Hello from Perth Australia

[maldugs]

Hi, my wife was diagnosed with Wegeners on the 7th of this month, she has been in hospital for the last 3 weeks, her creatine levels on admission were 710, and there were grave concerns for her kidneys, she is being treated with cyclophosphamine, and prednisolone, also she has a tube in her neck and has had 6 plasmarephisis treatments, which have brought her creatine down to 310. Today the doctor said that she needed blood as her heamaglobin had dropped 3 points, I am a bit concerned, any help would be greatly appreciated.

Regards Mal.

[renidrag]

Sorry you had to find us, others will be along with more detailed assistance however I can say the treatment your wife is getting seems to follow most protocol of our members, without knowing dosages. How long was she displaying symptoms before diagnosis? Also there are many wise Aussie's here to help you.
Dale

[windchime]

Hi Mal, sorry you had to find us this way, but the support here is phenomenal. As Dale said there are many Aussie's on here for local support. Your wife seems to be responding to treatment and that is a good sign. There are others that were in the hospital and near death that made a good recovery so that gives me hope that your wife will too. If you have any questions please feel free to ask. If you would like to share a little more of where/how all this started we could provide you with more specific answers. Here are some hugs for you both.

[mishb]

Hi Mal and welcome.

What hospital is your wife in?

We have many Perth and other WA members in our Aussie facebook group, if you are interested, but I/we can also answer your questions here too.
Her creatinine levels have come down which is a good sign that she is responding to treatment.

One thing - please don't read google about WG/GPA, it can seem really scary. Google tends to over exaggerate things.
Write down any questions that you have or any fears and speak to her doctors or nurses about it, or we can try and help you out.
There is probably nothing your wife is going through that someone on here hasn't already had to deal with.......and is surviving to tell the tale.

Your wife is in good hands and she is in the exact place that she needs to be, at the moment

[drz]

Hi, my wife was diagnosed with Wegeners on the 7th of this month, she has been in hospital for the last 3 weeks, her creatine levels on admission were 710, and there were grave concerns for her kidneys, she is being treated with cyclophosphamine, and prednisolone, also she has a tube in her neck and has had 6 plasmarephisis treatments, which have brought her creatine down to 310. Today the doctor said that she needed blood as her heamaglobin had dropped 3 points, I am frightened that she won't survive this, any help would be greatly appreciated.

Regards Mal.

I had numerous blood transfusions and umpteen plasma exchanges and was intubated for a couple weeks and spent several months in hospital and nursing home for rehab but survived the initial treatment and recovered a great deal over the next few years. It can be rough period for everyone and a long recovery process but remember 90 % of people do survive the initial treatment of GPA if they are treated correctly even when treatment has been delayed a long time due to lack of correct diagnosis. I think it might be tougher on family watching than the patient so best wishes for good results for you all.

[Geoff]

Hi Mal,
Sorry to hear about your wife but if its any consolation her illness markers and treament sound identical to mine 6 years ago. I was able to return to work after 4 months but as you will no doubt realise we all walk a different path with this illness.
I agree looking on the internet is not the best course of action and I would jot down your questions for when you meet your wife's consultant.
This Forum was a god send when I was first DX and is full of very helpfull members who will help in any way.
Wishing you and your wife all the very best on your journey, there will be ups and downs so be prepared.

[Michael Bell]

We are all so different in the way this disease attacks us, I spent 5.5 months in hospital, suffered kidney, liver, lung, digestive system and heart failier. I was in an induced coma for 10 weeks and was given 7 changes of blood plasma. Anyway I just wanted to let you know that I am back at work full time and leading an active( although slightly less active) life. There is light at the end of the tunne,l and with the treatments we get we can enjoy a full and happy life. I wish you both well and will hold you in my prayers. Please be brave for both yourself and your wife.
Mike

[maldugs]

Thanks to all of you, your replies have made me feel much,much better, will let you know how my wife responds to the treatment, the Doctor said she may be able to come home today or tomorrow, after the last plasma exchange today.
Mal.

[LisaT]

Hi Mal, it must be pretty overwhelming right now. Finding this forum and sharing what you learn with your wife will be a huge help to her. Welcome to you and I hope she starts improving quickly. I met a number of people at an in-person support group for the illness who were in very rough shape and hospitalized when first diagnosed (two of them in comas for a time like Michael), who are all doing better now. It seems that people have flares to varying degrees and respond differently to different treatments, but they are out of the woods and have been for some time (the length of time also varies). So, there is lots of hope and reason to believe she will be okay. Keep us posted and ask anything...I'm still learning, but many here are a wealth of information. I'll be thinking of you and your wife...

[annekat]

Welcome, Mal.... everyone has said the important stuff, especially those who've been in similar circumstances, or worse, and come through with flying colors. I'm glad you found us. Perhaps your wife will be able to join in the discussions when she gets home and feels better. And we have a Weggie Forum members map link in blue at top of page, where you can go and add your name, or hers, to the map and see the distribution of members all over the world.