Coca cola

Bill was awake and alert when I walked into the room this evening. He has been off the ventilator since Saturday and especially today has been breathing on his own very comfortably. I don't know if he recognized me or not, but the first thing he said in response to my "hello" was "Coca cola". He failed swallow test today, which means that he is prohibited from eating or drinking normally for the 10th day. He has been getting fluids and food through nasal tube. I am sure it doesn't taste nearly as good or sweet as Coca cola.

I am so grateful to Abigail who is keeping Bill her dad company. She said the other day offhandedly that she and Bill shared a brain. I think she meant to suggest that she feels very intimately close to him. I can feel her love and affection for her dad.

My kids, Sophie and Olivia get updates on how their dad is doing. They wanted to visit him at the hospital but they are too young to do so. They asked what they were doing to him at the hospital. I told them doctors and nurses were helping him to get better. I told them their dad had a really cool bed that could go up and down and tilt side to side. They got a kick out of that. They sense that adults are worried about their dad. Sophie said she was worried too. I said people were worried because they all cared about him. They made Bill get well cards and sent him paintings they made.

hi this is Abigail. I'm here and the cardiologist stopped by

 and said that Dad is improving slowly. it seems he has a bit of fluid in his lungs, so they are monitoring that. the doctors are so young here!
so far i have been very impressed and the teams working on him are great.

we called the nurse. she says he is calm w/out Adivan this morning, kidneys are gradually going down in numbers and that is good news. breathing on own with out tubes. night nurse said he moaned the whole night, but asked if he is in pain or discomfort he shook his head 'no'.
throat docs later today will see if he can swallow and will figure out a process to get his voice back.
has his music on and is enjoying listening. Arlene brought a book 'the sound of a wild snail eating'. i will be reading it to him today around 1pm. i made a pit stop last night on the way to Claremont  to the animal kingdom he has set up in his home in Glendale. i cleaned up the room a bit, fed and watered everyone. his snails immediately crept over to the fresh lettuce and raised their heads. dont worry, this snail is an image i found when googling 'giant Ghana snail'. he has the garden variety.

Message From Debby

I visited Bill Saturday evening and was cheered by seeing he was off the ventilator. He tries to talk now but it is difficult to understand him and it is frustrating for both of us. As his throat heals, I think his speech will become more intelligible. Yesterday he had a face mask for oxygen  which annoyed him. This too has been removed and he now has only small tubes for his nostrils.   As he becomes more cognizant, he also seems to be more anxious, as Abigail has described. But Abigail has a wonderful way with him and seems to soothe him as does the music that she brought. She is so patient and her wonderful sense of humor really lifts spirits.  Bill’s room is also more cheerful with very cute pictures of Olivia and Sophie on the wall where he can see them and the delightful get well cards they drew.

Bill still has his sense of humor. There is a screen in the room which shows beautiful pictures of nature. There was one of a huge waterfall and Bill and I both smiled when it appeared.  I said- Just like your waterfall demo, right?  He nodded.  Al Yeck and Bill concocted a demonstration of motion aftereffects with a device that rapidly moved painted horizontal stripes in a downward motion. After 30 seconds or so of staring at the stripes, you move your eyes to a picture of a huge waterfall next to the stripes. The water in the waterfall appears to rapidly flow upwards. This never fails to elicit yelps of surprise from students and is a very imaginative way of demonstrating a fundamental property of perception- the effects of neuronal fatigue of specific motion detectors. Bill with characteristic generosity let me use this for my classes and explained the phenomenon to me so I did not sound like an idiot.

One more thing we can do to help

Bill is very good at using hypnosis - he reports later that he didn't feel he was in an altered state, but I have noticed that it helps him to put pain aside. I'm sure that hearing music he enjoys or hearing a book you read to him helps him the same way. It 's like bedtime story telling - by concentrating on a scene that is important to him - he feels transported. Perhaps you'll enjoy talking to him about a fun time you had together, or about seeing his child's smiling face and feeling a hug about his neck. When you include all the senses - sights, sounds, smells- the picture in his mind will be more vivid and more effective. It is very easy to be kind to Bill, he is so appreciative.

Hi all,
I am thinking of taking another quick Southwest trip down. Wednesday, Friday, or Saturday, or Sunday. Is there a preference? You can e mail me off blog ( wprinz@ berkeley.edu )
Thank you, Prinzmetal

11am: he is calm and relaxing with out the Adivan. still confused but not as frightened. in and out of understanding. i don't want to leave yet. i think it helps to see people he knows. he wants to know when he can leave. it is unknown so i tell him about his progress. breathing well, kidneys moving fluid and toxins out a bit more, lungs sounding better, heart stable for now.
a specialist will see if he can swallow water and will examine his throat and voice tomorrow.
he was adjusted about a half hour ago and stretched out a bit and it really helped. he likes being proped up fairly high. they removed the arm restraints. still enjoying the radio.

as of 9 am sunday the 30th the doctors say his kidneys are improving slowly, but improving none the less.

 last night he did not sleep very much. his heart was irregular and they did an ekg test to check it. they gave him a heart medicine to stabilize the rhythm and its been stable for hours now.
he has been moaning and groaning constantly and it maybe from constant discomfort and frustration. he is very confused and has asked where he is several times. he's awake and aware but very anxious. he was frightened panicking last night and they gave him Adivan to lighten the anxiousness.
besides these issues, i am optimistic and think he's getting stronger.

third shift

 News tonight is in the realm of positive progress. he is off the face air mask and just has an exterior oxygen tube and a nutrition tube in his nose. he can open and close his mouth. he's doing better. coughing is good. he'll be able to talk in a few days according to the nurse. less agonizing all over pain.  he's about where he is confused and needs things repeated.

figured out the lemon flavored sponges become neutral when rinsed out. i give him small amounts of water with it. the night nurse Jill, is really great and was even able to understand what was so bothering him (his throat) and got a throat spray prescribed, and alleviated some pain. another nurse is monitoring his lungs and clearing his mouth and throat with a suctioning device approx. every 4 hours  or otherwise as needed. his first sip of water will be fantastic.
he is getting a good amount of oxygen into his blood. the blisters on his left hand are still very pronounced, but the skin is softer to the touch. not as taught.

judd and debby

    Judd contemplating  L. Ron Hubbard (the church of scientology  is visible from the  ICU window)

from abigail

hi everyone,
a great big step!!
very GOOD news as of 5pm saturday jan 29th. they removed that damn uncomfortable/painful air ventilator and he is breathing on his own with help of an air mask!
Judd Emerick was here & Steve Meukow  (a good friend of josh, dad and kris) & Kris was here when i arrived. it was really great to see them all.
they will feed him through a tube in an hour. no food by mouth. he desperately wants water, but can't give it to him yet, only the small sponges with just a tad of water. i am trying to find a sponge that is neutral flavored, not lemon.  choking on water is still a concern at this point.
 he can mouth words but his voice is faint and horse, but its much better than the dang tube. we have been listening and enjoying one of his previously selected radio stations, 91.5, classical 24/ 7 /365. He loves music so much.
Debby is here now.
ok, i'll update any new news tonight.

Update as of Sat 1/29 am

Hi, everyone,
I am at the hospital this morning. Bill's condition is basically status quo for the last couple of days. His cardiologist, Dr. Sachdea (I can't get over how young he is! He must be at least in his early 30's but he looks as if he is 19), says that the priority now is to get Bill off the ventilator and to stabilize his kidney functions.

Josh's friend Steve came to visit. He is reading a book to Bill (The last of the Mohicans by James Fenimore Cooper) and Bill seems to really like it. Visitors can take turn reading it. Please feel free to bring books that you think Bill may enjoy. Thank you Josh for letting Steve know.

As of 1.15p, his respiratory therapist took him off ventilator to test his ability to breathe on his own. Yesterday he did this for 30 minutes. Today the goal is an hour.

His scleroderma has wrecked a havoc on his left finger tips. He has huge dark blisters in all his fingers except thumb. They look as if from horror films. There were some concerns that Bill may lose his finger tips. His rheumatologist called a hand surgeon to see if an injection to numb the nerves to the finger tips would help. The hand surgeon rejected this idea and they are back to just keeping his hands/fingers warm with warm compresses. They do not want to pop the blisters since doing so might cause infections.

I will leave around 2.30pm to relieve my nanny. I will have the kids the rest of the afternoon and the evening. His colleague Debby will come by soon as is Abigail. Abigail has been terrific and her presence comforts Bill.

from Sandy

(friday) Went and saw your dad today. It was Jessie, Al and myself. He was awake for most of our visit, and he had a lot of visits from doctors and such while we were there. He seemed to be pretty understanding of what we were saying.

from Arlene

Leah, Abigail, and Arlene were with Bill this afternoon (Friday). Bill was alert and able to interact by nodding and shaking his head. Abigail found Bill's ipod at his house earlier in the day and played some Bob Dylan and rock in the afternoon, switching to Mahler in the early evening. Leah left around 4, just in time for Friday traffic. He liked hearing the music, but it was not enough to override the tremendous pain and anxiety he is apparently feeling. His left hand fingertips are like balloons, completely gray, almost unrecognizable.  It is so difficult to see him try to communicate.  He was finally given pain medication; the hesitation to administer it is because too much medication results in delay of removal of the breathing tube.  But it was just too much for him to bear. 

His kidney function still needs to improve; the cardiologist said breathing and kidneys need to stabilize before they start dealing with the heart problem - a leaky aortic valve. It has been a difficult day. Abigail has been holding his hand for hours. It comforts him.

Thurday Visit Eve Isham and Bill Prinzmetal

Eve Isham and I visited Bill yesterday. I definitely know that he recognized Eve when she walked in. His eyes lite up and he followed her with his eyes. Bill always had most excellent taste in women. For part of the day he was responsive, and he even tried to laugh at on of my jokes. I said, "Bill, you are just listening and later you are going to say, 'Prinzmetal, how could you say such a stupid things!" ' Do you know that grim has just before he laughs? Some of the rest of the afternoon he was less responsive, but then the doctor came and told gave him verbal commands (look left, look right) we was spot on. He could answer questions with nobs.

I was one of Bill's first graduate students, more than 40 years ago and Eve was his most recent. We both care for him with our own passion.

It is heart breaking to see Bill with less of the vigor that I have know him with for more than 40 years. He is surrounded by wonderful people, Kris, Arlene, Abby, and everyone from Pomona.
Bill Prinzmetal

From the Mayo Clinic Website

Scleroderma (skleer-oh-DUR-muh) is a group of rare, progressive diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.
Localized scleroderma affects only the skin. Systemic scleroderma also harms internal organs, such as the heart, lungs, kidneys and digestive tract.
Scleroderma can happen to anyone at any time in any geographical area. However, the disease affects women more often than men and most commonly occurs between the ages of 30 and 50. Scleroderma can run in families, but in most cases it occurs without any known family tendency for the disease. Scleroderma isn't considered contagious, but it can greatly affect self-esteem and the ability to accomplish everyday tasks.
Scleroderma symptoms vary, depending on which organ systems are involved. Diagnosis can be difficult because some of the early symptoms are common in the general population and aren't always associated with scleroderma. The most prevalent signs and symptoms of scleroderma include:
    •    Raynaud's phenomenon. An exaggerated response to cold temperatures or emotional distress, this condition constricts the small blood vessels in the hands and feet and causes numbness, pain or color changes in the fingers or toes.
    •    Gastroesophageal reflux disease (GERD). In addition to acid reflux, which can damage the section of esophagus nearest your stomach, you may also have problems absorbing nutrients if your intestinal muscles aren't moving food properly through your intestines.
    •    Skin changes. These changes may include swollen fingers and hands; thickened patches of skin, particularly on the fingers; and tight skin around the hands, face or mouth. Skin can appear shiny because it's so tight, and movement of the affected area may be restricted.
Localized scleroderma
The two main varieties of localized scleroderma, which affects only the skin, are distinguished by very distinctive signs and symptoms:
    •    Morphea. This variety features oval-shaped thickened patches of skin that are white in the middle, with a purple border. Skin patches could appear in only a few spots on your body or be more widespread, appearing all over your body. Morphea generally fades out after three to five years, but you may retain areas of darkened skin where the areas of thickened skin appeared.
    •    Linear scleroderma. This variety, which is more common in children, features bands or streaks of hardened skin on one or both arms or legs, or on the forehead. Linear scleroderma often appears mostly on one side of the body.
With localized scleroderma, the first signs of disease may be the presence of Raynaud's phenomenon and may develop several years before you notice any other symptoms.
Systemic scleroderma
This type of scleroderma, also called systemic sclerosis, affects not only your skin but also your blood vessels and internal organs. Subcategories are defined by what portions of your body are affected. One variation is known as limited scleroderma, or CREST syndrome.
With systemic scleroderma, skin changes may occur suddenly and progressively worsen during the first one to two years of the disease. After that, changes level off or subside, and sometimes even resolve on their own without treatment.
Scleroderma results from an overproduction and accumulation of collagen in body tissues. Collagen is a fibrous type of protein that makes up your body's connective tissues, including your skin.
Although doctors aren't sure what prompts this abnormal collagen production, the body's immune system appears to play a role. For unknown reasons, the immune system turns against the body, producing inflammation and the overproduction of collagen.
Race and ethnicity
Certain groups of people are more likely to develop scleroderma than are others:
    •    Native Americans. Choctaw Native Americans in Oklahoma are at least 20 times as likely as is the general population to develop systemic scleroderma. Oddly enough, this increased risk doesn't apply to Choctaws living in Mississippi.
    •    African-Americans. Systemic scleroderma is more common in African-Americans than it is in Americans of European descent. And the African-Americans who have systemic scleroderma are more likely to develop severe lung complications.
Gender
Scleroderma occurs at least four times as often in women as it does in men.
Environmental factors
Exposure to a variety of substances may be linked to the development of scleroderma. Examples include:
    •    Silica dust, which is common in coal mines and rock quarries
    •    Some industrial solvents, such as paint thinners
    •    Certain chemotherapy drugs
Scleroderma complications range from mild to severe. Some may even become life-threatening.
Circulatory complications
The variety of Raynaud's phenomenon that occurs with scleroderma can be so severe that the restricted blood flow permanently damages the tissue at the fingertips, causing pits or skin sores (ulcers). In some cases, gangrene and amputation may follow.
Lung complications
Scarring of lung tissue (pulmonary fibrosis) can result in reduced lung function, reduced ability to breathe and reduced tolerance for exercise. You may also develop high blood pressure in the arteries to your lungs (pulmonary hypertension).
Kidney complications
When scleroderma affects your kidneys, you can develop an elevated blood pressure and an increased level of protein in your urine. More serious effects of kidney complications may include renal crisis, which involves a sudden increase in blood pressure and rapid kidney failure.
Heart complications
Scarring of heart tissue increases your risk of abnormal heartbeats (arrhythmias) and congestive heart failure, and can cause inflammation of the membranous sac surrounding your heart (pericarditis).
Dental complications
Severe tightening of facial skin can cause your mouth to become smaller and narrower, which may make it hard to brush your teeth or to even have them professionally cleaned. People who have scleroderma often don't produce normal amounts of saliva, so the risk of decay increases even more. In addition, acid reflux can destroy tooth enamel, and changes in gum tissue may cause your teeth to become loose or even fall out.
Digestive complications
Scleroderma can affect your upper and lower digestive tracts. Digestive problems associated with scleroderma can lead to acid reflux and difficulty swallowing — some describe feeling as if food gets stuck midway down the esophagus — as well as bouts of constipation alternating with episodes of diarrhea.
Sexual complications
Men who have scleroderma often experience erectile dysfunction. Scleroderma may also affect the sexual function of women, by decreasing sexual lubrication and constricting the vaginal opening
Scleroderma has no known cure — no drug will stop the overproduction of collagen. But the localized variety of scleroderma sometimes resolves on its own. And a variety of medications can help control the symptoms of scleroderma or help prevent complications.
Medications
    •    Dilating the blood vessels. Blood pressure medications that dilate blood vessels may help prevent lung and kidney problems and may help treat Raynaud's disease.
    •    Suppressing the immune system. Drugs that suppress the immune system, such as those taken after organ transplants, may help reduce scleroderma symptoms.
Therapy
    •    Physical or occupational therapy. Therapists can help you to manage pain, improve your strength and mobility, and work on performing essential daily tasks to maintain your independence.
    •    Cosmetic procedures. The appearance of skin lesions associated with scleroderma may be helped by exposure to ultraviolet light. Laser surgery also may help camouflage or eliminate these lesions.
Surgery
    •    Amputation. If finger ulcers caused by severe Raynaud's disease have developed gangrene, amputation may be necessary.
    •    Lung transplants. People who have developed high blood pressure in the arteries to their lungs (pulmonary hypertension) may be candidates for lung transplants.
You can take a number of steps to help manage your symptoms of scleroderma:
    •    Stay active. Exercise keeps your body flexible, improves circulation and relieves stiffness. Range-of-motion exercises can help keep your skin and joints flexible.
    •    Don't smoke. Nicotine causes blood vessels to contract, making Raynaud's phenomenon worse. Smoking can also cause permanent narrowing of your blood vessels. Quitting smoking is difficult — ask your doctor for help.
    •    Manage heartburn. Avoid foods that give you heartburn or gas. Also avoid late-night meals. Elevate the head of your bed to keep stomach acid from backing up into your esophagus (reflux) as you sleep. Antacids may help relieve symptoms.
    •    Protect yourself from the cold. Wear warm mittens for protection anytime your hands are exposed to cold — even when you reach into a freezer. When you're outside in the cold, cover your face and head and wear layers of warm clothing.
    •   
Meditation and relaxation techniques can help you cope with the frustrations of scleroderma, and help relieve pain and fatigue.

As is true with other chronic diseases, living with scleroderma can place you on a roller coaster of emotions. Here are some suggestions to help you even out the ups and downs:
    •    Maintain normal daily activities as best you can.
    •    Pace yourself and be sure to get the rest that you need.
    •    Stay connected with friends and family.
    •    Continue to pursue hobbies that you enjoy and are able to do.
If scleroderma makes it difficult for you to do things you enjoy, ask your doctor about ways to get around the obstacles.
Keep in mind that your physical health can have a direct impact on your mental health. Denial, anger and frustration are common with chronic illnesses.
At times, you may need additional tools to deal with your emotions. Professionals, such as therapists or behavior psychologists, may be able to help you put things in perspective. They can also help you develop coping skills, including relaxation techniques.
Joining a support group, where you can share experiences and feelings with other people, is often a good approach. Ask your doctor what support groups are available in your community

from Kris Yi

But GREAT NEWS:  Bill is now much more responsive (he can smile and nod) and his brain CT scan is NEGATIVE!!  They were worried that he had a brain accident.  But now they think he is just wiped out because of his kidney failure.  They also said the kidney failure might have been due to overcorrection of the lung fluid problems (The medicine they gave him took too much water out of his body making it impossible for his kidneys to function normally).  They are trying to correct this by giving him fluids intravenously.

I think everyone's visit really made a difference.  I think it was treat for him to see so many of his colleagues, friends, family, and former students...

I am thinking today he will make it out of this..

from Julianne Flora-Tostado

I took Bill's Perception and Cognition class in 1974..( I gave your Mom and Dad your first baby present -- a little silver spoon).  My older son took Bill's Perception and Cognition class in 2002.. Bill had added so much that I wished I could go back to college!  Your dad's my favorite professor  - always engaging, interested, curious and encouraging!

 

1/25/2011

Welcome to all of Bill's friends. At this blogspot we can share our updates, thoughts and suggestions about Bill. As each of you has contact with Bill, please post your response here so we all know what to expect. I much prefer tracking Bill's condition via your first-hand comments.

Thanks to Bill Prinzmetal for setting this up with me and for all of you for continuing the posts.

Kathy Pezdek