Advocating
Taking care of loved ones with chronic and rare conditions is harder than I ever imagined it could be and each appointment we go to, seems to get harder. Medicine is not like it was 20 years ago. It's not even what it was like 5 years ago.
Somehow, it's morphed into an unexpected profession that is hard to count on. No matter how much I hope and wish it was different, I spend days after being disappointed in doctors. It seems its becoming the norm, not the exception.
Today was liver clinic. Nice guy mostly but was unprepared. Hadn't read anything about Spencer and his history; had no idea Spencer had a genetic disease and obviously, had never heard of it. He did the one thing I absolutely have zero patience for...he was a textbook doctor. He refused to consider that Spencer is not your normal, run of the mill, 23 year old kid. He tried every possible angle to find a 'normal' reason for Spencer's liver problems.
Do you take a lot of Tylenol? Do you smoke? Do you drink? Do you use drugs? Of any kind?
Are you under a lot of stress? Oh see...stress can elevate your liver enzymes and make it struggle!
Seriously, the entire world population is stressed and normal people don't just get liver problems from a stressful life. He has not one, properly functioning organ and they guy wants to unload us on stress.
Like a broken record, I kept saying, "He has a serious disease that is notorious for causing liver disease. A great percentage of young adults with DC need a liver transplant. We have watched his enzymes rise and fall for over a decade but now they are triple above normal and I'm not comfortable with that."
"Well, I would only call it moderately high." FYI: Normal is below 30. Spencer is 134. It's not just kind of high but whatever. I feel like he only half listened to me. While we were talking, he was surfing the internet, cramming to find scholarly articles on Dyskeratosis Congenita and liver disease. I had at least 6 articles from NIH on liver disease in patients with DC and he said, "I'm just not seeing anything that would explain liver failure."
Anyways, it was a long discussion and after examination he changed his tune.
It was a long day. Lots of labs and he did a Fibroscan to look for lesions, signs of hepatitis, fatty liver, stiffening of the liver etc. His initial, 5 second review reported that it was basically normal and fell into the 'none to mild' category which I had to ask...So did he have no lesions whatsoever or some mild lesions? That's a big deal to me! God invented us with no lesions...if there are mild lesions, something is going awry. He side stepped the answer.
So, mixed review. I really liked him as a person. He made an effort to be kind and friendly but failed to make an impression as a physician with confidence and knowledge beyond a textbook. He tried to argue a few points with me but I politely held my ground. He did look at the CT scan from last week and said, "Who is managing the gastroparesis?" So, he did recognize that Spencer appears to have a gastric emptying problem.
It's upsetting to me how I am treated in these appointments. Even my kids are noticing it more and more. Today, they said, "He hates you. He did not like you asking hard questions of him." That's true. When they realize I have done my homework, they start treating me like I have a mental illness and have nothing better to do with my time, than drag my innocent, healthy kids, kicking and screaming against their will, to the doctor's with some mysterious complaint that no 23 year old should could possibly have. They make me feel like I'm crazy and the meanest soul on earth. I am nothing like that. I never get angry, never raise my voice, never belittle them, in fact, I do way too much ego stroking.
If, on the other hand, I was in there with my 80 year old grandmother, I would be recognized as the caregiver. They would speak to me and see me as a gentle, loving, caring person with nothing but concern for my loved one. I would be seen as admirable; that I would pause my life to offer such important care. Because I'm advocating for my adult child it's different; I must have brainwashed them. This is no joke and it's not just happening to me, it's happening to my friends in similar situations.
Anyways, I don't know what the outcome of this will be. Obviously, I'm praying that the numbers are coming back down to normal and we will continue to monitor every three months...which was the doctors suggestion and I'm okay with that. If they are higher, then he said he will pursue a liver biopsy. I was impressed that one of the tests he ran today was a liver Mitochondrial panel. I didn't even bring up mito disease to him today so that I was happy to see that.
When you start looking at the whole picture, it's hard to explain away what his happening with anything but mito disease. When Spencer was 16, his gallbladder failed 100%. By the time he left on his mission, the lower of half of his legs were losing feeling. On his mission he started having heart issues with the passing out which led to the electrical system of his heart failing, now what appears to be his stomach failing to contract. It wouldn't surprise me if his liver is just plain failing and they won't find extra fat or other obvious things. It's all a big worry.
Because we love to handle bad news in multiples...Spencer suffered a massive pay cut at work. The company he works for is about 6 weeks away from folding. Today, they let go 15 employees and the ones who stayed suffered a major pay cut from salary to hourly. He will barely make enough to cover rent, utilities and food. Poor kid. He lives from blow to blow. Nothing breaks my heart more than watching him suffer like this in everything! Literally everything.
Somehow, it's morphed into an unexpected profession that is hard to count on. No matter how much I hope and wish it was different, I spend days after being disappointed in doctors. It seems its becoming the norm, not the exception.
Today was liver clinic. Nice guy mostly but was unprepared. Hadn't read anything about Spencer and his history; had no idea Spencer had a genetic disease and obviously, had never heard of it. He did the one thing I absolutely have zero patience for...he was a textbook doctor. He refused to consider that Spencer is not your normal, run of the mill, 23 year old kid. He tried every possible angle to find a 'normal' reason for Spencer's liver problems.
Do you take a lot of Tylenol? Do you smoke? Do you drink? Do you use drugs? Of any kind?
Are you under a lot of stress? Oh see...stress can elevate your liver enzymes and make it struggle!
Seriously, the entire world population is stressed and normal people don't just get liver problems from a stressful life. He has not one, properly functioning organ and they guy wants to unload us on stress.
Like a broken record, I kept saying, "He has a serious disease that is notorious for causing liver disease. A great percentage of young adults with DC need a liver transplant. We have watched his enzymes rise and fall for over a decade but now they are triple above normal and I'm not comfortable with that."
"Well, I would only call it moderately high." FYI: Normal is below 30. Spencer is 134. It's not just kind of high but whatever. I feel like he only half listened to me. While we were talking, he was surfing the internet, cramming to find scholarly articles on Dyskeratosis Congenita and liver disease. I had at least 6 articles from NIH on liver disease in patients with DC and he said, "I'm just not seeing anything that would explain liver failure."
Anyways, it was a long discussion and after examination he changed his tune.
It was a long day. Lots of labs and he did a Fibroscan to look for lesions, signs of hepatitis, fatty liver, stiffening of the liver etc. His initial, 5 second review reported that it was basically normal and fell into the 'none to mild' category which I had to ask...So did he have no lesions whatsoever or some mild lesions? That's a big deal to me! God invented us with no lesions...if there are mild lesions, something is going awry. He side stepped the answer.
So, mixed review. I really liked him as a person. He made an effort to be kind and friendly but failed to make an impression as a physician with confidence and knowledge beyond a textbook. He tried to argue a few points with me but I politely held my ground. He did look at the CT scan from last week and said, "Who is managing the gastroparesis?" So, he did recognize that Spencer appears to have a gastric emptying problem.
It's upsetting to me how I am treated in these appointments. Even my kids are noticing it more and more. Today, they said, "He hates you. He did not like you asking hard questions of him." That's true. When they realize I have done my homework, they start treating me like I have a mental illness and have nothing better to do with my time, than drag my innocent, healthy kids, kicking and screaming against their will, to the doctor's with some mysterious complaint that no 23 year old should could possibly have. They make me feel like I'm crazy and the meanest soul on earth. I am nothing like that. I never get angry, never raise my voice, never belittle them, in fact, I do way too much ego stroking.
If, on the other hand, I was in there with my 80 year old grandmother, I would be recognized as the caregiver. They would speak to me and see me as a gentle, loving, caring person with nothing but concern for my loved one. I would be seen as admirable; that I would pause my life to offer such important care. Because I'm advocating for my adult child it's different; I must have brainwashed them. This is no joke and it's not just happening to me, it's happening to my friends in similar situations.
Anyways, I don't know what the outcome of this will be. Obviously, I'm praying that the numbers are coming back down to normal and we will continue to monitor every three months...which was the doctors suggestion and I'm okay with that. If they are higher, then he said he will pursue a liver biopsy. I was impressed that one of the tests he ran today was a liver Mitochondrial panel. I didn't even bring up mito disease to him today so that I was happy to see that.
When you start looking at the whole picture, it's hard to explain away what his happening with anything but mito disease. When Spencer was 16, his gallbladder failed 100%. By the time he left on his mission, the lower of half of his legs were losing feeling. On his mission he started having heart issues with the passing out which led to the electrical system of his heart failing, now what appears to be his stomach failing to contract. It wouldn't surprise me if his liver is just plain failing and they won't find extra fat or other obvious things. It's all a big worry.
Because we love to handle bad news in multiples...Spencer suffered a massive pay cut at work. The company he works for is about 6 weeks away from folding. Today, they let go 15 employees and the ones who stayed suffered a major pay cut from salary to hourly. He will barely make enough to cover rent, utilities and food. Poor kid. He lives from blow to blow. Nothing breaks my heart more than watching him suffer like this in everything! Literally everything.
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