PML

[agate]

What a shame, ANN. I hope you can arrange to get there. Maybe PML is so baffling that her husband and everyone else feels helpless. It's really a dreadful disease.

[stillstANNding]

Bbs, her husband knows what friend and docs have told him. I don't know what that is. He is managing her care by himself and trying to work PT to pay the bills. I don't know the quality of medical care but who discharges a patient w PML home after 3 plasmaphoresis treatments?? I am astounded at that. Was she supposed to monitor herself for IRIS?

ANN

[Virginia]

Ann, so very sorry to hear this latest news. Hope you can go and get more answers.

[Sunshine]

Bbs, her husband knows what friend and docs have told him. I don't know what that is. He is managing her care by himself and trying to work PT to pay the bills. I don't know the quality of medical care but who discharges a patient w PML home after 3 plasmaphoresis treatments?? I am astounded at that. Was she suppised to monitor herself for IRIS?

ANN

In my experience, if a patient does not have someone to actively advocate for them, like a spouse, child or friend, they often get substandard care.
, and sometimes die prematurely.... I have seen this time and time again.

[Virginia]

I am in agreement with BBS about having someone to advocate, however even if someone other than patient is present many times people are either awe struck or intimidated by Doctors. If Rose did not have Jon and Jim I think I would want her to come and advocate for me. I don't think many could make her back down.

[stillstANNding]

Friend was just transferred to ICU. PML "all over" brain w swelling. Getting steroids for that. Very critical.

We are flying down tomorrow.

I am so sad.

Thank you all,
ANN

[Earth Mother 2 Angels]

((((((Ann)))))) ~

Words cannot convey how very sorry I am that your dear friend is in critical condition. I am praying for safe travels for you and your husband to be at her side. I am praying for a miracle for your friend. And for peace and comfort for all of you.

Love & Light,

Rose

[agate]

How very very sad.

Everybody here will be hoping for her to pull through this crisis.

[Sunshine]

You are a true friend. To have a friend as loyal as you Are is a rare thing in life.

Almost biblical, as in Ruth and Naomi, "But Ruth replied, "Don't urge me to leave you or to turn back from you. Where you go I will go, and where you stay I will stay. Your people will be my people and your God my God."

Godspeed and we all will be thinking of you and your friend.

[agate]

I agree, ANN. There are times when a person is needed to speak up for someone, and you are being that person for your friend.

[Virginia]

Oh Ann, such sad news. I hope she is able to realize you are there with her and be comforted by just that fact. I have had her continuously in my daily prayers. I will continue to pray for the best outcome possible under these circumstances. I do not know her, but I do know that if I was going to be mentally impaired for life that would be worse than the alternative.

You and Peter take care of yourselves as well.

[SuzE-Q]

Thinking of you, ANN, and sending healing energy for your friend.

[stillstANNding]

She is only slightly responsive - to painful stimuli. She moves her L side freely and her head. Nothing on the R. She does not speak or open her eyes. I do not think she knows I am here.

Can't keep IV's in her. Failed attempt at pic line today. They will put in central line instead.

GI bleeding today fm high steroid dose.

I am glad to be here.
ANN

[agate]

Thank you for taking the time to give an update for people here. This is tragic. Let's hope she rallies.

[Earth Mother 2 Angels]

((((((Ann)))))) ~

I'm so sorry ~ Many prayers for your friend, her husband, you and her loved ones ~

Love & Light,

Rose