Hi There

[Solette]

Hi there everyone,

My name is Solette and my husband Willie was dx'd with WG during Sept 2009. We have been living with this for just over two years but he has been sick for almost all his adult life (we're both turning 30 next year and married for five years in March 2012). He suffered from severe eczema and would constantly have a cold. We went from dr to dr and he finally gave up and said he was just going to have to live with it.
During August 2009 we noticed the burst blood vessels on his hands and fingers. (He plays guitar) He went to see a dermatologist who refered him to an internist. She diagnosed Vasculitis and told him to come back in six months. During this period his also got another cold and went to our GP. When he heard of Willie's diagnosis, he told him to get a second opinion and refered him to friend who is also an internist. He immediatly recognised Willie's symptoms as WG and and looking at scans of his lungs, he admitted Willie for a lung biopsy. He told us that undiagnosed, Willie basically had approx 3 months to live. The WG was so bad that it had affected Willie's lungs, kidneys and liver.
After the biopsy, his lungs collapsed and he was in ICU for ten days as the doctors struggled to get him to breath again. I thought we were going to lose him. Luckily, the medicine finally started to work and he had a complete turnaround.
He initially used Cyclophosphimide and 12 (60mg) of predinisone. After six months, the internist over him changed his Cyclophosphimide to Azathioprine and never took his allergy to Sulpha into consideration. Willie broke out into a red rash from top to bottom. He could not walk without help and was in immense pain. This led to another hospital trip. Luckily my father-in-law was building a house for a Nephrologist at that stage and he knew of Willie's illness. We phoned him and when he heard of Willie's allergy and the medication as well as the rash, he told us to make sure the Azathioprine was stopped immediately. Willie then started on Cellcept and we have not looked back. The Nephrologist refered us to another Nephrologist closer to us and Willie went to see him. This doctor is one of the best we could ask for and even though it is still a three hour drive to see him, he and Willie is in constant contact via e-mail.

During October this year we finally got the good news that Willie's infection count was on 11 and that the WG was basically going into remission. We were down to 5mg of pred every second day. It felt like we could finally breath again. However, when Willie went for his November tests, the infec count was up again and we are back to 20mg of pred every day. Now I get the feeling that he is just giving up and he is not even trying to stay positive anymore.

I know this is a very long and drawn out introduction, but I just want to give the full picture of where we are at this stage. I only stubbled onto this forum yesterday, and it feels great to know that we are not the only ones fighting this. Willie is currently suffering from an airway infection even though it is summer in South Africa, and I always worry when he gets sick, because it takes so long for him to get better.

Good luck to every one and thanks for this forum. Thank you for taking the time to read.

[Trudy]

Solette

Welcome to the forum! I am sorry to hear Willie is having a rough time. This forum is a great place for getting information, comfort, and making friends. We try to help and uplift each other, yet we have some fun also. Some members are very knowledgable of WG, so ask any questions you might have.

There have been a number of couples as members, so I would encourage Willie to join also if he wants. It continues to amaze me how people from all over the world (I'm in Indiana, USA) can be there for each other! Again nice to meet you.

[Geoff]

Hello Solette,

Sounds like you have had a rough time up till now and yet looking back Willie has been very fortunate in how friends and friends of friends have been able to get him on the right path. Living with WG is, as everyone knows, a roller coaster ride, and although your husband is feeling down now, with the right meds and care he will be able to enjoy good times again, and speaking personally when they come along the experience is heightened.

You are right in that keeping a positive attitude will help. Good luck and keep in touch.

[Thakator]

Hi Solette - - and welcome,
Your husband's is a familiar story to most of us on this forum, hence you will find understanding and empathy herein like very few other places. You will also find much in the way of knowledge, knowledge that may very specifically benefit your husband in his fight and that will help you in your support of him. To that end, I would encourage you to read many of the past postings, especially those in the Medications section - - lots of good comments and shared experiences regarding various treatments. The best to you, Ron

[Lightwarrior]

Welcome to our group Solette. I am so sorry that you and Willie have to be on this roller-coaster ride called Wegner's. I have hope that Willie will get better, he seems to respond well when he gets the right treatment. I agree with Geoff, life does seem much sweeter when you do have those periods of remission. I am having my first remission now and it is wonderful, even though I know that I have one foot on a flare. I was diagnosed in December of 2009 and was also close to dying when they figured it out. The people on this site are first class and the support makes all the difference in the world of being able to cope, at least it has for me. You have to know that we will be there for you and your Willie, thank you for sharing your full picture with us.

[Dirty Don]

Welcome Solette and Willie,

Can you come online Willie? This forum is and has been of immense benefit to many people, including myself. Lots of experiences, knowledge, and caring going on here...and, as far as I can find, outside of home and friends close by, the only place I can go where peeps definitely understand what is being dealt with! Best of luck, ask questions, be nosy, be persistent!!!

Don

[BrianR]

This forum is a huge help to both those who suffer with WG and for people like me, the the husband of one who has WG. I have read about several here who have had major ups and downs for several years before reaching remmission. Have faith and I also encourage you to visit www.weggiesunite.blogspot.com

[Al]

Solette, Willie has been through the mill for sure, and bless you for being with him on that wild ride. I know that I owe my life to my wife, and that others here will have equivalent stories. I think that, for Willie, the important thing is to feel that something beneficial can come out of this horrible twist of the knife that the Fates are perpetrating. Could he share his story to a wider audience, perhaps through us, or with a diary or blog? This is something empowering and positive. We are all fighting, and it helps to be in this as a community.

Al

[Dryhill]

Solette, I agree with Al's comments. I have been very grateful for the support of family and friends when everything seems to be going wrong. I hope Wille is also reading the articles on this site and that they will encourage him to continue the fight.

Jim

[Psyborg]

Welcome to the Site Soulette.