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.