I don't know how to write this. That is part of the reason I
held it back before and have been holding it back. I've been told I
sugar-coat my posts then wonder why people don't understand the
seriousness of what Izzy is going through. I'm not sure I
sugar-coat, but I clearly don't put everything out here in stark
terms. If you understand medical jargon, I'm sure you when you read
the terms "aneurismal right ventricle" and decline in "left
ventricular function", you knew that Izzy's heart is sicker than we
expected. Of course, anyone can understand when I said that the
doctors are afraid there is nothing to do for Izzy's heart, but I
feel like I've said that a million times and Izzy still appears to
be doing seemily well. The problem is looks are deceiving. And, of
course, I do hold back, especially the last couple of weeks,
because I wasn't sure how I felt and I certainly didn't want to
have to explain things to others until I knew how I felt. (In fact,
I've been holding this post as a draft since immediately after
writing the last post Monday night, but I've been holding back. I
can't hold back any longer because I've had so many people ask
what's wrong with me, but I didn't want to tell it piecemeal and
turn out like a game of telephone.)
On Monday, January 28, 2013, we were told that it was likely the
doctors would not be able to find anything they could do to fix
Izzy's heart. They still plan to look further, put their heads
together and decide the best path forward, but we were told there
wasn't a lot of hope for fixes. I know I said all of this in the
update from that day.
What I didn't say in that post is that we were told for the first time that two steps down the road is considering Izzy for a heart transplant. That word has never been used with us. Ever. And if you've never met a person who had a heart transplant before, you might be thinking to yourself "that's great news! a possible fix for Izzy!" But it's not great news. We are not happy about running out of options to keep Izzy's own heart where it belongs--in her chest beating, circulating blood, and keeping her alive. A heart transplant does mean a better chance at life, more time, more hugs, more giggles, and more smiles, but it also means trading one disease for another. It means a lifetime of anti-rejection medications, greater immunosuppression, heart biopsies, and even more care and medications than what Izzy receives now. And that is only if she is lucky enough to qualify for a heart transplant and she receives one that matches her and she survives long enough to receive it.
Approximately 18 people die each day waiting for organ transplants because most people choose not to donate their organs after they die. And countless other people needing transplants are never even listed for an organ because they do not qualify due to other complications like damage to other organs, born with multiple problems, don't have home support to take care of them, or any other of a myriad of reasons. With so few organs available, many people are turned away (allowed to die without all available tools to fight).
Of course, Izzy has not gone through any screening yet and this is still two steps down the road and we don't know if there is a bend in the middle. This is only an indication of how potentially serious Izzy's heart problems are right now. It is possible that when they go into the cath, they will find an easy answer. That is one of the reasons the doctors are presenting Izzy to the board before the cath--to brainstorm and determine all other alternatives and possibilities. The doctors have not decided what Izzy needs or what options are available, but transplant is one of the options being considered.
Part of me is happy to know the doctors are not going to give up on her, which is what I thought they were doing before. Another part of me is very worried that Izzy does need this and she will not be qualified due to the anatomy of her lungs or pulmonary arteries or because of the 22q11.2 deletion syndrome, or a combination of the above. The more complicated the medical history, the less likely to get a transplant because there are so few organs to go around. I'm not a fool. I can't pretend all of Izzy's extra complications don't matter when so many other kids need hearts as well and so few people are donors.
So, now you know where we are at. The doctors are preparing us for potentially drastic steps. Please don't tell us congratulations. Please don't say everything will be okay. Please understand we are relieved there are finally some explanations, but anxious, petrified, and morose all at the same time. Please do hug your loved ones close, tell them you love them, and be good to yourself. Life is too short for anything less.
And if you want to do something for us, become an organ donor and tell your family and friends about your decision because, ultimately, they are the ones who will have to carry out your wishes. And in their darkest hour, it will help them to know exactly what you wanted. The best gift you can ever give is the gift of life. You know this if you've ever held a newborn baby. Just imagine if your last gift to this world was saving the lives of several other people. That is organ donation.
What I didn't say in that post is that we were told for the first time that two steps down the road is considering Izzy for a heart transplant. That word has never been used with us. Ever. And if you've never met a person who had a heart transplant before, you might be thinking to yourself "that's great news! a possible fix for Izzy!" But it's not great news. We are not happy about running out of options to keep Izzy's own heart where it belongs--in her chest beating, circulating blood, and keeping her alive. A heart transplant does mean a better chance at life, more time, more hugs, more giggles, and more smiles, but it also means trading one disease for another. It means a lifetime of anti-rejection medications, greater immunosuppression, heart biopsies, and even more care and medications than what Izzy receives now. And that is only if she is lucky enough to qualify for a heart transplant and she receives one that matches her and she survives long enough to receive it.
Approximately 18 people die each day waiting for organ transplants because most people choose not to donate their organs after they die. And countless other people needing transplants are never even listed for an organ because they do not qualify due to other complications like damage to other organs, born with multiple problems, don't have home support to take care of them, or any other of a myriad of reasons. With so few organs available, many people are turned away (allowed to die without all available tools to fight).
Of course, Izzy has not gone through any screening yet and this is still two steps down the road and we don't know if there is a bend in the middle. This is only an indication of how potentially serious Izzy's heart problems are right now. It is possible that when they go into the cath, they will find an easy answer. That is one of the reasons the doctors are presenting Izzy to the board before the cath--to brainstorm and determine all other alternatives and possibilities. The doctors have not decided what Izzy needs or what options are available, but transplant is one of the options being considered.
Part of me is happy to know the doctors are not going to give up on her, which is what I thought they were doing before. Another part of me is very worried that Izzy does need this and she will not be qualified due to the anatomy of her lungs or pulmonary arteries or because of the 22q11.2 deletion syndrome, or a combination of the above. The more complicated the medical history, the less likely to get a transplant because there are so few organs to go around. I'm not a fool. I can't pretend all of Izzy's extra complications don't matter when so many other kids need hearts as well and so few people are donors.
So, now you know where we are at. The doctors are preparing us for potentially drastic steps. Please don't tell us congratulations. Please don't say everything will be okay. Please understand we are relieved there are finally some explanations, but anxious, petrified, and morose all at the same time. Please do hug your loved ones close, tell them you love them, and be good to yourself. Life is too short for anything less.
And if you want to do something for us, become an organ donor and tell your family and friends about your decision because, ultimately, they are the ones who will have to carry out your wishes. And in their darkest hour, it will help them to know exactly what you wanted. The best gift you can ever give is the gift of life. You know this if you've ever held a newborn baby. Just imagine if your last gift to this world was saving the lives of several other people. That is organ donation.
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