Solette
12-30-2011, 02:19 AM
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.:smile1: 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. :sad:
Good luck to every one and thanks for this forum. Thank you for taking the time to read.
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.:smile1: 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. :sad:
Good luck to every one and thanks for this forum. Thank you for taking the time to read.