revolutionex
02-09-2009, 06:12 AM
I have a friend, Justin, who is 20 years old. His mother has diabetes and was told she was not supposed to have a child, but she did anyway.
Because of this he had open heart surgery after he was born. Here's a brief description of his surgeries he had and the age at which he had them, and various issues that were fixed:
Born:
Only 3 chambers being used with the heart, lower left ventricle not used and not complete.
Aorta connected to wrong chamber.
Tricuspid valve not fully formed and malfunctioning.
6 Months:
Temporary stint put in place to stop 1st arterial collapse on the aorta.
3yo:
Main Surgery…
Aorta repositioned on proper chamber.
Angioplasty used to complete lower right ventricle and put back into use
Tricuspid valve repaired as best as possible, however still 30% leakage back into heart.
15yo:
Left lung only receiving 30% of total blood capacity.
Cardiac catheterization performed to place a 2nd stint in the aorta to increase amount of blood flow to left lung.
20yo (present):
Problems with keeping blood pressure under control in respect to outside influences; moves from high to low much like a roller coaster, very erratically.
Some irritation/minor pain around stint area after a lot of activity or when blood pressure goes high.
He also reports having noticeably lower energy than he did 2 years ago. He is without health insurance and has not had an echocardiagram in at least 2 years.
Cold medicines are affecting him when he gets sick, so that regular types lower his blood pressure from drowsiness and non-drowsy has caffeine which drives it up. He is also 98 pounds, though he eats tons of food, so he only takes half of the recommended dosage of cold medicines.
He is also missing a kidney, or it is non-functional.
I'm just wondering how common this condition is, if there is a way it can be further fixed or improved so that his blood pressure does not fluctuate so erratically and perhaps is there a way to somehow increase his energy???
I worry about him on a daily basis and if he'll be okay, particularly since he does not currently have health insurance....how serious is this situation, if left unchecked??
How long might he live, given he was born in 1988 with those medical procedures???
Someone please answer some of these questions if possible, I've had several panic attacks just worrying about him....
Because of this he had open heart surgery after he was born. Here's a brief description of his surgeries he had and the age at which he had them, and various issues that were fixed:
Born:
Only 3 chambers being used with the heart, lower left ventricle not used and not complete.
Aorta connected to wrong chamber.
Tricuspid valve not fully formed and malfunctioning.
6 Months:
Temporary stint put in place to stop 1st arterial collapse on the aorta.
3yo:
Main Surgery…
Aorta repositioned on proper chamber.
Angioplasty used to complete lower right ventricle and put back into use
Tricuspid valve repaired as best as possible, however still 30% leakage back into heart.
15yo:
Left lung only receiving 30% of total blood capacity.
Cardiac catheterization performed to place a 2nd stint in the aorta to increase amount of blood flow to left lung.
20yo (present):
Problems with keeping blood pressure under control in respect to outside influences; moves from high to low much like a roller coaster, very erratically.
Some irritation/minor pain around stint area after a lot of activity or when blood pressure goes high.
He also reports having noticeably lower energy than he did 2 years ago. He is without health insurance and has not had an echocardiagram in at least 2 years.
Cold medicines are affecting him when he gets sick, so that regular types lower his blood pressure from drowsiness and non-drowsy has caffeine which drives it up. He is also 98 pounds, though he eats tons of food, so he only takes half of the recommended dosage of cold medicines.
He is also missing a kidney, or it is non-functional.
I'm just wondering how common this condition is, if there is a way it can be further fixed or improved so that his blood pressure does not fluctuate so erratically and perhaps is there a way to somehow increase his energy???
I worry about him on a daily basis and if he'll be okay, particularly since he does not currently have health insurance....how serious is this situation, if left unchecked??
How long might he live, given he was born in 1988 with those medical procedures???
Someone please answer some of these questions if possible, I've had several panic attacks just worrying about him....
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majoeli
02-12-2009, 03:17 PM
I just read your information concerning your friend and first want to commend you for caring so much. Please don't over worry, like you say because some things are just too big for us and we do what we can do and then hope for the best. Your friend must appreciate you greatly. The reason I noticed your post is because I am having the same problem with my blood pressure going high and low and have seen so many different doctors that I feel like a hypochondriac because not much is found. So even if your friend had many doctors it doesn't mean they would be able to fix it right away. I am now doing some other tests with cardiologist and hopefully I get some answers. Right now I am wearing a holter monitor and will be getting an echo tomorrow. If I learn anything I will get back to you. In the meantime get some funny movies and watch them with your friend and enjoy life now. I wish you the best!!
scmmom
05-14-2009, 12:57 AM
I also suffer from erratic BP - one day it's 138/92, the next it's 92/46. Can't make any connections with my meds/supplememts, etc. I have very severe chronic fatigue and fibromyalgia, both of which I've had for years. The berzerk BP is a new thing = just in the last two months or so, No clue what's causing it. I've been debating seeing a cardiologist.
Any thoughts/recommendations?
Thanks
SCMMOM
Any thoughts/recommendations?
Thanks
SCMMOM
majoeli
05-15-2009, 10:58 PM
After seeing the cardiologist he confirmed that my heart is fine and the high and low blood pressure is not coming from my heart. He told me to find out where it is coming from so I also saw a pulmonary doctor because I do have asthma. The Endocrinologist found me extremely low in Vitamin D and put me on prescription dose, 50,000IU every day for two weeks and now twice a week. This is the only thing that has given me some energy back and my blood pressure seems more normal now. It took three weeks to notice a change but what a change it is. I have not found out anything else from all the other doctors I've seen. My husband calls me the mystery illness. Hope you can get some help. I also have had fibromyalgia for 30+ years now. Let me know if you find out anything. Maryann