News of The Pierre(42)

[Pierre42]

I may have the opportunity to be living-n-working in Sunny San Francisco (for a non-trivial period of time) before the year is out.

:fullofwin:

Pointers on GP/Hospital/Specialist and contact details would be appreciated.

I will be bugging my current (Australian) GP for some kind of medical braindump I can bring with me (ideally electronically).

[whatthewhat]

Stanford is very good. UCSF is good too. Best wishes; it's one of my favorite cities.

[annekat]

San Francisco is a lovely city. It isn't sunny all the time, but the fog usually burns off in the afternoon. The WG specialist at UCSF is the one mentioned the most often, Dr. Sharon Chung. See her on this link: Vasculitis Foundation » VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) There may be someone at Stanford mentioned there, too; unfortunately, it isn't alphabetical or by state. Here's another site to try, for docs recommended by patients, listed by location: http://www.vasculitispan.org/

[Jaha]

Congrats, and I'm wishing you all the best with the transition.:thumbsup:

[TommyG]

Dr Sharon Chung at UCSF is a great Wegeners Doctor. I highly recommend her:thumbsup:

[NikkiNicole]

Welcome to my side of the world if you come! Maybe we can grab lunch sometime. I would love to see Dr. Chung at UCSF but I haven't reached a level of needing her yet. I guess that's a good thing. My rheumy is great friends with her so I sort of get her input at a distance.
San Francisco is a lovely place. It can be yucky foggy but ... it also burns off sometimes too. Come a little north to my gorgeous neck of the woods, Sonoma County, Wine Country ... location of the fantastic Bodega Bay and gorgeous North Coast of Jenner, Timber Cove, Fort Ross and The Sea Ranch.

[Pete]

I would love to see Dr. Chung at UCSF but I haven't reached a level of needing her yet.

After reading some of yhour other posts, I respectfully disagree. Your symptoms should not be "toughed out". Go see Dr. Chung and see what she says!! PLEASE!!!???



San Francisco is a lovely place. It can be yucky foggy but ... it also burns off sometimes too. Come a little north to my gorgeous neck of the woods, Sonoma County, Wine Country ... location of the fantastic Bodega Bay and gorgeous North Coast of Jenner, Timber Cove, Fort Ross and The Sea Ranch.

I spent a week at The Sea Ranch a few years ago and loved it. The drive north from Bodega Bay made me want to drive my Boxster out there sometime just to drive the PCH there. Also, some of the wineries in Mendocino County produce some really nice wines. I like Navarro and (the old) Lazy Creek.

[Dirty Don]

"I would love to see Dr. Chung at UCSF but I haven't reached a level of needing her yet." RU kidding me Nik??? You're past that level...have you looked back & read any of your 'desperate' posts? Don't mean to be mean, but 'proactive' has not been seen on this blog yet...you need some definitive support, and if Chung offers that, then it's better than what you've been doing. Best to you as always.

[MikeG-2012]

Nikki: I agree with Pete and Don, you need to get to a specialist IMMEDIATELY, if not sooner. All of the symptoms that are from this disease are cumulative; meaning that once you've went past a point and toughed it out, it may never get better past that point again. Had I not continued to tough out my last flare-up, I would probably not have permanent scar tissue in my lungs. The damage was done by the time I convinced my rheumy that I had active disease in my sinuses (which the ENT had been telling him for two months).

So STOP TOUGHING IT OUT!! GO get help now.

(Pseudo-Dad mode turned off now)

We all want you to feel better girl! YOU DESERVE IT!!

[Birdie]

It can be yucky foggy but

Oh man I love the fog in SF. The temp drops a bit and you get just a slight breeze that brings in fresh sea air. I hear the bay has been cleaned up in the last 25 years. Restored waterfront and marsh lands. Must be even better than I remember. On top of all the natural beauty it's also a beautiful city.

[NikkiNicole]

It is a nice city. I love the view from my side of the Bay. I haven't been down to SF in awhile. My husband has been working down there so he never wants to spend any leisure time there. But, I am a girl who is used to going there a LOT! I'm going through withdrawals.

I love being surrounded by amazing wineries. Just had dinner at Coppola last night. Such an incredible view, great wine, and the food is pretty awesome too. It's one of my favorites. The other is in Napa County. Castello di Amarosa. Look it up. Gorgeous castle!!!

[Pete]

Have you tried Vittorio Sattui in St Helena? They have some really good reds. The Preston Vineyard cabbie is one of my favorites...

[annekat]

You guys are making me miss Northern California. In my present economic state and with my health issues, I just cannot travel right now. But it is nice hearing about the region and the delightful places to go there. I'm sure it's changed in 24 years, but it sounds like it hasn't lost it's basic charm and is probably even better in many ways.

[Birdie]

You guys are making me miss Northern California. In my present economic state and with my health issues, I just cannot travel right now. But it is nice hearing about the region and the delightful places to go there. I'm sure it's changed in 24 years, but it sounds like it hasn't lost it's basic charm and is probably even better in many ways.

OK Anne, SF is nice but if you're gonna dream about travel then dream big, dream about Tasmania. (Hi Andrew) It's one of my favorite places, even has tropical birds living where they're supposed to live. Incredible scenery in a place that's safe to enjoy it, and it's everywhere. So you rent a car and drive the coast. You get about ten miles a day because you have to stop constantly and stare for hours at the view. People talk funny but you can overlook that since they're always pleasant and relaxed.

[annekat]

OK Anne, SF is nice but if you're gonna dream about travel then dream big, dream about Tasmania. (Hi Andrew) It's one of my favorite places, even has tropical birds living where they're supposed to live. Incredible scenery in a place that's safe to enjoy it, and it's everywhere. So you rent a car and drive the coast. You get about ten miles a day because you have to stop constantly and stare for hours at the view. People talk funny but you can overlook that since they're always pleasant and relaxed. Actually, I don't generally dream seriously about travel. I stay home. Which means I can be an armchair traveler to just about anywhere. There is a woman with Wegs in Tasmania named Jenny, but it was her husband who came on here to talk. Now I only see him on Facebook and he does take a lot of good photos of birds and scenery in Tasmania. As far as I know, Jenny is doing OK.

[NikkiNicole]

Pete I have been to V Sattui. It's actually V Sattui's grandson who opened Castello di Amorosa.

I want to travel someday. I'm getting on a plane next month for the first time to go to Southern California. Yes, I am in my mid-thirties and this will be my first plane ride. I was excited until I was put on double the dose of CellCept. Now I feel like all I will see is the germs floating about in the air for the entire plane ride. But ... I can't go see England and all the places of my dreams if I don't first get over my fear of flying.

[Pete]

Getting on a plane is like getting on a bus -- only safer. There are books available to help you learn more about what to expect on a plane.

[annekat]

Nikki, I'm 63 and I've only been on a jet three or 4 times, and a small plane or glider maybe three times, for relatively short trips in the west coast states. Three of them were from Sacramento to Southern California or back, we're talking one way. One of the times i took the train one way and flew back. I'm not much for flying either, but try to get a window seat, and once you are up there, have a cocktail, if you think it's OK given your WG and meds. Looking out at the clouds and whatever else there is to see is really cool. it will be a pretty short trip, and it will be fine. I'm with you. As for germs, wear a mask and/or bring hand sanitizer to put on your hands and around the openings on your face.

[Pete]

Getting on a plane is like getting on a bus -- only safer. There are books available to help you learn more about what to expect on a plane.

...and you can probably find videos about dealing with fear of flying on YouTube... Showing my age in the earlier post. :-0

[mishb]

I was excited until I was put on double the dose of CellCept. Now I feel like all I will see is the germs floating about in the air for the entire plane ride.


Put a scarf around your neck and strategically pull the front of it up over your nose and mouth when you get into the plane.
Just pretend that you are cold.
It really does save you from the germs that are flying around, and is less noticeable than wearing a mask to avoid germs.

Apart from that - you are going to enjoy the plane

[annekat]

Put a scarf around your neck and strategically pull the front of it up over your nose and mouth when you get into the plane.
Just pretend that you are cold.
It really does save you from the germs that are flying around, and is less noticeable than wearing a mask to avoid germs.

Apart from that - you are going to enjoy the plane I thought of you and the scarf, too, when replying to Nikki, Michelle. I agree it would be just as effective as any of the common masks, and a lot better looking and less noticeable. And I've always been nervous about flying, the few times I have, but have always enjoyed the window view immensely, once I was up there.

[NikkiNicole]

A scarf! Perfect!!!! I have the perfect scarf. I'll have to remember to bring it for my travel days. Hand sanitizer is probably insanely impossible to get on a plane what with all the travel rules. I'll go with the scarf.

After all, Michelle, I can't come visit you down in Oz without making this jump,right? We are planning to go to NZ. My sister in law is going to school down there.

[Pete]

You can get travel-sized bottles of hand sanitizer at the grocery store, drug store, or maybe Target.

[annekat]

Well, washing your hands is supposed to be better than hand sanitizer, anyway, so do that before, after, and during your time on the plane. True what Pete just said, too. I've gotten 3 for $1 at the Dollar Tree.

[Birdie]

Hand sanitizer is probably insanely impossible to get on a plane what with all the travel rules.

Sanitizer wipes are not a bottle of liquid, I doubt they're a problem on a plane and they are supposed to work better.

[mishb]

I try to avoid the bathrooms on planes. I don't know how really large people even manage to get into them, they are so squishy......and dirty.

The little wipes that you get from KFC or even the travel hand sanitisers are the best options, in my opinion.

We are also trying to plan a trip to NZ next year, or the year after. Maybe we can go at the same time Nikki :thumbsup:

[annekat]

Good point about the plane bathrooms, Michelle. My trips were so short I didn't need them, and I can only imagine. Maybe OK for a quick hand wash and would assume they use antibacterial soap. But the hand wipes do sound perfect, and can easily be used around the nose and mouth, too. Maybe the flight attendants would even have some on hand. (I almost called them stewardesses, dating myself..)

[mishb]

I was thinking last night and I remember that we also took a little packet of baby wipes with us.

[Pierre42]

I left my heart in San Francisco ...
(and my gall bladder in Sydney).

I lived and worked in SFO during The Great DotCom Boom-n-Bust, 1996-2003.

.... Counting down the seconds waiting for The Final Confirmation....