Share Your Life in Purple Story

Pulmonary hypertension (PH) has significant emotional, social, and financial impacts on patients and their families. PH is also often referred to as an “invisible disease,” meaning that those who have it may not look ill.

If you live with PH – or help care for someone who has PH – you know first hand how the disease can impact every aspect of life. Raise #PHAwareness all month by sharing parts of your Life in Purple story. Please note that PHA Canada may share stories, comments, photos, and videos posted on the Life in Purple Challenge website through its other digital and print platforms, including PHA Canada’s social media channels (Facebook and Twitter).

Use the tools below to post stories, comments, photos, and videos about the impact PH has on your life. Share your posts with your networks on social media to help your friends and family better understand what it means to live with PH. Tag your post with #LifeInPurpleChallenge to be included in the national conversation!

How Has PH Impacted Your Life?

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In June of 1996 was the birth of our beautiful lil girl, when she was born she was cleared by drs of a clean bill of health. I felt like for once everything seem to be going right in my life and I couldn’t be happier. That was short lived. When our daughter jazmine was four months old she had gotten what I thought was a bad cold until on my way to take her to the ER her lips were turning blue while coughing, it was then I knew that our lives were about to be hell. I took her to the nearest hospital and from there she was transferred to children’s hospital in Columbus Ohio. Shes now 21 and has spent most of her life at this hospital. They then discovered she had an enlarged heart and three wholes in her heart (AVSD) and PH. She went though numerous surgeries and even had a pacemaker put in when she was 7 . Up until three years ago her meds were
- Coumadin
So basically nothing for PH up until three years ago she was put on adcirca, and still to this day as far as Ph meds that’s all she’s on.
She also has gotten kidney stones three times, unfortunately the kidney dr at children’s decided he didn’t want to take her case on when she got the last one because of her age (I was devistated!) but having no other choice I was forced to take her to a different ER and it was the biggest mistake I ever made. The admitted her and did surgery the next day to remove the stone, she came out of surgery in more pain then going in , needles to say those drs knew nothing about PH, she was released from that hospital when her 02sats were in the 70s and was careflifhted to children’s that night, it was then that the kidney dr there said since this all happen he will continue to see her. While she was in the hospital for three weeks following this kidney stone surgery her PH dr had talked about switching her PH meds but we later found out the couldn’t because it will make her heart valve leak even more. So her last check up with the PH dr two months ago we were told that the only med she is on for her Ph has to go from 40 mg to 20 mg because we found out it too is making her valve leak more even after being on it for three years. It’s frustrating when u have to watch ur daughter struggle to breath and even with pain and most drs have no clue how to help her. I am now having high anxiety and I am developing depression and it’s getting worse by the day but I have no dr and she is my main concern.


About 12 years ago my dog slipped his collar, I tried to catch him but he ran gleefully down the road and up a hill. I thought "oh boy, here goes". I tried to run but quickly lost my breath. So walking it was then came the little hill that seemed like a mountain to me. Halfway up my chest and back began to hurt. The world began to swirl and I found myself falling. It hadn't happened before I was only in my 30s. My dog seeing me fall came running and began licking my face, worried. I got him leashed and after a few minutes walked slowly home. I had been diagnosed with asthma but the pain told me this was different. I called an ambulance and they rushed me to the hospital. Again. I spent more time in the emergency room that year than most do in a lifetime. The doctor said he couldn't find anything wrong. Just rest a few minutes have a breathing treatment and I will be on my way in a couple hours. After the treatment I was lying there and the pain was getting worse. The nurse was ignoring my call light because I wasn't a priority the doctor said I was fine. I did have a monitor hooked up and a cardiac nurse happened to be walking by and glanced absentmindedly in my direction. She stopped and took a few steps back looking at the monitor. She hollered for my nurse and asked why is your patient in tachycardia? My nurse looked at me and said oh no and ran for the doctor. they called a cardiologist who after a few tests decided to do a heart catheter immediately. When I awoke they informed me that the pressure in my lungs was high and set an appointment with another cardiologist. A month later after more tests the doctor called on a Saturday and asked my husband and I to come in immediately. We got to the empty medical center and he asked us to sit down. He told us that I had pulmonary arterial hypertension. As he is explaining he began to tear up and said I know you are young but I think you need to go home and get your affairs in order I don't think you have very much time left....we were dumbfounded. Horrified.. heartbroken. I found a specialist 4 hours away and made an appointment. He informed us that it wasn't as bad as all that. They had treatments now but the disease was so rare most doctors didn't know enough. I began treatment with revatio.but the disease continued to progress and I ended up in a wheelchair. About 5 years ago a doctor who specializes in pah moved into our city. No more driving 4 hours one way once a month. Yay! I made an appointment and he ordered another heart catheter. He changed my medication to sub q remodulin and eventually added opsumit. I began to feel better. I was soon able to walk without fainting. I could after time walk up to a mile. Last year I had increased my excercise ability to five miles twice a week I take dance lessons. My dog who had been the cause of that first attack has made himself a service dog. He knows when I am about to have an attack and will stay by my side to catch me should I fall though thankfully I have not had any instance like that in more than a year. I know eventually I will get worse again but for now I am living life to the fullest I can. Hope springs eternal!


Thank you for sharing your story.


I was diagnosed with PH in may of 2015, for a year I had been SOB on exertion ,I saw four pulmonary doctors and a cardiologist but no plan of care was found.Actually I was told it was in my mind.My brother became alarmed when I told him that I had to rest for more then 5 minutes after walking from work to my car-a short walk ! I was diagnosed at University of Penn by Dr Harold Palvesky with a stress echo and then a cardiac cath. I could not take vasodilators due to low BP. Incidentally my SBP went from 80's to 180's with lifting IV bags over my head for 4 minutes, I reported i wasn't SOB with this maneuver. MY cardiac index also dropped dramatically in this period ,I have diastolic heart dysfunction,the volume my heart pumps with exertion drops quickly. I have improved with Coreg 3.125 mg twice daily and almost daily walking. I have been walking regularly for 4 years now, slow but sure. Certain maneuvers causing Sob ,dizziness and chest pain i.e Raising my arms over my head, bending over ,walking more rapidly then my > 20 min mile., stairs.Still I find fatigue the worst and that frequently my condition is invisible to most. I am often told I could work full time ,that I am cured even today this happened. There is nothing I desire more then being able to work full time, to run like i did just a few years ago.To be able to clean my apartment or shop ot spend anyway in activity that most take for granted. I know that I am doing much better then most with this condition and I'm grateful. I would love to raise awareness without seeming or feeling whiny. Much progress has been made in treatment since the 1990's when i cared for patients with PH ,earlier diagnoses would improve many lives.So challenge those you know to learn about PH and challenge physicians, nurses and other providers to learn about PH.


Thank you for sharing your story.


My PH-journey started around two years ago.
I started having the usual symptoms like being out of breath, feeling tired & exhausted and I also lost my appetite in autumn of 2015. Going the 300 m (350 yards) long distance from my company's car park to the office was like running a marathon for me. I kept stopping for at least 5 – 6 times and covered this up by looking on my mobile or pretending taking phone calls. I couldn't believe that all of a sudden, I felt so worse.
I kept saying to myself, that it was probably a protracted flu, maybe even pneumonia, that I was overweight and that it was highest time to get fit again.
I even flew to New York City in November/December of 2015, not knowing that I was already severely ill at that time.
In January of 2016 I went to see a pneumologist who x-rayed my thorax to check on pneumonia but the only thing which he noticed was my enlarged right heart.
Knowing that this wasn't normal and that it would probably lead to further consulations with other doctors, I hesitated seeing my GP, as job colleagues were about to go on holiday and I didn't want to ruin things for them. How stupid and lightheaded can one be? Yeah, I know …
I kept on working but my overall health condition kept getting worse and at the end of March 2016, I literally couldn't go no more. I felt completely shattered and kept tidying up my desk, preparing as much as possible for my colleagues and told them I would see my GP on monday morning. That was also my last ever day at work.
So when I saw my GP he immediately referred me to a special cardiology clinic here in Hamburg/Germany. The doctors there first thought I had a hole in my heart until they performed a RHC and diagnosed PH.
Luckily for me, they then referred me to the University Hospital in Hamburg where there is a special PH outpatients department with a lot of knowledge & experience. Hamburg is one of the leading PH centers in Europe.
It took another month until I got an appointment here. In the meantime, I was put on diuretics but unfortunately the dosis was way too high and nobody told me to stop this after a week or so. What happened was, when I went to the appointment in the PH outpatients department in May of 2016, the doctor immediately admitted me to the ward, as I was suffering from severe kidney failure. As if PH wasn't enough already.
I must have had an army of guardian angels surving this and my kidney levels ended up getting normal again though now I always have higher creatinine levels than a healthy person.
Anyway, I was adjusted with PH medication (started with Opsumit & Revatio) and after 10 days released from hospital feeling so much better already.
Two months later, Revatio was exchanged to Adcirca which I am still on.
Unfortunatley I had to admit myself to ICU in August of 2016 as I constantly had synkopals as my electrolyte balance hit rock bottom due to taking low dosed diuretics but no potassium to balance it out. I stayed another 10 days in hospital until everything was in balance again.
Then in October 2016 I went on a 4 week long rehab, hoping that I would be able to go back to work afterwards. Of course this was a naive thought as the rehab clinic attested me to be unable to work. This came as a complete shock, cause being 48 years at that time, I felt I was way too young applying for reduced earning capacity pension.
Coming back from rehab in November, I applied for pension and also for a pass for severely disabled persons. Both of it was granted in early 2017.
But things wouldn't stop getting worse. I had another RHC at the beginning of 2017 which showed that my lung pressure rose. One doctor even mentioned the TX and that I should think about this option. This came as a shock out of nowhere to me. I was seriously devastated.
Luckily the head of department brought the triple medication option up. I thought „Yes, why not try Uptravi/Selexipag?“ but he put it off by saying „It would have the same effect as if I was taking M&Ms to heal PH“.
His magic word was Remodulin!
This was a nightmare to me, as I heard so much negative things about the side effects and esp. the site pain of the sub q pump. He was striking out, that this was the only possibly effective option for me.
I need to mention, that in Germany it is possible to have an infusion pump implanted in your abdominal which delivers the remodulin right into your heart. No fuss with covering up the site when showering, no site pain and all this stuff. Usually this is only done after you've had the sub q pump for a time span of 6 months or so, to make sure, you're used to remodulin and being sure you are responsive of the therapy.
Well, I was lucky that my doctor agreed to „speed things up“ with the implanted pump.
So what happened was, that I went into ICU in March 2017 and I was dosed up with remodulin for 5 days, getting a dose increase every 8 hours. This was like hell on earth. You could easily set your clock, that half an hour after getting a new dose up, I had to vomit and suffered of diarrhea, the other usual remodulin side effects not to mention.
After 5 days, having a good level of remodulin, I had surgery and the infusion pump was implanted in my abdominal. Unfortunately a few days after surgery, a hematoma spread around the pump in my abdominal and it got bigger so that the surgeon decided to open up the stitches again to remove the hematoma. This surgery could only be done with local anesthesia and it was quite painful and nasty at times and the surgeon and his team were really worried that I would go through the roof because of the pain but all I was worried about was my butt which was kinda dead and I kept asking the surgeon every now and then when he stopped removing the hematoma whether I could relocate my butt to get back a feeling into it. I was later told by a nurse, that the surgeon and his team almost had to bite their hands not to burst out laughing. They were worried about the pain I was going through and all I could think about was my butt.
Anyway, after this surgery I needed a blood transfusion but luckily everything went uphill after this. The stitches healed, the swelling of my belly eased and though needing oxygen after this surgery at first, my levels rose and got better and better.
It is now 7 ½ months since I had surgery and it was definitely the best thing to happen to me. I just had a check up appointment on wednesday (15th) and my PO2 level is at 79 % and I achieved 514 meters in my 6MWT (improved 34 m in comparance to my 6MWT in July). I feel so much better, being able to walk long distances again and I can even take stairs without having the feeling that my heart & lung is about to explode.
I am really grateful for my doctors and their knowledge and for „forcing“ me into Remodulin therapy. I am quite lucky that I don't suffer from the usual side effects many people have to go through.
In retrospective I am happy how life has evolved. Surely I could easily do without PH and all the things which came along with it. But I am more careful about my health right now, keep resting more and am not overdoing it. However, I still don't let PH dictate my life!
My motto is: Accept and respect this deadly disease but don't let it rule your life!
In October, I took my first ever flight since being diagnosed and I flew to London and spent some days there. I will return there in January, with special inflight oxygen though I wouldn't need it in everyday life. It's just a precaution and it makes you feel more secure.
I have lost around 20 kgs (still need to loose more to reach my BMI and possible TX-weight) and I am dedicated to help other patients who just got their diagnosis.
PH and the internet and social platforms have brought many new wonderful people into my life and I wouldn't want to miss that. I really hope that I will be stable for a very long time and that „the little alien in my abdominal“ will help me to lead a long life. "Remo can do!".


I need to add that after my last TEE in December 2017, the size of the RA actually did reduce in size. It is now 1/3 smaller than it was in July 2017. So as I like to say "Remo can do!".


Thank you for sharing your story.


When you have Pulmonary Hyperension, house chores are harder than for most. It takes me hours to do mine because i have to rest in between the hardest ones and this is my #LifeInPurple! #LifeInPurpleChallenge #livingwithPH #PHwarriors #PHawarenessmonth #everythingpurple 💜💪


Soon I will be heading out for my first Toastmaster conference without Harry since I met him at my very first conference in the spring of 2003. I have a 7 minute speech tonight which will be about the amazing journey we had during his whole "nearing death" experience. Some think it is too soon for me to talk about this (and yes, it is still raw and hurts beyond belief most days) but this is my message now and the opportunity to share it is too good to miss. It is not a depressing message but one filled with hope and light and so much love.
As some of you know, I have been super whacked by a cough for the past 8 days. Still struggling but on the mend now for sure. It has left me weak and vulnerable though so I am praying for extra strength for tonight!
I love speaking and teaching and sharing so this is my sweet spot place tonight. Sunday's workshop on TED for Toastmasters will be a breeze compared to tonight!
I am setting my intention this morning that I will step onto the stage tonight with courage, strength and dignity and speak into the hearts of every person in the audience!
Time to start a new conversation about embracing death without fear!

Jane Sernoskie (gibson)

Well its coming up to my 1 year anniversary with IPAH and I want a divorce from IPAH. It has rocked my world to say the least and at the young age of 26 I was planning on a different type of life. I was planning on continuing with my career as a teacher, I wanted to be a mother, and I wanted to continue to play hockey. After hearing that most likely those things arent recommended i mulled it all over for a few months and I decided not to give up my dreams of achieving my goals. I was lucky enough to get a quick diagnosis (all happened within 1 week) and so maybe because I have been caught so quickly that I have a good chance to carry on with my teaching career (just modified) and maybe I can be a mother (through adoption , surogacy or maybe even by having my own) and maybe I can still be involved with hockey but as a coach instead. I decided within this year that I have been given some life baggage (IPAH) but I will keep on keeping on. I have seen people pass around me from this disease and one day it may get me too but I take my meds , exercise, advocate for fair and accessible treatments for all, fundraise for PAH Canada, spread awareness and that is all I can do. The rest is out of my hands. But I am hopeful and positive that a cure is coming! This year thanks to the the team at the Ottawa Heart institute, my family and friends, my new PH family (ottawa support group) and the support from PHA canada I know I am not alone in this PHight and that has given me a lot of comfort and I hope it has for others too. I still am interested in talking to those phighters that are having families or want to have families. Feel free to email me I would love to chat


My daughter, Brooke, was diagnosed with severe PAH at the age of 24 in March 2014. Words cannot describe what we felt in that moment but anyone who hears a diagnosis like this knows. The days and weeks following Brooke’s diagnosis are still a haze. There were no “good” days for weeks, maybe, months. It’s hard to see good when your daughter’s life seems to be crashing around her. She was struggling with the diagnosis; I was struggling with both the diagnosis and the need to “keep a stiff upper lip”. She needed a shoulder to cry on; a rock to hold on to. I had to be that shoulder; that rock. Would there ever be a day where my first waking thought wouldn’t be about Brooke and PH? I couldn’t see it then.

It took a long time but I no longer wake up every morning with PH on my mind. Brooke’s Dad and I still wear our “Phenomenal Hope” bracelets 24/7. We have now attended 3 PH conferences (one in Dallas) and I try to get to support group as much as possible. We get so much from being with people who “get it” and it’s an opportunity to give back for all the support we got in the beginning.

I remember going to our first national conference in Montreal. Brooke didn’t really want to go (she told us on the way home) because she did not want to see “what lay ahead” for her. But it was an amazing experience. We saw and met people “living” with PH. There was no sadness. Brooke was so glad she went. We were all glad we went. We decided then and there that we had to attend an International Conference. Brooke wanted to meet people more her own age with PH. Again, we saw people “living” with PH and so many more young adults with truly remarkable stories.

We have learned many things and are grateful for so many more since Brooke’s diagnosis. These things came with time.

If I could sum up how we try to live our lives today and what we try to remember is that while we plan for the future, we live in the day. I think most people forget that - I know I did. There will be plenty of time to worry about crap when it happens. It certainly is easier said than done. I actually have it written down so I can remind myself when I am not “living in the day”. We cannot let PH “wreck” our “good” days too.

We have seen remarkable progress with medications for this disease in the last 20 years and much more research is ongoing. Life expectancy is much improved. We remain phenomenally hopeful.

As both our girls so often say when they already have enough on their plates - “That’s a future me problem!” I laugh; I’m gonna go with that!


One thing that we don’t hear a lot about when it comes to Pulmonary Hypertension is it’s connection to drug use. I was sick before I got sick. I was trapped in a cycle of addiction. At one point in my life I felt that I actually wouldn’t be able to function if it weren’t from the artificial energy I was obtaining through my use of methamphetamine. I was a functioning addict, or so I told myself. I always had a place to live, I almost always had a steady job. When I was diagnosed with PH I was 10 years into my addiction, my doctors told me that I had to quit if I wanted to live. I was more scared then I had ever been in my life. I was scared because I didn’t know how I would live without the drugs. Which looking back is funny because you think I would have been scared because they told me that I would die if I didn’t quit.
It was a long battle for me. I didn’t quit over night. It was probably a year between diagnosis and ending my addiction, but I discovered myself along the way. I learned that I was stronger than I thought I was. I remembered that I was loved by my family, and that I wanted to love in return. I learned no matter how hard it seems in the beginning if you take small steps and go one day at a time you can accomplish many things in life. Today I am about to graduate with a Bachelor's degree in Business Administration. I have been clean for nearly 7 years and I’ve never felt healthier than I do now. As weird as it is receiving this diagnosis actually saved my life. It made my life better than what it was before. Sure there are still struggles some days, if I overdo it I’ll spend a day on the couch recovering. I’ve learned to listen to body and give myself time to heal when I need it. I worry sometime that the meds will stop being as effective as they are now, but that is not today and I will live my life for today.


Totally inspirational account of your PH diagnosis and how you pulled out all the stops and overcame your addiction. I'm presuming you had to totally change your lifestyle- friends,etc. There are many similarities between us- addiction and PH to name just two. You've made me really think about what I want to do with my life whilst I still have some options. I wish you all the best.


Thank you for sharing, Allison. Your courage - then and now - is really inspiring.


What's the silver lining when you have PH? For many patients, receiving PHenomenal care from a passionate and devoted medical team makes all the difference in the world. For PHighter Wanda Robinson Saunders and Dr. Sanjay Mehta, laughter is an essential component of treatment!


My #LifeInPurpleStory #mystory #PulmonaryHypertensionAwarenessMonth #PHACanada
Most of you know my diagnosis story- I was short of breath and tired for a whole year before I took my symptoms seriously. I kept telling myself I was lazy and out of shape. At diagnosis, I was in right heart failure and I had severe Pulmonary Hypertension. What many of you don't know, is what it's like living with the disease on a daily basis.
Did you know that:
- I'm always tired/exhausted?
-I take 11 pills a day, on top of the 24/7 continuous IV medicine?
-I suffer with uncomfortable side effects? (leg, foot and jaw pain, flushing, headaches, bowel/digestive issues, nausea)
-I can't bend, lift, run or swim?
-extreme heat makes me short of breath, and so does extreme cold?
-climbing stairs/ hills is a challenge?
-I can't do much housework?
-a busy day will practically render me out of commission the next day?
-I suffer with anxiety?
-I cancel many, many plans because I just don't have the energy?
-walking or standing for long periods of time is painful?
-I always consider how much walking I'll have to do and ask myself if it's worth it?
-I still feel guilt for not working?
-I still feel guilt for not being 100% available to my kids?
-when you see my vacation photos, I post the ones I want you to see: the ones of joy and happiness- not the ones of pain and anguish and exhaustion?
-sometimes I have to sit down -even if that has to be on the floor in Wal-Mart?

Juergen Buettemeyer

"Juergen, you have pulmonary hypertension. I want you to see a respirologist sooner than the scheduled appointment in September." This is what my GP said on March 25th, 2013, my fifty-eighth birthday.

How did I get to this point? A long needed right knee replacement surgery in July the previous year brought on shortness of breath within 6 weeks of the operation. Of course, like everybody else, I thought that I was out of shape. I had been much less active recuperating. Soon I could not manage the one flight of stairs in our house and even walking on level ground had me stop and catch my breath every dozen meters or so. After ignoring the symptoms for about 6 weeks, I finally saw my GP. The usual it's probably asthma diagnosis was made. An X-ray showed some abnormality in the one lower lung, but the inhaler would probably help to clear that up. Additional visits to my GP in his office and also visits to the local (small town) ER brought no relieve or improvement. Then, finally on my third ER visit, the triage nurse asked me if anybody had ever tested for blood clots, since blood clots are a major risk factor to knee and hip surgeries. Blood tests that night and a CT scan in another hospital confirmed that I had pulmonary embolisms, PE.
The treatments that followed included staying in hospital for more than one week with blood clod busting injections and warfarin and oxygen 24/7. After I got released from hospital, things were getting better and soon the oxygen was stopped around Christmas. What a relieve, no longer having to carry the portable oxygen bottle or being tied to the concentrator in the house. But less than 2 month later I was getting worse and an appointment was made for a respirologist. This respirologist insisted on an echo-cardiogram to be done prior to the visit. And that's how I got to be in my GP's office on my birthday.
Pulmonary hypertension... I really only heard hypertension and surely there was a pill or something to be taken for hypertension. Lots of people have hypertension. Luckily I did not use Dr. Google so it was left to my respirologist less than 10 days later to tell me how life threatening this disease is. Chronic ThromboEmbolic Pulmonary Hypertention or CTEPH is the exact classification of my disease. Unlike a lot of PH patients that don't know what brought on their PH, my condition is secondary to the PEs I had. Only about four percent of people that had pulmonary embolisms will get further complications within two years of the PE. Oh lucky me! CTEPH is also a form of PH that can be cured with surgery where the clots and scar tissue can be removed from the blood vessels of the lung. In my case, the obstructions in the lung are so far down in the smallest of arteries that surgery is not (yet) possible.

There are a lot of random things that came together to give me this disease. There are also a lot of things that fell into place once I got CTEPH. I am under the care of the most caring and compassionate doctor I have ever met and in the fall of 2013, just months after I was diagnosed, a drug became available here in Canada for CTEPH. It's Adempas (riociguat). To today's date it still is the only treatment specifically available for CTEPH, and in my case it works!

Pulmonary hypertension has changed everything in my life. I had to stop working and that brought on some financial challenges. Everyday activities are challenging. Medications that I take are inexpensive from just a few dollars for a month supply of warfarin or my diuretics to thousands of dollars for my Adempas and I count my blessings everyday that I have drug-plan coverage for that.

And finally I have met a lot of people that suffer with the same disease through groups on the internet, conferences and symposiums and most of all through my local support group. I highly recommend that anybody who has PH reaches out to this community. You don't have to walk alone. Last, but not least, a big thank you to my wife and daughters for their continuing support and care.


Thank you for sharing!

Jamie Kretzschmar

Everything I added yesterday was from my memories of when I had Pulmonary Hypertension. It started when I was just 21 years old, and I wasn't able to walk up a flight of stairs.

It is incredibly daunting to be told you have a fatal illness at that age.

My journey was split between my body slowly dying while some of the greatest moments of my life occurred. I met the love of my existence, I got engaged, and then I had a heart attack. I started school, and then my body completely shut down on me.

The worst and best day of my life was when I was told I had 24 hours to live without a transplant. I was flown out to Toronto General Hospital where Amy ended up signing my transplant papers because I was too sick to hold a pen.

Somehow, miraculously, lungs became available on my first run. Within the 9 hours of surgery, my family relocated my wife and me to Toronto, where my family would stay for the next 3 months while I recovered in hospital.

I am now strong, confident, a college graduate, a wife, a puppy/cat owner, and a proud nerd.

Bless all nurses, doctors, friends, and caretakers.



Thank you for sharing!


I was diagnosed with PAH in 2008 at the age of 38. It was a daily struggle to walk, dress and have a conversation. Swelling developed and I urged my family doctor to send me for tests. If i didnt push i dont think he would have sent me. After a stress test I was diagnosed with PAH. I started to see a respirologist and was put on drugs. I later learned of the PH support group in Toronto. Going to the meetings and meeting the people was the best thing I could have done. I was told of different specialists and drug options. I immediately was referred to Dr. Mehta. Best specialist ever. I learned of the different drug options and support programs as the drugs were becoming financially impossible for my family to afford. I am on 3 different drugs and warfrin. I feel great at this point and I hope the feeling continues for many years. My sister passed away from the disease in her early 20s over 20 years ago. Back then the only opton was transplants. The drugs we have today to treat this disease were not available back then. Taking it day by day and enjoying life.


Thank you for sharing!


My PH journey is slightly different from the average PAH story. I was ill as a baby and grew up in and out of the hospital. I recall always being short of breath when walking the short distance home from school. I couldn't keep with my friends and always lag behind walking. It seemed normal to me. It wasn't until on my 25th birthday that I experienced extreme SOB, blue lips, and my feets were swollen (new symptom). I immediately went to the ER and that's when they said I had pulmonary hypertension and I was in right heart failure. I had no clue what PH was and thought it could easily be fixed with a pill. They sent me home with supplemental oxygen 24/7, warfarin and digoxin (no longer on the last 2 drugs). Adjusting to wear oxygen was the hardest thing to do, but over time, I realized I was able to do more things with the oxygen on than without it! Since my PH dx almost 11 years ago, I've experienced a few near death situations but I've also had many happy experiences such as being able to travel to France, California and to Seattle to see one of my best friends get married! I learn to realize that life is simply too short to care about what other people think about you and I've become more grateful to the amazing people I've met along the way. This is my #LifeInPurpleChallenge.


Thank you for sharing your story!

Marie Andree Malette

My mother was disgnosed in 2010 after a year of coping with side effects of h1n1. She had pulmonary arterial hypertension. She lost her battle in nov 2015. I was her caregiver. Today, i raise funds and create awareness of the disease. I advocate for better care. As a nurse and as a daughter of a former patient, it's my dutie to do so.


Thank you for sharing your story.


Ph has impacted my life faras my everyday living not be able to have a lot of energy and taking a lot of medication also wearing Oxygen 24/7 not to mention all the doctor appointments but though it all I’ve gained a awesome support system and many phriends.


These are my weekly medications. The little pile on the bed is my 9am dose. They include 3 anti-rejection drugs, antibiotics, vitamins, and meds to control various side effects. Side effects that I experience include gastric reflux, gastroparesis, high blood pressure, and high cholesterol. I had my double lung transplant 2 years ago because of IPAH. Pulmonary hypertension took me away from my family for 3 months while I waited in hospital for my transplant and then recovered. So I gladly take all these medications and suffer with these various side effects because I am here. I'm with my family- being a mom, a wife and a friend.




#PHighter Amanda Littlejohn English received a double lung transplant in 2015, the only "cure" for pulmonary arterial hypertension (PAH). Two years after receiving her new lungs, managing medications is still a big part of Amanda's daily life.


I am happy to say I am a 16 year survivor of PH. When I was diagnosed I didn't even know what Pulmonary Hypertension was . I was devestated to fine out it was a life threatening disease with no cure and at the time the average survival rate was 3-5 years . One of the hardest ways it impacted me was my activity level dropped severely and the fatigue .I had to give up working and it was a struggle keeping up with my girls . In my case I don't look sick . I don't wear oxygen in the day and only at night . Being an invisible disease affects me in a way that people don't realize I'm sick . I get asked things like are you better now .I have limits and have learned to live a new life style within them . My activities are chair yoga and piano . I had to stop sports long ago. I am considered a long term survivor .The hardest part about that is I have seen so many people pass which emotionally just numbs me . I am thankful for every day and every breath and hope one day we find a cure .


Our daughter Olivia was diagnosed at age 3 with severe idiopathic Pulmonary Arterial Hypertension. She was airlifted to the Stollery hospital in Edmonton and immediately began triple therapy including the remodulin pump. Here we are 3 years later and we are continually amazed at all the things she has been able to do. Her favourite thing to look forward to is a camp just for PH patients that we hopefully will get to attend for a second time next year. When she grows up she wants to be a doctor and wants to cure PH.


When I was first diagnosed in early 2016 I was relieved...I wasn't crazy! As the dual therapy of Adcirca and Opsimut started working and I felt better, I was able to wean myself off my oxygen. This diagnosis was a gift. It made me see all kinds of new opportunities and I met all sorts of new people. I discovered that my positive attitude has possibly helped other people. Fundraising is my new passion and I'm actually quite good at it. A cure is just around the corner..I'm sure of it! It may not be my corner but it's coming. Life is good in purple!


I got my diagnosis at the age of 25 in December of 2009. My cardiologist, told me I would have to stop working for good because my PH was way too high. I was put on Remodulin, Subcutaneous therapy which saved my life because my pressure was almost 3000. The site pain never left in my case, so in 2012 I was put on Adcirca and Volibris and entered a research protocol for Uptravi, was taken off the Remodulin. Once i received the real medication, my pressure was so low, I was allowed to go back to work part time, which i did for 1 and half years, but was having side effects problems with this new therapy as well, I had to stop working completely again. I had to learn to live better with this condition, I had to readjust my entire way of seeing life and what was mine going to be for the following years. I've since then learned to accept my limits and the fact that I'm sick. I do little things like cleaning the house, art therapy, and PH activities, I'm truly happy with my new hobbies and interests, this is a new beginning. This is my #LifeInPurpleChallenge


How does PH impact patients and caregivers? Watch our #PHAwareness video to learn more about how PH impacts every aspect of life.

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