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: Basil

I am a chronic optimist. I look for the positive in everything. It takes a lot to get me mad or upset and even more to shock me. When ever something negative occurs in my life, I try to look at it as “Is there a lesson to learn from this?” I am not a religious man. I do not conform to any religion. I am however, a very spiritual man, and it is these traits of positivity and faith that have mainly taken me from a man told eight years ago that he would need a heart transplant in five years, to the man I am today, with my original heart, still beating in my chest. And for all intents and purposes, it is now once again a normal functioning heart. And from the man in 2009 that was told he had pulmonary hypertension, and that the combination of conditions I had, probably only gave me a less than 50% chance of living to 2014, to the man I am today, now living without pulmonary hypertension and without a short term prognosis.

My journey with my conditions was, and is not an easy thing, but I never got negative. I never once asked “Why me?” I was given this journey, and I did not question why. If I needed to know, the reason would eventually show itself. What lesson did I have to learn? I never asked, because I also learned that sometimes our journeys are not a lesson for us, but a lesson for others.

I am tirelessly asked how did I get over having heart failure and pulmonary hypertension. What is the cure? What did I take? What is the secret? I didn’t go looking for a cure, or a magic potion. I thought about this hard and long and it was one simple change in attitude and thought that got me to where I am today.

When I started on this journey, I researched and researched and researched. I learned everything I could about all of my conditions and I could talk with my doctors in their language. They respected this, and it made it much easier to decide on courses of treatments to follow. And I stuck to the treatments. I became a dedicated pill man. And I would get better, and would have instances where I would fall back. It was all part of the whole getting better thing.

I did meditation. I exercised regularly. Took my medications. Researched what supplements I could take to support my journey. I was doing it all. I was fighting. But there is something I learned a long time ago. Sometimes, the more you push against something, the harder it will push back. But why was I pushing so hard? Was it for me? Was it for my family? What was it for? The bottom line was, I was not ready to die as yet. My wife needed me. I was fighting for my life.

Then, one day, I was going into have a medical test, and I saved a man from being hit by a bus on a New York street, and in the process, his phone was destroyed by the bus. The man was startled, but then he got angry. Really angry because his precious iPhone was destroyed. He started shouting at me. And as I looked into his angry eyes, I realized that it could have been me. I could have been the one hit by the speeding bus and not the one that pulled the man to safety. For all the fighting that I was doing, the research to get over my disease, I could be killed right now by a freaking bus. What was the point? All we have is today. To live in the moment. The here and now. 

That's when I stopped researching and obsessing over my conditions. I let go. I was no longer afraid to die. Yes I still wanted to live. I didn't give up. I just let go. I started to live for the moment, to appreciate everything in my life. I just needed to mind my business, try to do good in the world, and live. Just live.

And that’s where everything changed. I followed the same medical regimen, but I improved. I continued to improve until just this summer I was told I no longer had pulmonary hypertension and that my heart was no longer in failure. I was able to come off some of the drugs I was taking and now I just take four medications. At one point I was taking thirteen different prescription medications.

I told someone about living in the moment, and they asked me what exactly does that mean? Everybody says it. Living in the moment, to me, means to be content. Be content and appreciate all you have right now. We live in a world where we always want bigger, better, more, and that is all fine to want those things. But we need to be content and happy with what we have now. Try to get out of the “grass is greener on the other side” and “everyone else’s sugar is sweeter” syndromes. If you are not happy with what you have right now, when you get the better thing, you will be happy for a while, but it will not be enough. You will want something even bigger and better. If you don’t learn to be content in the now and stop looking for what tomorrow can bring, you will never be content, because when tomorrow becomes today, you will look again to tomorrow for happiness. As far as chronic illnesses go, always remember that God, the Universe, whom ever, never gives us more than we can handle. Just take deep breaths and picture yourself getting better. But be happy with who you are now. Don’t wait to get better to be happy. 

So, there you have it. There is no secret potion to my getting over pulmonary hypertension. And heart failure. Each of us have a separate journey to follow. Some of you will never get better. That's your journey. But never give up. Be positive. Be happy. Let go and live. Just appreciate the life you were given and just say to the universe, to God, to whom ever – “ Thank you. Thank you for this life that I was given. It may be painful at times, but it is better than the alternative.”

By Basil Rene

Basil Rene maintains a blog at http://lifeasananomaly.com, where he has positive posts about his life in general as well as his journey with pulmonary and cardiac sarcoidosis, heart failure and pulmonary hypertension, an implantable defibrillator, as well as a hole in the heart that took over six years to stop leaking after it was fixed. Basil also sends out positive tweets and can be found under the handle @BasilRene.