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