Tired
Awfully tired. survived the trip to Milwaukee. Both doctor and nurse practitioner put their heads together with me. We discussed all of my options. Right now we are going to proceed as follows:
Start cellcept tomorrow if liver and pancreas enzymes are okay (Neuro is a bit nervous that I may have auto-immune hepatitis and I don't even want to go there) so she is screening before starting cellcept. Either the cellcept will go better than the Immuran and prograf or she will have yet another unable to tolerate med on the list to show the insurance company. Thymus MRI with and without contrast next week to ensure no thymomas. Neurologist said that technology has recently improved to help differentiate tissue better in chest cavity.
I will have Closer follow-ups with them including biweekly blood work. Continued IVIG while doing the cellcept. No exposure to illness which might mean extra precautions. NO FLU SHOT, but those around me must have theirs.
She did say I could water walk for 10-15 minutes, twice a week, if I have no bulbar symptoms that day like hoarse voice. Those are a lot of ifs and highly unlikely until immune suppressant kicks in and then I wonder if I want to be in public pool. I think I will try the walking videos at home. Might be a bit more taxing on my lungs, but I do have bipap.
She is not going to give up on me and said that we will continue to badger the insurance company. I am going to look into disability, although the nurse practitioner thought that part D to cover meds doesn't kick in right away. If push comes to shove or I get worse, there is also Cytoxan (sp) to consider, but neuro felt that the side effects for this might be quite significant. Depends on how bad my immune system needs a reboot.
It was nice to have us all on the same page. I shared my despair that I felt when insurance was denied and she was very understanding. I also told her that I do not quit, sooo
Starting the cellcept tomorrow. Lets hope this one doesn't land me in the hospital. Nicole is taking me for the MRI's next week. Will be nice. I go to her ultrasound to see baby wood again next Tuesday. Will it be wrong for me to ask the technician to focus on the pelvic region.
Wyatt sang in church this afternoon at 3:30 for advent service, so I just got home from Milwaukee in time to jump in his mommy's car and go to church with her.
Now, I've written a book, but knew some inquiring minds wanted to know. Thanks for the prayers, dear ones.
Start cellcept tomorrow if liver and pancreas enzymes are okay (Neuro is a bit nervous that I may have auto-immune hepatitis and I don't even want to go there) so she is screening before starting cellcept. Either the cellcept will go better than the Immuran and prograf or she will have yet another unable to tolerate med on the list to show the insurance company. Thymus MRI with and without contrast next week to ensure no thymomas. Neurologist said that technology has recently improved to help differentiate tissue better in chest cavity.
I will have Closer follow-ups with them including biweekly blood work. Continued IVIG while doing the cellcept. No exposure to illness which might mean extra precautions. NO FLU SHOT, but those around me must have theirs.
She did say I could water walk for 10-15 minutes, twice a week, if I have no bulbar symptoms that day like hoarse voice. Those are a lot of ifs and highly unlikely until immune suppressant kicks in and then I wonder if I want to be in public pool. I think I will try the walking videos at home. Might be a bit more taxing on my lungs, but I do have bipap.
She is not going to give up on me and said that we will continue to badger the insurance company. I am going to look into disability, although the nurse practitioner thought that part D to cover meds doesn't kick in right away. If push comes to shove or I get worse, there is also Cytoxan (sp) to consider, but neuro felt that the side effects for this might be quite significant. Depends on how bad my immune system needs a reboot.
It was nice to have us all on the same page. I shared my despair that I felt when insurance was denied and she was very understanding. I also told her that I do not quit, sooo
Starting the cellcept tomorrow. Lets hope this one doesn't land me in the hospital. Nicole is taking me for the MRI's next week. Will be nice. I go to her ultrasound to see baby wood again next Tuesday. Will it be wrong for me to ask the technician to focus on the pelvic region.
Wyatt sang in church this afternoon at 3:30 for advent service, so I just got home from Milwaukee in time to jump in his mommy's car and go to church with her.
Now, I've written a book, but knew some inquiring minds wanted to know. Thanks for the prayers, dear ones.
Replies
Debbie,
thank you for updating us on how you are doing and the attack plan of action. I know it has to ease your mind some knowing what is going to happen.
I am glad that your doctors are on the same page as you, to get you better.
luv and hugs,
Annette
Thanks for letting us know how things went. So thankful you have a good doctor on your side! Sounds like a good plan.
Hoping the cellcept/IVIG plan works gives you your strength back!
hugs and love
sherry
A shot of hope instead of killed influenza seems to be what the doctor ordered. You know we are with you all the way. Did Nicole hear the part about no exposure. I still remember her bringing Grayson over with a hgh fever to have you look at his throat! Mommies are invincible. It is hard to get anything else across when we look good. I heard that about three times this morning as I was trying to get down three doses of Mestinon so I could function. Rough start, but ended with The Muppet Christmas Carol! love to you, b.
Good luck with the Cellcept! Glad things are coming together for you!! It\'s nice to have everyone working together!!