Checking in

[Guest guest]

Hi, everyone. I am finally caught up reading messages to the group and

like everyone else am happy to hear about the progress has made

following his transplant. and Bobbi, hopefully the recovery will

continue on course and the elevation in LFTs will be remedied.

It's already 3:48AM in central Missouri and I have not been to bed

yet. I can't take RX medicines for insomnia (sleep cycle disturbance)

caused by my PSC because of side effects so I simply go to bed about

this time and get up 7 or 8 hours later. My husband Jim has an

appointment with his dermatologist to have some suspicious lesions on

his chest and back removed this Thursday morning. The only available

appointment unless we wanted to wait another two weeks is at 9:30AM.

Jim has made arrangements to get there using services for the

disabled, and I will pick him up after the appointment. I'll have to

get up and help him get bathed and dressed and then go back to sleep.

He has neurological problems and had a shunt installed in his brain

last year because of hydrocephalus (fluid on the brain) and still

suffers from ataxia. He can drive but prefers not to. He will take his

new four-wheeled walker with a seat which I assume the van driver will

load and unload for him. Later today (Wednesday) is his last

appointment with his physical therapist for problems with his

shoulder. Then we will see his orthopedist regarding the shoulder on

Friday. He will have an MRI of the thoracic spine ordered by his

neurosurgeon next week followed by an appointment with his

neurosurgeon to reset the shunt which will be affected by the magnets

of the MRI. Maybe the MRI will show why he still can't walk unassisted

even though the hydrocephalus is under control.

I have been doing okay with my PSC and am taking lots of RX medicines.

I supposedly had mild ulcerative colitis and was on Asacol for a while

until my GI doctor did another colonoscopy and said my colon is

perfectly clear, so I am off the Asacol. I might have mentioned that I

think taking Asacol might have been what was causing me to have

seizures. Since going off Asacol and continuing to take Xifaxan (2

tablets three times daily) which is an antibiotic used to reduce the

amount of ammonia in the system, I have been having much less brain

fog (hepatic encephalopathy).

I am thinking of attending the conference in Chicago but am wondering

how I can do so because of my messed up sleep cycle. How does everyone

else plan to deal with the fatigue and insomnia caused by PSC? My

daughter will be moving from Naperville IL to Aurora IL the end of

this month, so I could stay with her, plus my good friend Penny Weller

is also welcome to stay with us, or I could stay at the hotel where

the conference is being held, but either way, I am concerned about the

schedule. I'd like ideas from other members of the group on how to

participate at least part of the time. It would be great to be there.

Time to stop rambling and get to bed.

Margie in MO

PSC DX 3/99