To add to Kris's notes

Arlene here. Yes, we expected to hear that Bill was sliding downhill fast and there was nothing more they could do, but Dr. Bronstein indicated Bill is not at that point, despite the intubation.  He thinks Bill's lungs have been the source of many problems, not his heart, and he thinks the periods of dementia may be due to CO2 buildup (from insufficient air exchange in breathing) rather than over-sedation or the scleroderma, -- but he's not sure.  Bill has interstitial fibrosis in his lungs (if I got that straight).  He told us the rheumatologist may not have been as involved as we expected probably because the treatment being given (immuno-suppressive medication and prednisone) is pretty much all they can do.  He will put in an order to get the rheumatologist involved.  I think I heard him say they can't do anything about the advanced Reynaud's, and that giving him drugs to open arteries and veins to counter the Reynaud's is not appropriate because  - I think - it can cause blood pressure problems.  I may not have this quite straight.

He said his nutritional status was not good -- albumin(?) is low and they're working on this.

We said more than once that we want Bill to be kept as comfortable as possible - meds for pain and anxiety -  and he said absolutely yes, and that he will pass this message along to the next ICU doc who will replace him when he rotates out in 2 days.  We mentioned 'palliative care' - where comfort is paramount but the disease is still being treated - and he nodded in assent.  We need to be sure these orders follow Bill out of the ICU.

Dr. Bornstein made the point that the disease is not curable, Bill will continue to be severely disabled, but the course can be erratic, with rapid bursts and periods where it is smoldering but not active, and that the treatments can hold it at bay for periods of time.  He was surprised to hear how less than a year ago Bill was teaching full time and apparently in good health and how rapidly he deteriorated during the summer, and that the illness was not diagnosed until September.

He encouraged us to untie Bill's arms while we're visiting (they are loosely tied so he can't pull out the ventilator tube) and to move them around, play music, read to him. He said progress towards being able to be moved to a nursing facility was lost with the loss of lung function and now lack of movement in the ICU (even dialysis is done at bedside), but although the disease cannot be stopped, once off the ventilator he will be out of the ICU and can start working again with the physical therapists, sit in the cardio-chair, get ready for a nursing facility.  If breathing/air exchange continues to be a problem, a permanent ventilator is possible (can't think of the name!) but it would eliminate his ability to talk.

He said Bill's kidneys will never recover and dialysis will be a necessity from here on out.  Kidney failure is not common with scleroderma.  He said the swallowing problem is due to the scleroderma.  Although this all sounds grim, I am relieved to know Bill's pain and anxiety can be alleviated and, - dare we say, - there is hope that he can have enjoyment from music, from watching movies, from reading or listening to books, from being in the presence of his children and friends.

update 3/30/11

So Bill's doing better. He is still on ventilator in the ICU, but his respiratory therapists are steadily working to wean him off of it. He still sleeps a lot but is more alert when awake. Just a few minutes ago he was able to squeeze my hand in response to my asking him to do so. This means he is understanding commands!

Had a family meeting with Dr. Bronstein, the ICU director at his request. Abby, Arlene, my sister Sunny, and I were present. Frankly we expected the worst. It turns out that Dr. Bronstein is a big believer in "communication" who does a lot of family meetings to facilitate patient care. Dr. Bronstein is a lively, entertaining character who talked a lot. The gist of it: He can not really tell which way Bill is going. It is still wait and see situation. He is working to take him off the ventilator first and foremost and he doesn't know how long it may take. He will remain in the ICU while on ventilator.

The frustrating thing is, no doctor, including Dr. Bronstein, has been able to say exactly what is wrong with Bill. His latest CT scan of the brain, chest X ray both revealed nothing of note: No stroke, no pneumonia, no infection.. They make vague references to scleroderma, but various scans donot really seem to support that either.

I have a renewed if guarded hope that Bill may still pull through this...

Kris

Tuesday 3/29/11

Arlene here.  Heartbreaking to see Bill intubated again. It appears that he is well attended in the ICU and more closely monitored than before. He doesn't have to be moved for dialysis. But he was obviously frustrated, agitated, and in pain; - so terrible to witness this. The words "Do not go gentle into that good night, Rage, rage against the dying of the light" went through my mind.

He was responsive when he sawAbigail and he looked at her as she spoke to him, but he became calm only after some pain meds and Ativan were administered.

My view is that whatever can be done to alleviate his suffering should be done.

ab here-
Quiet day today. Came to the hospital this AM with my mom. Dad still expressing distress so we asked the doctor if he could have anything today for pain/anxiety and yes, they let him have some of both. Dad settled down, slept alot, woke up here and there. Pain eased. The dialysis team came up here today. Same people who work in the dialysis room, they all said hello to me, asked about his condition, and asked about Sophie and Olivia. Speech therapist came by, she is really great--and i totally forgot her name-- said they will start again when he's off the vent.  Doctor finkelstine called me, she has visited him here even though he has new doctors on this floor, just to see how he's doing. She just called to check in and is very nice. I think we are the same age. I had a short meeting with the social worker, Eric Pierce, we are all having a meeting tomorrow.
His new doctor is Dr. Bronstein.
Since dialysis dad has been very tired only really waking up once and was not too happy, if i am reading his eyebrows correctly.
we are sort of watching the news.

Monday, Abby here. They put him on the ventilator late last night. the tight air mask was not doing what it needed to do. lots of phlegm needed to come out. when he's awake he is much more aware and his eyes look clear...compared to yesterday when just the whites of his eyes were puffy and almost opaque. he was hardly focusing. today, when he is alert, he's mostly expressing pain/fear /discomfort/distress, as far as i can read him, but at least he's able to express something.
i have been playing him music from his ipod. can't seem to locate the good  heating pad for his feet. they moved all his belongings to this new room 6110 west ICU in special patient bags. heating pad might be deep in the stuff archives here.
worked on packing for about 4 hours today with sunny. still LOTS  to do at the Glendale house. i will stay late if not all night here, and spend maybe 2 hours there Tuesday afternoon. Kris found her phone!

from Josh Banks Bill's son

Hello,  I have been reading all your messages and support from here
overseas in Thailand and can't thank everyone enough for going to
visit my Father during this difficult time. Currently, I'm teaching
for a summer program around two hours from the city where I'm living
(Songkhla in the far south) and have been getting up at 4:00 am to
make the commute. I booked a ticket for April 16th and plan to go home
for a few weeks before I start teaching again in May.I'm Looking
forward to seeing friends and family again. Josh

So sorry to hear Bill's had a bad turn, but he's a fighter, he'll get out of the ICU again. Sounds like docs and nurses are doing their best. Is fluid retention still a problem? It can cause pulmonary edema, dangerous for lungs.

Kris and Abby, Josh too and Arlene, this must be so difficult for you and on top of the exhaustion of moving Bill's things out of the Glendale house; take care of yourselves if possible--he will need you as strong as you can be.
--Janet

Sunday Morning Visit

Jessie, Sam and I went to visit Bill Sunday morning.  We got there and he looked to be sleeping peacefully.  After about 30 or 40 minutes Bill stretched and opened his eyes briefly, but didn't make any other movement.  We thought with Sam there,  being he's 2, Bill would wake with the talking, but that didn't happen.  We were there close to an hour with no luck in getting to say HI to Bill.  I'm so sorry it turned out not to be the best day for Bill.  We think of him often and send you all our love and prayers.

Sandy

hi this is Abigail,
I'm visiting again second time today, dad is now in room 6110 ICU west. he has an air face mask on and they are monitoring him. they just did more suctioning. he has been responding and looked at me as soon as i walked in the room. he has been trying to get this very tight mask off with no success. the nurse took the mask off before doing suctioning, and he gave me a big smile. he was fighting with the respiratory specialist i had to hold his hands down, very strong.  he's grimacing at this situation, the air mask is very tight. but he has held and squeezed my hand and i have reassured him he's going to make it through this. i told him he may have pneumonia and he's being given antibiotics for it and this is a breathing treatment. he looked at me in the eyes and listened i  think he understood and i said your going to pull through this, don't worry. i think this helps ease his mind. he's nearly asleep now. i'll go home tonight and come back in the AM and talk to Anne Finkelstine.

"Code Blue" scare

Just before 4p, Bill was taken down for a CT scan. His nurse, Jesslyn and I accompanied him to the second floor where the scans are done. Jesslyn had me wait in the hallway. In ten minutes, one technician rushed out, opening the door. He asked if I heard the overhead announcement for "Code Blue". Just then the announcement came on and within seconds doctors, nurses, and other medical staff started arriving, I knew instinctively that "Code Blue" was for Bill, although I didn't know exactly what the code meant, I knew it meant business. I counted at least 7 M.D., several nurses, nurse supervisors, other technicians, and two security officers--altogether 20. The door was open so I could watch what was going on inside. Within five minutes, the most acute crisis was over and a pulmonologist walked over to me. He said that Bill did not stop breathing but that his oxygen intake did get dangerously low. He told me to go inside and encourage and reassure Bill that he is ok. The radiologist looked at his CT scan and chest X ray (taken earlier in the day) and saw something in the back base of his brains but could not determine exactly what it meant. It could be a stroke but it could not be. They also could not be sure if whatever it was, as shown on the scan, could entirely account for his problems. I told him they should compare it to an earlier CT scan taken about six weeks ago. They said another radiologist would offer a second opinion tomorrow morning and when Bill is more stable, do another scan. An internist gave a synapse of what they'd do--transfer him to an ICU, monitor him carefully while doctors figure out what next step to take.

I really appreciated nurse Jesslyn. She was the one who called code. She said it was a judgment call because his oxygen intake was plummeting, but had not reached a flat line. I thanked her profusedly.

I lost my cell phone last night. I don't know where it is. I checked everywhere, my house, my car, the hospital, even Americana at Brand Mall where I had taken Sophie and Olivia for a movie last night. It is still missing. This is the way my stress manifests..

Bill's new room number: 6110. Nurse station: 323 783-9631.

Then had to leave the hospital in a hurry to pick up the kids.

6.30pm. I just checked with Joe, his nurse. Bill's condition remains about the same. Still very lethargic and unresponsive. I told him to call my mother's cell phone or Abbigail if something were to happen.

It is definitely a bad day.

Update Sunday AM

At the hospital again after dropping off Sophie and Olivia at the movies with a friend of mine. Things are quiet here as Bill is deep in sleep, snoring softly (without any pain or sleep meds, since last night I am told!). The nice nurse tells me that he has been sleeping like this since her shift at 8 am. All his vitals are great and, remarkably even his hands and feet are warm. His doctor saw him twice this morning, attempted to wake him up and talk to him. She found him "lethargic", only able to respond to his name. They ordered a CT scan of his brain, chest X ray, and a course of prophylactic antibiotics. They want to rule out a brain accident, infection and/or pneumonia in his lungs. Hopefully the tests are performed today.

He is not stable for transfer to the nursing home anytime soon, it appears. I am glad he is here at the hospital.

A bad week

Today was my third visit this week and I am afraid it has not been a good week. He has lost some of the gains he made in previous weeks.

1. All through the week his breathing has been belabored occasionally requiring oxygen. A nurse commented that breathing difficulties are common in congestive heart failure patients.

2. He has a hard time clearing his throat and can't quite cough up the phlegm. On occasion it gets bad enough that a respiration therapist suctions it out. This also has made it harder for him to practice ice chip swallowing without chocking. He could only do four ice chips on Thursday and one today. It was very tiring to him. His speech is also impacted: He talked in a hoarse, slurred voice and it was hard to understand him.

3. His mental status has noticeably taken a turn for the worse: Today he could only make a brief weak eye contact with me. He did manage a half smile (not the happy wide smile he usually greets us with) when directed to Sophie and Olivia's presence but soon drifted away. Sophie commented that he was "stuck in a day dream". He had his eye brows furrowed most of the time during our visit today as if in pain. He also appeared anxious and said that he wanted to be taken back to the hospital where he was. I reminded him that he has been in the same hospital for two months. He said he might be dying and asked to see the doctor. We did ask for the doctor but I knew that it would be useless to have the on-call doctor visit. My previous experiences have taught me that the OCD's don't really do much unless the patient is facing an acute, imminent death. The nurse did figure out Bill was worried about his breathing and called in the respiration therapist. The respiration therapist gave Bill an oxygen mask but said this was just to reassure Bill, since his oxygen intake was excellent.

4. Scleroderma symptoms are worse in his toes and at least one toe is beginning to develop a purple-blackish lesion, similar to his fingers. His fingers, arms, toes, and feet are all ice cold. And when I touch his skin, it is as tight and hard as stone. The advance of sceroderma is relentless, it seems to me. Everytime I am there I put on heating pads on his feet and hands trying to warm them but I know it makes little difference. I can't help but remember the doctors telling us that there is not much more they can do to retard its progression. It is hard to take this pronouncement lying down: If they can put man on the moon why cant' they fix him?

When we left him around 8p, he had fallen asleep and finally his face no longer had signs of agony or pain. It seemed as if the oxygen mask did reassure him that he was getting enough oxygen and he could finally fall asleep.

I am trying to have a positive mindset. After all, Bill was on the mend incredulously from multiple organ failures and was on the verge of being discharged to a skilled nursing home. Maybe this week was a temporary setback. He may just manage to pull off another come-back yet...

Good night everyone!

Kris

hello  everyone. i applogize for not writing for days and days. We are moving dad out of his Glendale house. he will go into a nursing/rehab facility after the hospital and then i will rent a smaller place for dad and me to live when we know he's getting out.
Anyway, Sonny, Kris, Elena, Claudia and I have been chipping away at packing, cleaning up and making decisions about Dad's belongings. Lots of work. the last few days my schedule is to make phone calls and faxes connected with his address change and any other business, then i go pack and clean Dad's house, then i go to the hospital. if I'm not totally wiped out i go back to the Glendale house and try to pack or disassemble things there. the nurses keep asking 'where have you been?!' when i get here. we'll be finished with the move soon and i can spend more time at the hospital with him.
He pulled his feeding tube today. yanked it right out. he just got back and he has a fresh tube and he seems much 'happier' right now than the last two days. i said ' dad, they must have you on happy drugs right now' and he smiled and had a silent laugh about it. he's very tired and worn down it seems.
the last few days his food  (or something ) was giving him diarrhea. i asked Anne Finkelstine about it and she got a stool sample and said she'll ask nutrition to find something that will work for him. they have been adjusting his food the last few weeks, trying to find a good combo for him.
he said the pain in his foot and mainly his toes, has switched feet. its his right side, currently.
his cough sounds low and gurgled. he's getting a breathing treatment as needed (nurse  calls specialist in for this). he has alot of mucus always coming up.  i recall reading that many scleroderma sufferers have GERD. talked to Anne Finkelstine about this and she said he's on a medication for this already. she said they are paying attention to his lungs and throat, listening and giving him what he needs as he needs it.

Weekend with Bill and Family

My brother, mother, and myself were welcomed with open arms late Friday night at Arlene's house in Claremont from San Francisco.

When we got to Bill's room on Saturday at about 11 am with Abby, he'd just returned from dialysis and was heavily drugged up on opiate painkillers. He had a hard time staying awake -- I hear that dialysis is exhausting -- and the medications weren't exactly stimulating his perception. Abby assured us that this state was not the norm, and perhaps we should give him some time to rest. We went for tacos, delicious delicious tacos.

When we returned about an hour and a half later, hospital staff had placed him in his chair. The chair is part of the rehab process, and if he can consistently stay in the chair for 3 consecutive hours it'll be a sign that he's ready to move out of the hospital. That said, it's very painful for Bill to sit in the chair: he's not a fan. He wanted to get back into his bed almost immediately, but the nurse asked us to stall him so he could get his full 3 hours in. We played Weird Al songs and danced for him; he loves the Michael Jackson spoof "Eat It!" Still, the fact that he is vociferously complaining about the chair and demanding to be placed back in bed is a good sign that he's got plenty of fight in him.

Also, he was very much aware and bright-eyed when we returned from our taco run. He even tried to trick us into letting him eat some chocolates! He was telling us about his infamous cousin "Cuz" who tried to kill him several times with an axe as a child -- always with the dark humor. Speaking of which, Bill seems to have retained a great sense of humor, though it often veered into the realm of death and murder ("just shoot him" is something we heard often without much indication of whom we were supposed to shoot), which we tried to redirect as best we could. Nurse Ratchet was also a frequent subject of conversation.

One of Bill's former students, Aya, arrived all the way from Japan to visit him (wow!). Bill was so excited to see Aya and just perked right up when he heard that she had arrived. We went for a walk to give them some time to visit. When we got back, Aya was on her way out and Bill was still in the chair but not complaining about it at all.

Kris called and dropped off the girls -- Sophi and Olivia -- for a visit. They are a delight. As soon as the girls entered Bill's room, any pain drained from his face and he was engaging and aware. Bill asked Fitz (my brother) about his current art projects, and Fitz showed him some of his work that is online on his phone. Bill was engaged with Fitz and conscious of and impressed with what he was looking at. This was the most aware and with-it that we'd seen Bill so far. Meanwhile, Sophi and Olivia were busily jumping on Bill's automatically-adjusting hospital bed and watching as it reinflated after they'd depressed part of it with their bouncing.

The girls were getting a little cabin fever, so we got them excited to run out to a patch of grass in a park that you can see from Bill's room so we could wave to him. We ran out to the park (by the Hollyhock House), up several flights of stairs, and waved vigorously toward Bill's window. After rolling down the hill and playing "horse-y" for what seemed like more-than-enough time, we brought the girls back to the hospital all tuckered out. Bill was asleep in bed by then, and when we woke him up he promised that he could in fact see us waving from the park. "I could see Abby's flashing smile."

Sunday morning, we came back to the hospital for a short visit before Fitz, our mom, and I hit the road north. We were a little worried that he wouldn't be very lucid for our last visit, but much to our delight, he was just as present as he'd been the day before when the girls arrived. We talked and joked and told stories that he definitely remembered. He told me that Pomona made a big mistake by rejecting me from undergrad: ha!

I'm now realizing that I've not described Abby's deep devotion to and assistances small and large for Bill. It was truly incredible to watch her as she checked all of his wires and cords and helped him eat his ice chips. Incredible. She has educated herself on his medications and is vigilant about his reactions to them -- she's going to speak to his main physician about overloading on the opiates that are making him too tired and too confused, but she's aware of balancing those needs with the fact that his feet are intensely painful. It is touching to see how she has arranged her life to be there for Bill, and that she seems truly to appreciate the time she gets to spend with him. She plays air guitar and dances and sings for him. I'm proud that she's my cousin.

- William Ryland, nephew.

Hypnotism

This was forwarded from Julianne Flora-Tastado

"From: Shelley Nicholas
Date: March 21, 2011 6:06:37 AM PDT
To: Julianne Flora-Tostado
Subject: Re: Bill invites you to check out Bill Banks Friends

Dearest Julianne
I visited Bill on Friday
Hypnotized him. He didn't stir. I think he is heavily sedated.
I also left three CDs to be played to him as he rests. Will bring much ease to him. I hope they play them. I left them with the nurse. He is a beautiful guy and I feel honored to know him.

Love Shelley"

Bill P: I wonder if the CDs can be loaded on Bill's iPod?

need to do some more research too.  Vit. E is fine at this point for external use only.( It is an anticoagulant when taken internally.) Evening Primrose oil has some unpleasant side effects, so don't think that should be taken right now.

Was wondering if your dad took vitamins/supplements before all this happened. Sometimes there are "sub-clinical" deficiencies...have they done any blood levels for vits.? Just wondering. There is just not a whole lot about supplements and scleroderma!

Take care & give my love to Bill, Mary 

Scleroderma "guru"

I received this note from one of Bill's former graduate students and a good friend of mine (Sara Wyant).

"I have been following Bill Bs blog ... what a saga. The friend I walk with has lived with Scleroderma for about 18 years and goes to lots of conferences. She says that Dan Furst, who is affiliated with the UCLA Scleroderma Center is considered the “guru” and west coast expert on the disease. Thought you might like to pass on that info.
Sara"

Here is one useful link:
http://www.scleroderma.org/medical/r&t_articles/Furst_2001.shtm

-Bill Prinzmetal

So impressed that dad's mind is clear today!
he asked very clear questions to the doctor today about his feeding tube. he was worried its infected,the doc does not think its infected- but they are changing the dressing daily and keeping an eye on it.
we did several ice chips and he's sitting in the cardiac chair right now. its been an hour so far with no complaints( i think they did give him pain meds before they sat him up, he's pretty sleepy now).
William, Fitz and Betsy came to visit. sunny is here!

Friday pm visit

Sophie, Olivia, and I arrived to yelps of "help" by Bill in his room. When I opened the door to the room, Bill was seated in his chair in agony. He said he was stuck in his chair for a long time with no one responding to his yells. The call button did not work, he said, and he tried to yell as loud as he could. I summoned for help and several nurses came right away. They were apologetic and moved him back to his bed. His nurse said that the doctor "ordered" Bill to sit up in a chair for three hours, which he did successfully do. The problem was that they left him unattended longer than that.

The good news is that Bill got very mad and was very articulate about it. He demanded to talk with the charge nurse and complained vigorously to her.

He and the girls had the best visit ever: He was emotionally engaged with them in a way that he has not been so far ("I missed you two so so very much!") and told them he wanted to watch a movie with them. Sophie wanted to crawl into his bed; they eagerly helped him practice ice chips (Olivia delivered ice chips to his mouth, Sophie maneuvered his suction tube, both girls encouraged him to chew and swallow, and put their fingers on his adam's apple to make sure he swallowed). It was amazing that the girls knew exactly how to do swallow exercise with him. They were inquisitive about different tubes and needles and Bill explained what they were. While he was oriented, lucid, and lively, he did still show some cognitive lapses (i.e., couldn't remember if the nurse had given him medicine and asked several times about it).

The girls are all over him. I think they really missed him and are glad to have him back! They want to visit again tomorrow.

When Bill complained of pain, Sophie told him to think about something else to distract himself. Bill asked, "like what?", to which Sophie said, "like your children". It worked of course. They were excellent daddy's helpers.

Hi-
1. had dialysis today.
2. no chair-he really did not want to do this today.
3. we just got the ice chips so we'll see how it goes.
4. new pain med that is applied to the skin in a patch form. they just started him on it today, we'll see if it works at this low dose.
5. thinking clearly today!

Mushrooms

This search was a little disappointing. There’s a lot of info, and some well-controlled studies, on the benefits of various mushroom compounds for inhibiting cancer tumors and boosting the immune system. However, there is nothing substantive on the use of mushroom compounds for scleroderma or for any of the individual symptoms Bill has. My biggest concern is that immune boosting would be counterproductive in Bill’s case. In scleroderma, the body’s immune system is already too strong, causing it to attack itself. Mushroom compounds might only strengthen the attack. So, the critical question: Is immune boosting helpful or harmful in an autoimmune disease?

Maybe Bill’s rheumatologist could answer that question. If immune boosting would not strengthen the attack, then the maitake mushroom (especially the “MD-10 fraction” of it) has strong immune-boosting capacity. Most of the Western tests have been done on mice and in cell cultures, but Japanese physicians use MD-10 on human cancer patients with success.

A few types of mushrooms were listed as “immuno-suppressive.” But these types didn’t show up when I tried to verify their effectiveness. In general, on all these searches, I avoid any website that sells a product, and I try to find peer-reviewed published tests showing that a given idea actually works. Nothing like that appeared for the three (allegedly) immuno-suppressive shrooms.

A few other items showed up along the way that might help: The Scleroderma Foundation has a good list of answers to frequently asked questions at www.scleroderma.org/medical/frequent-questions/frequent-questions.shtm. It also has a table of scleroderma medications, organized by symptom, at www.scleroderma.org/medical/medication.shtm. Finally, there is a Scleroderma Center at UCLA led by Dinesh Khanna, MD: dkhanna@mednet.UCLA.edu. Open research trials for scleroderma treatment at this center are listed at http://www.scleroderma.org/medical/centers_ca.shtm.

Sorry the mushrooms didn’t pan out.    --Janet

WoW Janet! thank you! i need to spend some hours looking through this info. my goodness!! thanks.

Dad has been napping most of the day. Kris and i are going to look at 2 more nursing homes this afternoon, both in LA.
insurance is  covering his transport for two weeks after being let out of the hospital. i called the college department that handles health ins. and they are going to get back to me about further coverage and equipment for home care coverage. Kris talked to Kathy Parker and Adriana faxed the info to foothill rehab, but it might not work for him because he's required to be in a single room, risk of infecting others. so we hope one of these places can take him and then transfer him to foothill when they have an open single room.

the next two weekends are very busy for me and i will have a hard time getting here. we are packing up dad's house this weekend in Glendale, putting most things in storage and having a yard sale next weekend. then my friend Tim will be here with my truck full of all my stuff from VT and i'll bring him to LAX. lots to do. so if you're visiting, stay longer over the weekends if you possibly can!
thanks much.

Alternative Medicine for Scleroderma

Hope I don’t wear out your eyes with this one! I found info from several sources, but the best was “Natural Remedies for Scleroderma” by Alan R. Gaby, MD, published in the peer-reviewed journal Alternative Medicine Review in 2006. You can read the full text at http://www.altmedrev.com/thorne/index.php?sobi2Search=Natural+Remedies+for+Scleroderma&search=Search&searchphrase=any&excludeCat=293&option=com_sobi2&sobiCid=0&sobi2Task=search&reset=2&Itemid=70.

One problem with research on scleroderma treatments (standard or alternative) is that the disease is rare. It’s hard to find enough patients to run a good study. Another problem is that scleroderma symptoms float across many different diseases (like lupus, for example). Finally, mysterious diseases attract the worst of alternative medicine, so we have to be cautious. There is no cure for scleroderma, but there are treatments for the disease and its symptoms.

1. Meditation – Jon Kabat-Zinn Ph.D., at the University of Massachusetts Medical Center, has conducted decades of well-controlled studies showing that body-scan meditation relieves pain. For example, one study randomly assigned pain patients to 10 weeks of standard pain clinic treatment or to body-scan meditation. The meditators showed 36% pain improvement compared to 0% in nonmeditators; 87% mood improvement compared to 2% in nonmeditators; and 77% distress improvement compared to 11% in nonmeditators. The program uses a very specific technique, building gradually to 45 minutes a day. Bill can do it in his hospital room, starting any time.

He can learn more about Kabat-Zinn’s program from a story on (his favorite!) NPR: “Meditation a Hit for Pain Management” broadcast on March 1, 2007, http://www.npr.org/templates/story/story.php?storyId=7654964. The story includes a sample 8-minute guided body scan meditation to try for a few days. If it’s helpful, Kabat-Zinn has an audiobook and four guided meditations at http://www.amazon.com/Mindfulness-Meditation-Pain-Relief-Reclaiming/dp/1591797403/ref=pd_sim_b_5. Most people have to practice daily for a week or two before they begin to feel the effects.

2. Stretching – Simple stretches of any part of the body, even just fingers and toes, can relieve pain, improve circulation, encourage relaxation, and counteract skin tightening. Heating up a body part before stretching it will increase the range of motion.

3. D-penicillamine: This is a by-product of penicillin, with brand names Artamin, Artin, or Cilamin. It can’t be taken with drugs that suppress the immune system, but perhaps Bill will be off those drugs in the future. It has produced improvement in multiple sclerosis, certain forms of cirrhosis, and rheumatoid arthritis, and is sometimes prescribed for scleroderma. Adverse effects can occur, so a rheumatologist needs to prescribe and monitor. Can lead to zinc deficiency. http://www.mgwater.com/autoimmune.shtml

http://www.webhealthcentre.com/drugix/D_Penicillamine_DI0052.aspx 

4. Minocycline – long-term antibiotic sometimes used to treat scleroderma. Some medical researchers suspect scleroderma involves an infectious agent, so maybe that’s why D-penicillamine and minocycline are prescribed. I’m not sure. The trouble with this option is that minocycline increases BUN levels, exactly the levels that dialysis is aiming to reduce. The website about this drug says it is not for patients with kidney disease. http://www.drugs.com/pro/minocycline.html.

5. Glucocorticoids – This is a class of steroids like cortisone, prednisone, dexamethasone. Long-term use has significant side effects: immune suppression, weak bones, potential interference with kidney treatment. Bill’s MDs would need to say whether this option is safe for him.

6. Colchicine – This is a drug for gout that reduces uric acid in the body. It is sometimes prescribed for scleroderma, but should not be used with liver or kidney disease. Sounds like a good one to avoid. (Fear Not; better options are coming!)

7. Autologous stem cell transplant – This is extremely experimental and has only been done once or twice for scleroderma in Europe. In highly oversimplified form, they take stem cells from your body while your immune system is strong. Then they kill off your immune system in the hospital. If you survive (sorry, my bias is showing), they inject your stem cells back into you. These stem cells grow into a new immune system. (I fail to grasp the logic here; if the old cells had an autoimmune disease, why wouldn’t the stem cells grown from them have it too?) You can see that I would shout out a big fat “no” on this one. I don’t think Bill’s body is strong enough to withstand it, and I’m not convinced that it’s anything more than fancy snake oil. A bunch of cancer patients were harmed with similar blood marrow transplants in the 1990s. http://www.synnovation.com/sclerodermafaq.html

8. Iloprost, Procardia, or Yohimbine Hydrochloride – Aha! These are “very effective” treatments for Raynaud’s. Iloprost is given by IV over several days, and one side effect is that it improves kidney blood flow. Procardia helps Raynaud’s but often creates esophageal heartburn in scleroderma patients. A supplement called Yohimbine Hydrochloride is effective but doesn’t produce the heartburn. www.synnovation.com/sclerodermafaq

9. Acupuncture – can help Raynaud’s and relieve some pain. It should be done by a licensed acupuncturist with lots of experience and training. There are few disadvantages to trying it.

10. Evening Primrose Oil – This supplement contains a prostaglandin that increases capillary blood flow in Raynaud’s. In one eight-week study, one group of Raynaud’s patients got 2 grams three times daily; the other got a placebo. The group that got evening primrose oil had significantly fewer attacks of Raynaud’s. 

11. PGE-1 – The prostaglandin (called E-1) in evening primrose oil can also be given  intravenously to help Raynaud’s by increasing capillary blood flow.

12. N-Acetylcysteine – Raynaud’s attacks decreased significantly over an 8-week period after five days continuous infusion of this stuff. I don’t know whether it’s an alternative supplement or a pharmaceutical drug, but I can find out if Bill wants to try it.

13. Vitamin E - 200-1200 IU daily can help scleroderma’s thickened tight skin, calcinosis (hard white lumps beneath skin near knees, elbows, fingers), and Raynaud’s. It is also said to inhibit the autoimmune attack process in scleroderma and to inhibit the growth of fibrosis (like they found on Bill’s kidneys), though I didn’t find evidence for this. May be taken orally and also applied to thickened areas of skin. Gaby recommends rubbing Vitamin E onto ulcerated gangrene fingers.

14. Photopheresis – I’m trying to offer info, not opinions, but this one sounds kinda flaky. The idea is to to suppress and break down collagen, which is over-produced in scleroderma. They remove blood through the equivalent of a dialysis machine, bathe certain types of cells in a drug, then expose those cells to ultraviolet light. Once the process is complete, they add the blood cells back into the body. I didn’t see evidence of effectiveness, but must admit I didn’t look too hard on this one.

15. KPAB (potassium para-aminobenzoate) – This is a form of PABA supplement that softens thick hardened tissue (internalor external) and allows it to stretch. Half of 390 scleroderma patients were given 12 grams daily; the other half were given a placebo. The rate of decline in lung function was significantly less in the KPAB group than in the  placebo control group. Five-year survival rates were 89%, compared to 70% in untreated controls. Ten-year survival rates were 77% compared to 57%. This study was done in scleroderma patients who were in the early stages of the disease. Similar studies on people who had lived with scleroderma for an average of 9 years showed no improvement. KPAB can damage the liver and has caused one death, so if Bill tries it, his liver function needs to be monitored. Hypoglycemia is a possible side effect that can be controlled with diet.

16. S-Adenosylmethionine – To improve scleroderma skin problems, this is given intravenously daily for two months, orally thereafter. 10 patients of 15 showed improvement, but there was no control group.

17. Zinc – Many scleroderma patients have a zinc deficiency that can be treated with zinc supplements.

18. Ananase or Bromelain – Another common problem in scleroderma is trouble swallowing and closing or opening the hands fully. This medication helped with both problems, but only in one patient. The source suggested that Ananase is no longer available commercially. Still, I thought it was worth mentioning because of Bill’s swallowing and hand problems. Perhaps it’s available by prescription?

Please remember that supplements can be dangerous and are not tested by the FDA, so it will be important for Bill’s doctors to check for any potential drug/supplement interactions and to monitor his liver and kidney function while he tries them. Mary Clem and other bloggers might have better knowledge of these various options--I'm only reporting what I've found.

Heading out to the forest for the mushroom hunt. Will keep eyes open for Winnie the Pooh. J   --Janet

other good things today-
he sat in the chair for 2 hours. he asked to scoot around alot, moved pillows and he was on Adivan, but did spend 2 hours.
had several ice chips,only choked on one.
we listened to lots of music today. he looks much better after the successful dialysis, again 1900ml of liquid was removed today!
toes still hurt, we are keeping them warm. i am going home a little early today to eat dinner and actually get enough sleep!
looking forward to seeing William, Fitz and Betsey this weekend!

from Mary Clem , Dads cousin:
Wanted to suggest B Complex-this vitamin is excellent for peripheral nerve endings, and is non-toxic because it is water soluble (instead of fat soluble). Do not just pick a single "B"- they work synergistically (sp.?). I have seen it work for diabetic neuropathy beautifully!!

Also, with the Cayce castor oil packs, it is suggested to wrap area in flannel-not any other material. I'm not sure why, but I really believe in this treatment.

I have studied alternative therapies for 25+ years, and wrote a column for our little county newspaper for 5 years. I had not heard about the mushrooms, but do know they are powerful medicine...for many illnesses and conditions.

Good news-- In dialysis today during a 3 hour session they were able to take off 1900ML of liquid off of Dad's body. he looks less bloated as well! the 'tight as a drum' is now a bit looser. thank goodness.they also infused some fresh blood.
Also received the box from Shirley the flannel cotton for the Castor oil treatment for his toes.THANK YOU!
Kris was able to reach Kathy Parker and Kathy is working on the issues brought up yesterday. Awesome!
we will do the cardiac chair and ice chips around 4pm after he has a rest from the  dialysis today.
one funny note he started saying ' poofat' 'poo-fat' several times. and then clarified- Winnie the poo is fat. he went on to say 'oh my goodness all that honey-- that's all he eats!!!  Honey in a big pot with his paws. just terrible for him..fat, unhealthy'. the nurse and i just cracked up.

got a call this AM from Adriana Mendez, case manager utilization management dept. she has been following dad's case. she said he is ready to leave asap. i asked on what grounds? the answer was very unsatisfactory and i jumped in the car and rushed over. i spoke with his MD anne finkelstine, i said why send him out now when he cannot sit up for 3 hours, ( he sat for one hour 15mins and it was tough today) as required for out patients who have dialysis? he'll be sent right back here when they can't treat him. unless they make him suffer and sit in a chair moaning and groaning? i don't think so!
Adriana mendez then proceeded to tell me she had called the foot hill nursing facility, our family's first choice for many reasons, she said she had not heard back from them. i called right after our conversation and admissions coordinator for foothill nursing and rehab center, Vilma Escalante said she had no info on him. she said she should have been faxed over his info so they can see if they can handle him with what they provide there. i promptly called Adriana's cell and asked her to fax his info to foot hill, to get him in line for a bed. (this is upsetting and i feel lied to!) we'll see what happens with that in the next few days.
another conversation i had with Adriana --- she keeps insisting that the transportation to dialysis from the nursing home and back  'is not covered by insurance'. he has a feeding tube, i think that might make the difference. i also looked in the package with all his insurance and found (and pointed out to her!) that its a $50 copayment per trip (its called a nonemergency)if a plan physician determines that your condition requires the use of services that only a licensed ambulance can provide and that the use of other means of transportation would endanger your (his) health. she looked at this and said 'doctors can make orders for anything, doesn't mean it's covered!'
i think it might be time to call Kathy Parker. this is crazy. are they rushing or are they really trying to find him a bed? i know it really stinks to be in the hospital, and when i talked to anne she said the hospital environment is really bad for people and they get exposed to many infectious germs, and he wont get better here-- yes i understand this, but he needs to be ready to leave, water retention really looked at he (has all kinds of stretch marks and is tight as a drum. its not good) and just being able to endure sitting longer. at least a week or two. and we need to get that transport covered. i have heard of $500 dollar a trip rides. and this would be 3x a week ($1,500 a week?!? for several months!yikes!!!!) until he is able (allowed!) to get rides with me driving his car, might take several months!!
ugh
ab

Fluid Retention

I focused more on fluid retention today because it turns out to be a critical issue. This info is from medical journal articles, Mayo Clinic, National Kidney Foundation, and dialysis textbooks. All agree that fluid retention is a major problem in kidney disease. Usually, this is because unhospitalized kidney patients eat too many salty foods, but Bill’s diet is completely controlled. The recommended amount of sodium for an advanced kidney disease patient is less than 5 grams daily. Bill’s tube feeding solution should follow this limit.

Excess fluid needs to be removed from the kidney patient’s body because it can harm the heart and lungs, leading to congestive heart failure or pulmonary edema. Typically, an unhospitalized person on dialysis will gain roughly 1.5 kg (a little over 3 pounds) of body fluid between each dialysis session. Dialysis should remove all of this excess fluid. If the body produces more than this amount between sessions while sodium and fluid intake are held constant, then something is wrong. Many factors could play a role, including blood pressure changes, effects of various medications, an abnormal reaction to increased calories, other medical problems—the list seemed endless.

Sometimes, people’s bodies produce normal amounts of fluid between dialysis sessions, but the dialysis itself does not remove enough of that fluid. It then builds up gradually. One potential cause of this is that the blood flow is not strong enough to be cleansed fully when it runs through the dialysis filtering membrane. There are a lot of common tests that can help tell the docs what’s going wrong. For example, they can draw Bill’s blood before and after dialysis, then compare blood urea nitrogen (BUN) levels to see whether the dialysis removes enough urea. They can compare tube feeding fluid intake to the amount of liquid removed. Creatinine levels will help. Sounds like they’re already doing many tests.

They can also compare his weight before and after dialysis to see how much fluid has been removed. This “dry weight” determination is most accurate if done repeatedly over several dialysis sessions. The National Kidney Foundation recommends keeping a log that shows wet weight, dry weight, blood pressure, blood volume, etc. for every session of dialysis.

All of the sources emphasize that fluid retention must be treated. There are several possible treatments:

1. Diuretic drugs can be given, but they will lower blood pressure and Bill’s is already low. Apparently, many kidney patients are on diuretics, so he’s probably already taking these.
2. If diuretics don’t work, ultrafiltration is needed in addition to regular dialysis. Ultrafiltration is a process of suctioning blood through the dialysis machine; the added pressure allows more excess fluid to be taken out of the blood. It’s done at the same time as regular dialysis. A 2009 study of 34,000 kidney patients says that “removal of fluid during the dialysis treatment, also known as ultrafiltration, is the cornerstone of volume management in advanced-stage chronic kidney disease… and offers a fast and effective alternative to medical [drug-based?] therapy.”
3. Increasing the amount of time in each session of dialysis will clean the blood more thoroughly. This helps if blood is flowing from the body too slowly.
4. The solution (“dialysate”) that is run through the dialysis machine can be altered by Bill’s physicians to match his needs, as shown in his blood tests.

Blood pressure is an obstacle. Fluid retention raises blood pressure, but Bill’s medications and dialysis treatments lower it, and ultrafiltration will lower it further. (We hear a lot about the dangers of high bp, but bp can be dangerously low, too.) Because Bill’s blood pressure is already low, his physicians will have to take care in deciding how aggressive to be. Maybe they can alter his blood pressure meds just enough to accommodate the additional decrease during ultrafiltration? I don't know. The National Kidney Foundation recommends monitoring blood pressure and blood volume during dialysis and using ultrafiltration with every dialysis treatment whenever fluid retention is an issue. Maybe Kaiser is already doing these things.    

Mushrooms tomorrow!

--Janet

Sources:

www.ncbi.nim.nih.gov/pmc/articles/PMC2773290

www.kidney.org/professionals/kdoqi/guideline_uphd_pd_va/hd_guide5.htm

www.mayoclinic.com/health/hemodialysis/MY00281

www.mayoclinic.com/health/kidney-failure/DS00280

www.emedicine.medscape.com/article/984496

www.ajcn.org/content/74/1/6.full

www.kidney.niddk.nih.gov/kudiseases/pubs/hemodialysis

Textbook of Medical-Surgical Nursing, Smeltzer et al., p. 1333

Replacement of Renal Function by Dialysis, Maher, p. 793

Ultrafiltration

I'm on the hunt, but found two ideas worth mentioning now, both from recent medical journals: 1) Diuretic drugs can relieve fluid retention. 2) If diuretics aren't working, ultrafiltration is recommended. Ultrafiltration is an extra process that can be done during dialysis to remove excess fluid from the body. It removes dangerous fluids that stress lungs and heart, and it allows measurement of Bill's "dry weight". Basically, they weigh him before and after ultrafiltration. The difference reflects his weight without all the excess fluid, which will give you a better idea of how much "true" weight he has gained over the past couple of weeks.

Much more to come.
Janet

I don't know anything about alternative medicine for scleroderma--and have to admit skepticism about  mushrooms--but I will look for info and evidence of effectiveness. Might take longer than usual for this hunt.
Sounds like the docs are on the fluid retention issue. One of the previous articles on IV feeding during dialysis says that "usual indices of nutritional assessment--body weight...etc.--may be inaccurate in patients with end-stage renal disease, as the results are often skewed by fluid retention." ("End-stage" only means the patient is likely to need dialysis consistently in the future.) Still, 61.2 kg = 135 pounds, so Bill is apparently gaining some real weight in addition to the fluid. I'll see if I can find any general info about why fluid retention is common in dialysis patients.

Congratulations to Bill on the full hour in a chair! It must have been so hard to do. Hope the hypnotist and pain team can help with the toe pain.
--Janet

Shelley Stockwell Nicholas will come on Friday. suggests the doctor or ombudsman be asked for referral to Kaiser's excellent Pain Teambe asked

Alternative Medicine. Dad wants to look into mushrooms and things like this as treatment combined with what his Kaiser doctors prescribe for scleroderma. I have heard of cancer patients who this has worked for. Anyone out there know about this type of thing?
thank you,
Abby

blood pressure , water retention, toes, swallowing.
he swallowed at least 10 ice chips today with no problem!
his toes are still very painful and we have been keeping them warm and putting Castor oil on them.
his blood pressure has been very low so his dialysis had to be cut short, so lots of water has stayed in his body.
they are also trying to figure out why else his body is holding so much water. he is very bloated currently.

http://www.earthclinic.com/Remedies/castor_oil.html

i went to rite aid and got some Castor oil today. lets see if it helps!
ab

I wonder, Abby, if Bill or you have thought of any alternative med to warm those toes. I see that transdermal
magnesium has been helpful in reducing the pain and symptoms of Raynaulds - it gets into the internal toe, rather than surface.

Also I have used Edgar Casey's Castor Oil packs for years with success as it, too, gets down in the tissue. This you can make yourself or
buy/order one.

Wish I could help you more.
Give Bill a hug.
Love,
Shirley

Congratulations Eve and Arne!!
very great news!! dad smiled and saw the photo!!

We stayed up until 4am, dads toes were hurting tremendously badly. He also pulled his IV out and it took 2.5 hours to get another vein to take the needle. 3 nurses were working away on him starting at 1am. one vein finally worked. exhausting.

Dr Finkelstine did change his food, and has adjusted it for his low sodium. She is monitoring his nutrition. 61.2 kg today
Dr. Finkelstine is very concerned about his toes. a specialist came into listen to his heart beat in his feet. he will report his findings to his boss and they will discuss what to do. so far they don't think he's a good candidate for foot surgery because of his other problems.  his pain is extreme today in his toes. i need to request the rheumatologist to come and look at his toes again.

he sat up in a regular chair for an hour today. it was very difficult. we will practice on the cardiac chair over the weekend.
speech therapy came by and practiced ice chips and he swallowed maybe 3. he is very distressed because of his toes, and that makes everything else more difficult.
abby

Baby is here

Hi Abby and Kris,
If you get a chance to see this post, please let Bill know that Arne and I delivered our baby. We will try to come down and visit Bill as soon as we are able to travel. The baby says Hello!

"Springtime in the Rockies"  -- March 9, 2011, looking out the back window. For Bill and anyone on the blog who needs a relaxing moment to smile.    Janet

Added Comment

When I arrived Bill was in the dialysis room, dozing.  His feet were uncovered and cool to the touch; a nurse brought a sheet to cover them when asked.  When he was finally taken back to his room he was still very tired.  He watched with interest a History Channel program about Germany's fall in WW2, but he wasn't able to respond very well when asked questions about matters such as car insurance.
Abigail is good at asking him questions slowly and calmly and she senses when he can handle them.  She's also good at understanding what he's saying.  Although his voice is coming back it is still weak.  Arlene

Yes Bill has been getting low dosages of two blood pressure medications s

Abby here,
I was in and out of the hospital today. Dad had dialysis today, and the physical therapist had him sit up in a regular chair for a few mins and we will try again tomorrow around 10:30am. The PT wants me to be there to help encourage him. Besides this, Dad was napping most of the day, and now is awake watching late night talk shows. He's faintly laughing at the jokes and paying attention. He has not complained about his toes too much tonight. pain not intense as yesterday, i guess. maybe too tired to complain.
the nutritionist came by today and remarked that some of his weight gain may be due to water his body is holding. Its possible the bed is not metering correctly, or its correct, but i am worried he's holding too much water.. His weight today was much more. his sodium levels are high, i will talk to Ann Finkelstin tomorrow about all of this.

Thanks for the input on  the Lupus drug!

Benlysta; Raynaud's

I saw the same annoying fine print Julie did about the new lupus drug, Benlysta: "Use is not recommended for patients with lupus that has caused severe kidney... problems."

Here's a little general info that might help: Lupus and Scleroderma are both auto-immune diseases in which the body attacks itself, but it looks like other similarities are only surface. Scleroderma attacks mostly skin and connective tissue, and from what I've found, the worst damage results from attacks on connective tissues that  surround or are inside the body's organs. Lupus tends to attack joints and bones. Raynaud's (the red/purple/white cold toes and fingers) often occurs with scleroderma, but not with lupus. Both lupus and scleroderma can result in organ damage, but for rather different reasons, I think. There are certain drugs recommended for scleroderma: www.mayoclinic.com/health/scleroderma/DS00362/DSECTION=treatments-and-drugs.
These include blood pressure drugs that dilate the blood vessels (which also helps for Raynaud's and kidney problems) and drugs that suppress the immune system. Bill is already on the latter; what about the former?

Raynaud's disease is caused by spasms in the blood vessels. I happen to have it myself. The toes and fingers turn white, red, and/or purple for no apparent reason. It affects each digit separately, sometimes creating a kind of "rainbow" effect. For example, a given foot will have one bright red toe, one purple toe, a white toe or two, and maybe one of normal color. At other times, all toes or fingers will be that blue/purple color. Can be painful; heat helps for long-term relief but creates painful short-term tingling or burning sensations while warming occurs. For further info on symptoms, see www.mayoclinic.com/health/raynauds-disease/DS00433/DSECTION=symptoms.

There are several drugs that can help Raynauds, and some to avoid that can worsen it. These are described, with specific drug names, at www.mayoclinic.com/health/raynauds-disease/DS00433/DSECTION=treatments-and-drugs. In general, helpful drugs open the blood vessels wider. I don't know if Bill is already on any of these. Given the number of drugs he's already on, it would be important that the Raynaud's medication doesn't counteract or interact dangerously with any of them. Xanax is not listed for Raynaud's, but it might help relieve the pain? When Raynaud's flares up for me, it helps to soak the affected hand or foot in a pan of very hot water for 15 minutes, dry it, then cover with electric blankets. The rainbow discoloration often increases during the first few minutes of hot water soak, but that doesn't seem to cause any harm. Water needs to be very hot, but test the temperature yourself to be sure it's safe, because Bill might have some nerve damage in the hands and feet that would prevent him from sensing the temperature accurately.

Thanks for sharing the good news of cardiac chair progress, more swallowing, feeling alert, continued weight gain!

Best to all,
Janet

new drug does not sound like a match for Bill

The small print is such a downer -- the new medication is not recommended for people who have severe kidney damage and it is also associated with more frequent death and infection than placebo. I think money is not the best motivation for medication development.

I'm delighted to hear Bill is enjoying visits more.
greetings,
Julie

Great visit with Sophie and Olivia

At Bill's and the children's mutual request, I brought Sophie and Olivia over this evening after their art class. It was so far the best visit since Bill's hospitalization; this made me very very hopeful that things just might return to 'normal'. Over an hour, Bill listened to them singing, commented on how pretty Olivia's dress was (a pink Chinese style top and tutu skirt she put on for daddy), cracked jokes with Sophie. The children both helped Bill practice ice chip swallowing by feeling his adam's apple go up and down (as a confirmation of the swallow) and seemed proud of their dad. Bill seemed happy.

Abby showed the kids flowers Andrea sent from Hong Kong and they were delighted, going "ooh and ah". Abby let them choose few flowers to take home in a paper cup.

Also, Bill had sit up in his cardiac chair for one hour today, which is longest record up to date.
He practiced his swallowing several times today both with the speech therapist and with us. He seemed very motivated to do these things.

Abby and I also had meaningful conversations with him about practical things like what to do with his house. He said he was sad but felt it was a good idea to close it up.

The only thing: His toes are not doing very well. Bill has a lot of pain in them and he requested Xanax (rather than morphine), which we relayed to the nurse. Abby had the bright idea of getting electric blankets for his feet/toes and on the way to the hospital I bought two., one for each foot. They were not a perfect solution to warm his feet, but better than hot towels.

The girls were told that Bill needed to be able to sit up in the chair for three hours before going to the rehab. They immediately told him to practice sitting up!

And I will definitely bring up the new Lupus drug to the doctors tomorrow!! Thanks, Abby.

Kris

http://www.reuters.com/article/2011/03/10/us-humangenome-lupus-idUSTRE7287JY20110310?feedType=RSS&feedName=topNews

New drug for Lupus in the news today. the symptoms of scleroderma sounds remarkably similar to Lupus. wondering if it would work for him? any thoughts or research on this?

BTW today was a really good day!! swallowing several ice chips, awake and aware. most of his pain is in his toes, and they are prescribing him another medication for it, and keeping them warm seems to help the blood flow and pain.

thanks for the letters  Janet,  Jud and Betsy,  and all the way from Belize, is it Donna (sorry if i got your name wrong!)
THANK YOU!! letters are awesome!!

Wed visit

So I am here at the hospital. I realize that Bill has been in the hospital nearly 50 days. They put in a permanent port near his right collarbone for dialysis. They believe Bill may need ongoing dialysis for a foreseeable future. He was asleep when I first got here but has been awake and alert for the last couple of hours. I am heartened by his stronger voice, but his toes are not doing so well: They are icy cold even in a warm room (75 degrees) and are purple-bluish. He complains of them hurting and asks us to massage them. I am worried that they might go the way of the fingers (dry ganglion). The scleroderma must be acting up.

Mental-status-wise, he is actually more lucid and alert than I have ever seen him be. He makes sense, asks cogent questions, signed some documents he needed to sign, and generally seemed aware of his environment.

His bacteremia has been clear for more than a week, which is also a great news. They want him on antibiotics for another five to six weeks just to eradicate bacteria completely.

We are told by doctors that as soon as he is able to sit up comfortably in a chair for three hours, he could be transferred to rehab center. We explained this situation and Bill wanted to sit up in hi cardiac chair!! We are waiting for his nurses to arrive to transfer him to the chair.

Bye for now

Kris

thanks Julianne-- so higher ups at Pomona changed dad's password and i was able to find Aya's e-mail (she had written him worried because he had not responded and she did not know his number or current address) so i e-mail Aya(hello! if you are reading this!) and that is just wonderful.

also, on the calories, not to worry, i put that image in as an exaggeration.  he's still very skinny looking, but is absorbing what they are feeding him, thankfully.
OK, i must go to bed!

i need a 9 volt battery. and if the phone rings, i dont answer it

this is what Dad said to Gilda (night nurse...very good one as well) and me tonight when everything was beeping and her intercom was dinging and everything. this made us laugh!

today the speech therapist gave him a few ice chips and told dad she believes he will swallow again. dad said, 'what are you, a motivational speaker?!' this was funny. he sat in the cardiac chair for an hour, but he was mostly leaned way back, and it took awhile for the lift team to come back and put him back on the bed.

he did dialysis today. he is on a three times a week schedule.

his feet keep getting very cold or hot (the blood flow problem) and i got him a new heating blanket by requesting it from the new doc Anne Finkelstin.
 i warmed up his feet using towels that i soaked in very warm water and wrang out, and pressed them on his feet over and over. his toes were purple and i got them back to a normal pinkish color. he has a few purple spots.

the last few days he has been napping during the day quite alot.

his weight was the same today and we did get a chance to check if the bed starts at zero. it does. hopefully it's reading correctly.

when he's awake he's cracking jokes here and there. sometimes get nausea, and complains of pain less and less everyday it seems. sometimes he's very confused. he coughs up alot of flem.he has been sleeping a lot during the day.

so things are about the same as yesterday.
Andrea Chung sent beautiful flowers! she's in Hong Kong!!! thanks much!!!

Hi this is Abigail here. dr Mckinney stopped in and answered some questions.
1. the blood infection is still clear as of 2/27. so they don't think there will be further invasive tests. he has to finish his course of anti-biotic.
2. he is at 56kg! !  good news, hope the bed weight is correct. the nurse (Melissa again, who is really great) suggested that we test the bed accuracy by having it weigh the bed while he's on the cardiac chair. hope it's correct.

56 kilograms = 123.458867 pounds

3. new doctors on starting later today: Anne Finkelstin (replacing McKinney) 

attending for 2 weeks = Dr. Vigil 

after that , two weeks later= attending Dr.Su

 sorry this is in BOLD, i couldn't get this to stop being in bold!!

 

Surely someone at Pomona could talk to the computer people there and get Bill's email password for Abigail - assuming he wants us to......

mailing/visiting address

william p banks
patient- room 7787
kaiser los angeles medical center
4867 sunset blvd
los angeles, ca
90027-5969

mailing/visiting address

Aya--if you're reading this, Dad wanted to contact you he said you might be visiting, and that you live in Japan. i can't get into his e-mail (password)  so write me if you get this:
abbybanksisalive@gmail.com
anyone else that has Aya's contact, please let her know we are asking for her. thanks!

we are watching films on AMC and USA, today.

yes, his feet and legs are still an issue. i'm trying to help him, taking socks and boots off/putting back on. adding cream, moving them.

nurse today is melissa, and she is very nice and helpful. she would be another to request again as well.

Julianne- thanks for the ear plugs!!  dads were on the floor this AM but i can request some for him again.
all for now,
ab

a few details for any other beginners like me

Here are a few details that might help any other beginners who want to try to be helpful when Abby can not be there --


hot water blanket - kaput for the day

While helping Bill get back into bed the team noticed a quarter inch of water on the floor. This in a room with mulitple cords and outlets. The warm water pump for the 'hot water bottle' style blanket had leaked most of it's water out. Earlier, when we one of the male aides to help us turn it on, he added water. When it leaked, the traveling nurse wondered if it had been overfilled. Perhaps in moving cords and blankets, sheets and equipment out of the way something was stepped on or bent or nudged open - we don't know. A towel did not adequately remove all the water, but at 7pm the traveling nurse didn't know who she could call for help with water on the floor.


glove and gown - dialysis room

When I arrived, Bill was already downstairs in dialysis - I just walked in and held his hands, rubbed his feet, etc. No one asked me to gown up. Once back at the room I realized we were still supposed to gown and glove. When at dialysis I figured glove and gown had been set aside because his infection was over. Sorry. Please ask for glove and gown when you visit Bill, even if no one asks you to. It is to protect him from whatever may be on your clothes or skin. These have to be taken off each time we leave the room and new ones put on each time we come back in.


foot rub - let him show you want to do

At first holding his feet and rubbing with cream seemed to be helpful, but then I'd try to squeeze as he would raise his hands and make a squeezing motion in an effort to show me what he wanted. I could tell that sometimes I was doing it the wrong way - he'd wince! So I asked Bill to show me what he wanted. He held my hand and rubbed gently, slowly, up and back on each finger below the knuckle. Not too light to cause a tickle, but not strong or heavy. Gentle, kind, patient man.

I wished I'd asked Bill to show me what to do first. He figures that the foot rub is helpful to counteract what he feels as hot, dull pain in his feet, "It's probably neuralgia". Later he asked me to try rubbing ice on his feet, then blowing on the skin. I thought was counter-intuitive, but he said it felt good; "The nerves are confused." After that, just holding with warm hands felt best.


perceptual issues -

When in the cardiac chair, Bill had a sensation of falling - he was certain that he was going to fall out, and that he was already slipping. But he was not moving. Later we discussed how Oliver Sacs had noted during his bedrest (after he'd injured his leg hiking).. that his initial attempts to put foot to floor were plagued by mistaken perceptions of distance that constantly shifted in a dizzying bounce. Lack of proprioceptive feedback led to multiple perceptual difficulties. Bill nodded, smiled, opened his eye wide, raised his eyebrows, and mouthed, "Yes, Maybe so!"


fear

The velcro strap for his legs was in the wrong position so that the buckle was digging into his knee - the visiting nurse figured out it was too tight and released it. That felt better, but then the overall pain and sensation of slipping out, plus his natural fear of falling, "Catch me!", led to nausea. She ran for medicine for that - which gratefully worked instantly. I had that girl running all over for Bill.


ask before they leave - how to reposition the cardiac chair

Then I had to run for the head nurse to show both the traveling nurse and me how to help him sit back part way. He felt instantly better. 'Should we have a longer sit here at this angle, or move (back to bed) now?' Bill seemed to be so relieved he didn't mind either way. After 35 minutes I'd had it. And I didn't want to risk their leaving again. We helped him back onto fresh sheets, back into socks, calf cuffs, moon boots and left hand brace. He was ready for some sleep - so I tucked him in while playing James Taylor, "You've got a friend" on his iHome/iPod, put in his earplugs and left. Bill's angelic smile helped.


How to find the head nurse

If you walk past the nursing station, and continue around the corner a bit - as if you are headed toward the elevators, keep your eyes open to your right.. there is a little closet-sized alcove where the head nurse inputs her progress notes and billing.

Julianne

Dear Abby -- re: Kaiser Web health manager and ACCESS

Oh Abby, I had the easy day today.

I remember visiting potential facilities when my mother needed care for Alzheimer's. Never an easy day for anyone. I'm so glad that you found one that is a good match for Bill's needs... and yours, too. You must take good care of yourself.. for the long haul!

My mentor, Dorothy Smith, was in Claremont. She was confined to a motorized wheelchair and had to use the ACCESS handicapped bus to shop or visit friends or go to medical appointments. At that point in her life she was too weak to stand up out of the wheelchair and pivot to sit down in a car -- or vice versa.

I hope that the facility you liked offers use of an ambulance style station wagon for transportation to the Kaiser dialysis facility. That would allow him to rest back and forth, but I have a hunch that the plan to release him after he can "sit for three hours" has to do with being able to survive transportation back and forth to dialysis.

Those ACCESS busses only cost a dollar or two per ride, which is great - however - even if appointments are made way ahead, sometimes the dispatcher needs to be reminded again on the day of the appointment.

Once Dorothy used ACCESS to go to a tea party in Claremont. After the party Dorothy told her friend she was fine waiting alone; the bus would be there any minute. But instead they had forgotten her trip was to be a round trip. She didn't have a cell phone and was not strong enough to yell for her friends to hear, and she couldn't negotiate the stairs back up to their home. After two hours she ended up taking her little motorized chair along the side walk toward Claremont to a business with a ramp so that she could phone ACCESS.

Maybe there is such a thing as a wheelchair that could allow Bill to lie down if he ever needs to wait too long.

While in the cardiac chair, it helped to remind him to exhale fully before breathing in. He tended to pant from pain. Hyperventilation led to feeling he could not breathe. Bill Prinzmetal's blog was very helpful for me.. I knew to go looking for the nurses early and far and wide -- to make sure he got help to get out of the cardiac chair.

By the way, a traveling nurse was assigned to Bill today -- and Henry was assigned two doors down. He seemed to delighted to see me again- as if he wished he'd been assigned to Bill. The nurse was lovely, but she hadn't seen a cardiac chair before, so she asked the head nurse help and that lady was clueless, slaming Bill into perpendicular position immediately upon putting him in the chair. I exclaimed that you had helped him get into position slowly, but then my attention was on helping him breathe- and they disappeared. (Maybe you can ask the Ombudswoman about that shift assignment on Saturday?)

I left you a note on the door to the bathroom, and some little ear plugs. I gave ear plugs to Bill, too, as I left. He thought that sounded like a good idea....

My note is about the Kaiser on-line "my health manager" web site that allows family to email doctors directly and to view lab results immediately, if patients just sign a request that family have access. Please ask a Social Worker assigned to Bill, or someone from Member Services, to help Bill get a password, etc., and a permission blank allowing you access to his medical record. It's one of the best things about Kaiser Permanente.

I won't be able to visit again until April, so I'll check the blog to keep up to date

Peace,
Julianne

visited convalescent homes

Hi this is Abigail,
My mom and i visited three nursing / convalescent homes.
i'll start with my favorite and end with my least favorite.

1. Foothill Nursing and Rehabilitation center 401 west Ada ave, Glendora,ca 91741 626 335 9810
this was in my opinion the best. first off its 1 mile from a dialysis center. the waiting room was much like a middle-upper hotel. feels like a nice hotel. it was newish and clean. fake and real wood everywhere made it less depressing. fresh flowers in the dining hall. the whole place was well lit and did not smell weird at all.very helpful staff gave us a tour and answered our questions. dining room was nice. this place is for short term patients like my dad, and so there are not permanent residents. the activity board looked OK. they said they have activity for people who have to stay in their rooms. meals looked OK. 2 to 3 people per room.  the rehab room looked clean and roomy. standard equipment. patients did not have much from home in the rooms, all rooms looked identical. they have in house kaiser nurses and doctors, have meetings weekly just pertaining to kaiser patients. Kaiser has an office in the building next to the nurse station on the 3rd floor, so getting answers about anything kaiser related will be much eaiser. easy to drive there too, road not super busy. this one seemed the best all around, plus seemed more appropriate for Dad. not all geriatric people there.

2. El Encanto Convalescent 555 S. Encanto rd. city of industry,ca 91754 626 336 1274
this nursing home was in an industral area of the city. the staff was really friendly. easy for patients to get outside, lots of little courtyards, and across from a park. they gave us a tour and answered all our questions. the rooms have only 2 people each.  this place houses people with developmental problems, and long term patients as well as short term all in separate sections, and we liked that. it was dark and kinda dingy , the least clean looking place. carpet floors and dirty doors. lots of folks in wheel chairs in the halls just hanging out. although that seemed very soical and a bit liberating. patients hanging out in the shade in the courtyards. lots of big and low windows in the rooms was also nice. staff was very nice and engaged with patients. seemed like they get them outside and into activity, i liked that alot too.  loses points for Dad because its little big grubby, and very much full of long term people who live there. friendly place that felt like a public school, but definitely a second choice based on everything else.


3. Santa Teresita Manor, 819 Buena Vista st. Duarte, ca 91010. 626 359 3243.
Knowing that Dad has never been religious, this place will not fly. The Manor sits on a campus that included a Catholic church, lots of statues of Catholic icons, crosses everywhere and Nuns. in fact there was a room full of Nun's as patients wearing their habits. When we arrived we did not see anybody around, then found the head nurse. she needed to call her supervisor to give a tour, this was going to be 'sister' something or other indicating the top dog was a Nun as well. she was not available, so we gave  ourselves a tour. the halls were clean, floors clean, not over crowed, people were watching a Marlen Brando film in a cafeteria. seemed roomy. each patient room was painted differently, and had lots of stuff from home, and crosses in every room. the activity schedule was just like the other two places, except MASS every morning, under lined.  other religious activities daily, also under lined. i am sure they have prayer before meals and such in the dining area. it was clean, friendly, but this is not the place for Dad. as we left through a courtyard past huge statue of Mary and child, past the metal guard rails made of crosses, i noticed a Nun in full on traditional regalia staring at us from the other side of the yard, at a distance, and i actually got the chills.

Friday (Bill Prinzmetal)

Bill Prinzmetal

Friday was a very good day for Bill and a not so good. I arrived about 10:00. Bill looked better than when I visited last (about 2 weeks ago). He looked like he put on some weight and just looked better.

Bill was napping when I arrived. We visited some and his speech was much improved. He read some of the cards on the wall. He has some ice and swallowed without me saying anything. We did some of the exercises on the wall. Then it seemed like a train on activity started.

First the speech therapist came. She worked on swallowing and gave 3 ½ teaspoons of applesauce! He swallowed. She told me that he has 1 teaspoon yesterday. She had him say ahhhhh and he was much louder than before.

The nurse came in and said it was time for the cardio-chair. After 20 minutes Bill indicated he was in pain (uncomfortable?) and I rang the nurse. It took me about 10 minutes to get her. I ended standing at the door and asking loudly. She adjusted the chair and after about ~10 more minutes, Bill indicated he had enough. It seemed like it took me forever to get someone to get Bill back in bed. He may have been in the chair for 45 minutes; that was too long. It clearly sapped his energy. I felt pretty powerless.

In the early afternoon, his original rheumatologist came in (I forgot his name). He was shaken at seeing Bill in his condition. He had not seen Bill since before hospitalization. He clearly had recently read Bill’s chart. The doctor was moved. He told Bill if he (the doctor) had done a better job, maybe this wouldn’t have happened. He promised to visit Bill every day (weekday). The doctor noticed that Bill’s feet were really cold and he ordered socks put on.

Bill’s feet hurt and I spend about an hour rubbing them. Bill fell asleep, and I left around 3:15.
It would be good to do more of the exercises on the wall, leg moves etc., and he likes to do them.

I somehow kept on thinking about this picture (above), so I looked it up in a scrapbook when I got home. I think it was about 1975. Josh wanted to be in the 4th of July Parade in Claremont, but he couldn’t pedal his bike in anything but flat or downhill. So Bill went along and pushed him the whole way.

This is Mac. I was able to visit with Bill this week. If love, brains, and dedicated support systems will have any effect then Bill has a shot of making it through this terrible thing. It looks to me like he has the best that can be offered. Abby is an angel - at his side constantly with such loving attention - but she is going to need as much help as possible. Arlene, Kris, and many others who I did not meet are all working hard - and Bill is certainly responsive to these efforts.

Seeing Bill for the first time is a bit of a shock. He's lost weight - from 145 to about 100 - and, of course, is very sick; so don't be surprised. He sleeps and dozes frequently, but is very much there when awake. And while he's obviously dismayed at his condition, he retains his good humor and awareness. Talking is an effort and sometimes painful, so communication is difficult. But his great smile is all there, and he easily indicates "yes" or "no".

There was good news this week. He is responding to an increase in his diet, and has gained about five pounds in the past few days. His heart function is back to near-normal. And antibiotics seem to have cleared up his latest infection. He may have had a bit more color in his face when I last saw him on Wednesday. So it feels like possibly he may be on a long slow grind toward a better place.

Where this better place may be remains a mystery. But Abigail is all in to make the trip with him. Whatever anyone can do is helpful - visit, sit, write, ........anything.