Showing posts with label TGA. Show all posts
Showing posts with label TGA. Show all posts
Sunday, March 2, 2008
Story of the first ASO performed at Duke....?
The other neat story I have from the Radiothon was from a Duke employee who helps organize Radiothon. She mentioned that she has a friend that she has known for several years through sports their kids play, etc. and that she had just recently learned that the friend's 22 year old daughter, is a TGA kid and was likely the first Arterial Switch Operation recipient at Duke in 1985. Twenty two years later, she is doing very well with no complications! It's a short & sweet story, but another one that made me very happy and left an impression!
Wednesday, February 20, 2008
Story of a 44 year old Transposition Survivor...
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!
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!
Tuesday, April 24, 2007
A visit to Duke Children's Clinic
Today, we took Jacob for his 5th follow up visit since his discharge from Duke on August 16. We see Dr. Delaney, who is Jacob's pediatric cardiologist. Dr. Delaney is also an interventional catheterization specialist - he was there the morning Jacob arrived at Duke and performed Jacob's balloon septostomy along with Dr. Rhodes. Dr. Delaney also sat down with Jeff and I before Jacob's surgery and detailed Jacob's condition and surgery and let us ask questions. He is a good doctor and has a good "bedside manner." Anyway, on to the visit...
After our traditional breakfast at Elmo's, we arrived at Duke at 8:45 a.m. We were taken back for a height & weight check. Jacob's length was 28 inches and his weight was 18 lbs, 7 oz. Then, it was over to the main hospital for the echocardiogram. This was Jacob's third outpatient echo, so Jeff and I thought we had the routine down. We arrived on the 7th floor to find a sign that said something to the effect of wait by the elevators for x, y, z and peds echo. That was odd. The paper we were given at the Children's Hospital said to go to the waiting room at 7416, which is where we usually went. We walked towards the waiting room anyway, and found doors covered in plastic. Something was definitely different. We went back to the elevator area. A nice woman we'd seen on the elevator figured out we were there for a peds echo and offered to tell them we were waiting. A little later, they came out and walked us back to the echo room. The nurse explained that they had a pipe burst in the waiting room and it was being repaired. It's funny because the Children's Hospital receptionists had no idea about this.... Anyway, so we get back to the echo room, and we wait.... and we wait... and we wait. It was 10:00 a.m. before the doctor overseeing the echo labs came in to examine Jacob. He recognized him from his treatment last August and noted how great Jacob looked. This happens to us pretty frequently at Duke. Nurses & doctors that we don't necessarily remember, remember us and remember Jacob. While heart defects are 1 out of 100 babies born, transposition (a.k.a TGA) is seen about 1 in 1000, so Duke sees maybe about a TGA baby a month (a nurse told me this), so they tend to remember those patients.
Anyway, Jacob finally got the sedation medicine, chloral hydrate, about 10:00 a.m. For the next 15 minutes, he went from crying, to babbling and doing raspberries. He was quite funny. We noted he was a funny "drunk." Finally, we went to sleep about 10:20 a.m. and they began the echo. After taking echo pictures for about 25 minutes, the technician went out to discuss everything with the doctor. The nurse came back in about 5 minutes later and said we were all done. We headed back over to the Children's Clinic and were immediately taken back to the exam room since our appointment was 11:00 a.m. with Dr. Delaney.
A little later, another doctor came in. He introduced himself, but all I caught was "Roddy" was his first name. He talked to us about Jacob's last 3 months, and then went to discuss with Dr. Delaney. A little later, Dr. Delaney came in and said that the echo results were "excellant." Everything is flowing along just great. Of course, they are keeping an eye on the pulmonary artery, as well as the arteries (?) to the lungs for stenosis, but so far, so good. They were very pleased that Jacob doesn't even sound like he has a murmur on exam, which would be typical. The best news is we don't have to go back in 3 months! They told us to return in 6 months and Jacob will have another echo at that point. For probably the next 2-3 years, they will want to echo him every 6 months, but in January, he mentioned they would want to see him every 3 months in between echos, so this was good news! Dr. Delaney did mention that Jacob's weight had fallen down a notch on the growth curve, but this is likely due to Jacob crawling and becoming more active. We have Jacob's 9 month check up with his peditrician in a couple of weeks, so I'm sure we can address that then. From what I understand, that isn't all that out of the ordinary.
So, the bottom line is Jacob gets an A+ on his echo and no return for 6 months!!
He slept until 12:30 p.m., had a bottle, a little lunch around 2:00 p.m. and passed out again at 2:30. He's still asleep at 4:45 p.m.! I need to go wake him!
After our traditional breakfast at Elmo's, we arrived at Duke at 8:45 a.m. We were taken back for a height & weight check. Jacob's length was 28 inches and his weight was 18 lbs, 7 oz. Then, it was over to the main hospital for the echocardiogram. This was Jacob's third outpatient echo, so Jeff and I thought we had the routine down. We arrived on the 7th floor to find a sign that said something to the effect of wait by the elevators for x, y, z and peds echo. That was odd. The paper we were given at the Children's Hospital said to go to the waiting room at 7416, which is where we usually went. We walked towards the waiting room anyway, and found doors covered in plastic. Something was definitely different. We went back to the elevator area. A nice woman we'd seen on the elevator figured out we were there for a peds echo and offered to tell them we were waiting. A little later, they came out and walked us back to the echo room. The nurse explained that they had a pipe burst in the waiting room and it was being repaired. It's funny because the Children's Hospital receptionists had no idea about this.... Anyway, so we get back to the echo room, and we wait.... and we wait... and we wait. It was 10:00 a.m. before the doctor overseeing the echo labs came in to examine Jacob. He recognized him from his treatment last August and noted how great Jacob looked. This happens to us pretty frequently at Duke. Nurses & doctors that we don't necessarily remember, remember us and remember Jacob. While heart defects are 1 out of 100 babies born, transposition (a.k.a TGA) is seen about 1 in 1000, so Duke sees maybe about a TGA baby a month (a nurse told me this), so they tend to remember those patients.
Anyway, Jacob finally got the sedation medicine, chloral hydrate, about 10:00 a.m. For the next 15 minutes, he went from crying, to babbling and doing raspberries. He was quite funny. We noted he was a funny "drunk." Finally, we went to sleep about 10:20 a.m. and they began the echo. After taking echo pictures for about 25 minutes, the technician went out to discuss everything with the doctor. The nurse came back in about 5 minutes later and said we were all done. We headed back over to the Children's Clinic and were immediately taken back to the exam room since our appointment was 11:00 a.m. with Dr. Delaney.
A little later, another doctor came in. He introduced himself, but all I caught was "Roddy" was his first name. He talked to us about Jacob's last 3 months, and then went to discuss with Dr. Delaney. A little later, Dr. Delaney came in and said that the echo results were "excellant." Everything is flowing along just great. Of course, they are keeping an eye on the pulmonary artery, as well as the arteries (?) to the lungs for stenosis, but so far, so good. They were very pleased that Jacob doesn't even sound like he has a murmur on exam, which would be typical. The best news is we don't have to go back in 3 months! They told us to return in 6 months and Jacob will have another echo at that point. For probably the next 2-3 years, they will want to echo him every 6 months, but in January, he mentioned they would want to see him every 3 months in between echos, so this was good news! Dr. Delaney did mention that Jacob's weight had fallen down a notch on the growth curve, but this is likely due to Jacob crawling and becoming more active. We have Jacob's 9 month check up with his peditrician in a couple of weeks, so I'm sure we can address that then. From what I understand, that isn't all that out of the ordinary.
So, the bottom line is Jacob gets an A+ on his echo and no return for 6 months!!
He slept until 12:30 p.m., had a bottle, a little lunch around 2:00 p.m. and passed out again at 2:30. He's still asleep at 4:45 p.m.! I need to go wake him!
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