I am so thankful you came out on the other side of this. I hope that your recovery goes well, and that it's all up hill from here. Love to you and your family.
Oh no! I bet finding out what happened to you after he left was a nightmare moment for him, too- it is awful that you were alone for that. I'm glad that people who love you have been able to stay close since- it makes such a difference in recovery. <3
I'm really sorry you are missing your kids, though- that's tough. Have you been able to talk to them at all?
I know how scary and dangerous MG can be. And how little the medical community knows about it.
May I ask what your treatment is?
They started me on IVIG right away which has been very helpful. They also increased my steroids that I had slowly been weaning down from.
Will you continue the IVIG treatments on a regular basis? My dad has MG and I am his primary care giver. It was a struggle finding a good dr. who specializes in MG but once we did things got so much better. He was on a feeding tube for 2 years until we found her. Solaris, IVIG, and steroids have saved him.
I need ham like water Like breath, like rain I need ham like mercy From Heaven's gate Sometimes ham salad or casserole or ham that’s free range, all natural I need ham
They started me on IVIG right away which has been very helpful. They also increased my steroids that I had slowly been weaning down from.
Will you continue the IVIG treatments on a regular basis? My dad has MG and I am his primary care giver. It was a struggle finding a good dr. who specializes in MG but once we did things got so much better. He was on a feeding tube for 2 years until we found her. Solaris, IVIG, and steroids have saved him.
I'm glad you are feeling better.
I really don’t know. I meet with my actual neuro tomorrow I believe. Up until now it’s been the ICU neuros and any attendings.
I’m so glad your dad found a treatment that works for him!
Oh no! I bet finding out what happened to you after he left was a nightmare moment for him, too- it is awful that you were alone for that. I'm glad that people who love you have been able to stay close since- it makes such a difference in recovery. <3
I'm really sorry you are missing your kids, though- that's tough. Have you been able to talk to them at all?
We’ve been able to FaceTime at least once a day since I was removed from the vent. Even on the vent I was fully conscious so I could send texts here and there when I had some energy.
Post by wanderingback on Oct 18, 2021 20:41:12 GMT -5
Be gentle on yourself. PTSD and other mental health concerns happen to many people who have ICU stays. Reach out for support if you need it. I hope you continue to improve. I’ve had a few patients with myasthenia gravis over the years and treatment has really helped if they get in for care before reaching crisis point. I hope you have a good treatment care and plan going forward to make you feel more comfortable.
Oh no! I bet finding out what happened to you after he left was a nightmare moment for him, too- it is awful that you were alone for that. I'm glad that people who love you have been able to stay close since- it makes such a difference in recovery. <3
I'm really sorry you are missing your kids, though- that's tough. Have you been able to talk to them at all?
We’ve been able to FaceTime at least once a day since I was removed from the vent. Even on the vent I was fully conscious so I could send texts here and there when I had some energy.
You were awake!! I was on a vent for 8 days. I was only awake for maybe 4 hours on it and it was the worst experience of my life. I could not imagine days being awake. You are amazing.
We’ve been able to FaceTime at least once a day since I was removed from the vent. Even on the vent I was fully conscious so I could send texts here and there when I had some energy.
You were awake!! I was on a vent for 8 days. I was only awake for maybe 4 hours on it and it was the worst experience of my life. I could not imagine days being awake. You are amazing.
People keep saying that. I didn’t realize being knocked out was an option, i would have taken it! Truthfully though the first 12-24 hours was a nightmare. Once I learned to stop trying to breathe on my own and “fight it” and just let it do it’s thing, it wasn’t as bad. I was restrained for the first day or so, so that part was really scary and made communicating very difficult. Overall I would say it was pretty traumatic and i just can’t even imagine how many people have had to suffer through it over the last year and a half without a loved one at their side. Truly, makes me sick to my stomach.