by her mother
I am the mother of a 17 year old daughter name Evelyn Melendez that has primary pulmonary hypertension. Here is her story…
Evelyn was born with mistral valve prolapsed. In the year 2000 she was diagnosed with asthma and for a few years she did good. September of 2004 was when everything started. She was rushed to the hospital with really bad chest pain, she was taken in the ambulance right from school. Everything was fine so they sent her home. I made appointment with her heart doctor they gave me an appointment for Oct. When he saw her and check her he said she needed to do more exercise. He said, “Don't spend so much time setting in front of your computer.”
A lot of things that had happen in our life that year, Evelyn lost her grandfather in June and her aunt in Nov. That week Evelyn's breathing was weird more snoring even louder and holding her breath. I decided that when we get back home that I would set appointment with her doctor. One day around the end of November or the start of December, she came down stairs and told me "mommy touch my heart,” it was beating very fast, I told her, “I'm going to call your doctor and set another appointment.” In December 17, 2004 Evelyn went to school left the house around 7:30 am. Around 10:00 am the school called that she wasn't feeling well it seem that she was having anxiety attack I called her father he went to pick her up, got home around 10:30am. She come in lay down on the sofa right way and went to sleep. Around 12:00 pm or 12:30 pm she got up coughing without stopping. I told her to go to the kitchen because if she throws up she was going to clean it up. As she standing up she said call 911. I ran to her and in a second she was blue. Her eyes were round back of her head she was so stiff my baby was dying for a minute.
My grandson Julian said, Mama, call the cops, call 911. I ran back yelling to God, “don't take my baby" you can't take her away from me. I started CPR I don't know if I was doing it right because it was the first time I had to do it. She came back. She looked at me put her hands on my face and said what are you doing? I hug her and kiss her. I started to cry, then she fainted but there was a difference because she had a little color in her face. She woke up when the ambulance came they asked her for her name and she couldn't talk. They picked her up and walked her to the ambulance. When I looked at her she had wet her pants she looked weak, pail, and limp. Taking her to hospital they got there around 1:00pm. They did blood work, oxygen, X-ray. Her oxygen was low, after a couple of hours they told us that she could go home that she was fine they didn't find anything wrong with her. My baby was not feeling well at all. We were getting ready to leave when she started to throw up and a nurse gave her a little pan so she could throw up but she couldn't hold it, she was so limp. The nurse ran back and told the doctor that they couldn't send her home because there is something wrong with her. The nurse came back and told us that they were going to send her to Leigh valley Hospital, “because we don't know what is wrong with her.”
We got there around 8:00 PM we went straight to 5th or 6th floor right away they did all kind of testing on her heart and asked all kinds of questions. I knew that there was something wrong with her heart because they were doing too much testing and not saying much. After a few hours a doctor came in and said that she was talking to a doctor in Children’s Hospital about her and that they didn't have the right equipment there so they needed to send her to children’s hospital and that a ambulance is going to come for her in a couple of hours. Her snoring is very loud and her breathing was very low. (I know that they knew what was wrong in Leigh valley Hospital).
The ambulance came around 2:00 am on December 17, 2004. On December 17, 2004 when we got there all kinds of doctors were waiting for her and on top of her putting all kind of equipment and running all kind of testing from blood work to you-name-it-she-had-it-done to find out what was going on with her. She was very ill, it is life threatening, my baby was dying and we didn't know from what. The doctors had to wait till she got stable for them could do more testing to find out what was going on. All day on December 17, 2004 doctors were in and out checking up on her. Dec-19, 2004 Doctor Brain Hanna and his team had a meeting with us to tell us what they think is 99% that Evelyn has PPH. “Your daughter would die within 2 years.” I just lost it, I couldn't believe what I was hearing about my baby "oh my god this must be a dream". The doctors said is not something you did or she did, we don't know what causes it. I still couldn't understand what is PPH. I never heard of it. The only way to find this disease is to do a catheterization. Doctor Brain Hanna showed everything to us step by step including all the bad things that could happen and what he wanted to do to save her life. He needs to do a catheterization to make sure that it is PPH because it is the only way to find out. We agree. All I kept thinking was that my baby is going to die within 2 years "what a nightmare".
On December 21, 2004 happy birthday "sweet sixteen." What a birthday. Evalyn looked a littler better, the whole floor came in to sing happy birthday. December 22, 2004 was the day for her catheterization. The doctor told us that if she would have PPH that she was going to come out with a pump on her and a wire attached to her chest that would pump medication (Flolan) to her lungs and this would be on her 24/7. The doctor came in and told us that he would talk to us tomorrow because it late and they are going to bring her in soon. Oh my god she was hooked up to the machine that give her Flolan. My heart is torn apart to see my baby hook up to the machine and that wire on her chest plus other machine because she was so critical, they kept a close eye on her. The worst part is waiting for the doctor to come and talk to us. I sat next to her all night and watch her sleep, praying and crying all night "please God don't take my litter girl from me, my girls are my life with out them I don't have anything.” On December 24, Christmas Eve, (we spent every holiday in the in ICU) Doctor Hanna came to see us and talk to us about the surgery. Now you know that she has disease call PPH and she has it in both lungs. I don't know how much of these little tiny sacs are going to able to open because it seems that she had the disease for a few years. A very bad misdiagnosis of asthma "what a mistake" but there is no other way to diagnose this disease only by doing a catheterization. He had give her 50/50 her number were so high like her PVR was 250, her liver was so enlarged, but she was in god hands right now.
We spent two and a half weeks in ICU, then the rest of the week in a regular room. We were there for a month and a half in Jan 2005 we went home. We were so scared at first. The first night home we cried, we wanted to go back to the hospital because we knew that if something happened we would be right there. For a whole year we were a big mess, stress, and depressed, when we went up to children hospital every two months for blood work and other testing. There are four stages for PPH four being the worse one, four is the one she has. On December 7, 2005 he did another catheterization. We were so nervous and scared because that was when he was going to tell us if she was doing better or there was no hope. She’s doing very well right now her survival is 98% her PVR went from 250 to 10 she has responded very well to the Flolan, in the middle of the year he had talk to us about putting her on pills. In July he started her on Revatio and in August on Tracleer she is doing very well. She's happier and has gained weight and has more freedom and enjoy going out with her friends without worrying that she needs to change her ice.