Irv Update - September 2011 #13

Dear F&F; At 0410 AM I got a call from Virginia Mason that Irv wasn't breathing well and they were going to intubate him and put him on a ventilator. Irv adamatly refused. By the time I got there he was doing somewhat better. He wasn't keeping properly medicated for pain as he would fall asleep and not push his button (every 8 minutes he can get a dose) until he was in too much pain to keep sleeping or the alarm would go off because his oxygen level was too low. He was so exhausted after so many days of trying to breath with only one lung plus being in the hospital where it seems sleep is so hard to get with all the interruptions that he did manage to sleep somehow and was causing himself all these problems. He is getting better today, but was only able to take about 15 steps from his room before he was too tired and breathing too hard to continue. He has formed some fluid (plural edema) in the right lung - a not very common complication of the fluid being removed from the space. Isn't he special? I was pretty demanding of the doctors today to tell me what was going on and why. The admission was made by the intervention radiologist that he did puncture the pleura with the placement of the second bile drain tube. But when he said how rigid and resistant Irv's bowel was to get the drain into it I realized that no one had told him that Irv had a bowel blockage in that area. The doctor could push contrast fluid thru the tiny opening, but left to itself the drain couldn't work because it was smashed in the blockage. He also showed me CT pics taken on the 14, the day of the pancreas biopsy, the day after he was discharged, that showed the presence of fluid in the lung space. The GI doctor said he was unaware ("we missed it") that the external drains were leaking copious amts of bile before he was discharged. That would have precipitated another tube check wherre they might have found the blocked drain. Can you say medical malpractice? Don't these specialists talk to each other? I don't know where to turn or how to fix this mess. World Class medical care? I think not. I am exhausted and tried to have a nap, but since in my panic this morning I forgot to take the computer with me to the hospital, and people kept calling me to find out what was going on I finally gave up to write this. Sorry! There are possible long term side effects of the bile invading the pleural space. We still need to have the corrective surgery for the bile duct blockage. Another drain has been placed along with the chest tube yesterday and will continue to drain to the outside until that surgery takes place. No idea when, but Irv and I refuse to have him leave the hospital until it is done. He still doesn't have a diagnosis. Every doctor admits that. Again, I don't know where to go or what to do now for my husband. I hate this feeling. Penny

Irv Update - September 2011 #12

Dear F&F; As we expected, but were still worried about, Irv doesn't have cancer of the pancreas. Whew! He will still need an open abdomen surgery to correct the bile duct blockage permanently. We go to Seattle on Thurs., have a doctor appt on Friday at 11:00 AM and then surgery sometime on Saturday. (Yes, Saturday!) The docs expect that Irv will have to stay in the hospital 5-6 days. I plan on staying with Dianne and Sharon in their palatial 5th wheel trailer. The pups will have to go to the kennel (doggie prison) again. Stella and Izzy were so excited to see us today. Since then they have been sleeping! Probably don't get much sleep with all the kennel activity. They woke up at dinner time to remind us to feed them, but otherwise they are down and out! We are very happy to be home, even for only a week. Any further news and I'll let you know, but for now, a respite for you all from the daily drama of the Huntsinger's. Penny and Irv

Irv Update - September 2011 #11

Dear F&F; We had a tough drive home. Every semi-truck and slow driver in the entire northwest were on the roads we were on. There was an accident that closed Hiway 97 from Toppenish to Goldendale so we had to go to Mabton and then take a narrow, twisty, two lane road to Bickelton and then on to Goldendale. Put us way behind and we missed being able to pick up the puppies by 25 minutes! $#@^&)*&^% I say. We will have to drive about 120 miles round trip to pick them up tomorrow. Our sore travel butts don't think that is a good idea and we are sure the pups knew we were coming and are very angry with us! People have asked how long the pathology takes. Well, pathologist are prima donna's and do not work on the weekends and apparently only up to 8 hours a day, not more. We hope for results tomorrow, probably not until Monday. GRRRR. With the way insurance companies, etc. push people out of the hospital you would think that the path docs would have to change their ways in order to get people the care and treatment they need in a timely manner. I'm cleaning up the house, dealing with all the paperwork for tax purposes and our own medical record keeping and doing laundry. We only expected to be gone 4 days, not 10! I did one batch of laundry at the motel, but........ Irv hopes to sleep the entire night for the first time in 10 nights! We are finally tapering his prednisone dose so his glucoses are very erratic from that, as well as the blocked pancreatic duct. He is testing 4 times a day and we have only been able to skip one short-acting insulin dose since we were trained on Tues. That means 4 insulin shots each day! Puts a whole new face on what diabetes means to a person. When I know anything, you will know it. We probably will be returning to Seattle next Thurs. Sept 22, but await the path reports to be sure. Love you all; Penny

Irv Update - September 2011 #10

All went well. We await the results. If pos for cancer, Irv will have to have chemotherapy BEFORE surgery. We believe it won't be cancer. If that is so, we will come back in a week, Sept. 22 for appts on 23, and surgery on Sat. 24. Probably stay with Irv's Mom, not sure yet. Then we can bring the dogs with us. It is very expensive to kennel them, plus we do miss them! Back to La Pine today for some "home respite" before the saga continues. Thanks to you all for your wonderful support and love. Penny and Irv

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