New here...scared and confused!

[allie628]

2 weeks ago my 18 yr old niece was diagnosed. No symptoms other than swelling of the legs and blood in her spittle 2 days before she went into renal failure. 2 days later she was on life support. She now has been weaned down from 100% to 30% on the ventaltor, some of the sedation is coming off and she is responding with her eyes. She is on dialysis and on meds for the treatment of the disease. We are all scared and unsure of the future. The drs have told us not to expect daily changes only minimal baby steps. We are grateful for each one. Right now we are just in the stages of getting her stabilized so she can tolerate the treatment. SO many unanswered questions. But reading some of the stories here have given me hope. Please say a prayer for Lauren and her team of dr's!

[drz]

2 weeks ago my 18 yr old niece was diagnosed. No symptoms other than swelling of the legs and blood in her spittle 2 days before she went into renal failure. 2 days later she was on life support. She now has been weaned down from 100% to 30% on the ventaltor, some of the sedation is coming off and she is responding with her eyes. She is on dialysis and on meds for the treatment of the disease. We are all scared and unsure of the future. The drs have told us not to expect daily changes only minimal baby steps. We are grateful for each one. Right now we are just in the stages of getting her stabilized so she can tolerate the treatment. SO many unanswered questions. But reading some of the stories here have given me hope. Please say a prayer for Lauren and her team of dr's!

Sorry to hear about your niece. Recovery can be slow but it tends to be a lot quicker for younger people. With proper treatment most people survive their initial attack of
Wegs and things slowly get better. Some times kidney function can also recover to point that dialysis is not needed anymore. hope it happens for her.

[annekat]

Welcome to the forum. I know a dx of WG is scary, especially with kidney involvement, and having your niece on life support would be extra scary. I'm glad she came through that. Many of us were dx'ed in middle age and are doing quite well after treatment. This forum is the best place anywhere for information and support for WG patients and their loved ones, and you will find much encouragement and compassion here. Keep us posted on her progress.

[Alysia]

Hi,
I am sending my praying to your dear Lauren and to all your family :hug2:
recovery in slow but possible. she is young and prob strong and blessed to have all of you around her.
I don't know much about states like the one she is in, but others here know very well and can help you.

[allie628]

Lauren is getting a trachea this afternoon and after that she won't be under heavy sedation!! She has been responding the last few days with her eyes, like following you around the room. Last night as Kelly was leaving she said "I love you Lauren, do u love me?" and she shook her head YES!!!! My brother and Kelly (only people in the room)were elated!!!!! Well we all are! Drs say the disease has taken her kidneys out permanently and a transplant is imminent(later) and that she is still critical, but they(WE) are hopeful! Drs say we have to keep moving forward! THANX FOR THE PRAYERS AND COMMENTS. How long are we talking about before she gets "better"???

[Dirty Don]

How
long are we talking about before she gets "better"???
Welcome Allie, good of you to get involved in this. Not happy about a trachea, but better than sleeping under all those drugs...I did that, wasn't fun upon waking. So, glad she's off those kinds of drugs. Now, how long? Youth is on her side, but the drugs and protocols have to be followed AND she should have WG experienced docs/advice helping her along in the correct doses and drugs. Usually, the correct drugs and doses take anywhere from a few weeks to up to a couple of months, somewhere in there, to take effect and for improvement to be noted. The doc was right in that recovery is truly composed of baby steps...best to you both.

[gilders]

I'd still hold on to some hope about her kidneys. I was diagnosed aged 17 and was on dialysis 3 times a week and plasmatheresis twice a week. My kidneys recovered very well. Admittedly, 19 years on a few relapses later y kidneys are on the brink of dialysis, but there's still hope for her kidneys.

[NikkiNicole]

My goodness how absolutely terrifying for you. This is an unfortunate welcome, but welcome to our group. You won't find a better source of information anywhere else. I second what has been stated above by Don. You MUST fight for her to have a Wegs specialist. Most doctors aren't familiar with the disease, have just "heard" of it, and may have never treated it. You must fight for her to get the best treatment.
With that, all things are possible. She is young, she has a great support system. You now have us to help support you. I will pray for a smooth recovery for her, or whatever she needs.
You will find Weg's patients are like snowflakes, no two of us are alike!!! Hence the reason this is the best place to find info ... throw a question out there and someone will know about it, experienced it, lived through it, helped someone through it, etc.
I'm sorry you are facing this, know you aren't alone. We will all be pulling and praying for Lauren.

Hugs to you,
Nikki :bored:

[allie628]

I saw Lauren yesterday with her eyes open! So happy! Thanx for the welcome, comments and PRAYERS!:rolleyes1:

[Debbie C]

Allie, I welcome you also unfortunantly under these conditions. I agree with everyone that it is VERY important to find a wg. specialist. You can look under the Vasculitsis Foundation to see if there is one close to you. Glad to hear Lauren opened her eyes.shows she is on her way to recovery but will take a long time. My prayers are with her and all of the family. Keep us posted:hug2: