Re:Rhonda checking in

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Rhonda,thank you for the update, and thanks, Liz for asking.Glad has been healing, and we'll look for same for you.RuthRhonda checking inPosted by: "Rhonda Roman" rhonda@... happy2b3rThu Sep 24, 2009 12:23 pm (PDT)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 positiveabout 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, PKDson, 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.)>>LizBack to topReply to sender | Reply to group | Reply via web post Messages in this to