Living and Coping with Pulmonary Hypertension
Learning to live with PH can be an interesting journey to say the least. Making a place for this "uninvited guest" in your life that was not of your choosing. Now you are left with the decision of which way to go. You may experience many emotions ranging from blind fear to burning anger, guilt to bargaining with yourself. Either way, it's a process. From your relationships and how they may change and evolve to your own creative process or making plans for the future you are unsure of, to "will I ever work again" and the changing landscape of your friendships. We have tried to offer you something on each of these important subjects. Your Editor
Letting your friends in both mentally and physically. Friendship is the greatest gift on earth and just having someone there to listen or laugh with, to share those fears and dreams with is irreplaceable. They often say a good get together with a friend over a nice meal and a few laughs is just as good as therapy. Learning to reach out and ask for help is sometimes difficult but people are usually only to happy to come to your assistance. There is no shame in asking someone to lend a hand.
Having PH or someone in the family with it can often be hard to cope with. Its important to have a place you can go to unload. Talking to a professional counsellor or even a friend can relieve anxiety and stress. Don't be afraid to ask your GP to do a depression scale test at a mental health review just in case you might need a little extra help. There is no need to suffer unnecessarily or try to be stronger than anyone would expect of you. You would be surprised at how much better you may feel.
Personal achievements can seem far and few between with a chronic disease like PH. You need to remember to celebrate the little things. Don't take anything for granted. Don't save the good china for special occasions & celebrate even the smallest of victories. We live in such a fast paced world fully of activity we are hardly ever still. Take time to reflect, to sit and listen to those sounds around you, to really appreciate the colours and the smells & open your mind to new possibilities.
Relationships with Pulmonary Hypertension
Although your relationships may change, a diagnosis of pulmonary hypertension (PH) does not mean that your relationships have to end. This e-learning guide holds helpful information on navigating all of your relationships as a PH patient.
While maintaining strong relationships isn’t always easy, it is possible to find ways to ensure you’re receiving the support you need and the love you deserve. Here are a few tips to maintain healthy relationships with your family, friends, partners and yourself:
These tips were taken from PHA’s Maintaining Healthy Relationships. Read the entire article for more helpful information. (www.PHAssociation.org (USA))
Working with PH
Working with PH may at first seem like a challenge, but it is possible! This guide provides tips to help balance working while taking care of your PH.
Tips for Working with PH
Medical research shows that creative outlets – whether they be through writing, painting, photography, or other activities – can lead to improved physical, mental and emotional health. Many patients utilize self-expression as a helpful way to cope with pulmonary hypertension (PH). These resources can help guide you towards your own form of creative expression.
Finding Ways to Relax through Creative Expression
Music Music can be therapeutic and stress relieving, whether you listen to it or create it yourself.
Journaling, Writing and Blogging Writing is something everyone can do - whether you share it with others or keep it to yourself.
Artwork Expressing yourself through art – such as painting, drawing sculpting – can give you an outlet for feelings that you just cannot put into words.
Photography If you don’t feel compelled to create with your own hands, capturing life through the lens can be another great way to express thoughts and feelings.
Meditation While meditation is not an outward form of creativity in the same way as the previous examples, meditation can help calm your mind and allow you to refocus your energy to tap into your creative side.
Self-Empowerment in the New Year
Make this the year to stick with your resolutions. Learn about PHA's resources that can help you empower yourself and make a commitment to a healthier you this year!
Maintaining a Positive Self-Image Pulmonary hypertension is a “whole life” condition that can influence everything in your day-to-day. Changes to your body, both real and perceived, can be difficult to adjust to, practically, intellectually and emotionally. Here are a few strategies that have helped others with PH reflect and improve upon their self-image.
INTRODUCING PH PATIENT AND BLOGGER - SERENA LAWRENCE
Serena Lawrence graduated from the University of Waterloo 2012 where she earned an honors degree in Fine Arts. After she was diagnosed with Pulmonary Hypertension in 2013 she started the blog called The PHight or Flight Project where she began freelance writing and curating guest writer content. Serena enjoys a good cup of tea, little adventures and her Boston Terrier named Sammy. CLICK TO GO TO BLOG
4 Things not to say to someone who has pulmonary hypertension!
I found that after I was diagnosed with pulmonary hypertension, I received a bunch of off-brand advice. I realize the majority of what I heard from others was an attempt to make the situation better. Unfortunately, some of the words I received at times have been hurtful despite the well intentions behind them. I began to find it quite difficult to feel like I was biting my tongue in an attempt not to hurt other people’s feelings, even though their advice felt like it was minimizing what I was going through. As a blogger, I also became scrutinized online by strangers who tried to give me unsolicited advice and “words of wisdom” that simply do not apply to my situation.
1. “At least it’s not cancer.
”Pulmonary hypertension was recently upgraded to a rare disease, after being considered an orphan disease for quite some time. What does this mean? Pulmonary hypertension affects only a very small percentage of the population. For example, I have idiopathic pulmonary hypertension, which only effects about 1 out of a million people. In Canada, about 2 out of 5 people will develop cancer, and 1 out of 4 Canadians will die from cancer, based on 2010 estimates.
Based on these statistics, we can see that cancer is a more prevalent disease, meaning more people are aware of how devastating it can be. However, many pieces of literature about pulmonary hypertension state that it is worse than cancer. There is no chance of remission or a cure with the current treatments available for pulmonary hypertension. Treatments for pulmonary hypertension have advanced within the past decade, but unfortunately, it is still considered a progressive and fatal disease. Many of the treatment options also cause terrible side effects, and can be very invasive.
2. “You don’t look sick.”
Pulmonary hypertension can be both a very visible and an invisible disease. Some people with pulmonary hypertension may require supplementary oxygen, a mobility scooter and/or visible medication such as Flolan, which is administered 24/7 directly to the heart through a rather large pump. Other people with pulmonary hypertension may not require oxygen, or may have less discreet medication (like oral and inhaled.) Even when I needed to use a mobility scooter and oxygen, I found that people still questioned the severity of my diagnosis because I was rather young and still looked OK.
I think society has this vision of what a sick person should look like, and it is often someone who looks ill due to the side effects of chemo and radiation. Some of us may look totally “normal” on the outside. Pulmonary hypertension affects each person very differently.
You know that quote “be kind; everyone you meet is fighting a hard battle”? This rings especially true for people living with pulmonary hypertension, which is both very taxing physically and emotionally. It is difficult to adapt to such a heavy diagnosis. I was diagnosed over two and half years ago and my physical limitations still feel foreign and frustrate me to the point of tears. Feeling like I have no stability in terms of my future is also very confusing, and, well, devastating.
3. “Eat, pray, love
”A lot of people who have never faced pulmonary hypertension will try to offer advice. I believe that most of the advice that I received (no matter how insulting or useless) is coming from a good place. People want to help. People want to be problem solvers.
One of the most infuriating pieces of advice I have received over and over again from strangers online and even people I know in real life is that I should go on some “eat, love, pray” mission. Dozens of people have told me that if they were me, they would travel the world and try all the exotic foods of the world before the worst of the worst happened.
Some people with pulmonary hypertension might be able to travel the world, others unfortunately may not. Why? Well, travel insurance would be very difficult to get. The whole nightmare of traveling with medications and supplementary oxygen. The chance of getting ill. Flying can be dangerous for some people with pulmonary hypertension because of the altitude. Oh, and many people with pulmonary hypertension have to be very careful with sodium intake. Too much salt can actually cause heart failure! Trying a new restaurant in town can be very scary; I can’t imagine trying to order a meal in another country. Traveling is expensive, and so is having pulmonary hypertension. And one more very important point…
Movies and books have a tendency to romanticize having a serious illness. It is important to remember that not everyone with pulmonary hypertension may be physically able to travel. Simply put, many people may not feel well enough to travel. The side effects of medications can be disabling, and this is without the physical limitations the disease may cause.
4. “Do this”
After diagnosis, I found that a lot of people who had never even heard of pulmonary hypertension tried to give me advice on how to get “better.” I believe that most of the strange advice I received has been from a well intended place. People want to be fixers and problem solvers, but sometimes, advice can come across as very hurtful (despite the well intentions.)
For example, many people associate the word “hypertension” with an unhealthy diet. Friends and strangers alike started offering me diet advice. I do believe that eating right can help with your overall health, but at the same time, pulmonary hypertension is very different than regular hypertension. There is no evidence that a certain diet can cause pulmonary hypertension. By the same account, going vegan and drinking green juices probably won’t be the magic cure I dream of. I was actually vegetarian before I was diagnosed and ate pretty healthy, minus the occasional poutine (did I mention I am Canadian?)
You should probably leave the diet advice to a professional. If someone wants your advice on something in terms of diet or spiritual guidance, let them come to you. It is OK not to have all the answers. Sometimes listening is the most helpful thing you can do!
More from Serena Lawrence.... Misconceptions about Pulmonary Hypertension.
When I was diagnosed with pulmonary hypertension, I learned that it was a rare disease. I had never heard of pulmonary hypertension before my diagnosis, and I learned that none of the people in my life knew about the disease either.
For those who might want, or need, to know, here’s some points to keep in mind:
1. Pulmonary Hypertension is Different from Asthma
A few of my friends tried to sympathize with me when I was diagnosed with pulmonary hypertension by saying, “I understand how you feel. I have asthma.”
I’ve had asthma attacks, to the point where I was hospitalized for a week. From my experience, asthma and pulmonary hypertension are very different diseases, even though they both cause breathing problems. I am not trying to downplay the severity of asthma. Asthma can be a very dangerous disease, but generally, it is a manageable disease.
People know what asthma is, there are far more medications to help treat it. There are more specialists and doctors available who understand and treat asthma. Although it can be life-threatening, asthma usually isn’t usually considered fatal. Growing up with asthma, I was never really afraid of what my future might hold health-wise. I was never afraid that my asthma might stop me from doing something. It never prevented me from being physically able do a routine task, have a career, move out, or have children. Unfortunately, pulmonary hypertension has done all of those things.
While asthma and pulmonary hypertension are both diseases that can make breathing difficult, it is important to remember that pulmonary hypertension is considered to be much more severe and life threatening.
2. My Lifestyle and Diet Didn’t Cause Pulmonary Hypertension
Most people know what regular hypertension is. Most people do not know what pulmonary hypertension is, and how it differs from regular hypertension.
I found that after diagnosis, many people thought that I had done something “wrong” to cause my pulmonary hypertension. Some thought that my diet must have been bad, others asked if I smoked. (I never smoked a day in my life and was a vegetarian who tried to eat mostly healthy foods when I was diagnosed.)
Sodium can certainly make the symptoms of pulmonary hypertension worse, but my diet didn’t cause pulmonary hypertension.
Bad karma from another lifetime did not cause my pulmonary hypertension, either. (I wish I was kidding, but multiple people have tried to blame bad karma from a past life on my diagnosis.)
3. Out of Sight, Out of Mind
I spent over the first year after being diagnosed with pulmonary hypertension on oxygen nearly 24/7. I remember several months after I was diagnosed, I finally went out to a coffee shop with my boyfriend. I was at a point where I could finally take my oxygen off for small spurts while sitting.
My boyfriend took a picture of me sitting without my oxygen and I shared it online. I shortly received nearly 50 messages from friends and family congratulating me on getting “better.” That was an awkward conversation to explain to people — especially 50 times. Not everyone with pulmonary hypertension requires supplementary oxygen, and sometimes people only need it for various activities like flying, sleeping, or walking.
The absence of oxygen doesn’t mean that someone’s pulmonary hypertension has gone away.
4. Just Because You Can’t See It, Doesn’t Mean It’s Not Real
Most people with pulmonary hypertension do not look sick. Even when I relied on oxygen 24/7 people looked at me with a puzzled face. I looked the same, minus that tank I was tethered to. If pulmonary hypertension is so serious, why do some of us look so good? (We’re cute, we can’t help it!)
Simply put, pulmonary hypertension is an invisible illness. Many people with pulmonary hypertension may look “fine,” but the symptoms of the disease and the side effects from the treatment can range in severity from patient to patient. Unfortunately, many people equate how good you look with how good you must feel.
Having to explain how serious pulmonary hypertension is just because it’s invisible can be very hurtful. Next time you see someone who looks “fine” using an accessible parking spot, don’t question their right to park there if they have the proper permit. Not everyone who is disabled requires a wheelchair. In fact, not everyone who is disabled requires medical equipment!
I might look like your average 28 year old, until you need me to bend down to pick something up or go up a flight of stairs.
What is the biggest misconception someone has said to you about pulmonary hypertension?