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

Aaron Cole Isaacson

Aaron Cole Isaacson was born the 24th of June, 2002, in Burns, Oregon. He is #4 in a family of 6 kids and he loves to fish, hunt, hike, camp, wrestle, ride his bike, play with family and friends, reading, drawing, and riding horses, whittling with his knife, and he is a fantastic cub scout, having just earned his Wolf award. He is a true BOY of boys.

His kindergarten teacher called him Kind Cole, and that fits him perfectly. He is a very loving boy who gives great hugs and likes to be held and talk. But Cole will stand his ground and fight. He loves the aggressive competition of wrestling and "took out" the bully at school that continued to pick on his friend Bryce; Cole is VERY loyal.

Most wouldn't know he likes to talk because he can be quite shy around some people. He has a wickedly quick sense of humor and loves to banter with Uncle Seth. He is the only 8 year old that I know that consistently puts himself to bed before 9 PM so he gets the rest he needs for school. He brushes his teeth, says his prayers, and heads to bed consistently every night without being told. He is a very dedicated student and is a pretty good piano player that practices without being told. When he makes up his mind to do something, he does it..................and he does it well. He has a great inner drive to succeed and do his best. Basically he doesn't take after his dad in the "self manager" area, exceeding my abilities in leaps and bounds, but he definitely has my love for the outdoors, and his ability to tease is on track with mine.

Friday was his 9th birthday and I took him fishing for some daddy and son time. I've included a few photos here, but for the full story and videos, you can visit my blog www.meadsflat.blogspot.com. It is one of the blogs listed on this page.

Love to all.

Cole's biggest fish of the day. A nice rainbow caught on a 6/7 weight fly rod and a brown wooly bugger his dad tied.

This is me rowing the boat!

Irv Update - April 2011 #2

Dear F&F;

Irv's liver is just fine. There was a little concern about the bile duct area, but since he is on high dose prednisone it would be masking the problems that may be there. Irv is to have liver function tests every two weeks and if they continue to fluctuate up and down with prednisone dose they want to do another ERCP(Endoscopic Retrograde Cholangiopancreatography)


It will be Irv's 3rd one in less than a year. The Virginia Mason docs will have to do some fancy talking to get Irv to have another one.

Irv is on the azothiaprine as well. It should allow the prednisone dose to decrease but we'll have to wait and see. The genetic test was fine so taking the azothiaprine shouldn't cause any problems.

We are frustrated and losing hope that anyone will be able to nail down this problem and effect a cure.

The next lab tests are to be drawn on Friday.

Penny and Irv

Irv Update - April 2011 #1

Dear F&F;

Irv and I returned home late yesterday evening after spending 3 days in Seattle at VM. Irv had a liver biopsy done on Wed. and then saw two doctors on Friday. The biopsy results weren't available on Friday. We felt the trip was about 90% needless.

None of Irv's symptoms, biopsies, blood work, CT's, MRI's or ultrasounds point to one specific diagnosis. Dr. Gluck has presented Irv's case to several groups of doctors and will again after the liver biopsy is done.

Right now, the best guess is that Irv has "autoimmune cholangitis" which is inflammation of the liver and bile duct AND a retroperitoneal process that caused the small bowel blockage. The two are immune processes and can be related to each other. He may have "NASH" which is nonalcoholic steatohepatitis. What that is is fatty liver with inflammation. Again, we await the liver biopsy. All of these "diseases" are very rare, occurring in only 2-4% of Americans. Isn't Irv lucky?

The worst problem is that all of this can lead to cirrhosis of the liver due to the constant inflammation. Every time the doctors try to decrease his prednisone dosage his liver enzymes shoot up meaning the damage is accelerating. So, he is starting the azothiaprine, which is a drug mainly used as an anti-rejection drug for organ transplants. (The genetic test still isn't back but should be shortly. The chance of it being positive is very, very rare so the doctor said go ahead and start the drug. Irv wouldn't be taking it for very long if the test does come back pos and he can stop the drug.) This drug is "steroid sparing" so most of the side effects the prednisone has would be gone. If the azothiaprine doesn't stop the liver damaging itself we weren't told what the next option would be.

Blood work done every two weeks will monitor the liver enzymes and determine how quickly Irv can decrease the prednisone use, hopefully stopping it in a few months.

It is hoped that the azothiaprine will calm down the immune system enough that in 1-2 years, Irv will be able to go off the drug and remain healthy.

Irv is feeling 80% well, but doesn't have much stamina or desire to get out and do much. He did leave today for Nehalam, OR to stay with our friend Jerry Nevin. (Jerry and Wendy had a home built there a year or so ago, Jerry just retired from Federal Way Fire, Jerry came to house and dog sit while we were in Seattle and now the "boys" are off on an adventure.) This next week is "low tide" time on the coast so they are going to dig razor clams by the zillions - I hope. We love those clam-o-lahs. (Wendy hates them so Irv and I get almost all of them! Yeah!)

Meanwhile, my annual mammogram on the remaining breast was fine. I also had a bone density test done and I have improved in all my bones scanned except the "neck of the femur." It was slightly worse and means I still have osteopenia. (The daily chemo I take decreases bone density.) My blood tests for Vitamin D, thyroid and calcium showed a pretty high calcium, which could mean hyperparathyroidism. So I had to have a PTH test, which was normal. Now, the doctors have to decide if the high calcium is something to explore. Rats! I feel just great.

That is our news. We wait for phone calls next week about the liver biopsy and Irv's blood work in 2 weeks, and then in 2 week intervals while he (we hope) steadily decreases the prednisone dosage.

Love to you all and thanks for your concern and support. It means a great deal.

Penny

Irv Update - March 2011 #4

Finally we have the dates and appts set for Irv to return to VM. We arrive on Apr. 12 for the liver biopsy on April 13 and then appts with two doctors on April 15. The past couple of weeks I guess a lot of the doctors have been gone to either vacations or conferences so we have been quite frustrated trying to get this all set up. (We are going to stay at the Inn at Virginia Mason again. It was very convenient and made the previous trip very nice.)

To top it off, the blood test to see whether Irv could take the new drug, azothiaprine, was mishandled, so it has to be repeated before he can start taking it. This is a immuno suppressant that is usually used to help transplant patients not reject their new organ, but has been found to work on autoimmune types of illnesses as well. It will eventually replace the high dose steroid he is now taking. The test is a glucose 6-pd test. Not one I have ever done myself and I don't know the sample requirements so I'm not sure who to blame for this not getting processed correctly. We are going to have it done here by Dr. Koteen instead. Irv sees him next week. Irv also sees the cardiologist about his a-fib. No new incidences of that so we are hoping Irv can discontinue the atenolol drug. It is a blood pressure drug and Irv has had some dizziness and near fainting episodes if he gets up too quickly from either sitting or lying down. Finally, he is remembering to take it slowly each and every time.

We will drive home after the late morning appt on the 15th.

Otherwise, both of us have been feeling well. Our weather has been fairly rotten. Cold, windy with a little snow almost every single day! The outlook is for this pattern to continue until the end of April. Rats. Both of us are quite ready for some warmer weather and sun.

Stella, our dog, has developed a significant limp in her left rear leg so we took her to the vet yesterday. He thought it was a torn ligament and put her on fish oil, Rimadyl and some joint compound called Phycox. After two weeks if she isn't much better he will do an x-ray series. He could feel a bit of swelling in her knee compared to the other one and she flinched when he applied any pressure to the joint. When the two dogs are taken out twice each day she runs and plays just fine, but then is quite lame afterwards. Silly puppy.

That's all our news for now.

Love to you all;

Penny and Irv

Irv Update - March 2011 #3

Dear F&F;

Our trip to VM was 80% successful. That is a good thing.

Practically the first thing out of Dr. Gluck's mouth was that Irv did NOT have autoimmune pancreatitis! He was looking at the previous MRI and other scans and comparing them to the MRI done on Tuesday morning. He then stated that he didn't know what Irv had, but it wasn't the diagnosis we had been working with for months.

Tuesday at 11:00 am we saw Dr. Gluck for the first time and he made the above pronouncement. He ordered a lot of blood tests. After reviewing the various scans, plus the MRI done there, he wanted a radiology consult, and we were to come back at 1:30 pm. Just like that he made it happen!

Wednesday morning Irv had another upper GI endoscopy. Lots of biopsies. After that procedure Dr. G. wanted Irv to see a liver specialist. No appts. until late April! Hah! Dr. G. called the department and said Irv needed to be seen and who would do it? His assistant called us that afternoon with the appt. for Friday. Team Medicine at VM really does work!

Dr. Friday morning he had another endoscopic ultrasound, this one with a Dr. Gan, but this one was very extensive compared to the one done at OHSU last May. Biopsies were taken from both sides of the still existing bowel obstruction. This hadn't been done before. Dr. Gan also did the first needle biopsies of the pancreas we know about. Friday afternoon he saw a GI/Heptologist (liver specialist). Dr. Siddique wants Irv to have a liver biopsy. She mentioned that all the doctors had been discussing Irv's case all week as it is VERY interesting as well as very puzzling. (When the movie comes out about this new "Huntsinger syndrome" Irv wants Tom Selleck to play him. No mention who is to play the loving wife!) She is also starting Irv on another medicine that will eventually replace the high dose prednisone. That will be co-ordinated with Dr. Koteen here in Bend, who will oversee the long time it takes to decrease the prednisone to nothing.

The liver biopsy couldn't be done until Monday. We didn't want to wait the whole weekend, especially since very little of the pathology had been completed, some of the more esoteric blood tests weren't back, plus Dr. Siddique ordered more blood work just that afternoon. She said it wasn't urgent, but did need to be done (because of many reasons too numerous to mention, plus I don't remember them all) to help them get to a diagnosis and treatment regimen for Irv. All the biopsies and slides from the pathology people here in Bend had just arrived at VM on Thursday afternoon. Special tests and stains that VM does still need to be done on those specimens. Because there were still so many parts of the diagnostic puzzle still missing we are sure they will decide on even more testing. Dr. Gluck had mentioned more than once that he may want to do another ERCP.

So, we came home and will go back in early April. After our experience at Virginia Mason we feel they WILL come up with a plan for Irv to remain healthy. It is such a relief to know that sooner or later we won't have to be worried about another serious medical event causing such worry and trauma to the Irv Huntsinger family.

Our dogs survived their stay in a new (to them) kennel and we will definitely go back there if we need the service again. They acted a little strangely after we left them with the lady here in Bend last Nov./Dec. but nothing like that this time.

We still wait but with much more hope! After we hear more you will also hear.

Love to you all;

Penny and Irv

Irv Update - March 2011 #2

Dr. Gluck's nurse called today and they are scheduling to see Irv next week. We hadn't heard anything earlier than April! We haven't gotten the stuff from St. Charles since they are stupid but VM feels they don't need it along with everything else they have.

So, we are getting geared up. The dogs are going to be boarded at a large facility between Bend and Redmond that appears to be really nice. It is a few dollars more than the lady who watched the dogs in October, but we think the "girls" will like being around a lot of dogs with a huge play area and their own kennel. The Inn at Virginia Mason has a medical rate for a single room at only $99/day. Since it is essentially in downtown Seattle it is quite a deal. Plus we will be right there for all of Irv's appts and have a nice place to go during waiting periods instead of a waiting room with years old magazines, crappy chairs and sick people around you.

We are excited and hopeful.

Penny

Irv Update - March 2011 #1

Dear F&F;

We have been doing really well lately. Such a relief. Irv had checkups with his gastro and cardio docs last week. His liver function tests were elevated, again, but the doc figured it was due to no prednisone during Irv's bowel blockage time so he increased the dosage back up to 40mg/day. Cardio guy said to continue the aspirin and Atenolol until the end of March and then if no more episodes of a-fib he can probably stop them. Irv is finally eating normally again so that is helping his heart.

We are still waiting for the medical records from the hospital, St. Charles, for which we have to pay about $60-100! Bastards. Then we will have them all and can send them up to Dr. Gluck in Seattle at Virginia Mason. His assistant will review them and weed out all the duplicates and arranged them for Dr. Gluck. He will review them and decide what tests, procedures or other docs he wants Irv to see/have while there and the assistant will get all the appts. close together. Then we will be informed as to when we should arrive. Probably near the end of April. Irv's gastro doc last week said that VM has seen about 100 cases of autoimmune pancreatitis. Dr. Koteen was encourage they will be able to sort out a good regimen for Irv to follow so his liver function tests will get back to normal, perhaps will a different class of drug other than steriods. He named them but it was unfamiliar and I don't remember it.

Winter weather has returned to Central Oregon. We had one night of -21º, but mostly in the 'teens at night and 25-40º days. Lots of big wind today, which is unusual for us. Little snow, but it is forecast for the entire week ahead. We had a nice day yesterday and took a longer snowshoe trip with the dogs than we normally do. (Usually no more than a mile.) Yesterday morning we had a small herd of elk in the backyard. We've seen signs all winter but it was the first time we actually saw them.

That's it.

Penny

Irv Update - February 2011 #4

Dear F&F;

The referral process has started! It looks like sometime in early April Irv will be seeing Dr. Michael Gluck at the downtown Seattle Campus of VM.

The process is this:

All medical records faxed to Dr. Gluck
He checks them out and decides what testing, etc he wants done when Irv arrives
His assistant calls with the appointment schedule
We go to Seattle and get it done!

Right now Irv is feeling really well. He is almost back to being himself. Let us hope this euphoria isn't dashed with a reality check of some sort.

We've finally had new snow, but only about 5-6" and it is really heavy and wet. Just like cement.

Mt. Bachelor has given us a voucher for 2 season passes for next year. We bought season passes in Sept. but didn't get the chance to use them before Irv got so sick. Thankfully, Mt. Bachelor was good enough to allow us to use them next year instead. That is $1100 saved. Kuddos to them.

I am grateful to be finally on the road to another opinion for Irv. Even if Dr. Gluck just corroborates what we have already been told will be welcome. At least we know that Irv is receiving the correct treatments for his aliments.

Thanks to all of your for your tremendous support. Let's all hope for an uneventful period until Irv is seen in Seattle.

Penny

Irv Update - February 2011 #3

Dear F&F;

Irv was discharged late this afternoon. As per usual, NOT ONE doctor had a clue why Irv just had this dramatic episode of sickness. Dr. Kowalski said that Irv needs to be seen by the NW expert GI docs at Virginia Mason in Seattle ASAP. Plus, now, the cardiac docs, too. We will get in touch with the Bend GI doc Dr. Koteen to start the ball rolling. He has already been in touch with the VM docs so we hope this will happen quickly. Before yesterday we were going to wait until after Feb. 23, when Irv has his regular appt. with Dr. Koteen. That time frame would have allowed most of the healing to take place after the surgery. BUT, with this latest nonsense it is felt the entire power of The Mason Clinic and its many, many tertiary care doctors need to figure out what is wrong with Irv. Since we do not know how long it will take to get the referral appts. made it is a good idea to start NOW. We agree.

A CT scan was not done, just an X-ray series of the abdomen. An "air bubble" was found in the stomach, but no other abnormalities. Today, Irv was able to eat clear liquids, then some mac and cheese and a smoothie without trouble so he got to come home. A hypertension drug called Atenolol was added to his medicines to help with the a-fib. The initial dose of the drug has lowered his already low blood pressure to about 90/60, so the dose was halved. Irv has to be very careful when he stands up to be sure he doesn't get too lightheaded. He also is to take an enteric coated 325 mg aspirin every day. Irv's white count went down to 18,000, which is still high, but lower than before. Since Irv didn't show any signs of infection it was decided it was okay to send him home.

At least now if Irv has another a-fib attack, and he knows about it, he can call Dr. Noble, his new cardiologist to see what we should do. Irv does see him on Feb. 25 unless we are in Seattle.

That's the news.

Penny

Irv Update - February 2011 #2

Dear F&F;

Irv and I went to the cardiologists this morning for Irv's 9:30 am appt. Irv was still in a-fib. It was decided that Irv would come back tomorrow and have a cardio-version done under some sort of anesthesia. While we were waiting for all that to be scheduled, Irv developed impressive chest pain and vomiting. The doctor was in the room for all this so he saw first hand just what was happening. After about 7 tries an IV was started and fluids given plus an anti-nausea drug. (Irv had tried to take a heart drug but vomited it back up in about 30 seconds.) Dr. Noble, the cardiologist, had the lab people come and draw a bunch of blood and, of course, an EKG was done. EKG showed the a-fib, the heart lab tests were normal, BUT he had quite an elevated white count of 20,000 and his liver tests were up as well.

Dr. Noble got Dr. Koteen (gastroenterologist) and Dr. Kowalski (surgeon) on board. Between them they decided to direct admit Irv into the hospital to see if he has developed a severe infection from his surgery, has another abdominal problem, or what? The a-fib is now secondary. A CT scan of the abdomen is scheduled for this afternoon, but there was a mix-up about which hospital based doctor was going to see Irv so it hadn't been officially scheduled by the time I left at 3:30 pm. ^%$#*)

By the time I left Irv was being monitored via telemetry (the cardiac unit was full so he is on a general medical floor) and waiting for the CT. He was feeling pretty good. We had brought the dogs into town with us as we were going to go to our favorite breakfast place and split a breakfast. (Irv still isn't eating very much food.) Then we were going to take the pups to one of several dog off-leash parks in Bend and come on home. Obviously, that didn't happen. I took the dogs out twice during all this chaos but leaving them in the car much longer wasn't an option so I had to come home with them.

I was getting a little calmer until the hospitalist finally came. She asked questions, got a history, did a physical exam and then proceeded to ask about advance directive stuff such as if Irv did go into cardiac arrest how aggressive did he want the medical staff to be. (We both feel strongly that when your body is ready to die, let it! Both of us have seen way too many people rotting away in the hospital on every imaginable device to keep the body working, but that person is not necessarily alive.) Anyway, then I could only imagine that they were thinking he was on death's doorstep. Not a very nice place, let me tell you.

I'm waiting for Irv or the doctor to call with the CT results. I'll relay them when I have them. I will be back very early in the morning to catch all the doctors on their morning rounds and will hopefully see what the plan is for that day. It is conceivable that Irv could still have the cardio-version and come home tomorrow. Not likely, but possible!

Penny

Irv Update - February 2011 #1

Dear F&F;

Today Irv and I spent most of the day in the ER after he noticed a heaviness and discomfort in his chest. I was able to easily feel that his heart rate was very irregular so off we went to the ER.

He was found to be in atrial fibrillation and they gave him the same drug, Cardizem, he had had previously. Unfortunately, it would only help his heart for a short period of time. The ER doc consulted with the hospitalist who treated Irv while he was in the hospital for his surgery, and also a cardiologist. Finally, a different class of drug, a beta-blocker, was tried. It also didn't completely solve the irregularity but did slow down the heart rate to an acceptable rate. After about 4 hours of monitoring it was decided that Irv could come home but he has to see a cardiologist tomorrow morning at 9:30.

So, we assume he now has a cardiac problem! Crap!

I'm not happy that he is home and will probably not sleep all night worrying that he is going to die on me. Will this nightmare ever end?

Let's hope the cardiologist will be able to easily solve this problem tomorrow and get Irv on a drug that will help his heart. As to why it is happening, let's hope that will come to light as well.

Meanwhile, we had a gorgeous day in Central Oregon.

Penny

Irv Update - January 2011 #11

Dear F&F;

When I went in to see Irv this morning he informed me that he got to come home today. He had eaten eggs, pancakes and juice for breakfast without any trouble so he was cleared to leave the hospital. Hooray!

He is allowed to eat anything he wants, just small amounts at a time and chew thoroughly! Several small meals a day and no huge amounts of anything. Plus lots of fluids.

The dogs were overjoyed to see him in his recliner again. I like the look of him there as well.

Irv will see the surgeon Dr. Kowalski next Friday, one of his Physician Assistants on Monday for the removal of the staples in his incision and then the gastroenterologist the following week. Irv is back on the prednisone (30 mg/day) and the generic Prilosec. He was given some pain pills, but really isn't needing them very often. Just if he has a big coughing bout, which seem to come on every so often for no apparent reason.

Just being home and being allowed to rest/sleep whenever he wants is a joy. He had nurses and other caregivers in and out of his room all hours of the day and night. Checking vitals, checking his glucose, measuring his oxygen level, weighing him. Since the TPN (which was 15% glucose) was removed, his glucose levels have all been normal. That is a big relief and just what we hoped would happen. Irv is to keep checking his glucose 2x day and see his family practice doctor if it is greater than 125 fasting, or 160-200 just before the evening meal. Before the surgery it was always much lower than those numbers, but he wasn't eating anything either. At least nothing that stayed in him that is.

Now we just wait for him to heal completely. The projected recovery time is 8 weeks from now. He just wants to be able to get in the hot tub again. That is taboo until his stomach is completely healed and the doctor says he can get in the tub. I've lowered the temp to 80º so he won't be tempted. (He doesn't know how to raise the temp, even tho it is really easy to do. Hah!)

Thanks again to you all for so much support! Let's hope this is the last of all our health problems for a really long time. Both of us are so over being sick.

Penny and Irv

Irv Update - January 2011 #10

Dear F&F;

Today I took Stella and Izzy to see Irv in the hospital! St. Charles allows approved pets to go into the rooms of patients. Stella and Izzy passed inspection so they got to see Irv today. It was very cute as Irv hadn't seen them for over a week. The dogs kept sniffing all the new stuff attached to their "daddy" until they finally just laid down on the floor. Several people passing by had to come in and pet the dogs and exclaim about how well behaved they were.

Irv had eaten a custard and a banana milkshake was delivered while I was there. Over the course of the day other "fluid" items he ordered came every few hours and he managed to eat them all - slowly- and not feel nauseated or over-full. His TPN nutrition will be gradually decreased in volume throughout the day and night until by tomorrow morning they will stop it completely. As long as he keeps eating, that is. Also, his pain medicine and antibiotic will change to pill form tomorrow. When I see him next he may be IV free! They will keep in the PICC line until discharge, just to make blood draws easier, as well as an easy access port if needed before then.

Irv even had a real shower today. It was a little challenging as the IV pole with its 3 pumps were still attached to him, but it had to stay outside of the shower curtain. No matter. It allowed him to really feel clean for the first time in over a week.

The dogs get to see Irv with me tomorrow and hopefully I'll be bringing him home on Saturday! I'm finally relaxed enough to really enjoy this progress. At least I'm no longer worried my husband is going to die on me. At least not in the foreseeable future.

Thanks again for all the loving support. It has really been necessary to keep me going, believe me. Thanks!

Penny

Irv Update - January 2011 #9

The NG tube is outta there! Hooray! Irv still has a very sore throat and he still sounds kind of funny when he talks, but that tube is gone.

He also was moved up to the 5th floor, room 522.

Not only do we have farts, but poo-poo as well! We were all so proud! The nurses even have to view it and try to figure out volume, etc. Isn't that a nice part of a job description?

His heart is still being monitored, but by some device that sends a signal back down to the 2nd floor only if there is an arrhythmia. Or something like that. But, he hasn't had anything like that for over 24 hours so no one is worried.

He was allowed jello and a Popsicle today. He said they were delicious! The cold popsicle especially for his sore throat.

After so much of nothing it is dizzying to have so much progress in such a short time. He does have to manage some Ensure or such type of food tomorrow. If that goes well he could be home by the weekend! He is still getting the TPN via the PICC line because he is still nutritionally deficient.

I'll keep you all informed. It is so nice to see my Irv looking more like himself instead of a barely walking shadow of his former self.

Penny

Irv Update - January 2011 #8

Dear F&F;

My internet has been up and down for a couple of days, mostly down. Repair people coming this morning.

Anyway, at 10:17 pm on Monday night Irv produced a fart! Hoorrayyy!

Yesterday they plugged his NG tube and even put some 50 cc's of fluid thru it into his stomach in the afternoon and he was fine. If the same continued during the night they will pull that damn NG today.

Plus, they stopped the Cardizem, too. As long as Irv doesn't have any a-fib events by this morning he can go off the full-time heart monitoring and they will move him to the regular surgical floor.

LOTS of progress!

I await the Internet repair people and then will go to Bend to see Irv and find out the latest news.

Yesterday, Dr. Koteen, the gastroenterologist taking care of Irv the last several months, came to see him. Dr. Koteen has already started the ball rolling to get Irv to Virginia Mason as soon as he can travel up there. This Dr. K. also contacted OHSU in Portland and even the Mayo Clinic docs, who pioneered the autoimmune pancreatitis treatments. After he pulls all the information together he will be advising us as to what we should do to find a real diagnosis for Irv and hopefully find a way to treat it effectively and get Irv healthy again. I hope it doesn't require us going to the Mayo Clinic, but we will if we have to to get this fixed!

I'll send this now as the Internet is still up. More later.

Penny

Irv Update - January 2011 #7

Dear F&F;

Not the progress we are waiting for, as in farts, passing gas etc. BUT at least Irv is looking more like himself. Finally, today, he had a really good "bath" and was able to shave himself. He in so encumbered with paraphernalia that he can't go anywhere except to a chair from the bed, but he did it today. Yaaah! Since walking would help his digestive system "wake up" the nurse was going to help the nurse assistant follow Irv around his room a little, dragging/pushing all the stuff, to see if his tummy would start functioning again. (He has 2 IV poles running 4-5 different things and a heart telemetry monitor thing. Plus the suction apparatus for the NG tube in his nose and a blood pressure cuff on all the time, plus those squeeze things on both legs. Those last three could be left off for a while.)

Irv was much more "himself" by joking and taunting all of us as well. Roger and Marilyn, Irv's brother and sister-in-law, arrived yesterday afternoon for a surprise visit from Newberg, OR. I had already gone home for the day, but they visited with Irv, stayed in a motel for the night, and then came back this morning. It was so wonderful to have someone give me big hugs! Irv seemed to appreciate the visit almost as much as I did. Irv's biggest complaint is that the TV in the room is only a 19" one, and up on the wall! How was he to see the football games on that? (See, he really must be getting well.)

I was finally able to catch all the doctors who checked up on Irv today. Before, no matter how early I got to his room they had already been in! So today I managed to get there by 6:45 am, and of course, it being Sunday, they didn't start showing up until almost 10:00. No one is concerned that the bowel hasn't started functioning again, today would have been the earliest anyway. The complete pathology wasn't available yet, but again, no one expect there to be any cancer. I am hoping that a more definitive diagnosis can be made from the pancreatic biopsies. Autoimmune pancreatitis has a specific look and Irv had sort of that look last May when the last biopsy was done, but not definite.

I'll be in his room again very early tomorrow in order to catch the doctors, I hope.

For those of you who asked, we live 42 miles from the Bend hospital, St. Charles Medical Center. No flowers are allowed in the IMCU. There isn't a phone in his room so no one can call him. The nurses have been WONDERFUL. I have heard this about the staff for years, and it is true.

I'll keep you updated as thing progress. Gross as it may be, we are praying for farts, or whatever name your family has for them. You do the same!!

Penny

Irv Update - January 2011 #6

Today when I got to the hospital, about 8:00 am, Irv was sleeping! He said he had actually had a pretty good night. A new IV assembly was present - it was the pain medicine that he can give himself, up to a predetermined amount, of course. There were some vinyl apparatus' on his legs that squeeze on and off to keep the blood moving. He had nasal cannula delivering 2L. of oxygen, too. Every hour some machine takes his blood pressure and he is supposed to exercise his lungs with some respirator device when that happens. An antibiotic was flowing in with the regular IV.

Because he can't take any medicine by mouth and he will stay on the Cardizem (thanks for the spelling Pat and Kerrin, you dogs) by IV to help keep his heart in a normal rhythm. That also means he will stay in the IMCU until he can take the medicine by mouth because his heart has to be continuously monitored while on this IV drug and the regular floor doesn't do that. He is also getting a form of anti-clotting medicine via a shot in his abdomen to help keep any stray clots from forming in his body since he isn't moving around much.

The nurses tried to get him up into a chair, but he was too dizzy and weak so he has just been sitting on the side of the bed and dangling his legs.

IV Therapy inserted the PICC line and about 3:30 he got his first TPN feeding into his blood system. With this PICC he also can have all the blood draws plus most of the IV's done thru it. The Cardizem needs to be given in normal saline, so it still has its own IV, but at least instead of three Irv still has just two IV's.

One quandary is that Irv's glucose levels are now too high, running around 160-180, with the D5W IV. He was given a couple units of insulin and will be put back on Lactated Ringers solution with the next IV change.

About 2 liters or more of bile and other fluid is still being removed with the NG tube from his stomach each day. So far, no promising bowel sounds. That isn't unexpected.

At least I felt good after seeing him today. He is obviously ill, but seemed to be more hopeful and positive than he has been in a long time. His voice wasn't so dead and lifeless in tone. Does that make sense?

Let all hope and pray this is the start of a miraculous recovery!

Thanks to you all for your notes and encouragement. It does help. I'm also thinking there is a future again. Whew!

Penny

Irv Update - January 2011 #5

Dear F&F;

Sometime last night Irv's heart reverted to a normal sinus rhythm. He couldn't tell it was in a-fib, and he couldn't tell when it came out. I guess a lot of people can tell when their heart is screwing up, but not Irv! He is still on the Cardazyme (sp?) thru an IV line. I don't know how long they will keep him on that. I was wrong about him getting glucose in his IV. He was just getting the boluses. Still his glucose levels were too low, around 60-70 so he is now on glucose IV's.

After an endocardiogram Irv's heart was okay and no clots had formed from the a-fib, so he finally had the surgery about 4:00 pm today. NO cancer was found anywhere!! Yahoo.

His pancreas had a hard/woody feel to a large portion of it. Probably due to the autoimmune process, but not cancer. Dr. K. was so sure there would be some cancer somewhere, so now he, along with everyone else, have no idea why Irv is having so much trouble. It must be autoimmune, but right now no one can say why. I hope and assume that we will finally be referred to OHSU in Portland for some sort of work-up by specialists that aren't available here in Bend, but that is a guess on my part. He will certainly have to be healed from this surgery before that will happen.

From the exterior of the bowel, there was no indication there was a obstruction! Dr. Kowalski could feel and manipulate it, but otherwise it would have been hard to detect if the endoscopy on Jan. 7 hadn't confirmed it was there.

The by-pass was completed successfully. Irv is now seriously nutrition depleted so tomorrow a PICC line will be placed for IV nutrition called TPN. Trans parenteral nutrition, I think is what that means. A dietitian came in today and explained the process. There are about 4-5 steps Irv has to complete before he will be allowed "real" food again. TPN is #1, then when they are sure the stomach and bowels are working clear liquids is #2, then #3 is liquids like Ensure, #4 is bland mushy food, etc.

He will not be allowed to eat anything by mouth for 2-3 days (at least) so it was felt he needed this other type of nutrition now to not only help him get better but to help him heal faster.

It is expected that he will stay in the hospital for 5-7 days. He will remain in the Intermediate Cardiac Unit for at least another day, then probably be moved to a regular room without the continuous heart monitoring. He has to be at least to #3 above, if not #4, and passing stool, before he can come home.

I'm so exhausted that I may sleep for 12 hours tonight! I hope Irv will be able to rest as well. He still has the damn NG tube in his nose and into the stomach, plus a urine catheter as well. Neither of those is making him happy. Too Bad - I say. Deal with it! At least now we have hope he will start getting well! I imagine tomorrow the PICC line will be another annoyance.

Any interesting news and I will pass it along.

Penny

Irv Update - January 2011 #4

Yesterday when Irv and I went to the hospital to check in for the surgery it was found that not only was his glucose level quite low at 65, but his heart was in atrial fibrillation and his blood pressure was low and irregular. He was taken to the Intermediate Cardiac Unit and started on IV's with glucose boluses, and he was placed on a continuous heart monitoring system. Some medicine to hopefully get his heart to start beating regularly was added with another IV (so now he had two going) as well as an initial bolus. (My sister Kerrin was called immediately and she assured me it was the correct medicine, but I don't remember the name right now.)

Obviously, surgery was canceled and today Irv will have at least an echocardiogram to check out his valves, etc. A series of heart enzyme and heart functioning tests were done and by the time I left about 8:30 pm they were all negative. I'm pretty sure that means his heart is just beating irregularly and not that he has had some sort of heart damage due to that.

A nasogastric (NG) tube was placed thru his nose into his stomach to get rid of all the build-up of fluids. No only to make him feel better (except for the NG tube, which is a pain) but to see if that was one thing contributing to the heart problem.

Meanwhile, the nurses kept checking his glucose levels, which refused to stay up. One IV was giving him glucose, but they couldn't run it very fast in case it overloaded his hearts pumping ability. So, he kept getting boluses of a high glucose solution.

Irv was dehydrated - another reason perhaps for the heart a-fib?

He has lost about 40 lbs in less than 6 weeks.

I'm on my way to the hospital now. Lots of conferencing will be done by all the medical team to decide when to get the surgery done. It HAS to be done so everyone just has to agree on when it would be safe.

Trav and Casey are leaving today.

I'll keep you updated when I get any news and can get to a computer to send the info.

Penny

Irv Update - January 2011 #3

Dear Family and Friends (F&F);

Dr. Kowalski called today. He has talked to Dr. Koteen and they have agreed there is little or nothing medically that can be done for Irv. But, Dr. Kowalski is going to consult with other gastroenterologists in the Bend Memorial Clinic where he has his office. Just in case there is an option no one has thought of yet.

If nothing comes up, Irv will have surgery on Wed. Jan 19. Somehow they will bypass the obstruction with another section of bowel. I'm not exactly sure what happens to the existing area except that it isn't involved in the digestive system anymore. Nor do I know what happens to those ducts that empty into the bowel in this area. I have a lot of trust in Dr. Kowalski and know that he DOES know! I wish we didn't have to wait until then. If there is a good reason I don't know what it is.

Meanwhile, Irv is on Ensure, Carnation Instant Breakfast, chicken broth, PowerAde, Jello, and Jello puddings, but NO chocolate flavors. Obviously he can drink milk.

So far he isn't throwing up much at all, but still feels quite full of fluid all the time, but something must be working its way thru the obstruction. His blood work showed an elevated white count and so far his nutrition status is low, but acceptable. A few parameters were elevated on his liver function tests, but nothing to worry about right now. That is a relief.

Travis and Casey will be here next week until Thursday Jan. 20 and I am so relieved. Having my sons here when Irv has surgery will help my stress level quite a bit.

That's all for now.

Penny

Irv Update - January 2011 #2

Finally, we have a diagnosis. After much foolishness by the medical profession (or rat bastards, I would rather say), the endoscopic exam today showed a small bowel obstruction. Not "blockage" but "significant obstruction." Dr. Koteen had the gall to say it wasn't seen on the CT scan of Dec. 27, done when Irv was in the ER. Hah! I say. Irv's symptoms have not changed since before that time,only worsened, so it was there, some idiot radiologist (rat bastard) just didn't see it. I want it known that I did suggest that Irv had a small bowel obstruction to the ER doctor - who totally ignored me, of course, because he is a rat bastard.

It is right after the pyloric opening of the stomach at the beginning of the small intestine. It is 3-4 cm in length.

It will require surgical correction, but we are awaiting the numerous biopsies taken by the doctor (rb). If they show cancer, then that will determine how extensive of a surgery Irv will have. If it isn't cancerous, a less invasive option will be done.

I would have preferred that it be done this afternoon! Meanwhile, Irv is on a liquid only diet. Dr. Koteen (rb) did try to expand the obstruction opening (he was able to get the endoscope thru the obstruction - barely) by using a balloon, but it did revert to almost the same small opening size as before. About a quart or more of fluid was extracted from Irv's stomach. (Just yesterday, Dr. Koteen (rb) said Irv didn't have a build-up of fluid - HAH!)

There was a lot of "sludge" left that was too thick to aspirate and it is hoped that it will make its way thru the slightly larger opening in the obstruction.

Irv felt so much better having that very large amount of fluid removed from his tummy!!!

Since it is Friday, I can only hope that some how, some way, the pathologist(s) (rb's all of them who only work M-F) will read the biopsies soon. Dr. Koteen was hopeful that he would have information by tomorrow - Saturday. I have my doubts and can only hope that Irv will be able to feel okay until we know something. It amazes me that so much of medicine is DO IT NOW! or I want it yesterday, yet this can wait until Monday. WTF!!

I will keep you informed as I hope to have a resolution to the questions very soon!!

Penny

Irv Update - January 2011 #1

Well, we spent yesterday at St. Charles on the 5th floor in the infusion room. Irv had 2 liters of fluid IV'd into him again. Another change of medications. But, he didn't ever see the doctor or even talk to him. Everything was done through his nurse/receptionist. Another bunch of blood testing was done. One new thing is they are testing for H. Pylori, a bacteria that causes a lot of the symptoms Irv is having.

Now the thinking is that maybe he has something called "diabetic gastric paresis" which means the outlet of his stomach to the intestines isn't working correctly. It would be another rare diagnosis as he hasn't really been a diabetic and usually it takes a long time of high blood sugars to impair the function of the vagus nerve to the point it causes this problem. But, Irv got some medicine called Reglan for that condition. A newer, very expensive (>$500 for a prescription) drug called Dexilant was also prescribed. Luckily, we got 75 days worth of doctor samples to see if it actually helps the excess acid production from his stomach and allow the stomach to heal.

On Friday, Irv may have another endoscopy of the stomach and a little farther along the GI tract. A biopsy would be taken for that Helicobacter Pylori, which is the "gold standard" for diagnosis. Plus, the doctor could see what everything looks like since the CT scan done on Dec. 27 in the ER didn't show anything unusual. We are hoping someone will call and tell us for sure! Dr. Koteen, the bastard, is in surgery all day today (as well as yesterday) and so we are unsure just how much on his feeble mind Irv is present!

Initially, the doctor's office was telling Irv that MAYBE he could be seen on Wed. or Thursday of this week. At that point I became an enraged person and called back and told the nurse/receptionist that was TOTALLY UNACCEPTABLE. WTF! If we don't hear anything by noon look for nuclear bomb signs in Central Oregon. That will be me.

Love to you all, and I'll keep you informed.

Penny