Rhonda checking in

[Guest guest]

Hi Liz!

After our last GI appointment when the doc wanted him on Humira I called

and told him we would hold off for a month and we could talk again

then. Yesterday we went for that " one month later "

appointment and after seeing that had gained 9 pounds in the 4

weeks was much more positive about the diet. nudged me to ask

his doc about LDN and he shocked me by saying he would be happy to look

into it and wants information on the PA studies. He also wants to

contact the PA studies to see if can participate from CA.

Although we were considering putting him in the trial, the 8 cross

country round trip flights in 4 months priced us out of the notion.

's fistula (with 2 openings) remains pretty large with lots of

drainage. Our doc heard both and I when we expressed our

fervent desire to NOT go that direction. While he checks into

LDN he is going to put in the hospital and have a pic line put in

so we can give him antibiotics for the fistula from home (and not have

them go through his GI tract.) He has to go to the hospital for a

few days to get all set up and for me to learn how to care for it.

I'll be making lots of food ahead of time and bringing it to him at the

hospital. I'm thrilled that both our general practitioner and

's GI specialist are supportive of the diet now! They both

have remarked that he looks " healthy " and I agree.

Meanwhile it appears that the cysts that were found in my kidneys and

liver a few years ago have started to actually effect my kidney function,

so I'm even more tired than usual, etc. etc. My one happy

thought is that I pee often and pale instead of having difficulty peeing

and it being dark and bloody. I have an appointment to see my

kidney specialist in a few weeks, I'm getting my ultrasound scheduled,

just doing what I have to. I haven't spent much time at the

computer. Between getting meals cooked, shopping and doctor

appointments I'm exhausted and have been napping on the couch with the

stove timer set. I am hopeful that I'm experiencing a combination

of the kidney disease and the 3 month mark of major die-off.

Nothing to do except keep on keepin' on and we'll see. Meanwhile

I've got to prepare for 's hospital stay. Hopefully the nurses

will allow me to use their fridge for his yogurt. If not, I'll be

hauling in a mini fridge for his room! LOL.

Rhonda UC, PKD

son, 16, CD (17 on Oct 4th! omg)

SCD 3 months

Rhonda,

I know this is OT for this thread, but how is ? I haven't seen you

post for a while and you were having to make some decisions about

medications last time I saw one. Just wondering! (You were so helpful to

me my first week here that I always look to see if you have

posted.)

Liz