This roller coaster ride is getting even crazier!! On Tuesday, David ended up back in the hospital (his third hospitalization in less than three months!). On Monday, he was extremely fatigued & a bit confused & by Tuesday, he was extremely confused. So, off to the emergency department we went once again, where they ran blood work; cultures on his blood, urine, & stool (looking for a new source of infection); & an abdominal CT to recheck the abscesses in his liver. What they found was that the level of ammonia in David's bloodstream was sky high & the brain is very sensitive to ammonia -- it first causes somnolence, then confusion, & then coma. As I understand it ... one of the byproducts of the protein we eat is ammonia ... it gets broken down by the intestines, put into the bloodstream, & then cleared by the liver. Somewhere in this physiological process, David's body is not getting rid of the ammonia (the doctors are hard pressed to say that the liver is the issue because David's liver values on blood work look pretty good & his liver doesn't look that bad on imaging studies). So, they are calling what he experienced metabolic encephalopathy. The solution to this problem is to keep David's bowels moving frequently (the goal is to have two to three bowel movements a day), so the ammonia doesn't build up in the bloodstream. After five years of aggressively trying to keep David from having daily diarrhea (imodium an hour prior to every meal & tincture of opium as needed to keep the diarrhea at bay), we are adjusting to a new routine! David has completely cut out his use of imodium & tincture of opium (which is pretty freeing because we now don't have to time David's meals to when he took imodium), & is working on what amount of lactulose (a laxative) to take to try to meet the goal of two to three bowels movements a day. The turn around with this simple solution was astonishing -- within about 12 hours, David went from being nearly comatose to nearly back to his baseline!! Okay, I think that is enough information about David's pooping!
David was discharged from the hospital on Thursday afternoon. On Friday, we had an appointment with his infectious disease doctor to reassess the hepatic abscesses & biliary tree infection. For the first time since his initial hospitalization in February with the liver abscesses, the abdominal CT he had done on Tuesday demonstrated that the abscesses are stable to decreasing in size instead of getting bigger -- yes! So, our plan is to continue on the IV antibiotics (Zosyn) for another three to four weeks & we have added an oral antibiotic (Bactrim) as well to help keep those bacteria from becoming resistant to the Zosyn. We will repeat an abdominal CT in about three weeks to see how the liver & biliary tree are looking. On Friday, David also had his cholecystostomy tube rechecked by interventional radiology. It was a quick injection of dye into the tube & fluoroscopy to follow the movement of the dye, which demonstrated that the cystic duct, which moves bile from the gallbladder into the biliary tree, while narrowed, is now open (on a recheck done last week, the cystic duct was plugged). So, good news all around on Friday!
This weekend has been a combination of getting some much needed rest along with David moving forward on selling his final business holding, which is a priority for David. The week coming up has only four or five medical appointments for us, which is dramatically decreased when compared to the past couple of months. Hopefully we can keep it that way & truly begin to make some headway on getting David's strength, endurance, & weight (he is now weighing in at about 150 pounds) back up to better levels. He is determined & I am devoted, so we'll see if we can't make these things happen!
Hope this finds you all enjoying a wonderful weekend! Hugs to all, Janet
I for one am OK with hearing a good poop story! Keep up the sense of humor!
ReplyDeleteLove you two,
Rick
Dave and Janet, It was great to visit with you guys again. It's always fun to swap stories about everything from soup to nuts and to catch up. I find it both insightful and inspiring. You are both very special people. Hope you've had a chance to regenerate after a challenging week. Talk again soon. Cheers, John
ReplyDeleteHi Dave and Janet, just checking in to say I am thinking of you both and hoping Dave has continued to improve from the metabolic issues and that the abcesses continue to clear up....you are two amazing, inspiring folks and when I look at the lengthy history of your blog.....what an incredible record of all you have gone through and with such a positive attitude!! Just wanted to say hi and send some hugs your way. Hope you can get outside and enjoy a beautiful spring day in the sun on the beach! All the beat, Susan Kraft
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