Stephanie78
07-09-2011, 02:58 AM
We are home from Chapel Hill. YAY! Biopsy went great as did the CTX infusion. We did get the biopsy results back yesterday, and although they could be worse, it felt like another hard blow!
They said that right at 50% of both kidneys are damaged/involved. HOWEVER at this time the kidneys are doing what they are suppose to do...That is until it comes to the filtering part. Instead of filtering out the proteins it is releasing them in the urine. At this time it is not causing issues to John (Meaning it is not causing him any discomfort) but it is a possibility it could in the future. (I like that word "FUTURE") His main dr that was seeing over him was Dr. Michael Smith of the rheumotology group at CH. However now his main "Overseeing" doctor will be Dr. Ronald Falk (Founder of one part of the ANCA antibodies that links to WG) He is one of the TOP neuphorologist in the US and is THE expert when it comes to WG. That alone makes us HAPPY! He will still be seen by the rheumy every 3 months however he will see Dr Falk more often and he will control the medicines/treatments from here on out.
They did start tapering off the prednisone this visit. It is SO weird! They gave me a schedule (Which I am SO thankful for). Yesterday he had 60 today 40 Tomorrow 60 the next day 20 the next 60 and keep going like that. Like I said I am thankful for the schedule they gave me!
He started Physical Therapy today. My mom took him so I have no clue how that went yet. I cry most mornings all the way to work because I feel guilty having to leave someone else to care for him during the day YET I cry most evenings on the way home because I know what I am going back to. And of course that alone makes me feel guilty!
NEXIUM...That is his friend. They had him on 40mg a day and he was still having horrible pains in the abdomen. They put him on 80mg (one in the morning and one in the afternoon) and the PAIN has CEASED! YAY FOR NEXIUM!
He is off of the difulcan now (Thrush) and he still continues to have some issues swalling tougher foods (beef being the main one) but his tastes are coming back!
We go back on July 21st to see the rheumy and kidney dr and have another infusion set up on the 4th of August. However we are going to see what we can do to get the infusions set up here at home. That 6 hour round trip drive is about to wear me out! Plus it is a LONG day for John! Since they give him the bags of salt/sugar water/saline before and after the infustions it causes him to have to pee the rest of the day (Like every 20 minutes and A LOT) doesn't really make for a FUN ride home (Especially in the storms we had yesterday).
They said that right at 50% of both kidneys are damaged/involved. HOWEVER at this time the kidneys are doing what they are suppose to do...That is until it comes to the filtering part. Instead of filtering out the proteins it is releasing them in the urine. At this time it is not causing issues to John (Meaning it is not causing him any discomfort) but it is a possibility it could in the future. (I like that word "FUTURE") His main dr that was seeing over him was Dr. Michael Smith of the rheumotology group at CH. However now his main "Overseeing" doctor will be Dr. Ronald Falk (Founder of one part of the ANCA antibodies that links to WG) He is one of the TOP neuphorologist in the US and is THE expert when it comes to WG. That alone makes us HAPPY! He will still be seen by the rheumy every 3 months however he will see Dr Falk more often and he will control the medicines/treatments from here on out.
They did start tapering off the prednisone this visit. It is SO weird! They gave me a schedule (Which I am SO thankful for). Yesterday he had 60 today 40 Tomorrow 60 the next day 20 the next 60 and keep going like that. Like I said I am thankful for the schedule they gave me!
He started Physical Therapy today. My mom took him so I have no clue how that went yet. I cry most mornings all the way to work because I feel guilty having to leave someone else to care for him during the day YET I cry most evenings on the way home because I know what I am going back to. And of course that alone makes me feel guilty!
NEXIUM...That is his friend. They had him on 40mg a day and he was still having horrible pains in the abdomen. They put him on 80mg (one in the morning and one in the afternoon) and the PAIN has CEASED! YAY FOR NEXIUM!
He is off of the difulcan now (Thrush) and he still continues to have some issues swalling tougher foods (beef being the main one) but his tastes are coming back!
We go back on July 21st to see the rheumy and kidney dr and have another infusion set up on the 4th of August. However we are going to see what we can do to get the infusions set up here at home. That 6 hour round trip drive is about to wear me out! Plus it is a LONG day for John! Since they give him the bags of salt/sugar water/saline before and after the infustions it causes him to have to pee the rest of the day (Like every 20 minutes and A LOT) doesn't really make for a FUN ride home (Especially in the storms we had yesterday).