Granddaughter Has WG

[Sangye]

I'm trying to remember turning down any food--I can't think of anything! I ate everything. I didn't know for several weeks it was the pred. I thought it was the chemo requiring me to have more food in me so I wouldn't feel nauseous or something.

My first docs were so bad that way. Can you believe they never told me it makes you eat like a fiend?? I didn't have internet access, so I didn't find out for months!

[Doug]

Sangye-

That's right! I forgot about that eating like a horse! Do you suppose it was the prednisone that made food taste bad? All I know was I thought the hospital food tasted like it came from a three-star resterant. Yeah, sure!

[andrew]

Ha! When I was on the Pred I don't think food was in my mouth long enough for me to taste it. I sucked down anything that wasn't nailed down Absolute food-vaccum. No recollection of taste being affected.

[Grandma2Katie]

Thanks Doug for the food tip. I will pass that along to Laura. Katie thinks ALL foods should be very sweet. Maybe we will get lucky and she will crave chicken and veggies!

Cindy

[Grandma2Katie]

John, I am concerned about Katie's regimen when she goes home. She lives 4 hours away from the hospital and doctors. How often should she be checked once she gets home?

Cindy

[Doug]

Chocolate rabbits are available again! Haw!

[Jack]

Revisits -
So much depends upon how she is doing and how stable she is. At first, I think I was on weekly visits, but this dropped as my condition became better and for most of the time I have been on 3 months. However, on more than one occasion, I had to ring up because I was unwell and when I went in to be seen, they would not let me go home again!

[Luce]

I'm six months down the line from diagnosis and am still been seen every 2-3 weeks with weekly blood tests in between.
I believe it was the oral chemo pills that made food taste funny, I went off so many of my favourite foods and picked up some cravings for things I'd never enjoyed before. For example I swapped coca cola for tea!!
When I came off them most of my normal preferences returned but I still don't like coke and I've just started the pills again so will report any oddities.

[Doug]

Cindy, I don't know how the hospital care is organized back there.

Here, I started out at a local general hospital. The local hospital has an affiliation with a regional hospital, 58 miles away, where there are a variety of specialists (including the pulmonologist I still go to). The two hospitals "share" the specialists through a specialty clinic at the local hospital. The specialists each come up twice a month, in rotation, on different days, so one can see specialists locally five days a week.

For a while, in the early stages of my illness, I was going in to either the specialty clinic at my local general hospital to see my pulmonologist or having to go to his office at the regional hospital for check ups. Either way, he was in consultation with the rheumatologists in Denver, who were satisfied he had control of my care, based on reported test results.

I only had to go back to Denver once (2005) to the University Hospital to see the rheumatologist who managed my care there in 2004. My Denver rheumatologist after a very thorough examination (2 hours!), was very happy with my progress and said he wouldn't need to see me again if I continued to heal the way I was.

Other than the cANCA test (which I have on a six-month schedule or if I have symptoms suggesting a flare, as needed), the lab at my local hospital does my lab work and reports it to my pulmonologist. Usually I get that lab work done the same day I see him here so that's part of my regular lab work routine. I'm on a six-month schedule for that now, too, unless I have reason to think I might be having a flare. I thought I was having a flare a bit over a year ago. It turned out to be a false alarm, but it happened a month earlier than schedule for my routine cANCA test. That reset my routine appointment schedule by a month, but that still is a six month thing, mostly done at my local hospital.

Katie's doctors will determine how often and where she needs to go for check-ups. Does she have one doctor you've identified as her primary care doctor, say the first specialist she saw who ultimately sent her to the hospital four hours away from home? That will probably be the doctor who manages her maintenance care. If that doctor is at the hospital four hours away, Katie's parents should ask about the possibility of managing her care through a doctor they and the specialist have confidence in who is closer to their home. Katie's progress will determine whether that is practical or safe.

[jola57]

I have been on the chemo pills and prednisone since September, blood check is every 2 weeks, and I see rheumy every 3 months. When I was diagnosed in 2006 it was the same but I had so many questions about symptoms that a I just picked up the phone and went to to the docs any time I wanted. Its the prednisone that makes you eat like a vacuum. From comfortable 155 lb at 5'7" to 215 lb. Yah Andrew its like everything thats not nailed down just goes whoosh and yam yam. I have always been a picky eater, now EVERYTHING tastes great and yummy. Its not enough to have one sandwich or one slice of pizza, its 3 or 4.
As I remember it took a couple of months to get that hunger, it wasn't right away. Chemo did not make me sick or put me off my food, and I didn't lose any hair but it curled - I call it my special perk.