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Post by Deleted on Nov 16, 2014 12:33:06 GMT -6
I was wondering how Sara is feeling. Has anyone come up with a definitive diagnosis ?
I hope she feels better, sending love and prayers her ( your, plural ) way.
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Post by samsara15 on Nov 21, 2014 5:31:34 GMT -6
She's slowly getting better, taking the diuretic. I've been trying to get her to go to a rheumatologist, but she hasn't done so yet. I think, even if that is not what her problem is, your suggestion has a lot of merit, and it ought to be checked into. I still have to do hard things, like getting into previously unopened jars and cans, with all those 'child guards', for her.
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Post by Deleted on Nov 21, 2014 11:04:51 GMT -6
She's slowly getting better, taking the diuretic. I've been trying to get her to go to a rheumatologist, but she hasn't done so yet. I think, even if that is not what her problem is, your suggestion has a lot of merit, and it ought to be checked into. I still have to do hard things, like getting into previously unopened jars and cans, with all those 'child guards', for her. I'm glad she is doing better, however ( not preaching only giving first hand advice ) if it is something of an arthritic/autoimmune condition, time is of the essence. More joint damage could be going on that you are unaware of.
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Post by samsara15 on Nov 21, 2014 11:42:03 GMT -6
I know, but I can't force her to go to anyone until she is ready to do so. I can only advise her, and hope she will do so ASAP.
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Post by Deleted on Nov 21, 2014 13:39:34 GMT -6
Good luck. By the time I found someone who could put a definitive diagnosis and name to my condition, I was begging to go. That was over thirty years ago and I've lived all those years since relatively pain free.
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Post by samsara15 on Nov 30, 2014 8:47:27 GMT -6
Next week, Sara is going to a local hospital for several hours of MRI tests; not for her benefit, but because one of her doctors is doing some research and he wants her test results to be part of his research project. They won't charge Sara's insurance for this (I hope), of course, but our tax money will pay for it, I suppose. Meanwhile she is making slow progress, maybe. Frustrating.
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Post by Deleted on Nov 30, 2014 13:43:30 GMT -6
Next week, Sara is going to a local hospital for several hours of MRI tests; not for her benefit, but because one of her doctors is doing some research and he wants her test results to be part of his research project. They won't charge Sara's insurance for this (I hope), of course, but our tax money will pay for it, I suppose. Meanwhile she is making slow progress, maybe. Frustrating. I have participated in several controlled study groups. Most were for new meds that were recently OK'd by the FDA. In my case the pharamaceudical co that manufactured the drug paid for the study. No charge to me or my insurance co. I am so fortunate to have Tricare because Rheumatology is very expensive and I've been faithfully seeing my dr every six weeks since 1986 or was it 1987 ? Anyway, a long time. I've never had a co-pay... so far. Hopefully Sarah will come away with some answers to her condition.
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Post by samsara15 on Dec 16, 2014 9:49:34 GMT -6
The doctors seem to have pretty much decided that Sara's problems are due to her heart. She does have that congenital hole in her heart, albeit she's had it for 69 years.
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Post by Deleted on Dec 16, 2014 15:43:40 GMT -6
Is she more comfortable now ?
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Post by samsara15 on Dec 23, 2014 16:08:46 GMT -6
Or getting used to it? It's hard to say. The swelling seems to be going down...slowly.
There is even some talk of sending her to see a heart surgeon in Baltimore, and surgery. I'm not sure Sara would allow them to do so. My suggestion to her is to be very cautious about agreeing to do so, and to find out all she can about the risks and recovery rates for this type of surgery.
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Post by samsara15 on Dec 23, 2014 16:08:56 GMT -6
Or getting used to it? It's hard to say. The swelling seems to be going down...slowly.
There is even some talk of sending her to see a heart surgeon in Baltimore, and surgery. I'm not sure Sara would allow them to do so. My suggestion to her is to be very cautious about agreeing to do so, and to find out all she can about the risks and recovery rates for this type of surgery.
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Post by Deleted on Dec 24, 2014 16:04:10 GMT -6
Yeah, any type of heart surgery has it's risks. No one can tell her what to do, she has to be comfortable with her decision. I wish her well.
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Post by samsara15 on Mar 4, 2015 21:18:55 GMT -6
Today we went to a heart surgeon on the North side of Baltimore, who specializes in people with her kind of heart problems. The upshot is that Sara needs to have surgery to have her heart rebuilt, or her condition will continue to worsen. They will repair the holes in her heart. Chances of dying or getting worse about 2% or so. But no rush, it doesn't go downhill that fast. So maybe she will do this in the Fall.
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Post by Deleted on Mar 4, 2015 21:43:55 GMT -6
Today we went to a heart surgeon on the North side of Baltimore, who specializes in people with her kind of heart problems. The upshot is that Sara needs to have surgery to have her heart rebuilt, or her condition will continue to worsen. They will repair the holes in her heart. Chances of dying or getting worse about 2% or so. But no rush, it doesn't go downhill that fast. So maybe she will do this in the Fall. 2% is a great chance I'd say.. My husband's niece's last child, now 2 yrs, was born with a congenital heart condition, sounds similar to Sara's.. she has a hole in her heart. She's on meds and you'd never know it seeing her run around all energetic like a normal 2 year old... They want to wait until she's around 4 before doing the surgery, that is if she continues to do well with the meds she's on. One Dr wanted to do the surgery in utero, but the thought of that petrified our niece, so they just monitored her closely.. she's a beautiful child. It's a wonder she carried the baby to full term from all the stress. Cardio surgery has come a long way, even in the last decade . My best, as always to your wife, and you as well.
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