Just Diagnosed

[Luce]

Hi Lisa

I'm now six months down the line from diagnosis where I'd lost 40% of kidney function and had 4 or 5 large granulomas on my lungs.
I'm working a full 37 hour week and going to the gym 3 times a week as I too am struggling with my pred weight. I thought I'd have to pull back on work as I've recently gone back on the cyclo pills but I seem to be coping ok.
As long as I get 6-7 hours sleep a night then I don't seem to be hitting the brick wall very often, but occasionally I get in from work and spend the evening dosing in front of the telly as I'm shattered. That usually sorts me out for another couple of weeks
I understand that I'm quite lucky to be back at work so quickly, but at 25 I guess I have youth on my side and have perhaps bounced back quicker than some.
I really don't want to give up work again as I became a bit of recluse when recovering at home over Christmas - work to me means being normal and getting on as I was before WG struck.

[Sangye]

Wow, Luce-- that's so good to hear! I hope you continue getting better and stronger, and leave the whole Wegs nightmare behind you.

That goes for everyone on here! Wouldn't it be nice if someday all we had to talk about was bunnies and cows? And we'd say, "I don't even remember how we all met!"

[coffeelover]

Luce,

I am so sorry you had been stricken with this disease at such a young age. I should consider myself lucky in that at least I aquired this new BFF at double your age.
I also feel as Doug does in that I have what is called limited WG (so far) and it has only affected my airway (still have the trach) and my lungs and kidneys are fine.
I too am working full time, plus and walking and have been very active, but did notice today that I am dragging due to my last two weeks and positioning myself into such a busy schedule. I know better. I will have to doze in front of the tellie tonight and take it much easier this week. I think that dreaded pred gives me a false sense of empowerment and I know better than to fall for that!
I know stress makes me feel "not as good" and I had to fire someone today. That is not something I enjoy doing and it creates a bit of stress, even if it has to be done.
I agree with Sangye "Wouldn't it be nice if someday all we had to talk about was bunnies and cows? And we'd say, "I don't even remember how we all met!" I can say that I consider you all friends and am glad, even under these circumstances, I am getting to know such great people.
Lisa

[Shannon T]

This was my first day with chemo. I arrived at the hospital at 8:25 a.m. Five minuites early. They did not put the needle in until 11:00 a.m. and then only nausea medicine. Did not start chemo until 12:15 p.m. because my doctor had failed to forward my blood tests.

I was there 5 hours. So now I know what to expect. I will expect 5 hours and if I get out sooner I will be pleasantly surprised. But my nerves were totally shot and could not work in the afternoon.

So this is the world of Wegener's. I will be more well prepared emotionally next time. The physical part was not so bad but the stress!!!!! Live and learn.

[andrew]

well that's the first one out of the way now and you'll feel less wound up when you go next time. hopefully you'll get started earlier too! i seem to remember mine taking about four hours or so. i'd take fridays off work for the chemo and have the weekend to get over it. never really made me feel nauseous but i was completely drained and couldn't do much more than sit around watching tv.

[Shannon T]

Had my second chemo this week. This time it took 4 hours rather than the previous 5. But I was more prepared and handled it better.

I have gone from 60 mg pred to 40 mg as of today. But the doctor wants to increase the cytoxan from 750 to 950 (mg I think is the measurement). he said he wanted the t cell count down from 9 to 5, whatever that means. Seems like some good and some not as good news to me.

I started on the tread mill because of the weight concerns. I only do 25 minutes but I am really wiped out when I finish.

It feels lonely having this disease. No one has heard of it and it takes so long to explain and I am embarrassed by my lack of balance. Can't seem to get past that one.

Oh well. Thanks for listening.

[Sangye]

Hi Shannon,
Glad your 2nd chemo session went better. I was on oral cytoxan, so I don't know what it's like for you folks who get the infusions.

As far as the combo of good and bad news, here's what that means: If he's willing to decrease the pred, it means the Wegs is improving. Labwork markers of inflammation are the indicators. (Sometimes the ANCA if it's reliable for you) So lowering the pred is good news.

The purpose of the cytoxan is to suppress the immune system. T cells are a type of white blood cell that correspond to immunity. So if they're too high, it means your immune system is still too strong. He's increasing the cytoxan because it's not suppressing your immune system enough. So that's not bad news (other than no one wants higher doses of drugs--ick). It's just the trial/error aspect of jiggling the immunosuppressant dosage. Today you may need one dose to get T cells to 5, but in a few months it may be a higher or lower dose to do the same.

Take it easy on the treadmill. Don't wipe yourself out. The high dose pred gives a false sense of strength, but meanwhile it's draining your much-needed adrenals. Go for time, not intensity. Finish with a lot of energy left. Don't hit "the wall." You'll also notice your emotions will ride the same rollercoaster as your body. Wipe out physically and you'll wind up more depressed, too. It's the same chemicals.

I totally understand how lonely Wegs is. I didn't have this group (or anyone with a chronic illness) for 2.5 yrs. That isolation is a big deal. It's part of the grieving we go through with Wegs. I started seeing a therapist when I was first diagnosed, and it's helped more than I can say. If that's something that appeals to you, it helps to find someone with experience in chronic illnesses.

Keep checking in here. We can help you communicate Wegs to others. And you'll definitely feel less lonely, since we all understand.

[Rodger]

Hi all bacf to the forum after a long hiatus. My first flare up after diagnosis involved my ears. Get thee to an ENT! I got tubes which alleviated the fluid and pressure, but the meds were required to alleviate the symptoms. Slowly the muffled feeling and ringing was reduced but will occasionally come back. For example, the tube in my left ear has been working its way out and the ringing has returned.

Be prepared for the ear drainage once the tubes are in place. For me pretty heavy (and gross).

[jola57]

After consulting with my hubby, I decided not to get tubes, I'd rather live with my hearing loss than having to deal with the tubes. I can take the ringing, and not understanding somewhat when in resaturant more that cleaning the tubes or having to watch them while showering.

[pberggren1]

Jolanta,

I've had 3 sets of tubes in my ear drums. Unfortuantely they didn't do me any good. I would definitely consult with at least 3 different ENT's to get their opinions. I didn't find it at all difficult to deal with the tubes even when showering.