My name is Amy and I am 35 years old and have pulmonary arterial hypertension. I was diagnosed four years ago and I am finding out more and more that I am so very lucky and have a whole lot to be grateful for. Before my identity became that of a pulmonary hypertension patient, I was just Amy, the recovering addict. Believe me, that identity alone was more than enough to contend with. Though I was, and am, one of the very few success stories.
At the end of a horrific active addiction, I found myself pregnant. At the time, I considered that to be about the worst possible position to be in. Though, it turned out to be the best thing that could have ever happened to me. Looking back now, I am convinced that I was no longer in the driving seat at that point. It was divine intervention and the help of some amazing people that enabled my life, and my son's life, to proceed in the next direction. Simply put, I got clean and eventually gave birth to a completely healthy baby boy. My child was finally enough reason for me to get clean. I vowed to dedicate my life to helping other women like me and became an advocate for other addicts and began my education in the field of addiction recovery. I also made a solemn promise to my infant son that I would use my second chance for good and would not use again. Eight and a half years later, I have kept my promise.
Around the time my son turned four, I started feeling really run down and tired. I was an avid gardener and I found that whenever I bent over to dig in the ground, I would get this horrible burning in my chest that would eventually have me lying on the ground gasping for air. My heart would literally feel like it was beating out of my chest. I made an appointment with my primary doctor and she listened to my symptoms and said it could be this, that or the other thing. I assumed that I was just a little overweight and out of shape. The fact is that I gained around 40 pounds when I was pregnant and had an almost impossible time taking those pounds off. So, she gave me an EKG and sent me for an Echo. During my Echo several days later, the technician asked me if I had ever taken any diet pills before. I said "no" and didn't think much of it. Of course we all know why she asked me that.
I went back to my primary doctor and she said that she thought I had pulmonary hypertension and she wanted me to see a specialist to confirm. I honestly did not give it too much worry because it really didn't sound like a real serious thing. Hypertension? I knew lots of people with hypertension who lived very active lives. (A little side note: Wouldn't it be easier to explain the illness if it didn't have such a common name like hypertension? People don't realize that when you put the word "pulmonary" in front of it, it takes on a WHOLE new meaning) She didn't go into detail and I think I am glad she didn't. She sent me to a pulmonary specialist who had a notoriously bad bedside manner. However, he was supposed to be good so my doc was confident. Needless to say, this man scared me to death. Within 2 minutes, he proceeded to tell me that I had a very rare and serious condition and had 2-5 years to live. I was terrified. I am a single mother and all I could think about was how I was going to leave my son. He needed me and I was going to die.
For the next few months, I didn't do much. I found a new pulmonary doctor and he said that he couldn't really help me because I had Hepatitis C and would not be able to take Tracleer. So, he put me on Coumadin and watched me. That just wasn't good enough as far as I was concerned. I was writing wills and letters to my son and feeling my life slip away a little more every day. I was in a panic but I was also pissed. I felt like God, or whomever, did not get me through years of life as a heroin addict only to drop me on my head now. So, I got online. I went onto this wonderful site, went to the message boards, did some research and used the 'find a PH doctor' tool. I found Dr. Michael Scharf at Deborah Heart and Lung in Browns Mills, NJ. I had my records sent over and he brought me in. I liked him right away. There was no doom and gloom. He wasn't giving me time frames. We just began a course of action. He scheduled a right heart cath, BNP, 6-minute walk and an Echo. My pressures were in the eighties, though he said that I examined quite well and didn't appear very sick yet. He put me on Ventavis and Revatio and I began to feel better. I went about my life. I can't say that I felt great, but I was getting it done. My son was getting off to school and his needs were being met. I considered any day that I took care of him, got myself showered and dressed and got a little done around the house a very successful day.
I saw Dr. Scharf every few months and we adjusted things from time to time. The Ventavis wasn't really doing anything any longer so I was just on Revatio. My dose was bumped up a couple times though everything stayed pretty status quo. That is, until my last visit.
When I saw him a couple weeks ago, he said that my BNP doubled and my walk significantly worsened. He also saw some tell-tale signs that he hadn't seen before with me, like ankle swelling and distended neck veins. So, it was time to change up a bit. We talked about Remodulin and Flolan and I chose to go on Flolan. I had heard horror stories about what a pain in the ass it was but I also heard some real stories of hope. I saw people who were alive 10-15 years later and those were numbers I could really get with. So, that is where I am right now.
I am going into the hospital in exactly four days to have the catheter put in and to get started on the drug. I have been working with a phenomenal nurse from Accredo who has been teaching me how to mix and getting me prepared. I am scared and sometimes worried that I won't be able to handle it as it is a lot to take in! Then I remember that I have surpassed all kinds of odds and I am still here. I have made it this far and I am going to keep going. I was debating whether or not to write this now. I was thinking that I would wait until after I get the Flolan to put more of a conclusion on my story. Then I realized that it isn't the conclusion. This is just another point where I pause and regroup. We get to keep doing that over and over and I find that truly refreshing and remarkable.
The doctors assume that I got PH from my past drug use. They feel that it was either brought on by crack cocaine use or by the cut that is used with heroin. I have never really wasted much time feeling pity or wondering why all this had to happen. Who knows what the plan is for me? I guess I get to figure out all that as I go...and I am just so grateful to have that chance.
I am enormously grateful to my primary care doctor. I was so fortunate to have such a smart diagnostician in my corner. I am hopeful that more doctors will become educated about the warning signs of PH so that fewer people will get lost in a sea of mis-diagnosis. I am also grateful to my PH doctor. He is just such a great doctor and a true mensch in every sense of the word. I am also so grateful to my mother for allowing me to live here rent free with my son and give him a solid stable home to be raised in. Not having to worry about getting to a job everyday has made living with this disease easier to handle. I must also mention the wonderful people who have made this site and this organization the PHenomenal resource it is today. Without this site to turn to, I may have never found my doctor...and my sanity.
So, I will update as I go and hopefully I will get to look back and marvel at how truly far I have come. I am already pretty amazed. All I have to do is look at my little boy to witness something miraculous. He doesn't let all this stuff get to him. He knows my limitations and helps out so much. He also knows that maybe one day real soon, Mommy may be able to keep up with him again. The future truly looks bright.