send positive feelings. he said to me yesterday he can't do this alone. imagine yourself in the same situation. what do you need from friends and family? that's the answer.

Sunday visit

Arrived around 11.30am to give Abigail much much needed break.

Bill was drifting in and out of sleep. His Filipino nurse Carol is very nice and gentle. He actually did not look as emaciated as he was on Friday night, which was a relief. Doctors notes said that Bill's bacteremia is still present; he will have to be on antibiotics for a while.

When awake, Bill is very weak. He could only swallow one ice chip before giving up. It seemed too hard to muster up the energy to even do that. He asked for foot massage. He's been complaining of cramps in his feet and legs. I just hope this does not mean an onset of some new problem!

I am off to taking Sophie and Olivia for roller skating in about thirty minutes. Will be back around 6p with the girls.

Ab here, I Ended up staying over at the hospital. i was too tired to leave. pretty soon they are going to mistake me for a patient and hook me up to a machine!
so physical therapy was on hold because he was not making progress. they have been checking in but not practicing sitting up. dr McKinley said i can go ahead and practice with him, and that PT has only a short amount of time with him here.

Japanese art

Hi Abigail,

Since Bill's a fan of Hiroshige, I thought he might enjoy seeing some of these images.
Please let him know my husband and I are thinking of him. I wish I could visit!

Hi Abigail here,

Time for me to go back to Claremont and sleep. I have been here since Thursday and I am very tired. The physical therapist never showed up today, i asked the doc on duty and she said she would put the order in, and many hours later I asked the nurse and she said the order was not put in. ugg. hurry up and wait.
I can do some PT with him (and did today), but i cannot get him sitting up or in a cardiac chair. while i was in Vermont did physical therapy come visit? i wonder if they stopped visits because of the infection? is it possible its on hold until the infection clears up?
We did ice chips and he swallowed the water. It takes a bit of effort. He's better at it now than when i left!
I also have not been stopping by Dads house and checking the animals since I have been back (I got back Wednesday) just slipped my mind until tonight when dad said he wished he had his rats here. is anyone going to take care of them? anyone going to take them home? I'll go over there tomorrow and check on them.
he's up to 45 ml food per hour now. dialysis Monday and then they will up tick his protein and calories.

let's hope he is not exposed to any germs. let's hope he does not get re-infected.
we watched
'Play it again Sam'
and 'the hudsucker proxy'
We are going to watch the Oscars tomorrow. The only nominated film we both have seen is the Bansky film 'exit through the gift shop'.

Talking to Dabney--- he suggests we need a case manger or hospitalist or patient manger/ tracker to take all the info we get and make sense of it. let's ask the ombudsman. have no medical experience and i can be here for dad as his support but the larger picture and med info might be better coming from a pro.
thoughts/comments on this?
Ab

Physical therapist will be here today, ice chips on the way and i cleaned his mouth really well.
Ab

Hello, its 9:30 am Abby here. They have slowly upped his feeding from 10 ml per hour to 40 ml per hour over night. He's awake now but his throat hurts from yesterday's heart examination. He's slowed down today/little bit confused, the dialysis on Monday will probably help with that. Kidney doctor said his toxin levels are OK for now, but they are keeping a close watch and judging his dialysis needs by his blood samples. Kidney doc hopes to wait until Monday because the more time without the catheter port for dialysis  the more chance for the infection to clear up. hope they can make a safer port for future dialysis.
He asked to watch the film ' Shoot the piano player' today, so i'm going to see if my nextflix has it on insta play. Today i am going to try to get  the physical therapist in here. Wonder why they have not been here for a few days?
We did some leg stretching and hand and finger stretching this morning. We'll practice with ice chips this afternoon.
They really got alot of answers to us yesterday.

Tonight's visit

I brought Sophie and Olivia to see Bill this evening. They had been looking forward to it the whole week. Dr. McKinney had ok'ed their visit, provided that they donned gown, gloves, and masks. They loved putting these on and looked very cute in them! But Bill was in and out of sedation. He managed a weak smile or two at the kids. But the effects of nearly 48 hours worth of starvation was visible: he was even more gaunt and was too tired for any meaningful contact with the kids. Abigail said that a nurse in training might have been responsible in blocking the G-tube leading to feeding stoppage. I can't believe they'd have nurse in training to practice on such gravely ill patients. Hopefully on Monday we can get a meeting arranged with ombudswoman to get a better answer on his dramatic weight loss and the problem with constantly changing staff.

My sister Sunny dropped by on her way back from work. She loves Bill and has been a frequent visitor at the hospital. I am grateful to her!

Kris

getting food and water again, finally.

Abby here-
Nurse started the feeding tube up again very slowly at 10 ml an hour, at 8:30 pm from doctors orders. they will up the amount gradually.

Abby here-
Doctor and nurses finished the heart imaging ordeal tonight-- dad is still a little sedated.
The doctor said nothing was found this time but in a week or two they will do this imaging again to see if there is an infection around his heart. If the blood infection subsides they will of course not re-do this type of imaging. (the blood infection might not be in his heart.. am i being clear enough?)
His heart might be under stress because of EVERYTHING. Stressed Organs. If its stress, time can heal that. Proper nutrition and all other support, including blood pressure medication and love, can help.
Lets HOPE he does not develop an infection in or around his heart. infection around or in the heart means they would have to do surgery and he is already very weak.
They will resume feeding either tonight at 8pm or early in the morning. I heard both. We'll see. They will do dialysis on Monday (unless it becomes an emergency) and after the dialysis they will up his protein. He needs dialysis to tolerate more protein. All things are balancing each other and they are just taking it slow. if he does not have dialysis, he fills up with fluids and toxins and cannot tolerate much food or water. it will go into his lungs and heart.
They think the tube was clogged because some of his meds were not crushed up enough. ugh. At least its nothing biological interfering. Unless one considers an inexperienced nurse biological interference...

Got your Letters!!

Thanks so much for the kind and awesome letters!!

Bill Prinzmetal-- Sweet wool mittens! he put them on, likes them, does not feel imprisoned by them! did you knit them yourself? jk!
Hedy White- the DVD's :' Casa Blanca', and the Woody Allen mock of the Bogart, Bergman classic ; 'Play it again Sam'. all in good taste! ha! we have not had the attention span for full length films yet, but its in the works. i am a huge Woody Allen fan. Hope Dad is too!

Betsy & Greg-- so i learned today that your dog molly reads? totally a Banks clan dog. unfortunately, my dog biscuit was dyslexic, like me. Does molly know anything about Nephrology?maybe she can make sense of his kidney stats for us.

Mac, William, Fitz-- looks like you guys are enjoying Lake Tahoe ! Cant wait to see you all. i think i have not seen Fitz since he was 3 years old or 4 and William since i was like 6 years old! we are all probably much taller and can totally speak in full sentences now. sweet.
Shirley-- nice letter. i'm putting it in the archives. that pencil rendering of a bird is priceless. you know what i'm talking about!

OK-- many other letters and even a balloon from Janet... we still have it in the room, its still has helium. Although i am temped to mickey mouse my voice with it and freak out the speech therapist. will resist the temptation.
Sorry sorry if i did not mention your letter!! we have gotten a ton!! very awesome. this was reflecting the last 2 days. I'll update as i have some time outside of medical info....
THANK YOU ALL!!! positive-- healing--- funny-- helpful--- mindful ---->yes!

Abigail here-

they just did the gastro graph/x-ray. waiting for results.

doctors in the room right now doing the heart pictures through his mouth. lots of nurses an one doctor in the room. I had to leave the room. not the best sounds coming from the room. i think it's very uncomfortable.
 we will see if he has an infection near, on, in his heart after this test is done.  well, we might have to wait for analysis of the images.

after noon update--
1) kidneys:
waiting for dialysis-- they are waiting until its very needed because of the blood infection- they are hesitant to add a line in because it might cause a longer wait on the infection. might re-infect him. so they will wait until they absolutely have to. most likely  to happen on Monday.
2) G-tube/feeding:
Gastro graph and x-ray. they will add ink to his g-tube into his stomach and take an x-ray. this will determine if he can have food/water. if its blocked they will give him a nose feed again. hopefully today
3)Heart:
they give him something so he will doze and put a tiny camera type device down his throat and make some more images of his heart. the images they took yesterday did not get the whole picture (ribs and angle), they are looking to see if he has any infection near his heart and will use this information to understand his over all health.  most likely Monday also.
4)Physical therapist:
Doctor is calling to see if they can get up here today. I have been moving his fingers/hands today. he's been napping alot today (said he did not sleep well last night) and not complaining too much about pain/discomfort.

Doctors hope his G-tube is clear, heart has no infection and hope his blood infection clears in the next week. I feel very optimistic and so does the doctor.

Friday the 25th

Abigail's internet is down - this is Arlene - The g-tube was tested with saline and the saline went right through, so either it became unblocked somehow or the person who determined it was blocked was incorrect.  The g-tube will be hooked up again, we hope very soon.  A small suture was broken and will be fixed.  He will have another dialysis treatment today or tomorrow.  That's all for now.
...Abigail here, back online. they gave him a bigger g-tube cleaned up the area and now we are waiting for an x-ray to see if it's really cleared to be hooked back up to food/water. They will do dialysis treatment either today or tomorrow, depending on space and timing.

Cathy Parker is Kaiser's Ombudsman

Oh, dear, I hope I haven't over-stepped. I saw your message, Kris, asking who's the boss of the doctors and nurses, and thought an ombudsman could help. So I just now telephoned Kaiser to get the name and phone number of the ombudsman at Bill's hospital. Hound-dog that I am, I persisted through various transfers, asking only for this person's name and number each time. I thought I could give it to all of you in case you wanted to contact someone who might be able to help with this coordination of care issue.

Well, suddenly there I was talking with the ombudsman herself, who asked many questions. Her name is Cathy Parker, and she is going to go up to Bill's room to look for Abby, and she will also telephone Kris (assuming the phone number I have is still correct). She was surprised that I had found her, given that I'm not a Kaiser member, but seemed very nice and willing to help once I explained that I was just a friend. I mentioned that Bill had lost 40 pounds, but stressed repeatedly that I did not feel the family wished to lodge any sort of complaint, but just wanted to get Bill the best possible care. I also emphasized that none of you suggested I call. I told her that I was just concerned for my friend and that it might help if his family had a clearer idea of who exactly should be coordinating among the various specialists. The whole conversation was very easy and nice. She said she understood and would check into the situation and try to be of help to you.

I'm really sorry if I went too far on this one...     Janet

Here are some general tidbits. Remember, I'm not a medical expert, but maybe this info will provide a base from which to ask more questions. It's from PubMed database, Merck Manual of Medical Information, and Mayo Clinic.

Weight Loss is linked with kidney disease, scleroderma, dialysis, and certain prescription drugs that interfere with absorption of nutrients, so Bill could be losing weight for any or all of these reasons. Merck recommends 5000 calories a day to increase weight after malnourishment. This amount must be reached gradually because the intestinal tract shrinks during weight loss and will not tolerate many calories at first. If the tube feeding isn't providing adequate nourishment, and clearly it's not, then IV feeding may be added through a large vein (usually under the collarbone). It might help to ask what Dr. Kohlberg's long-term plan is for weight gain or to suggest IV feeding and continued calorie increase. I like Betsy's idea of talking with a registered dietitian, too.

Standard intake for a normal sedentary man is about 2000 calories a day, but this varies dramatically depending on a given person's metabolism. Bill's body is accustomed to exercise and is fighting severe illness--both would suggest that he needs more than 2000 per day just to maintain his weight. Certain vitamins must be supplemented for a person with kidney problems, so it's important that the standard tube feeding solutions ("total parenteral nutrition solutions") are modified for a kidney patient. Merck emphasizes that everyone on dialysis (even those with normal outpatient lives) should be weighed daily.

Tube Feeding can be done at home if necessary. Some hospitals (e.g., Mayo, but probably several in LA too) train family members how to feed a patient through stomach tubes at home. With a doctor's prescription, Medicare also provides physical therapists, home health aides, and nurses that visit patients at home. I know Bill isn't ready to come home yet, but it might become important in the future.

Infection from Dialysis "is a constant risk" for two reasons: 1) the catheter is in place for a long time, and 2) the feeding solution contains glucose, in which bacteria grow easily. Bill has added vulnerability because of the drugs that suppress his immune system.

Outside Care Management sometimes helps various specialists coordinate with each other, but I have reservations: cost, interference, quality, managers trying to take over. (It's important to keep ultimate authority in your hands--Kris, Arlene, Abby--and not let any care manager take over Bill's medical decisions.) Inside care management would be better--someone from Kaiser to organize test results and care plans. Bill's social worker at Kaiser or his primary care physician from before hospitalization should be able to say who is supposed to provide consistent medical supervision for a coordinated team effort. If they can't, or if that person won't talk with you, Kaiser should have an ombudsman listed on the hospital directory who you can consult for help at no charge.

Medicare vs. college insurance - If Bill's not covered by Medicare yet, you can call Medicare at 1-800-633-4227 to get him enrolled right away using his social security number. Then, and maybe even now by virtue of his age, whatever insurance Bill has through the college will be considered secondary. So, for example, Medicare would pay 80% of a particular bill, and the secondary insurance would pay the remaining 20%. In a nursing home, Bill will have the 100 days from Medicare, and then the question will be does his college insurance cover nursing care, and if so to what extent. They might cover 80% of it, then Bill would have to pay the remaining 20%. Or they might not cover it at all. Worth checking ahead of time cuz this stuff gets pricey real quick.

ESRD Network Organizations are local teams of kidney care experts paid by the federal government to check and improve kidney care given to Medicare patients. ESRD stands for end-stage renal disease--don't worry, the "end stage" part only refers to a patient whose kidneys are unlikely to regain normal function and will therefore need to be on regular dialysis for some time. Your ESRD Network for Los Angeles is the Southern California Renal Disease Council at 800-637-4767. They investigate problems with kidney care staff or dialysis centers, but they also provide info about kidney care and referrals to various medical professionals.

My heart is with all of you. Feel free to "assign" me any topic or task.
Janet

Frustration resonated

Arlene and Janet, I agree that we have to get a bit more aggressive with Kaiser. We have to make sure that Bill gets his infection cleared up before being moved from the hospital and that he gets more OT , PT, and more swallowing exercise. Maybe we have to register complaints with powers that be. Who is the boss of the nurses and doctors?

However, I do think it makes sense that he stays near Kaiser Sunset, in case emergencies happen. If he goes near Claremont, which I do not have problem with personally, he should have emergency plans firmly in place. Would Kaiser near Claremont, if there's any, be an option?

And Janet, thank you for offering to do research on his weight loss! Betsy, Bill's dietitian is a registered. But she was still kind of clueless. They said they need to make sure Bill is able to tolerate the increased calories without diarrhea. This risk of diarrhea is the primary reason why they have been reluctant to up his calories. We should monitor this and ask for more calories if Bill tolerates it well.

A rant

Arlene here - I find myself disturbed that Kaiser is now trying to find a nursing home for Bill when he's nowhere near reaching the goals they established a couple of weeks ago.  He can't sit for 3 hours, he can barely sit for 3 minutes. He's not swallowing yet. He's horribly underweight.  They haven't done much physical therapy, so he's getting weaker by the day and his hands are becoming more inflexible.  It seems to me the hospital should meet those goals before sending him to a nursing home, although the one reason I can think of to do so is that there could be less chance of infection.

Furthermore, once he's in a nursing home vs the hospital, the benefits clock starts ticking. While he's in the hospital he is fully covered, but once he's out, he's got, I think, 100 days of coverage or partial coverage. I assume he's then on his own. He is not on Medicare because he was teaching full time until he got sick; I was told his coverage is through the colleges' insurance.

As others have mentioned, there isn't one oversight person coordinating his care. The rotations have meant that he's had many different doctors.  We get different messages from different people.  Frustrating to say the least.  Some nurses have been magnificent, others not so much, which is frightening when we're unable to have someone there for long stretches.  No one seems to understand why he's lost 40  - 40! - pounds.

We have not yet been given a full explanation telling us why he has to be in an L.A. nursing home.  It can take up to 2 hours to get to Los Angeles from Claremont depending on the traffic.  Friends and colleagues can rarely take the time to visit him there.  He can't be transported 3x a week for dialysis in his current condition,  --- another reason to stay until he has gained some weight and some strength, although they're talking to Abigail (4 different case workers have talked to her) about finding a place that has in-house dialysis.  Kaiser does not contract with the best places around here -- Casa Colina for rehab, or Pilgrim Place for nursing care.  There seem to be very few contract places between here and the area where Kris lives.

I've been a fan of Kaiser for a very long time, even chose to pay for it on my own before my workplace offered it, but I'm finding myself feeling frustrated and upset with them.

hi Abigail Here. very happy to be here with Dad!
the nurse today is very nice and attentive and gentle. Sandy.
Dr. McKinney said they did find him a bed in a nursing home but they are waiting for the blood infection to clear up. hope he is Strong enough to go there. Also hope he gets good care there.
more details about this as i get it.
Nurse Sandy is checking in with OT and PT to see if they are coming here today. He is not going to dialysis today, he had a big session yesterday.
when you visit dad's room,7787 , you must put on a yellow 'gown' that is right outside the door in a metal cabinet. wash your hands right inside the room and put on gloves that are also right inside the door.

If you leave the room take off the yellow gown and gloves, both disposable. When you come back in put a new gown and gloves on.

Kris, Arlene, Abby -- You are all doing such a terrific job of overseeing Bill's care, despite the extreme exhaustion and stress you must be feeling. In my experience, family has to be aggressive in demanding proper care even at the best hospitals. Infection is also a major problem, so the gown & glove mentality might help until Bill can move to a less infectious environment. (I'm gonna grit my teeth momentarily and ignore the fact that the bacterial infection came from the hospital's own dialysis catheter...)

Today, I'll look into the general issues of 1) weight loss connected with dialysis and 2) necessary caloric intake for someone in Bill's condition. I'm encouraged by Dr. Kohlberg's caloric increase, but maybe some general info will help us to better understand how to turn the weight loss around. I'm also going to try to find out more about medical case managers who can stick with one patient's progress over the long term. Don't know if any of this will help, but I'll report back with whatever info I can drum up. My favorite professor once taught me that knowledge rules.     Janet  

Abigail here. Thank you Kris for being persistent in finding out whats going on with his (mal) nutrition. i just got back here to Claremont and will drive in to the hospital in the morning.

They admitted Bill's mal-nourished

Ok, so by 4p, McKinney brought Dr. Kohlberg, who seemed to have a bit more authority. I am figuring she is a resident. Refreshingly she did not insist that there is nothing wrong with Bill's weight loss. She did not say this is just the disease process and she did not say that this is normal outcome of dialysis. She admitted that they should have looked at this issue sooner, especially because Bill has been in a mal-nourished state for the past weeks.

She agreed to increase Bill's caloric intake slowly. So as of this evening, he will be getting 125 calories more. If his body does well with this, they will increase it even more.

I feel better about this finally. But Abby should keep on the doctors on this issue when she returns. I am afraid it might fall through the cracks again.

Best,

Need your help in figuring out why Bill has lost so much weight

I am updating the blog as Bill is getting a sponge bath which he really needed! He seems to be loving it!

So by 3.15p, I've spoken to the nutritionist named Mika and spoke to Dr. McKinney again. I had her look up Bill's weight at admission and as of today. He has LOST nearly 40 pounds from 141 to 103 pounds over one month!!!!

Much of what they said did not and does not make any sense to me. Mika said that dialysis can take excess fluids out of the body: In fact, she showed me yesterday's record which showed over 2 kg of fluids was taken out of his body from dialysis. But it still does not make sense that this process should leave him in skin and bones condition.

McKinney's explanation was that the weight loss was just a part of the disease process and that since he is bed-ridden, he is losing muscle mass. Ok, this seems to make sense but where is all the calories (all 2000 of it) going then?? They haven't said he is not absorbing nutrients. They haven't said his body is rejecting the liquid feed. So where is all the calories going??

I know you're all very smart. Can one of you please help us figure this mystery out?

Bacteremia

Spoke to Dr. Susan Corey, an infectious disease specialist. She says the infection was in fact from the catheter inserted in his neck for dialysis. After dialysis today, they will take out the infected catheter and put a new one in. This procedure will most likely to take place today.

K

Wednesday AM report

Finally got to the hospital around 9.45am after being delayed with two flat tires. While fixing the tires, I learned that Bill had a bacteremia through a call from a nurse. Basically he has a bacterial infection in his blood which they are treating with a strong antibiotic administered through IV.

As I got into the room, his calm and collected Filipino nurse Laura informed me that I should wear a gown and gloves because of infection possibilities. Bill's room is now considered an "isolation chamber". It freaked me out a little. She did say his fever was down from 100.7 to 99.3, a good sign.

Bill was soon taken to get dialysis. I decided to remain behind to talk with doctors. It was disheartening that I could not recognize any of the doctors' names on the roaster. Apparently attending doctors rotate every or every other weeks and Dr. Morris, who was the attending for Bill's overall coordinating team had signed off. Luckily, Dr. McKinney, the intern, was still part of the team. I asked to see her and she soon appeared. A young white woman with brown hair in pony tail (maybe in her mid to late 20's), she has quintessential American traits of cheerfulness, eagerness to be helpful, reasonableness.

Basically what I learned from her are:
1. Bill will remain in the hospital until his bacteremia is treated. This may take one to two weeks. They are trying to figure out how he got the infection. Most likely culprit: Infection in the shunt line for dialysis in his neck.

2. They still do not know definitive cause of his kidney failures. They hypothesize an oxygen deprivation (from when his heart was not pumping well a month ago) exacerbating an already compromised kidneys from scleroderma fibrosis.

3. Bill may or may not need dialysis permanently. Time will tell.

4. His hands. Orthopedics determined that blood is flowing very well to the hands. The only problem is Sclerderma-caused spasms in his blood vessels in finger tips. His blackened finger tips will not come back. He may need to have them amputated. He may benefit from having blood vessels to finger tips disconnected to prevent spasms. This may deter worsening of Reynauds syndrome.

5. His swallow--A big problem, since this functioning is not recovering as well as they had all hoped. Dr. McKinney said that brain malfunction may be involved. They have pretty much ruled out weakened muscle (from the feeding tube having been in the throat passage too long) at this point. They do not know if his swallowing function will recover. This too, time will tell.

I am still waiting to see the nutritionist. Dr. McKinney's explanation of his weight status was very unsatisfactory. I will write a separate blog on this issue as soon as I learn more.

Hope you're all having a great day!

Tuesday's visit

This is Arlene - Kris, I did not see the nutritionist. When I arrived Bill had been taken down to the 6th floor for dialysis; I kept company with him during the dialysis. He had distressing stomach cramps, but was able to react to the conversation with nods and facial expressions but very little vocalization.  He seemed to enjoy hearing about music at Disney Hall and about Alan Chapman (KUSC announcer), and interested in hearing about Wisconsin and Libya and the earthquake in ChristChurch ---  it distracted him a bit. The dialysis nurse was kind and responsive to his needs.

Once he was back in the room his nurse was busy administering meds and feeding.  A bright silver mylar balloon with "get well" wishes from Janet, who has contributed often to this blog, floated above a table when we returned, along with a cheerful get well card showing a large truck full of chicken soup. He looked at it and smiled.  I wanted to work with him on swallowing but the nurse had gone on a break and the nurse substitute wasn't sure Bill could have ice chips. I had to leave before his regular nurse returned so we did not practice, but at least he had some mouth swabs. He used one of them like a toothbrush.

He looked tired and uncomfortable after dialysis.  It was frustrating for him to try to communicate his wishes and not be able to do so.  Before I left, I wanted to be sure he knew where the button was to call the nurse.

Mittens Mittens Mittens

Someone already brought mittens, and meanwhile, I mailed off two different pairs.  So we will have mittens, mittens, mittens and Bill can chose which he likes best. A warm hand, holding his hands, is very nice too.  Bill Prinzmetal

Shirley says she got in contact with Dad's very good friend Dabney, who lives in Richmond, VA. She also sends hugs! if you are visiting him today, let him know.
ab

Bill's weight

Arlene,
I am hoping you'll be there on Tuesday. If so, would you ask to see the nutritionist to discuss Bill's weight? I never got a call back from Dr. Morris. I am worried that Bill is in a starvation state. It would seem to me, to a lay person, that you just can't get physically strong, which they are trying to get Bill to do, from a state of starvation. It could be a vicious cycle: If Bill cant' take in nutrition from tube feeding he can't have enough strength to even chew/swallow food. The more he can't eat by mouth the more they will have to tube feed him which in turn leads to further difficulties in nutrition absorption.

BTW, did you see his creatinine level after dialysis??

Kris

Presidents Day Visit

Arlene here - I arrived to see the cheerful physical therapist and her assistant lifting Bill so he could sit on the edge of the bed for a few minutes. It was obviously painful; Sonny was there and we applauded when he got to an upright position and Bill smiled. The PT said this time was better than last time.  Meanwhile, the Physician's Assistant was waiting to explain to Bill the need to do two "procedures": move the location of the dialysis connection, "tunneling" it, and replacing the plugged feeding tube with a larger one. Risks were explained. Bill understood and was able to sign the consent form. He would be sedated but not put under.  He hadn't had nutrition for 24 hours, a terrible thing for someone who's lost 20 pounds and most muscle mass, but it had to be. His stomach was cramping and he was not comfortable.

I asked to speak to the docs about what was happening. Family physicians Miller and McKinney arrived; Dr. Miller explained in Bill's presence that he'd had cardiomyopathy and his heart had recovered, that it was not due to cardiovascular disease (no surprise there), and the congestive heart failure may have been due to a virus or perhaps there was a scleroderma connection.  The related problems -- lung and kidney and fingers - were due to insufficient blood circulation.  The fibrosis revealed by the kidney biopsy has not been fully analyzed yet but there could be a scleroderma connection; scleroderma stiffens and narrows blood vessels.  I asked why has he lost so much weight while getting 2000 calories a day. She said when there is no activity and muscles are wasting the body doesn't absorb much, the body's systems aren't working properly.  We'd like to understand this better; I've asked Bill's sister Betsy to help us understand.  She is a psychologist who works with people with weight issues and with physicians.  She's given us a list of precise questions to ask.

Dr. Miller also said Bill's white blood count is elevated; they are monitoring this closely and will administer antibiotics if needed.  Everyone must be careful not to bring germs and viruses to his room!  Wash hands compulsively, don't come in if you don't feel well.  The kids should probably wear masks and gloves around him.

The speech therapist, helpful and friendly, explained how to help Bill practice swallowing -- raise the bed so he is vertical, give him only a very tiny ice chip - melt if necessary - have him feel his Adam's apple go up and down for a full swallow.  I was unable to work on this with him because I had to leave before he was returned from the procedure (I waited 3 hours).

Sonny washed and brought in a pair of warm gloves for Bill to wear and he was wearing them as he was transported out of the room.  His hands need to be exercised.

Dr. Miller is rotating out; her replacement's name is Dersarkissian. Dr. McKinney is not rotating out yet.
Bill's nurse on this side of the building is insistent that there be only 1 contact person; until Abigail returns on Thursday, that person is Kris.

hi this is Abigail writing. just got a call from the case worker. its a bit confusing because she is the 3rd case worker i have spoken with so far. she (or they, i guess?) only want to communicate with one person. so they will call me and ask me questions. what i will do is talk to everyone interested and make decisions based on that.
the case worker today, Alsa, is trying to get him a bed in a dialysis center. this is a very special thing, so he might not get this.
 if he does not get in the dialysis center they want him in a nursing home/rehab place near the hospital. this is so if he needs to go back it's close. she had other reasons that i cannot remember.
he will need dialysis 3 times a week (according to Alsa) if he cannot sit in a wheel chair and have me drive him they have to get special transportation until we can.
my mom really wants him to be at a nursing home where we can all easily visit him. i agree with this, but i dont want to push it if he needs to be close to the hospital. maybe we can ask for him to be transfered when he is not as weak?
so much going on here moving everything (with 17 degree weather, snow and ice everywhere i step) packing, giving things away, dealing with lots of friends who are sad that i am moving, car troubles,injured back, so much too much to list or get in detail with. anyway, i will be back late night wednesday.
love,ab

Here's a journal article on kidney fibrosis: www.nature.com/ki/journal/v69/n2/full/5000054a.html. Much of it is written in medical-ese that I don't pretend to understand, but maybe one of you can make better sense of it. In general, fibrosis refers to scar tissue in or on the kidneys. It physically distorts their structure, and that prevents them from working properly. It usually occurs in response to a chronic long-term problem. Dialysis is the standard response to fibrosis--it doesn't alter the scar tissue, but it does cleanse the blood. There are a lot of articles on PubMed and other scientific databases about "renal fibrosis," but I couldn't find much general info except on websites that might not be trustworthy. Hopefully, the docs will be talking with Kris very soon.     Janet

Hi Friends,

I visited Bill on Sunday afternoon. He was much more coherent than the last time I visited and that was heartening. I brought him a card signed with messages from Pomona students and his face lit up as I read each message from students who had worked in his lab or taken his class. The messages would have lit up anyone's face: "best class I have taken at Pomona" "I loved your stories" "You made everything so interesting" and so on. His students love him!

He asked me how my research was going and he seemed to follow most of what was going on. He looked the happiest when Sophie and Olivia arrived for a visit.

I was disturbed by how much weight he has lost and by his weakness. He has lost his voice and is back to speaking in a whisper. He no longer is strong enough to walk and I don't know if he can even sit up on his own. These are all things he was doing a week ago- I was told. Fortunately, Kris arrived while I was there. Bill needs an advocate and I have no standing with Kaiser because I am not a relative. Kris and I spoke to the speech pathologist, who seems very competent, about the weight, who was managing the case, why his feeding tube was shut off and so on. We arranged for Kris to talk by phone Monday morning with the MD who is managing the case. I hope she can push them to investigate why he is losing weight when he is supposedly getting 2,000 calories a day. Kris was great- really persistent.

If you visit Bill, do feed him small ice chips and make sure he swallows. He is supposed to put his finger on his Adam's apple so he knows he has swallowed. He is not real cooperative-- except with the speech pathologist who is fabulous with him- she insists that he swallows and tells her when he does. When I fed him ice, it mostly ran out of his mouth. So be firm about him swallowing. He does not seem to know whether or not he is swallowing and it takes real effort for him to swallow.

He enjoys the visits very much and I do not think the nurses give him the practice swallowing that he needs. So do visit if you can.

Best
Debby

No flowers or plants, but would it be OK to have something like balloons delivered to Bill's room? I've sent several letters, but the mail is slow, and if possible I'd like to get something to Bill today to brighten his spirits for a moment while others can't visit.

Also, I realize the issues of food are more critical (!!) right now, but regarding the hands: There are small credit-card sized plastic things called "Hand Warmers" that give off 8 hours of heat without electricity and can be placed inside mittens. These are very lightweight and shouldn't slip out of the mittens, and maybe Bill's braces could be worn over the top? I can send some if any of you think they'll help.

Janet

please visit

hi this is Abigail writing from vt. i hurt my back and its slowing down my moving. my mom wrote me this distressing e-mail, and there is no way i can get back early at this point. i'll be back wednesday.

I talked to Kris a little while ago and things aren't very good. The feeding tube is blocked so he's getting no nutrition for 24 hours - meanwhile he's lost a lot of weight and continues to lose weight.  We don't know what it mean that there's fibrosis in the kidneys and what needs to be done about it.  There doesn't seem to be a doctor coordinating everything.  No one visited on Saturday and until Debbie got there today, Sunday afternoon, there wasn't anyone there. Kris's nanny is away for the holiday weekend.  He's not practicing swallowing and has regressed in his ability to do so. The nurses on this side of the building are much less willing to give information, it has to come directly from the doctors and only when someone is present, so Kris doesn't know what's going on.

If you can return a day earlier if possible it would really help. You could fly back when he's more stable to finish your move. I'll be there for a while tomorrow and will try to get a better grip on what's going on.   Love, Mom

From Josh in Thailand

Hello 
I just wanted to thank all my family and friends for continuing
to visit my father during this difficult time. It has been hard for me
as currently I'm in the far South of Thailand (Songkhla to be exact)
and have just signed with a new company here and cannot leave the
country (unless of course things got worse).  I have been reading the
blog daily and keeping up to date on my father's progress and all the
happenings from the hospital. It has been great reading stories from
old students and all the great pictures and stories that my sister has
been blogging on a regular basis. Let's all hope for as quick a recovery
as possible for my father. Josh

I think I lost my cell phone today

In case anyone is trying to reach me, I misplaced my cell phone today. I suspect I left it at the hospital last night. So until I go back there to retrieve it, the best way to get in contact with me is via e-mail.

Kris

Kidneys are still under siege on Sat AM

Called the nurse and got Bill's creatinine level as of 2/19 am. It has crept back up to 4 from yesterday's 2.9. This is due to the fact he did not have dialysis yesterday. His kidneys are clearly not doing too hot.

Bill was getting dialysis as of 4.30p today.

Friday evening visit (2/18)

It was pouring pretty hard by Friday evening and the traffic has come to standstill as it is usually the case with LA drivers. I picked up Sophie and Olivia from their art class at 6pm in Pasadena and by the time we got to Kaiser parking lot on Sunset was 7p. My friend Soni Kim, who's known Bill for many years took two hours to get to the hospital from Long Beach.

Bill beamed as we filed in. He had lost his voice but clearly recognized us. I was shocked by how emaciated he looked. In fact every time I visit he gets thinner at an alarming rate. Bill's very sweet nurse Henry looked up in the computer his nutritional status: Bill has lost 9.3kg (nearly 20 pounds!) since Jan. 26th while on a 2000 calorie daily intake. The nutritionist remarked that the patient was "mildly" underweight. That would be an understatement. To me, he looks like a concentration camp survivor. How does this happen when he is supposedly taking in 2000 calories a day??? I am really worried.

The girls lined up two chairs in front of the TV and watched Cartoon Network happily while the adults talked. Bill complained of pain in his legs and asked us to take his boots (designed to increase his circulation), which the nurse did. We tried to smuggle artificial tears for Bill's dry "scratchy" eyes but Henry somehow caught us in the action. He left a note for the doctor on call to order the artificial tears.

Bill said he was happy. Was it because he was on morphine? No, he said. When I asked him to explain, he said he will later. I suspect that it has something to do with the support and care he has received from family, friends, students, and colleagues. I think he knows he's loved.

Julianne's Friday visit

(This post was written as a comment on Bill P's post.  More people will read it here, so I took the liberty of copying and pasting.   Julianne, hope you don't mind.  Arlene)

 Julianne said...

It was great seeing Bill yesterday -- the room he is in is spacious and it looks out at Hollyhock House, the Frank Lloyd Wright home which sits atop green Barnsdall park like an Aztec cake decoration.

Bill is astute, keeping track of what the nurse gives him for pain, glad to hear his heart is actually ok, but in the afternoons he is sleepy after PT and meds. He LOVES having visitors -- and having his hands warmed by cozy hands. Please come and visit if you are NOT sick with any of those lingering viruses going around.

His doctor, Mclaren? was lovely, open and helpful in answering questions (Bill asked that she call him 'Bill' instead of 'Professor Banks' -- but frankly, I like the more formal monikor because it reminds people that he is the customer and that he needs to be addressed directly...) His male nurse, Henry, was likewise glad to offer instruction and was very quick to respond to a call for pain medication and for turning/back rub.

Don't be frightened of Bill's blackened fingertips, they are not infected.. it is the way the body looks when the blood vessels stop doing their job. You can't 'catch' anything from holding his hands, gently stroking his arm, his face and head. But your hands need to be ABSOLUTELY clean.

I was embarassed that it took me several times to understand that Bill needed vasciline for his dry lips. He would touch his lips and then point beyond the foot of his bed to show me where the lip balm was sitting on top of the sink/dresser across from the bed. Three times I looked at the contraptions anchored at the foot of his bed and looked back with a shrug, asking if he needed something changed with those contraptions. But Bill is completely generous, forgiving and appreciative.

Meanwhile Bill Prinzmetal was absolutely expert help for Bill. He told me it felt great to learn from the Physical Therapist how to help get Bill in the correct position during the visit when he was first able to sit up by himself for a full two minutes. His doctor later said that was HUGE.. a good sign and an important first step. Bill P. knew just how to get the bed in the right position so Bill could crunch on a couple tiny ice chips -- just enough to moisten his mouth to aide talking. Then he knew to put it down again when Bill needed to rest (much more comfortable).

So don't worry about being there with other visitors, that's a great way to learn. And it is fun. It was wonderful to see Bill P. again. We hadn't seen each other more than once or twice since we last worked together, thirtyfive years ago in Bill's Pomona College Psych lab (in the basement of Mason Hall). :)

HERE's another Way to help.
The doctor mentioned that the transition to the next phase of treatment -a Rehab Facility with or near Dialysis? - may be slowed a bit because the usual coordinator is on break this week.. but they want friends and family to visit the places on the list and give feedback to Abby as that decision approaches.


the only thing I would add is that they asked us to put his hands into those braces to protect from further curling in and Bill agreed it is a good idea, but he prefers to only wear the braces during a nap -- and I kicked myself after we left for not doing that after his Morphine.. a nap was definitely on the way before we left.  and.. should we have done exercises again when he had that Morphine? 

Low tech idea

I am off to find some mittens for Bill, but I had an idea. His hands are cold because he can't get blood there. We don't want him to lose more of his fingers. I have something similar and without external heat, I can't get my fingers warm. I will put my idea, Abby-like, as a picture. He will either like the feeling or not. I am back home (Bay Area) so someone will have to ask the nurse or stop by Rite-Aide. (Maybe its good to ask the nurse or doctor.)

Forgot the Madonna

From Bill Prinzmetal

Thursday
Got to hospital about 12:00. Bill was in dialysis. I waiting in his room until about 2:30 and went down to dialysis (6th floor, I think). He was just finishing. He was asleep.

When he got back to the room he was pretty tried. We opened cards and said a few words now and then. He told me “Be Patient!” Someone sent him a beautiful book by Oliver Sachs on music and the brain. I read part of the preface of the book, but he got tired of that. (I think that the chapters themselves are more interesting).

Just before I left, I told him I was going to call Kathy Pezdek to say I was on the road to Claremont. Bill said he wanted to speak with Kathy. When I put her on speaker phone, he smiled and just glowed. Kathy was able to understand most of what Bill said, even though Bill’s voice was very weak.

When I left I put al jazeera on TV, which we both thought would be pretty interesting. (The next day he gestured that it wasn’t very interesting).

Friday
Got to Hospital about 10:00.

Camile can by and visited with Bill a while.

PT (Christina) can by and was very good. He had a painkiller first and then did all the exercises (exercises are listed on the wall). Bill enjoyed it the stretches and exercise. Mostly flexing is foot at the ankle. Bending his knee. Moving his legs in an out. And there was a finger exercise. (See pictures on wall). His own muscles contributed a lot to this. Christina (see picture) had him sitting up on the side of the bed for about 2 minutes. (The picture was approved for posting by Bill.)

Bill enjoyed the exercises (or maybe it was Christina (-; I enjoyed doing them with him. He is suppose to do 10 of each 3-times a day. Sometime he is just not going to have the energy, but when he does, its something that he likes.

Aside: going to the airport, I had a “Prinzmetal you are so stupid moment. “ When he was doing the exercises, why didn’t I play music from his iPod? I could have at least played a little Madonna.

Irv Biederman (a colleague from USC) called and talked with Bill. I had to interpret a bit because Bill’s voice is quite. But Bill understood Irv.

Speech Therapist can by, practiced swallowing with bits of ice. Instructions are on wall. We should be doing this with him. Elevate his head with the bed, give him small bits of ice. He should put his fingers by his throat and see if he can feel the swallowing. If he dribbles a bit, that is fine. She was concerned that his voice was so weak. She was going to talk with doctor about this. I do not think that he likes this particular speech therapist. But small bits of ice do help him speak clear.

After an active morning, he fell into a heavy sleep
My old friends Julianne and John came by. (She will post separately). Julianne was an undergraduate at Pomona when I was a graduate student. Bill woke up a few times and was very pleased to see Juliana. Juliana had visited with Bill in November and in the hospital in Glendale.

Julianne and I (on the request of Kris) asked to speak to the doctor. The doctor (Jamie McKiney?) came in and reported that there is some fibrosis in the kidneys. But the renal and rheumatologist and going to go over the kidney biopsy results.

A new heart scan results came in and the heart “bounced” back. That is great news.

Bill listened to the doctor’s report. I told him that in the future, when he got a bit better, he would have to continue the blog himself, and he nodded.

The doctor paged the kidney specialist who wasn’t around. The doctor (who looked young enough to be one of Bill’s recent students) said she would call Abby and give the entire report.

I was sad that in 2 days, we had so little quality time, he slept a lot. But when I saw him in July and his scleroderma symptoms just started, he slept about as much. His voice is very weak. But I have to remember that the first time I went to the hospital he couldn’t speak at all, and then second time (2 weeks ago) he uttered his first comprehensible words. He as lost a lot of weight, but with the gastric tube, hopefully he will gain it back. He did tell me "be patient."

The cards he received mean a lot and he like the phone calls he received (with a speaker phone).

Julianne, John, and I left around 4:00.

P.S. I will send some mittens which might be useful in keeping his hands warm.

Out of ICU - Great news!
Janet

GERMS! are still a NO NO!

http://en.wikipedia.org/wiki/Immunosuppressive_drug

Hi this is Abigail writing from Vermont.
please use caution visiting Dad. He has been placed in a less intensive bed (nurses have 4 patients instead of 2) but still cannot deal with any  GERMS!
He is prescribed and still takes immunosuppressive drugs. So his body cannot fight virus' / germs.
wash hands! if you are feeling at all under the weather, don't visit, send a card or call instead.
sorry this is so blunt, but i could not sleep thinking that this info was somehow forgotten.

Update as of 2/16 Wed late PM

Earlier today Bill asked to see Sophie and Olivia. This is the first time he requested to see them, which thrilled me. I also thought Sophie and Olivia could visit more now since he has been downgraded to regular wing of the hospital (Room 7787, still on the same building same floor) from the ICU. They had also said they'd take his feeding tube out of the nose after making sure his G-bag is securely in place.

I brought the girls over around 6p. They both asked a lot of questions of their dad, i.e., why various tubes and wires were there. Bill did not want them to see his blackened finger tips so I sent the girls into the bathroom while putting on a glove on his left hand. He was not as alert and engaged as he had been in the morning; it turns out that his blood sugar was 35 due to the fact that he had not been fed any food for 24 hours (they had to do this in order to prepare him for the G bag). They gave him an insulin shot immediately.

The girls and I decorated his new room with the various pictures (of them and of Bill's nephews William and Fitz), cards he'd received so far, calendar, children's art work, and PT instructions on finger and body exercises (all visitors should look at these PT sheets on the wall and help Bill do his exercises. The swallow exercises are particularly important!) We also got his radio tuned to NPR with much better reception.

We had dinner at the cafeteria. The girls had a great time and were proud of paying for their food at the register (of course with my money).

We went back to Bill's room, made sure that his room temperature was warm, had the nurse check his blood sugar level again (this time it was in the normal range of 83). The children sang songs they learned from school, told Bill they loved him. We packed up and left. We might return on Thursday evening if possible. If not, definitely on Friday evening along with some friends of mine.

Bye for now

Wednesday, Feb. 16th

This is Arlene: Kris was with Bill when I arrived (again via Metrolink and the Red Line) about 10:45. Bill was mostly thinking clearly and even wrote a note when it was too difficult to talk.  The tube was still in his nose, where it was supposed to remain until 24 hours after insertion of the stomach tube, which occurred yesterday.

The back-up rheumatologist showed up around noon. Bill asked about his blackened fingertips and in response the doc explained that the blood vessels had gotten so stiff and narrow, and his heart was pumping so inefficiently, that the tissue at the ends of his fingers (left hand) could not be supplied with adequate blood.  Bill asked what will happen, can they be fixed; the doc said he'll have a hand surgeon examine the fingers.  It's still important for him to be kept warm, particularly his hands and feet. The toes had been bluish but have recovered.

I'd arranged for Bill to take a call at noon on my cellphone from his former brother-in-law, Mac Ryland, whom Bill likes a lot.  I held the phone to his ear; Bill's voice was soft but he was clearly very engaged in the conversation, nodding and smiling and occasionally commenting.  He was happy to have connected with Mac.

We looked at cards and notes that had been sent by former students, colleagues, friends, and although he'd seen them before, I think he was really understanding them for the first time.  I'd brought a newspaper and he brightened up to see it but he didn't spend more than a minute looking at it.  He wanted to listen to KPCC, 89.3 FM; I was able to find a place on a table where the static wasn't too bad but every time I sat down the static got worse, so I ended up standing in a certain spot for a while.
 
Results of the kidney biopsy were not yet recorded on the computer so the doc was unable to say why Bill's kidney function continues to be a problem, -- although the indicator number is going in the right direction: - down (post dialysis).  And today's procedure, a heart scan using a radioactive liquid, will tell them lot more about the leaky aortic valve and other possible heart problems.  His heart is pumping at 60% efficiency as opposed to less than 20% when he entered the hospital.

I left after he was taken down to the nuclear medicine department for the heart scan; was told he will be moved today to Rm. 7796 some time today. Same floor, other side of building.  Kris planned to be there when he returned from the heart scan.

hello!

Hi this is Abigail here--

just left the hospital and i am getting ready to go back to VT to finish up everything i dropped to fly out here. thank you in advance for visiting dad. when i left i told him who has already made some plans to drop by and this made him worry much less about my absence.
i talked to his 'case manager' Adriana Mendez, rn today about what happens after he is released and what goals does he need to meet to be released.
1) goal for release from hospital: A)Dad needs to be able to sit up in a chair for 3 hours. (i don't think i can sit up in a chair for 3 hours with out wilting over!) this might mean 3 hours over a whole day i hope.
B) he needs to be aware and lucid in mind.
2) next step after hospital: A) he qualifies to go into nursing care facility for a certin amount of time. they will do rehab with him there.i was given a hand out that has places listed that take kaiser insurance.
B) we need to choose one ASAP so the case manager can put in a room request to the top 3 we want him to go to. C) he will most likely need dialysis several times a week and they do not provide transportation. so the nursing home needs to be near a place that does dialysis and takes kaiser insurance, and be easy to drive to. I am guessing I'm going to do the bulk of the transport so i really want to help make this choice.

ya'll reading me? great.
3) A)After the nursing home/rehab place he can go home and there are options for nurse care at home and it is (B)suggested to find a second person (besides myself) to help for a while (otherwise i'll be on 24/7 and i do need some time to myself)
btw-- we checked into his insurance and everything is covered. if he asks, he needn't worry. just get better , don't stress!!

11:15 am Feb 15 Abigail here. hardly got any sleep last night. dad is very worried about insurance and what is covered and what is not. As is appropriate for his situation. he's worried they are racking up a huge medical bill with him. We are going to look into his insurance coverage so we can see what is happening. he is much more lucid yesterday and today, understanding much more. he dictated many questions and i wrote them down. he is worried about his medical care and finances. he asked me to protect him. and of course i will do my best.
we are in dialysis now and after this we will go into another room and he will have a biopsy and they will move the tube.

news update. 3:30 pm Monday,Abby here:
cardiologist will not do the invasive cath test. he is going to do test involving some radio active fluid that passes through the blood and enables the doctor to observe his heart over an hour.
they think his heart is much better. but a closer study will determine this. they put an order in to do this.
So we are now waiting for the kidney biopsy, the feeding tube switch over to his stomach, the radio active test for his heart. at some point (maybe today or over the next few days)  they will move him to another bed/room, a small step down where nurses have 4 patients instead of 2.
As soon as we know what room number, we'll post it on the blog. I think this is actually good, because they think he is stabilizing enough to be in less intensive care. he also was given ' boots' from the physical therapist josh, that Velcro on to help his feet. he can wear them for an hour or so at a time.

We got the cards here!!!!thank you Bill Prinzmetal, Sandy and Birch, and everyone in the department of psychology at Pomona college!!

kidney biopsy tomorrow, also they will take him off nose feeding tube for many hours to clear is stomach and then they will install a feeding tube  (i thinks its called the G tube) directly into his stomach.

Friends, Come visit!

Come Visit! Even if just for a little while. 
he is worried about being abandoned and forgotten. 
just stopping by makes him feel so much better! go to the second floor, check it with security. take the elevator to the 7th floor, take a left ,walk down the hall and look for numbers close to 7327.
he's in room 7327. just walk right into the section and into the room. he'll be so happy to see you!!

happy valentines day everyone.sending love to you!

this is Abigail 11:30 am on monday 14th i wrote this one really fast, i'll post more if i missed anything. lots of info!
I talked with one of the primary physicians. she is checking in with all the doctors to see where they are with test and decisions.
his swallowing is still weak so they need to decide if he needs the tube directly into his stomach. and if so they need to do tests to see if he can handle another wound from the incision.for the time being he gets ice chips and needs reminders to swallow and just needs to practice a few times a day to get his strength back.
primary doctor is checking with the cardiologist about whether he is going to do a cath test to look at his heart, or not. if so she is asking what various indicators are we waiting for.
she is also checking in with the kidney doctor. he had wanted to do a kidney biopsy. she is inquiring; does the kidney doc still want to do this, yes or no. why or why not, or another test, also what indicators are we looking for in that case as well.
his kidney levels went from 4.7 then after dialysis yesterday, down to 3.0 today!
he is getting just a tad over 2,000 calories a day, but in small doses over 24 hours, so he feels hungry, but is getting enough. she is going to have the nutiotion department look at him and weigh him (i think) and decide if that is going the right way.
physical therapist had him sit up in bed and has some leg movement exercises to do daily. Dad is also supposed to get into the cardiac chair daily as exercise.
check in later for more info!

Address question

I have been telling people to send cards (not flowers) to:

William Banks (Patient)
Kaiser Sunset
4867 West Sunset Boulevard
Los Angeles CA 90027

But I am only half sure that address is correct. I didn't want to put the room number because he might move rooms. Could some one confirm. (Or if there is a card from me, that would be confirmation).

Bill Prinzmetal

Serendipity

Arlene here  - When Kris arrived this afternoon (Sunday the 13th),  Abigail and I decided to take walk around Barnsdall Park which is on a steep hill right next to the hospital's emergency entrance.  She needed a break.  The day was perfect - blue sky, fluffy white clouds, sun, gentle warm breeze, flowering plants, clear panoramic views. We walked up several long staircases, and as we approached the top of one of the last flights we saw an open door and what looked like a children's art class going on. As we walked toward the door we heard a loud, "Abby!!!", and out rushed one of Abigail's Brattleboro friends and fellow/sister artist, Katy, who was leading an art class for a group of little kids! Lots of hugs and catching up. Katy lives in the Echo Park area, stitching together various art related jobs and taking ceramics at Glendale Community college.  She and Abigail will stay in touch.
This was just absolutely stunning and amazing to me -- and "very Abigail."

Abigail here-
so Dad completed dialysis today. we came back to his room he was in a better mood and was able to watched some TED talks online about various subjects and was paying attention and laughing appropriately and understanding the complex info. very fun to hang out with him today.
He still really wants to leave the hospital and when his mind wanders he obsesses about getting the heck out of there. i think he will continue to ask to leave until he really gets released. i keep reminding him of the various goals we are trying to reach in order to be able to leave.
going into and completing dialysis for the day felt like such a huge hurdle that i could totally deal with the constant reiteration of facts i had to dish out to him along the side. one minute for me is like 6 of his minutes. gotta have Patience.

from Cousin Shirley

Abby - wish I was closer to LA while you are back in VT. Tell Bill hello from his cousin in Virginia;
I do say prayers and will do my best to send for good stuff for Bill ! I am reading all your posts, and finally
saw where you would post for me. Tech skills less than minimal.  Remind Bill we wore those linen
napkins on our heads to the Palace Theatre. It may get a chuckle.

Best to you and other family, Cousin Shirley

Fantastic to hear he's in dialysis! Janet

we are in Dialysis!!

hi yes we are right now in Dialysis!! he did not fight the technicians and is just allowing it to happen. hope he does not put up a non-sense fight tomorrow. one day at a time!!!
ab,11:43 am

this is from Abigail:
Here are the dates i will be absent from Dads room:
Tuesday 15th 7pm red eye from Ontario airport
until
Wednesday Feb 23rd 10:30 pm.
so i will be back in dads room by Thursday the 24th in the AM, or if i can handle it, Wednesday night.
anytime during that week, please come visit.

i will talk to the medical social worker Monday (she is off for the weekend) and ask about a professional who can keep track of whats going on while i am gone.

thanks,
Abby

hi this is Abigail, 10:30am
dad's doctor thinks he is not sound in making his medical decisions and has ordered him to have dialysis. he might put up a fight, might not, we'll see. we are bringing him to the floor to get it done very soon. luckily he's sleeping hope we can get there and set it up and i'll stand right there with him.

Sophie and Olivia visted for the first time today

Today is Bill's 23rd day at the ICU. After thinking and talking with others about the pros and cons of Sophie (7) and Olivia (5) visiting him at the hospital, I took the plunge. They wore masks and gloves just to make sure not to pass on any germs to their dad.

Bill smiled upon seeing them but could not sustain attention on them. His eyes moved away after a few seconds. Sophie and Olivia were intimidated and afraid, although they were told in advance about their dad's physical appearance (tubes, needles, the blackened fingers..). Olivia clung to me and cried while Sophie put on a brave face, saying that she was happy because he was going to get better.. Olivia cried throughout the day. She was able to say that she was sad whenever she thought about daddy.

I do not know if they will want to visit again any time soon.

I managed to convince them to give up their three rats and a guinea pig. It broke my heart to do it and I found myself saying over and over that it is for the best..

BTW, does anybody want to adopt adorable rats and guinea pig??

Kris

this is Abigail.
just made a 'deal' with Dad. he will get the treatment and i will live at the Glendale house with him.
lets hope we can agree on this again tomorrow when he can get another chance.

this is Abigail.
i arrived here at about 3:30/4 pm. he was in the dialysis room, refusing to have anything done until i got there. i rushed to that floor with a nurse and he was smiling in his dock not hooked up. the dialysis technicians were all sitting around waiting to get instructions. they had a doctor on the phone. i pleaded with Dad to get dialysis. he said that he did not think his insurance covered it. i said it was fully coved and that all of his doctors think he needs it. he said he thinks that i am using circle thinking. he wants to go home. i said you need dialysis in order to get strong enough to go home. he wanted to make a deal that if he does the procedure he gets to immediately go home. he wanted to talk to his lawyer.
he has been pleading with me to bring him home. i keep saying we need to get the doctor to clear him before we go home.  i don't think he is thinking clearly at all, but, he says he needs proof as to why he needs dialysis. that is valid.
i called the social worker and asked if someone could determine if he is thinking clearly. hope to hear back soon.

He is in a rough place, but asks about visitors. come stop by if you can, even for a short time.

AWESOME!

From “Prinzmetal”

         Late last night I wanted to check the blog, but I only had my iPhone and I could not remember the blog address. So I googled, and by accident, came to RateMyProfessor.com about Bill.  The most frequent description was “awesome.” 

         Below is a sample of the student comments.

Bill Prinzmetal

Professor Banks is AWESOME!!! He makes every class interesting by including lots of cool demos. Make sure you get him to explain them though, because sometimes he gets so caught up in the fun stuff that he forgets to clarify WHY everything happens as it does. Also, AEROBICS is the best class in the world :)

Aerobics is so fun. Take it.

Prof. Banks is brilliant! His per cog class is a challenge and an academic staple for any psych. student. Prof. Banks was a joy to have as a professor and don't forget to join him for his aerobics class ;)

Awesome. We watched Predator. What more could you want?

This class was so science-y that I would have hated it with any other professor, but Banks does a great job of keeping it interesting without cutting out any of the important details. He's hilarious and brilliant and I never wanted to miss class because of his demos.

Banks is the best professor i've ever had in my entire life in any class.

AWESOME Professor

Banks is AWESOME. One of the best professors I've had so far at college. If you have the chance to take any of his classes, jump on it, because they fill up quickly!

Professor Banks is one of the best profs I've ever had. Every lecture was interesting because he included a lot of demos along with his lectures. I recommend this class to anyone who is interested in psychology.

Professor Banks made class really interesting and fun. His demonstrations rocked! He has so much knowledge about the different areas of perception and cognition, and his passion for the material really comes through in his teaching.

Professor Banks deserves your love and attention! Mostly because he knows what he's talking about and he talks about it entertainingly. Plus he's a good man with a demonstration.

Your typical scatterbrained, funny professor (-;

21st day at the hospital

Today was a low day. Everyone's nerve is frayed, including Bill's and mine. Abby's AM post about Bill refusing dialysis was very alarming. I called him several times from work to persuade him otherwise. He kept on saying that he will be all better if he could just come home and take a nap. I told him the quickest way to come home is by getting his kidneys back in working order. The nurse said that his creatinine level had crept up again, to 3.7. That was very disheartening.

When I got to the hospital around 6p, Bill was practicing sitting up in the cardiac chair. He kept on trying to get up from the chair. He believed that if he could get up from the chair he could just walk out the hospital door. Sadly he was mistaken.

I finally got to talk to the charge nurse Art at 7.30 about the constant changes in the nursing staff. This has become a real issue, as the quality of nurses varies and continuity of care is just not there. Art said he would try to minimize disruptions in nursing care. We will see.

When the night nurse Allison came into the room around 8p, Bill woke up from a brief nap. We tried persuading him to do dialysis again. This time Bill said he would consider it since the articles Janet Jones sent said it was harmless. We could broach the subject tomorrow AM.

Good night...