random wegners questions of the day...

[delorisdoe]

1. How often do you think of wegners?

When I was first diagnosed it was on my mind while I was awake. It was all I thought of until the side effects of 100mg of prednisone and cytoxan took up some of my time. I think it took me aproximately 5 years to stop thinking of it all of the time. I stopped checking for blood in my cough, kleenex and the toilet about a year ago. Now that I am flaring again it is all I think about. I also catch myself constantly checking for blood all over again. Got a real strange look at the grocery store for doing that the other day. lol

2. what does blood in urine look like?

I know you cant see trace amounts that are brought on from infections but what if there is a significant amount? would it not just change the colour of your urine?

thanks.
leigh

[Chris G]

1. Sadly, I think about it almost all day, every day. Even if I'm having a relatively good day (which isn't very often), the lack of energy & fatigue remind me that the disease is lurking.

2. I don't know how much blood is necessary for it to become visible in urine, but it will start out being darker than usual, and if it worsens, it will turn light brown, then dark brown, etc.

[pberggren1]

I think about Wegs every day. I don't obsess about it, but I do think about it a few times a day, like when my next doc appointment is, what are my blood results, will I really need a cochlear implant, etc.

I have never seen blood in my urine but I had trace amounts show up in my last urine sample so my doc orderd an ultra sound of kidneys and uring culture and cytology to cover all bases and play it safe.

[elephant]

I think about Wegeners every time I do a sinus rinse and every time I blow my nose. I think about it alot!

[Terri]

I try not to think about it but when it is with you you day in/ day out it is a little bit hard to ignore.:sad:
The best advice I've ever gotten was to not say or talk about "my disease"
It is "a" disease yes but we don't have to claim it as our own. This is what works for me.

[ArlaMo]

I'm still under a year since my diagnosis, so it is on my mind a lot! All the meds, the daily nasal rinsing, the coughing, the fact that I should buy stock in Kleenex...

I had trace amounts of blood in my urine when I finally got diagnosed, but nothing since then so I'm not much help there.

[drz]

I was diagnosed last April and had lots of questions and thoughts about my treatment. I think about Wegener's disease less and less but do spend a lot of time taking care of my health care needs like getting meds for Wegener's and diabetes, seeing various doctors, checking blood glucose levels several times a day, going for lab work, X-RAYS, today nebulizer treatment, etc. I think about it when explaining my health history to a new doctor like seeing pulmonary doctor today cause I might have bronchitis but don't want it to turn into pneumonia. He put me on preventive antibiotic because of history of lung damage from Wegener's, taking Imuran meds now and prednisone which make me vulnerable to infection. I think about it when explaining to someone why I can't hear them or walk very well when they run off down the hall and expect me to keep up. Dealing with the consequences of Wegener's, diabetes, and having a cold at present make me aware that i have varous limitations from my illnesses and I have to include time and tasks to manage them.

Diabetes is much more demanding for me than Wegener's since it is a 24/7 task with no relief. Eating becomes a task that must be done on schedule and monitoring of every meal and in between meals is necessary to adjust insulin levels around the clock. I have to check blood glucose levels several times a night to be sure I am not having a prednisone induced low when I come down from a prednisone induced high. These tasks have a high priority if I want to stay out hospitals and emergency rooms, but i also try to include other tasks or things to do each day as time and energy permit. I wish I could do more fun things but my energy is limited (spoon theory) as is time so I don't want to give Wegener's disease any more time than is needed to manage it enough to allow me the maximum level of functioning I can attain so I can do other things that are more fun.

On the question of blood in urine, I never knew it till I had lab work done and it was reported to me which lead to two CT scans which increased my kidney damage. I think it has to be quite heavy before you can notice it but you can have lots of kidney damage or other problems by then so routine urine tests are needed to monitor your health.

[Sangye]

Terri, I'm with you. I don't like to say "my Wegs." The few times I've done it are because I can't think of another way to say it--maybe late at night, etc.... I always wince if I say it. I prefer to say "my case of Wegs" or something like that. That's also why I talk about "the Wegs dog."

Even so, Wegs is on my mind a lot. I've never had a time in 5.5 yrs when I wasn't experiencing tons of symptoms, so it's natural. I do work on the anxiety behind my thoughts and engage in a lot of other activities where Wegs is not the topic.

[gurinbasra]

I don't think about Wegeners too often but it's in my face every single waking moment of my life in my ears and with my hearing loss (has been for 3 years now). My ears start hissing, pinging and dinging and making all sorts of noises as soon as I'm awake and I really miss having quiet time (I have to have it with the noise) and I'm constantly struggling to simply "hear" - very draining. I only really think about Wegener's on a day I'm not feeling well but that's only so that I can focus on why I'm not that well again - the fear of "what's happening now", but even that has lessened now and on most good days, I'm living it up and enjoying my life.

Fortunately, no kidney issues so urine has always been clear.

[NicShaf]

I think about Wegs all the time. I'm only a couple months from my diagnosis, so it's still fresh. I found that going back to work, and getting back to everyday activities, such as cooking and some light chores, has helped take my mind off it a little bit...a small distraction maybe...but really, it's hard not to think about all the time, it affects every aspect of my life on a daily basis, even on good days.

I have no kidney involvement, so I haven't seen blood in my urine, sorry I can't help with that question.

[Daggar]

........ On the question of blood in urine, I never knew it till I had lab work done and it was reported to me which lead to two CT scans which increased my kidney damage. I think it has to be quite heavy before you can notice it but you can have lots of kidney damage or other problems by then so routine urine tests are needed to monitor your health.

Just to add to what DRZ mentioned -- Kidney issues can be very silent for some people until function has deteriorated below 40-50%. Keep up with the lab work and watch for changes in your serum creatinine and urea. Blood and increased protein in urine is also a good indicator there could be a problem. If you feel pain in your lower back near the kidneys (either side) at any point I would bump up scheduling for lab work to make sure it isn't kidney involvement. If caught quick enough the kidneys can recover fairly well without too much scarring but if left too long the damage is permanent which leads to further loss of function in time.

Then the balancing act begins....

Kidney Damage = High Blood Pressure ...................... High Blood Pressure = Kidney Damage

Thus the need for bp meds and when pred is thrown into the mix it becomes quite the challenge.

[drz]

I don't think about Wegeners too often but it's in my face every single waking moment of my life in my ears and with my hearing loss (has been for 3 years now). My ears start hissing, pinging and dinging and making all sorts of noises as soon as I'm awake and I really miss having quiet time (I have to have it with the noise) and I'm constantly struggling to simply "hear" - very draining. I only really think about Wegener's on a day I'm not feeling well but that's only so that I can focus on why I'm not that well again - the fear of "what's happening now", but even that has lessened now and on most good days, I'm living it up and enjoying my life.

Fortunately, no kidney issues so urine has always been clear.

I think those of us with hearing issues find it exhausting and frustrating to try communicate in a noisy setting where we miss most of the conversation. For me I also find anything that requires some concentration or mental effort is also very tiring. Maybe this partially due to prednisone or cognitive loss from illnesses and treatments. I often joke with people that I take stupid pills (prednisone) to explain why I am not as sharp as I used to be.

[vdub]

I think about it all the time... It can manifest itself in so many ways and different locations such that I am now hyperaware of every ache or "not normal' feeling in my body. Could it be wegs, old age, medication side-effect, or simply nothing, but everything gets analysed to some extent. Currently, joint and muscle pains are my major problems. They just don't go away.... They are always there to remind me that life will be different from now on.....