PHighter Friday: Brooke

Ever since I can remember, I loved being busy. So much so, that at 4 years old my parents enrolled me in almost every sport imaginable – dancing, figure skating, gymnastics, swimming, the list goes on and on.

Figure skating seemed to stick and over the next 17 years, the sport would take me on some pretty spectacular adventures. I spent my entire childhood on the ice – 4, 6, 8 hours a day and by the age of 14, I was a national level athlete in both singles and pairs skating.  I represented Canada at several international skating events and spent hours in the gym when I wasn’t on the ice.  My aerobic capacity was second to none.

Which is why I found it alarming, in the spring of 2013 (only a few years after retiring from figure skating) that I was unable to keep pace with my Mother during a charity bike ride.
At the time, I brushed off my inability to breathe as simply being out of shape and found comfort in the idea that more training would help.

Unfortunately, it never did.

Fast forward to February 2014 when my world was forever changed.
It was the morning of the 2014 Olympic Gold Medal Hockey Game, Canada vs the US, and my sister and I were walking downtown Toronto to meet some friends for the early morning game. Out of nowhere, I had to stop. It’s hard to describe what I was feeling in that moment because I can’t really recall. I was fully aware of what was happening around me but I was struggling to even breathe. Needless to say, I visited my local ER shortly after – thinking I would be told I had asthma. Long story short, after almost every test in the book, I was discharged ten days later, with a mystery diagnosis and referrals to both a cardiologist and a respirologist.

It was on March 19th 2014, during my appointment with Dr. Granton at the Pulmonary Hypertension Clinic at Toronto General Hospital that I first heard of Pulmonary Hypertension.

With my PH diagnosis, my world was turned upside down.
Not only was I diagnosed with PH but I also learned that I have two congenital heart defects, both of which made it a miracle that I was able to compete at such a high competitive level when I was younger.

So then came the next dilemma – do ‘we’ operate on the two congenital heart defects (Atrial Septal Defect and Superior Vena Cava Displacement) in the hopes that by correcting these two defects we would stabilize the pulmonary hypertension? Or do we treat the pulmonary hypertension and the congenital heart defects as two separate entities?
Again, after more tests than I’d ever care for, it was decided that there was too much risk involved for the potential reward with regards to correcting my congenital heart defects. They would stay!

To limit the progression of my pulmonary hypertension, I am currently on Adcirca, Tracleer, and Xarelto (even though my PH is not related to blood clots, there are studies that show better prognoses while taking blood thinners). These medications are literally saving my life!
My doctors tried me on Bosentan prior to Tracleer but it was causing some less than ideal side effects.

Growing up, I was an independent, young woman who was comfortable and confidant. I don’t mean that in a cocky, over-pretentious way but in the sense that I knew who I was and was comfortable with who that was. After being diagnosed with PH, I felt as though that had been taken away from me. The body I had known and relied on for the past 24 years had failed me.

I found it hard to let my friends into my ‘new normal’ and instead of relying on my friendships to move forward, I found myself pushing them away.
I hate to burden anyone, and with the state of mind I was in post-diagnosis, I felt as though that is what I would be to my friends. Hindsight being 20/20, pushing them away was the last thing I should have done and the last thing they would have wanted.

Fast forward almost two years later and here I am, better than I was pre-diagnosis but still learning to adapt to my new normal. I still find it difficult to talk about my journey with PH and I have moments where thinking of what the future holds paralyzes me with fear, but I try to remind myself to live in the moment. After being diagnosed, I was so closed off from the real world and guarded with friends and family – I refuse to go back to that.

As backward as this may seem, coming from someone with a chronic illness, I am one of the blessed ones. I’m surrounded by some amazing friends and family who would reach the ends of the earth if it would help. I now realize that that’s pretty priceless!

As a patient, it seems that every time I think I have found my footing some test, complication or setback rears its ugly head.
I won’t sugar coat it, adapting has had numerous challenges. I think the hardest part of my diagnosis was realizing that there was no cure; no way to make the incurable go away. Being sick is being stuck in a limbo of sorts where feelings of anxiousness and depression can creep in at any given moment, with very little notice. The future becomes one big question mark (even more so than any other average 20-something).

And although it’s easy to get lost in the negative aspects of Pulmonary Hypertension, I try to remain positive - for as much as PH has taken from me, it has given surprising gifts as well.

Throughout this journey (that I’ve hopefully only just begun) I’ve met some amazing people. PH has intensified my love of life, taught me patience where I had little, and shown me how beautiful and fragile life can be.

Like I said earlier, I love being busy – that hasn’t changed. I currently work a full-time job (that I love), a part-time job (at a local hospital) and go to school part-time (Go Marauders!).
PH definitely makes this tricky and I find that I tire more easily than before but I’m a firm believer in mind over matter, and until I’m no longer physically able to do the things that bring me comfort (like staying busy), I plan on keeping on!

I don’t know why it takes hardship to gain insight, but it does. And as much as I wouldn’t wish chronic illness on anyone, I’m grateful for the insight it has given me.

Being sick doesn’t only make you weak, it makes you strong. It gives you knowledge – you learn to stop and smell the roses. You know it’s not important to sweat the small stuff because you’ve had bigger things to worry about.

 My life may be far from perfect but I am blessed.

PHighter Friday: Sean

The year was 2002, I was still 18 and my mom wanted to go to Colorado because a pseudo-sister was having her first child and wanted my mom there. Not being the one to let my mom travel cross country in the car by herself, I opted to go with. It was going to be great, I was going to be able to go back to where I grew up, see friends/family and most importantly enjoy the scenery I have come to miss more and more each day. The road trip started out like any typical road trip loading up the car, getting fuel and hitting the road. We stopped in Hesperia to get food at In-N-Out and then continued on. It was night time (because no one wants to drive across the Mojave Desert during the day) and I was slated to drive at some point. My mom wanted to drive first, until she got tired, and then she was going to let me take over—or at least that’s what we thought.

After eating and the getting on the road, I fell asleep to make sure I was well rested to take on the second leg of the journey. In Flagstaff, Arizona we stopped for fuel and I proceeded to get sick. Maybe it was bad food… no one really knows—actually, they do. I was going into heart failure but didn’t know it. We continued on the road trip, but I still was sleeping a lot. Unfortunately, my mother had to drive the whole trip by herself because I was just that tired. Something clearly wasn’t right, but maybe it was the food. Ok, not really but we didn’t know better at the time.

Upon arrival to Colorado Springs, I had another episode where I made my mother pull over so I could proceed to get sick outside of the car. Walking around at altitude was difficult, I couldn’t breathe well and it felt like I had an elephant tap-dancing on my chest in stilettos. Walking into a restaurant was quite interesting. Well, I didn’t actually make it into the restaurant, 10 feet from the car the elephant started his Irish jig, and 30 seconds later I was blue and on the ground. I woke up shortly afterward without much recollection of what had happened. However, I had previously had an episode like this four months prior while dropping off a portly cat at my former bosses house before I moved to California. Finally, my mother could see what the black-out episodes were really like. Still, we thought nothing of it. Well, my mom thought something of it, I was oblivious to it probably because of the invincibility complex that most 18 year old males have at that point in their life. After eating a late dinner, I felt a little better, perhaps it was the company, regardless sinister things were still taking place much to our unsuspecting wonder.

Eventually we made it back to the hotel, and walking from the parking lot to the room was a struggle. Horton the Elephant seemed to want to crush my heart with his size huge stilettos and bad dancing. Though out the night I was running to the bathroom, throwing up over and over. Another case of food poisoning? No. A stomach flu? No. The next morning I took a bath to clean up from the night of sweating and puking my guts out. After getting out of the tub I sat on the toilette. Next thing I knew I woke up under the vanity, my head hurting and my chest pounding. I proceeded to get dressed and sat at the foot of my mom’s bed. Not 5 minutes later she walked in with Michelle, my long time babysitter though elementary and middle school. “Mom, it happened again,” I said. I think all the color went out of her face at that point, and Michelle stepped in and said, “You’re going to the hospital whether I have to drag you kicking and screaming or not.” While still reluctant, I went with it. We stopped by Shrap Metal to get retainers for my piercings at the time (I mean who want’s lightning rods in their body if you code?). Off to the hospital we went.

Upon arrival at the hospital, I was taken into triage. The nurse put on a pulseox and took my blood pressure. While my blood pressure was normal, my oxygen saturations were low, but more importantly my pulse was through the roof. She thought the machine was broken… she tried the other hand… same result… she took it by hand… same result. Next thing I know I was being whisked to the cardiac area of the emergency room. There was a slew of doctors and nurses around me. All I can recall is an echo and chest x-ray at the time. I still didn’t want to stay, and I told the doctor the only way he was keeping me was if I had a hot nurse. Of course, the doctor delivered and my ICU nurse was gorgeous.

The next week was pretty intense, I think I had every test known to man run on me including the infamous right heart catheterization. The pulmonologist and cardiologist taking care of my case came in and said, “We are pretty sure you have pulmonary hypertension, but we’re not 100% sure. We need to send you up to Denver where they have pulmonary hypertension specialists to evaluate you further.” On my birthday, October 18^th, 2002 I was transferred to St. Joseph’s Hospital in Denver, Colorado. Dr.’s Lang and Kenard wasted no time and completed the work up for pulmonary hypertension. After reviewing everything Dr. Lang came in and said, “Sean you have Pulmonary Hypertension… right now there are two medications, Flolan and Tracleer. Tracleer is new and with as advanced as your case is you probably won’t get any benefit out of it before the inevitable. Flolan is the Gold standard and would probably be your best bet. If you don’t do any treatment, you’re looking at maybe 2 years.”

Yeah, let’s just say my 19^th birthday present from a doctor was what seemed like a death sentence. Fortunately, St. Joe’s was a teaching hospital. Every floor had tons of laptops. I was scared, but very compliant so the nurse brought me in a laptop. I spent most of the night researching PH on my own. Mind you, in 2002 there weren’t tons of resources that were easily accessible. After spending the rest of the night soul searching and trying to decide what I wanted to do I fell asleep. My mom arrived back at the hospital early that morning, and the doctor stopped in. I told Dr. Lang know that I’d go with the Flolan, after all, who really wants to die at 21—and that’s what he pretty much gave me. I was slated to have a central line put in and the rest is history.

After getting back to California about two weeks after this whole ordeal took place I met with my current pulmonologist. He told me at that point I wasn’t likely ever going to work or go to school. The same sentiment was resonated by the PH specialist I saw in Los Angeles. However, as I began increasing on the Flolan I began feeling better. My current pulmonologist never mentioned the work or school thing again. I told him I was going to go back to school and he supported me. Now I am a second year Medical Student at Western University of Health Sciences College of Osteopathic Medicine of the Pacific in Pomona, California. I’ve worked, I’ve loved, and I’ve lost but I couldn’t be more blessed.

The Pulmonary Hypertension Association contacted me in early 2009 about things they could do to make PHA better for young adults. In December of 2009, I was asked to join the Young Adult Advisory Board in which Generation Hope arose with special thanks to Colleen B., Britt R., Lindsay N. and myself. Shortly after that, I was asked to become a PHA PH Patient Mentor. In 2012, while getting my Masters of Science in Medical Sciences, I got a wild idea to come up with a cartoon series for children recently diagnosed with PH and so Lips Painted Blue (www.lipspaintedblue.com) was born. Needless to say, PH has shown me everything that I can do.

Mind you, I still have bad days occasionally, especially when modifying medications, life couldn’t be better. I will take the first part of my boards this summer and then finally head out to rotations to do good with actual patients. I will be able to take my experiences as a patient and relate to other patients to ensure they get compassionate and comprehensive care. My journey with PH may have begun back in 2002, but I look at each day as a new beginning. Every day gives me the opportunity to learn something new about myself. I couldn’t love life any more than I do, and continue to preserver. The good will always outweigh the bad, and the resources that are available for individuals are limitless. Through opportunities like the Tom Lantos Innovations in Community Service Award from PHA, if a resource doesn’t exist you can let your creative juices flow and create it.

My final remarks are something that I still believe to this day. Even though you have PH, it doesn’t have you. You should never give up, never surrender and most definitely live your life to the fullest. If you have any questions you can feel free to contact me at sean.wyman@gmail.com

PHighter Friday: Maho

I guess my story starts in 2013. About May, I start noticing that I struggle going up stairs and hills. This gets progressively worse as time goes on. That year, I was doing my Masters degree, and had a place to do a PhD in microbiology once I finished it.

It all goes well in terms of getting started with the PhD, although I do notice that I’m struggling to keep up with people going up. However, I just put this down to a lack of fitness, which in hindsight was rather stupid - especially when a friend had said something’s not right!

In Nov., I finally go to my GP, who arranges an echo - 6^th Dec. There, I am told that the pressure in my lungs are high. I’m asked “Are you feeling ok?”, to which I reply “Yes”. This is another stupid moments in hindsight, as I knew something wasn’t right but I was not worse that day than I was around that time.

10^th Dec., I’m due at my Masters graduation. However, that morning, while getting ready, I lose control of my breathing. Call and ambulance, get taken to A&E. Having the information from the echo, they quickly realise that I probably have PH, and call the specialist down - I am really fortunate that the Royal Free has a satellite clinic with specialist doctors, nurses and a psychologist at my local hospital. Diagnosis and admission into intensive care followed, and I was started on epoprostenol and sildenafil. Two weeks later (Christmas eve!), I am transferred to the Royal Free to have a central line fitted so that I can continue the IV therapy at home.

With the teams and my mother’s support, I managed to slowly return to my PhD; I am lucky to have a supervisor who is very supportive. By Apr., I managed to return full-time, and I do think that if my supervisor hadn’t been as supportive as she is, I may not have been able to continue. Due to the line, I had to learn to use computer programmes to continue my research from another angle. In Nov. We completed a risk assessment so I have managed to go back to doing lab work, which is what I love. I’ve continued to improve, from being told that I should start the process for transplant assessment to being able to do most things. My mother is a therapist working with movements etc., called "eurythmy", and I believe this has helped me recover enourmously!

I still do have days where I feel frustrated with the whole thing, particularly the IV! I have had moments where I feel so stupid for not seeking help sooner. But I realise that I’m responding well to the treatment, and that even if I had sought help I may still be in the same position today; I have had excellent support from the psychologist, who has helped me realise that, helped me to organise all my emotions and so much more. I also recently fainted due to pushing myself too much around that time, which was a huge knock to my confidence as I felt that I was back to normal. Reality is that I’m ill, even if I don’t feel it sometimes.

One thing that will stay with me forever; the day I was discharged from the Royal Free, the nurse looking after me said “Be bold; if you want something to happen, ask God, because he decides what happens, not us.”. This stills means a lot for me to this day, and gives me hope that one day I will get well enough to not need the IV anymore.

PHighter Friday: Bernadette

Hello! My name is Bernadette and I am a PHighter from San Francisco, CA. I am an identical twin. We are both lupus patients. Our diagnosis occurred November 2004. Same health condition, but very different symptoms. I experience fatigue on a daily basis, swollen joints, Raynaud's, thinning hair, and photosensitivity. I found out last year that I also have Sjogren's, dry eyes and mouth. My biggest battle is pulmonary hypertension.

I can remember when I was about 18 years old. I started to feel dizzy. Back then, I thought I was just stressed out since I was in school full-time and lacking sleep every week. So I ignored it and didn't think much of it. A year or so later, the dizziness began to intensify, my heart was beating at a faster pace, and I found myself breathless after climbing up stairs to get to class. I went to the ER a couple of times too. ER doctors kept telling me I was fine and that it was all stress related. I wanted to believe that I was okay.

Fast forward to 2007 when I was 20 years old. I decided to take a shower one night. Little did I know, this would be the a-ha moment. I showered for a good 20 minutes or so and the water was pretty hot. I started to feel really lightheaded. That never happened before. I had to turn off the water and step out. I called my rheumatologist right away to let her know what had happened. She ordered an EKG, a stress test, and an echocardiogram immediately. She was onto something. I was getting worried. I was a teenager and I was so confused about the state of my health. The EKG and stress test came back normal. The echocardiogram did not. I was told I had an abnormal lung and that more tests needed to be done. I was scheduled for a right heart catheterization in October. I was pretty anxious before the procedure. I was new to this. I was scared too. Thankfully, my mom was there to support me. I remember lying down for a good six hours (they went into the groin area) and I couldn't move. I can also remember the nurse telling me to go on a low-sodium diet.

A few days after the procedure my diagnosis was confirmed: pulmonary hypertension. October 11, 2007 to be exact. My pressures were elevated, can't remember the exact figures. I knew what hypertension was, but what did it have to do with my lungs? I had to meet with a pulmonologist ASAP. I was still very terrified. What did this mean? I thought a lot about the future. Doing my own research didn't help, the statistics scared me. How long would I live? The pulmonologist was reassuring. There is no cure for PH, but it can be treated. My mom was devastated when she found out I couldn't bear children. It's still something I think about to this day. I know I have options, such as adoption. I remain hopeful. Anyway, the doctor prescribed Revatio, my first PH treatment. I had to be positive. My journey isn't a walk in the park. I was in community college during this time. My goal was to transfer out in two years, but that eventually became 4.5 years. I had to become a part-time student and slow down.

I've had my share of losing health insurance at 21, dealing with the cost of medication(s), and trying to find the best care possible. 2008-2010 was so hard. I hit rock bottom. I eventually qualified for health insurance after a long wait and quickly decided to be seen at UCSF. My sister was already being taken care of there, I wanted the same for myself. I adore my lupus and PH team. :) They really listen and have always encouraged me to do my best. Thank you, UCSF!

I transferred to UC Davis, Fall 2010. It was so rewarding! :D I was ecstatic!!! Adjusting to the university wasn't so easy. I was 75 miles away from home. Davis is a small college town. I had to make new friends and everything was much more challenging compared to my community college load. Each quarter was 10 weeks long. I was definitely missing my 18 week semester schedule. During my first quarter, I felt alone. It was a silent struggle, no one knew my story. I was quite fatigued. I had to set a time for napping, even in between classes. Things eventually got better. I made a lot of new friends and became an advocate for the Asian American community on campus. The last two years of college was a dark time for me. I had to switch medications at the start of 2012. Letairis and Adcirca were my BFFs. My maternal grandmother passed away in October 2011 and my grandfather in December 2012. I didn't know how to cope because they were so important in my life. They were my role models and supported me when I first transferred to UC Davis. Education meant the world to them. I kept my word and I always told them I would finish.

My last quarter of undergrad, I was enrolled in an autobiographical course. I shared my story about health, family, and my resilience. I was exposing myself to my peers and friends. I was nervous prior to starting my piece, but it was rewarding because everyone was supportive. I graduated in June 2013 with a BA in Communication and a minor in Asian American Studies. It was a very emotional time for me and my family. I finally had a degree!!! :) I'm taking an academic break for now, but I haven't closed the door on pursuing higher education.

It's been six years, going on seven since my diagnosis. Currently, I haven't been feeling great. My six minute walk test a few weeks ago didn't go so well. I can tell that my medication needs to be adjusted. My PH team wants to start Tyvaso and hopefully that'll improve my condition. A right heart cath also needs to be done. I'm hoping to start walking at a faster pace and biking. Running only seems like a dream right now, but I'm hoping to do it again. Slow and steady. 

My PH journey has been a roller coaster, but I'm still here. At times, I'm fearful yet I block the negativity and opt for optimism. It all starts with yourself. I've learned to listen to myself. Sometimes, one has to decline an invitation for fun. Learning to say no is important! Getting enough sleep does wonders for me, even if insomnia creeps up once in a while. Taking my medications regularly is a MUST! I can remember a time when I didn't listen to my healthcare providers and they lectured me good. Always surround yourself with positive people. Their energy is contagious. Have faith! Many people pray for me and I pray for myself. I believe the big man upstairs is listening. My siblings mean the world to me, they are my heart and soul. I love you, Christian, Bianca, and Loretta! <3 Our dogs too, Laki and Coco. Journaling and blogging helps me cope. It's always good to vent. And take up as many hobbies! I love sports, Go Niners, Giants, and Warriors, photography, and traveling. I hope to see the world soon. But for now, domestic travel will do. And I haven't given PH support groups a chance yet, but I'm hoping to very soon. I'm a PHighter! Can't stop, won't stop.

You can find me on Instagram (@heartbern)! I post a few times out of the week. :D

Love to you all!

Bernadette

"Don't give up, don't ever give up!" - Jimmy Valvano