Autoimmune hemolytic anemia and other fun stuff

Today’s good information: I arrived to meet up with everyone (Tom, Kim & Lee) after 10am at the hospital. They were already in visiting and Jenny the nurse didn’t want more than 3 at a time with her, so Lee left. The lasix has certainly drained off enormous amounts of fluid from her system, probably placing her into a more normal realm. Her legs and feet were also back to normal in appearance. According to Dr Amean her heart and kidneys are functioning well. Can you tell I’m feeding you all the good information first?

Bad information: Unfortunately there is a lot to swallow. Yesterday the loaded her system with 2 units of whole blood and a “six pack” of platelets. This raised her platelet level up to 30k and in two hours it was back down to 19k. In addition to her body killing off the new platelets, it has also started destroying the red & white blood cells. The fancy name for this process is autoimmune hemolytic anemia and thrombocytopenia (for the platelet problem). Nothing like having your own immune system try to sabotage your body. She is also experiencing bleeding in her lungs. Her “sucky stick” (a suction tube she can place in her mouth) was showing the remains of what had been coughed up. To top it all off she has a gallbladder stone blocking the way which is causing a low grade infection. How much more can her little body take? Holy crap!

So she is receiving antibiotics, IVIG (intravenous immunoglobulan which helps replace her depleted antibodies), glucose, and a multitude of other drip system goodies. Her appearance is not good (sunken eyes doesn’t look good on anyone). However Dr. Amean said that “on paper, she could come through this one”. But Evelyn has not done things according to books. Her body/mind has certainly not taken the easiest route through the past many years.  The good doctor wants to wait until Monday for steroids and IVIG to take effect. If it doesn’t, then we will make her as comfortable as possible with medications until the end comes.

Tom headed back to Bend, Lee was off for his second visit and Kim was going to take a nap. I drove back to Albany to get this posting in and try and decipher all the terminology Dr Amean threw out there today.  If you have further questions on the autoimmune problem or immunoglobulan, give google a try. There is certainly loads of information out there. I just wish I wasn’t learning it under these circumstances.

8 bald eagles today on the drive down.

Sleeping afternoon

Not a lot happened after her morning visits except sleep. Lee went to visit after lunch at 1pm and waited around to see if she would wake up, but no go. Mike, Shannon & Bryant showed up around 3 and she was still sleeping. Dave & I showed up 10-15 min later, still sleeping. Kim & Tom about 10 minutes later… yep, you guessed it, still sleeping. Jenny her nurse today probably was getting pretty tired of all us calling from the waiting area outside ICU, but what ever. They were supposed to be giving her platelets into her blood this afternoon/evening to boost levels. The doctor was also talking about doing a bone marrow test (why would you do one on someone so ill, I really don’t quite understand that). Yes, we do understand that it’s the marrow that produces the blood & platelets. Her levels are still not sufficient enough for radiation treatment. Maybe tomorrow.

Looks like we will all be meeting up at 10am for another round. Hopefully I’ll get a chance to see her awake! We were all glad she was getting some much needed rest and hope it will allow her body to produce more platelets (they do only last about 10 days in the body). We did do the group dinner of Chinese food from the restaurant Alex works for. He even delivered it!

I’ll try to remember to drag the computer along to Eugene tomorrow to make posting easier. Only 2 eagles today and 17 red tail hawks.

Cannulas and whole blood

Morning results are interesting as we travel along this roller coaster ride. Evelyn has been very talkative this morning according to Kim. She, Lee & Tom are all with her right now. Her platelet count is down to 18k this morning. She did not receive the radiation yesterday because her platelet count was too low. Level needs to be at 50k before they can proceed. So they are pumping whole blood into her system and will eventually be feeding platelets directly into her spleen via a cannula (a small tube inserted directly into the body cavity to deliver/remove fluid). At least I think this is how it will go. Fortunately Tom is there, mr. blood man, who understands the terminology and working of the blood system. He probably has the best grasp on what’s really happening. The rest of us keep google search engine going with terminology.

The nurse was there administering oxycodone for her pain. She is also back on oxygen.

forgot to mention her brother Harold & his wife Lindsay stopped by to visit her this morning as well.

And yet another development…

As I published the last post, the phone rang. Kim called to let us know she and Lee were called by Evelyn. Apparently the radiation treatment didn’t happen because “she was lacking something” (this according to Evelyn). She was also reporting yogurt being fed into her veins. Hummm… she must be on some good drugs tonight. We will find out more tomorrow.

Tom will arrive around 9am on Friday. Meeting at hospital around 9:30am.

Did I mention that it feels like we’re on a roller-coaster of a ride! Holy cow!

Ace up their sleeve?

The doctors pulled out a different card today, kind of the last resort. Her spleen is apparently still enlarging and could possibly rupture. Radiation might help slow things down. Like with cancer  radiation can help shrink things to a more reasonable size. Evelyn is not a candidate for surgery, certain death on the table. If the spleen ruptures, then she will most likely die quickly. Kim and I were able to go visit briefly. She was very alert and didn’t want us there, kind of like normal.  Her focus was on the upcoming radiation treatment. Interestingly the normal face/oxygen mask wasn’t on but we don’t know why.

We did discover that the Evelyn Emergency System (EES) does work. Mike & Shannon, Dave & I and Lee all showed up at the hospital with in minutes of each other. Originally Lee called Kim, Kim freaked and called me, I called everyone else and posted on the blog, which reached those I don’t have in my cell phone. Kirsten & Jeff came to support their mother.  Harold and Lindsay showed up as we were all departing the hospital for lunch. We had such a nice time visiting with them both. Hopefully they had a nice visit with their neighbor on the 6th floor since Evelyn wasn’t available.

Lee was very concerned after his morning visit, which prompted the call to Kim.  Apparently Evelyn was very unresponsive when he arrived and looked bad. He stayed with her for quite a while and she didn’t seem to improve much. By 1pm, she looked similar to yesterday evening. What’s a family to do? Well, go eat, of course! The afternoon/day was spent as a family unit. Lunch together at Hop Valley Brewery.  Bowling was even suggested by Lee, which we all agreed to, but he was just kidding. Lee, Kim, Kirsten, Dave & I all returned to the Alder st house until evening. We figured that Evelyn would be too exhausted after her ordeal that a morning visit tomorrow would be better. Dave & I met up with Bryant, Mike & Shannon back in Corvallis for a schmackle at Big River.

Tom will possibly arrive in Eugene tonight. Fortunately he has Friday off from work. Evelyn will be quite happy to see him tomorrow.  We will be down there tomorrow waiting for more positive signs. All we can do is hope for the radiation to help.

On a total side note for the birders out there: There are huge numbers of bald eagles to be seen around sheep fields near the Coburg hills. Our count today on the drive down I-5 came to 13. We also saw 32 red tail hawks.

ICU deja vu

Being back in ICU with Evelyn is all too familiar. We are already seeing the same nurses from five months ago & the trip down the hallway isn’t as disconcerting as the initial visit. Evelyn looked much better Wednesday afternoon. The lasix (diuretic) had removed an enormous amount of excess fluid, her stomach area was not as distended, face not as puffy, breathing did not appear to be as labored and she was actually laying back almost horizontal indicating her lungs and heart were not as stressed from her internal sea of fluid.

So what testing did she encounter on Wednesday? I’m still not certain what all went on. She did have an isotope gallbladder test. Results back to the family is still pending. Why a gallbladder test? Apparently her lack of food over the past many months (after the nasal feeding tube was removed at Thanksgiving) caused that organ to shrink to almost nothing. This can certainly cause a lot of intestinal upset. Her spleen problem continues. Her platelet count increased to 30,000 and up to 60,000, then dropped back to 30,000 (due to her spleen consuming the platelets and blood cells). Mike, Kim & I have all been brushing up on our internal organ functions. Basically the spleen helps recycle old blood, platelets, and houses white blood cells. Right now it’s much larger than it should be due to all the extra blood/platelets it’s trying to destroy. Not a good thing to have happening.

If the doctors are able to remove more excess fluid, stop the spleen from destroying platelets and shrink back to normal size then they will be looking at inserting a feeding tube through her abdominal wall to the stomach. No more nasal feeding tube option. I’m pretty certain Evelyn likes that idea!

We are all stressed out from this change of events. Everyone has noted an inability to focus on tasks. Mike was very flustered on the drive down yesterday, unable to really concentrate on how to get to the hospital.  This was one of the first times we have witnessed this behavior, with exception to last September. We made an extra 20 min tour through Eugene that left Shannon, Dave & I… plus Mike too, laughing like crazy. We met Kim at the hospital parking lot so we could make a “visit in numbers”. This method is often preferred by our family because it makes it less stressful on individuals. Not certain how Evelyn likes it but we don’t care. She told Lee to tell everyone not to come visit because it’s difficult for her to talk, but we ignore that request. Others should do likewise. If you want to go see her, then do it!

Lee has taken up his “normal” routine of two visits a day to ICU. We had dinner with him after our visit. He made a big batch of potato soup, Kim picked up Metropol Bakery bread and beer from MoC (Market of Choice- the hoity toity market out on 29th & Willamette). Earlier we had stopped by Outback Steakhouse for beer and nosh to settle nerves after the mom-visit (not the best but we did discover a new brew pub down the street from them that the group might try on Friday.)

We really wish Tom was closer to share in the  family bonding time. Kim talked with him on Tuesday night and he might get Family Medical Leave time off. It’s hard for him because he has only been working the new job for 6 months (supervisor position for blood donations with the Red Cross in Bend.) It must be very difficult being on the outer fringe of it all. We are trying to keep him updated on developments.

I’ll be heading down for an early afternoon visit on my own and post more info when it comes.

“Why the Arctic Matters” Symposium at Western Oregon University

Symposium to address importance of the Arctic at Western Oregon University

Monmouth- Western Oregon University will host a community symposium addressing the topic “Why the Arctic Matters” from Jan. 28 to 30, 2010. The symposium includes experts in a variety of topics from climate change to wildlife biology to anthropology to education to an expert on Native rights. Presentations in the symposium will cover topics such as climate change, “Eskimo” culture, archaeology, and Arctic security issues. All events are free and open to the public.

Symposium schedule, presenters and bios

Thursday, Jan 28 – “Understanding the Arctic”

Columbia Room, Werner University Center

8am:  Registration

8:30 am: Welcome address by Jensen Arctic Museum Curator Roben Jack Larrison

9 am: The Arctic, the global climate

Dr. Laurence Padman, a senior scientist for Earth & Space Research, will present a talk on global climate and the Arctic. He will review what is known about the Arctic’s role in climate change and will describe how scientists study these remote and hostile, but spectacularly beautiful, polar regions.

10 am:  Caribou in the dynamic Arctic

Dr. Brad Griffith is research wildlife biologist with the U.S. Geological Survey and a Unit Scientist in the Alaska cooperative Fish and Wildlife Research Unit at the University of Alaska Fairbanks, Institute of Arctic Biology. Griffith and his students conduct large-scale and long-term studies of the interacting effects of climate change and industrial development on wildlife habitats and resulting population implications.

11 am:  William Hensley is the Inupiat author of “Fifty Miles from Tomorrow.” A native activist, Hensley served four years in the Alaska House of Representatives and six years in the Alaska State Senate. He was also president of the Alaska Federation of Natives and worked with the NANA Regional Corporation, the United Bank of Alaska, the Alaskan Department of Economic Development, and the Alyeska Pipeline Service Company.

12 pm: Lunch break

1 pm: Jensen Arctic Museum tours

2 pm: Twenty Years an Outsider/Insider in the Alaskan Arctic: observing and experiencing “Eskimo” culture, community and survival in a rapidly changing world: In April 1987, on her first trip to Alaska, Dr. Carol Jolles, associate professor of anthropology at the University of Washington, spent six weeks as guest of a tribal administrator in the Native village of Gambell on St. Lawrence Island. For the next 12 years, she moved back and forth between Gambell and Seattle, recording aspects of St. Lawrence Island Yupik culture. By 1997, she had expanded her research base to include the Native villages of Wales, on the Seward peninsula, and Inalik, on Little Diomede Island. In this presentation, Jolles describes experiences in the three communities that have impacted and shaped her personal and professional life and argues that there is much to learn from these and other northern peoples, whose homelands are challenged by global climate change. Her research explores issues of identity, ethnicity, and the transmission of subsistence knowledge and traditional histories across generations.

3 pm: Dr. Robert McGhee, is a fellow of the Royal Society of Canada, the Royal Canadian Geographical Society, and the Arctic Institute of North America, and has served as president of the Canadian Archaeological Association and as editor of the Canadian Journal of Archaeology. In 2000 he was awarded the Massey Medal by the Royal Canadian Geographical Society.

As an archaeologist, his research has focused on the archaeology and history of Arctic North America. He has undertaken fieldwork across northern Canada, from Labrador to the Mackenzie delta and northwards to the High Arctic islands, as well as in Svalbard and Siberia. His work has addressed problems such as the first peopling of the New World Arctic; the origins of Inuit culture; reactions of prehistoric populations to episodes of climactic and environmental change; and the relations between aboriginal peoples and early European visitors to Arctic Canada. He has investigated the archaeological remains left by the 16th century Northwest Passage expedition led by Sir Martin Frobisher, and crewed for a portion of the North Atlantic voyage of the reproduction Viking ship Gaia.

4 to 6 pm: Reception

7 pm:

Four Winter Nights: An Arctic Film Festival from January 26 through 29.

“Qallunaat: Why White People are Funny”

7pm in ITC 211

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Friday, January 29 – “Doing Our Part”

8 am: Registration

8:30 am: Welcome

9 to 11 am: Dr Adele Schepige, WOU professor of science education, and Dr. William Schoenfeld, WOU associate professor of physics. Schoenfeld and Schepige are the leaders of a team working on the NASA Global Climate Change Education Grant funded Global Climate Challenge Institute for K-8 Teachers (GccIFT). GccIFT is an interdisciplinary approach to learning about climate change.

11 am: What’s the Worst Thing That Could Happen?

Greg Craven grew up on a farm in Oregon, experimented with different jobs for a decade, and finally found his calling as a high school physics and chemistry teacher and currently teaches at Central High School in Independence. His main qualification for proposing a layman’s approach to climate change is having borrowed the 30 brains in his classroom to mull questions of science and critical thinking for the last 10 years. He’s found there’s no better way to refine a thought than to toss it out in front of a roomful of critical teenagers. He is a bit surprised to find he’s written a book as a result. Craven lives in Corvallis, OR, with his wife and two young daughters.

12 pm: Lunch break

1 pm: Poster session: “Our Environment”

2 pm: Arctic Security Issues: territory, resources and waterways

Mary Pettenger, Ph.D., WOU associate professor of political science Oregon State University. She received her Ph.D. in International Studies from the University of Denver. Her research interests include international politics with a focus on climate change, national security and active learning techniques.

Abstract: the presentation will cover the impact of arctic ice melt on security issues in the polar north. Topics will include territorial boundary disputes between the arctic states, disputes over access and ownership of resources to be found on or under the seabed, and the potential use of arctic waterways for transportation and trade.

3 pm: Our Environment: A panel

7 pm: Four Winter Nights: Arctic Film Festival last night

“Before Tomorrow”

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Saturday, January 30 – “Celebrating Arctic Arts”

Jensen Arctic Museum

10 am to 4 pm: Family activities including music, handicrafts and exhibits.

Event sponsors are Friends of the Jensen Arctic Museum with assistance from the Government of Canada / avec l’appui du gouvernement du Canada.

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For more information about the museum, visit: www.wou.edu/arctic