Update on Lisa Marie

[LisaMarie]

ok saw the WG specialist...My potassium was 3.1 so i am back on potassuim every other day ...Started Cellcept 500 mg tapering up tp 2000mg a day....have the generic it was soo much cheeper ....and may have to go up to 3000mg daily per doc...can decrease pred in 2 weeks to 30 mg ....slow but I'll take it ....getting bone density next week ....echo next month when i see the cardiologist because I have borderline cardiomegly....new thing on my chest xray....will do CT in a few months to recheck my lungs for scarring....hopefully I have none.....no ctx for now ...yeah me....praying cellcept works for me....no other options after this ...so the doc will have his work cut out for him....he even brought up the new research on cellcept before I did ...so i guess i am in good hands.....go to otolaryingologist on the 22 to be scoped and have my hearing tested again and make a decesion on hearing aides and if i need my trach re opened....hope you all have a great weekend:flapper:

[andrew]

A lot going on! Hope it all works out alright for you.

[Geoff]

Good Luck Lisa Marie, WIshing you all the very best.

[elephant]

Thinking of you LisaMarie!

[Sangye]

I hope cellcept works great for you, Lisa Marie. :smile1:

[ScreaminMeanie]

Wishing you excellent results, Lisa Marie!

[jola57]

Thats a lot on your plate, hope all will work out.

[LisaMarie]

ok up to 1000mg of Cellcept a day ...and started with that stupid chest congestion cough...ughh...gonna wait it out and see...i go up to 1500mg of cellcept on Thursday.....wish me luck that this is just a funky way by body adjust...have a greata week ...thanks for all the well wishes

[Sangye]

When I first started on cellcept I tapered up to 1,500mg over a couple weeks. By about 1,000 mg, I got a weird throat "infection" that looked exactly like strep (but cultured negative several times). It was only on one side of my throat. Several pus pockets and intense pain radiated into that ear. It went on for several days and stopped suddenly without treatment. It left huge holes and tears in my tonsils. Over the next 2.5 yrs on Cellcept, it happened a number of times--always one side (even though it switched sides), always cleared up on its own after less than a week, never cultured as infection.

I wonder if your chest congestion thing could be like that.

[LisaMarie]

Well I am tapering up to 2000mg in 12 days...so wish me luck...trying to rest as much as possible and praying this works.....still taking bactrim ds daily and acyclovir 1 tab daily prophalytic...so hopefully my congestion cough is just my bodies way of adjusting ....Thanks for the in put ...oh and i finally gotta the boring article open ...lol ...it was quite interesting..have a good day
:biggrin1:

[Sangye]

Oops, I meant to say I was tapering up to 2,000 mg in 2 weeks, not 1,500.

[elephant]

Hope is all goes well LisaMarie, I remember taking 2000mg immediatly and the cellcept was tough on my body for two months but it got better. Less side effects as the days passed.

[LisaMarie]

Ok ...Topmorrow I go get my hearing retested and decide on hearing aides and see the otolaryno to have my trach scoped and see where I sit...I failed my night ox so i need to wear o2 at night for sure for now ...still not in a very jolly mood ...tried to make cookes and got completely exhausted was in bed yesterday by 645pm....I still have candy to make and cookies ...wrap presents...ughh I hate this adjustment...i guess on positive is I ran into my mother and she said I looked great....I fake well good or she is still in denial again....i could barely stand to walk in the store but had to pick up meds so I put on my happy face and went in .....I know my life will never be what it was and am truly gratefull for all your all's support...my husband is having a difficult time with all of this....he was scared to death when I almost died in september but now is back to tired of me being sick and not being able to do anything...my tongue is still all funky so i can not even get a kiss anymore .....sorry to dump on you all...it just sometimes I feel I would be better off alone with my sons.......being married with a blended family tends to complicate things and when you are sick it seems to be even more complicated...ughh better get to work...thanks for letting me vent:unsure:

[Sangye]

:sad:The only thing worse than having Wegs is having Wegs without the full support of those you love. I hope things improve, Lisa Marie. :hug2:

[JanW]

Me too, Lisa Marie. Stay strong.

[DEE]

keep your chin up Lisamarie :hug1:

[elephant]

We are here for you and do enjoy the holidays. But take an easy, your a strong weggie!

[Brooke]

Hi Lisamarie - I hope you start to feeling better and you are able to enjoy the holidays. That would be very difficult not having the support of your loved ones, I have had a sinus infection and felt crummy off and on for a couple of months and I felt bad for my husband because I didn't feel like doing anything. I am now feeling better and wanting to do more, I hope the same for you.
Take care,

[LisaMarie]

thanks for the support ...i will let u all know what the trach and ear doc says tomorrow gonna try to make no bakes tonight wish me luck

[jola57]

Vent any time you feel like it I know first hand about what you are going thru. Sending happy thoughts your way.