Stephanie78
08-16-2013, 04:30 AM
As some of you may recall my husband John was dx with WG in the Spring of 2011. He had a very long and bumpy road however was extremly blessed to have Dr. Ronald Faulk as his overseeing doctor at UNC hospital (University of North Carolina). John's last hospitalization was March 2012 when he had a virus which caused him to go into complete renal failure (WG had damaged his lungs, kidneys, heart, liver, spleen and sinuses). He also at that time had a heart attack and was his sickest. He spent quite some time in ICU over that year and a half. Here is our update!!!
September 2012 John was released to return back to work! His Creantine level continues to be high but they said with his kidney damage that he would have higher numbers no matter what. He struggles with Raynauds disease when he gets cold (Fingers turn purple/blue and go numb). He goes to his cardiologist every 6 months and his neuphrologist every 6 months. He has to do a urine test every week to make sure there is no blood in the kidneys. His energy level is back to where it was before and goes bike riding with our kids. This is a far cry from where he was two years ago. His case was stated to be one of the most complicated cases seen by his doctors. Dr Faulks decision was to have Cytoxan to be his maintenence drug. It seems to be the ONLY thing that keeps him where he needs to be. He has two treatments two weeks apart once a year.
We are so over aware of situations now. If he coughs I begin with 20 questions (Do you feel ok, do you have a fever, does anything hurt..) he replies with "My drink went down the wrong way" LOL. It definitely puts your guards up for symptoms that you would have never thought twice about before.
There was a time where I thought my next update would be that we had lost him to WG. We were called together 3 times as a family by the doctors telling us not to expect him to go home. That is how bad it was! We feel extremly blessed!
September 2012 John was released to return back to work! His Creantine level continues to be high but they said with his kidney damage that he would have higher numbers no matter what. He struggles with Raynauds disease when he gets cold (Fingers turn purple/blue and go numb). He goes to his cardiologist every 6 months and his neuphrologist every 6 months. He has to do a urine test every week to make sure there is no blood in the kidneys. His energy level is back to where it was before and goes bike riding with our kids. This is a far cry from where he was two years ago. His case was stated to be one of the most complicated cases seen by his doctors. Dr Faulks decision was to have Cytoxan to be his maintenence drug. It seems to be the ONLY thing that keeps him where he needs to be. He has two treatments two weeks apart once a year.
We are so over aware of situations now. If he coughs I begin with 20 questions (Do you feel ok, do you have a fever, does anything hurt..) he replies with "My drink went down the wrong way" LOL. It definitely puts your guards up for symptoms that you would have never thought twice about before.
There was a time where I thought my next update would be that we had lost him to WG. We were called together 3 times as a family by the doctors telling us not to expect him to go home. That is how bad it was! We feel extremly blessed!