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

Little Acts of Random Kindness!

Today I shared my story with a co-worker of mine while i was filling in at another location. He was blown away with my story to the point that he teared up a little bit. He thought about it all and really hit all my thoughts right on everything i have thought about. I was kinda amazed really. No one has ever asked me things like "don't you just want to tell your cousin what to eat and make sure she's protected at all times?" i was like "EXACTLY!!!! yes!" I told him Ryan and i never had a honeymoon so we were going to go to Vegas while we were out there for a day. A little later he went out side to talk to someone and came back in.
He said to me, "this may seem a little weird but i need to do more nice things for people. SO, i want you to take this (handing me some cash) and shoot some craps or something on me while in Vegas. I know your spending a lot on all of this so take that and have fun!"
I was just amazed! It wasn't a lot of money but it doesn't have to be. He was so moved by my story that he felt compelled to help us out even if it was just a small amount. IT REALLY MEANT SO MUCH!
SO, Thank you! ALL OF YOU, from great amounts of $$$ (mom and dad) that really i could never ever repay. To small acts of kindness that happen on the most usual of all Thursdays that makes my day! THANK YOU SO MUCH!

12 "Work Days" and Counting....

As my Husband says there's only 12 working days 'til we head on out to the Golden State. (but who is counting right?) There's soo much to do untill then. I'm clearly not as excited as he is. but that's alright..

Ryan and i never had a honeymoon so we decided we are going to go to Vegas for like one day.......with my cousin... nice mock honeymoon huh? lol well we can at least say we made a baby on our honeymoon! ;-) I can't wait to see all the crazy lights and stuff. I want to play a slot machine and have a drink brought to me while i loose all my quarters (For a toast to my grandmother who passed in November). I will win about what i brought back and i will keep walking. I'm excited for that. At least I've got that!
However I'm not excited about spending an arm and a leg on EVERYTHING in LA. I'm not looking forward to LA traffic. and I'm not looking forward to $4.00 gas or old women thinking they look young because of all the PLASTIC in their bodies... riight.... i find LA such a "fake" city. it's all hyped up on looks and money. Amazing really how this city can bring me the most real thing to me. Real life stuff that makes the most average part of a Tuesday what i cherish most. Real life stuff that makes my life whole. More than what money could ever do.

I talked to shannon today she is currently on like 12 different medications... ha ha not really but it seems like it! She said she is on:
1 shot a day, a patch, asprin, and vitamins. Maybe more I can't remember. I didn't realize it was that much at once. WoW! She says to me "I best not have morning sickness with this kid!" I'm gunna feel horrible if she does!

Someone asked me today if i was "in the family way". I was like Uh...what? she said... "are you pregnant?" i said "no.....but my cousin may be getting pregnant with my kid next month" she said " that must be it it's just ment to be! i see it on you!" i laughed and said "thank you" then i thought for a second.....SHE CALLED ME PREGNANT AND I SAID THANK YOU! SHE CAN SEE IT ALL OVER ME AND I SAID THANK YOU! doesn't that mean I'm fat? lol! uh huh! i think it does! wowsa! I'm thinkin' in the next 9 months i'm gunna be told i'm pregnant a lot... i plan on gaining the weight right along with Shannon!!! LOL RIGGHT!

alright gtg to bed... workin' at a different clinic tomarrow...... gotta get up earlier than usual! LOVE YA KIDS!

All Those Meds!

Talking to Shannon today she told me that her medications started Tuesday (June 12) and won't end for 12 weeks. I didn't realize that she had to take the meds even after the transfer of the embryos. She sent me a picture to show me how much she really had to take within 12 weeks. Crazy! What's even crazier is she had her middle child who is no older than 10 give her her shot today. Shannon said he was totally willing to do it! I guess that's good! At least she doesn't have to shoot herself in the arm right!?
I laugh because i know the feeling of all these drugs. I went through a similar regiment when I had my eggs harvested. I was a moody mess with hot flashes like a menopausal woman. I think Randy may have it easier durring the pregnancy. After shooting up her body full of hormones for 12 weeks Shannon may not be the easiest to live with. I guess we'll just have to see!

Dear Family and Friends

Welcome!
Here's a copy of our letter:

June 17, 2007

Dear Friends and Family,

I am writing you today to let you know what’s been going on in Ryan and my life recently. I would like to ask you for your thoughts and prayers during this very exciting time in our lives.

If you don’t already know I was born with many congenital heart defects and as a result I won’t ever be able to carry my own children. Five years ago I went on a medication that I will be on for the rest of my life. Before I went on this medication my doctors told me that I wouldn’t even be able to conceive and then transfer the embryo to a surrogate due to possible birth defects the meds could cause. So, before I started on the medication (at the age of 17) my parents and I started to search for a doctor that would harvest my eggs so that there would be a hope in the future of children. I found a doctor in Los Angeles and the summer before my senior year of high school. I was lucky enough to have already been dating Ryan who made this hard time in my life so much easier. When we harvested my eggs the doctor told us after the eggs had been frozen for 5 years the chances of getting pregnant drops to nearly nothing. We are excited to tell you that it’s been close to 5 years since then and after being married for three years we are in the middle of the process towards our dream of having children.

My cousin Shannon has unselfishly volunteered more than 9 months of her life to help us bring our dream of a family to life. Shannon lives in North Carolina and has three beautiful children of her own. Her husband Randy has generously agreed to put up with Shannon during the 9 months of her pregnancy as well.

In February Shannon and I went to LA so she could meet the doctor and have a consultation. Shannon started on hormone therapy Tuesday June 12, 2007. She will be on the hormone therapy for close to 12 weeks. Shannon truly is an answer to prayer and is a true Godsend.

In July Ryan and I will fly out to start the process of making an embryo and Shannon will be flying out shortly afterwards so that she can have two embryos transferred to her.

Ryan and I have been blessed with a very supportive family and friends and are excited to share this exciting time with everyone. We ask for your prayer during this time of uncertainty. We thank you for your support, and if you want to keep up with what is going on in our lives we have a blog. I will be updating the blog often as things progress. Please stop by and give us your support by giving your encouraging comments. http://salsersbabystory.blogspot.com/ . Thank you all for your concern and desire to know more about our situation.

Much Love,

Ryan and Rebekah