Biopsy results

[Stephanie78]

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).

[Jack]

That all sounds like great news and they seem to be getting on top of things. Hope the issues with the kidneys work out. At least he seems to be receiving the best attention.

Get a urine bottle to use in the car.
I keep one with me as a backup because it is not always possible to find facilities with wheelchair access.

[NicShaf]

Great news Stephanie, I'm glad to hear John is seeing such great specialists now.


I think we all cry a lot in the beginning, I know I did. But, it will get easier. As John starts to improve and with time, everything gets easier

Did they say why they were changing his Preds dose up and down like that? Just curious, I'm not questioning the experts, I'm sure they know what they're doing, just wondering if they said they did it that way for a specific reason?

[pberggren1]

Great news Steph. My Wegs doc here stays in regular contact with Dr. Falk. He said he is a very good speaker and knows a lot about Wegs and is one of the best Vasculitic doctors in the world.

[Sangye]

That's so wonderful to hear, Stephanie!

I'm relieved John is finally under the care of a true Wegs specialist. Really glad they finally got his pain under control and he's eating again.The type of pred taper they're doing is fine, just not as commonly used. Since he hasn't been on pred very long he'll probably tolerate it just fine. When people have been on pred for awhile they can't do that type of taper.

[Jack]

As Sangye mentions, there are all sorts of odd taper methods favoured by different specialists and some are tolerated better than others depending on the individual case. Missing the dose on some days or cutting to a lower dose on some days is quite common, but not something that would work for me. I can't tolerate missing a day without feeling the effects quite badly.

[Stephanie78]

Jack, you better believe we didn't leave without a disposable urinal! Last time (in June) it was really bad. He had an accident last month while laying in bed so we were prepared for what we may have in store for the ride home. Thankfully it wasn't that bad

Phil, It thrills me to know that your drs deal with Dr Falk! It makes me feel more secure with his care! With doing reasearch on this disease his name has shown up hundreds of times (online) so I felt like I had won the lottery when they said he would be Johns primary dr when it came to the disease.

Nicole, I have no clue why they chose this method. All I know is...I'm not gonna question it. As Sangye and Jack said it is a method that some drs use. He hasn't been on pred that long (since May) so maybe that is why? Again I'm not sure but I'm gonna trust him in this decision.

FYI just spoke with John. Physical Therapy went good. He will go 2 times a week for 6 weeks. He seemed in good spirits today!

[Jack]

Welcome to the roller coaster!

[pberggren1]

My doc always looks forward to Dr. Falk's presentations at the annual Nephrology convention in the US.

[Sangye]

Welcome to the roller coaster!

LOL! That says it all.