View Full Version : My Mom now in hospital with full blown Wegeners

02-10-2014, 12:47 PM
Hi -

I just joined this group a week ago with good feedback from several of you - now she has been in the hospital for basically a week - now in critical care, heavily sedated - lungs, sinuses all issues - kidneys producing problems but with the sensitive condition she is in they won't do a biopsy of that area (and since she has a horseshoe kidney on top of that) - doing steroid blasts and then start the Ritux (sp?) infusion.
Might have to drain the sinuses - and she is a MRSA carrier :ohmy: - I know she wanted to them to do procedures if they were going to help but I'm starting to get worried about that. She never had any event that resulted in loss of oxygen to brain or heart stopping, so those are two pluses.

Anyway, just updating...

They are trying to get her off of the sedation - she is finally making attempts at waking up and I was there for that today. She made eye contact, physical movement to commands, squeezing hands about 4 different occasions.
My main concern right now is that if she can't breathe on her own, then a tracheotomy would need to be done after 10 - 14 days on the tube as that long on a ventilator is permanently damaging to the vocal cords.
The WG has definitely scarred her lung tissues so when she tries to make efforts to cough, it's not a cough that has anything to suction off.
It's amazing how little they know about this though - even today they were mentioning something about "TB indicators" - at least being armed with more knowledge I can say confidently - "Nope, that's the Wegener's!"

02-10-2014, 01:16 PM
Hi MEustace, Sorry to hear that your Mom ended up being admitted and is in ICU, however, that is probably the best place for her to get the correct and immediate treatment she needs. I sure they will want her stabilized before they attempt any biopsies. As far as being a MRSA carrier my Dad was and my Mom is. Luckily the only thing they got out of it was a private room at the hospital when they had to go. Just extra precautions. Is she in a local hospital or Johns Hopkins? Did her Rheumy admit her or did you end up taking her to the ER. You said that she has issues in her lungs, did they finally do a CT? If you don't feel like answering that's ok I understand. It's a scary time for you and your family. It sounds like your Mom is getting the correct treatment so that is good. My prayers are with all of you and here is a little hug. :hug2:

02-10-2014, 02:07 PM
She is in local hospital - and the staff and care has been terrific.
The hematologists ended up being the ones to admit her - it was fortunate. She has had her 2nd CT this evening - to check on her sinuses. If further infection there they will have to drain.
Her lung xrays were pretty bad - the 2nd one showed some clearing from the original - but pretty gray and cloudy.
Thanks -

02-10-2014, 03:01 PM
I'm glad she is in the right place to get the proper care. I'm praying that she pulls through with flying colors.

02-10-2014, 07:18 PM
Hi MEustace.

I'm so sorry that you mum has been taken in to hospital but I am so glad she is there.

After your post last week, I was really starting to worry about her........she is in the right place now.

It's such a sucky disease, this WG. :crying:

Get yourself some rest when you can and I hope, with the infusions, things start to look better quickly :hug2:

02-11-2014, 01:20 AM
Hi, I am sending my prayers to your mom and your family. stay strong and please update us. we are all with you all the time.

Debbie C
02-11-2014, 06:39 AM
I too am sorry to hear your mom is so ill right now but it does sound like the drs. are on top of things And you said her lungs looked better than the last time so there's some improvement. And steroids and rtx work wonders.I know its hard and there is nothing you can do but stay strong for her.Keep us posted and try to get some rest.:hug2:

02-12-2014, 09:57 AM
WOW I thought I had it bad.
My prayers and thoughts are with her and you for a great recovery.

02-23-2014, 09:39 AM
Hi all
Sad to inform you that MEustace's mother passed away on Tuesday 18 Feb.


02-23-2014, 10:12 AM
I have lost count of how many Weggies have past away. Well above 50 for sure.

I am so sorry for the loss of your mom. I hope she didn't suffer too much.

02-23-2014, 10:24 AM
So sorry for your loss. My prayers are with you and your family during this very difficult time. Please rest easy knowing you did everything you could to help her. This is a very difficult disease to control and so much harder on the elderly.

Dirty Don
02-23-2014, 11:03 AM
Sorry for your loss MEustace...take good care now...

02-23-2014, 02:08 PM
I am so sorry to hear that, my thoughts and prayers are with you. (Thank you, Andrew, for letting us know.) It is so sad. It could have been any of us, I guess.... I'm so sorry it had to be your mom. I'm sure she was a wonderful woman and will be dearly missed. I feel for you so much as you go through the process of dealing with this loss.

02-23-2014, 04:37 PM
I would like to put a candle on the map if anyone knows the location. We are getting far to many candles.

02-24-2014, 02:29 AM
I've been having one of my periods of less activity on this forum and just read the start of this thread. I was about to reply and say something along the lines of don't worry about biopsy not being done yet, the main thing is that she's started her treatment and I'm sure everything will work out. I then noticed that she's sadly passed away.
It really sends shock waves through me each time I hear someone has suffered the final blow from WG.

Our hearts are with you MEustace.

02-24-2014, 02:39 AM
I am sorry for you mom. I hope that she is in heaven now, watching you from there, with the angles. she is an angel now. no more suffering for her. take care. hugs to you and to your family.

02-24-2014, 03:22 AM
Previous posts indicate she was at Washington, DC near Germantown, MD. I'll put a candle on Maryland.

02-24-2014, 04:52 AM
@MEustace (http://www.wegeners-granulomatosis.com/forum/members/meustace.html)

i am sorry for the loss... i felt sad and and my heart hurts alot when i read this.... i told my mon and she sends her love for you.... even if we dont know you...

i needed to edit here.... nothing i say.. or what anyone says can make the hurt go away..... so i came across 2 words.... ONLY TIME... only time will heal your heart, only time will make the hurt go away... only time... http://www.youtube.com/watch?v=7wfYIMyS_dI

Who can say why your heart sighs
As your love flies, only time
And who can say why your heart cries
When your love lies, only time

Debbie C
02-24-2014, 06:08 AM
MEustace, OMG, I'm am so sorrry for what you and your family are now going though. It seemed liked she went downhill so fast and there was nothing that could me done in time. I am in shock and sadden by the news of your mom amd I hope you will find peace that she is in a better place,free of pain and always watching over you. My prayers are with you and your family.

02-24-2014, 07:37 AM
I too am deeply saddened by your loss.
As I mentioned in an early post, I was really starting to worry about your mum and it hurts to know that I couldn't do anything about it.

I hope that you are still reading on here MEustace and that you can find a little comfort in our thoughts and prayers.

When the time is right, we would love to hear back from you

02-24-2014, 09:04 AM
Hate to hear about your mom. My prayers are with you now dealing with your loss.

02-24-2014, 09:49 AM
I'm saddened to learn of your mother's passing.

Sending you condolences.

02-24-2014, 10:33 PM
So sorry to read of the passing of your Mother. My thoughts and prayers will be with you and your family.

02-25-2014, 02:44 PM
I would like to put a candle on the map if anyone knows the location. We are getting far to many candles.
Where do we see these candles dub?

02-25-2014, 02:56 PM
Where do we see these candles dub?
There's a permanent sticky under "New Member Introductions"
New Member Introductions (http://www.wegeners-granulomatosis.com/forum/new-member-introductions/)

But the easiest is to just go to the link in my signature below.

02-25-2014, 03:00 PM
There is also a link highlighted in blue at the top of every page on the forum! It says Weggie Forum members map. That is the easiest way for me to remember.