Activity Stream

I haven't been given any time frame for how long it should take to recover. I have mentioned on a couple of occasions that I expected to be...

I've lost all sense of diet and need to re calibrate my tongue. In the meantime, I hopped on the bike and rode 6 1/2 miles today. I haven't gone that...

gilders Did your doctor say anything about how long it would take for you to recover from the transplant itself? Was anything said about how much...

Just got today's blood results through my eGFR has dropped 9% to 42%. Bit gutted, I was so pleased when it had jumped to 51% after 3 days of IV pred....

Hi Pete, I could ask about that, but in truth I'll probably just "man up" and let them get on with it. I hate making a fuss :biggrin1: I had a...

gilders Any chance the procedure can be done under “twilight” anesthetic? When I had my colonoscopy, that’s what they gave me. It was two drugs,...

Unfortunately the biopsy results hadn't come through by yesterday, so they won't be ready until after Easter now. After the surprising improvement of...

Lucky, my food situation is nearly the same as Alysia's, and I am also very low in vitamin C, because I cannot tolerate fruit and especially cannot...

I'm just catching up on here Pete. I hope you now have some good news on your kidney, and that the improvement is still happening. I agree that...

It's a sad fact

Sounds like very good news, Pete ! What a roller coaster ride you have been on! We hope and pray that you continue to have great news for us! Maybe...

Sounds all good. When we didn’t hear from you for a day, I was ready to put an all out alert in search of our hero. Use keep the prayers coming...

Some EXCELLENT news! Went in for biopsy on new kidney yesterday. They did bloods to check my coagulation level and all the other bloods they...

Dr. Devyani Lal, ENT at Mayo/Phx is excellent. She even showed me the inside of my sinuses as to where the disease did damage...in COLOR! What!?...

The prayers help thank you. I'm being included in the weekly prayer list at our local church. I'd only just told them on Thursday how well I was...

You are definitely giving everything your best shot. I wish I could say and do more than to tell you my husband and I keep you close to our hearts...

I had my third and final steroid infusion today. Biopsy did not occur today as I'd expected for 2 reasons - 1. I had been told to cease warfarin on...

Possibility at Mayo/Phoenix: https://www.vasculitisfoundation.org/event/phoenix-vasculitis-regional-conference/

The books have already been written. All we have to do is read them. To save you some time here is a good place to start that is easy to read. They...

I'm glad to hear it's not all bad and some things, like your vision, have improved. As Alysia said earlier, all your descriptions of what you are...

I don't want to come across as being a negative person and want to reiterate that even with some of the Wegeners relapse symptoms, I still feel...

Oh Gilders, I ditto what Pete and Alysia said. One day or one hour at a time. My prayers continue. Masha

Hi Pete - Dad is still doing great. He's just worried about me at the moment. He jokingly said just after the transplant (when things were going...

Thank you SO much, Lucky, for sharing so generously so much precious info. I appreciate it. Maybe its time you will write your own book ? I will...

Thanks for the updates, gilders. I am so sorry you are going through all these and I pray that your kidney will settle down with no more issues. If...

@gilders You’ve had several miracles to get this far. I hope there’s another one in the offing for you. How is your Dad doing?