Irv Update - September 2011 #16

Dear F&F; Today we learned that after getting the vancomycin doses since yesterday afternoon (I'm not sure how many doses) Irv's kidney function level of creatinine rose dramatically. Vanco is cleared/processed by the kidney. So, now he is going to have a kidney ultrasound in 4-6 hours. He ate a small amount of food and so has to be without food or water from 4-6 hours for the test. Otherwise he slept well and is looking better every day. Too bad tomorrow he will have a major surgery. Right now it is scheduled for 10:00 AM. Beautiful day in Seattle, but very warm. The hospital doesn't have any air conditioning in this old tower so Irv has a fan blowing on him constantly. I just sit in the corner and suffer. More news as I get it. Penny

Irv Update - September 2011 #15

Dear F&F; Irv's heart settled down overnight and he is mostly in a normal sinus rhythm. He was up for short walks that he managed successfully. Unfortunately, he is growing a new bacteria called enteroccus. Is is often a hard bug to treat so he has been put on a "big gun" antibiotic called Vancomycin. He is now on two IV antibiotics. Plus, I can't remember if I mentioned it before, but he is also growing yeast. Both of these are in that pleural fluid that surrounded his right lung. His electrolytes are low, probably because there isn't any bile going thru his digestive tract - it is all draining into a bag outside of him. So he has to take these huge potassium pills that even cut in half he has a hard time getting down. Surgery is still scheduled for Saturday. Dr. Biehl was in and said that he isn't completely sure what will be done: first, Irv still doesn't have a diagnosis, and second, he has no idea what he will find after he opens up Irv's abdomen. With the complete bile duct blockage and the previous small bowel obstruction surgery, plus pancreas abnormalities, it could be a right mess! The possibility of a modified Whipple will be listed on the consent form for surgery. Scary stuff. We have had several management types visiting us and "listening to our concerns." Sure they are, they are just putting on a big show since I pissed and moaned so much. One GI person stated that Dr. Siegel DID know that Irv has a bowel blockage. I don't believe it. Dr. S. apologized to me for perforating the pleural space, yet when I told him about the bowel blockage he didn't say "Oh, yes, I knew about that." He said not one thing referencing the blockage. The words never came out of his mouth. Makes me wonder if he really did. In other words, I have yet to suspend my disbelief. I have requested that one GI doctor we had only met for about a minute after he did a procedure on Irv in the spring, NEVER talk to us again. He came in to chat yesterday. I found him to be condescending, arrogant and his opinion of the nursing staff was insulting. He's the one that told us that "most doctors do not read the RN chart notes, but expect the nurses to verbally tell the MD's if they have a specific concern about a patient." So, 95% of the care of a patient, according to Dr. Gan, isn't important for the doctors to take the time to read about. ALL the medical records here are electronic so there isn't any handwriting difficulties, etc. What a bastard!!!! Where is a phaser set to 'stun' when you need it? If this is an example of "Team Medicine" it is obvious the team of Dr. Gan doesn't include the nursing staff. On we go. This is a hard journey Irv and I are taking. In 6 months I hope to look back after gazing fondly at my healthy husband and say: NEVER AGAIN! We have suffered enough. Penny

Irv Update - September 2011 #14

Dear F&F; Well, Irv is feeling better, still having a hard time keeping his oxygen level up, but usually doing adequately. BUT, now he is having heart issues that are NOT atrial fibrillation. It is now a very erratic heart rate with pre-ventricular contractions (PVC's). Some kind of ventricle problem. OMG! The staff tried to walk with him again and all hell broke loose with his heart rate. The telemetry people called down to this floor in a panic about his readings. People came running. I just told Irv to quit causing so much trouble as we were all getting tired of it! They got him into a wheechair, more O2, deep breathing, etc. 30 minutes later calm has returned and he is in bed doing Sudoko puzzles. I have gotten a lot of response to my tirades of yesterday and have been promised "this will be taken to the next level, st least" and I may be contacted by people in various positions within the organization, etc. Blah, blah, blah. Mea culpa's all over the place. I am biding my time. As I've said, the final outcome of this and what permanent, if any, consequences Irv suffers will determine what I/Irv will do. After I left yesterday the surgical team came in. Irv told them that there wasn't any way he was going to be discharged from the hospital this time until he is "fixed" and everything that has to be done is done. Dr. Biehl, the surgeon, stated that "well if you were discharged there are several very nice hotels close by where you could stay." The rooms near here in Seattle are at least $200/night up to $500 or more. Maybe on his salary!!! WTF? Who does he think we are anyway? It is a very good thing I wasn't here or Dr. Biehl would have a whole new lower backside! I really cannot believe he said that. Irv couldn't bring himself to berate Dr. Biehl. The chicken. That is all for now. Penny

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

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

Irv Update - September 2011 #2

Dr. Gluck, the primary gastroenterologist in charge of Irv's case was just in. He said that after the drain placement tomorrow (at 10:00 AM - supposed to be at 6 PM today) Irv will be scheduled for surgery to correct the blockage with a bypass or some such thing. Obviously the drugs that should be keeping this autoimmune process in check are NOT working (CAN YOU SAY DUH? Plus every swear word you know?) The best alternative is an open abdomen major surgery to correct the problem. No more of this endoscopic crap, no more drugs (he'll have to wean off the prednisone) etc. The surgery will be within a month, possibly as early as 2 weeks from now. We are hopefully going to go home to La Pine on Monday or Tuesday with a future surgery date in hand. I am so thankful someone (Dr. Gluck) is taking charge. Since he is saying just exactly what I want to hear, and Irv wants to have done, we have faith again that a resolution to this year and a half long bucket of crap and nonsense will be fixed. Dr. Gluck isn't promising that this will be a permanent cure, but it sure as hell will be a huge improvement over what Irv has been going thru. Maybe when the get inside they will be able to effect a cure!?! That is all for now. The procedure today was canceled due to complications to the patient before Irv with a projected 2 hours to fix. Glad that wasn't Irv!! Penny

Irv Update - September 2011 #1

Dear All; On Aug 29 Irv had bloodwork done before his appt. in Seattle at Virginia Mason Medical Center. It was "normal" for him except for a really elevated glucose. By the time we got here to Seattle on September 6 he was getting very sick. On September 7 we saw the doctor and found that Irv's liver was failing due to damage from his completely blocked bile ducts. We weren't really surprised as he was becoming very jaundiced (glow in the dark yellow!) AGAIN, the definitive reason is NOT KNOWN! An ERCP was done yesterday without any success as the area was completely blocked by the bowel obstruction from January and swelling from the blockages. He was immediately admitted to the hospital. Today an MRI was done and we have finally been told (at 4:30 pm) that at 6 pm an interventional radiologist with place a temporary drainage tube by puncturing the abdomen with a big needle(?) and threading a drain thru the liver and into the blocked ducts in order to allow them to drain. If this isn't done serious and permanent damage will be done to the liver. Acute won't be applicable anymore. Yes, we are very worried. I got Irv's mother's computer so I can communicate this way and not have to call everyone. I don't remember my Facebook password so I'll have to just do email for now. (My home computer stores my passwords so I don't usually have to type them in. Lazy,I know.) When we have any additional info I'll pass it along. We are so relieved to be here at VM and not in Bend. We really wish a diagnosis could be found. It has been mentioned that the drugs (Irv is on several) may be contributing to this problem. Later, Penny