My sister has this disease also and she recently passed out from swelling so much. She was hospitalized for two weeks while they tried to figure out what was wrong. They finally got the swelling in her leg and arm to go down but she is now acting very confused. Anyone ever heard of anything like this?
Yes, you're right. It is affecting her bp as well. Thanks so much to everyone. Your comments surely help put me back in a good space about her. She's seeing her cardiologist regularly since her son has taken over helping take care of her. She's also going to Amyloidosis in this region so I am so grateful about that too. You may remember back a while that my siblings didn't want to accept that this disease is real and can have a fatal impact if not addressed. Oh, Theresa I'm so very grateful that my family is finally paying attention. At least, some are. But, God is good! and prayer changes things!
I wonder what her blood pressure was prior to her passing out. Maintaining blood pressure and fluid balance can be tricky. If too much fluid is removed it could cause her to be bypotensive leading to confusion and passing out. My dad was on dialysis for 3 months prior to his death. If they removed too much fluid during his treatments, he would develop confusion, low blood pressure and be at risk of passing out. A too aggressive approach with diuretics could have the same effect. It is important to share her experience, in case that was her issue so it could be avoided in the future.
Has your sister experienced passing out and confusion after severe swelling from amyloidosis?
I'm really sorry your sister went through that scary experience. Swelling is a common symptom in amyloidosis, especially when amyloid deposits affect the heart or kidneys.
When amyloid builds up in the heart, it can make the Show Full Answer
God bless you and your family Raine. I forgot for a while that God was there for us all the time and my sister’s Amyloidosis was treated in time for the medications to help her. I miss my brother but if it hadn’t been for his diagnosis we would’ve never known about this disease.
My siblings don’t want to get tested. I did when our mother tested positive for gene in 2019. She passed away in 2020. I recognized I was experiencing some of her earlier symptoms so I took the genetic test and it came back positive for V122I - HATTR. Even when they know that they have. 50% of having the gene. There Reb5!of us left now and I truly pray 🙏🏽 that I am the only one.