Back from the urologist appt.

[AnnaG]

First off, is this site running slow as the stone age for anyone else? It's driving me batty....er, battier.
Anyway, today's appt was a total waste of time. I went in there and after waiting 45 minutes he walks in and tells me there are to tumors on my kidneys and he doesn't know why I have hematuria. Well for God's sake my GP could have done that. I asked him what my blood tests said about my kidney function and he said he doesn't know!! OMG. I was so disgusted I left.
So my appt with the pulmonologist is next thursday and I hope he has a few more brain cells than this uro did. UGH.

[Sangye]

Tumors on your kidneys??

You need to see a nephrologist, not a urologist. Nephs are kidney specialists.

[elephant]

Anna what a bummer, don't go back to that guy. Like Sangye said go to a Nephrologist. I see one for my kidney transplant. Good luck with your pulmonologist next thursday. Hope it goes better than the urologist. :)

[AnnaG]

Yeah, I kinda wondered if he got his degree from Quickee Mart or something.
My GP referred me to him is the reason I went to him. Of course my GP will get my opinion. I'll see what the pulmo has to say on thursday and go from there. I hate all these stupid appts. It seems like such a huge waste.
How are you guys doing? Have any croissants lately? :P

[jola57]

Anna what a dork of a doc. The pulmo will give his opinion of your respiratory system but you still need to know anout the blood in urine. Nephrologist is a good idea, why don't you call your family doc and have him refer you to a nephrologist that knows about Wegs.

[AnnaG]

Yeah, after my pulmo appt on thurs, I have an appt for a TB test on the 22nd and an appt with my GP on the 26th. If there are no satisfactory answers at that time I will definitely ask my GP for a referral to a nephrologist. I honestly think that the pulmo is a smart one, he is not a young inexperienced doc like the uro is. Also he will have the results of my full lung CT on the 18th. He should be able to give me something of an answer or god forbid, order more tests. I hate this feeling of limbo in not knowing what is going on. The tests aren't that bad, it's just the sitting and waiting to be seen that seems bad.
My sinuses and lungs are still acting up. And still have pitting edema in my lower legs. The edema has been going on for some time but I don't know if it's related or not. Probably just a circulatory issue. I remember when I had my hysterectomy that the he said I have varicose veins in my abdomen and so I imagine that would cause circulatory issues. I just have a weird anatomy!!!!!!

[elephant]

Anna, did your GP say anything about your pitting edema. That could mean many things going on. Heart, Lung, Kidney or other. My Rheumy and Kidney ( Nephrologist) is always checking this.
If I remember correctly TB can be false/positive. On a CT scan it could look like TB but it's not.
Did your GP do a creatinine and bun ( take blood to check the kidney level). Then they have you pee in a cup to check if it is clean of WBC, protein, and red blood cells. Then if that doesn't look good then they do a 24 hour urine , that's when you pee in a container for a 24 hour period.
Anna hope you get checked up soon! :)

[Sangye]

Anna, I suggest you really lean on the pulmy for answers and action. You can't afford to wait week after week.

[JanW]

And also, just as a point of reference, before my WG was diagnosed by a rheumotologist, my pulmy told me that my nodule (I have a single one, about 3 mm) was probably caused by a previous infection (and indeed they are very commonly picked up on CT scans and are most often nothing), and told me that I didn't have to worry about it. Now, of course it's all part of the WG picture, so they count me as having throat, nose and lung involvement.

As for why I was seeing the pulmy -- shortness of breath attributable to asthma -- turns out I don't have that either, in fact my shortness of breath is doing to a narrowing of my windpipe that likely occured five years ago -- again due to WG. I'll have surgery on that at the beginning of March.

[elephant]

Jan, I can't wait till you get that done. I'm sure you will feel so much better! March is coming soon.

[JanW]

I know. It's scary, but I keep just trying to focus on the positive and how much better I will feel. Hard to imagine since I've made so many accomodations to the shortness of breath and I feel pretty good right now.

[AnnaG]

Yeah the pulmo pulled 3 tubes of blood to check various things. He's looking at 3 or 4 things actually. I forgot exactly what. But I think kidney function were some. Probably going to run the ANCA again to see if it's still positive like last year. Forgive my typos, I took a Lunesta tonight determined to get some good rest and it's kicked in sooner than I thought it would, Goodness, I feel a bit flighty. O.O Sory of floaty and lazy. Goodness.
Any way what was I saying...well I gave no clue, I best go sleep this off as I feel nearly ready to start gigling. :O

[elephant]

Anna hope you got some good sleep. Hope you find your answers soon regarding your lab work. :)

[JanW]

Hope you got some good rest, Annie. Hope you get answers soon.