What if Everyone Did a Little Something to Raise PH Awareness?

Earlier this week I wrote a blog post about an upcoming webinar focused on providing tips to help you share your PH story with reporters. On Tuesday, August 30, one of PH’s star media advocates, Kimberlee Ford, will host Increase PH Awareness and (Generation) Hope in the Media. During the webinar, Kimberlee will talk about her experience working with reporters and the tips she’s learned along the way. In this blog post, she explains why she works with the media to raise PH awareness and why she thinks you should too!

If would be great if everyone could do something to help raise pulmonary hypertension awareness. A good way to start is to speak with the media and share your PH story. I know it can be scary at times to share details about your medical history. It was for me, but I did it. If you do not do it, who will?

Your story might help another person get involved or better yet, get them to seek much needed medical attention. The goal of patients speaking to the media is to educate the world about this rare, incurable and life threatening disease. We always say that people do not think we are sick because PH is an invisible disease. This is our chance to share our voice and show others what PH looks like. The support of everyone in the PH community is needed to make pulmonary hypertension well known like other incurable diseases.

One day we will have a medical cure if we continue to spread awareness and raise funds for a cure. The media is the key to help get the word out about pulmonary hypertension and if we continue to educate more people about the disease there will be more people willing to donate for research.

I'm always looking to share with and get new ideas from the PH community, so join me on PHA’s upcoming webinar for tips for Generation Hopers on sharing your PH story with reporters!

Increase PH Awareness and (Generation) Hope in the Media!
Webinar (Web Log-in and Phone Dial-in Required)
Tuesday, Aug. 30, 3:30 p.m. ET/12:30 PT

Live a Little Louder: Captivate Reporters with Your PH Story!

We all know those people who walk into a room and get noticed. Ok, maybe it's their spiked purple mohawks, or maybe it's their confidence. Their eye contact. Their refusal to believe for a second that people will react to their presence with anything but awe. Whatever the reason, those Life-of-the-Party-Lisas have the courage to raise their voices and tell their stories so the world is willing to listen. And with just a little education about what it takes to raise awareness (you'll be surprised at how easy it is -- no mohawks or megaphones required!), even the shyest Generation Hoper can find that courage too.

Next Tuesday, August 30, PH awareness all-star, Kim Ford, will be leading a webinar to teach other young adults with pulmonary hypertension how to make themselves heard by the media to raise awareness for pulmonary hypertension. With step-by-step instructions and tips and tricks from Kim, you won't want to stay a wall flower for long.

Increase PH Awareness and (Generation) Hope in the Media!

Webinar (Web Log-in and Phone Dial-in Required)

Tuesday, Aug. 30, 3:30 p.m. ET/12:30 PT

Register now, and then tell us -- have you ever shared your PH story? If not, what would it take for you to contact your local newspaper or television station to tell them about pulmonary hypertension? A flask of magic courage potion? A teleprompter? Maybe a James Franco look-alike on the other side of the microphone?

Want to Change the World? Step 1: Identify Your Manatee

The first step to making the world a better place is choosing your cause. This is a big part of what keeps young people ticking -- figuring out how they want to channel their hopes, dreams, talents and passions to make a difference. For some people, it takes years to stumble upon their cause, be it ending global poverty or saving the ever-adorable manatee. For some of us, the issue we care about is in high definition long before we know what we want to do about it. We'll give you a hint...our cause is the one closest to our hearts.

That's right. We're talking about pulmonary hypertension,* the complex and often misunderstood lung condition that inspired the birth of Generation Hope in 2009. Generation Hope was established by a group of young people living with this disease who wanted a place to connect with other patients who were looking forward to living active and meaningful lives with PH.

In the past two years, Generation Hope has shown the world loud and clear that young adults are committed to fighting back against the disease that unites them. From Kim Ford, who organized a nation-wide day for PH awareness on July 8, to Ryan Juntti and Nicole Cooper, who joined other patients in tracking down the producers to the Dr. Oz Show to convince them to do a show about PH, young adults are willing to live, breathe, and tweet PH to tell the world why pulmonary hypertension matters.

So what do you say? Is pulmonary hypertension awareness YOUR manatee? If you're looking to channel your energy and passion passion to spread the word about PH, to your community, to the media, or to your elected representatives, we invite you to join us. A  new group is forming within Generation Hope for PH activists in their 20s and 30s. The group will learn about legislative issues that affect PH patients and caregivers, and work together to find creative ways to take action and make a difference in the fight against PH.

We’ll be hosting a kick-off call next week for anyone interested in getting involved. Email Outreach@PHAssociation.org to learn more!

*We know, we know. What else is new?

The Patient and Doctor Relationship in Pulmonary Hypertension Care

I believe that the patient and doctor relationship is an important thing to consider when treating pulmonary hypertension. When a patient and doctor communicate well the patient receives better care.

I am pleased to say that in 18 years of having this disease, the relationship between myself and my PH doctor has been great. I was diagnosed in 1993. The person that initially diagnosed me was a pediatric cardiologist in Miami, Fl. This cardiologist then referred me to a pulmonary hypertension specialist in New York. I was under the care of that specialist for 13 years until she retired. Then I switched to another specialist who practices at Duke Medical Center in North Carolina. My doctor from North Carolina has been my pulmonary hypertension doctor now for 5 years. I have been blessed to be under the care of only two doctors over the course of having this disease. Both doctors have taken excellent care of me and have played a large role in the success of controlling my disease.

The first step in having a patient and doctor relationship that will ensure you are receiving the best medical care is to verify that you are seeing a doctor who is knowledgeable about PH. In general, this doctor is either a pulmonologist or a cardiologist. Here are some questions, from www.PHAssociation.org, that you should be asking the doctor who is primarily responsible for treating your pulmonary hypertension:

1. Are you part of a dedicated PH clinic that includes other PH-treating doctors?
2. Do you have at least one nurse who works with patients on PH-specific medications?
3. How many PH patients do you currently treat?
4. What PH therapies do you prescribe, and how many patients are on IV prostacyclin? (While you may ultimately be placed on a different therapy, a center’s familiarity with treating patients on the most complex PH therapy is a good reflection of their level of PH expertise.)
5. Does your center perform right heart catheterization with vasodilator testing, and who does the catheterizations?
6. Do you conduct clinical trials on PH medications?

The next step in ensuring that you have a relationship with a doctor that will improve your medical care is managing your doctor visits. The time during a doctor’s appointment should include the doctor talking and you listening and you talking and the doctor listening. Go to the visit prepared with a list of side effects and symptoms that you have been experiencing. Also, if you have any questions write them down ahead of time and do not leave the appointment until those questions are answered best as possible. Personally, I like to have a way to directly contact my doctor not just during a visit, but also from home. That way I can ask them questions or notify them of problems when they arise.

Thirdly, patients have a responsibility to keep their doctors informed. If you are admitted to a hospital, make sure they know about it. If you are having difficulty getting prescriptions filled, make sure they know about it. If you are experiencing stressful events in your life, make sure they know about it. Stress can largely affect your PH. If you’re using other therapies (such as vitamins, chiropractor, acupuncture, etc.), make sure they know about it. Doctors have hundreds of patients to care for, so it is in your best interest to take primary responsibility and communicate well.

I have had the privilege of watching the medical field learn more about this disease as time progresses. Several clinical trials are underway and many have been completed with findings that help us understand how to better treat patients. I am thankful that the number of well-educated PH doctors is bountiful. I strongly believe that I will see a cure within my lifetime. Make sure that your primary PH doctor is one of these doctors. Having a good relationship with this doctor can lead to you having more good days and feeling better overall.

Hold fast, a cure is on the way!

Well, If Laughter Is the Best Medicine...

PH sucks, and we all know this. But if we have to have it, we may as well find the humor in it. Maybe my slightly twisted sense of humor got an extra boost through all this, or maybe it’s because I delight in the ironic, but I usually find something funny at my hospital visits. Here are a few stories…

The very first time I found PH to be hugely ironic was during the diagnostic process. Right after a definitive diagnosis, they subject you to a whole bunch more tests to try to determine why you drew the short PH straw in the first place. One of the tests is the VQ lung scan, where they look for little clots that might be causing the issues.

What everyone failed to tell me until minutes before the test was that the dye they inject into you in order to view these itty-bitty places in your lungs is radioactive. Which means YOU are radioactive for several hours after the test. Which means you just might get pulled over for suspected terrorist activity if you are driving home and the cops happen to have their radiation scanners running.

Really? You’re going to inject me with dye, shove me into a tube (being “driven” by a tech in training I might add) and then let me go home while running the risk of getting pulled over for being radioactive?? What else you got?!? (Side note: I was not pulled over, but I kind of wish I had been. It would have been fun to explain.)

Then there was the time I went in for a cardiac MRI and my appointment was bumped for the convict already in the tube, because earlier he was running late getting there from jail. Uh-huh, he can go first, I’ll wait.

Both cardiac MRI’s have had music pumping into the machine to distract me from the tube inches from my face, that I can not escape. Both times some song has come on about not getting enough air or watching every breath you take. Okay, that second song is just creepy and stalker-ish anyway, and 10 points to anyone who names that tune.

Then there are the medical professionals I come into contact with. There was the tech in my second right heart catheter that bore a remarkable resemblance to Harry Connick Jr. That wouldn’t have been so bad if I hadn’t been strapped to the table and stripped of my dignity due to the, er, preliminary procedures for a RHC through the groin.

I have started to threaten to collect a fee from every hospital personnel who strolls by my gurney while I wait in the hall for my turn in the cath lab, stops, back tracks, and exclaims, “OH, you’re too young to be here!” Seriously, I’m going to start charging, and then I will single-handedly pay for you all to attend Conference in June of 2012 because I will have collected that much money.

I delight in schooling marginally informed professionals about PH, particularly when they dare say, “Oh, PH, sure I know all about that. So, they treat you with oxygen, right? And then, what, give you steroids or something?”

There are many benefits to being well informed about your disease. But rattling off a bunch of information to a respiratory therapist who shot you a dirty look when you tried to explain what PH is, and then stated the above quote, is priceless.

Please don’t get me wrong, this isn’t about bashing those whose care I have entrusted myself with. Because I am incredibly blessed to be in the hands of people whom I consider to be the best of the best in medical care, and certainly the best for me. I’ve said this many times, but I’ll say it again, the doctors that care for us in the PH population are hands down the most brilliant and compassionate people I know, and I am grateful for them every day.

What all of this is actually about is finding the lighter moments in the times when I really want to cry. See, in the face of something as sobering as PH, you have to find the humor. It’s a defense mechanism for me, pure and simple. I also figure if I have to be put in all these compromising situations, when I’d rather be doing just about anything else, I have the right to get just a little sassy, at least in my own mind, and maybe out loud if really necessary.

Staying Active with PH

With summer just around the corner I am so badly itching to be outside again. Summer also brings an itch to be more active. Once the frost thaws and the sun is scorching the black top I know I will want to be riding my bike, taking my dog for longer walks, chilling in an inner tube on the lake, walking around town with friends, and hiking through new parks. PH has severely restricted my activity level over the years though.

I have this passion for the outdoors that helped define who I was. I grew up outside playing in the mud, swimming every day in summer, snowboarding and ice skating in winter and hiking through the beautiful colors in fall. Before I was diagnosed I remember things getting harder. I couldn’t ride my bike as fast as my sister anymore. I was no longer the ghosts in the graveyard champion of the neighborhood. After I was diagnosed, things got really bad. I could hardly toss a ball around with my sister without getting severe palpitations. I was also adjusting to the responsibilities and difficulties associated with having an IV medication. I didn’t want to go outside anymore; all I wanted to do was sleep and lay in bed.

But then something happened; my medications began to help. I was able to start walking around with my friends again. I could ride my bike, just at a slower pace. As I did more and pushed myself to get out of my depressed lump on the couch, my whole attitude changed.

I think trying to stay active is a big part of feeling good. Over the 10 years of having PH there have been a lot of ups and downs with how much activity I can handle. Now some days I am so tired and short of breath that getting out of bed is even hard. I tell myself that I’m going to do something like write in my journal or catch up on some of my favorite T.V. shows on these days. You can totally allow yourself the bad days. On the days you feel better though; sometimes you need a little push to get going.

The most important thing is to know your limits. This is best discovered through experience. It is extremely important to listen to your body because how you are feeling is the real judge to how much activity you can handle. There are days, however, where I hardly have symptoms from PH but I am feeling down on myself or maybe experiencing some nasty side effects from all the meds. I find that if I push myself on these days to get out of bed and make myself a big home cooked breakfast I will be feeling better and more motivated to get out of the house and be more active.

Everyone with PH knows that those precious days where we aren’t very symptomatic should not go to waste! So what else can you do to be active? Perhaps try some light exercise. Maybe take a yoga class. This could also be extremely beneficial to relieve stress. I took a tai chi class for 2 years and I must say it was incredibly stress relieving and it really helped me center my breathing and become even more aware of my body.

You could try doing something a little less physical like baking or cooking. There is always the option of trying some gardening or maybe taking your dog for a slow short walk. You could walk around at the beach only going waist deep into the water instead of swimming, or perhaps play in the sand with your kids or nieces and nephews. Even just getting out of your house and having dinner with your friends would be much better than staying at home depressed. Do what you can, and have fun doing it!

There is also the option of Pulmonary Rehab. This is for people who are still symptomatic even with treatment. This program aims to make you feel less symptomatic for a better quality of life and can help you tone your muscles and strengthen your breathing. If this is something you think you could benefit from definitely consider asking your PH specialist about it.

I think staying active with PH can really boost your spirits and help you feel better. Just take it slow, know your body, and don’t feel bad if you can’t do what you used to. It’s important to accept where you are now and be happy with that, even if it means just relaxing for a day. Does anyone else have ideas for staying active with PH? I hope you all have a fun, active and healthy summer!

Strength in a Song

Today's post is from GH Blogger JennRN, who asked us to post on her behalf since her computer's on the fritz. Enjoy!

About a month ago, one of the other girls on the Generation Hope website, Keri, posted a song by Kerrie Roberts called No Matter What. This is a very good song; Keri felt it must have been written for her. I then searched iTunes and found some more Kerrie Roberts songs. I found one that seemed to be written for me, called Keep Breathing. The words are so powerful. I like most of the songs that I have found by her, but this one in particular is so inspirational to me. Watch it here:


 

The lyrics of the song start out talking about how your life isn't what you think it should be. It then goes on to talk about not giving up or giving in, how we are not done yet. When I listen to this song, I feel like she is singing just to me. When I'm having a bad day I’ll listen to it over and over to boost myself back up.  Sometimes I cry and sometimes I smile when I hear it.   

So many PH patients are like me. We are working one day, then the next it all comes crashing down, barely giving us time to digest or understand what has just happened. It can be so devastating, no matter what degree of PH a person has. This song gives me that little nudge to say, “Okay, I feel yucky, but yes I can walk on the treadmill today, or do the grocery shopping.” These are just some of the little things that lots of people without PH do on a regular basis without having to worry about finding energy to do them. 

There are things that we PH people can do to make us continue to feel worthy and less like we are a burden to our families. I went from working part-time to not at all. I felt so much like a burden to my family. The part-time income I used to get would have really helped to pay for bills, meds, etc.  That was super hard, and I loved being a nurse. It's what I've wanted to do since I can remember. Also, I didn't think I was one of those ladies that was wired to be a stay-at-home mom. Now I have become so grateful, even on the hard days, to be able to spend all this time with my daughter and my wonderful husband. I hope that everyone in our situation has the same support that I have, even if it is not a husband. I would be lost without him. 

Sadly, with PH we never really know how long we have left here on the earth. So like Kerrie sings in this song, we have to "hang on a little tighter, a little longer, we are not done yet." Most of us have families to live for, children to raise, cures to pursue for PH and other illnesses. So we will keep fighting, raising awareness and money for research, and we will be in studies. All so that maybe someone in the future will not have to go through all this, especially our children. We will go to pulmonary rehab and walk on treadmills, and take medicines that make us feel, at times, worse than the PH itself, because we want to "Keep breathing, believing , we are not done yet."

-JennRN