My Heart History

Hi - my name is Rebekah, and I was born in 1985 with Transposition of the Great Arteries (TGA) and other heart defects. I was not diagnosed until I was 5 months old because I also had holes between each atrium and ventricle and my patent ductus did not close. Because of the length of time before anybody even knew I had these problems, my cardiologist did not recommend open heart surgery and fixing my heart completely. They did a surgery, but not open heart surgery, to band my pulmonary artery and close my patent ductus. This was considered a "palliative" operation, and I did do better but by the time I was 4 1/2 I was getting very blue and going back into failure to thrive. Dr Teske did a catheterization and my parents say he was devastated after it; he gave them the news that there really wasn't a good option. I needed a heart-lung transplant because the arrangement of my heart was causing Pulmonary Hypertension (PH). The PH is high blood pressure in my lungs, which was causing my lungs to wear out quicker than usual. At that time the survival following such a transplant was less than 5 years for kids under 18, and he didn't consider it an option. No surgery and I most likely would not make it to 10 years old but with the PH he couldn't recommend the current surgeries to correct the TGA. Dr. Teske took my cath tapes to a cardiology convention and presented my case to several surgeons, and Dr. Bove of the Univ. of Michigan said he thought a modified Arterial Switch-called a Jantene procedure - would be a good palliative option. He was willing to try when no one else was! They said the chances of my living through the surgery was 75%, but I could gain many more years of being pink, and while I would continue to have an abnormal heart (the arrangement of it and the fact that I still have a hole between my left ventricle and atrium) and the PH I could expect to go into my 20's or 30's without anything further. So just after starting Kindergarten I went to Michigan, my parents were torn as they handed me to the surgeons. I did very well, and 11 days later I was home and had oxygen stats in the 90's for the first time ever. My heart sits in a different position than normal, and I can not exercise as I would if all was normal but other than my "zipper" few people can tell there is anything wrong. As a kid I could not do all the things "normal" kids could do, but for the most part I did most everything I wanted to do....can't run in gym - I didn't mind. I got to know several kids with heart problems through a camp our Columbus Children's Hosp holds once a year and a support group my Mom joined - today we all are doing very well and some of us are now counselors at that camp. It has been great to have friends who are physically much like me and have similar scars!

My oxygen stats have fallen as I have gotten older. The hole in my heart causes the PH and at 17 I learned there was a formal name for my condition-"Eisenmengers Syndrome". Basically it is because the way things drain and pump they had to leave the hole, and it creates the elevated blood pressure - PH. By 17 by my external oxygen stat had fallen into the low 80's. The summer before my senior year of high school Dr Teske called us and wanted me to go on a newly approved drug aimed at controlling the damage to my lungs caused by the PH. My parents investigated it and agreed it was a good choice, but found out that I most likely should not contribute an egg when I was ready to have children -the babies of the testing animals were born dead or severely deformed. I learned that not only could I never carry a baby but contributing an egg for insemination into a surrogate would not be an option. I was very upset, but just before getting this news I had picked up a Time magazine (at 17 I have to say it was God - I wanted to read an article about the Left Behind series) and in it I had read about a brand new option to freeze eggs and a doctor who was having success in insemination utilizing the eggs at a later time. I asked my parents if I could do it and shortly thereafter I went to LA, flying back to Columbus after 11 eggs were harvested. With a 50/50 chance of success I may one day be able to be a Mom to my own baby. Also prior to getting this news I had met and fallen in love with Ryan, who was wonderful through all this - and true to most things in my life, I get into things earlier than most, I married him when I was 19. Dr Teske danced at my wedding! He was so pleased his "kids" are now living long enough to get married....I started college and things were going along well except that my drug was costing $ 3600 a month and Ryan's insurance only paid 60% of it. When Ohio cut funding on a special program that was paying the balance I had to go to work full time to get insurance. I had to drop down to part time school; I am studying to be a Sign Language Interpreter. I am very busy in my church, teaching middle school kids and my long-term goal is to be a Youth Pastor to the Deaf. It is a long way off, but I know I will get there. I live a mostly normal life, have many friends I hang with, and am very busy. The optimum time for the eggs is to use them within 5 years and we are approaching that anniversary this summer, and my cousin who has 3 kids of her own has volunteered to be our surrogate. We went in February for the LA doctor to examine her and approve her as a surrogate, and she was, so this July Ryan and I will be going to LA, Shannon will join us and Dr Kim will be doing an implant of 2 embryos -hopefully we will come home pregnant! If all goes well I will be a young parent but a VERY grateful one!

Oh about the success of the drug -Tracleer -I take it just 2 times a day, along with one baby aspirin that's all the drugs I have to take. My stats continue to be good, they have not worsened and I do a little better each time I go for the 6 minute walk test...no one knows how long the drug will work, or if it will ever quite working. I have lots of hope here too because more drugs are being used for the PH all the time and it means there are other options available. While they still say I may need the transplant some day, there is hope that I may never need it...I have been blessed in that God has given me what was needed each time I have needed something. If I was born a few years before I was I would not be here now...New things become available and while I would prefer not to continue to be in the medical journals, as I was following my open heart surgery, I am hopeful I will live a long and happy life!

One more thing, on a much lighter note I got to do some things I probably wouldn't be able to do if I hadn't had this heart defect. I got to meet New Kids on the Block when they were HUGE. My sister used my story so she could meet Joey McIntyre and in turn I got to go on stage while he sang to me and my sister and I met Joey and Jordan Knight backstage before the show. I was in a national magazine because of this (which I think is cooler than actually meeting someone famous). I have had many opportunities to meet people I never would have if I didn't have this condition. As a kid growing up with this I didn't see myself as different, I always knew my limits and always smiled when people asked me what color lipstick I was wearing, I naturally have a deeper red color (okay more purple) in my lips. People are always amazed when I tell them I’m not wearing any makeup. Yes, I have had surgery on my heart, and yes I am purple all the time, but really other than getting out of breath while walking fast while talking I don't consider myself different. THIS IS ME :-) and I really feel like anyone else! Feel free to contact me via my blog - God Bless!


" LiFe Is NoT bEiNg WhO yOu ArE bUt RaThEr CrEaTiNg WhO yOu WaNt To Be!" ~ Unknown

Bekah Salser, Age 22
April 24, 2007