Do you ever feel like God puts you in the right place at the right time and you just happen to talk to the right person... I had one of those moments at the Duke Children's Radiothon last week. A little background... I spent a few hours in the morning working on the "phones". I ran into one of Jacob's nurses, Mary Jo. She was a PICU nurse for 17 years and left PICU for the "clinic" just last year. We had a very interesting discussion about the history of CHD and all she has seen. She relayed that many years ago, TGA babies were the sickest she cared for. HLHS babies were basically sent home because nothing could be done. She has seen an amazing amount of advancement in the treatment of CHD.
Later on in the day, I volunteered at the "Merchandise Sales" table, which I loved because I got the chance to talk to lots of people. Anyone who knows me IRL knows I love to talk! One woman, I'll call her, "Lynn" came up to peruse the T-shirts, and other items we were selling with the Duke Children's logo. She was wearing a shirt that said, "I got my New Heart at Duke."
Here is a part of our conversation:
Me: I like your shirt!
Lynn: Yep, 21 months now.
Me: My son is a Duke heart patient.
Lynn: I have been a Duke heart patient many years.
Me: My son has a congenital heart defect.
Lynn: So do I.
Me: Really, which one?
Lynn: Transposition of the Great Vessels.
Me: Wow. That's what my son has.
We went on to discuss that Lynn has had 5 open heart surgeries and two strokes, culminating in the heart transplant 21 months ago. She told me she was born in 1963!! This would make her around 44 years old. She had her first surgery, the Mustard, in 1975. She related she has spent a lot of time in hospitals and her health has obviously not been great. I told her that of course, Jacob had the arterial switch operation, and as she was well aware, that was the only "planned" surgery he would need barring no complications. She was off to work the phone bank, but it was a less than 5 minute conversation that I will NEVER forget. How different Jacob's life will be only because of the advances made in medicine. Dr. Jatene - we thank you & salute you!!
I believe "Lynn" to be one of the oldest living survivors of Transposition & the Mustard/Senning. I did some good ole Googling and found several people who are 35 and claim to be the oldest TGA people. I did find one 44 year old gentleman too. If anyone knows of an older one, I'd love to hear about it.
I do have another Transposition "survivor" story.... it's a good one too. I'll save it for later!
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14 comments:
That is so touching! I do believe that God puts certain people in your life for a reason, even if it's just for 5 minutes. How awesome that you happened to have such a meaningful interaction. It's always intriguing to me to see how old people are when they received the "old-fashioned" surgeries and care. Our little peanuts will be 70 and chugging along! :)
Thanks for sharing that - it is so amazing! What amazes me is that she survived with TGA until 1975! Jacob would have died without surgery before he was 2 weeks old.
These surgeons sure are amazing and we do have a lot to thank them for.
GoofyJ:
She had either an ASD or VSD. Since my Jacob had neither, he wouldn't have made it 2 more hours without the intervention he had.
Wow! That is amazing! I also believe that we are put places for a reason. I am so glad that you had the opportunity to meet "Lynn" and see what miracles have happened and continue to happen in the CHD world.
Hugs,
Samantha
Hi, hi, oh hi!! I'm soooooo glad to have found you guys!! My son was born with TGA in December of 2001 and I have always wanted a community of moms to connect with! I don't have a blog, but I can make one and I would so love to join your community!!! You have connected with several moms and I read their blogs, too, and I am so thrilled! I'd really like to e-mail you and share my experiences, my son is five and doing so well...maybe I can share some things with you, too, since I'm a teensiest farther down the path...I'm so glad to "meet" you!! I'll be checking back, and when I have a minute I'll whip up ;) a blog to join you girls!!
Sincerely
Marla, mom to Daniel (and a few others)
I've added an "Email Me" button to my blog, just for Marla! Hope to hear from you!
Hi! I'm a 31-year old survivor of TGA (with a VSD), had the senning in 1978, and all is well (aside from needing to take off a few pounds, but that's a work in progress!). I vaguely recall my old cardiologist saying that the oldest TGA patients were about 10-15 years ahead of me, which would certainly make Lynn one of the oldest. I know I was the LAST senning done at my hospital before they changed to the arterial switch. I was doing some googling to see who else of my "vintage" is out there, and found this blog--I'll definitely be adding it to my feeds!
My personal goal is to be the first TGA centenarian--aside from the obvious I actually have pretty healthy/long-lived genes! For those of you with younger ones going through this, I thought I'd let you know that I'm in fine shape and lead a pretty much unrestricted life that's included lots of travel and fun. One of the things I'm most proud of is when I climbed a (small!)portion of the Great Wall of China in 2006.
On the non-physical note, I am happily married and have a great job as a university librarian. I certainly will never be a jock, and my 5th gear is most people's third when it comes to walking or running, but I can do everthing anyone else can--just a mite slower.
That's not to say it hasn't presented a few challenges--in additon to the obvious joys of being the eternal last pick in gym class, I've known since I was in my early teens that it would probably be a bad idea to get pregnant (before you worry, that may just be a mustard-specific thing). Also, survivors of CHDs have increased risks for depression and anxiety attacks, partially because of the obvious emotional issues, but also because they're now finding that spending any length of time on bypass can mess with the brain's seratonin receptors. In practice that meant my teenage years were just a bit more angst-ridden than some.
Basically the point of the above stuff is to let you know that Lynn's not an aberration, we're out here leading normal (and therefore invisible) lives, and there's no reason your kids shouldn't have the same experience. If you'd like to talk more offline, feel free--I'm oklibrarian AT gmail.com.
And I forgot to mention--my Birthday is February 14. Does Somebody have a sick sense of humor or what?! :-)
Sarah:
Great to "meet" you! That's hilarious about your birthday! By the way, I'm 32, so we are close in age.
Look forward to getting to know you!
Hello,
I am also a TGA suvivor from 1976 and had the mustard surgery. All has been well. I have had a pacemaker for 30 years. How long are do we normaly live?
Thanks!!
Very interesting these stories. I miss a sort of Mustard survivor forum on the web. Or is there? I didn't found it.
Mine is done in '79, this year I will turn 30...
Hi all, I am a 42 y.o. TGA survivor from New Zealand. (Currently waiting for a transplant) I had my Mustard in 1969. I have discovered that there is a very small number of TGA'rs over 40, but I do believe the first child to ever have Mustard in 1964 is still alive. If any one here uses facebook, there is an excellent TGA group on there http://www.facebook.com/group.php?gid=5437197153 Quite a lot of Mustards there too. Feel free to friend me. Cheers Stu.
Hello - my husband is 36yrs almost 37yrs and had his mustard in 1977 (at 5yrs old) in Houston, TX by Dr. Cooley and Dr. Mullins. He is doing wonderfully with no issues at this time. Although, he did marry a cardiac nurse..hehe. I know he will be so happy to hear about the facebook connection.
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