Sunday, 17 January 2016

My Experience: Depression and Pulmonary Hypertension

Facing a serious and potentially life-threatening disease is no easy feat. When I look at my life, it is now divided into two parts. Before diagnosis and post-diagnosis. I am also divided between who I was before this all happened, and who I am now. It has affected every aspect of my life, such as ending my career, to complicating my relationships with not only my partner but my parents and friends.

I was diagnosed with Pulmonary Hypertension at the age of 25, and it completely unraveled me. I had lead my life thinking that I had my whole life ahead of me, only to find out it may end out much sooner than I would have hoped. I was certainly aware that I wasn’t invincible, but being a young adult gives you a false comfort of time. Throughout my youth I was a bit of a loner, and worked very hard to balance a part-time job while attending university. I was preparing for later, for when I thought life would really get good. I was saving up to move out, started my first real career job, dreaming of getting married and thinking about having kids when I found out that I have PH. I feel like I was treating life as a lay-away plan, hoping to enjoy it once I reaped the fruits of my labour. What I really wanted was a simple life, and that is what I was waiting to enjoy. It feels like my diagnosis has taken many of those plans away from me. As you can imagine, it became very difficult to find anything to look forward to.

I have struggled with depression my entire life. I remember being as young as four or five years old the the first time I had dark thoughts. I was a very shy child and also suffered from crippling anxiety. I was often ill as a child and had spent some time in and out of the hospital. I learned in school that being sick and hospitalized often as a child can contribute to depression and other mental disorders later on in life. I began to really struggle with depression as a teenager. I was eventually offered medication from a family doctor. I politely declined, feeling it wasn’t the right choice for me. 

I was very hard on my self, and I never felt I was good enough. I am not sure where this feeling came from because my parents have always been incredibly supportive. I put an unreasonable amount of pressure on myself. Depression affects everyone differently. I had a hard time finding value in myself, or value in the life I was trying to make for myself. I felt like such a loser no matter how hard I tried at things. I felt unlovable and unworthy (even though I had incredible love from the people in my life.)

Unfortunately, I couldn’t see how good my life was for a long time. 

It took the brink of death to help me really appreciate life. This isn’t to say that life after diagnosis is a blessing, or that I no longer struggle with depression. After diagnosis I was recommended medication to treat my depression. I explained to my doctor’s that of course I was depressed, look at the news I had just received. I politely declined medication for treatment for depression once again.

The depression I now faced was paralyzing. I cried before bed and when I woke up, and sometimes I cried throughout the day. I barely spoke or ate. I became withdrawn. It was hard to find a reason to get up most days. That is the weird thing about living with Pulmonary Hypertension. I want to live so badly, but not under the conditions the disease offers to my life.

 I decided that I was tired of wasting my valuable time feeling so terrible- so I started seeing a life coach, and spoke to my alternative health practitioners about my depression.

Living with a life-threatening or chronic condition can understandably place a damper on one’s life. Suddenly it feels like we are in a world we no longer belong in because of accessibility issues, or the need for medical equipment. Sometimes it can be hard to enjoy aspects of life because of the all of the side effects of medications, the new equipment we need to stay alive, the pain we feel, the emotional burden we carry, and whatever else comes along with a disease.

I found myself having a hard time knowing who I was anymore. The disease weighed so heavily on my self-esteem. Suddenly, I felt and looked like a different person and it wasn’t a version of myself I liked. I would cry sometimes looking in the mirror, seeing how frail I looked, and having a nasal cannual attached to my face made me self-conscious. Prior to PH I knew who I was, and I had already created and obtained my own identity. After diagnosis I had to figure all of that out again. I am still trying to figure out who I am (and who I can be) now.

Unfortunately, there is still a stigma around mental illness and chronic conditions (like PH.) To the naked eye people with depression, PH, or both, can look ‘fine.’ A lot of symptoms are chalked up to being in our head, or easily fixable (which is often not the case.) What outsiders fail to realize is that we would much prefer not to have these problems. I didn’t decide to have Pulmonary Hypertension, but life had other plans.

 If I had my way, I would have preferred to have a life less complicated by disease.

I hope that this can bring light to the fact that depression, and other mental illnesses like Post Traumatic Stress Disorder (PTSD,) are very common among people within the Pulmonary Hypertension, (and chronic illness) community. We are constantly exposed to triggering environments. Such as the hospital, where routine tests are often performed. This environment, the treatments and the tests are often associated with negative memories and experience. I experience vivid nightmares where I wake up because of the sound of my scream, covered in sweat.  I also have panic attacks when I have to go back to the hospital where I was diagnosed. They left me in a wheel chair facing the wall while I cried.  This hall way is where I used to do a walk test. Needless to say it was hard to get good results when all I was reliving the worst experience of my life. Luckily, these nightmares and attacks rarely happen anymore- but of course I still struggle. It would be very difficult to go through many of the experiences of having a life-threatening illness and come out of unscathed.

If you are struggling, please do not be ashamed to find the right treatment for you. There are lots of ways to seek treatment. Talk to a doctor, family member or friend that you trust. When finding professional treatment, do not settle. Find someone who you have a connection with, someone who you trust and helps you feel a little safer. There are not only doctors you can talk to, but psychologists, social workers, life coaches, alternative health practitioners and so on. These qualified specialists can help discuss various treatment options with you as well, and help you develop coping skills.

Ironically enough, my depression is probably the best it has ever been in my entire life. I have found a regimen for myself that works well for me. I practice different alternative therapies along with meditation and yoga. I know that I am human and still allow myself a few days if needed to be sad. This usually happens after a PH appointment. It is very difficult to get used to, but I try very hard to live in the current moment. Even though things may suck (for lack of a better word,) there are still things around me that I can enjoy. There are also many things that I am grateful for. This experience has really taught me to appreciate things more, including myself. When I was first diagnosed I thought I shouldn't enjoy things until I got "better." Now I have learned to try and enjoy things while I can.

My life isn't perfect, or what I had hoped it would be. However, my quality of life was so bad before that it has helped me appreciate my health now. Sometimes I get caught up thinking about the future, which can be pretty scary. It is human to be scared, but you have to be able to find the right balance. I give myself a few days to deal with the grief, but try to let deal with my emotions and let them go. What I am going through isn’t easy, so I have learned to be more patient and kind with myself. This has also helped me learn how to be more compassionate towards others.  I am no longer hard on myself. I have also learned how to love myself, which I desperately needed to do in order to take care of myself and truly love those around me.

I hope that this can encourage anyone who is struggling to reach out. Please know that you are not alone. Reach out to someone you love and trust, and find the best treatment plan for you. Don't be afraid to speak up about how you are feeling, and be kind enough to yourself to find help.

xo Serena


  1. My sister, Lisa Ramirez (Dallas, TX), was 20 when she was diagnosed with PH. She had just completed her first semester of her sophomore year at Texas A&M. It was a life changing event for her for sure and all of us - her family. She spent the first two years after diagnosis learning about PH and the treatments. I think that is when she decided how she wanted to live her life - like a normal twenty-something. She did not want to do the recommended and very invasive treatments thus that significantly reduced the likelihood of a long and prosperous life with PH. She too battled depression and denied all treatment related to it - both medicinally and counseling. My sister lost the good fight on July 3, 2014 at the age of 26. It has been a long and hard grieving process to loose my sister 16 years my junior. She was my baby sister and best friend.

    I can only speak about PH from the prospective of my sister and our family - she was in her twenties when diagnosed. To old to allow my parents to make every medical decision that was best for her and not old enough to have started a full adult life with finding a soulmate to live with and for. It is for this reason, that I have dedicated time and effort to memorialize my sister with my continued and active involvement with the PHA and Lone Star Chapter of PHA. I want anyone that reads this with PH and in their twenties who feels like they have nothing to PHight for to call or reach out to me. After meeting so many more PH patients since her death, I know that there is something to PHight for.

    Aaron Ramirez

    1. Hi Aaron,

      I am very sorry to hear about the loss of your sister. The way in which you honour your sister is very giving. Thank you for continuing to give back to the PH community.

      Wishing you all the best,


  2. Hi Serena, For about 18 months after dx of PH, I was very depressed. I had led a very active life until then, and realised eventually that I was mourning my lost life. I am lucky that oral meds are working for me, and I have gradually clawed my life back. I decided that I wanted to live each day to the full. Sometimes I push things way to much (and nearly died of pneumonia as a result of that). But basically you could get run over by a bus at any time, and I would rather go out early, kicking and screaming, having had a hell of a ride, than sitting around trying to live as long as possible. I have recently bourght a 3 year pony, so have no intention of quitting for the next 20 years!! They are working hard on a cure, so we must live in hope. My motto is 'I don't live with PH, PH lives with me.' And it had better hold on, coz i ain't slowing down xx

    1. I imagine many of us are hit by a wave of depression after diagnosis. We are certainly given a lot of challenging things that we must learn to adapt to.

      I am glad to hear that you are still doing well, and doing well on oral meds. Very cool about the pony :) Love your attitude and motto. Thanks for sharing xo

  3. I'm not sure my first response will get published, I don't think I pressed the right buttons - never mind.
    I 've been so impressed by your story. I'm not sure what I was expecting, but it was so open and honest. I can associate with everything you spoke about and it was comforting to hear that 'you're doing just great'. Like you Serena, I have days when I indulge in self pity, let it pass and move on. I have three children and when they were young, they came first - never mind PH. I would be in survival mode, I think, and just denied the severity of it all. Die - no way, I had a job to do. I've always been a bit stubborn.
    I'm now 17 years in, with a very nearly 17 year-old daughter, a 27 year-old son and 31 year-old daughter. I am also blessed with four beautiful granddaughters and a grandson on the way.
    We've had our challenges in the past, some more than others, and some I wouldn't wish on my greatest enemy (not that I've got any!), but we've survived and that's one of the greatest feelings. The strength that other patients, and their families show, is unbelievable.
    I'm so glad I dropped by and made the time to read some of the post, you've inspired me. I don't think it's too late you with you all a very happy & healthy 2016 and beyond.......... Xxx mwah

    1. Hi Sue,

      Thank you so much for taking the time to read and comment. I am glad you found it honest. I imagine it must be very difficult to be a parent and have PH, because I know I have had to put myself first since diagnosis (which parents often don't have the luxury of doing.) Amazing to hear that you are a parent, and have been kicking butt for 17 years! If you are ever interested in writing about yourself for a PHighter Friday, please let me know! It would be great to share a story from someone who has accomplished so much after diagnosis.

      Wishing you all the best for 2016