Sorry, should have made that clearer I guess. He currently has 5 WG patients. He seems to know what he's doing. Spends an hour to an hour and a half with me at every appt, answering questions, telling me side effects and what to look for, be careful of, prepare for, etc. He and my Pulmy are working as a team to get me better. I have confidence in him (until I have reason not to). I will however ask him about getting a VF consultant involved.
I have to agree with Sangye misskay about seeing a Wegs specialist and that a doc or Rheumy who only sees 5 or so Wegs patients is no better that seeing one who has not seen Wegs at all.
Lola, that is interesting about the tooth paste and mouth wash. Thank You.
Misskey, elephant, and Lola and everyone else for that matter. I have improved quite a bit since I went back on the Bactrim last week on Tuesday. I am taking 2 tabs twice a day. I also started taking Pulmicort nebulizer spray up my nose. It is helping as well. My new ENT prescibed this.
That is good Misskay that your Rheumy spends a lot of time with you at each appointment.
Thanks Sangye.
I see my new doc tomorrow. Hopefull he will have heard back from the lab and will know what the bacteria is in my lungs.
My energy is up and my sinus headaches are almost non existent. My right nostril is doing much better and the mucuc and crusting are much better as well. I think it is the Bactrim - 2 tabs twice a day, and the Pulmicort up my nose that is helping. I am still coughing up bloody mucus though.
My Rheumy called me back last night and wanted to know what was going on and how I was doing. I gave her a breif run down and told her I would get my new doc hear to send her all the test results and a letter telling her everything that has been done so far.
I worry about you as well Sangye. Especially with this vertigo and hearing loss thing. It down right scares me.
Aww, please don't worry about me. It'll be okay one way or another. You guys all suffer much more than me.
I'm really glad you're feeling so much better. Made my day to hear that.
Ditto to that!
Not sure about that Sangye, you certainly see your fair share of crap and you occupy quite a high position on my Crip list.Originally Posted by Sangye
Phil and Sangye both take care of yourselves DEE xx
Hope you both are feeling better soon, WG has a lot to answer for but at the same time if I didnt have it I would never have discovered this community and although i dont post very often i love to read how u all are and what u have been upto it has become one of my daily rituals. People have told me in last few days I have some colour back in my face and I look well so think dialysis is starting to work still tired but not as bad. I am off to do my 2nd 3 hour session in an hour, but I best do some cleaning up first, both kids staying at grandparents tonight so i can come home and chill once ive done. The little one is coming with us to drop me off at the unit, he wants to have a look round he wants to have a look at a dialysis machine and to see what it does to mummy i think he is worried about it all. He is very inquizative and likes to know whats going on and how it all works and although he is only young he takes everything people tell him on board, so going to see if the nurses will let him in for a couple of minutes to have a look at a machine. I can explain how it works and then he will be fine. I must say of us all apart from me, WG has probably hit him the hardest with me being in and out of hospital at the beginning and again earlier this year he also came with me once when I had to go in for my cyclophostamide, but he takes it all in his stride if he can see what is being done to me rather than just hearing about it. Poor thing he is only 8 but so aware of what is goung on around him. Oh well distraction over going to have to get the sweeping brush out will look forward to reading more of what u r all upto when I get home later.
Lisa
LinkBack URL
About LinkBacks
View Profile
View Forum Posts
Reply With Quote