Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)
Geplaatst: vr nov 10, 2006 1:17 am
Hi Folks
Just updating you on how things are going for me.
I had an echo last week, it had been 6 months since last echo and 12 months since diagnosis.
My EF is the same at about 25. Since last echo, the size of my left ventricle is the same when relaxed (I think about 75mm) but slightly smaller when contracting.
I was pretty disappointed as medical opinion is that most improvement is seen in the first 6 months of medication, with only a 10% possibility of improvement after that. I know you advise that the protocol can take about 2 years but I assume one would see gradual improvement in that time? My EF has remained the same so far.
There was something small to be excited about. My left atrium has decreased in size (it had been slightly enlarged due to back pressure from LV) and also the valves between it and the left ventricle seem to be working a bit better. The valvular regurgitation has been downgraded from a level 2/3 to level 1/2.
So that is indeed good news. I still have a tiny hope that my LV may improve a bit yet, that maybe the less damaged parts of my heart are recovering first, but I really don't know if this is how it works.
Generally, I'm feeling OK. I don't feel as though my symptoms have worsened. I do battle fatigue but again, I'm sure I'd feel tired without CHF as most mothers of preschool children do.
By the way, I researched the two forms of alpha lipoic acid and from what I can tell, S-alpha lipoic acid (S-ALA) is the synthetic form and R-alpha lipoic acid (R-ALA) is the natural form. Most preparations available in Australia are a combination of the two forms, about 50:50 , but you can buy 100% S-ALA or R-ALA. Apparently the R-ALA is about twice as effective as the S form as it is better absorbed. It is also more expensive. Sorry I don't have weblinks for this as I researched a while ago. If you need them I can find them.
I have switched to 200mg of R-ALA, but wonder if you think that's too much and I could halve the daily dose.
I hope all is well with you folks. Look forward to hearing from you soon,
Sharon xx
Just updating you on how things are going for me.
I had an echo last week, it had been 6 months since last echo and 12 months since diagnosis.
My EF is the same at about 25. Since last echo, the size of my left ventricle is the same when relaxed (I think about 75mm) but slightly smaller when contracting.
I was pretty disappointed as medical opinion is that most improvement is seen in the first 6 months of medication, with only a 10% possibility of improvement after that. I know you advise that the protocol can take about 2 years but I assume one would see gradual improvement in that time? My EF has remained the same so far.
There was something small to be excited about. My left atrium has decreased in size (it had been slightly enlarged due to back pressure from LV) and also the valves between it and the left ventricle seem to be working a bit better. The valvular regurgitation has been downgraded from a level 2/3 to level 1/2.
So that is indeed good news. I still have a tiny hope that my LV may improve a bit yet, that maybe the less damaged parts of my heart are recovering first, but I really don't know if this is how it works.
Generally, I'm feeling OK. I don't feel as though my symptoms have worsened. I do battle fatigue but again, I'm sure I'd feel tired without CHF as most mothers of preschool children do.
By the way, I researched the two forms of alpha lipoic acid and from what I can tell, S-alpha lipoic acid (S-ALA) is the synthetic form and R-alpha lipoic acid (R-ALA) is the natural form. Most preparations available in Australia are a combination of the two forms, about 50:50 , but you can buy 100% S-ALA or R-ALA. Apparently the R-ALA is about twice as effective as the S form as it is better absorbed. It is also more expensive. Sorry I don't have weblinks for this as I researched a while ago. If you need them I can find them.
I have switched to 200mg of R-ALA, but wonder if you think that's too much and I could halve the daily dose.
I hope all is well with you folks. Look forward to hearing from you soon,
Sharon xx