What is the Generation Hope blog?

A blog can be many things … a diary, a rant, a means of promotion. It can be the voice that lets you know you are not alone. It can provide a chronicle of experiences that mirror your own. It can inspire...

The Generation Hope blog seeks to bring a voice to young adults facing Pulmonary Hypertension. It addresses those issues most applicable to people in their twenties, thirties and forties such as college, work, children and dating; all accompanied by a chronic illness.

Our blog is written by patients who are going through these experiences or who have gone through them in the past. They come from across the country and around the world! Each offers positive viewpoints on the realities of life with PH.

A blog should also be a conversation between its bloggers and readers and we want to open up a dialogue with the community. Check out some of our past posts:

Finding Your Voice

We Are Hope

Who would I be without illness?

As we prepare for the coming year, we would like to invite you to join our blogging team. Why not write one post (or more) in the coming year! If writing isn’t your thing, is there anything you would like to see addressed on the blog? Any issues or problems that you feel could be tackled? If so, we want to hear from you. Simply email: ChandaC@phassociation.org

As new posts arrive why not share your own experiences on what you’ve read? Doing so will ensure that other patients who read it will gain a well-rounded view on the topic. Use the comment box below to share your thoughts.

With regular new material and an engaged and active readership we can continue to inspire each other to live our lives with enthusiasm and optimism … and that’s what Generation Hope is all about.

Apply for a 2012 Lantos Award!

Colleen Brunetti, a PHA Generation Hope member and blogger, received a 2011 Lantos Award to produce this video, which explains the purpose and value of PHA’s email groups (like Generation Hope!).

Do you have your own creative idea and just need some funding to make it happen? PHA is now accepting applications for the 2012 Lantos Awards! Apply today and PHA may award you up to $5,000 to build your PH awareness project or enhance services for PH patients. Visit www.PHAssociation.org/LantosAwards for more details!

PH, Professionalism, and the Digital Age

Leading a professional development presentation.

Photo Credit: Amharc Photography

The Back Story

When I was first diagnosed with Pulmonary Hypertension I was teaching part-time in a public school. I was met with a lot of sympathy, and promises of support from the school community. Within months, however, my teaching assignment for the following year was changed to a situation where my hours were cut, my commute extended, and a student was placed on my case load who required both physical restraints for violence and chasing because he tended to bolt. By the time I was diagnosed I wasn’t even climbing a set of stairs well, so this was of course out of the question. When I tried to have my assignment adjusted so that I was actually teaching and not chasing, I was shown the door… or I quit… or I was kind of fired… whatever you call it, I was out of a job and the correlation between my diagnosis and the change in job assignment was just too convenient to ignore.

Could I have sued? Yes, probably. But I was immersed in this totally terrifying world of being a newly diagnosed Pulmonary Hypertension patient. Like so many others, I didn’t know if I was going to live more than a few years. I simply did not have the energy or internal strength to take on another fight.

Turning point

I moved on from that job and began teaching online college classes, something I still do today. A little over a year ago I also started my own company teaching sign language to kids, caregivers, and educators.

Both jobs are independent contractor based. I have to consistently earn the right to do the work based on job performance. There is no guarantee of work, and no net to catch me if it goes badly. But it is work, and work I enjoy.

Because of my experience with the public schools, I have guarded the secret of my Pulmonary Hypertension almost fiercely from anyone I have contact with on a professional level. However, in my private life I am involved literally daily in advocacy and awareness raising, to the point where my activities have become public knowledge and widely chronicled online in my blog, Facebook, newspapers, radio interviews, and through work with PHA.  In short, if you Google my name, it’s connected with PH.

This has presented a huge professional dilemma.  I have worried constantly that word would get out and I would again find myself without employment because someone jumped to some conclusion about what PH means in my life, as far as ability to meet professional expectations.

Two semesters ago, this worry started to materialize. A college student (whose social boundaries I can’t help but question) did indeed do a Google search on me. Then he wrote me about what he found in regards to PH. It’s safe to say he did not understand what he was reading, but suffice to say, I was shaken.

I talked to a lot of my friends in Generation Hope about these concerns – should I just come forward and tell my employers? Their advice was good. In short, it was better to come forward and be in charge of what information got out, and how it got out, than to be blindsided by information someone found online and misconstrued.

Still, I dragged my feet for a while. I was comfortable just doing my job and being trusted as a professional based on the merit of my work. I did not relish the idea of having these good relationships tainted by something like PH, and had little reason to trust things would go well, since they had gone so badly in the past.

But finally, I got sick of it all. I got sick of worrying and hiding and screening friend requests on Facebook from people I actually wanted to be friends with, but also had professional relationships with. PH is such a big part of my life; I didn’t want to hide it anymore.

I started with the sign language company I do some independent work for. I called my national director, took a deep breath, and told her the story. She’s a wonderful lady, and her response was warm and supportive. Since that call, I’ve been hired to do even more work for them, and a pretty big project at that, so I feel it is safe to say things are going to turn out okay there.

The college was harder. It’s a more high-pressure job, it’s most of my income, and if I lose it, my family and I are going to be in a very difficult financial situation. Finally though, I just had enough of the hiding and tiptoeing around, not to mention I had my parents (who also work for the college) under gag order not to talk about my PH, and that was difficult for them as they couldn’t do any awareness work of their own with most of their community because of it.

I sat down and wrote a long letter to my supervisors at the college. I told them my story, and why I had hid it for so long. I emphasized that I remain, as always dedicated to my students. The response again has been supportive, as has follow-up communication.

Today

I’m slowly relaxing and getting comfortable with the word being out there, trusting that when the hiring season next comes around, my evaluations and work ethic will be what they look to once again.

Conventional wisdom says you should keep your professional and personal life separate, and to a point, I agree. Certainly I’ve seen the dark side to why that is. However, in the digital age this is becoming more and more difficult. There is something to be said for being in control of the situation and managing how and what gets out about your medical condition.

There’s not much you can do about how PH is going to affect your life sometimes. But there’s a lot you can do about how you react to and handle it, and how you use those times to educate others. The professional arena is just one more place to make those considerations…and sometimes a leap of faith.

The importance of PHriendships

When you deal with the onset of a chronic illness you are
forced to confront your relationship with yourself: your expectations of your future and work/life balance. For me pulmonary hypertension revealed greater meaning in my connections with others too. I realized just how lucky I was to have great friends who stuck by me through my new set of circumstances. I also truly valued those new relationships I formed, many of which were born out of a common experience of ill health, or indeed pulmonary hypertension itself.

Like many patients, I initially struggled to comprehend my diagnosis. Friends knew I was very ill but also couldn’t quite grasp the seriousness of what it entailed. Part of this was due to the fact that we were all in our twenties. We were not equipped to deal with serious ill health at that point as, for the main part, we had not been exposed to it.

But my friends and I gained understanding as time went on. For me, a good friend was someone who understood when I was tired and who knew that I might need to change my plans at the last minute. There was Anna, who knew that though I could dance in my seat at a Madonna concert, but couldn’t walk the steep hill from the concert venue! There was Tom who flew to San Diego to be there for my PTE surgery and who gave me a place to crash whenever life at home became too much.

I also developed relationships with other people with PH. One of those was a mother (also called Sylvia) from Northern Ireland who I’ve never met in person but versed me on everything I could possibly need to know for life before and after PTE surgery. We still check in on each other using that shorthand only used by those people who have been through such similar life-altering events. At PHA’s last conference I was telling my story to others at a support group meeting when another patient jumped up and exclaimed, “Oh my God, you are Sylvia, the Irish girl!”
That was Amanda and it turned out she had her operation a week after mine and had heard encouraging tales of how well I had responded to surgery. From that point on we became firm friends and I even visited her in her hometown of St Louis this year. (see photo)

And there are so many others I’ve met online and in person, people who I would never have known were it not for our connection to PH. They are always ready to share encouraging words or offer advice.

My old friends remind me of who I was before my illness while my new friends give me inspiration for who I can be after serious ill-health. Both are equally important and I couldn’t imagine the last few years without them.

How have your friendships developed and changed since your diagnosis?

Drawing the line . . . how much to tell

Who have you told about your illness? How much do you generally tell people and when do you tell them? When young adults are faced with a disease such as pulmonary hypertension they have to negotiate these issues
whenever they deal with their employers, universities, co-workers, new friends
and even dates.

Before my PTE surgery I often got very stressed at the thought of telling people about my illness. I never quite got the hang of knowing when to tell or what to tell. I didn’t develop the thick skin necessary to combat the sometimes negative or naïve comments an explanation sometimes drew. My worst experience of dealing with an employer was when a supervisor asked what type of illness I had. I told him a lot about pulmonary hypertension and even handed him a PHA brochure. His response? “So, really, there is nothing wrong with you.”

What I didn’t understand at the time is that the key to this, just as divulging any personal issue, is drawing boundaries. It does not have to be an all or nothing scenario. I’ve learned that I can tell my boss just enough to allow for any flexibility I might need without feeling like I am crossing
the employee/employer line.

I’ve noticed that generally friends and co-workers are sometimes uncertain about how much to ask or, reversely, ask too much. So you learn to draw the line yourself. I now only reveal the information with which I feel comfortable. On the other hand, dropping some casual comments into the conversation will also let people know that it’s ok to talk about the elephant (or O2 machine) in the room.

Dating is another minefield when it comes to revealing information. You might have a stock statement you use in scenarios such as this, one that offers an explanation without being overwhelming. Even as someone who is comparatively healthy, I am still cautious about revealing my history and the effect PH had on my health in recent years. I’ve learned to go
with my own instincts. If I don’t feel I can trust someone I hold back until I get to know them better. Recently, I chose not to immediately reveal my last name to someone for fear they might google me and find my connection to PH before I was ready to tell. Instead, I slowly disclosed over time the impact the disease had, and continues to have, on my life.

For me, putting these boundaries in place, gives me a sense of control. It allows me to write my own narrative on what is, at the end of the day, my story. This is what works for me.

How do you deal with this? Where do you draw the line?

Relating to Illness on Screen

I recently saw the new movie, 50/50, in which the main character, Adam, a 20-something professional, is diagnosed with a rare form of cancer. The film deals with his health struggles and their impact on his life. Where this movie differs, in my eyes, to almost any other film dealing with illness, is that it doesn’t martyr the characters or overdramatize key moments such as diagnosis, surgery or recovery. Instead, it realistically and sensitively (for the most part!) deals with the large and minor ways serious illness affects everyday life.

Whereas many films that deal with these issues place the disease as the patient’s central focus, most pulmonary hypertension patients realize that life does not stop just because a serious condition enters our lives. Instead we still have to maintain our relationships, negotiate work or college and keep up some form of normal routine.

For me, the hospital scenes were particularly reminiscent of my own experiences. Diagnosis is not always the “time standing still” doom-laden moment typically depicted on screen. Often it is a phrase casually thrown out by a doctor and only registers with time and research on the topic. Just as Adam did, I once found myself googling the unfamiliar terms I’d encountered, terrified of what I found. Likewise, the emotion surrounding major surgery is typically overshadowed in reality by the practicalities of pre-surgery prep or, for family members, the hours of waiting for results.

One of the more prevalent clichés that I’ve seen in “disease” movies are the secondary characters who either unconditionally support their ill friend or family member, or show their true colors and flee at the challenge of handling such a serious situation.

Real life, for the main part, is a far more complex affair. Friends and family sometimes disappoint or may feel, at periods, overwhelmed. They remain human, not superhuman. 50/50 successfully depicts people who don’t necessarily transform due to a serious diagnosis but do adapt. The immaturity of Adam’s best friend, Kyle does not stop because Adam is sick but, in some of the movie’s most moving scenes, we see his willingness to support his condition.

Likewise, PH does not transform patients into saints! If we are lucky we use the disease as an opportunity to better ourselves and our lives. But, just like Adam, who fails to see the impact of his disease on his family, we can struggle, at times, to see beyond our own difficulties.

But, for me, the most relatable and refreshing aspect of the film is its willingness to allow humor into every situation, no matter how dark. Kyle teases Adam about his bald head or scar just as my brother teased me about my blue-ish nails or entertained me with stories in the cardiac ward. Just like the film, illness can be inspiring and moving, but also funny!

Are there any movies that remind you of your own struggles with PH?

Who would I be without illness?

Sylvia, smiling from her cube at PHA's office in Silver Spring, Md.

Today's post comes from the newest member of the Generation Hope Blog team, Sylvia! From Ireland, Sylvia was diagnosed with pulmonary hypertension secondary to chronic thromboembolic disease more than eight years ago. Sylvia is currently working at the Pulmonary Hypertension Association (PHA) through a program that allows young professionals to gain international experience in the United States. 

While browsing a blog on chronic illness recently I came across this question and it stopped me in my tracks. Who would I be without illness? Like many Generation Hopers, pulmonary hypertension had entered my life at a formative age, in my case my mid-twenties. Like most people I was still figuring out who I was, finding my way on the first steps toward a fulfilling career and making (and breaking) relationships. I was very much a work in progress.

Almost nine years later and I can barely recognize the person I was back then. But was it illness that changed me? Had I not become ill would I still be the “me” I am today, regardless? I can never know. But I’d like to imagine that the challenge of dealing with such a serious condition and its impact on my life accelerated my maturity. I got to where I was supposed to go; I just arrived a little earlier than planned.

Of course, the question “who would I be without illness” has many negative connotations too. Without illness I would be further along in my career, I would never have moved home with my parents while others moved on, got married, and had kids. But, for me at least, the perspective and life knowledge I’ve gained have far outweighed these problems. Here are just five of the ways that I know PH has changed me for the better:

Pulmonary hypertension revealed a strength in me I could never have imagined I possessed. It allowed me to deal with a scary prognosis, the ignorance of others to a rare disease, and gave me the courage to face a massive surgery overseas. This strength has been a gift to me and made me realize no matter what happens I have the resources within myself to deal with anything.

PH has also made me less money and career-driven. Although our society equates career with success, I’ve learned to establish an identity for myself not purely driven by work. For me now finding flexible, fulfilling work that accommodates my needs and lifestyle rather than the other way around is my priority.

PH made me much more aware of the true priorities in life, primarily my friends and my family. Going through my twenties and early thirties being seriously ill (and on more than one occasion, close to death) it was hard to identify with others my age who stressed over their promotions, broken relationships and money worries. Now, that my health has improved I’ve found somewhat of a middle ground (everyday worries affect us all!) but I still appreciate the life perspective I’ve gained. 

Pulmonary hypertension has given me permission to trust myself!  For years I worried about what everyone thought about me. Now I concentrate on what I think and am not afraid to remove myself from unhealthy situations and people.  I am now far more trusting of my instincts and only surround myself with friendships that are positive. The eventual diagnosis of my PH after years of dismissal by doctors also validated my expertise over my own health.  These days, I continue to listen to my body and if it’s asking me to rest, I rest!

Pulmonary hypertension’s interruption to my life removed the illusion that we have to follow a set plan in life. While many people feel an expectation to have their marriage, home and children in place by X date, I hope to do these things when the time is right for me. And perhaps the only advantage to knowing I can’t have children naturally is that I don’t feel the pressure of a ticking biological clock. I’m following the path that suits me. This year, for instance, I’m working abroad, something I had always wanted to do. We all have the right to draft our own individualized life plan. 

All in all, pulmonary hypertension has taught me many lessons. I may not have chosen to learn these lessons in the manner I did but I’m glad to have grown as a result. 

How has illness changed you? Do you think pulmonary hypertension has benefited your life in any way?

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

Life Changes and Insurance

Change: the one word that I would use to describe my life at this moment. I recently stopped working, moved, and went from living with my husband and daughter to living with my parents and daughter. All this has happened because my husband joined the Army. He is now away for training and will be for several months.

Along with his job change comes an insurance change. With several changes, it is crazy to think that the lead source of my anxiety is my fear of not getting proper medical care. The Army will provide us with healthcare, however with Pulmonary Hypertension there is a lot that needs to be considered. Patients have specialty medication and specialized doctors for treatment. Many times the transition of prescriptions and prolonged wait times for approvals can delay the shipment of medications.

We have taken several steps to proactively prevent a break in therapy and insurance. I believe being proactive is the best way to keep an insurance change from negatively affecting my health. Below you will find advice on steps I recommend if you are facing an upcoming insurance change:

1. Order your monthly supply of medication as close together as you can a couple months previous to the insurance change. This way you have a supply of extra medications on hand incase it takes long to get your prescriptions approved.
2. Know all information about the insurance benefits you will be acquiring. Amount deducted from paycheck, maximum lifetime benefit, co-payments, and other expenses such as these because this can help you from incurring unexpected bills.
3. Understand your current insurance’s policy on obtaining COBRA if necessary. COBRA is a federally mandated insurance program that gives some employees the opportunity to continue insurance coverage after the qualifying employer leaves employment. You are by law allowed a 60-day grace period to elect COBRA. You also have to pay per calendar month so be wise about the day you elect the insurance.
4. Find out if your current PH specialist will accept your new insurance. If they do not, it might be necessary to find a different PH specialist that accepts your new insurance.
5. Click here for more information on how to work with your insurance company. This is a great article that was recently posted on the PHA website. It could help save you many phone calls and insurance headaches.

It is a victory to be alive long enough that life changes occur. The downside is that some of these life changes lead to the hassle of dealing with insurance changes. Marriage and obtaining a new job are a few of the milestones that can help us realize how we have overcome this disease. No matter the change, from a patient’s perspective, life will always be different than it is for someone that doesn’t have a life threatening illness. At times it can be overwhelming to learn how to navigate the insurance jungle. I think the best way to cope with those frustrations is to acknowledge that this disease makes all aspects of life different and not just our physical health.

Hold fast, a cure is on the way!

C-O-U-R-A-G-E

I feel like I have been to the Wizard of Oz to receive my badge of courage. While a lot of people have trouble looking at the bright side or weathering the storms, somehow I got lucky and just seem to be strong when I need to be. Don't get me wrong, I have my moments just like anyone else with a chronic illness. I sometimes just have to be angry or cry my eyes out, then I just pick back up and go on. I was thinking the other day that the word courage can remind us of a lot of things.

C is for caring and concern. This to me can be for yourself and others. I have to be concerned about my own health and how I take care of myself to care for my family. Also, with PH and lots of other illnesses, your family, friends, doctors, etc. care for you.

O is for optimism. Without a positive outlook on life, people are never as happy as they could be. I am not saying that this is always easy. I tend to lose sight of the positive on my third or fourth trip to the bathroom thanks to the side effects of meds. I try then to find the humor in the situation, as in, "Wow, I am getting to read a lot of this book!!"

U is for the unexpected. Try to be ready for it, and thank God when he pulls you through.

R stands for ready. Be ready for the fight of your life. People with PH are sometimes sick for a long time before they are even diagnosed. Then after dealing with all the tests, they have to endure the stress of side effects of medications. All the people I have met thus far in the PH community are so up for the fight, it's amazing.

A is for answers. We all want answers in life, yet with PH there are no concrete answers as to why people get this disease, especially for the people with idiopathic PH. I was told I have this because my lupus caused it. Yet, no one can tell me why I have lupus. Also, there is no cure yet, so we have to be courageous until that day comes.

G is for -- lets be honest -- gross. The side effects we PHers have to tolerate are just that, gross! I despise a headache, and the GI symptoms (I won't even go into details about that!). I am sure that others have their own stories to tell!

E is for education and expectations. I think about all the support groups and people out there trying to spread the word about PH to patients, family members, medical professionals and the public. I think about why we're all so focused on education...because we all expect that one day it will come full circle in the form of a cure.

I find that this combination of thoughts just leads me to be hopeful; that one day no one else will have to go through all this. I worked in the medical profession and have seen so many wonderful things, that it is impossible for me to believe that this can't be over come as well. Tell me what courage means to you!!!

God Bless, JennRN

Living Breathless

So last May I was going along with life. Working part time as a registered nurse and taking care of my family. This family consists of my three year old daughter, two at the time, and my wonderful husband. Life then was breathless, because God had given me so much. I had overcome my Lupus symptoms enough to be able to be a momma, what I always dreamed. Then I realized I couldn't breathe when I did certain simple activities, like walking into work. So off to the doctor I went. The following week was a whirlwind and left me just as breathless as life itself. I was diagnosed with pulmonary hypertension on Friday of that week. Life as I had known it would never be the same.

Even with all the changes that my family and I have had to make, I can still honestly say that I have a wonderful life. I have life. I have the breath I need to keep living and to watch my baby girl grow up. I may not be here for as long as I would like, but I get to live my dream of being a momma. I can no longer work as an RN in the same unit that I was working in. I never thought that I was meant to be a stay at home mom, but I am learning with everything else that this is a blessing in itself.

Being breathless has allowed me to really see things for their beauty. I love to plant flowers, sometimes it’s really hard for me, but to see them bloom in the sunshine and to be able to enjoy this is one thing that I have learned not to take for granted. I can't rake leaves, or mow grass, but I can feed the birds and watch the squirrels. I am trying to teach my daughter to enjoy the small things like this. It is so much fun to watch her giggle at the squirrels when they chase one another in the yard.

I am thankful that I have been diagnosed in the generation where science and medicine have come so far. Twenty years ago I may not have had a very good prognosis. With all the research and medications available I will be able to live longer, even breathless.

With God's Love JennRn

Good health because of pleasant words?

It is seven in the morning. I have just returned from dropping my grandmother off at the airport. Since my husband was at home in bed, I was able to leave my one-year-old daughter sleeping in her crib. I decide to change her diaper before I crawl back into bed. The hope is that a new dry diaper will extend how long she sleeps. Every extra moment of rest is essential for us as PH patients. I lift her from her crib onto the changing table. As she lies on the changing table, she begins to babble. She is talking with her eyes completely closed. She is talking before she wakes up. She does wake up for a brief moment after I change her diaper, but settles back into her crib quietly.

I wonder if this scenario can be applied to our health in an analogy. She talked before she was awake and it was her talking that woke her up. Similarly, can we as patients talk ourselves into good health? Can our talking lead to being healthy? When I refer to “talking” I am suggesting positive self-talk. There is a proverb that states, “Pleasant words are as a honeycomb, sweet to the soul, and health to the bones.” Is the proverb correct in stating that pleasant words can have such a healthy benefit? I would apply “health to the bones” to mean good physical health in our bodies, not just in our bones.

Personally I believe this proverb to be true. Positive self-talk helps reduce stress. I know there is a link between stress and PH. Doctors have told me this and I have experienced it. If I go through a week that has several stressful events, about three days later, I will experience arrhythmias. Positive self-talk is an antidote to stress. I am in better health when I choose “pleasant words.”

There is an article on WebMD titled Stress and Heart Disease that more closely looks at this theory. The article includes information on signs of stress, ways to cope with stress, advice on how to keep a positive attitude, and ways to reduce stressors. The article also has specific advice on eating, sleeping, and relaxing that can help reduce stress. Please keep in mind when reading this article that it was written for heart disease in general and not just PH patients.

I am not suggesting that if your PH is on a decline it is your fault because you lack positive self-talk. To go back to the analogy, every time my daughter talks it does not mean that she is going to wake up. As you can imagine, she talks plenty when already awake. This post is to suggest that if you do not consciously look at the struggles of this disease with pleasant words, it would be worth a try to do so. I understand that having this disease can wear our attitudes out. You don’t even have the energy to shower much less the energy to keep positive. Like every PH patient you’re probably tired of hospital stays, bad news from doctor visits, and funny looks in public places. Hopefully though, after reading this, you can exert a little more energy for pleasant words. They are as a honeycomb, sweet to the soul, and health to the bones.

Holdfast, a cure is on the way!

On Acceptance (One Breath at a Time)

Today I was so out of breath walking to the library on my college campus in the wind and cold that once I got inside the doors, I just collapsed in the entryway and sat there on the floor panting for awhile. I watched people come and go through the doors, some giving me looks, others just passing through. I used to be embarrassed about things like this… sitting down in the middle of a store because my legs hurt from walking, or running into class late, panting so loudly I’m sure the whole room could hear.

I’m not embarrassed anymore, maybe because I’ve toughened up to the weird looks and snarky comments. Still, sometimes it gets to me a little. I’ve had people tell me my central line is gross. I’ve had guys break off relationships with me because they found out I couldn’t have kids. I’ve had friends turn away at the beginning of a friendship once they find out I could die because they don’t want to get attached. It’s like, “Hey man, I get it…” but at the same time, I can’t help feeling hurt. I didn’t ask for this disease. I didn’t ask not to be able to have kids, or to have an IV in my chest, and I sure as hell don’t want my life to be cut short because of something completely out of my control.

But this is our reality. Those who want to judge us and put us down for having pulmonary hypertension aren’t people we want in our lives anyway. I hope all of you are able to find people who love you and care about you despite your disease. I know I have an amazing group of friends and family that are supportive, loving, and understanding. I don’t know what I’d do without them really. My boyfriend once told me that having PH is kind of like a “good people detector.” The ones who are genuine and caring will stick around, while the shallow jerks will just walk away.

Don’t ever apologize for your position. When people tell you that you’re gross or weird, just ignore them, or have some kind of witty comeback to whip at them. I refuse to let their words bother me anymore. When it’s hard you can always turn to your friends and family for support. Don’t feel badly about stopping for breath…-even if it means sitting down in the middle of the grocery store. Don’t feel badly if your pump alarms in the middle of a lecture or performance. Don’t let uninformed people get you down, and if they are being really rude, maybe the best comeback is to explain to them what pulmonary hypertension is in a really nice way… they’ll probably regret how rude they were. Maybe next time when they approach someone they won’t be as offensive, and then there’s one more person educated about this disease! Accepting PH in my life has been challenging. For most of my journey with PH, I’ve tried to deny that I have it, and always felt embarrassed and scared trying to explain it to anyone. By trusting myself I was able to get to the point where I have everything I need to take care of myself: family and friends who support me, medical professionals I trust, and an inner strength that keeps me afloat when strangers are looking at me funny. Once you accept yourself and the new you with PH, it is strengthening and makes daily events less stressful. Stay strong everyone, and don’t apologize for what you need to do to get through the day!