Patient on Ventilator for 10 days

    • September 20, 2019 at 11:26 am

      My aunt was diagnosed with GBS on September 10th. By September 11th she was on a ventilator in the ICU and started receiving plasmapharesis. She has been in the hospital 12 days. The treatment has made no change. If anything she is worse. We were denied IVIG because they said it wouldn’t be beneficial to her. They are putting in a trach and feeding tube today and moving us to a different place on Monday. They keep saying its to do therapy until she gets better. They keep saying it takes awhile and I understand that but my question is has anyone had experience with someone on a vent and transfered away when no progress has been made at all. I understand this takes a really long time but we are worried because she is 74 years old and hasn’t shown any signs that she is going to be ok 🙁

    • September 23, 2019 at 7:42 pm

      Hi Barbara – its very hard to give a right answer here. Recovery/Improvement is unique to each individual and everyone recovers at a different rate. When I was diagnosed 6 years ago I was 32 so significantly younger, ventilator was not required but I was unable to walk, use my arms, hands for a number of months.

      Each Neurologist I spoke with had the same message, yes if you are younger the odds of a faster recovery are in your favor but each case is unique in itself and boils down to a number of factors, it still took me 12-18 months to get back to somewhat normal. I have read and seen stories of people being ventilated for a much longer time than 12 days, sometimes weeks/months. Don’t give up hope, recovery can be painfully slow and she is still in what some would call the “acute” phase of the illness. Quoting from an online article

      “weakness can take half a day to over two weeks to reach maximum severity, and then becomes steady. In one in five people, the weakness continues to progress for as long as four weeks”