Small update on Elena

[Elena]

Ok, had my dialition yesterday. They actually did try putting a silicon stent in, but they didn't have one small enough to fit. All the scartissue has changed the anatomy of my right bronchus a bit.. So, without the option of a stent they just dilated it with laser and a balloon, but not so much that it's fully open. Only 10mm in diameter. I'm not sure how wide it is supposed to be in a normal person? They didn't want to dilate to much at the moment, fearing damage. they want to be able to dilate more some time later instead. And also, they are going to keep a lot closer watch over it this time, making sure it doesn't get as bad as this time before dilating again. They also used Mitomycin C this time, so I'm hoping it will make a difference and make my thrachea stay open. If not "forever," at least longer than it did last time. They are really afraid of doing anything else than just dilating this way, because I'm so young. And any other options they have will have to be permanent. Not a good thing as I have a long life ahead of me..

Anyways, I feel a lot better after the dilation A bit frustrating that, although I get to go home later today, I have to come back Monday morning. They want a new CT, and they really don't trust the hospital where I live to be able to do it properly.. Also, I'm getting lots of antibiotics to keep infection away, as they're really afraid of me getting one in my Thoracic cavity. Which is really why they want a new CT. Making sure the air that leaked into it is gone..

[Deanne Hull]

HI Elena, glad to hear you are on the mend.

[elephant]

Hi Elena good luck and keep you head open. I was just reading yesterday that Norway is the best place to live in the World! Someday I love to visit this beautiful place!

[Sangye]

Glad to hear you're breathing better Elena! I hope this dilation lasts a long time.

[drz]

Ok, had my dialition yesterday. They actually did try putting a silicon stent in, but they didn't have one small enough to fit. All the scartissue has changed the anatomy of my right bronchus a bit.. So, without the option of a stent they just dilated it with laser and a balloon, but not so much that it's fully open. Only 10mm in diameter. I'm not sure how wide it is supposed to be in a normal person? They didn't want to dilate to much at the moment, fearing damage. they want to be able to dilate more some time later instead. And also, they are going to keep a lot closer watch over it this time, making sure it doesn't get as bad as this time before dilating again. They also used Mitomycin C this time, so I'm hoping it will make a difference and make my thrachea stay open. If not "forever," at least longer than it did last time. They are really afraid of doing anything else than just dilating this way, because I'm so young. And any other options they have will have to be permanent. Not a good thing as I have a long life ahead of me..

Anyways, I feel a lot better after the dilation A bit frustrating that, although I get to go home later today, I have to come back Monday morning. They want a new CT, and they really don't trust the hospital where I live to be able to do it properly.. Also, I'm getting lots of antibiotics to keep infection away, as they're really afraid of me getting one in my Thoracic cavity. Which is really why they want a new CT. Making sure the air that leaked into it is gone..

How about eating? Do you have a special diet? Hope you avoid any infection and heal quickly.

[Elena]

How about eating? Do you have a special diet? Hope you avoid any infection and heal quickly.

Huh, no, I don't have a special diet. Just eating what I usually do..
Actually I've been struggling a little with loss of appetite there last two weeks. My mom is kind of worried, as I'm loosing a bit of weight. And I don't really have that much to take from.. Trying to eat, but .. not that easy when I really don't feel like putting food in my mouth.

[drz]

Huh, no, I don't have a special diet. Just eating what I usually do..
Actually I've been struggling a little with loss of appetite there last two weeks. My mom is kind of worried, as I'm loosing a bit of weight. And I don't really have that much to take from.. Trying to eat, but .. not that easy when I really don't feel like putting food in my mouth.

Prednisone usually made me very hungry all the time so I gained quite a bit of weight. Initially I lost a lot of weight from the Wegener's disease. Later on I often had to eat some thing in the middle of the night when my blood glucose levels were dropping from prednisone wearing off even when I wasn't hungry. I found what worked best at these times was to drink some fruit juice or chocolate milk since it had carbs with out being too filling. I also took some of those high carb drinks (Ensure) to help you gain weight when I was trying to gain some weight back. Maybe those would help you. Weight loss is normal part of Wegener's for most people so monitor your weight.

[Elena]

I'm at 7,5 mg of prednisone now, and I'm not having any noticable side-effects from it. I lost the weight I put on on the higher doses pretty easily, wasn't even trying except some excerise. My weight has been kind of stable for a long time now, but lately I've been eating a lot less. And on top of that I now have very little appetite. Have been getting some of those high carb drinks here at hte hospital. I lost some weight when I first got sick, but now there's no sign of activity in my wegs. Neither in my bloodwork, nor any symptoms. Going to talk to the doc about it afterwards, so I'll see what he says. Kind of scared he's going to want to keep me here at the hospital even longer, cause I'm supposed to be going home this afternoon.

[elephant]

Elena, hopefully they will do a full blood work up on you. Need to write down everything that you eat so they can see how much you are eating ( calorie intake) and any type of activity that you do. Sometimes it can be a medication that decreases appetite, hopefully they will get to the bottom of this. Take care!

[Elena]

Finally I am officially in remission! It's the first time they've dared use that word since I got sick 3 years ago and it feels real good. I've been feeling good for a long time now, however every time I have, something still seems to be "wrong". Except this time Did a bronchoscopy and even my trachea seems to have healed a lot. No sign of inflammation or infection, just some remaining scar tissue.

It's been 6 months since my last rtx infusions, however this time they decided to hold off and see how I do without it. At least for another 3 months. They upped my imuran to 100 mg and I finally got to taper the pred a little. So now it's my second day on 6.25 mg and I haven't really noticed any difference. Going to stay at this dose until June and if everything still looks ok, I'm going down to 5 mg then. I hope I'll do ok tapering 1.25 mg at a time though, cause I looked it up and they don't seem to sell prednisolone pills at dosages lower than 2.5 mg in Norway. So I'm just having to split those in two.

My body seems to deal with meds real well. I mean I read about how badly some of you feel when tapering (even at higher dosages) or forgetting to take pred. But I've never noticed anything at all. Hoping that's a good sign!

Question: I've always taken imuran in two doses, one in the morning and one before bed. However, now I was told I could just take it all in the morning. How do you guys take it? And does anyone know if it makes any difference?