Joey was discharged from hospital today. They figure he is about 85% clear, so we need to keep working on that other 15% and then hopefully the preventative plan will work. He is seeing the GI again at the end of the month to make sure that things are back on track.


Bowel Break

Today Joey tried to do yet another bowel clear out with the Go-Lytle. He is still on the clear fluids diet to give his bowels a rest. Tomorrow they are going to take an X-ray to reassess him and see if the plan of attack worked. If so, prevention is going to be stepped up to try and curb any other DIOS flare ups.

Our fingers are crossed that he can come home tomorrow, but we’ll have to wait and see.


Nope, it’s DIOS

News from Joey: this morning the radiologist reassed the CT scan. They figured that the colon is clear, but Joey has DIOS (distal intestinal obstruction syndrome), but not a really bad case. He is now on clear fluids to give his bowels a rest and will see the GI tomorrow.

Should be interesting to be on a clear fluid diet when he’s on fluid restrictions…


PS If you’re wondering what DIOS is, I found this explanation on www.cysticfibrosismedicine.com

The distal intestinal obstruction syndrome (DIOS) is a unique condition to cystic fibrosis (CF). It occurs due to the accumulation of viscous mucous and faecal material in the terminal ileum, caecum and ascending colon. Typically patients develop progressive symptoms of recurrent colicky abdominal pain, bloating, nausea and anorexia, and signs of small intestinal obstruction. It has not been described in other forms of pancreatic insufficiency although it has been reported in patients with cystic fibrosis who are pancreatic sufficient and have normal fat absorption (Millar-Jones et al, 1995, Davidson et al, 1987).

The syndrome is relatively common, occurring in about 10-20% of patients (Penketh et al, 1987, Davidson et al, 1987, Rubinstein et al, 1986). It may present either acutely or chronically and can be easily misdiagnosed by those who are unaware of the condition. DIOS may occur at any time after the neonatal period and the incidence appears to increase with age and to be more common in adolescent and adult patients. Contributing factors include fat malabsorption (Andersen et al, 1990), abnormal intestinal mucins, low duodenal pH, low dietary fibre intake, possibly a prolonged transit time, previous meconium ileus, abnormal intestinal water and electrolyte transport, and anticholinergic drugs (Eggermont 1996, Wilschanski et al, 1998). Dehydration associated with the development of diabetes mellitus may also precipitate DIOS (Hodson et al, 1976).


DIOS is a well recognised complication in the early post transplant period. It occurs with increasing frequency due to dehydration and drug therapy. Effective preventative measures and early treatment are important if severe complications are to be avoided (Gilljam et al, 2003).

Back in Hospital

Cutting back on the ultra filtration days has been going well. Still not too much happening on the urine front though. Joey’s kidney doc said that we will probably get some indication of whether or not any kidney function will return in the next month or so.

We met with the GI (stomach doc) today. Joey has to be admitted to hospital again (St. Michael’s this time; it’s where the CF clinic is located). They aren’t sure what the problem is at this point, so they will need to do lots of tests; it will probably take a while before we have any idea of what is happening (I would guess the middle to the end of next week before we get any answers). From what we described to him, the GI thinks that there is probably a partial blockage somewhere in the bowels, but we’re not sure what might be causing it at this point, or if that’s even the problem. There could also be kinking somewhere along the intestines, or it could be some sort of parasite, or it could be related to his immunosuppressant medications.

So that’s what we know so far. Yippee. Hospitals rock. Hopefully it won’t take long to figure out what the problem is so that it can be fixed.

Kirstin and Joey

New Lungs are the Bomb

Things are still looking good on the lung front. To put last week’s PFT results in context, usually improvements max out at 4% from week to week, so a jump of 22% from one week to the next is cause to celebrate. This week Joey is hanging steady at 70% (nothing to complain about there). Even though his results are stable this week, other numbers are indicating that his lungs are expanding more and holding more air. Right on.

The rest of the week has been less than impressive on the kidney front. Monday was the great day, the rest of the week was fair. Could be worse, but could definitely be much better. One positive: the kidney doc is going to let Joey try cutting back on one of the ultra filtration days and see how that goes. Hopefully it will go well.

Now for the crap (or lack thereof) news. Joey’s stomach has been rebelling against us. His bowels have been acting up big time since he’s been discharged. He is averaging about one bowel blockage a week. When that happens he has to drink at least 4 litres of go-litely (or not so “litely”). This means more fluid retention that has to be taken off by dialysis. He always had problems with his bowels because of his CF and the painkillers that he has to take don’t help matters. Apparently dialysis can also dry people out, so that’s probably adding to the problem. He has an appointment at the GI clinic next Friday, so hopefully they’ll have some ideas, but I’m not expecting any miracle solutions.

Nice how I took you from elation, to middle ground, to the depths of despair, hey? Did I mention that there was a bomb scare half a block away from us this afternoon? Let’s end on a good note: there was no bomb and Joey’s lungs are working. Happy Friday.

K & J