I want to encourage people to carpool to Claremont. Let me know if you need a ride or can drive. I will see if I can get you in touch with others wanting to do the same.
Kris
Saturday, April 30, 2011
Thursday, April 28, 2011
Photos of Bill
I would like to put together a slide show of pictures of Bill. Could you scan and send me picture (wprinz@berkeley.edu).
The more the better. If you know the approximate date when the picture was taken, that would be good too
The more the better. If you know the approximate date when the picture was taken, that would be good too
Details of Memorial Service
Friends,
So Bill's memorial service will be hosted by Pomona College. Here are details:
Date: May 7th, 2011
Time: 3pm
Place: Bridges Hall of Music (Little Bridges)
150 East Fourth Street
Claremont
Reception: Immediately after memorial service in Carolyn Lyon Garden, on the west side
of Little Bridges.
Parking: Throughout the campus and along College Avenue.
Hope you can make it. If not, we know you will be present in spirit.
Kris
So Bill's memorial service will be hosted by Pomona College. Here are details:
Date: May 7th, 2011
Time: 3pm
Place: Bridges Hall of Music (Little Bridges)
150 East Fourth Street
Claremont
Reception: Immediately after memorial service in Carolyn Lyon Garden, on the west side
of Little Bridges.
Parking: Throughout the campus and along College Avenue.
Hope you can make it. If not, we know you will be present in spirit.
Kris
I'm saddened to have to say goodbye so soon.
It was an honor and a privilege to have had Bill as a mentor, a guiding light, an "academic father," and more importantly, a friend.
As you know, Bill always had a passion for the arts and sciences. Among many things, he was very involved in the installation of the Turrell's SkySpace at Pomona - an artistic structure crafted based on the science of light. The brightest star shining through the SkySpace will now and always remind me of Bill.
Eve
It was an honor and a privilege to have had Bill as a mentor, a guiding light, an "academic father," and more importantly, a friend.
As you know, Bill always had a passion for the arts and sciences. Among many things, he was very involved in the installation of the Turrell's SkySpace at Pomona - an artistic structure crafted based on the science of light. The brightest star shining through the SkySpace will now and always remind me of Bill.
Eve
Wednesday, April 27, 2011
Andrea here. I was in LA for a week to see Bill and was glad that I could spent some time with him in his last days. Even in the dreadful state, Bill was still as sweet as ever and his lust for life was strong till the last minute. In his most 'present' moments (he would dose off from time to time due to medication or exhaustion), he would even crack jokes and blow kisses. I seldom see patients in severe conditions showing such liveliness, but Bill definitely retained much of his witty, lively and crazy fun self despite the physical challenge.
Bill will always remain my inspiration of living life to the fullest. The incredible love that surrounds him, which is the best testimonial for the love and grace he has given all of us, shall resound and lead us to our reunion in another dimension.
A huge thanks to Abby and Kris, who have handled this difficult journey so well and made sure that Bill's last wishes were fulfilled. My prayers and thoughts are with you, always.
Bill will always remain my inspiration of living life to the fullest. The incredible love that surrounds him, which is the best testimonial for the love and grace he has given all of us, shall resound and lead us to our reunion in another dimension.
A huge thanks to Abby and Kris, who have handled this difficult journey so well and made sure that Bill's last wishes were fulfilled. My prayers and thoughts are with you, always.
Memorial Page -
communications@pomona.edu and they will post to the site. Here's the site address:
http://www.pomona.edu/administration/communications/special-features/william-banks/memorial.aspx
William Banks, Edwin F. and Margaret Hahn Professor of Psychology
William “Bill” Banks, a member of the Pomona College faculty for 42 years, died in Los Angeles on April 25, 2011. The cause was scleroderma.
As a professor and mentor at Pomona, Banks influenced hundreds of lives. He arrived at Pomona College in 1969, soon after earning his Ph.D. from Johns Hopkins University, and quickly became a popular professor, known for his quirky sense of humor, his colorful class demonstrations of cognitive phenomena and his dedication to his students. His courses included Perception and Cognition, the Psychology of Evil, Seminar in Consciousness and Cognition and, since 1986, Intermediate Aerobics. He also taught first-year seminars that drew so many students that it was difficult to accommodate them all.
In 1978 and again in 2002, Banks received the Pomona College Wig Distinguished Professorship award, the highest honor bestowed on faculty. On receiving the second award, Banks likened his teaching style to a form of show business, making his lectures enjoyable and hands-on to encourage his students to “think, talk and create.” He served as chair of the Psychology Department from 1977 to 1990 and again from 2001 to 2004.
In his research, Banks investigated the nature of human perception and the role of consciousness in cognition. His research publications helped launch the field of the scientific study of consciousness, which has become a burgeoning research area in cognitive science.
Among his many professional achievements, Banks is considered a founding father of the field of consciousness and cognition. He was a founding co-editor of the journal Consciousness and Cognition in 1990, serving as editor-in-chief since 2005. He was also editor-in-chief of the Elsevier Encyclopedia of Consciousness. A founding member of the Association for the Scientific Study of Consciousness in 1994, he served as the main organizer of the ASSC’s first conference, which was so successful that it is considered to have firmly launched both the organization and the field. The conference is now in its 15th year and rotates between North America, Asia and Europe.
Among his broad research interests, Banks investigated cultural variables in cognition. One study focused on the differences between Western and Confucian-influenced societies in areas such as determining blame for actions and defining personal boundaries. He was particularly interested in why people can do evil to others, examining events such as the Nazi holocaust, the massacres in Rwanda and ethnic cleansings in areas ranging from the American West to Yugoslavia.
Banks has authored more than 100 research articles and served as an editor for several professional journals. His work has been supported by the Fetzer Foundation, the Ford Foundation, the Irvine Foundation, the National Institute on Alcohol Abuse and Alcoholism, the National Institute for Mental Health, the National Science Foundation and the Sloan Foundation.
Originally from Madison, Virginia, Banks earned his B.A., cum laude, from St. John’s College in Annapolis, Maryland, and later earned both his M.A. and his Ph.D. from Johns Hopkins University.
Banks is survived by his children Abigail Banks, Joshua Banks, Sophie Banks and Olivia Banks, and his sister Betsy Ryland. As soon as information is available on a memorial, that information will be posted to the College website.
Pomona College obituary on Bill
Pomona College website is posting a memorial page for Bill Banks where people can post comments and memories. Read below for details. Also included is an obituary sent out to Pomona College community.
_______________________________________
From: Laura Tiffany [Laura.Tiffany@pomona.edu]
Sent: Wednesday, April 27, 2011 11:51 AM
To: Staff
Subject: Re: Professor William Banks
Dear Colleagues,
The Memorial page is now live. Please send your thoughts and memories to communications@pomona.edu and we will post them on the site.
http://www.pomona.edu/administration/communications/special-features/william-banks/memorial.aspx
Thank you,
Laura Tiffany
Web Editor
On 4/27/11 10:37 AM, "Cecilia Conrad" wrote:
DATE: April 27, 2011
TO: The Pomona College Community
FROM: Cecilia A. Conrad
RE: Professor William Banks
I am forwarding an obituary for our colleague and friend Bill Banks, who died Monday. The obituary will be posted on the College website, and a memorial webpage will be available later today for people to post their thoughts and memories about him.
William Banks, Edwin F. and Margaret Hahn Professor of Psychology
William “Bill” Banks, a member of the Pomona College faculty for 42 years, died in Los Angeles on April 25, 2011. The cause was scleroderma.
As a professor and mentor at Pomona, Banks influenced hundreds of lives. He arrived at Pomona College in 1969, soon after earning his Ph.D. from Johns Hopkins University, and quickly became a popular professor, known for his quirky sense of humor, his colorful class demonstrations of cognitive phenomena and his dedication to his students. His courses included Perception and Cognition, the Psychology of Evil, Seminar in Consciousness and Cognition and, since 1986, Intermediate Aerobics. He also taught first-year seminars that drew so many students that it was difficult to accommodate them all.
In 1978 and again in 2002, Banks received the Pomona College Wig Distinguished Professorship award, the highest honor bestowed on faculty. On receiving the second award, Banks likened his teaching style to a form of show business, making his lectures enjoyable and hands-on to encourage his students to “think, talk and create.” He served as chair of the Psychology Department from 1977 to 1990 and again from 2001 to 2004.
In his research, Banks investigated the nature of human perception and the role of consciousness in cognition. His research publications helped launch the field of the scientific study of consciousness, which has become a burgeoning research area in cognitive science.
Among his many professional achievements, Banks is considered a founding father of the field of consciousness and cognition. He was a founding co-editor of the journal Consciousness and Cognition in 1990, serving as editor-in-chief since 2005. He was also editor-in-chief of the Elsevier Encyclopedia of Consciousness. A founding member of the Association for the Scientific Study of Consciousness in 1994, he served as the main organizer of the ASSC’s first conference, which was so successful that it is considered to have firmly launched both the organization and the field. The conference is now in its 15th year and rotates between North America, Asia and Europe.
Among his broad research interests, Banks investigated cultural variables in cognition. One study focused on the differences between Western and Confucian-influenced societies in areas such as determining blame for actions and defining personal boundaries. He was particularly interested in why people can do evil to others, examining events such as the Nazi holocaust, the massacres in Rwanda and ethnic cleansings in areas ranging from the American West to Yugoslavia.
Banks has authored more than 100 research articles and served as an editor for several professional journals. His work has been supported by the Fetzer Foundation, the Ford Foundation, the Irvine Foundation, the National Institute on Alcohol Abuse and Alcoholism, the National Institute for Mental Health, the National Science Foundation and the Sloan Foundation.
Originally from Madison, Virginia, Banks earned his B.A., cum laude, from St. John’s College in Annapolis, Maryland, and later earned both his M.A. and his Ph.D. from Johns Hopkins University.
Banks is survived by his children Abigail Banks, Joshua Banks, Sophie Banks and Olivia Banks, and his sister Betsy Ryland. As soon as information is available on a memorial, that information will be posted to the College website.
Pomona Staff Mailing List
[cid:3386749865_769759]
Laura Tiffany
Assistant Director of Communications, Web Editor Pomona College http://www.pomona.edu
Follow us on:
http://www.twitter.com/pomonacollege
http://www.facebook.com/pomonacollege
http://www.vimeo.com/pomonacollege
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http://www.flickr.com/photos/pomona-college
Pomona Staff Mailing List
_______________________________________
From: Laura Tiffany [Laura.Tiffany@pomona.edu]
Sent: Wednesday, April 27, 2011 11:51 AM
To: Staff
Subject: Re: Professor William Banks
Dear Colleagues,
The Memorial page is now live. Please send your thoughts and memories to communications@pomona.edu and we will post them on the site.
http://www.pomona.edu/administration/communications/special-features/william-banks/memorial.aspx
Thank you,
Laura Tiffany
Web Editor
On 4/27/11 10:37 AM, "Cecilia Conrad"
DATE: April 27, 2011
TO: The Pomona College Community
FROM: Cecilia A. Conrad
RE: Professor William Banks
I am forwarding an obituary for our colleague and friend Bill Banks, who died Monday. The obituary will be posted on the College website, and a memorial webpage will be available later today for people to post their thoughts and memories about him.
William Banks, Edwin F. and Margaret Hahn Professor of Psychology
William “Bill” Banks, a member of the Pomona College faculty for 42 years, died in Los Angeles on April 25, 2011. The cause was scleroderma.
As a professor and mentor at Pomona, Banks influenced hundreds of lives. He arrived at Pomona College in 1969, soon after earning his Ph.D. from Johns Hopkins University, and quickly became a popular professor, known for his quirky sense of humor, his colorful class demonstrations of cognitive phenomena and his dedication to his students. His courses included Perception and Cognition, the Psychology of Evil, Seminar in Consciousness and Cognition and, since 1986, Intermediate Aerobics. He also taught first-year seminars that drew so many students that it was difficult to accommodate them all.
In 1978 and again in 2002, Banks received the Pomona College Wig Distinguished Professorship award, the highest honor bestowed on faculty. On receiving the second award, Banks likened his teaching style to a form of show business, making his lectures enjoyable and hands-on to encourage his students to “think, talk and create.” He served as chair of the Psychology Department from 1977 to 1990 and again from 2001 to 2004.
In his research, Banks investigated the nature of human perception and the role of consciousness in cognition. His research publications helped launch the field of the scientific study of consciousness, which has become a burgeoning research area in cognitive science.
Among his many professional achievements, Banks is considered a founding father of the field of consciousness and cognition. He was a founding co-editor of the journal Consciousness and Cognition in 1990, serving as editor-in-chief since 2005. He was also editor-in-chief of the Elsevier Encyclopedia of Consciousness. A founding member of the Association for the Scientific Study of Consciousness in 1994, he served as the main organizer of the ASSC’s first conference, which was so successful that it is considered to have firmly launched both the organization and the field. The conference is now in its 15th year and rotates between North America, Asia and Europe.
Among his broad research interests, Banks investigated cultural variables in cognition. One study focused on the differences between Western and Confucian-influenced societies in areas such as determining blame for actions and defining personal boundaries. He was particularly interested in why people can do evil to others, examining events such as the Nazi holocaust, the massacres in Rwanda and ethnic cleansings in areas ranging from the American West to Yugoslavia.
Banks has authored more than 100 research articles and served as an editor for several professional journals. His work has been supported by the Fetzer Foundation, the Ford Foundation, the Irvine Foundation, the National Institute on Alcohol Abuse and Alcoholism, the National Institute for Mental Health, the National Science Foundation and the Sloan Foundation.
Originally from Madison, Virginia, Banks earned his B.A., cum laude, from St. John’s College in Annapolis, Maryland, and later earned both his M.A. and his Ph.D. from Johns Hopkins University.
Banks is survived by his children Abigail Banks, Joshua Banks, Sophie Banks and Olivia Banks, and his sister Betsy Ryland. As soon as information is available on a memorial, that information will be posted to the College website.
Pomona Staff Mailing List
[cid:3386749865_769759]
Laura Tiffany
Assistant Director of Communications, Web Editor Pomona College http://www.pomona.edu
Follow us on:
http://www.twitter.com/pomonacollege
http://www.facebook.com/pomonacollege
http://www.vimeo.com/pomonacollege
http://www.youtube.com/pomonacollege
http://www.flickr.com/photos/pomona-college
Pomona Staff Mailing List
SAVE THE DATE: MAY 7TH
Hi, everyone,
We are talking to Pomona College about a memorial for Bill. It looks like May 7th is what we are looking at. This isn't set in stone yet, but if it works out logistically with Pomona College, we will probably finalize it. It happens to be a day after Bill's 69th Birthday. We do not know what time it would be yet. Will post details as soon as we find out more..
Kris
We are talking to Pomona College about a memorial for Bill. It looks like May 7th is what we are looking at. This isn't set in stone yet, but if it works out logistically with Pomona College, we will probably finalize it. It happens to be a day after Bill's 69th Birthday. We do not know what time it would be yet. Will post details as soon as we find out more..
Kris
Sympathies
I first want to express my heartfelt sympathies to Mr. Banks's family and friends, especially Bill Prinzmetal, on the Bill's death. I know also that there are many other friends, colleagues, and students who are deeply saddened by this sorrowful news. This is a great loss to all of us.
Mr. Banks, as I always referred to him when I was his student working on the semantic congruity effect, was a tremendous "major professor" to work under because of his intelligence, curiosity, intensity, and energy. I have been flooded with fond memories of our days working together and of taking classes from him. I remembered the different colored socks, pulling bread crusts out of his jacket pocket during class and nibbling on them, sticking pencils in his office ceiling with a quick upward toss. I also remembered his humor, his gum chewing, and his concern over the food he ate. Many memories flooded my mind. In recent years I looked forward to seeing him at Psychonomics. Indeed, the last time I saw him was at Psychonomics in Boston where I attended his "free won't" presentation. It was fascinating stuff, as usual.
I am certain that his loss is felt far and wide. He was a most interesting man.
Bill Sturgill
Mr. Banks, as I always referred to him when I was his student working on the semantic congruity effect, was a tremendous "major professor" to work under because of his intelligence, curiosity, intensity, and energy. I have been flooded with fond memories of our days working together and of taking classes from him. I remembered the different colored socks, pulling bread crusts out of his jacket pocket during class and nibbling on them, sticking pencils in his office ceiling with a quick upward toss. I also remembered his humor, his gum chewing, and his concern over the food he ate. Many memories flooded my mind. In recent years I looked forward to seeing him at Psychonomics. Indeed, the last time I saw him was at Psychonomics in Boston where I attended his "free won't" presentation. It was fascinating stuff, as usual.
I am certain that his loss is felt far and wide. He was a most interesting man.
Bill Sturgill
Tuesday, April 26, 2011
Send comments
From Arlene. Thanks to all who have been following Bill's story. Today's been a hard day. We are sad, tired, but thankful that Bill's suffering is over. He fought this relentless disease with all he had.
Several people told me today that their computers just wouldn't let them access the blog to post or to comment. If you would like to share a thought on this blog, please send it to me (plannerlene@yahoo.com) or to Abigail (abbybanksisalive@gmail.com) and we will post it.
Several people told me today that their computers just wouldn't let them access the blog to post or to comment. If you would like to share a thought on this blog, please send it to me (plannerlene@yahoo.com) or to Abigail (abbybanksisalive@gmail.com) and we will post it.
From Liz Deese
From Liz Deese---
I am saddened by this news. I have read some of the blogs on and off. What really stands out is Bill's enduring sense of humor; even in the midst of such profound suffering, there were sparks of Bill's delightfully quirky, ironic humor.
I recall the many family-and-friends (Deese-Rothe, Barnes, Banks) Thanksgiving gatherings in Claremont from so many, many years ago, and always, Bill provided much fodder for laughter, either with his wildly funny (and often profound) observations and commentary or with his antics.
Embedded in Bill's humor was a broad-reaching understanding--- intelligent and deep.
And I still remember his fried green tomatoes he made every year, and the salad dressing he concocted when he was going through his "Lecethin" phase.
It is a gift indeed when someone dies and leaves all those who knew him smiling.
(Note from Arlene. Bill knew Liz from the time she was a young teen and he was one of her father's psych graduate students at Johns Hopkins, 1964-68. Later Liz attended Pomona, and she and her Claremont family spent much time together with our family.)
Bill passed away on 4/25 10pm
Hi, everyone,
So Abby and I received the dreaded phone call from the doctors late last night. Bill's heart rate flatlined again and they did not resuscitate him per his/our instructions. Abby, Arlene, and I arrived at the hospital as soon as we heard the news and spent several hours by Bill's side before seeing him off.
At this point we are just trying to let as many people who knew Bill as possible. We are making a list of things we have to do.
Thank you so much for being a part of the community of care for Bill. It has been an enormous comfort for me.
Kris
So Abby and I received the dreaded phone call from the doctors late last night. Bill's heart rate flatlined again and they did not resuscitate him per his/our instructions. Abby, Arlene, and I arrived at the hospital as soon as we heard the news and spent several hours by Bill's side before seeing him off.
At this point we are just trying to let as many people who knew Bill as possible. We are making a list of things we have to do.
Thank you so much for being a part of the community of care for Bill. It has been an enormous comfort for me.
Kris
Monday, April 25, 2011
Bill's 69th Birthday is May 6
Hi, everyone,
Bill's birthday is coming up in a couple of weeks and we hope to celebrate it at the hospital (or at the nursing home). My mother's idea of bringing him a cake was nixed as sadistic since Bill can't eat any of it (and he's been craving food). Abby thought balloons and cards would be great. We will definitely sing him a song. Sophie and Olivia said they'd like to bring him a present. When I asked them what they had in mind, Sophie said, without hesitation, "Medicine". She really wants him to get better...
Any other ideas about Bill's birthday? Since it falls on a Friday, we will have a gathering in his room in the evening. Anyone who could join us would be welcome! Late April and May is a busy time for Banks family with lots of birthdays, beginning with Olivia (4/23), Josh (5/3), Bill (5/6), and Sophie (5/31).
Abby, Josh, my mom and sister Sunny, Sophie and Olivia had a wonderful time celebrating Olivia's 6th birthday Saturday evening at the California Pizza Kitchen in Hollywood. Olivia chose the restaurant. The girls like their brother Josh and are especially attached to Abby. When I was away a couple weekends ago to New York, they requested that Abby take care of them :)
Josh told us all about his life in Thailand and he seems to really love it there.
Abby and Josh got both girls cute kid friendly cameras, among other things. They really loved them. Sophie got Olivia a 'pillow pet', a huge cuddly whale shaped stuffed animal that you could use also as a pillow. Of course Olivia has been carrying it around everywhere.
The highlight of the evening was the presentation of cake Sunny brought. It was a beautiful white cake with fruit top and six long candles. Olivia's wish before blowing out the candles was to grow up fast! How cute is that.. Later she elaborated that she could not wait to get older so that she could become a famous singer and a scientist.
And Shirley, thanks for sending Olivia a birthday card. She read it to herself!
Affter endless negotiations, the girls finally settled on having their joint birthday party at a roller skating rink sometime in May, when they get to invite their friends.
Good night everyone!
Bill's birthday is coming up in a couple of weeks and we hope to celebrate it at the hospital (or at the nursing home). My mother's idea of bringing him a cake was nixed as sadistic since Bill can't eat any of it (and he's been craving food). Abby thought balloons and cards would be great. We will definitely sing him a song. Sophie and Olivia said they'd like to bring him a present. When I asked them what they had in mind, Sophie said, without hesitation, "Medicine". She really wants him to get better...
Any other ideas about Bill's birthday? Since it falls on a Friday, we will have a gathering in his room in the evening. Anyone who could join us would be welcome! Late April and May is a busy time for Banks family with lots of birthdays, beginning with Olivia (4/23), Josh (5/3), Bill (5/6), and Sophie (5/31).
Abby, Josh, my mom and sister Sunny, Sophie and Olivia had a wonderful time celebrating Olivia's 6th birthday Saturday evening at the California Pizza Kitchen in Hollywood. Olivia chose the restaurant. The girls like their brother Josh and are especially attached to Abby. When I was away a couple weekends ago to New York, they requested that Abby take care of them :)
Josh told us all about his life in Thailand and he seems to really love it there.
Abby and Josh got both girls cute kid friendly cameras, among other things. They really loved them. Sophie got Olivia a 'pillow pet', a huge cuddly whale shaped stuffed animal that you could use also as a pillow. Of course Olivia has been carrying it around everywhere.
The highlight of the evening was the presentation of cake Sunny brought. It was a beautiful white cake with fruit top and six long candles. Olivia's wish before blowing out the candles was to grow up fast! How cute is that.. Later she elaborated that she could not wait to get older so that she could become a famous singer and a scientist.
And Shirley, thanks for sending Olivia a birthday card. She read it to herself!
Affter endless negotiations, the girls finally settled on having their joint birthday party at a roller skating rink sometime in May, when they get to invite their friends.
Good night everyone!
Sunday, April 24, 2011
hi Abby here,
I would like to thank Kris so much for helping make decisions about my Dad's health with me. I could not handle asking him if he wanted to be brought back in case of another heart failure. I tried bring it up with him alone, and it did not go well. She was able to ask in a very kind clear way and it made all the difference.
Josh and I have been visiting Dad everyday since Josh arrived. The last few days have been very hard for Dad, he seems weak and tired and grouchy. Poor dad! I noticed today his nose is changing to a purplish like his toes and fingers. He's been shaking and not feeling good at all.
Dede, Russ, and Sara were here today, left a nice card and flowers. thank you!
I would like to thank Kris so much for helping make decisions about my Dad's health with me. I could not handle asking him if he wanted to be brought back in case of another heart failure. I tried bring it up with him alone, and it did not go well. She was able to ask in a very kind clear way and it made all the difference.
Josh and I have been visiting Dad everyday since Josh arrived. The last few days have been very hard for Dad, he seems weak and tired and grouchy. Poor dad! I noticed today his nose is changing to a purplish like his toes and fingers. He's been shaking and not feeling good at all.
Dede, Russ, and Sara were here today, left a nice card and flowers. thank you!
Greetings from the mountains. Wednesday's post didn't show an option for comments. Maybe I missed it in my techno-bumbling, or maybe you don't want comments on such a critical and personal decision. But where fools rush in, I usually find myself near the front, and so... It seems so fortunate that Bill's mind was clear and sharp on the day you had to ask him his wishes, and Abby and Kris were so brave to ask directly. I doubt many people have such a devoted team in their corner. We can all mark a box on a living will while we're middle-aged and healthy, but attitudes change and much is accommodated later in life. A marked box is so inadequate when making life-and-death decisions concerning a loved one's quality of living at a given moment under individual circumstances.
If the time comes that you want more information from the national kidney organizations on dialysis during hospice (perhaps for future needs), I'll look into it more deeply. I know it is terribly frustrating to hear one thing from Bill's team and another from outside. Clearly, you have to make decisions based on the options that his doctors will allow. And there is no way at this point that Bill could be transported back and forth to a dialysis center every day without putting him in more danger.
Please forgive if you didn't want comments on this. Bravo for staying strong through such hard times.
--Janet
If the time comes that you want more information from the national kidney organizations on dialysis during hospice (perhaps for future needs), I'll look into it more deeply. I know it is terribly frustrating to hear one thing from Bill's team and another from outside. Clearly, you have to make decisions based on the options that his doctors will allow. And there is no way at this point that Bill could be transported back and forth to a dialysis center every day without putting him in more danger.
Please forgive if you didn't want comments on this. Bravo for staying strong through such hard times.
--Janet
Wednesday, April 20, 2011
Talking to Bill about choices
So Abby and I met with the palliative care team (two doctors, one social worker, and a minister) at 3p Wed. Josh, who did not want to participate in the discussion, agreed to look after Sophie and Olivia in the waiting room.
At the meeting, the doctors told us that palliative/hospice care meant no feeding tube and no dialysis. They did not believe any nephrologists would sign off on Bill getting in-home dialysis because of dangers associated with doing so. So the only option is to commute to dialysis facility in the community. And the logistics/health risks to Bill would be enormous in this scenario: I live on a second floor. Bill is completely immobile, and often in pain. To move him out of bed into a gurney, gather up all his tubes, carry him down a narrow set of stairs, and unload him in some kind of special chair or bed in the van for the ride will take two men, physically strong and medically trained. To do this on both ends of the trip, several times a week seemed untenable.
It dawned on me that having Bill at home, as long as he receives dialysis, would be too hard for us and too risky for his health. But neither Abby nor I are prepared to discontinue his dialysis, which, the doctors predicted would hasten his death. They predicted that it would be a matter of, at the most, a week or two or three before Bill would slip into unconsciousness and then to death.
We told doctors what we are prepared to do was to not resuscitate him if his heart or lungs stopped working again.
The palliative team thought this was an important decision and produced a pink medical instruction sheet summarizing our desires. The attending signed off on the form and pushed it towards Abby and I for our signature. I could not sign the form right there and then. What if we are making a wrong decision for Bill? We needed to sleep on it at least for one night. To their credit, the team assured us that we could take time to make the decision. They were not ready to discharge Bill from the hospital any time soon anyway, as they felt his condition was still too unstable.
After the hour long meeting, Abby and I concluded that we needed to talk to Bill again about what he wanted to do. But Bill was too wiped out to hold this conversation after a three hour dialysis session so we decided to try again on Thursday.
Around 5p, Andrea Chung, a student of Bill's from a decade ago, came. She flew in from Hong Kong to visit Bill. I love Andrea; I remember that she made a donation honoring Bill when she was at Harvard Business School following graduation from Pomona. She was also a wonderful hostess when Bill and I visited her in Hong Kong in 2004 on our way to adopt Sophie in mainland China.
My sister Sunny also came by. She was eager to find out how our meeting with the doctors went and was happy to hear that Bill was not leaving the hospital anytime soon. While Andrea, Sophie, Olivia and I went out to dinner to a local Thai restaurant called Ocha (this has become our favorite hang out place since Eileen and Lee had taken us there when Betsy was visiting), my sister took my mother to dinner at Ikea (their favorite restaurant). Abby and Josh remained behind to keep Bill company.
I arrived at the hospital in late Thursday afternoon. Abby and Josh were already there. Bill was alert. I thought it was a perfect time to bring up the pink form. Amazingly what Abby and I told the doctors the day before was what Bill exactly wanted: Very clearly he told us he did not want CPR if his heart flatlined again. But he definitely wanted dialysis and tube feeding.
We asked him about his quality of life at the hospital. Remarkably he said he was not unhappy. He also denied feeling miserable. He was not bored. He felt ok about being in the hospital. Both Abby and I felt relieved to hear this.
While the nurse attended to Bill, Abby and I signed off on the pink form.
At the meeting, the doctors told us that palliative/hospice care meant no feeding tube and no dialysis. They did not believe any nephrologists would sign off on Bill getting in-home dialysis because of dangers associated with doing so. So the only option is to commute to dialysis facility in the community. And the logistics/health risks to Bill would be enormous in this scenario: I live on a second floor. Bill is completely immobile, and often in pain. To move him out of bed into a gurney, gather up all his tubes, carry him down a narrow set of stairs, and unload him in some kind of special chair or bed in the van for the ride will take two men, physically strong and medically trained. To do this on both ends of the trip, several times a week seemed untenable.
It dawned on me that having Bill at home, as long as he receives dialysis, would be too hard for us and too risky for his health. But neither Abby nor I are prepared to discontinue his dialysis, which, the doctors predicted would hasten his death. They predicted that it would be a matter of, at the most, a week or two or three before Bill would slip into unconsciousness and then to death.
We told doctors what we are prepared to do was to not resuscitate him if his heart or lungs stopped working again.
The palliative team thought this was an important decision and produced a pink medical instruction sheet summarizing our desires. The attending signed off on the form and pushed it towards Abby and I for our signature. I could not sign the form right there and then. What if we are making a wrong decision for Bill? We needed to sleep on it at least for one night. To their credit, the team assured us that we could take time to make the decision. They were not ready to discharge Bill from the hospital any time soon anyway, as they felt his condition was still too unstable.
After the hour long meeting, Abby and I concluded that we needed to talk to Bill again about what he wanted to do. But Bill was too wiped out to hold this conversation after a three hour dialysis session so we decided to try again on Thursday.
Around 5p, Andrea Chung, a student of Bill's from a decade ago, came. She flew in from Hong Kong to visit Bill. I love Andrea; I remember that she made a donation honoring Bill when she was at Harvard Business School following graduation from Pomona. She was also a wonderful hostess when Bill and I visited her in Hong Kong in 2004 on our way to adopt Sophie in mainland China.
My sister Sunny also came by. She was eager to find out how our meeting with the doctors went and was happy to hear that Bill was not leaving the hospital anytime soon. While Andrea, Sophie, Olivia and I went out to dinner to a local Thai restaurant called Ocha (this has become our favorite hang out place since Eileen and Lee had taken us there when Betsy was visiting), my sister took my mother to dinner at Ikea (their favorite restaurant). Abby and Josh remained behind to keep Bill company.
I arrived at the hospital in late Thursday afternoon. Abby and Josh were already there. Bill was alert. I thought it was a perfect time to bring up the pink form. Amazingly what Abby and I told the doctors the day before was what Bill exactly wanted: Very clearly he told us he did not want CPR if his heart flatlined again. But he definitely wanted dialysis and tube feeding.
We asked him about his quality of life at the hospital. Remarkably he said he was not unhappy. He also denied feeling miserable. He was not bored. He felt ok about being in the hospital. Both Abby and I felt relieved to hear this.
While the nurse attended to Bill, Abby and I signed off on the pink form.
choices
From Arlene: Based on Janet's research and Luisiri's response, there is something to lose with rituximab; Bill could feel a lot worse from side effects and complications. It is terribly disappointing that there is no treatment that can help slow down the scleroderma. What we don't know is whether it might slow down on its own and allow him to plateau for a while.
We want him to be as pain free and anxiety free as possible consistent with mental presence. However, given a choice between comfort and awareness, and a choice between comfort and life extension, Bill's health care directive says to err on the side of comfort. We don't know if he still agrees with this but that was his choice when the directive was prepared.
On Monday he was lucid, present, and responsive for a short time (he tired quickly), but I did not ask him this difficult question.
We want him to be as pain free and anxiety free as possible consistent with mental presence. However, given a choice between comfort and awareness, and a choice between comfort and life extension, Bill's health care directive says to err on the side of comfort. We don't know if he still agrees with this but that was his choice when the directive was prepared.
On Monday he was lucid, present, and responsive for a short time (he tired quickly), but I did not ask him this difficult question.
e-mail exchange with Dr. Luisiri
I got an email back from Dr. Luisiri, Bill's rheumatologist. Here's what he said:
dear Kris
i am extremely skeptical about rituximab effectiveness in scleroderma. in addition, it can suppress immune system significantly. i need to do some research on that. no matter what, his overall health is still very fragile and he is not suitable to receive any strong immunosuppressive agents. rituximab, at this point, will do more harm than good. of course, all of us including bill will pass away one of these days. but rituximab can put him at significant risk for severe infection, resulting in unexpected death.
Phot Luisiri
NOTICE TO RECIPIENT: If you are not the intended recipient of this e-mail, you are prohibited from sharing, copying, or otherwise using or disclosing its contents. If you have received this e-mail in error, please notify the sender immediately by reply e-mail and permanently delete this e-mail and any attachments without reading, forwarding or saving them. Thank you.
Dr. Luisiri,
Again, thank you so much for following up on our request. He seems to be getting better (now he is in room 7798) but certainly his scleroderma is advancing (he has more red spots on face and three more black toes).
Please let me know if it makes sense for us to try rituximab that Dr. Furst recommended? I know you're skeptical, BUT we believe we have NOTHING to lose by trying. He's going to die anyway so why not try it???
Please please let us know. I don't want to waste precious time.
Kris
dear Kris
i am extremely skeptical about rituximab effectiveness in scleroderma. in addition, it can suppress immune system significantly. i need to do some research on that. no matter what, his overall health is still very fragile and he is not suitable to receive any strong immunosuppressive agents. rituximab, at this point, will do more harm than good. of course, all of us including bill will pass away one of these days. but rituximab can put him at significant risk for severe infection, resulting in unexpected death.
Phot Luisiri
NOTICE TO RECIPIENT: If you are not the intended recipient of this e-mail, you are prohibited from sharing, copying, or otherwise using or disclosing its contents. If you have received this e-mail in error, please notify the sender immediately by reply e-mail and permanently delete this e-mail and any attachments without reading, forwarding or saving them. Thank you.
Kris 04/18/2011 08:07 PM |
|
Dr. Luisiri,
Again, thank you so much for following up on our request. He seems to be getting better (now he is in room 7798) but certainly his scleroderma is advancing (he has more red spots on face and three more black toes).
Please let me know if it makes sense for us to try rituximab that Dr. Furst recommended? I know you're skeptical, BUT we believe we have NOTHING to lose by trying. He's going to die anyway so why not try it???
Please please let us know. I don't want to waste precious time.
Kris
Cultural difference
Wednesday 4/20/11. I am at the hospital. Bill is much more alert but has visual and auditory confusions and misperceptions. He does have his voice back and talks pretty well. He said he was looking forward to getting better.
But he was in significant pain (8 on a scale of zero to ten, ten being the worst pain he's ever experienced) and we eventually asked for morphine, which could not work fast enough. An hour after its administration, Bill is finally resting and is in and out of sleep. We watched a bit of Eve's video. He gave a big smile when her baby Insee appeared on screen. He could not believe how big he was!
At 2p, I will have to leave here to go get Sophie and Olivia; neither of the two nannies is available today. I will then bring them back here at the hospital so they will have a chance to see their dad and hang out in his room now that he is out of the ICU.
At 3p today Abby and I will meet with the doctors to talk about logistics of moving Bill out of the hospital. We will try to determine hospice facility or home would be better for him.
When I told my Korean mother that we are thinking of taking Bill out of the hospital she became very very indignant. She could not believe that his loved ones would let him die. She, very heatedly, talked about her sister-in-law who was kept alive for five years before expiring. She doesn't understand the concept of quality of life. For her, the important thing is to be alive, no matter how poor the quality of that experience. And the idea of respecting the patient's own view about it does not make sense at all to her. "Of course he'd want to live", she shouted. She can't imagine anyone not wanting to continue living.
My sister Sunny is the same way. She along with my mother have decided that the hospital wants to save money. "They must be trying to kick him out".
Ugh... I just don't need this now. While I am trying to come to terms with hospice care (in one form or another), my family thinks I am abandoning him to die if we did so.
But he was in significant pain (8 on a scale of zero to ten, ten being the worst pain he's ever experienced) and we eventually asked for morphine, which could not work fast enough. An hour after its administration, Bill is finally resting and is in and out of sleep. We watched a bit of Eve's video. He gave a big smile when her baby Insee appeared on screen. He could not believe how big he was!
At 2p, I will have to leave here to go get Sophie and Olivia; neither of the two nannies is available today. I will then bring them back here at the hospital so they will have a chance to see their dad and hang out in his room now that he is out of the ICU.
At 3p today Abby and I will meet with the doctors to talk about logistics of moving Bill out of the hospital. We will try to determine hospice facility or home would be better for him.
When I told my Korean mother that we are thinking of taking Bill out of the hospital she became very very indignant. She could not believe that his loved ones would let him die. She, very heatedly, talked about her sister-in-law who was kept alive for five years before expiring. She doesn't understand the concept of quality of life. For her, the important thing is to be alive, no matter how poor the quality of that experience. And the idea of respecting the patient's own view about it does not make sense at all to her. "Of course he'd want to live", she shouted. She can't imagine anyone not wanting to continue living.
My sister Sunny is the same way. She along with my mother have decided that the hospital wants to save money. "They must be trying to kick him out".
Ugh... I just don't need this now. While I am trying to come to terms with hospice care (in one form or another), my family thinks I am abandoning him to die if we did so.
Tuesday, April 19, 2011
A Virtual Hello!
Hi!
I'm not sure how soon I could travel down. So, we recorded a brief video to say Hi to Bill in the meantime. If you think this could help lift his spirits, with friends saying hello, here is the link to the youtube video. If he's not ready to watch, please just let him know we are thinking about him everyday!
http://www.youtube.com/watch?v=MrjiPcXGhoQ
eve
I'm not sure how soon I could travel down. So, we recorded a brief video to say Hi to Bill in the meantime. If you think this could help lift his spirits, with friends saying hello, here is the link to the youtube video. If he's not ready to watch, please just let him know we are thinking about him everyday!
http://www.youtube.com/watch?v=MrjiPcXGhoQ
eve
Pomona Alum
Had a visit from Ken Bachrach '76. He was visiting Pomona today with his son and wanted to stop by to see how Bill was. He wanted me to send Bill his best wishes, and to let him know that he now is a psychologist. He has many fond memories of Bill's classes.
Sandy
Sandy
Rituximab
Here's the info on Rituximab, Kris. I wish it were more encouraging, given the decision you're all facing. It’s been used since 1997 to treat lymphoma and rheumatoid arthritis, by killing B cells of the immune system. These cells cause inflammation when they attack foreign intruders in the body. However, in auto-immune system diseases like scleroderma, they attack the body itself. Reducing B cells has the advantage of reducing their attack on the body, but the disadvantage of reducing their ability to protect the body by fighting off infections. The brand name for this drug is Rituxan, and it is given intra-venously over a period of a few hours. Usually it is administered once a week, but perhaps Dr. Furst has found a more effective schedule for scleroderma.
Unfortunately, Rituximab has an extremely long list of side effects and chances of fatal complications in patients with heart rhythm, lung, or kidney problems. It cannot be given to patients who have an active infection, recent live vaccines (including flu), or are on medications to suppress the immune system or reduce high blood pressure. Visitors who have had recent live vaccines also pose a danger to the patient. I believe Bill falls into several of these categories, so this drug might be very dangerous for him.
The most common of the many side effects is fever, rigors, and chills experienced by more than 80% of patients. These effects are severe in 4-7 out of every 10,000 patients. “Other common side effects related to rituximab are nausea, hives, fatigue, headache, itching, difficulty breathing due to bronchospasm, a sensation of swelling of the tongue or throat, runny nose, vomiting, decreased blood pressure, flushing.” (The Mayo Clinic lists another 20 or 30 side effects in addition to these.) Bill is in such weak condition that any side effect could be quite serious.
The most frightening quote was on the Medicine Net site: “WARNING: Rituximab may infrequently cause serious (sometimes fatal) side effects including severe breathing problems (e.g., hypoxia, pulmonary infiltrates, acute respiratory distress syndrome) or heart problems (e.g., heart attack, irregular heartbeat, low blood pressure).” I worry that such complications, if not outright fatal, would cause Bill more suffering.
As always, I hope fellow bloggers with medical backgrounds will correct any misinterpretations I might have made.
My heart and thoughts are with you all.
--Janet
letting go
Saw Bill at the hospital in the 7th floor. He is doing better--alert and off ventilator and oxygen tube. I can't stop sobbing whenever I see him since the talk with the palliative care team last Wed. They were aggressive and unequivocal in telling Abby and me that he was going to die. One doctor said it was a matter of weeks to months and another said it was a matter of days. Both Abby and I were crying.
On Friday night I had a conversation with Abby about what to do. We considered Bill's wish to die at home in his medical directives. Knowing this, we both concluded that if Bill deteriorated significantly further then the best thing to do was to take him home. I feel certain that for Bill, being with Sophie and Olivia at home would be a most meaningful way to spend his last remaining days.
I got Sophie and Olivia a picture book called "Invisible String" to prepare them for Bill's death. The book talks about an invisible string of love that connects people even when they are not physically here. I've been talking to them about their dad being in their hearts, even if he is not with us.
I still hold out for a hope for an experimental drug for scleroderma. I am still talking to Dr. Luisiri about a drug Dr. Furst recommended called Rituximab. But I am beginning to realize that I might be clinging to an unrealistic hope.
I am heartened by Janet's research that shows Bill can still get dialysis with hospice care. Hopefully Abby will talk to the social worker tomorrow if Bill could continue his feeding tube at home.
Janet, btw, could you look into Rituximab? Anything you can find out about that would help us.
And Eve, it would be wonderful to see you, Arnie and your baby. Please visit us when you can.
Kris
On Friday night I had a conversation with Abby about what to do. We considered Bill's wish to die at home in his medical directives. Knowing this, we both concluded that if Bill deteriorated significantly further then the best thing to do was to take him home. I feel certain that for Bill, being with Sophie and Olivia at home would be a most meaningful way to spend his last remaining days.
I got Sophie and Olivia a picture book called "Invisible String" to prepare them for Bill's death. The book talks about an invisible string of love that connects people even when they are not physically here. I've been talking to them about their dad being in their hearts, even if he is not with us.
I still hold out for a hope for an experimental drug for scleroderma. I am still talking to Dr. Luisiri about a drug Dr. Furst recommended called Rituximab. But I am beginning to realize that I might be clinging to an unrealistic hope.
I am heartened by Janet's research that shows Bill can still get dialysis with hospice care. Hopefully Abby will talk to the social worker tomorrow if Bill could continue his feeding tube at home.
Janet, btw, could you look into Rituximab? Anything you can find out about that would help us.
And Eve, it would be wonderful to see you, Arnie and your baby. Please visit us when you can.
Kris
Monday, April 18, 2011
HI this is Abby here-
he has moved to room 7789. this is not the ICU. They have started his phis. therapy again, just sitting up at the edge of the bed, moving legs/arms neck around.
my mom, and brother Josh are here today. Josh got in Saturday from Thailand. he'll be here for about 2 weeks.
I called and now i am waiting for the social worker to come by and give me a print out about kaiser palliative care and hospice care. it's sounding like we are headed towards palliative/pain management care, but we still have lots of questions and don't have all the info we need yet.
He has been awake, talking quietly here and there. He looks better everyday, but overall, weak and tired.
He was very Happy to see Josh for the first time in over a year ! Smiling and asking questions. little bit confused (" have you learned any Russian?" Josh has been in various countries in Asia for almost 7 years) and some coherent questions (''where is the new school your are teaching in?" Josh has been teaching English in schools everywhere he goes.)
His stomach hurts, his toes are still hurting. They give him pain meds when he complains. They are going to do an ultra sound of his kidneys soon if not sometime today. The docs want to see what they look like at this point in time. He has been doing dialysis daily.
that's all for now.. I'll update as I get more info. Debby, thanks for the new yorker link. Janet thanks for the Dialysis in hospice articles.
he has moved to room 7789. this is not the ICU. They have started his phis. therapy again, just sitting up at the edge of the bed, moving legs/arms neck around.
my mom, and brother Josh are here today. Josh got in Saturday from Thailand. he'll be here for about 2 weeks.
I called and now i am waiting for the social worker to come by and give me a print out about kaiser palliative care and hospice care. it's sounding like we are headed towards palliative/pain management care, but we still have lots of questions and don't have all the info we need yet.
He has been awake, talking quietly here and there. He looks better everyday, but overall, weak and tired.
He was very Happy to see Josh for the first time in over a year ! Smiling and asking questions. little bit confused (" have you learned any Russian?" Josh has been in various countries in Asia for almost 7 years) and some coherent questions (''where is the new school your are teaching in?" Josh has been teaching English in schools everywhere he goes.)
His stomach hurts, his toes are still hurting. They give him pain meds when he complains. They are going to do an ultra sound of his kidneys soon if not sometime today. The docs want to see what they look like at this point in time. He has been doing dialysis daily.
that's all for now.. I'll update as I get more info. Debby, thanks for the new yorker link. Janet thanks for the Dialysis in hospice articles.
Dialysis during Hospice
Here's some reliable info on hospice. The second one talks in detail about continuing dialysis during hospice:
http://www.hospicenet.org/
www.kidneyeol.org/hospice.htm
So glad to hear Bill has escaped ICU. --Janet
http://www.hospicenet.org/
www.kidneyeol.org/hospice.htm
So glad to hear Bill has escaped ICU. --Janet
Sunday, April 17, 2011
Visiting?
Hello!
Per the last post, I'm glad Bill's out of the ICU.
I was hoping to visit. Is there a more preferred time for him to receive visitors?
Certainly, I wouldn't want to impose, but I would like to see him. I'm still recovering from my c-section, but if sooner is better than later, I will arrange to come down.
Please let Bill know we are thinking of him!
Eve & Arne (and Baby Insee)
Per the last post, I'm glad Bill's out of the ICU.
I was hoping to visit. Is there a more preferred time for him to receive visitors?
Certainly, I wouldn't want to impose, but I would like to see him. I'm still recovering from my c-section, but if sooner is better than later, I will arrange to come down.
Please let Bill know we are thinking of him!
Eve & Arne (and Baby Insee)
Friday, April 15, 2011
Hospice
MDs are trained to aggressively fight to maintain life, regardless of prognosis, and are sometimes not very good at discussing palliative care or end of life issues. According to a recent article I read in the New Yorker, MDs are careful about how much pain meds they prescribe because they worry about law suits. This is not an issue in hospice. Hospice is concerned about comfort of the patient which includes pain management and presence of friends and family. It has been difficult to see Bill recently because it is so wrenching to see someone I love in so much pain. It seems his pain could be managed better. Everything I have heard from people who have had experiences with hospice has been very positive. Bill and I had a colleague at Pomona, Bill Whedbee, who died of cancer and spent time in hospice. The partner of another colleague also died of cancer and spent time in hospice. In both cases, their significant others told me that hospice worked wonders in terms of mitigating pain and developing ways to increase comfort. We know systemic scleroderma is an unforgiving disease that people do not recover from. Distressing as it is, we do need to think about how Bill’s life will end. Abigail said it so well when she drew the picture of Bill dying in ICU surrounded by strangers trying to bring him back. There is an alternative scenario which seems more peaceful.
I urge you to read the New Yorker article on hospice: http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande
Debby
Thursday, April 14, 2011
the charge nurse asked me to take home the computer and ipod-- she is worried they will get stolen. she's the second nurse to ask me to do so.. so i guess i will tonight.
today was a good day. Dad was awake, aware, talking moving his head arms and legs around today. when he talks it sometimes doesn't make too much sense. but, some times he does make sense and he understands and asks questions that make sense etc. i have to say it is so nice to see him like this, making sense, awake, laughing . But -- he is much weaker than a few weeks ago.
One of the doctors overseeing him said to me today he thinks it might be a good option to take Dad to a hospice situation sooner rather than waiting until he can't leave.
I am not really quite sure what to do. i think the doctors are asking us to act and make decisions.
on one hand he may prefer to be somewhere comfortable, where all friends and family can visit as long as they choose to visit, and be around all his children. On the other hand, is he willing (and are we willing ) to be brave enough to say this could be the end? Also, have we truly exhausted everything we can do with out hurting him? If he needs aggressive treatment again, does he really want that? I asked him today if he can't breathe again, does he want them to put in the air tube again and he shook his head no. i took this with a grain of salt, wondering, is he thinking clearly? would ANY aware awake person choose to have a horrible tube shoved into their throat, even if it will save them?
The father of my close friend in Vermont passed way just a few months ago of a brain cancer. he chose to be at home and over a course of weeks, family and friends and special hospice nurses rotated being right there with him 24/7. after a few events happened in one evening-- they knew he was close to dying, they called each other and everyone came to the house and was there for his last moments. this was very helpful and supportive for my friend (he's 24 years old); his sister and mother and everyone was there, seeing the community connected to him, and they could console each other. i think it will be very important to Sophie and Olivia now and later in life to know and see how much we all love and care about our Dad. i think this choice may be better than dying in a hospital icu, with mostly nurses and doctors trying to aggressively bring him back. let me know how you feel about this and any other ideas very welcome.
today was a good day. Dad was awake, aware, talking moving his head arms and legs around today. when he talks it sometimes doesn't make too much sense. but, some times he does make sense and he understands and asks questions that make sense etc. i have to say it is so nice to see him like this, making sense, awake, laughing . But -- he is much weaker than a few weeks ago.
One of the doctors overseeing him said to me today he thinks it might be a good option to take Dad to a hospice situation sooner rather than waiting until he can't leave.
I am not really quite sure what to do. i think the doctors are asking us to act and make decisions.
on one hand he may prefer to be somewhere comfortable, where all friends and family can visit as long as they choose to visit, and be around all his children. On the other hand, is he willing (and are we willing ) to be brave enough to say this could be the end? Also, have we truly exhausted everything we can do with out hurting him? If he needs aggressive treatment again, does he really want that? I asked him today if he can't breathe again, does he want them to put in the air tube again and he shook his head no. i took this with a grain of salt, wondering, is he thinking clearly? would ANY aware awake person choose to have a horrible tube shoved into their throat, even if it will save them?
The father of my close friend in Vermont passed way just a few months ago of a brain cancer. he chose to be at home and over a course of weeks, family and friends and special hospice nurses rotated being right there with him 24/7. after a few events happened in one evening-- they knew he was close to dying, they called each other and everyone came to the house and was there for his last moments. this was very helpful and supportive for my friend (he's 24 years old); his sister and mother and everyone was there, seeing the community connected to him, and they could console each other. i think it will be very important to Sophie and Olivia now and later in life to know and see how much we all love and care about our Dad. i think this choice may be better than dying in a hospital icu, with mostly nurses and doctors trying to aggressively bring him back. let me know how you feel about this and any other ideas very welcome.
Wednesday Meeting
Arlene here - Abigail and Kris may want to add to/correct this post; both are busy today. I'm writing to note that they met with a team of doctors yesterday (different from previous teams) to discuss whether Bill should be resuscitated if he "goes flatline" again and/or be re-intubated if he has severe breathing difficulties again. The team emphasized that the prognosis is grim.
It seems that, on the one hand, both procedures are painful and frightening and should not be done again because they would increase his suffering, but, on the other hand, Bill has not indicated that he is ready to give up. So far, he has signaled indirectly that he wants to soldier on. In addition, he seems not to want to talk about the issue, although it's hard to tell what's really going on due to his frequent periods of confusion.
Continuing dialysis and tube feeding still makes sense - they are not traumatic and painful.
Abigail said he said very little yesterday but smiled from time to time and seemed relatively comfortable.
It seems that, on the one hand, both procedures are painful and frightening and should not be done again because they would increase his suffering, but, on the other hand, Bill has not indicated that he is ready to give up. So far, he has signaled indirectly that he wants to soldier on. In addition, he seems not to want to talk about the issue, although it's hard to tell what's really going on due to his frequent periods of confusion.
Continuing dialysis and tube feeding still makes sense - they are not traumatic and painful.
Abigail said he said very little yesterday but smiled from time to time and seemed relatively comfortable.
Out on a Limb?
I try not to speak for others, but I'm going to go out on a limb here and guess that all of us on the blog are grateful for the chance to contribute to Bill's health and happiness in any way. It's heartwarming to see so many efforts on his behalf--family members making the long daily trek to his bedside and keeping the rest of us informed on the blog, everyone attending to his home and belongings, local visitors who drop in to see him as well as those who are travelling long distances for the honor of a visit, the cards and letters to give him a few moments of distraction, the kind sentiments everyone sends, the ideas on the blog. Aside from the sadness of Bill's current condition, it is pure pleasure to help someone who has made such a positive difference in our lives and, by extension, to help any member of his family. Thank you for including me.
Just keep those blog questions coming, in case any of us can offer some insight--we seem to work well together! --Janet
Just keep those blog questions coming, in case any of us can offer some insight--we seem to work well together! --Janet
Betsy here. I am amazed at Janet’s translation and understanding of cardiologist’s notes – thanks to Kris’ stealth. I am touched by your care and concern, Janet. Thank you.
I asked the surgeon, Hal Kent, I work with in GA to give me with a “cut to the chase” medical translation of the notes. Hal’s comments are redundant to Janet’s, but I thought I’d add his medical conclusion about the information:
“Some of the bottom line is that they don’t think he’s a good candidate for a pacemaker and they want to treat his heart block by manipulating the drugs that might contribute to the heart block.”
“Of course there are the phrases of “overall poor prognosis” due to his scleroderma and “complicated hospital course”. As I’m sure you can discern, these are not encouraging phrases. I’m not sure what your brother’s wishes or philosophies might be, but there are a number of fairly aggressive things being done currently and it sounds like the likelihood of a good recovery/return to a good quality of life isn’t great.”
“Sorry he’s so sick. Let me know if you have any further questions.”
I was encouraged to hear that Bill was being aggressively treated. And, of course, what Bill is experiencing is heart-breaking. Betsy
Betsy Ryland, Ph.D
Psychologist
Wednesday, April 13, 2011
Addendum to the translation
From Christopher Flora-Tostado: That is a damn fine job translating that medical jargon. I look at the original medical note and think "how elegant, to say so much in so little space" but I know most people just throw up their hands and give up. This community approach to translating the note is amazing. Few people get this education about their medical treatments and have no idea what is going on in their bodies ever (or the bodies of their loved ones).
Telemetry - this does indeed refer to monitoring the patient's heart rhythms externally. This is done by two methods: by EKG (a brief but complex (12-lead) snapshot of the heart rhythm) and by cardiac monitoring(using only a single lead (lead II) and monitoring the heartbeats continuously. EKGs are great pictures of the heart rhythm but don't occur for long enough to capture some things like ectopic beats that occur only occasionally. Much like an ectopic pregnancy, means egg implantation outside of the uterus, this means beats that are outside the regular rhythm of the heart.
Tuesday, April 12, 2011
Thanks for all your help!
I want to thank Janet, Lee, Betsy, and Julienne for their helpful responses to Bill's medical notes. I bet what keeps Bill going is all the love and care..
Kris
Kris
Monday, April 11, 2011
Translation 101
So glad to hear Bill smiles when he wakes up! OK, here’s an attempt at translating the cardiologist’s note, posted April 10.
MGUS - Monoclonal Gammopathy of Undetermined Significance. This refers to a blood result showing an unusually high level of an abnormal immune system cell found in the blood. It suggests a systemic auto-immune problem such as lupus, multiple myeloma, scleroderma, etc. A person who has this blood test result but has not been diagnosed with a disease will be monitored in case other symptoms arise that allow a diagnosis to be made. In Bill’s case, it just reinforces the diagnosis of scleroderma.
ILD – Interstitial Lung Disease. A fancy way of referring to scar tissue on the lungs, which reduces the amount of oxygen that the lungs can push into the blood. http://www.mayoclinic.com/health/interstitial-lung-disease/DS00592
Raynaud’s phenomenon – spasms in the blood vessels that interrupt blood flow to the hands and feet.
Dry Gangrene - tissue death caused by interruption of blood flow. There are several types of gangrene. “Dry” refers to gangrene that is not associated with bacterial infection, occurs slowly over time from blood vessel disease (like Raynaud’s), and causes the skin to appear dry.
SOB – shortness of breath
c/b – Could this be an abbreviation for “call back,” meaning that Bill was returned from the hospital to the ICU?
anuric – not passing more than a very small amount of urine per day
AKI – acute kidney injury. “Injury” can refer to illness in this context.
HD – hemodialysis to clean the blood since the kidneys aren’t working.
G tube – stomach feeding tube (“gastronomy tube”)
Dysphasia – impaired ability to communicate due to brain injury. I am almost certain this is a typo and should be dysphagia, which means difficulty swallowing.
So, in English: The patient has blood cells consistent with an auto-immune disease. He has a diagnosis of scleroderma which is complicated by scar tissue on the lungs and blood vessel spasms that have caused tissue death in his hands (fingers), and he was originally admitted with increasing shortness of breath. He has been in the hospital for treatment and was called back to the ICU with acute kidney illness in which he passes little urine and must be on dialysis. He has required multiple intubations (tube down the windpipe for breathing), and he has a stomach feeding tube because he has trouble swallowing.
Now, Part 2:
asystole arrest – absence of hearbeat, no electrical or mechanical activity in the heart.
carvedilol – a drug called “Coreg” that is used to treat high blood pressure and certain types of heart failure by relaxing blood vessels to improve blood flow. The note mentions that Bill was on Coreg when the cardiac arrest ocurred. Coreg can help with certain heart problems, but it can make other types of heart problems worse. That’s one reason why Dr. Watanabe is trying to figure out exactly what caused Bill’s cardiac arrest. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001012/
bifascicular block – Bill’s heart was not receiving the proper electrical signals to continue beating regularly. This implies that his heart muscle and blood vessels are not the problem, but that instead it is something in the electrical conduction system of the heart.
first degree AVB - atrioventricular block. The atrioventricular node is a bundle of tissue between the top two chambers (atria) and the bottom two chambers (ventricles) of the heart. This bundle is responsible for transmitting the electrical signal that keeps the heart beating. When it is blocked, the signal cannot get through properly. (It is the electrical signal, not the blood vessels, that are blocked.) A first degree block is the mildest; third degree is the worst. The first degree block means that signal transmission is a little too slow, causing an improper beating rhythm. Teenagers and well-trained athletes sometimes have this problem, and alone it does not require treatment.
Just for clarification, a “heart attack” refers to impairment of blood flow to the heart muscle. “Cardiac arrest” is not the same thing: it refers to impairment of the conduction of the electrical impluse that makes the heart muscle contract. A pacemaker can regulate the impulse. It sounds to me (guessing here) that Dr. Watanabe is trying to determine whether the electrical impulse problem is serious enough to warrant the attachment of a pacemaker.
primary cardiac – I don’t know what this means. Maybe he is guessing that the heart conduction problem was the primary cause of the cardiac arrest. (Alternatively, it is possible that the strain on Bill’s system from kidney or lung problems led to the cardiac arrest as a kind of side effect.)
telemetry - measurements made by radio signal from a distance. Sorry, I’m lost here. Could it mean simply that the tests were done by EKG from outside the skin rather than directly on the heart?
Mobitz block – This is a test result from an EKG that shows variations of second degree atrioventricular blocks. But this wording is followed by “without higher degree AV block seen.” So, Bill’s results are unusual: he appears to have had only a first degree AV block during cardiac arrest, except for this one type of test that showed variations of a second degree block. The importance of this has to do with the pacemaker—if Bill had only a first degree block (mild slowing of the electrical transfer), then a pacemaker might only be an extra procedure that he shouldn’t undergo given his weak condition. But if he had a second degree block (more significant problem with electrical transfer), then a pacemaker might be necessary.
AV nodal blocking agent: This refers to any drug that might block the atrioventricular node in the heart, that bundle of tissue that transmits the electrical signal from upper to lower chambers. They want to avoid any such medication.
So, part 2 in English: The patient’s heart stopped because the bundle of tissue between the upper and lower chambers of his heart did not transmit the electrical beating impulse properly. The problem appears to have been relatively mild (first degree), with the exception of one test that suggested some second degree blockage of the impulse. This patient is a poor candidate for the pacemaker because he has scleroderma with involvement of several organs and has been in the hospital for a long time with complex problems. The cardiologist recommends stopping Coreg and not prescribing any drug that might block the heart’s beating impulse.
Hope something here might be helpful… Sometimes it just feels comforting to have a little background in normal English rather than all the medical jargon.
--Janet
Hi Abigail Here. Again i apologize for not updating as much as i would like to. finally packed up Dad's house, got it into storage, cleaned up and now just a few things left to do like replace all the smoke alarms and patch some holes in the walls, and then I'll be totally finished.
when i got here the rheumatologist was here and i forgot to ask him if he had talked to Dan Furst. He just seemed worried and asked me a few questions about the family. He had looked over Dad and i assume made some notes on the computer.
the dialysis machine is in the room and he has the process done 'as needed'. they drew some blood to see if he is really getting enough oxygen. they are going to put the tight face mask on later today to provide better oxygen.
He is very sleepy today, due to the pain meds they gave him according to nurse Mika. she said earlier today he was more awake, knew his name where he is and so forth. when he does wake up intermittently, he smiles.
when i got here the rheumatologist was here and i forgot to ask him if he had talked to Dan Furst. He just seemed worried and asked me a few questions about the family. He had looked over Dad and i assume made some notes on the computer.
the dialysis machine is in the room and he has the process done 'as needed'. they drew some blood to see if he is really getting enough oxygen. they are going to put the tight face mask on later today to provide better oxygen.
He is very sleepy today, due to the pain meds they gave him according to nurse Mika. she said earlier today he was more awake, knew his name where he is and so forth. when he does wake up intermittently, he smiles.
Not much specialized medical knowledge here, but I'll try to translate what I can of the cardiologist's note, to accompany scout's interpretation. It's hard to ignore the arrogance of doctors who won't supply a simple English explanation to family or to condone nurses who won't allow it copied, but Bill's needs come first so I won't waste time harping on that. Did Luisiri ever talk with Furst about the experimental scleroderma drug? If not, maybe one of Bill's other doctors can be persuaded to do so, as this sounds like something worth trying even if it doesn't help.
...heading to to the medical dictionary soon.... --Janet
...heading to to the medical dictionary soon.... --Janet
What continues to be maddening is that there is no one doctor (or other medical practitioner) who is translating all of this to the family and who is in Bill's corner, coordinating all that's happening and making sure that Bill is getting palliative care so that the illness is treated while he is made as comfortable as possible. Arlene
Sunday, April 10, 2011
Ok, here's is the verbatim note from cardiologist
The nurse let me read the cardiologist's notes from 4/7/11, the day after Bill was rescucitated. I took my computer to her computer and just copied it until she put a stop to it.
So here's verbatim notes from Dr. Watanabe:
"68 year old male with MGUS, sclerderma, complicated by ILD and Raynauds with dry bilateral hand gangrene initially admitted with increasing SOB, hospital course c/b anuric AKI requiring HD, multiple intubations for respiratory failure; G tube placement for dysphasia, now with asystole arrest (while on carvedilol) and bifascicular block and first degree AVB on EKG. The cause of patient's asytolic
arrest is unclear, it is possible that it may have been primary cardiac from worsening conduction disease, though this was exacerbated by giving carvedilol. Review of patient's telemetry strips show obitz block without higher degree AV block seen. At this time pt is a poor candidate for pacemaker placement given his overall poor prognosis from scleroderma as evidenced by multiorgan involvement and prolonged complicated hospital course. Recommend to stop coreg at this time and to avoid any AV nodal blocking agents. Continue ..." (this is where the nurse said no more copying).
Sobering..
Could anyone more savvy with medical language translate the above notes into plain English??
Weekend update
It's Sunday approaching 7pm. Bill is still at ICU: He is off the ventilator and is doing well breathing on his own. His lungs, however, are "wet", and he is receiving extra dialysis today to extract fluids. He has been hooked up to the dialysis machine since 4p and they are just just finishing up, having taken out 2.5 liters of fluids.
Bill is more alert and awake, but his voice is very coarse. It is hard to make sense of what he is saying... I did make out "Coca Cola". He was begging for it. He said he talked to his doctor who said it was ok. I had to tell him once again that it would go to his lungs. He didn't believe me. It is heart-wrenching.
When I tried to exercise his legs, I could hear the creaking noises from his joints. For the first time he could not extend out his right arm. It is too painful. His arm is contracting around his elbow. It is hard to watch the scleroderma doing its devilish work on his body.
I sneaked Sophie and Olivia in to say hello to their dad. Within minutes, the charge nurse came asking them to leave. The ICU is much more strict about visitor rules. My sister Sunny took them out on a walk and then to dinner, allowing me to spend some time with Bill.
There are no doctors during the weekend so I am not sure what the doctors have decided to do about installing an external pace maker. We will probably find out tomorrow. Today's nurse Vivian read me the notes from the docs but there was nothing remarkable except that they thought Bill too unstable to transfer out of ICU today.
Bill seems relatively comfortable and joked one time that when people are sick, they are cranky.
My mother and my cousin's family are due to visit in a few minutes.
Andrea Chung, one of Bill's favorite students, wrote me an email today from Hong Kong saying she was able to push her trip forward. She will be visiting 4/19-4/25. Bill is delighted at the news!
Kris
Friday, April 8, 2011
4/7/11 update
Saw Bill around 11.30am at the ICU (Shirley, new room # is 6330). Abby was already at the hospital. He was breathing on his own and was more awake and alert. Talked to Dr. Luisiri, Bill's rheumatologist, for about an hour. He was very emotional and said things like he felt depressed and guilty. He had not been visiting Bill as often as he wanted (about once a week), for a variety of reasons. He was contrite. He feels he let Bill down. Bill trusted him to a point of canceling his UCLA Scleroderma Center appointment in 2010 December. It has been a rude awakening for Luisiri that, in spite of his own very optimistic and confident prediction that Bill could be restored to 70% of pre-existing functioning level, he had taken a precipitous downturn.
Luisiri does not believe any experimental drugs will help Bill. Bill is too weak to try, he feels. He still promised to talk to Dr. Furst. Hopefully next week.
Abby said the doctors were debating whether to put a pace maker in Bill in order to prevent future problems with the heart.
As of 6pm, I heard that they were still debating...
Kris
Luisiri does not believe any experimental drugs will help Bill. Bill is too weak to try, he feels. He still promised to talk to Dr. Furst. Hopefully next week.
Abby said the doctors were debating whether to put a pace maker in Bill in order to prevent future problems with the heart.
As of 6pm, I heard that they were still debating...
Kris
Thursday, April 7, 2011
Big scare
Arlene here - Kris called well past midnight last night to say the hospital had called her and recommended that she come in. Bill's heartbeat had gotten slower and slower and finally stopped; he revived after CPR was administered. Abigail (who had been utterly exhausted and had fallen into a deep sleep for a short while) and I quickly dressed and sped off (in Bill's car which she has been driving) to the hospital. Was this "it"?
Bill was back in the ICU, intubated again. When we arrived he had just been given medication to enable him to sleep and was also being prepared for a lung x-ray. The ICU doc, a cardiologist whose 'day job' specialty is inserting pacemakers, reviewed what had happened and shared with us his thoughts on the reasons behind this latest incident. He said indicators such a potassium level had returned to normal very quickly and that Bill was now in stable condition. His conclusion, after he showed us the new and prior lung x-rays and previous cardiograms and helpfully reasoned out loud, was that the scleroderma probably had damaged the heart's electrical conduction system. He said a pacemaker would easily take care of this problem.
(What he said made sense but we have seen so many times that diagnosis and treatment recommendations seem to depend on the physician's specialty. Last summer an oncologist kept testing him based on the theory that he had a blood cancer - multiple myeloma - and Bill lost valuable time for treatments that might have helped calm the slceroderma. The cardiologists last February thought he had a badly leaking aortic valve and -- cardiomyopathy? -- and would need open heart surgery. The pulmonary specialist's theory was that interstitial fibrosis in the lungs resulted in insufficient oxygen and subsequent problems such as too much CO2 and delirium. As Kris said, "To a hammer, everything is a nail".) My own question is whether a pacemaker would enable Bill to have a period of time to enjoy life or would it prolong suffering.
We left the hospital around 3 am, arrived home wide awake at about 4. I'm retired and can move slowly today but Kris has work and childcare responsibilities, and today Abigail is visiting Bill at the hospital as well as sorting out his belongings that remain at the house, arranging change of address with Social Security etc., and getting a handle on his business affairs.
Bill was back in the ICU, intubated again. When we arrived he had just been given medication to enable him to sleep and was also being prepared for a lung x-ray. The ICU doc, a cardiologist whose 'day job' specialty is inserting pacemakers, reviewed what had happened and shared with us his thoughts on the reasons behind this latest incident. He said indicators such a potassium level had returned to normal very quickly and that Bill was now in stable condition. His conclusion, after he showed us the new and prior lung x-rays and previous cardiograms and helpfully reasoned out loud, was that the scleroderma probably had damaged the heart's electrical conduction system. He said a pacemaker would easily take care of this problem.
(What he said made sense but we have seen so many times that diagnosis and treatment recommendations seem to depend on the physician's specialty. Last summer an oncologist kept testing him based on the theory that he had a blood cancer - multiple myeloma - and Bill lost valuable time for treatments that might have helped calm the slceroderma. The cardiologists last February thought he had a badly leaking aortic valve and -- cardiomyopathy? -- and would need open heart surgery. The pulmonary specialist's theory was that interstitial fibrosis in the lungs resulted in insufficient oxygen and subsequent problems such as too much CO2 and delirium. As Kris said, "To a hammer, everything is a nail".) My own question is whether a pacemaker would enable Bill to have a period of time to enjoy life or would it prolong suffering.
We left the hospital around 3 am, arrived home wide awake at about 4. I'm retired and can move slowly today but Kris has work and childcare responsibilities, and today Abigail is visiting Bill at the hospital as well as sorting out his belongings that remain at the house, arranging change of address with Social Security etc., and getting a handle on his business affairs.
Wednesday, April 6, 2011
Visit 4/6/11
Spent pretty much entire day at the hospital with Bill. He was transferred out of the ICU late Tuesday evening and into a telemetry unit on the 7th floor (# 7784), several doors down from his old room. Since Bill is able to breathe on his own, the doctors apparently felt he was stable enough to be out of the ICU. The new room is pretty much like all the others, but a bit smaller with more wear and tear.
About 9am I received a call from Bill's new doctor, Joel Ramirez, and we met at 11.30am. He's a young doctor with a great bed side manner. His agenda: discharge goals. As far as they are concerned Bill's heart, lungs, and kidneys have achieved, more or less, maximum level of stabilization achievable at the hospital.
Bill was in a subdued state much of today. Didn't seem to have much pain but also was less engaged and less lively. He lost his speech again and his perceptual and mental confusion (i.e., mistaking sounds of vacuum cleaners as sounds of water rushing in, asking how he got where he was, etc.), was discouraging. On other hand, he correctly named Frank Lloyd Wright's house in view, as Hollyhock house, when I was confused about it.
We listened to one of Shelly's hypnosis tapes (about loving yourself, burying baggage) on the nice CD player Arlene had bought, and both of us kind of dozed at the end of it. We had a team of three nurses (Ric, Laura, and Matt, the main nurse, new nurse in the hospital, and a student nurse in training respectively). Ric was very good and had a light unassuming approach. At the end of the day, I walked over to the charge nurse asking Ric to be Bill's nurse again tomorrow. Wish granted, the charge nurse said.
The nurses brought in the cardiac chair and Bill was eager to be on it. We wheeled it in front of the large glass window. We looked at the Barnsdall Park trees, admired Hollyhock house, and talked about the weather. I read him pretty cards recently arrived from Betsy and a handmade card on a yellow cardstock paper with someone's beautiful, but unsigned handwriting. Bill's attention tended to ebb and flow; but he was intermittently persistent in wanting food. I admit I did something that might have made his hunger for real food much worse: Having had a stomach virus and therefore not having eaten anything previous day, I was very hungry and brought a bagle along to the hospital room. I caught Bill throwing a longing glance..
While Bill was able to sit in the cardiac chair for two hours (when I left he was still going strong), he still is unable to even shift any part of his body (save his left arm), much less getting in or out of the chair on his own.
I arranged a meeting with Dr. Phot Luisiri, Bill's rheumatologist tomorrow AM. I am concerned that he has not been much involved. I will urge him again to talk to Dr. Furst about experimental drugs.
By 4/10/11, Bill will be over his bacteremia completely and will no longer require visitors to wear gowns and gloves. This also means the nursing home of our choice would be more likely to take him on as a patient.
Abby will be back tomorrow.
Kris
About 9am I received a call from Bill's new doctor, Joel Ramirez, and we met at 11.30am. He's a young doctor with a great bed side manner. His agenda: discharge goals. As far as they are concerned Bill's heart, lungs, and kidneys have achieved, more or less, maximum level of stabilization achievable at the hospital.
Bill was in a subdued state much of today. Didn't seem to have much pain but also was less engaged and less lively. He lost his speech again and his perceptual and mental confusion (i.e., mistaking sounds of vacuum cleaners as sounds of water rushing in, asking how he got where he was, etc.), was discouraging. On other hand, he correctly named Frank Lloyd Wright's house in view, as Hollyhock house, when I was confused about it.
We listened to one of Shelly's hypnosis tapes (about loving yourself, burying baggage) on the nice CD player Arlene had bought, and both of us kind of dozed at the end of it. We had a team of three nurses (Ric, Laura, and Matt, the main nurse, new nurse in the hospital, and a student nurse in training respectively). Ric was very good and had a light unassuming approach. At the end of the day, I walked over to the charge nurse asking Ric to be Bill's nurse again tomorrow. Wish granted, the charge nurse said.
The nurses brought in the cardiac chair and Bill was eager to be on it. We wheeled it in front of the large glass window. We looked at the Barnsdall Park trees, admired Hollyhock house, and talked about the weather. I read him pretty cards recently arrived from Betsy and a handmade card on a yellow cardstock paper with someone's beautiful, but unsigned handwriting. Bill's attention tended to ebb and flow; but he was intermittently persistent in wanting food. I admit I did something that might have made his hunger for real food much worse: Having had a stomach virus and therefore not having eaten anything previous day, I was very hungry and brought a bagle along to the hospital room. I caught Bill throwing a longing glance..
While Bill was able to sit in the cardiac chair for two hours (when I left he was still going strong), he still is unable to even shift any part of his body (save his left arm), much less getting in or out of the chair on his own.
I arranged a meeting with Dr. Phot Luisiri, Bill's rheumatologist tomorrow AM. I am concerned that he has not been much involved. I will urge him again to talk to Dr. Furst about experimental drugs.
By 4/10/11, Bill will be over his bacteremia completely and will no longer require visitors to wear gowns and gloves. This also means the nursing home of our choice would be more likely to take him on as a patient.
Abby will be back tomorrow.
Kris
Tuesday, April 5, 2011
Abigail is busy
Arlene here - Abigail is feverishly packing Bill's things, getting ready for the movers tomorrow who will be taking his belongings to a storage unit in Claremont. She was too busy to go to the hospital today (Tuesday) and hoped others were able to visit. She reported that yesterday he was talking a lot and longing for some real food. He hasn't eaten by mouth since entering the hospital in late January and can't eat until his swallowing improves. Yesterday he was not fed (via stomach tube) for many hours because he was due for a small surgical procedure - a new shunt. The day before, Sunday, she said he talked a lot but often didn't make sense. But yesterday he was mentally present and able to carry on a sensible conversation. (I should mention that on Saturday he asked if he could start practicing sitting in the cardio chair again - a good sign - but I don't know if they brought the chair in after dialysis, which the nurse said could be done, - but perhaps he was too wiped out by then. Also, when reminded that Abigail was busy getting his things ready to be moved out of his house he expressed worry about his books and was reassured that they were all going into storage and were not being given away.)
Sunday, April 3, 2011
Some clear thinking
Arlene here - good to hear about Dr. Furst!
Yesterday, Bill was "present" and, for the most part, thinking clearly. For ex., when I mentioned getting Kaiser membership for Abigail now that she's no longer covered by Vermont's state health care program he said he wanted to be sure her coverage would be good, we were not to skimp. When asked whom we should talk to about restoring drawings and maps that had gotten moldy in his leaky garage, he immediately said, "Ask Judd" (Emerick). But -- he was feeling intermittent pain in his stomach/digestive tract even after getting some pain medication and needed to squeeze my hand while it occurred. He described it as torture and said he wanted to be "knocked out". Before leaving I left a message for his nurse saying he was intermittently in a lot of pain and that he understood that pain meds might have an undesirable effect but that his health care directive says he wanted to be kept comfortable and out of pain.
I got a small 'boom box' for his CDs, particularly the ones from the hypnotist he likes so much. As we talked about her, he described as "a miracle" the effects of talking to her before his bone marrow biopsy; the test was virtually painless. I hope the tapes will help him now.
Yesterday, Bill was "present" and, for the most part, thinking clearly. For ex., when I mentioned getting Kaiser membership for Abigail now that she's no longer covered by Vermont's state health care program he said he wanted to be sure her coverage would be good, we were not to skimp. When asked whom we should talk to about restoring drawings and maps that had gotten moldy in his leaky garage, he immediately said, "Ask Judd" (Emerick). But -- he was feeling intermittent pain in his stomach/digestive tract even after getting some pain medication and needed to squeeze my hand while it occurred. He described it as torture and said he wanted to be "knocked out". Before leaving I left a message for his nurse saying he was intermittently in a lot of pain and that he understood that pain meds might have an undesirable effect but that his health care directive says he wanted to be kept comfortable and out of pain.
I got a small 'boom box' for his CDs, particularly the ones from the hypnotist he likes so much. As we talked about her, he described as "a miracle" the effects of talking to her before his bone marrow biopsy; the test was virtually painless. I hope the tapes will help him now.
Just heard from Dan Furst
Wrote an email to Dr. Furst and got a surprisingly prompt response. As feared, Dr. Furst ruled out possibility of experimental study for Bill. He wanted to talk to Bill's rhuematologist, however, to recommend medications not yet approved by the FDA.
I will coordinate this on Monday...
Kris
I will coordinate this on Monday...
Kris
Saturday, April 2, 2011
Will follow up on the experimental clinical trials!
I read the posts from Eve and Janet and did some looking into it myself. I will definitely make a call first thing Monday morning. My two biggest concerns: 1. Bill's condition maybe too advanced for them to consider for inclusion. 2. Bill may not have the time to wait for a year or so that it takes to go from initial contact to actual drug/procedure trial (they have to run quite a bit of tests first). But it is worth looking into.
I am so glad Bill had the clarity to think of this possibility. Last December he had an appointment with UCLA scleroderma center but cancelled it when his Kaiser doctor confidently told him that he was making progress. Makes me feel a bit sick to think about this missed opportunity...
Kris
I am so glad Bill had the clarity to think of this possibility. Last December he had an appointment with UCLA scleroderma center but cancelled it when his Kaiser doctor confidently told him that he was making progress. Makes me feel a bit sick to think about this missed opportunity...
Kris
Here are some brief bios of Dr. Furst. The best part: Bill might like the fact that Furst did his MD, internship, and residency at Johns Hopkins!
http://www.uclahealth.org/body.cfm?id=479&action=detail&ref=4591
http://rheumatology.ucla.edu/body.cfm?id=27
--Janet
http://www.uclahealth.org/body.cfm?id=479&action=detail&ref=4591
http://rheumatology.ucla.edu/body.cfm?id=27
--Janet
Ventilator out, better mental clarity--What a relief! Looks like you have some good info from Eve, and here's another link for the UCLA scleroderma center, where Dr. Furst works: www.scleroderma.org/medical/centers_ca.shtm. It lists eight open trials going on right now, with two more opening soon. In addition to Daniel Furst, it is also run by MDs Philip Clements and Dinesh Khanna (dkhanna@mednet.UCLA.edu). Didn't see anyone named George. Phone number for UCLA's Scleroderma Center is 310-825-8414, and 310-825-4744. I'm so happy Bill's feeling better! --Janet
dan furst / research / support group
hey abby,
please say hello to bill for me!
I did some research, and here's the contact info for dr furst at ucla.
I also found this 2006 announcement for scleroderma study at ucla. The contact information (if still valid) is: (310) 206-4112 or (866) 909-SCOT or visit www.sclerodermatrial.org.
Here's the link to a more updated volunteer announcement by the scleroderma foundation. Looks like the closest research center is at the city of hope. They're doing stem cell research.
Contact: 1-866-909-SCOT or contact@sclerodermatrial.org. And if you go to this website, there's more information about the research, screening criteria, and risks/benefits. http://www.sclerodermatrial.org/patients/
Scleroderma Chapter / Support Group:
http://www.scleroderma.org/chapter/southerncal/index.htm
You might also find this website helpful. This is the southern california chapter for scleroderma. there are a number of support groups in the LA area, including one in Glendale.
please say hello to bill for me!
I did some research, and here's the contact info for dr furst at ucla.
Contact
(310) 825-2448 Information and referral
(310) 825-2448 Information and referral
Email Address
defurst@mednet.ucla.edu
defurst@mednet.ucla.edu
I also found this 2006 announcement for scleroderma study at ucla. The contact information (if still valid) is: (310) 206-4112 or (866) 909-SCOT or visit www.sclerodermatrial.org.
Here's the link to a more updated volunteer announcement by the scleroderma foundation. Looks like the closest research center is at the city of hope. They're doing stem cell research.
Contact: 1-866-909-SCOT or contact@sclerodermatrial.org. And if you go to this website, there's more information about the research, screening criteria, and risks/benefits. http://www.sclerodermatrial.org/patients/
Scleroderma Chapter / Support Group:
http://www.scleroderma.org/chapter/southerncal/index.htm
You might also find this website helpful. This is the southern california chapter for scleroderma. there are a number of support groups in the LA area, including one in Glendale.
Friday, April 1, 2011
research
Abby here,
so my Dad is talking now and he asked me to find a guy named George at UCLA who is doing research on scleroderma. Dad said he'd like to be a subject for this research. he also said we should write a book about scleroderma.
reminds me of a post from a while back:
Dan Furst, who is affiliated with the UCLA Scleroderma Center is considered the “guru” and west coast expert on the disease.
Here is one useful link:
http://www.scleroderma.org/medical/r&t_articles/Furst_2001.shtm
how do i go about contacting with Dan Furst or 'George' at UCLA?
so my Dad is talking now and he asked me to find a guy named George at UCLA who is doing research on scleroderma. Dad said he'd like to be a subject for this research. he also said we should write a book about scleroderma.
reminds me of a post from a while back:
Dan Furst, who is affiliated with the UCLA Scleroderma Center is considered the “guru” and west coast expert on the disease.
Here is one useful link:
http://www.scleroderma.org/medical/r&t_articles/Furst_2001.shtm
how do i go about contacting with Dan Furst or 'George' at UCLA?
vent is out!!! yea!
ab here,
Dad is wide awake and really seems to understand whats going on. Dr Bronstein said he really thinks they gave him too much sedation and had too much CO2 in his system in the other unit and that landed him back in the ICU. He is going to try and take out the vent today. Dad is actually breathing with his own power, but with the vent in.
OK, they just took the vent out.. and he is getting a breathing treatment and is breathing on his own. he has a lot of secretions they are suctioning it out and watching him. what a relief it must be to get that huge tube out of the throat and lungs! the tube looks frightening to me, goes way way down. they took the mittens off. freedom! Dr. Bronstein also said he can start with the ice chips again when he wants them to soothe his throat.
we are listening to talking heads and he's trying to talk a little.
Dad is wide awake and really seems to understand whats going on. Dr Bronstein said he really thinks they gave him too much sedation and had too much CO2 in his system in the other unit and that landed him back in the ICU. He is going to try and take out the vent today. Dad is actually breathing with his own power, but with the vent in.
OK, they just took the vent out.. and he is getting a breathing treatment and is breathing on his own. he has a lot of secretions they are suctioning it out and watching him. what a relief it must be to get that huge tube out of the throat and lungs! the tube looks frightening to me, goes way way down. they took the mittens off. freedom! Dr. Bronstein also said he can start with the ice chips again when he wants them to soothe his throat.
we are listening to talking heads and he's trying to talk a little.
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