Thank you Linsey from crazybeautifulrippys.blogspot.ca
"She had a transplant, she's fixed, right?"
It's a common misconception that when someone gets a heart transplant they are "fixed." I can definitely see how people would think that, but it's simply not true. Yes, a heart transplant can allow a person to have a much better life. It can make it so that they finally feel better, can climb stairs, run & play, or just live. Heart transplants save lives. But it's not an easy road, that's for sure. Here, I'd like to shed some light on what it's like to live in the transplant world. It's my hope that I can help others understand why there are some areas in my girls' lives that are very very different than their childrens' lives. And also why it's so important to really adhere to what some may call my "paranoia" about the things we can and cannot do.
First things first: a heart transplant (or any other organ transplant) is trading one disease state for another. Any organ transplanted into a body is perceived as a foreign object by the recipient's immune system. In order to (hopefully) prevent rejection, there must be immuno-suppressive medications on board at all times. These drugs, while they help so that the organ doesn't reject, do a lot of damage to the body's other organ systems, and also set the recipient up for any type of infection that is around them. They become very susceptible to germs, cannot have live vaccinations, and are at an extremely high risk for developing cancer. In the case of my children, these medications also cause their white blood cell counts to be off, blood pressure to be high, kidney function to be diminished (most heart transplant patients will end up needing a kidney someday), appetite suppressed, and hemoglobin to be low. They cause excessive hair growth, skin issues, gum overgrowth, and a myriad of other scary side effects that I won't even go into right now. So there are other medications added to their drug regimen to combat all the issues that the immuno-suppressant drugs cause. Being on these meds is just another situation of "the lesser of two evils".. the alternative, of course, being that the person is no longer alive.
Another common myth: once you are transplanted, that organ will last forever. False. Most heart transplants last around 10-ish years. Now this is just an average. Plenty of people live 20 years without needing a new heart, and others will need another one two years out. For some reason, transplanted hearts very easily succumb to Coronary Artery Disease, and must then be re-transplanted. Of course, they are working on getting to the bottom of this mystery, and I so hope that my children won't face a re-transplant, but chances are they will. And I don't even want to think about the possibility of having to do a kidney transplant, too, like I mentioned above. So I don't.
Germs, germs everywhere. Did you know that there are fungi that live on rosebushes (and other plants) that could kill someone with a weakened immune system? Yeah, neither did I till I had two kid with transplants. Or how about birds and reptiles-full of salmonella and other unmentionable creepy-crawlies. Public pools? *Shudder* Not for my kids-I'd be better off letting them swim in the toilet. School, of course, is a necessary evil. But the thought of all those un-vaccinated kids with runny noses, chicken pox, whooping cough, etc. is enough to make me want to run for the hills and home-school my kids, Duggar style. But being as I have zero patience to teach a special-needs kindergartener, and I want my kids to have a meaningful education, I suck it up and send them to school. With hand sanitizer. And a bubble wrap suit. Just kidding. (Wouldn't that be cool, though?!?! Ha ha.)
Constant monitoring and doctor's visits. When was the last time you had to bring your 6-year-old to have a bone scan? What's your three-year-old's resting blood pressure? How's your daughter's fluid status today? Don't know? To all of the above, I say: been there, done that. Every single organ system is monitored in a transplant patient. Most heart transplant patients even have to have heart catheters done frequently, where they are put under anesthesia and a catheter is threaded through the groin up into the heart to study heart pressures, the state of the coronary arteries, heart function and the like. Sometimes they take biopsies. Many, many children who have heart problems and/or transplants are developmentally delayed or disabled, which brings speech clinicians, special education teachers, occupational and physical therapists to the table. My 6-year-old could direct you around the Mayo Clinic. It's just a fact of life for us.
Still think transplant's a permanent fix?
In no way do I mean to gripe and groan about transplantation. If not for transplants, and organ donors, neither of my children would be alive today. I am a tireless advocate for organ donation. I will never rest. We are absolutely and totally blessed with our two beautiful girls. They are miracles, and testaments to why organ donation is a wonderful, fantastic and magical thing. It's just that it's not an easy road to travel. Is it worth it? You bet. I'd choose the same road again and again if it meant that I can have my kids here to drive me crazy till I am an old, senile woman. They are both doing extraordinarily well. They live their lives as normally as possible, and that's what matters. They'll never be the same as their peers. We have basically fought for every single aspect of everyday living that most take for granted. That's ok, though, because it has made us open our eyes to the blessings that surround us. We really have stopped to smell the roses. We just don't touch them. Fungus on the rosebushes, ya know.
First things first: a heart transplant (or any other organ transplant) is trading one disease state for another. Any organ transplanted into a body is perceived as a foreign object by the recipient's immune system. In order to (hopefully) prevent rejection, there must be immuno-suppressive medications on board at all times. These drugs, while they help so that the organ doesn't reject, do a lot of damage to the body's other organ systems, and also set the recipient up for any type of infection that is around them. They become very susceptible to germs, cannot have live vaccinations, and are at an extremely high risk for developing cancer. In the case of my children, these medications also cause their white blood cell counts to be off, blood pressure to be high, kidney function to be diminished (most heart transplant patients will end up needing a kidney someday), appetite suppressed, and hemoglobin to be low. They cause excessive hair growth, skin issues, gum overgrowth, and a myriad of other scary side effects that I won't even go into right now. So there are other medications added to their drug regimen to combat all the issues that the immuno-suppressant drugs cause. Being on these meds is just another situation of "the lesser of two evils".. the alternative, of course, being that the person is no longer alive.
Another common myth: once you are transplanted, that organ will last forever. False. Most heart transplants last around 10-ish years. Now this is just an average. Plenty of people live 20 years without needing a new heart, and others will need another one two years out. For some reason, transplanted hearts very easily succumb to Coronary Artery Disease, and must then be re-transplanted. Of course, they are working on getting to the bottom of this mystery, and I so hope that my children won't face a re-transplant, but chances are they will. And I don't even want to think about the possibility of having to do a kidney transplant, too, like I mentioned above. So I don't.
Germs, germs everywhere. Did you know that there are fungi that live on rosebushes (and other plants) that could kill someone with a weakened immune system? Yeah, neither did I till I had two kid with transplants. Or how about birds and reptiles-full of salmonella and other unmentionable creepy-crawlies. Public pools? *Shudder* Not for my kids-I'd be better off letting them swim in the toilet. School, of course, is a necessary evil. But the thought of all those un-vaccinated kids with runny noses, chicken pox, whooping cough, etc. is enough to make me want to run for the hills and home-school my kids, Duggar style. But being as I have zero patience to teach a special-needs kindergartener, and I want my kids to have a meaningful education, I suck it up and send them to school. With hand sanitizer. And a bubble wrap suit. Just kidding. (Wouldn't that be cool, though?!?! Ha ha.)
Constant monitoring and doctor's visits. When was the last time you had to bring your 6-year-old to have a bone scan? What's your three-year-old's resting blood pressure? How's your daughter's fluid status today? Don't know? To all of the above, I say: been there, done that. Every single organ system is monitored in a transplant patient. Most heart transplant patients even have to have heart catheters done frequently, where they are put under anesthesia and a catheter is threaded through the groin up into the heart to study heart pressures, the state of the coronary arteries, heart function and the like. Sometimes they take biopsies. Many, many children who have heart problems and/or transplants are developmentally delayed or disabled, which brings speech clinicians, special education teachers, occupational and physical therapists to the table. My 6-year-old could direct you around the Mayo Clinic. It's just a fact of life for us.
Still think transplant's a permanent fix?
In no way do I mean to gripe and groan about transplantation. If not for transplants, and organ donors, neither of my children would be alive today. I am a tireless advocate for organ donation. I will never rest. We are absolutely and totally blessed with our two beautiful girls. They are miracles, and testaments to why organ donation is a wonderful, fantastic and magical thing. It's just that it's not an easy road to travel. Is it worth it? You bet. I'd choose the same road again and again if it meant that I can have my kids here to drive me crazy till I am an old, senile woman. They are both doing extraordinarily well. They live their lives as normally as possible, and that's what matters. They'll never be the same as their peers. We have basically fought for every single aspect of everyday living that most take for granted. That's ok, though, because it has made us open our eyes to the blessings that surround us. We really have stopped to smell the roses. We just don't touch them. Fungus on the rosebushes, ya know.