Surgery Scheduled Next Week!

[Lila]

That was excellent information from all of you. I actually called Dr. Ishii's office again today and spoke with the receptionist. She said the doc wasn't in today but she would have her call me back on Monday to answer my questions (kinda cutting it close since the surgery is Tuesday).
Jan, I remember you telling me about Dr. Lebovics now. He is in NY right? I guess my sis wants to keep all of her care at JHU (Sangye, you know how stubborn she is!) Yes, Dr. Levine referred her to this surgeon and my sis really trusts Dr. Levin's opinion. Unfortunatly, I haven't been able to make it to her last couple of appoinments, so the questions that should have been asked, never were. Apparently the surgery is a 'External Rhinoplasty'. It is all just so odd because no one told her to stop her Methotrexate, Pred, Ibuprophen, pain meds or Enbrel Injections 2 weeks ahead. She stopped on her own cause she is familar with having surgeries. One thing she did say that Dr. Levine said was "you are ready for the surgery, and we want to get that trache out soon, because I don't feel like you need it any longer"
I do have a bad feeling, and I've expressed to my sister. But, it seems like she's gonna go ahead with it. I just pray to God that it's the right decision. We ALL know we can bring a horse to the water but we can't make em' drink!!!
Today she said she doesn't want a perfect nose just a funtional nose and one that everyone doesn't stare at. She was in the grocery store a while ago and a little kid yelled out "Mommy, look at how tiny her nose is". So, I can understand WHY she NEEDS this more than WANTS this.
Thanks so much for ALL the info, advise and support! Sangye, I'm so FREAKIN happy that you are doing better!

[Sangye]

You've done all you can do! I understand wanting to keep all her care at JHU. All my docs are there except for my PCP and an awesome dermatologist (who I don't need to see at this point). I hope it goes well for her at any rate.

[Lila]

Thanks so much Sangye! Did you go for your follow up with Dr Seo yet? I would have updated this sooner but I've been staying with my sis and she's still living in the Ice Age with no internet access! It seems like her surgery went well! The doc informed her that there are 'no guarantees', but she really believes this surgery will work. It's amazing what they can do now a days. They took donor cartilage and put there. She almost has no pain! Thank God! The doc did email me back Sunday evening and answered all my questions, which made us feel much better! I hope u are well! Please let me know how ur appoinment went!

[Nancy]

Hi Sangye -
I wanted to FU with you on your treatment with the rituximab. My Wegs doc wants me to take that as the cytoxan was not effective as usual. I applied to genetech acess to care - they have initially denied me based on last year's tax forms. But appealing due to this year's lack of work.... How do you feel that this medication is working for you... I have been researching and reading and find such varied accounts - I do not know what to expect and my wegs doc - just told me to get a tetanus shot due to B cell destruction and the need to go on B cell memory for about 8-9 months. Any experiences, thoughts would be appreciated...
Nancy

[Sangye]

Nancy, I just started a new thread after my appt today. Also, the thread "Rituximab Round Two" contains all my updates about rtx. It's strayed off topic now and then, but I keep bringing it back on topic, so the whole thread is useful reading.

In a nutshell, rtx is the only med that has gotten the Wegs under control for me. Ctx failed (twice). Mtx failed after I had an allergic reaction to it (pulmonary infiltrates). CellCept barely contained it. The only thing left was Rtx.

[LisaMarie]

Nancy
Please let me know how your plea with RTX genentech goes I too am appealing them to provide the medication for me....I am in the "we are reviewing your information " stage...I had to send them the last months proof of income to show we make considerably less than before.....I wish they would just approve it for WG...I am also still trying to convince both insurances (I have Aetnea and Blue cross Blue Shield)...it would be more cost effective in the long run toapprove RTX then not. I have trach stenosis with right sinus , jaw and gland involvment...my understanding is that RTX will calm WG down better and faster than the other medications...I am on methtrexate and predn now but the methro makes me vomit for 2 days then I am nauseated for 3 more.....I hope and pray Genentech approves us both...Have a great day

[Sangye]

Lisa Marie, what reason did your insurance companies give for denying rtx coverage? I've been through it, and maybe I can help.