Hi everyone, I am 14 years post DS and have been very successful until two months ago completely out of the blue I started having swelling in my lower legs that progressed to my stomach and lower arms. Bloodwork showed very low albumin 2.2 I believe at the time, I was hospitalized for three days worth of Lasix which took off the edema but now two weeks later it is coming back even with prescription Lasix at home. My latest blood test showed my albumin had fallen to 1.9. Before this happened I had absolutely no problems getting in protein I was probably getting in close to 150 grams a day but apparently I am not absorbing it. Now that I’ve been sick I struggle with nausea and not wanting to eat so it’s a struggle to even get in 80 to 100. I had a liver biopsy two days ago so I’m awaiting those results but my liver MRI showed severe fatty liver disease. I’m scared. Before this I was an active 49-year-old woman now I’m confined to a recliner
Edema/low albumin/Liver
- Thread starter Kathyrip
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hilary1617
First time at the rodeo.
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Normal but I haven’t had them checked in a couple of years. They were always on the lower side of normal but never low
welcome, Kathy, I hope someone can figure out how to help you.
Then if you hadn’t had them checked in a couple of years, they may have been below normal for longer than you knew.
Larra
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So sorry this is happening to you! I agree with southernlady that if you didn't have your labs checked regularly for awhile, they were probably trending gradually lower and lower until you reached the point where you are now, with serious deficiencies. And once those deficiencies are significant, it's much harder to get those levels back up where they belong.
Have you discussed with your doctors a course of TPN? It could make all the difference in turning things around, and hopefully your absorption would improve once your levels are normal and all your organs, including your intestines, are healthier. TPN can be done either in hospital or at home (once you have the right IV and know how to do it) and you will feel so much better when your deficiencies resolve. Don't give up hope, and even those you may not feel like fighting right now that's what you need to do. Hopefully you also have someone else in your life who can advocate for you when you don't feel up to it, but if not, you need to gather your strength and advocate for yourself.
Have you discussed with your doctors a course of TPN? It could make all the difference in turning things around, and hopefully your absorption would improve once your levels are normal and all your organs, including your intestines, are healthier. TPN can be done either in hospital or at home (once you have the right IV and know how to do it) and you will feel so much better when your deficiencies resolve. Don't give up hope, and even those you may not feel like fighting right now that's what you need to do. Hopefully you also have someone else in your life who can advocate for you when you don't feel up to it, but if not, you need to gather your strength and advocate for yourself.
Larra
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Lasix is useful for removing excess fluid, but as long as your albumin level remains low, your capillaries will continue to leak fluid. In other words, Lasix treats a symptom but not the underlying problem. Unless you are somehow able to raise your albumin/protein levels, the problem will persist.
I know and there lies the problem!! Somehow in between my yearly labs my Albumin tanked. I’m eating as much as I can and forcing down protein shakes. Maybe yearly labs are NOT enough for us long term DS patients. I am not kidding you when I say I was easily eating 150-200 grams of protein before this happened. I could eat almost like I never had WLS. Beware fellow DS patients. I went from an active 49 year old working 2 jobs, swimming, hiking, horseback riding to someone confined to my recliner and unable to work basically overnight!!
I still get twice yearly labs. Over 7 years out and too scared to drop to once a year. I’ve tanked too fast on iron.
You might be eating enough protein but you don’t seem to be absorbing it now. That’s another avenue for you and your doctor to explore.
Right now, as often as needed. Once you are better, every 6 months does work.
