In May of 1990, I was 29 years old. I was a nurse and mother of three planning my eldest’s child’s Kindergarten Graduation. My daughter was 4 months old, I was able to work 40 hours most weekends enabling me to stay home during the week and be a “stay-at-home” mom and everything was perfect in the world.
I remember a close friend telling me that I seemed out of breath while carrying my daughter, but I dismissed it and reminded her that I had three children, ages 5 and under, and still had my “baby fat”and that when I stopped breastfeeding I was going to get in shape. The following month, while driving my sons home from Karate class, I felt my left arm go numb. I thought I was going to have a migraine headache, which was not unusual for me, but then it moved up my left neck like an “egg white” had dried on my skin. I suspected it had something to do with my heart and prayed to God to please let me get my kids home. Once safe in my driveway, I turned the car off and just sat there. My husband had been visiting with a neighbor and he came over and asked me what was wrong. I tried to explain what I was feeling and he helped me into the house and called a cardiologist that we knew. He instructed us to come to the office in the morning, but to go to the emergency room if it got worse. It subsided, and I went to see him.
He ran many tests including an echocardiogram which show my right ventricle enlarged and ordered a lung scan to see if I had blood clots in my lungs. He was going on vacation the following week, the test turned out negative, and we were relieved. Looking back I realize that blood clots would have been a relief. Upon return, he performed a heart catheterization and diagnosed Primary Pulmonary Hypertension (PPH). I was an L.V.N. but had never heard of this condition, so I asked what medication he would prescribe. With my husband by my side and my baby in my arms, he instructed me to “put my affairs in order”. He prescribed Coumadin, a blood thinner. As a result, I had to stop breast feeding my daughter. I will never forget that last feeding.
Six months later, following fainting spells, I was admitted to the hospital. I told my doctor that it was impossible to keep up with my toddler because of the fainting spells, so he contacted a Pediatric Cardiologist, specializing in PPH. After explaining it was caused by the left side of my heart not having enough volume to keep my systemic blood pressure normal because my blood vessels in my lungs were being constricted, he mentioned a surgical procedure that he could perform to help increase the volume of blood to the left side of my heart by putting a hole in my heart.
The procedure was called an Atrial Septotomy, but it too had risks. He said I would either improve or not make it off the table. He gave me a week to think about it. I asked my son, then 5 years old, to sit on the hospital bed with me. I looked into his eyes and told him “Mommy needs to have surgery, but it’s dangerous- the doctor said I could die”. He looked at me and his eyes got as big as saucers. He didn’t say anything. I told him “you need to go home and pray about it”. The following morning he came to visit me and he jumped up on my bed and said “You’re not going to die, Mommy!” The decision was made. The following week I had the surgery. It was successful except for a tremendous drop in my oxygen saturations. I had no more fainting spells and was able to take care of my toddler.
I recall one clinic visit when my oxygen saturation was checked and it was at 52%. The nurse asked me if I was OK. I told her I was fine, that my body was used to it and I had driven myself to the clinic alone. Once, when my daughter was going up the stairs, she stopped and was just standing there. I asked her what was wrong. She said “I’m catching my breath.” It tore my heart out that she had to learn this from me.
After about three years, I was getting progressively weaker. My children’s pediatrician mentioned that he had seen, on a TV program, a new drug called Flolan, prostacycline, administered through a Central Line into the heart, that was used to treat PH. He had written down the number of the doctor in Chicago. I called his office and the nurse was so attentive that she called Burroughs Wellcome and found that Dr. Adaani Frost was in the study locally. It was a miracle! I used Flolan for about 18months and met three patients that had Flolan, so we started meeting at the local Denny’s restaurant once a month. I circulated flyers to see if more patients wanted to come, and they did. We had about 10-12 patients during those first few years. Only about 4 of the original are left. We still have this support group today, now meeting every other month, and we have quite a few new patients. I also provide support to patients via telephone or email if they prefer.
On April 11, 1995, the day of the Oklahoma City Bombing, I had developed a low grade fever and excruciating pain in both of my feet. I was hospitalized and put on IV antiobiotics and had my Central Line changed. They eventually diagnosed a Fungal Infection in my blood. I spent three months in the hospital and was discharged in June. I had always told my doctor that as long as I could laugh, I wasn’t ready for a transplant. I stopped laughing. Each and every breath was an effort. Sometimes I would be thirsty, but I wouldn’t get myself a drink because it was too much effort to get it. My wonderful husband along with my children had turned into caregivers. It was so hard for me to watch them taking care of me when I should be the one taking care of them. I was listed for a transplant.
I had three “false alarms” to have my tranplant, each time saying goodbye to my children- they knew that they may never see me alive again. No one should ever have to endure such pain. Finally, on the evening of October 5th, 1995, it was a go. It took me almost two weeks to get off the ventilator and six weeks to get out of the hospital. I was terrified of going home; I was used to being in charge, after all I was a nurse!! Nonetheless, I was discharged on November 11th but my legs were so weak that I was unable to lift myself up off the commode. On November 25th, my son’s 10th birthday, I felt as though I was getting stronger from the Occupational Therapy treatments. I leaned over and grabbed my ankles, then I pushed myself off the sofa and walked my hands up my legs and stood up. Just then, my son entered the room and said “that’s the best birthday present I could ever get” and we embraced. After that day, I haven’t stopped moving! By January, I was giving my daughter a birthday party with thirty six-year olds without having to stop to rest. One day, my daughter and I were in a hurry at the local supermarket and she told me “Slow down Mommy, I can’t keep up!” I stopped and looked at her and said “What did you say?”, we just started bursting out laughing so hard that other customers looked at us, but we didn’t care. We knew.
I was able to meet my donor’s family on my one year anniversary. We have kept in touch and we spend some holidays with them. They know that they can give their daughter’s lungs a hug anytime they want to. I went three years without spending the night at the hospital. I had some rejection in 1998, but once they treated it, I have not had any since. On October 6th, 2003 it will be 8 years. I have watched my children grow up. My eldest is now in his second year of college, another is a Senior in High School, and my daughter is now Student Council President in the Eighth Grade. I have enjoyed Baseball/Soccer Games, School band concerts, vacationing with the family, helping my son move off to college and into an apartment, tending to illnesses and broken bones. All those wonderful things a mother’s life affords. I recently celebrated my 43rd birthday and thank God for each and every day.