Skicpa
01-26-2011, 12:49 PM
Hi all. My wife has WG. She was diagnosed in 1995, after wasting a year with her GP and being treated for a sinus infect. She's currently having a flare in her kidney's and on 850mg IV cytox once per month, and 60mg pred daily. She suffered a stoke likely caused by hormonal replacement therapy given to her by a gyno who likely did not understand vascular disease, back in 1999. She goes into "remission" but seems to flare every once and a while. This last remission lasted only two years, this time it came back worse with 3500 mg protein dumped instead of 1700-1800 in 2008. We have been to Cleveland a couple of times and saw Gary Hoffman, last time in 2003. She was being treated by a rheumy in Denver since 1995 but he seemed to be getting too busy and testing too much (hand x-rays every year, labs for Sjorgens syndrome every month?) so we switched later last year. The new one took her off pred and then bam, a flare. It could be coincidental, who knows. She tolerated pred much better when she was younger. Now, when on 60mg she develops psychosis, confusion, doesn't eat, loses weight of all things. She is tested to death. During her last flare, in 2008-09, she had 25 doctor visits/tests from December 08 to May 09. She saw every type of doctor from a gastroenterologist to an oncologist to a hematologist to pulmonolgist to an ENT to a rheumy to a nephrologist to a psychiatrist to a neurologist to a urologist, and every one said that outside of the WG she was fine. The testing, it seems, is far worse for us than the treatment. Because of the constant testing she is unable to work, and I am barely able to, being her driver and caregiver. We recently moved to the city from the mountains, where we had lived for 22 years, to be closer to her docs and live where it's more affordable. The travel time back and forth was literally killing us. I70 is not our friend.
I would like very much like to discuss her treatment with others, and maybe even trade notes on docs. I am curious if others are subjected to so much testing, much of it seems unnecessary to us outside of ENT, rheumy and nephrologist and annuals. We have lost everything financially because of the testing and the time it took from us, not the actual treatment. She just had a kidney scan, then a biopsy. The biopsy showed inflammation in two of 17 samples. She was uninsured for many years, on the state Cover Colorado program, and that helped wipe us out too. She finally got SSDI at the end of 2009, but our AARP supplemental insurance for her is almost $500 per month and that takes most of it.
I am a CPA, as you might guess, but only part time now with all of the medical stuff we go through. I am afraid we may have been subjected to medical malpractice of sorts, too much medical care if that's possible. Anyway, a long and winding story that I hope to sort out better as we get familiar here. I think it is time to take her to a vascular center so if anyone has experience with Utah that might work for us. Not sure I want to put her on a plane right now. She did pentamidine after chemo two weeks ago, but still trying to keep her away from germs.
I hope to share our experiences with everyone and I am never too busy to do so, please feel free to PM me.
I would like very much like to discuss her treatment with others, and maybe even trade notes on docs. I am curious if others are subjected to so much testing, much of it seems unnecessary to us outside of ENT, rheumy and nephrologist and annuals. We have lost everything financially because of the testing and the time it took from us, not the actual treatment. She just had a kidney scan, then a biopsy. The biopsy showed inflammation in two of 17 samples. She was uninsured for many years, on the state Cover Colorado program, and that helped wipe us out too. She finally got SSDI at the end of 2009, but our AARP supplemental insurance for her is almost $500 per month and that takes most of it.
I am a CPA, as you might guess, but only part time now with all of the medical stuff we go through. I am afraid we may have been subjected to medical malpractice of sorts, too much medical care if that's possible. Anyway, a long and winding story that I hope to sort out better as we get familiar here. I think it is time to take her to a vascular center so if anyone has experience with Utah that might work for us. Not sure I want to put her on a plane right now. She did pentamidine after chemo two weeks ago, but still trying to keep her away from germs.
I hope to share our experiences with everyone and I am never too busy to do so, please feel free to PM me.