PHighter Friday: Janeris

 Pulmonary Hypertension is a disease I had never heard of until it almost killed me. I've suffered with Lupus since 1997. I was 16, a senior in high school, and began having severe joint pains and fevers. I've dealt with the countless effects of that deadly disease for so long, I didn't look too much into it when I started having shortness of breath in 2006. I figured the fatigue, shortness of breath, and rapid heartbeat were just part of it. I went to a couple of doctors who just confirmed what I thought. It was the Lupus. They'd tell me to take more Prednisone for the inflammation and I did. The shortness of breath kept getting worse. I couldn't bend over without getting dizzy. The doctors I saw would say my heart was working pretty hard but for me this was all normal. I went on living; suffering.

I met my now husband in 2008 and our relationship quickly moved toward marriage. I warned him that I had a lot of issues and might not be able to have a baby. He said that he didn't care. He said God would make everything ok.  He was very supportive through it all.  I still worked out every week and was very active in church. My lack of health couldn't stop me.  We got married less than a year after meeting. It was just in time for my biggest supporter to get the test of his life. We chose to get married in Mexico. It was 4 wonderful days spent with family and friends. We stayed 2 more weeks for our honeymoon. For someone with breathing problems, Mexico is not the place to be. It seemed much harder to breathe in Mexico than in Miami. We still did everything we set out to do. We went zip lining, swimming with dolphins, walking in the city and more. Most of it, however was done with my new husband carrying me. Everyone thought it was so cute because we were honeymooners but I was in severe chest pain and honestly just couldn't walk. The last 2 days of our honeymoon were the worst days of the trip. I began hallucinating and having severe chest pain. I thought of calling 911 but was afraid I'd be stuck in Mexico longer than I wanted. I sucked it up and relaxed until we went home. We requested a wheelchair at the airport but still didn't think about asking for oxygen. I didn't know what was wrong. The air in the plane was much thinner and I thought I was going to die.

We went from the airport in Miami straight to the hospital where I stayed for 3 weeks. I just wanted to go home to be with my husband for the first time. My oxygen levels were at 50%. I was immediately put on oxygen. This is where I started to hear that I had problems with my lungs and might need a lung transplant. Once I left the hospital I sought out a pulmonary specialist. I found a great one in Cleveland Clinic who knew exactly what to do. I was quickly taken in for a right heart cath among other important tests. I was finally diagnosed with Pulmonary Hypertension and put on the right medication. I survived on Revatio for a while. But having to take it 3 times a day proved too much for me and within time I had worsened my condition by not taking the medicine properly. In 2011 I started passing out often. I once passed out at a doctor's appointment and was taken to the emergency room. That was the beginning of my new life. There I was put on Veletri, an intravenous drug. It was a tremendous loss of independence and control. It was a severe shock for me.

I was so sad and had a hard time picking myself up. Every night was hard for me. Tears would soak my pillow.  I didn't understand my new body changes. There was constant urinating, swollen ankles, hot spells, weakness, jaw pain, headaches, you name it, I had it. How would I ever get through this? I felt my life was over.  My church family came through to make sure I did get through it. They knew I couldn't cook, clean, or barely move. So for weeks they came and took me to doctor's appointments, cooked, and were right there for me. What a team God placed in my life. I am loved! Another thing that got me through it was something that my Veletri nurse told me. She said I was allowed 5 minutes daily to feel sorry for myself. After that I was to enjoy the rest of my day. Eventually I didn't need those 5 minutes. That was an important part of the early stages of my recovery.

I began to see that light at the end of the tunnel again. I knew there was a purpose, I just had to find it. Time passed and I was tired of being tired. I had gained 30 lbs. from the prednisone and lack of activity and was still having a hard time breathing. But after 3 months it was time to get back to work as a full-time photojournalist at a local newspaper. Slowly, I regained my strength and started looking for alternatives. I found a functional medicine doctor in my area and she taught me the importance of the right diet for my body. My joy came from documenting my journey on a blog  called My Clean Cutting Board. It dealt with showing people what I was going through and how I was improving my health through whole foods. What a difference eating right made. I took out gluten, dairy, potatoes, eggs, coffee, alcohol, and a few other foods that were causing inflammation and a negative immune system response. I started to get better faster than I thought I ever would. I started the gym again full force. I started working at my photo studio, which I run on the side of my full-time job at the paper. I started singing in church again. And less than  1 year later my husband and I began talking about adoption. He saw my progress and together we decided that we were ready to start a family.

Soon the good food changed my body completely. I was taken off the prednisone and the doses of some of the other drugs I was on were lowered. I was so happy. Just 2 years after I was put on Veletri, we became foster parents. Doctors said I was in good health and gave me clearance for this huge task. We got a 2 year old boy in May of 2013. I realized then that all I had gone through was for this moment. You see, he is autistic and was a handful. He cried when he heard loud noises. Not out of fear but out of pain. I couldn't control him or anything he went through. He was a little Tasmanian Devil.  Through my diet change I had learned about the benefits of a gluten and dairy-free diet on children with autism. I cried tears of joy when I realized all my struggles meant something. I changed his diet and he got better. As I was taking care of him God was taking care of me. I continued to get better and they called me to take in a little baby girl. She was 3 months old. I didn't know how I would do this. Here I am with two babies within a year,  health issues, and 2 full-time jobs? Was I nuts? I knew God was in control. He had a plan for me and He wouldn't let me down.

My husband and I have been taking care of our babies for almost 2 years now. We are close to adopting one of them. I have since lost 40 lbs. (They really get you moving don't they?) My husband has been the best thing that could have happened to me. He came at the perfect time. God has a plan for me and I didn't let PH keep me from fulfilling that plan. I could have been in bed feeling sorry for myself. That would have been easy. But I said NO! I got up and chose to change my life. I chose to seek alternatives because I refused to believe that I would need a lung transplant, that I was sick, that I would not survive. I will not be held down. God needed me for something amazing and I didn't want to let Him down. I am beating PH!



My Clean Cutting Board

PHighter Friday: Anastasia

Slowly but Surely

I wanted to travel the world. I wanted to be a powerful business woman (like Samantha Jones in “Sex and the City”) and have a family. Also, I love sport such as swimming, bicycling, playing basketball, playing badminton and playing tennis.  Most of my childhood was filled with fun activities, travelling, hanging out with friends and breaking the rules. But those dreams were crushed when my doctor told me that I will not be able to do sports that I love, I will not be able to travel, and having children is out of the question….

I was diagnosed with Primary Pulmonary Hypertension when I fifteen years old when I moved to the U.S. Back in Indonesia, I was always chubby and sluggish back in middle school and part of high school. My parents thought it was because lack of exercise and my general doctors in Indonesia did not detect any health issues. When I was about to start high school in U.S., through regular check-up, the family doctor detected irregular heartbeat and I started to notice apparent health issues such as difficulty breathing, chest pain and blue lips. So, I was urged to see a cardiologist and pulmonologist. Sure enough, I had VSD (Ventricular Septal Defect) and PPH (Primary Pulmonary Hypertension).

I was devastated…

For a while, I could not understand why this defect happened to me. Although, overtime I realized that wallowing is not getting me anywhere.

After the diagnosis, I had my open heart surgery on my 16^th Birthday to close the hole in my heart. I am taking medications to control my PPH. It is not easy to integrate this disorder into my life at first.

I realize that I am rare. So, as long as that is the case, why not go all the way.  So the key is to accept that I do have this unique condition and I am going to have to live with it for the rest of my life.

So I learn to get to know myself.

I am thirty years old now. I am working full time as a supervisor, I volunteered at convalescent homes, I go to the gym at least three times a week, I went hiking (5 miles up the hills recently) and I am finishing my bachelors in Management and International Business. I do what I can now and everything else will fall into place. I may not go with the phase of normal people, but I will finish what I start slowly but surely.

I changed pulmonologist who is better and gave me support. She advises that I should exercise and keep doing what I do at my own phase.

I believe that our journey gives us strength; the destination is just the icing in the cake. And getting to know myself is the fundamental part of starting the journey and setting up goals. Also, it is important to surround myself with people who are supportive of me and my goals.

Life may not always go as planned, but it does not mean that I cannot make the best out of the one I have now. Like Mother Teresa said ““Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin.”

PHighter Friday: Michelle F.

I am so excited to share my PHight of flight story with you all.  I hope this touches someone somewhere.

I’ll start with sharing with you that God blessed me with a child at the age of 16.  I am lucky to have wonderful parents that made huge sacrifices to raise her.  When I was diagnosed, my doctors told me that I couldn’t have kids because the mortality rate of pregnant women with PH was 50%. Instead of being angry about not being able to have another child, this news made me realize how blessed I already was to have a beautiful little girl.

Team photo before the race

The diagnosis changed the way I valued my relationship with my daughter Christine.  I know now that time is of the essence. The diagnosis really helped me refocus my energy on strengthening my relationship with her, my family and friends. 

July 23, 2013, is the day I went to urgent care for being short of breath.  I was swollen from head to toe.  I couldn’t walk 10-15 feet without feeling short of breath and my heart was racing uncontrollably. After a week of tests in the hospital I got the news. I had class II IPAH. 

I was prescribed Letairis and Adcirca but ended up taking Adcirca only.  In a year’s time, I went from a class II to a class I.

Pre-diagnosis, I had been so used to living with the classic PH symptoms.  I was always tired. I would have intermittent leg swelling, shortness of breath, rapid heartbeats.  Those things just became my “normal”.  I went to so many doctors who thought I had the regular systemic high blood pressure and I was actually relieved that now we knew what was really wrong. I was excited to see what life would be like on medication!

Post diagnosis, I am able to do 30 minutes of moderate cardio without feeling short of breath.  I can walk up 2-3 flights of stairs non-stop.  I even participated in The World Famous Camp Pendleton 5k Mud Run!  I completed this event with a group of amazing friends who helped me make it to the finish line even though I was ready to quit after the first quarter of a mile!  I walked most of the time, but I still finished the race!

It has been one year and two weeks since I was diagnosed.  Physically, I feel 100% better than I did before.  Emotionally, I’ve matured 1000% (one thousand!).  Yes, I know it is horrible to read the life expectancy statistics.  Yes, it is sad knowing this disease is progressive and there is no cure.  Yes, it is frustrating to accept that child bearing is not an option.  But the truth is, like the title of this blog, we have two options.  We chose the PHight or Flight. I chose to PHight. 

My “one year survivor” anniversary just passed.  As I reflect on the years I lived before diagnosis, I realize that I spent most of my life just existing.  In the one year post diagnosis, I have truly been living.  I work full-time as a paralegal at an amazing law firm.  I spend more time being active and making genuine connections with people.  I appreciate every minute have and spend my time doing things that make me happy.

Paola and Me

I didn’t start to live my life until I thought I was about to lose it.