My PH Story: Marilyn Rampersad

December 04,2017

My name is Marilyn Rampersad. I am a 29 year old mother of two sons; a four year old and a two year old. I have been living with Idiopathic Pulmonary Hypertension for the past two years. Although PH has caused me to change my lifestyle, I still try to lead a normal life.

I am on home oxygen, but I think society has a general belief that oxygen is the end of life or a therapy for older people. This isn’t necessarily the case. I’ve had people ask me if I’m dying when they see me wearing my oxygen mask. I personally had not seen a person using oxygen before my diagnosis, so I understand the curiosity, but to be honest there is no polite way to ask a stranger if he or she is dying.

This has taken a strain on my husband. Being young, it isn’t easy having to wheel your wife around in a wheelchair and not turn heads. Many look at us in awe, others look at us out of pity. I used to get depressed and not want be around other people. It makes us sad and insecure at times wondering if people look at us, but I’m blessed to have such a strong-willed man as my husband.

I was being admitted to the hospital time and time again, having to leave my babies behind. Then, on the 26th of July 2017 my cardiac specialist told me that they had found a large ASD. Not understanding the term, I went home and started researching. I am a very strong and independent young woman, so this to me was just another bump in the road.

My family became worried and emotional, but I still held my head up high with the faith that nothing was going to take my joy. Surrounded by my loved ones, I didn’t look at the negative of my situation. My family are those who stand by me all the way, and family to me doesn’t always mean blood. Their kind words and encouragement helped me face my own demons.

I was then admitted to the hospital for almost a month, away from my loved ones. The doctors ran some tests, and I had a few minor procedures done. I was prepped for the cardiac surgeons, who told me I would be awake through the next procedure, and that I could die. I took my stand and said I would go ahead with it, and that I didn’t want to be on life support should something go wrong. This type of thing is in the movies! Never did I expect to go through this in real life!

I decided I would just take this big step with God by my side. I went into surgery at 10am and came out at 2pm. My dearest husband was at the door waiting and anticipating when they rolled me out. The joy in his eyes gave me hope. The results were not good, but I recovered nicely. I was introduced to many doctors, and each and every one of told me my sons and I are miracles- as people with PH and large ASDs can die at a young age.

The shock of seeing a 29 year old with two kids have a normal birth is a miracle, so my God brought me this far, and I won’t let him give up on me now. After a long wait I was asked to call my husband as the doctors wanted to talk to us. We were then given the news that they can’t help me and the only thing that can help save my life is a heart and lung transplant.

Because I was in a semi-private, government financed hospital, they didn’t have the funds, facilities, or professionals who could do a combined transplant. I was sent home to just live and be prepared to die at anytime.

With mixed emotions filling my head I just prayed and asked God to take control. I am not prepared to give up!

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