Irv Update - September 2011 #9

Irv and I got training today on manging the diabetes with insulin now that his pancreatic duct is still completely blocked. My heck but that stuff is expensive! To really piss me off, the public pharmacy at Virginia Mason DOES NOT accept our insurance for prescriptions. Can you believe it? So we had to find a Bartells drug store. Luckily, there is one quite close to Dianne's house. We pissed and moaned so much that instead of another endoscopic procedure not until Friday they agreed to do a needle biopsy of the pancreas in Interventional Radiology at 3:00 PM tomorrow. We should be able to stay at Dianne's again and then go home on Thursday! Dr. Biehl, the surgeon was the one who said to get the biospy done NOW so they worked it out. He also said that he really, really hopes he will be able to name a diagnosis after this procedure. We have our doubts. As mentioned before. Then, we come back on the 23rd for pre-op with the big surgery on Sat. the 24th. Irv will be in the hospital for about 7 days, if we are lucky. We hope they will decide which surgery they will be doing before then! There will definitely something surgical done to "fix" as best as possible Irv's "guts." Irv is feeling pretty good. Both drains have been capped now and it is hoped that the bile, after the new placement, will drain into the GI tract and not be blocked up again. We just have to flush it out 2x a day with a syringe of saline. He is still slightly yellow, but his bilirubin was down to 3.6 from a high over 8.0. (Normal is 1.1 or less!) We know a serious operation is in the future, but he is so much better than a week ago, when we thought he was probably dying that we are kind of euphoric. We will keep you informed. Penny and Irv

Irv Update - September 2011 #8

Dear F&F; Irv had a second drain placed today. It is in the proper place. The previous tube was left in, but capped off. The endoscopic ultrasound with anesthesia cannot be done until Friday. So, Irv is supposed to be discharged tomorrow after we get training on how to care for the external drain AND how to give him insulin. Seems like a lot of teaching that could have been done NOT at the last minute! The surgeon Dr. Biehl ordered a tumor marker CA 19-9. Normal is up to 39. Irv's was 1182. Whether that is due to all the crap and inflammation going on or an actual cancerous tumor has not been addressed. GRRRRRRRR. We plan to sleep in Dianne's 5th wheel starting tomorrow night. Then we have their home to relax in and Irv can flip thru all the TV channels to his hearts content! The pathology department must be pretty slow in this "world class" hospital as the biopsy result from those taken on Thursday are still not available. So we continue to wait for any definite answers about a diagnosis or what surgery they plan. Penny

Irv Update - September 2011 #7

Dear All; Irv had a CT scan this morning that showed improvement! The bile ducts are a lot less swollen/engorged. He is definitely much less yellow/jaundiced. All of his liver function lab tests are improved. Irv himself is much, much improved. He is still in the cardiac unit. Still on a lot of antibiotics as gram negative rods (think E. coli, but that probably isn't what it is) have grown in the cultures of the bile fluid taken when he "crashed" yesterday. Blood cultures are not growing anything. His heart rate is still erratic, but acceptable. Dr. Biehl, the surgeon was in to discuss the future surgery. Unfortunately, Irv is such a puzzle that an exact surgical option still isn't clear. He suggested that Irv have another endoscopic ultrasound with biopsies taken probably tomorrow or Tuesday. (He is already going to have the drainage procedure repeated tomorrow to try and place the tube in a better position.) Even now, the team of doctors here at Virginia Mason think there is a cancer present somewhere in the mess! If a cancer is found, a Whipple procedure would be done. Look it up. It is a huge surgery and a major assault on the body. Dr. Biehl was concerned that if that has to be done due to the high dose prednisone and the azothiaprine Irv has been taking that it will be a very difficult and long recovery/healing process. OR, they could just do a fairly simple clearing of the bile and pancreatic ductal area with a "clipping" procedure that allows the bile, etc. to drain right into the stomach. We have been hearing this cancer information for over a year yet NOT ONE biopsy has ever shown any cancerous cells. Dr. Kowalski,in January, when he did the small bowel obstruction surgery biopsied everything and anything and no cancer was found. The only thing I can think is that perhaps Irv does have some buildup of fluid in his abdomen they haven't told us about and I didn't think to ask directly if it was there. That could signify a cancer. Also, he has not responded at all to the "standard" drug regimen for an autoimmune disease; his condition has just progressively gotten worse to the acute liver failure he now has. Does that mean cancer? We have heard from just about every doctor we've seen that NO ONE can pinpoint a diagnosis for Irv. By the way, we really, really liked Dr. Biehl. Irv's sister Dianne and her housemate Sharon were present when we met him and he discussed Irv's case and he drew pictures of possibilities, etc. They liked him as well. So, we still wait. At least Irv is feeling much better with the drain in place and the bile leaving his body instead of being blocked inside and further damaging the liver, and who knows what else? We will still go home to La Pine at some point before the surgery, whatever it is, will be done. BUT, within 3-4 weeks max, some surgical option will be done. I'm obviously still very upset. Why can't this be a simple answer? Penny

Irv Update - September 2011 #6

Dear F&F; Irv had a rocky night. Today at 9:00 AM he is scheduled for a CT scan to check out his abdomen. It isn't getting any larger, but they are concerned about fluid collection, and to check the drain placement. Bile is still draining which is good. He is on a couple of antibiotics in case of infection. Heart rate was stable overnight. He finally started urinating after midnight. After 4 liters of fluid that was a good sign! Still not as much fluid as they expected so that is another reason for the CT scan. As I mentioned, NO VISITORS, except adult family members. I guess that is standard on this cardiac floor, not just for Irv. When I see any docs or hear the results of the CT I'll pass the information along. Penny

Irv Update - September 2011 #5

I knew everything was going too smoothly, so to speak. At 8:20 PM the hospitalist called to say Irv had developed heart arrhythmia's, was spiking a temperature, and had too low of a blood pressure even after 4 liters of fluids. They were concerned about infection (septicemia), internal bleeding from the drain placement today, and who knows what else? So, he was moved to another room, this one on the cardiac telemetry floor. He is now in room 776. NO VISITORS except family at this time. I raced back to the hospital. Irv looked very sick again. His pressure was stuck at about 90/70. He was in pain and because of the low pressure could only be given oral pain meds, which don't work very well for him. His breathing was also somewhat labored so the good IV drugs were NOT an option for the pain. His abdomen looked like he was retaining fluid in that area. He does have a large tummy, but to my eyes this seemed much larger. This was a concern that had been mentioned previously. Liver patients often develop such fluid outside of the vascular system. I strongly mentioned it to both the RN and the doctor and I hope they will watch that seriously overnight. Of course, the RN is run off her feet with FOUR patients, all sick like Irv! Modern medicine? Right! I couldn't call as I was too upset and would have just cried at you all over the phone. Penny

Irv Update - September 2011 #4

Irv's drain placement was partially successful. Bile is draining, but the doctors aren't pleased with the placement so on Monday they will try again. The hope is that the area will calm down and allow better access. Right now the engorgement from the blockage caused too narrow of a stricture to safely proceed to the "right" area. He is in room 1563. It is not a private room and is on the south side of the building and is HOT! We aren't happy about that at all. I think our insurance won't pay for a private room unless that is all that is available. Dr. Gluck was just in and reiterated that a future surgical remedy is the only option - after his liver has calmed down. A Dr. Biehl will be doing the surgery and his team is supposed to be in touch, but I doubt whether it will be until Monday. That is the news for now. Love to you all, Penny

Irv Update - September 2011 #3

It is easier for me to let you all know info when I get it than select the people who might actually need the information! Anyway, Irv is to be moved to room 1563. It is an addition to the hospital that is reached via a skybridge. Right now that is all I know about how to get there. He won't be in that room until after his drain placement procedure, due @ 10:00. Supposed to take less than an hour to complete, but we don't know if he will go right to his room or have to stay in a recovery room for a while first. We are on our way to a fix! Both of us are much more upbeat today. Irv even slept well for the first time in a couple of weeks, knowing that SOMETHING will finally be done to help him. Love to you all and thank you so much for your support. Penny