. I don't feel like I go after a lot of this. Rather it falls in my lap and if I don't give 110% to make an opportunity everything it can be, and to fight for a cure, then I don't deserve to hope for one. So... I do it. And there is so much to celebrate. People to miss terribly. So much hope to have. A little fear of the future that will probably never quite go away. But everyday I think I'm learning to deal with that. Learning to ride out the incredible ups and the crushing downs. Bring on the next adventure. Oh yes, I have a few ideas. This insatiable sense of carpe diem leaves me never quite satisfied with the status quo... but it's probably best to keep those to myself until I can see if I pull them off. ;)

Ah 1, 2, 3... let's Zumba!

Next week will be my first attempt at a fundraiser.

After a few years of resisting I finally took the plunge and started an event that I hope will raise awareness and a few bucks for Pulmonary Hypertension research and support.

Zumba is a fusion of Latin dance and hip-hop and is wildly popular in health clubs everywhere. I wanted to do something that was going to be a ton of fun for family and friends to participate in, and maybe reach some people who hadn't otherwise heard of PH, or gotten involved in the cause.

I've been incredibly blessed this year to return to one of my first loves and dance again. Thank you God and modern medicine! So it was really cool to have the opportunity to sort of celebrate and integrate the whole thing and channel it for PH.

If you can't make it, we are gratefully accepting donations and 100% of all donations go directly to PHA. We were really lucky and got some grants to cover our event costs - so 100% really means 100%. :)

Check it out! http://zumbathonforph.blogspot.com/

PH and Your Kids

I left the international PH conference last year having learned a lot. But there was one topic still on my mind that I had never heard addressed, and that I desperately wanted to know more about.

When the time came, how in heaven's name was I going to explain this condition to my son?

I thought about it a lot, requested it as a topic for the conference in 2012, but didn't want to wait that long.

And then it dawned on me... I'm an educator! I know about this whole talking to kids on their level stuff, I just couldn't put my own feelings about the disease aside well enough to mesh what I knew about kids with what I knew I will some day have to do regarding PH.

So, deep breath in, deep breath out, I tackled the topic. I wrote an article for the Pulmonary Hypertension Association. I was talking to my friend Sam about it and come to find out, she spent a lot of time talking to kids about their parent's illness when she worked as an oncology nurse. So, I sent her my article and she helped me round it out into something that could be used for all ages and stages, no matter where you are at with your illness.  You can read the full version here: Helping Your Child Cope With Your Illness

I still dread the day my son asks why I'm sick. Right now he won't notice much of anything because I'm doing really well and all my medications and oxygen have been a part of his world for as long as he can remember. To him, this is all normal (ah, childhood innocence!) But, the day will come when he will start asking tough questions, and the day will also come when I have to give him some tough answers. But, now I feel just a little bit more ready.