PHighter Friday: Adam Kingz

Adam with Mary McCarthy,
Clinical Nurse Specialist

Hello, my name is Adam Kingz. Here's a little back story on my life so far. I was diagnosed with Primary Pulmonary Hypertension when I was about 13 years old. The doctors said they think I had it for about 2 years before finding out. The testing was long and doctors had no idea what it could have been. One of the main reasons I started going to the doctors was because I was passing out in gym class all the time.

The day I was diagnosed I was sent to sick kids hospital in Toronto. I pretty much lived in the hospital after that. It was hard being 12 and having PH. As my friends played I sat. They continued in school and even that was to much for me. I was in a wheel chair and on oxygen. The oxygen was a pain to have with me, plus being stuck to the wall sucked. Then they started me on flowlan. I was the first child in Ontario on it. So it was a little nerve raking. The fact that it had to stay cold and be changed daily was quite taxing on my family. I also developed an allergy to all tapes so they could only use gauze on me.

My health continued to decline and I was able to do less and less. I got the call for my transplant August 23. I was now 13. It was 3:00 in the morning and I was whisked away to sick kids. (One of the few times I was home. Of course). After my surgery things became amazing! I could breath, run, play! It was truly amazing! My life was no longer on pause. It aloud me to grow up! I got to meet my beautiful wife and become a father to her daughter. I was only taking anti rejection medication and that wasn't to bad. Besides the fat face from prednisone.

After 13 amazing years I developed a cough. After a few tests the doctors found out that I had chronic rejection. This was heart breaking and terrifying! I was so happy and it was all going to disappear right through my fingers. But then the doctor gave me a glimmer of hope. I was told they do re-transplants. It was scary but it was something. I could keep my family, my life wasn't over. Shortly after my now wife and I decided to try and have a child. I was already a father to a little girl that may have not been mine from blood but she was and is a huge light in my life. So why stop living? We were blessed with a son!!! All though out my wife's pregnancy I got worse. Everyday it was getting harder and harder to breath. When I saw him I forgot about it all. He was perfect. And just one more reason I had to survive!

My wife and I also got married in this time. To see how beautiful she was walking down the isle was incredible! She truly is my other half. My health was getting incredibly bad. Well you wait for your transplant you have to do phsyo. It's to keep you as strong as possible. That way you recover fast after transplant. It's just some light weights, stretching and walking on a treadmill. Well by the end I was barely doing 5 minutes on the treadmill. I could barley walk up 2 or 3 steps. I used a walker and refused a wheelchair. I never wanted to go back in one again. My breathing was so bad I was burning so many calories I was down to 105lbs. That's coming from about 210lbs. Every breath I took reminded me of having PH again. It hurt so bad. Every minute of every day it hurt. After 1 false call the day finally came. I got my lungs! 12 days in the hospital and I got to go home. I pushed hard and recovered fast! Now as I sit here healthy and being able to breath once again I will never forget how lucky I am. I love my life! I am extremely thankful to both my donors. Organ donation is incredible! I get to be a dad, a husband, son and friend.

The 'S' Word

What comes to mind when you think of the 'S' word? Is it a four letter word, or is it an eight letter word? The word I am referring to isn't a bad word (although it felt like one for a while.) It felt like word I wasn't allowed to use. I thought this word was off limits for me because I haven't "beaten" Pulmonary Hypertension, or because I haven't lived with the disease for over seven years.

The word I am talking about is survivor.

People who have lived with Pulmonary Hypertension for over seven years are considered a 'long-term survivor.' For those of you not living with PH, I can't even begin to explain how daunting it is to know that if I make it to my 33rd birthday I will be considered a 'long-term survivor.' For those of you who have PH, you already know how this pit in your stomach feels. I have only ever seen the word 'survivor' attached to the phrase 'long-term' when referring to PH. As I have mentioned before, there are not any treatments available that provide a chance of remission or a cure for PH.

When I was diagnosed the specialists came into the room and slapped an expiration date on me. He said I have " about 5 to 10 years." I asked "5 to 10 years for what?" Dying clearly wasn't on my mind. Sure, I Googled the disease before I went to my appointment, but me? Fatal disease? Part of me thought that couldn't possibly happen to me. But I guess it did happen to me, and it is happening to me. Most of us do not get the chance to beat the disease, and are therefore not often considered a 'survivor' unless we beat that crummy expiration date that doctors try to pin on us.

My question is why not? Why are we  not considered survivors the day we are diagnosed?

How do I go from a doctor's appointment where they discuss putting me on the transplant list as 'insurance,' and try to maintain a relatively normal social life? What do I have in common with my peers? Suddenly we are forced to find the fine line between living and dying, and balance it in a modern world. Pay your bills. Take your pills. Don't have an emotional breakdown in public. (Although, it is totally okay to cry in public. I have seen my fair share of people cry at night clubs before I got sick, and it was mostly over guys and french fries.)

How do you love something when you feel like it betrayed you? For me, it became incredibly hard to love myself after diagnosis. After diagnosis we have to try and learn to live with ourselves (and our diagnosis) the best we can. Suddenly our bodies are different and we rely on medication. The most effective medications have horrible side effects, are quite visible, and require that the medication is administrated 24 hours a day, everyday. You also never get a break from the equipment, or a vacation from being sick. Some of us also require supplementary oxygen, which comes with its own separate handful of problems. (Like "do I have enough oxygen to go shopping with my friends? What happens if the power goes out?") Suddenly our bodies are different, along with our lives and what we thought would be our future. I remember feeling as if I could physically feel my body betraying me when I first diagnosed. Worse than that, I felt like everyone could see my body crumbling away. It was hard to love myself, or believe that anyone else could love me. I felt invaluable because my body, for whatever reason, decided to self destruct. After diagnosis, I feel like many of us question our self worth and face self-esteem issues.

We have to try learn to accept, and hopefully love our bodies, despite all the things we might require to stay alive. I learned that I could not love others if I did not love myself. (I know how cliche that sounds, but there is a reason so many people offer this advice.) While I still struggle with trying to accept all the changes in my life, I am also less hard on myself. Superficial things don't hold much merit anymore. Sometimes you just have to accept things for the way they are. That way you can move on and really enjoy what is happening in front of you in this very moment. My boyfriend told me a few months ago that I wasn't affectionate anymore. Truth is, I hadn't been affectionate since after my diagnosis. I was scared he could feel my body betraying me when we hugged. Could he see the expiration date stamped on my body? I also had a hard time really connecting to him. I was tuned out a lot. I was in my own little world full of fear and depression. I still have those days, but I try to focus on living in the moment. I was so closed off, my boyfriend wasn't sure I loved him anymore. I realized that I had shut him out because I was so scared of him leaving me because of my diagnosis. I felt so unlovable, and it was easier to shut him out so I couldn't get hurt in case he decided he couldn't be with me anymore. I learned that it wasn't my diagnosis that was pushing him away, it was me.

Not only have I battled physical obstacles since diagnosis, but emotional. I know that I am not the same person anymore, and I doubt anyone who goes through this experience could be. In fact, I think the core people in my life have changed as a result of my diagnosis as well. They say death changes you. Well, what do you think happens when you get an invitation to the Grim Reaper's party instead of the standard surprise party? Obviously you have time to think about a party that you weren't really planning to attend yet (or even prepared to go to.) This is what I mean about the fine line between living and dying. We are constantly trying to balance both, and still be functional. "Did I leave the stove on? I need to pick up dog food. Should I make a living will?" The last thought shouldn't be something I have to worry about, but it is.

When I was first diagnosed I noticed how easy it was to stay in bed, not change out of my pajamas, and make excuses not to do things with the people that I love. It was easier to stay in bed, be alone and wallow with my thoughts. Once I started to stabilize I was still avoiding doing things that I would genuinely
enjoy. I had this idea in my head that I had to wait for things better. By better, I didn't just mean my health stabilizing. I meant I was waiting for some kind of miracle to make the PH go away. I felt like I couldn't enjoy life unless I was perfectly healthy. I have started to accept my health for what it is (although it is challenging.) When I was diagnosed I was very sick. I was diagnosed somewhere between a stage 3 and stage 4. There is no stage 5. As you can imagine I was in rough shape. I went to bed each night terrified I would die in my sleep because of how sick I was. My heart was severely enlarged. Even with oxygen walking a foot to the bathroom was a major challenge. Because I was so sick, I am starting to really appreciate how far I have come. It isn't perfect, and of course I wish I could be better, but where I am now is so much better than where I was when I was first diagnosed and I am fortunate it for that. I've slowly started to realize that I am doing okay, and that there is no better time than now to start living. I am not sure what my health will be like in the future, so I can't waste anymore time waiting for things to get better before I start living again.

This might sound a little strange, but I don't identify with the colour periwinkle or zebras (things affiliated with PH awareness.) I consider myself more of a unicorn, and I like the colour seafoam. I also don't identify with the word 'patient.' I have had to correct people from referring to me as one because my name is Serena and I am so much more than my diagnosis. (Unless I am in the hospital, I am not a patient.) It took me a while to come to terms with the word 'survivor,' and perhaps you don't feel comfortable referring to yourself as one. Through this experience I have come to realize that we are constantly learning in life, regardless of conditions. After my diagnosis I had to do a lot of re-learning. I am re-learning to live again. I am learning how to live a different life. The lessons that I have learned are things that can not be taught, but only gained through experiences (which are sometimes very painful.) What I have learned is that if you can continue to live, learn and love despite your diagnosis, which could very easily make a person hard, you are a survivor. Even if the word survivor is not a word that you are comfortable with, please do not deny yourself the love and recognition that you deserve. If you continue to live, love and even laugh despite everything; you are at the very least a bad ass.

PHighter Friday: Carmel

Just an average pre-dawn trip to the ER

When it comes to Pulmonary Hypertension, I am the boogie man.  I am literally living the life that everyone is afraid of.  Think PH diagnosis prior to the new medications that came out in the 1990’s, the medications “that work,” as they are so often called.  To put it bluntly, when all of us were told at diagnosis not to google PH because of all of the horror stories you would find on the internet, they were essentially telling you to avoid people like me. 

However, I believe that my story is worth telling.  I have developed a way of living with my disease (and that’s with my disease, not in spite of my disease) that allows me to have a completely satisfying, present-moment oriented life without regret, remorse, or wishing things were different.

I was surprised diagnosed with PH January 8^th 2014.  After about six months of increasing difficulty breathing, I finally went in to see a pulmonologist when I could no longer walk the six blocks to my regular bus stop without having to stop multiple times to steady my breathing.  Because my symptoms were so severe at my first appointment, I was quickly scheduled for a series of escalating tests culminating in a lung biopsy.  The lung biopsy confirmed the PH, as well as a secondary lung disease thought to be completely independent from my PH.  I woke up from the surgery on oxygen and have been on oxygen 24/7 ever since then.  My first right heart cath confirmed what my echo had estimated, that my pressures were in the 100’s and that my heart was significantly enlarged from all of the extra effort it has to exert.  I was promptly started on Sildenafil and daily diuretics, and when that didn’t work they increased my diuretics and added Letaris, and when that didn’t work they increased my diuretics and added inhaled Tyvaso, and when that didn’t work they increased my diuretics and switched me from Tyvaso to Sub Q Remodulin, and when that landed me in a three week ICU stay in which I was given a 0% chance of surviving, they increased my diuretics and switched me from Sub Q Remodulin to IV Veletri (epoprostinil).  Since being switched to IV Veletri this past January, I have survived one serious line infection, a blood clot, multiple septic emboli in my lungs, and a six hour hemorrhaging episode after my new line was placed.  I have spent a total of 35 days in the ICU, my walking radius has decreased to within the confines of my studio apartment, and I am currently on 10-15 liters per minute of supplemental oxygen.

I am also having the highest quality of life that I have ever experienced.

  

Many years before my diagnosis I began learning about and practicing Buddhist mindfulness.  Since I had been raised Jewish this was not much of a stretch.  There are countless numbers of us “Jew-Bu’s” walking around!  In a journal entry from 2009 I wrote to myself “When I look in the mirror I can either believe ‘my hair is brown,’ or I can believe ‘I’m having a thought that my hair is brown’.”  Both thoughts are true, but how will thinking one versus the other impact me in my daily life?  Let’s say that my mind automatically goes to the thought “my hair is brown.” What if I don’t want to have brown hair?  What if I prefer red?  In fact, my grandmother had red hair.  Why should I have been born with brown hair?  It’s not fair!  I should be able to change my hair color, maybe I should get some dye.  Of course, my hair being so dark I would have to bleach it first.  Again, not fair!  Other people don’t have to do that so why should I?

As you can see, suddenly from the thought “I have brown hair,” I have created a story about the value of having brown hair, and then I began emotionally reacting to my story .  The negative feelings I experienced were not actually caused by having brown hair, but because of the meaning I had invented and then assigned to it.  Suddenly, I am lost in suffering.  However, when instead I have the thought “I’m having a thought that I have brown hair,” I can instead notice the natural human instinct to want to categorize and label, and I can lovingly allow those thoughts to disperse naturally, like leaves being carried away in a river current.  In fact, because I am not caught in a self-perpetuated story that things should be different, I am free to enjoy what actually is. For example, the naturally occurring red highlights that do appear in my hair when the sunlight hits it just right.

My wife and I at our wedding reception

To me being terminally ill is like this.  I get to have a very different quality of life when I separate out the story which I attach to a thought from the actual thought itself.  It’s not fair, this shouldn’t be happening to me, and nobody understands are all examples of thought patterns that create their own suffering in my life.  If instead I’m able to think “I’ m having a thought that this isn’t fair,” I am more likely to be able to approach myself with loving kindness.  I can use that thought as a reminder to take extra good care of myself in that moment through reaching out to a friend, taking a bubble bath, or putting on my favorite fleece pajama pants.  And because I am staying fully in the present moment and not spiraling out in self created story, I am fully present to notice, receive, and be soothed by the self-nurturing that I am providing to myself. 

I have long subscribed to the alterna-healing world, and I have continued to use many complimentary forms of healing alongside my traditional allopathic PH care.  Among my regular tool kit I have used the anti-inflammation diet, a brief foray into juicing medical grade marijuana (legal in my state), hand making medicinal bone broths and eating traditional organ meats, learning to both give and receive Reiki, five element acupuncture, chiropractic care, yoga nidra, prayer, meditation, guided imagery, and specialized breathing exercises.   I believe in the alterna-care world very much, but here is another place where I have to be very careful not to create story (and therefore suffering).  I receive acupuncture, for example, because I like the relationship with my body that it helps to foster and I have also noticed that many times it can alter my experience of my symptoms.  However, if I start to become attached to the thought that acupuncture should cure me, I block myself off from the healing that is available to me, and is happening on a daily basis.

I mentioned earlier that I am currently having the highest quality of life I have ever experienced.  And I mean it, literally.  This last January, as I lay in my ICU bed in heart failure and unable to move, talk coherently, or care for any of my basic needs independently, the people that I had known and loved throughout my life dropped everything to take up residency in my hospital room.  Friends and family, and sometimes even near strangers, literally put their lives on hold to make sure that I was never alone.    My best-friend-since-the-sixth-grade even private chartered a plane with her husband to come out to visit me.  For three weeks, people sang me songs, massaged my aching body, slept in the hospital bed with me, and told me over and over again what it had meant to them to have me in their lives.  We said our goodbye’s, but with so little time left and the perception of nothing to lose, we metaphorically stripped down bare and truly got to show our souls to each other.  The joy of life was palpable to all during this time, and pure unencumbered love was the only language that anyone spoke.  Suddenly, it became clear to everyone present what it truly means to be alive (hint: it has nothing to do with if you can work, how much money you have, or what your body looks like).  My sisters decorated the ICU walls with colorful and beautiful artwork for me to look at.  We kept a mini fridge in my room filled with delectable taste sensations for when I could eat.  A good friend rented a button making machine and hand-made buttons for visitors and medical staff alike celebrating my life.  I hosted and judged a dance competition between my sisters, a close friend, and medical staff.  Although I was dying I was also, for the first time in my life, fully alive.  Far from feeling burdened, the close friends and family who walked this path with me were also woken up to the beauty and splendor of life.  Many of them feel permanently altered for the better from that experience.

Wedding day!

Truth be told, I started dating the woman who would become my wife during that ICU stay, proving to myself once and for all that my self created story (no one will ever love me, I am a burden on others, who will want me now), is nothing more than self created story which only serves to create needless suffering.  The night we confessed our love to each other we both thought was going to be my last night on earth.   Turns out we were wrong.  In what could only be described as a Disney princess fairy-tale story come to real life, I was literally saved by true love’s kiss.  Which is to say, the very morning after we confessed our love, with no medical explanation at all, I suddenly reversed course, came out of heart failure and could sit up and walk again.  My wife and I are madly in love with each other, and I have been sick with PH the entire time that she has known me.  Having lost her own father to lung disease nine years ago, she knew fully well what she was signing up for.  She does not feel that she is missing out on anything because I am sick, and I know with absolute confidence that no one else on this earth could do a better job of loving her than I do.  Our joy at being together fills every room we enter.  In the hospital the nursing staff has nicknamed us “the love birds” because every time that I am hospitalized, and I am hospitalized quite a bit, she spends each night sleeping in the narrow hospital bed cuddled alongside me.  She loves me enough to tell me that if it ever becomes too hard to keep on going, she will understand if I need to leave my physical body.  And she loves me enough to support me through the grotesquely rigorous and often unpleasant lung transplant process I am currently engaged in.

Two books have helped me considerably on my journey towards peace and freedom with my illness, and I would recommend them without reservation to anyone who is either sick or knows someone who is sick.  The first is called How To Be Sick: A Buddhist-inspired guide for the chronically ill and their caregivers, written by Toni Bernhard.  And the second book is simply titled Fear, written by Zen Buddhist monk Thich Nhat Hanh.  Both books have helped me shift my thoughts so that I when things are hard, as they often are, I experience the necessary and expected pain of being a human being who is mortal, but not the suffering caused by own self created story.

I hope that my orientation towards my disease can be helpful to all of us in the PH family, whether you have six months or twenty years to live.  Whether the new drugs “work” for you, or they do not.  Whether you are working a full time job, or just working on being able to get out of bed in the morning.  Regardless of your circumstance, there is an equal amount of peace and freedom to be found for each of us.

Carmel is currently raising money for her lung transplant. Please visit her fundraising page here to learn more on how to help, donate or share her fundraising page.

PHighter Friday: Mariza

Hello there guys!  My name is Mariza and I am 34 years old. I was diagnosed with CTEPH (Chronic Thromboembolic Pulmonary Hypertension) about a year and a half ago. I cannot quite pinpoint when my symptoms really started because I had trouble with breathing since high school. I was told I had allergy induced asthma and had an inhaler for when the asthma acted up. I had bronchitis more times than I can remember but my symptoms seemed to worsen about 2.5 years ago. I remember I was sick with a cold and coughing a lot and noticed I was having a lot of trouble breathing when my husband and I went to a park and just walking was tough.  I went to the doctors and was told it was my asthma and I most likely had a sinus infection that had cleared up on its own. So I continued taking my inhaler and my symptoms seemed to get better. I started running and working out, lost about 40 pounds and felt great.  Fast forward to Christmas 2 years ago. I was in North Carolina in the mountains with my family and husband and we went for a hike and I was having a lot of trouble with the smallest hills. I chalked it up to the altitude and my asthma acting up again.  But my symptoms didn’t seem to get better this time.   I found myself trying to find the closest parking spots, knowing that just the walk from my car to the store would be difficult. I let it go because I really believed I would feel better eventually. I had a bad cough from January until May of 2014. You would think I would have gone to the doctor but was seriously convinced I had a really bad asthma flare up.

I am a nanny and my job requires a lot of energy all day every day.  I would be at work and it would be really hard to do anything.  I would walk up the stairs and need to sit down immediately so I wouldn’t pass out, I would basically spend the day sitting and making excuses to not chase the kids around. I honestly don’t even know how I got through it and I don’t know how I managed to not pass out. When I got home I would sit down immediately and remain in that position for the rest of the night. Needless to say, I gained that weight back pretty quickly. It all came to a head when a couple of other nannies and I decided to take the kids to the Philadelphia zoo for the day. We parked at the zoo lot which is about a 5 minute walk to the entrance of the zoo; no hills. It was absolutely horrible. I had to stop a couple of times on the way in to catch my breath and it hurt so bad to even take a breath. I was gasping for air with every step I took the entire day. It was so bad I told the other nannies that I thought something was wrong. One of them said you might   have walking pneumonia and she told me her father had just gotten over that and he had the same symptoms. I told my husband and he said I had to go to the doctor. So I made a decision the next day to go to the urgent care after work. 

When I got there they took my blood pressure, weight and placed the pulse ox on my finger. The tech who was doing all of this kind of gasped and asked me if I was wearing thick nail polish and I told him
was just wearing regular nail polish.  So he said let me do this again. And I looked at the monitor and my oxygen level read at 78%  I asked him if that was bad. He said well you should be at 98-100% and he walked me over to the room and called the doctor to come in immediately as they put oxygen to my face. They also took an xray of my chest. I sat there for a while until my oxygen went up to 90% and said I need to go to the ER right away and they would call an ambulance. I told them no that I would have my husband come get me. I was terrified. Once I got to the ER I was pumped full of oxygen but it was so unstable that the doctors were seriously concerned. They thought for sure I had a pulmonary embolism and did all sorts of imaging and blood work which confirmed there were clots in my pulmonary arteries and I had pneumonia.  So I was in the ICU for several days and then moved a step down to progressive care after a couple days but I was still attached to oxygen. I was sent home after about 10 days in the hospital but was still on oxygen and if I wasn’t moving and not on oxygen my O2 levels would pretty much be at 92%. My mom came up from Mississippi to help and be with me so my husband could return to work. On my ninth night home I was laying down and my dog was laying next to me very concerned and wouldn’t leave my side. I was still coughing but this time I coughed up a lot of blood and then I took my o2 levels and they were in the low 80’s while on oxygen. I told my mom and husband and I said I think I might be getting another PE. So they said lets go to the ER and as we were walking to the car I was so close to passing out they had to catch me. We go to the ER and had the same tests done and back to the ICU I went. After a few days in progressive care and no improvement the doctor came to tell me that I was being transferred to Lehigh Valley Hospital where I would most likely be getting a lung biopsy done because they couldn’t figure out what was wrong with me and they didn’t have the resources to do any further testing at my local hospital. It was at Lehigh where the wonderful ICU docs figured out what was wrong with me. They told me I had Chronic Thrombo Embolic Pulmonary Hypertension and that the clots that are in my lungs had been there for so long that they had calcified and my heart had been working so hard to get oxygen around that my right heart had enlarged tremendously.  They told me I was really lucky because there was a surgery that could cure this and I might be a candidate but that I would have to go to UCSD or  Temple University Hospital for it which is in Philadelphia. So the obvious choice was for me to go to Temple. Because I was so unstable I was sent there via ambulance and kept in their progressive care there for about a week where they put me through a variety of tests.  I had an amazing doctor, Dr. Paul Forfia, come and talk to me and he told me I was a great candidate for the surgery and I would have it the next day.  When it came time to sign all the necessary papers, the resident who came to tell me about the surgery came right out and said exactly what the procedure entailed and the risk factor.  I had no idea the surgery was an open heart surgery and all the craziness that went along with Pulmonary Thrombo Endarderectomy.  I freaked out and could not stop hyperventilating. I said I needed a minute to think about all of this. Dr. Forfia came in and agreed that I needed time to process everything and it would be good for me to go home and gain strength before the surgery. So that’s what I did and I am so glad I did.  I left the hospital at the end of June and scheduled my surgery for September 22^nd, 2014. I had three months to research my amazing surgeon Dr. Yoshiya Toyoda, spend time with my family and friends and mentally and physically prepare myself for the biggest day of my life. I had that surgery and despite one set back when fluid filled my lungs after leaving the ICU, I got through it. They removed the clots and cured me of my pulmonary hypertension. I was in the hospital for 9 days after surgery and left there with no oxygen and walking and able to breathe.  

My heart is back to normal size and really healthy. I have a new outlook in life and consider this as my second life. I just recently had my first birthday and I feel amazing. The asthma I had been told I had, never really existed and I can take a deep breath like never before. I exercise at least 5 times a week, like really really workout. I lost those 40 pounds (20 of it after the surgery from not eating and being bed ridden) but the other 20 just from exercising and eating right. I am still working on being at my healthiest. I owe my life to the doctors at Lehigh Valley Hospital and my amazing doctors Dr. Paul Forfia and his NP Fran Rogers and my surgeon Dr. Yoshiya Toyoda at Temple. Not only do they dedicate their life to caring for patients with pulmonary hypertension but they cure those who are able to get this incredible surgery. 

This past Saturday I had a major milestone in my post-surgery life. My husband and I did the O2 Breathe walk to find a cure for Pulmonary Hypertension…at the Philadelphia Zoo. I cried when I spent the entire day there walking and able to enjoy the experience, I cried because of the guilt I felt since I am cured, I cried for the people that have lost their lives to this disease and I cried tears of joy because I know that this community will one day find a cure as long as we keep coming together, spreading the word and sharing our stories so people can become more familiar with this “invisible disease”. 

PHighter Friday: Rebecca

My health journey started a long time ago. 25 years ago, to be exact. I was three years old, and diagnosed with Stage 4 Embryonal Rhabdomyosarcoma. To summarize: Tumor in my abdomen. 5% chance of survival. The treatments I endured have long ago been deemed "inhumane, and no longer practiced on humans." I received experimental amounts of radiation, and chemotherapy. The doctors told my parents to expect long term side effects of said treatments, but were unsure what they might be.

Some side effects were: intestinal issues, weak teeth, extreme fatigue, infertility, and joint problems. I've lived my life in and out of hospitals, and doctors offices. I've had to become very in-tune with how my body is functioning.

Fast forward to April, 2015. I developed a case of bronchitis that just wouldn't go away, no matter the amount of antibiotics I took, or rest I got. I noticed that my heart was beating hard all of the time, and I was breathless walking from my living room to the bathroom. I couldn't speak a full sentence without gasping for breath. After months of different doctors, and tests, including a right heart cath, a new diagnosis entered my life. June 5th, 2015: Idiopathic Pulmonary Hypertension. My doctors can only assume it's from the radiation I got as a child. At the time of diagnosis, I was told I was at Stage 3. I was put on Sildenafil, Opsumit, and blood thinners within two days of my diagnosis. I had to quit my job-I had been a nanny for 6 years-because I couldn't even walk up a flight of stairs, let alone chase after kids.

I felt my entire world crumble beneath me. The first few days after the diagnosis, however, I felt relief. I was almost blissful. After months of doctors telling me I was fine, there was nothing wrong, it was in my head-one even told me that I should see a psychologist-it started to mess with my mind. "Was I fine?" I thought? "Is this just how people feel all the time, and I'm being whiny?" So to receive a diagnosis: I was happy. I threw myself into learning about this disease, it's outcome, the medications, the stories. But eventually google stops giving you answers you didn't already know, and the dust settles. In the weeks since I've been diagnosed, I've experienced sadness, anger, guilt, frustration, and fear. Sometimes all on a daily basis.

These days, I try my best to not panic or worry about the future. I spend my days with my cat, and baking. I've had to learn to allow myself to not rush projects, or cupcakes. But to take my time, rest often, rely on the help that people want to give. I'm only a few months out of the diagnosis phase, so I wholeheartedly believe that my health can only go up from here, now that I have an amazing doctor, and medications. I use oxygen only at night now, instead of 24/7, like at first. 

I joke that I've been given a "lemon" of a body. I feel as though the insides of me are barely held together somedays. And there are days where I think, it's impossible. It's impossible for one person to fight so hard, to endure so much, to receive blow after blow. But usually after a good nap, and an even better cry, and a hug from the world's most amazing husband, I brush myself off, and tell myself that tomorrow is a new day.

Pulmonary Hypertension may have been a stumbling block for me this year, but it won't slow me down forever.

I can be followed on Instagram at rlidenberg, or on my blog: phancyfree.wordpress.com

A Pessimist’s Guide to being Optimistic

I have been a pessimist my entire life. Some of my earliest memories are of me worrying, mostly of problems that never came to fruition. I was always a “glass half empty” kind of person, both figuratively and literally.  This, by the way, drives my boyfriend Spencer insane. I always ask him to fill up my glass of water when it is half empty. Now he refuses to fill up my glass until it is completely empty, which in some weird way has taught me that a half empty glass of water is still half full. (I know this because I used to chug my half empty glass of water to get him to fill it up, which I do not recommend unless you like choking on water and frequent bathroom trips while trying to watch the Entourage movie.)

I am sure that being diagnosed with a disease like Pulmonary Hypertension is difficult for both the optimists and pessimists of the world. I say this because Pulmonary Hypertension is a pessimist’s disease. Pulmonary Hypertension is something that can turn an optimist into a pessimist, or allow a pessimist’s worries to thrive like a germ cell in a Petri dish. The statistics about PH are not good. Many of the people with PH that I have spoken to through this project have only had these statistics affirmed by their doctors. With PH we don’t get a 50% chance of remission with a certain kind of treatment. Once we are diagnosed, we are often told that it is all down hill from here. As you might know, this is one of the main reasons that I started The PHight or Flight Project. Statistics are flawed; statistics do not apply to everyone. Many people with PH are simply exceptional, regardless of where they fit into that pie chart.

When I was diagnosed, the statistics that I read about PH were not very optimistic. One of the first articles that I read stated that people with PH have three years to live, and will require a heart-lung-transplant (which also has terrible statistics!) I was a wreck. When I finally saw a PH specialist he told me I that had maybe 5 to 10 years to live. That was a lot better than 3 years to live, but at age 25, living another 5 to 10 years simply isn’t good enough. (Not so fun fact: I was 25 when I was diagnosed, I am now 27.) Maybe I am spoiled for feeling this way. I have been told I am a little spoiled… but I swear I just have good taste (this statement is only half true) and I just like nice things!

Being an optimist is good for your health, so if you haven’t already, it is time to start seeing your glass as being half full. Numerous studies have concluded that optimists live longer. These studies have also concluded that optimists heal quicker after surgery, survive longer with cancer, and heart patients live longer. Perhaps you don’t trust me because I admitted to being a reformed pessimist, and now you want to do your own research. If so, a lot of information is available for free with a simple Google search. (If you use Bing as your search engine, I don’t trust you.) 

Being an optimist is good for your health regardless of your current situation, whether you have PH or not.  A study performed the Harvard School of Public Heart Health has found that having a positive attitude, such as self acceptance, is linked to improved hearth health. This study concluded that people who are optimists had fewer heart problems. The University of  Pittsburgh found that optimists were more likely to live into old age, and were less likely to die from all causes than cynics. Research has also shown that optimists are less likely to get sick with a common cold. Their bodies are also more efficient at fighting off infection during times they feel optimist (opposed to times when they left less hopeful.) Studies have also found that cancer patients with positive attitudes tend to have better outcomes. In short, optimists expect the best to happen and reap the rewards for their positive thinking. (I am sorry, I am not sourcing any of these studies. I am not being graded.)

As I said before, PH is a pessimist’s disease. I understand that it can be hard not to feel like the world is against you when the chances of developing PH are so astronomically impossible. Statistically, you are more likely to die in an asteroid apocalypse. Oh…maybe I shouldn’t have said that. (Sorry pessimists, you’re probably safe from asteroids and zombies.) As someone who grew up as a chronically pessimistic person, I will admit that it is hard to change to way you think, but it isn’t impossible.  Look at all the benefits being  an optimist can provide. Becoming an optimist is free. It is also an oppurtnity that one cannot afford not to at least try.

A Pessimist's Tips for Becoming Optimistic

If you are still reading this, you might be slightly dubious of my tips because I have mentioned that I was a pessimist before. I wanted to highlight this because there is hope for everyone to become Optimist Prime...or just a regular optimistic person. Whichever you prefer.

1. Keep a Gratitude Journal

Research shows that grateful people experience less aches and pains, and report feeling better. Keeping a gratitude journal can also improve your long-term well being. It can also help improve your quality of sleep, and help decrease systolic blood pressure. This exercise in gratitude can also help improve relationships, and spirituality.

I recommend keeping a gratitude journal for at least a year. (However, you might find it so beneficial you may want to continue practicing it.) I know a year sounds like a big commitment, but chances are you can squeeze 5 minutes in each day to do this. What worked best for me was setting 5 minutes aside before bed to write what I was grateful for. I recommend trying to write three gratitudes everyday before bed. You don't have to write a full essay- just three small points. I did this for the first year following my diagnosis, which was my most challenging year thus far in life.

It was very challenging to find things to be thankful at first, but that is the idea of this exercise. This will encourage you to think more positively.  Not every gratitude has to be grand. On days where I struggled I was thankful for really simple things, like a good cup of tea.

2. Take Things 10 Seconds at a Time

Taking painful or difficult things 10 seconds at a time is a revolutionary idea that I learned from The Unbreakable Kimmy Schmidt. For those of you have never watched the The Unbreakable Kimmy Schmidt, the show focuses around a young lady who was kept in a bunker for 15 years with several other ladies after being kidnapped by a man who refers to himself as the 'prophet.' The show contains flashbacks which shows how Kimmy's spirit was unbreakable in the bunker, and the ways she coped to life in the bunker. 

In one scene, it is revealed that the ladies in the bunker had to take turns turning a crank in the bunker for 24/7 hours a days. Similar to a plot in Lost, they had no idea why they had to turn the crank, but were told horrible things would happen if they did not continue to turn the crank. The crank was large and quite hard to turn, especially for someone of Kimmy's small stature. To get herself through this process, she would tell herself that she could stand anything for 10 seconds at a time. "Then you just start another 10 seconds" Kimmy explains of continuing this routine. 

With PH, you will go through challenges and face hard circumstances. Remember to take things 10 seconds at a time. You can stand anything for 10 seconds at a time. 

If you haven't watched The Unbreakable Kimmy Schmidt yet, you can binge watch it on Netflix. It has everything you could want in a show. (Did I mention the show was co-created by Tina Fey?) Kimmy's unbreakable spirit is almost contagious. I watched the entire first season and didn't realize until after that this show wasn't just a comedy. This story was about a young girl who was kidnapped, and probably a victim of sexual abuse. It was a story about a survivor. Her unwavering hope that she would escape kept her alive. Her unbreakable spirit kept her optimistic. 

3. Visualize the Things You Want

When I was first diagnosed all that went through my head was the terrible things the doctor's told me would eventually happen. I remember the phrase "I am dying" running through my head for 24/7 for the first year after diagnosis. It was horrible. Why was I focusing all my attention on something that I didn't want to happen? Belief is power. I believed that I was dying, there was no way my body could get better. I had to stop my way of thinking. I had to let go of the negative thoughts, and try to find optimistic thoughts.

Remember, visualization is the idea that your mind can prepare your body for the changes you want to happen. If you take one thing away from this, I hope it is that you should not focus on the things you don't want to happen. Instead, focus on what you do want to happen. You can incorporate visualization into your meditation routine. You can also write down a mantra or a goal and keep it somewhere you look everyday, like on your desktop or tapped to the mirror where you get ready in the morning. Reading what you want to happen and repeating it will help you to visualize your optimistic thought. It will help you focus on what you really want to happen, not what you are afraid will happen.

This might be a little hocus-pocus-new-age for some, which I understand. Instead, try not to focus on what you don't want to happen. Focus on what you want to happen. Don't focus your thoughts on fear, or worry. That will not help you become an optimist, but trying to visualize or imagine things you want to happen will. If you don't feel comfortable visualizing your health, you could visualize small goals that you hope to complete. This could be imagining a scrapbook you want to finish to doing a new yoga move. A lot of athletes use visualization to prepare for the perfect hole in one or goal, so there is some proof out there showing the power of visualization, which is important for positive thinking.

4. It is Okay to be Sad

Being an optimist doesn't mean that you cannot be sad. Part of being an optimist is recognizing your feelings. You will get sad and have a bad day. This is normal, and a part of life for everyone.

I know that I have a wave of emotions after a PH check up. I usually feel depressed for a few days. I try to acknowledge my feelings, but do not judge myself for feeling the way I do. I understand that what I am going through is incredibly challenging and hard. It wouldn't be natural to try to force happiness in these situations. I also think that in order to move on, I must go through the wave of emotions that accompanies a challenging day.

However, when these emotions no longer serve a purpose I try my best to let go of them. This means I have to stop replaying what the doctor said in my head, (or something else bad or negative) in my head over and over again. When I replay something in my head (or tell the story of something bad happening) over again I am reliving that experience. I keep putting myself back in that dangerous situation, even if it is just mentally.

To try and deal with sadness, or difficult emotions, you can always try writing down what happened, and how it made you feel. Read it a day later and see if you have an insight. Maybe you will be able to give yourself advice. You can also try to discuss your feelings with a good friend or family member. Because I know that PH check ups are difficult for me, I set up a 'self-care' plan. I set aside a few special items for me to enjoy when I get home. This includes having my favorite bath bomb from Lush to get all of the hospital cooties off of me, and then enjoying a cupcake that I have froze from my last visit to Kelly's saved especially for this occasion.

Do you have any tips on staying optimistic- or any tips on how you became an optimist? Please feel free to share in the comments.

Disabled and Rejected from Disability

Throughout my diagnosis I have learned that there are stigmas surrounding those who are sick and disabled. These assumptions are mostly made by "healthy" people who have never ever been in this sort of situation. These judgements range from a mail carrier who questioned my mother and I for using a parking space designated for people with disabilities, to me being rejected from receiving disability from the provincial government. I've learned the hard way that people don't expect someone who is disabled, or sick, to wear the lipstick shade 'Hot Gossip' by Mac, or have a cat eye so strong it could steal your man. I think people want me to wear sweat pants- and not the cute sweat pants unviersity girls wear for yoga. The baggy ones that your dad wears from Costco.

Another thing that I have learned is that in order to apply for disability (despite having an often fatal disease that has left me disabled) is that you cannot have savings in your bank account.

Me in my pajamas in bed.
This is what people expect being sick/disabled to look like.

How I actually dress when I leave the house.
(On a good day of course. Did I mention I like Lana Dey Rey?)

About 3 months ago I had to resign from my job. I had returned 6 months after diagnosis (which in hindsight, was way too soon.) I returned to work for an almost a year, but found that I was physically no longer able to work. Unfortunately, my job was increasing my symptoms. It felt like I had the flu all of the time because of the extreme facial flushing I would develop from the stress. I would also have the chills and aches throughout my body. I felt like garbage all of the time. I felt too tired to do anything, too tired to enjoy life. I felt like I was living to work, and when you become aware of your own mortality- that is a very unpleasant feeling. I knew that this day would come, so I had saved my earnings. I resigned, or retired, whatever you want to call it. Since leaving my job I have more energy, I feel better, I have less symptoms. I am able to do more, and do more things to take care of myself.  It is clear that the stress and physical demands of my job were taking a toll on me.

Because I am no longer working, I tried to apply for assistance through government funding programs (ODSP or the Ontario Disability Support Program.) I learned that I was not a candidate because I had saved up too much money. Frustrated, I told the woman on the phone that I was essentially being punished for becoming sick and saving my money to prepare for my future. It was infuriating. I was informed that I could call back once I used most of my savings, and had less than a certain amount in my bank account. She told me to call back once I had less than 5 grand in my savings, which would pretty much leave me in poverty. (As a side note, the average cost of a funeral in Ontario is a little over 4 grand.) I was also asked if I had any assets, because I would more than likely be required to sell them before being considered for ODSP.

If I did not live with my parents and have their support, I would have to rely on the ODSP. I would not be able to afford rent, pay for food, and my medication. The allowance received monthly is barely enough to cover rent in the area. A study in 2014 showed how more people who are disabled are living in poverty and are using a food bank. Does this sound like good social program to you? Because it doesn't sound like it to me. Why are we putting sick and disabled people in a worse situation instead of helping them? The system is set up so people who need disability can never get out of a financial hardship, or must put themselves in a financial hardship in order to apply- despite being unable to work due to a disability.

I completed university, and was planning on a bright future. I have worked for 12 years of my life, which may not sound like a lot, but I am only 27 years old. That is nearly half my life. I obtained a job where I was making good money and receiving benefits. I would have stayed and worked full-time if I could have, but clearly I couldn't. I saved my money because I don't really know what will happen in the future. What if medication becomes more expensive? What if I need treatment outside of Canada (because we do not have access to everything that is approved for PH here.) What if something unexpected happens? What if I am able to move out someday- because I would really love to? Am I no longer entitled to any of these things, or savings, because I got sick and became disabled? Does the government feel I am no longer entitled to have a future because of my condition?  Doesn't saving and preparing for the future make me responsible? Clearly I did not plan on this happening, nor did I want it to happen.

Let's examine divorce laws. If a couple were to get a divorce, one partner might have to pay spousal support (alimony) to their ex. The argument is that the other partner got accustomed to a certain lifestyle. Another argument is that maybe the lower earning partner had wasted potential, maybe they never went to school because they had children and stayed home to raise them. Thus, the other partner who worked (or is earning more) would be required to pay spousal support to their ex so they can maintain the lifestyle they had while married. I am not saying that it is unfair or unreasonable that people receive spousal support (because I have learned through all of this that I do not have enough knowledge to judge someone.) Although, I do think it is an interesting concept. I am not entitled to maintaining my lifestyle (even though I worked hard and got an education) because I got struck by metaphoric lightening. If someone could see the timeline of my life, they could see I spent half of my life working hard to prepare for my future.

It is strange being told that I am basically not allowed to have savings, or maintain/keep what I have accumulated. This disease has made me question whether I will be able to get married, move out, or have children. Now I am questioning if I will be able to afford these things, should I ever be lucky enough for them to happen. I feel very conflicted about my future for a magnitude of reasons. It is hard planning for the future when you are told not to invest too deeply into having one. When I decided to start living again despite what the doctors and statistics say, I have the worry of whether or not I can afford to live. I struggle with feeling like a burden, although I am graciously trying to accept that people help me because they want to, and  because they love me. I fear that now I will become an even greater financial burden. I've been with my partner for over 5 years. We talked about getting married before I got diagnosed. I don't know if I will ever get married now, but I hate the idea that he would be taking on my finical burden.

All things aside, for now I am fine. For now I am lucky. I know I have the support of my family and partner. I am also receiving a small amount of money for disability benefits from the insurance I had from work. (This will not last forever, and the amount is modest compared to what I made working full time.  The amount is actually close to what ODSP would have given me.) I will continue to save while I can, because I want to plan for a future. I want to plan for my future. For a while I debated whether I should make a board on Pinterest for my hypothetical wedding, or funeral. Recently, dreams of getting married have won. I have also made boards for interior designs that I like, because I want to move out too.