My Big Sister's Story by Her Little Sister

[Squish]

...in what way is Wegener's affecting her heart? Keep us informed of your sister's progress.

It is a form of cardiomyopathy. Her heart at random times is just not strong enough to pump blood through properly and it is for only a moment. It is strange but you can see it when you go look at her charts.....everything else will be perfectly fine...then suddenly her blood pressure drops drastically for a pump then starts to go back towards normal. They are still trying to figure that part out. When she wakes up they will be bringing in a cardiac specialist for her. on that one.

As for an update as to how she is doing she has been weened off the ECMO and completely off now for about 16 hours. They are waiting a full 24 hours before they even consider weening her off another support.

[Alysia]

It is a form of cardiomyopathy. Her heart at random times is just not strong enough to pump blood through properly and it is for only a moment. It is strange but you can see it when you go look at her charts.....everything else will be perfectly fine...then suddenly her blood pressure drops drastically for a pump then starts to go back towards normal. They are still trying to figure that part out. When she wakes up they will be bringing in a cardiac specialist for her. on that one.

As for an update as to how she is doing she has been weened off the ECMO and completely off now for about 16 hours. They are waiting a full 24 hours before they even consider weening her off another support.

She is getting better then. Thanks God.
It is possible that the heart is reacting to the lungs.

[Squish]

It is possible it is a reaction to the drugs but the cardiologist seems to strongly believe differently. I am not sure if there is something in her chart or history that makes him believe as such but till such time as she is off the medications that could be causing that she is notated s having a cardiomyopathy.

[gilders]

Hi Squish, if they've taken her off ECMO, hopefully that means she's improving.
The reason I asked about her heart is because I have Left Ventricular Dysfunction (my heart wobbles rather than performs a good pump). I still have no answers as to why I have this, although I suspect Wegener's is responsible in some way.
Is she still on continuous dialysis. I would have thought the initial dialysis would have removed the pleural effusion and restricted fluid intake should keep the excess fluid around the lungs down. If she has partial renal function I would have thought a few hours dialysis every day at the most would be sufficient, rather than continuous.

Hope she's showing some improvement.

[Squish]

Hi Squish, if they've taken her off ECMO, hopefully that means she's improving.
The reason I asked about her heart is because I have Left Ventricular Dysfunction (my heart wobbles rather than performs a good pump). I still have no answers as to why I have this, although I suspect Wegener's is responsible in some way.
Is she still on continuous dialysis. I would have thought the initial dialysis would have removed the pleural effusion and restricted fluid intake should keep the excess fluid around the lungs down. If she has partial renal function I would have thought a few hours dialysis every day at the most would be sufficient, rather than continuous.

Hope she's showing some improvement.

She is actually semi awake now....by semi awake I mean they still have her sedated but instead of being in a technical medically induced coma she is simply sleeping and responds when they come in to do things.

She is still on the continuous dialysis as she is producing very little urine on her own....So her kidneys are still on the wavering side of things....but her lungs are on the up and up.....another 24 to 48 hours and they will consider getting her off the ventilator and letting her try breathing on her own again.

In the mean time we take turns going in and reading some of her favorite light hearted things from growing up to her. Nothing like reading your sister through and adventure through the 100 acres woods as adults.

[drz]

Glad to hear there has been some progress. My doctors always told me if you are not getting worse, then you are getting better.

[gilders]

Hi Squish. Hope there's been some positive progress with your sister since we last heard from you.

[renidrag]

She is blessed to have you. Through all this your Sister will be in need of an advocate for her, I assume it is you. Make sure to take time to also take care of yourself. Hope she continues to progress. Love your screen name by the way.
Dale