Update on my dad!

[Deb Roy]

Well, as you all know my dad has been through the ringer with WG. He is on his 9th week in the hospital and I am happy to inform everyone that he is doing much better. I cannot believe all the fall backs he has had with this disease. Not once has he had any issues with his kidney's however it seems that there have been issues with every other organ he has in one way or another.
He is eating now and only has the feeding tube on at night. He had lesions all over his face, nose and ears (inside and out) which have now gone away. He is able to swallow without it hurting, He has some scarring but the lesions are gone. His hands and feet look much better, his bottom still has many but are beginning to heal. His lungs are looking much better and the oxygen mask is gone.
He is still concerned about his eyesight, he cannot see in one eye and his other is very blurry. They are looking to get him to the eye doctor so that they can check to see if it is WG or something else.
He cannot walk but he is determined to walk again and I believe he will.
They put in a pace maker yesterday due to his heart going extremely low at night to the point it has stopped for a few seconds. He is still in A Fib during the day and now that the pace maker is in they can continue the medicine to control his rapid heart rate.
Before he went into the hospital he was a healthy 190 lbs, (ok a little heavy per his doc ) He went into the hospital weighing 176 and today he weighs 145. I could not believe how much weight he has lost during his illness, but now that he is eating more hopefully we will see the weight creep back on to him.
I want to thank everyone with their kind words, advice and encouragement for my dad. It has truly helped me to understand this disease a bit more.
From his many trips back and forth to the ICU to now where they are talking about rehab has been a long road, but he is a fighter and is determined to get back home!
Thank you again everyone and I hope and pray that they find a way to cure this! You are all in my prayers!

[Hammy8241]

Cool. Great news... long may the progress continue.

[Sangye]

Deb, glad to hear how much progress your dad has made. However, I'm very concerned about his vision. Have they done a brain MRI or CT to check for Wegs lesions? That is absolutely necessary. Also, I'm assuming they've done an echocardiogram to check if it's Wegs causing the atrial fibrillation. Wegs involvement in the heart is not common, but it is silent.

[Psyborg]

Glad to hear your father is doing better. I hope his progress continues.

[Jack]

Glad to hear that things are improving, it can be a long and difficult journey! Hope he can now get the help he needs to clear up the remaining problems, but bare in mind that most will almost certainly be caused by Wegener's. Generally doctors have a habit of trying to diagnose something they are more familiar with when a Vasculitis Specialist would know that Wegener's can cause many effects that don't even appear in the publications.

[Brooke]

That is awesome news! I hope he only gets better and better!

[Deb Roy]

Thank you everyone,
Sangye they have not done an MRI or CT. He was moved to a rehab facility on Friday night and they are talking about getting him to an eye doctor as soon as they can. Would the Rhemy schedule a MRI or can the eye doctor schedule one? My dad would really like to know what is causing the issues with his eyes. The doctors keep saying they think it is from the Steroids.
He stood up yesterday with help and the therapist had him walk a few steps. He was exhausted but so proud of himself. To hear him yell out to my mom telling her to look I am walking was very emotional.
He has lost a few layers of skin from his bottom due to the lesions, but the rehab hospital is taking good care of him and making sure they get them healed.
He has also lost quite a bit of weight, but he is in good spirits, besides the fact he does not like the hospital food and he is on a sugar free diet which does not make him too happy; he is eating and knows if he wants to get off the feeding tube at night and build his strength than he needs to eat.

[sadpixie]

Great news! I hope he continues to improve.

[Sangye]

Thank you everyone,
Sangye they have not done an MRI or CT. He was moved to a rehab facility on Friday night and they are talking about getting him to an eye doctor as soon as they can. Would the Rhemy schedule a MRI or can the eye doctor schedule one? My dad would really like to know what is causing the issues with his eyes. The doctors keep saying they think it is from the Steroids.
He stood up yesterday with help and the therapist had him walk a few steps. He was exhausted but so proud of himself. To hear him yell out to my mom telling her to look I am walking was very emotional.
He has lost a few layers of skin from his bottom due to the lesions, but the rehab hospital is taking good care of him and making sure they get them healed.
He has also lost quite a bit of weight, but he is in good spirits, besides the fact he does not like the hospital food and he is on a sugar free diet which does not make him too happy; he is eating and knows if he wants to get off the feeding tube at night and build his strength than he needs to eat.

Deb, high dose pred will make your vision blurry. Your post said he can't see out of one eye. That is not due to pred. I can't believe no one has checked that out. Any of his docs can schedule an MRI and they should do it immediately. His docs might not know Wegs can affect the central nervous system and/or the eyes.

[beeinformed]

Deb, high dose pred will make your vision blurry. Your post said he can't see out of one eye. That is not due to pred. I can't believe no one has checked that out. Any of his docs can schedule an MRI and they should do it immediately. His docs might not know Wegs can affect the central nervous system and/or the eyes.

Hi Sangye!

You mentioned that wegs can affect the central nervous system? Wow, I was unaware that it could!