Happy Birthday, Auntie C
Nov. 20th, 2010 09:43 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
bunchofgrapesSix years ago today someone did a wonderful thing. They donated their heart to my aunt.
My mom's side of the family has a heart condition called idiopathic hypertrophic subaortic stenosis or IHSS. It's also called hypertrophic cardiomyopathy. The characteristics of this disease are that the walls of the heart thicken, making the heart have to work harder to pump. Eventually, the walls get so thick that the heart can't pump. My aunt was diagnosed with a heart murmur when she was in her thirties. It was her old GP that realized it was something more than a murmur. We were all tested (me, my mom, my cousins) and my youngest cousin drew the short straw. The disease in him had progressed more aggressively than it had in my aunt so at the time he was diagnosed (he was 14 or 15), they told him he'd be lucky to see 18. They also told him he could not play sports (this is a disease that athletes don't know they have until they drop dead) or do anything else that causes him to exert himself. He played basketball in high school, he fathered 3 children and he'll be 38 in April. He definitely beat the odds but it's not been without some scary side effects. He was in A-Fib for quite a while. They wanted to shock his heart back into normal rhythm but he's got a clot in his heart and they were afraid if they shocked him the clot would move. They eventually did get him out of A-fib and thankfully, the clot didn't move. My aunt has been encouraging him for years to get on the transplant list but so far, he won't do it. I think though after this last scare, he's at least considering it. One of the side effects of this disease is that he can't do any kind of exercise and the medicine makes him balloon up. When I saw him back in March, I couldn't believe how big he was but it's all due to the meds and the disease. The same thing happened to my aunt.
My aunt's case was a little more extreme. She might not have had it nearly as bad initially but it went a different way for her. She was in D-fib, had to have a pace-maker (I think my cousin has one too), couldn't work, couldn't walk more than a few feet without being out of breath. Back in the mid 80's, they were told there was nothing that could medically be done. It was just a matter of time. My aunt went on the transplant list in early 2004. Her doctor was at the Cleveland Clinic in Cleveland, OH but she lived in OK. When you're on a transplant list and not in the hospital, you are always on alert and when the call comes in, you have to be on a plane as soon as possible. After several months, as her health really started to decline, the doctor wanted her in Cleveland. That way if a heart came in, there was no waiting. They have small apartments near the hospital for transplant patients so that's where she lived while my uncle stayed back in OK. He flew up there as often as he could but he needed to keep working.
We got the call that they had a donor heart in early November. I remember getting the call from my uncle and coming to the realization that my aunt could die. I don't know why it didn't hit me until then because there was always a chance she could die but that was the moment and I remember feeling numb. My aunt is the glue that holds the family together. She's the one who always has a cool head and knows how to handle every situation. She's the one who can . Without her I'm fairly sure my mom and I would be estranged by now. I spent a lot of time with my aunt and cousins growing up so we've always been close. Truth be told, the thought of losing my aunt is more painful than the thought of losing my mother. Unfortunately, there wasn't to be a surgery. We were told that once they got the heart from the donor, they realized there was a problem with it so they couldn't do the transplant. She was waiting again. I didn't see my aunt during the time she was at CC but my uncle said she could barely walk from the bed to the bathroom without being completely out of breath. He was so afraid that she wasn't going to make it that he made a deal with God: if she lived, he would give up drinking entirely.
Luckily, we didn't have to wait very long. The call came in late one night: they had a donor and it was good. So good that they had already done the surgery and she was in recovery by the time my uncle called. After the last time, he didn't want to get our hopes up like last time and then he said he was too scared to call. I was glad he did what he did because having to wait for that phone call otherwise would have been horrible.
Life definitely took a new turn after the surgery. My aunt had to carry a pharmaceutical company with her. She had to avoid sick people, potentially sick people, places where sick people might hang out. When she flew back to Cleveland for her follow-ups, she had to wear a mask. Everything was about keeping her disease free and it was a challenge. But once that new heart was beating, the change in her was immediate. The water weight went away, her color improved, but mostly, she could walk across a room without feeling like her heart was going to beat out of her chest or she was going to pass out.
It's been six years now and everything still looks good. Her trips back to the Cleveland Clinic for her check-up are yearly now. She still has to watch herself around sick people and still travels with a pharmaceutical company but she no longer has to wear a mask when she flies. She looks great, feels great and has a completely new outlook on life. And yes, my uncle kept his promise to quit drinking.
So happy birthday, Auntie C. May you have many, many more!
My mom's side of the family has a heart condition called idiopathic hypertrophic subaortic stenosis or IHSS. It's also called hypertrophic cardiomyopathy. The characteristics of this disease are that the walls of the heart thicken, making the heart have to work harder to pump. Eventually, the walls get so thick that the heart can't pump. My aunt was diagnosed with a heart murmur when she was in her thirties. It was her old GP that realized it was something more than a murmur. We were all tested (me, my mom, my cousins) and my youngest cousin drew the short straw. The disease in him had progressed more aggressively than it had in my aunt so at the time he was diagnosed (he was 14 or 15), they told him he'd be lucky to see 18. They also told him he could not play sports (this is a disease that athletes don't know they have until they drop dead) or do anything else that causes him to exert himself. He played basketball in high school, he fathered 3 children and he'll be 38 in April. He definitely beat the odds but it's not been without some scary side effects. He was in A-Fib for quite a while. They wanted to shock his heart back into normal rhythm but he's got a clot in his heart and they were afraid if they shocked him the clot would move. They eventually did get him out of A-fib and thankfully, the clot didn't move. My aunt has been encouraging him for years to get on the transplant list but so far, he won't do it. I think though after this last scare, he's at least considering it. One of the side effects of this disease is that he can't do any kind of exercise and the medicine makes him balloon up. When I saw him back in March, I couldn't believe how big he was but it's all due to the meds and the disease. The same thing happened to my aunt.
My aunt's case was a little more extreme. She might not have had it nearly as bad initially but it went a different way for her. She was in D-fib, had to have a pace-maker (I think my cousin has one too), couldn't work, couldn't walk more than a few feet without being out of breath. Back in the mid 80's, they were told there was nothing that could medically be done. It was just a matter of time. My aunt went on the transplant list in early 2004. Her doctor was at the Cleveland Clinic in Cleveland, OH but she lived in OK. When you're on a transplant list and not in the hospital, you are always on alert and when the call comes in, you have to be on a plane as soon as possible. After several months, as her health really started to decline, the doctor wanted her in Cleveland. That way if a heart came in, there was no waiting. They have small apartments near the hospital for transplant patients so that's where she lived while my uncle stayed back in OK. He flew up there as often as he could but he needed to keep working.
We got the call that they had a donor heart in early November. I remember getting the call from my uncle and coming to the realization that my aunt could die. I don't know why it didn't hit me until then because there was always a chance she could die but that was the moment and I remember feeling numb. My aunt is the glue that holds the family together. She's the one who always has a cool head and knows how to handle every situation. She's the one who can . Without her I'm fairly sure my mom and I would be estranged by now. I spent a lot of time with my aunt and cousins growing up so we've always been close. Truth be told, the thought of losing my aunt is more painful than the thought of losing my mother. Unfortunately, there wasn't to be a surgery. We were told that once they got the heart from the donor, they realized there was a problem with it so they couldn't do the transplant. She was waiting again. I didn't see my aunt during the time she was at CC but my uncle said she could barely walk from the bed to the bathroom without being completely out of breath. He was so afraid that she wasn't going to make it that he made a deal with God: if she lived, he would give up drinking entirely.
Luckily, we didn't have to wait very long. The call came in late one night: they had a donor and it was good. So good that they had already done the surgery and she was in recovery by the time my uncle called. After the last time, he didn't want to get our hopes up like last time and then he said he was too scared to call. I was glad he did what he did because having to wait for that phone call otherwise would have been horrible.
Life definitely took a new turn after the surgery. My aunt had to carry a pharmaceutical company with her. She had to avoid sick people, potentially sick people, places where sick people might hang out. When she flew back to Cleveland for her follow-ups, she had to wear a mask. Everything was about keeping her disease free and it was a challenge. But once that new heart was beating, the change in her was immediate. The water weight went away, her color improved, but mostly, she could walk across a room without feeling like her heart was going to beat out of her chest or she was going to pass out.
It's been six years now and everything still looks good. Her trips back to the Cleveland Clinic for her check-up are yearly now. She still has to watch herself around sick people and still travels with a pharmaceutical company but she no longer has to wear a mask when she flies. She looks great, feels great and has a completely new outlook on life. And yes, my uncle kept his promise to quit drinking.
So happy birthday, Auntie C. May you have many, many more!
