Today we arrived at UCSF at about 3:00 p.m. Aaron is in good spirits as always. He is a bit sleepy but is still able to give the staff a run for there money.
The plan is to keep him on an IV to administer a medication called Milrinone (a vasodilator that works by relaxing the muscles in your blood vessels to help them dilate (widen). This lowers blood pressure and allows blood to flow more easily through your veins and arteries). It can only be administered in a hospital and it is to strengthen his heart.
After several days on this he will have a procedure called a heart catheterization, which is done to check the pressures in his heart so the doctors can get a better understanding of what is going on. If it is established that he needs it and is approved by his cardiologist he will have a catheter implanted for dialysis due to his renal failure.
Then as they learn more we will find out more about the his dual organ transplant (heart & kidney). We know for sure that we will be going to UCLA for a evaluation by the transplant team, we are unsure when at this point.
We have so many questions for the entire team. His situation is so different from any other that so many doctors and teams will have to be involved. There are no simple answers.
We will get them as they are presented to us and based on how Aaron responds to the necessary treatments. We do know that one of us will most likely have to move to L.A. with Aaron. We are waiting and praying. It looks like Aaron and I will be here for the course of about 14 days.
I truly can’t thank you enough for all of your support through prayers, blogs and notes of love and encouragement. It feels like our whole community is really pulling for us and I know God hears our prayers, you can feel it, it’s so evident in all that is happening.
Love and God Bless,
The Tanner family
Posted: Friday, July 31st, 2009
I thought this article would be of interest to you………
It is an amazing story and definitely applies to Aaron. My prayers are with you. I have three healthy sons and am blessed that none of them have any health conditions. I can’t imagine the grief you feel. God Bless!
Girl’s heart heals itself 10 years after transplant
Story Highlights
-Hannah Clark suffered from a rare heart condition when she was a baby.
-Doctors added a donor heart to her own in a unique surgery when she was two.
-Doctors later removed donor heart and found her own heart had healed itself.
-Hannah is now a healthy 16-year-old with normal teenage aspirations.
By Atika Shubert
LONDON, England (CNN) — Hannah Clark is a 16-year-old with a shy laugh and a love of animals. She likes to go shopping with friends and dreams of a career working with children.
Teenager Hannah Clark’s heart has healed itself more than a decade after she received a donor heart.
But Hannah Clark is no ordinary teenager and her normal life today could not have been possible without a unique, life-changing heart surgery.
In 1994 when she was eight-months-old, Hannah was diagnosed with cardiomyopathy — an inflammation of the heart muscle that impairs the heart’s ability to work properly.
Hannah’s heart was failing and she needed a transplant. But instead of taking her own heart out, doctors added a new donated heart to her own when she was just two-years-old.
The so-called “piggyback” operation allowed the donor heart to do the work while Hannah’s heart rested.
But Hannah was not in the clear yet. As with any organ transplant, Hannah’s body was likely to reject her new heart and she had to take powerful immune suppression drugs.
Those drugs allowed her body to accept the donor heart but also led to cancer and yet another medical battle for Hannah that lasted for years.
Nearly 11 years after receiving the extra heart, there was more bad news: The immuno-suppression drugs were no longer working. Hannah’s body was rejecting the donor heart.
In February 2006, her doctors tried something that had never been done before: They took out the donor heart. Doctors theorized that the donor heart had allowed Hannah’s heart to rest, recover and grow back stronger.
Now for the first time Hannah’s father, Paul Clark, describes the agonizing decision the family had to make at the time: “If she’d never had it done, she wouldn’t be here.
“In the very beginning it was a 50/50 chance she wasn’t going to make the operation. But in the next one it was even greater because it had never been done before. But we had to take that risk,” he told CNN.
The doctors were right. Three years later, Hannah has no need for any drugs and has been given a clean bill of health. The operation was a success.
“It means everything to me,” Hannah told CNN after the pioneering operation. “I thought I’d still have problems when I had this operation done. I thought after the heart had been removed I thought I’d have to visit hospitals. But now I’m just free,” she said, smiling.
Dr. Magdi Yacoub performed Hannah’s original transplant and came out of retirement to perform the second.
“The possibility of recovery of the heart is just like magic.” Dr. Yacoub said at a media conference. “[We had] a heart which was not contracting at all at the time. We put the new heart to be pumping next to it and take its work, now [it] is functioning normally.”
The findings have been published in the British medical journal, the Lancet.
Hannah’s amazing recovery would not have been possible without a donor. Both Hannah’s doctors and her family made an appeal for more people to consider organ donation.
“When it happens to someone close to you or yourself, you don’t realize until then how important it is to be a donor and not to be selfish like, I need that part. You don’t need that part. Give it to somebody else that needs it,” said Clark.
“It just proves that if you can, be a donor. This can happen.”
Dr. Yacoub now advocates “presumed consent” — a policy by which anyone can be considered an organ donor unless they specifically request to opt out.
“All you are asking is please make up your own mind. Do you or do you not want to be a donor? My own family, my kids, everybody wants to be a donor. But if you don’t, then say so,” he said.
“Just please tell us what you want to do. So, presumed consent is a good thing.”
Hannah has made a full recovery and looks forward to doing what many teenagers do during the summer holidays: Work at a summer job. Her family jokes that it’s difficult to keep her from racing out the door now that she has so much energy.
For Hannah, it took the strength of two to help heal a broken heart, something she could have never done alone.
Elizabeth,
I lost my phone so I have not been able to call you. Hopefully I will get a new one today. Send me a message and let me know how you are holding up. Thoughts are with you constantly.
Love, KC
Always thinkin of you and ur amazing family, take care and my thoughts and prayers are always with you
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