What The Heck ?!?!?

[Al]

....The upside to this is that John and I have had all this "alone" time together. We will be leaving for UNC when I get off work tonight and stay in a hotel so that we don't have to get up so early for the drive. Downside to this is, that all of our alone time over the past 8 months has been in a hospital room OR the car on our way there or back home. PLUS we have to leave our two kids with my parents (which I'm so grateful for). Zach (15) has a better understanding. Kimberlee (8) doesn't. I've never minded the drive for a good reason. It is sometimes annoying that we drive 5.5 hours round trip for a 20 minute dr appt, but driving it so that he can get the proper care has never been an issue. Plus side to it all, my best friend just moved to Raleigh (10 minutes from UNC) so we will get to visit and have dinner with her tonight. YAY!

You are right, Stephanie--we take our joys where and when we find them! I love the long rides with my wife; we can talk about things that require thought, rather than just covering the daily business of shopping lists, what to take to the post office, who will run what errands, and so on. On the long ride, none of that can get done anyway, so it works (at least for us) as a special time--to share DDVftF (Hopes, Dreams, and Visions for the Future). And there are some pretty good places to eat in Raleigh, both the state capital and a university town. And the weather shouldn't give you any trouble.

These things are hard to understand at any age, though your 8 year old is likely quite vulnerable. I feel for her; that is about the age I was when I realized that my father was seriously ill. But neither does it work to shy away from what you have to do. I think you and John are doing everything right, Stephanie.

Al

[KathyB]

I hope your visits and subsequent treatments are successful! My husband is a UNC grad (played football "back in the day") and coincidentally, my rheumy is a med school grad from UNC who played football one year with my husband! Small world! I'm glad to hear UNC has a knowledgeable staff when it comes to WG. My doc expects Rtx to be a regiment for me every six months. I've only had one so far -- four treatments, one each week. Due for round 2 to begin at the end of February. P.S. My niece also did her residency at UNC but is an OB/GYN in Cleveland now!

[Al]

I hope your visits and subsequent treatments are successful! My husband is a UNC grad (played football "back in the day") and coincidentally, my rheumy is a med school grad from UNC who played football one year with my husband! Small world! I'm glad to hear UNC has a knowledgeable staff when it comes to WG. My doc expects Rtx to be a regiment for me every six months. I've only had one so far -- four treatments, one each week. Due for round 2 to begin at the end of February. P.S. My niece also did her residency at UNC but is an OB/GYN in Cleveland now!

UNC and Cleveland are both among the top institutions for both vasculitis research and treatment, Kathy. You aren't too far away from Chapel Hill; maybe you should get your doc to wangle a consultation referral....

Al

[KathyB]

I've talked about this with my husband since we have a vacation place down in Currituck and we are in Chapel Hill at various times during the year. Can someone share a doc name and specialty at UNC? We also have Johns Hopkins north of me. One of our high school students was diagnosed last spring and uses JH. His mom and I have connected ... They are very pleased. I trust the folks at VCU's MCV (Richmond), but realize they are relatively new at this. One thing I know is I've become a very interesting patient for them and received some priority care as a result!

KB

[Dirty Don]

One of our high school students was diagnosed last spring and uses JH.KB

Sangye uses JHU, talk with her...

[Al]

I've talked about this with my husband since we have a vacation place down in Currituck and we are in Chapel Hill at various times during the year. Can someone share a doc name and specialty at UNC? We also have Johns Hopkins north of me. One of our high school students was diagnosed last spring and uses JH. His mom and I have connected ... They are very pleased. I trust the folks at VCU's MCV (Richmond), but realize they are relatively new at this. One thing I know is I've become a very interesting patient for them and received some priority care as a result!

The main guy at UNC is Ronald Falk, a nephrologist. Stephanie's John sees him, along with others in the vasculitis center. as for JHU, Sangye knows those folks. In either case, the VCU folks would, I am sure, be delighted to provide a referral for consultation. After all, it would be a reason for them to have a dialog with world-class folks--on your dime!

Al

[Sangye]

I've talked about this with my husband since we have a vacation place down in Currituck and we are in Chapel Hill at various times during the year. Can someone share a doc name and specialty at UNC? We also have Johns Hopkins north of me. One of our high school students was diagnosed last spring and uses JH. His mom and I have connected ... They are very pleased. I trust the folks at VCU's MCV (Richmond), but realize they are relatively new at this. One thing I know is I've become a very interesting patient for them and received some priority care as a result!

KB

Kathy, I've been going to JHU since 2008. I see Dr Phil Seo in the Vasculitis Clinic and various other specialists. They are all well-versed in Wegs and see hundreds of Weggies. I thought I was getting decent care at Mayo AZ but when I got to JHU the difference was amazing.

UNC has some Wegs docs but I've heard mixed reviews from others in the group about how well they were treated. I'm not sure they're considered a major vasculitis center. My advice is don't skimp-- go to the best.

[norcalian]

My blood createnine levels have been slowly rising over my past couple of blood tests as well (my last test was at 1.42 mg/dl - which isn't much...but it's trending up, which is disconcerting). The rest of my blood and urine work is normal (even for a weggie). I wonder if it has anything to do with my blood pressure - which has been pretty high since being on prednisone.

By the way, I haven't been able to get on this site in a while. Glad to see that it's still going.

[Al]

My blood createnine levels have been slowly rising over my past couple of blood tests as well (my last test was at 1.42 mg/dl - which isn't much...but it's trending up, which is disconcerting). The rest of my blood and urine work is normal (even for a weggie). I wonder if it has anything to do with my blood pressure - which has been pretty high since being on prednisone.

I'd give my eyeteeth for cretinine levels like that! And the slowly rising part isn't so scary; the spikes are. Pred can push up creatinine some; so can azathioprine. But probably not much. The blood pressure in concerning, though. Are you taking any meds for it?

Al

[norcalian]

I'd give my eyeteeth for cretinine levels like that! And the slowly rising part isn't so scary; the spikes are. Pred can push up creatinine some; so can azathioprine. But probably not much. The blood pressure in concerning, though. Are you taking any meds for it?

Al

I'm taking 480mg(I think - it's the maximum daily dose anyways) of Verapimil. I was on Cozaar but my ID doc took me off it the last time I was in the hospital. my last appt my blood pressure was 146/88. It's been on an upward trend. I'm down to 15mg of pred a day, but I gained a lot of weight and haven't been very physically active lately (that may be an understatement) beyond occasionally taking the stairs at work.