All About Rituximab

[elephant]

Glad you make it LIsaMarie. Are you still on oxygen? Do you feel like your getting better each day?

[LisaMarie]

still on o2 and per the doc probably will be for a few montbs..ughh my goal is 2months ....each day is different if i push it i feel worse at the end of ghe day...o i have such a fine line to walk..but at least i am able to work some....so turtle pace is where i stay

[Nancy]

I am glad that you are out of the hospital.... Nice place to visit (sigh) lousy place to be as a patient... Take time, I kept pushing and am just coming back... Your strong spirit is what motivates and works against you... Your mother's reaction sounds like mine.. She tells my dad that she is afraid that I will die first and won't tell me.. She then asks about work and doesn't seem to be aware of the WEGS... I do not know if that is denial or "mother coping"... Having a purpose is always a strong motivator for a nurse... bu always be willing to turn that analytical thought process to yourself... as a patient... If you were the nurse talking to a person going through what you are going through - what advice would you offer? Keepin' the faith!

[jola57]

Oh why the sigh, I like staying in the hospital after surgery or if I am sick. You have: 24hr immediate help, 3 meals and snacks, daily maid, friendly roomies, what more can you ask for?

[pberggren1]

Oh why the sigh, I like staying in the hospital after surgery or if I am sick. You have: 24hr immediate help, 3 meals and snacks, daily maid, friendly roomies, what more can you ask for?

I would ask for foot and head massages.

[jola57]

Oh they used to do that too. Boy, this realy ages me.

[LisaMarie]

I guess i am to independent....and did not really like it ....i did have a private room and the best nurses ever....i even hated to ask for them to empty my commode...but i guess if i ever go in again a back rub sounds great

[Jack]

I've had private rooms in the past, but much prefer the main ward - usually 6 - 10 beds. There is always something going on and someone to talk to.

[LisaMarie]

Yes I can decrease my o2 usage.......I have seen the WG specialist and the pulmonary doc...now one more to go the ID doc next week......WG agreed to decrease my pred to 20 mg by 11/12....goal is 5 mg..i will not start Cellcept til 6 weeks after I saw him if my lungs are better..saw him 10/28....see him again in December after another follow up with Pulmonary.....He said due to my recent severe illness he can not confirm whether my WG is in remission .....so he wants to wait and see ...so i remain on pred...still have the gum line irritation along with the fish hook scar on my tongue from the virus that occured in the hospital...i still can not consistantly get up to 2000 on my IS...but got to 400 on the peak flow,...they still have no clue what fungus grew in my lungs...but my xray yesterday was great...i have to wear o2 to sleep and for any activity that causes exertion...but sitting at my desk at work I do not have to...as long a I promise to freq check my o2 sats and log then for the next visit.....yes some freedom from the cord....I still tire easily and require naps...my joints hurt.....so i am not convinced i am in remission...jaw still hurts and is swollen...was told by my WG doc no more imuran or rituximab for me...if i flare he is going back to cytoxin......ughh.....i am so sensitive to any drugs..it is the way i am wired...i just hope they find a combination that works for me soon.....I still have some junk in my lungs but it is nothing compared to what it was...yeah.....they say no WG in my lungs or Kidney's so i am thankful for being here and praying for remission or atleast to feel better...apparently i asked the doc to go home everyday even while i was in the ICU.....He said he has never met anyone like me....and it can work to my advantage at times but right now I need to take it slow and let people help me...I told him i was and I am...trust me I am......my snake skin peeling is almost done ....talk about freaky side effects of being sick .....one heck of a way to get a spa peel ...hehehe..atleast thats what my co workers say...hope all is well with you all......well I better go ......taken enough of yall time...thanks again for all your prayers and well wishes......love ya all

[elephant]

I was just asking about you on another thread. Nice to hear your lungs are improving! I agree if your still having joint pain, you probably aren't in remission yet. Thinking about you!