OK. I think I am up to this, so...

Monday night, Rory was throwing up from midnight until about 6 AM. Pretty constant. If he swallowed anything, it came back up. Even water. His sugars were having problems, going very low, since he wasn't able to eat. Around 8 AM Tuesday morning, he was hurting a lot, and had 2mg of dilaudid. He went to sleep, and never really woke up. I could rouse him, but only for a few seconds. He would say things that didn't make sense, and then drop back asleep.

David showed up at the hospital, and tried to get his dad to wake up. Rory did say "Hey guy" to David, but dropped back off again.

Around 1:30, we left for a few hours to pick up Diana and for me to get an hour's sleep at home. I did get a little sleep, but woke up around 4:30 PM, and called the hospital to speak with the dialysis nurse who had been with Rory since I left. She told me that Rory had not spoken to her at all (Really odd, since he talks with her a lot normally), and that he really hadn't moved (also really odd). The alarms went off, and I took a quick shower, got dressed and got back to the hospital around 6 PM.

When I got there, Rory was unconscious. Dialysis was just ending, and we gave him Narcan, thinking he might be having problems with the dilaudid. Didn't really make a difference (if you have ever seen Narcan work, people wake up QUICKLY).

I called the house, and asked my brother to bring David and Diana to the hospital NOW. Which he did.

We took him down for a stat head CT, to see if he had any bleeding in his brain, since his INR was very high. Nope. No signs of a brain bleed. He was then taken to the ICU. Once he was settled, I went in for a little while. At one point, I got him to look at me, and aksed him if he was hurting at all. He opened his eyes *really wide*, then closed them again. I can only assume that he was hurting so bad! His BP was too low to really give him anything at that moment for the pain.

When David and Diana came in, he tried to turn over, but his legs didn't seem to be working. We got him on his side, and he seemed much more comfortable. When David, and then Diana, say next to him facing him, he reached out his hand to touch them (these were separate times). He couldn't talk at all. But he looked toward them and touched them. I think he was saying goodbye to them during those moments. After they left around 9:00 PM, he never moved again, or opened his eyes. I spoke to him during the night, and told him I loved him so much, and I thanked him for our wonderful children, and for the last 20 some years together.

I allowed him to be put on a ventilator around 11:00 PM, since he was hardly breathing. He had absolutely no gag reflex at all when they put in the ET tube. And he needed maximum dopamine to keep his blood pressure up to minimums.

He began bleeding from his rectum around this time. His white cell counts were very high, a mark of a major infection. And his liver function tests were very abnormal. And he still had a fever. It was clear to me he was shutting down.

He made it until morning, but his blood pressure was continuing to drop. Several times, none could be found, and his pulses in his wrists were absent. His hands were getting very cold and purple. I called home and talked with Diana, and told her to wake up Steve and have him bring her and David down immediately. She asked me why, and I told her that I was pretty sure he was dying. She told me, "Mom, I am not ready!", and I told her none of us are. They got there pretty quickly.

By 9:00 AM, we decided to stop the dopamine drip. His blood pressure by then was unreadable anyway. He slowly slipped away from us, and at 10:20, he was gone. Each of the kids had a chance before he died to say goodbye, and David spoke to him privately (Diana didn't want to speak privately to him, but did so with us there). I am still struggling to deal with his death, and probably will for a long time. But David, Diana, Steve, and I will help each other to cope and move on.

I want to thank everyone who has been so supportive of our struggle to get Rory reinstated on the sodium thiosulfate, although it never did happen. Thank you again.

At 10:20 AM this morning, Rory passed away. I am at a loss for words right now, but will post again soon.

Last night was rough. Rory was sick all night. Even Zofran (an anti-nausea drug) didn't help. And he may be vomiting up some blood now.

Today has been really hard on Rory. He was hurting so much during dialysis, it took morphine and dilaudid to control it. And now, he is whacked out due to that amount of narcotics he needed. And on top of that, he is spiking a fever of 101-102. That *could* be from the narcotics also, but could also be an infection.

I did go to the appeals committee meeting out in Oakland (100 miles each way). I am not sure how it turned out, since they don't give an answer right then. I do hope that they make the right decision and give Rory the medication he needs. I did hear that there is some sort of meeting here tomorrow about it, and the doctor that gave Rory the drug initially will be there. He did verify that some of the nodules did disappear, and have not returned, which may provide the "objective" evidence that somebody wants. We will have to wait and see. I guess if the answer was going to be no, then they would not have this meeting, but we wait until tomorrow.

Rory is still in a lot of pain. Last night was rough for him, as he needed morphine just to get sleep (get away from the pain). He was dialyzed early this morning, and shortly after starting dialysis, his pain jumped up to 7 out of 10 on the pain scale. So, more morphine. Which knocked him out. Another doctor has us trying capsaicin cream on the calciphylaxis area on his belly (why, we really don't know - it has never been shown to help calciphylaxis pain), and frankly, I am concerned it will harm his skin. But, we are doing it every 4 hours around the clock. It burns like hell, and is only increasing his pain.

We are still trying numerous avenues to get Kaiser to wake up and realize that they are not helping Rory, but are hurting him.

I am going to an appeal meeting this coming Monday (I have to drive all the way to Oakland - more than 100 miles). Why they can't hold these near the patient is beyond me. "Lets just make it as hard as we can for them to represent themselves". At least that is the way it seems.

With greater and greater need for pain control, Rory's HBS doctor increased his fentanyl patch from 50mcg to 75mcg to 100mcg over the past week. Unfortunately, it also caused nausea and vomiting that was unrelenting, and that even high power anti-nausea medications would not help. Thankfully, she backed down the dosage to 50mcg, which stopped the constant vomiting. The down side: Rory is hurting more, and needing more morphine to control pain. He is trying to not use it, but it reaches a point that he can't control it himself and has to use the pain medication (Remember, he did not require narcotics at all while he was getting the sodium thiosulfate).

We really do not understand why his doctors that made this "decision" are not thinking compassionately, why they insist on refusing to give him the one medication that made the biggest difference in helping him to keep a decent level of quality of life. It certainly isn't over the cost, or the side effects (there are none in Rory). They refuse to contact the physicians who are using sodium thiosulfate to treat calciphylaxis. And his nephrologist (who he fired but is stuck with while she is the "on call" nephrologist this week) isn't willing to even learn about this medication to help him.

We did attract attention finally from administration. Dr. Sheffield, the assistant physician-in-chief came to see us yesterday afternoon. He basically told us that the administrative physicians (i.e. him and his boss, Dr. Craig Green), do not make clinical decisions. This "committee" that was formed and met last week included people who, according to Dr. Sheffield, the assistant physician-in-chief at the hospital Rory is at, who were not supposed to make a medical decision (such as the physician-in-chief, who is supposedly only working in an administrative capacity, not involved in clinical decisions, according to Dr. Sheffield). We feel strongly that this meeting that was held last week was not to discuss what is best for Rory, but how they could refuse to give the medication.

Yesterday was "ok". He did need dilaudid to get through the day. Rory's HBS doctor was the one who originally ordered the sodium thiosulfate. He did order another dose, but I think he is afraid to go up against other docs (such as Rory's nephrologist). That's too bad, really. He was the one who saw the improvement in Rory, and saw how well Rory was feeling after getting the medication. Rory did get that one dose, however...

His nephrologist put in his chart that he was not to get the sodium thiosulfate. This is the same nephrologist who said she would not stand in our way. What the heck does she think she is doing now? I spoke with her today (on the phone, btw, not in person). I was amazed at how ignorant she is about all the nephrologists that are using sodium thiosulfate successfully to treat calciphylaxis. I also decided to ask her, since she is an "expert" in treating this, how many patients she has treated. She told me 10. I asked how many successfully. She wouldn't tell me. So, we have no choice but to assume that none of them survived.

So now, Rory is still not going to get it, even though it was clear that the drug is working. Instead, they would rather him be on heavy narcotics forever.

I did get his nephrologist to fax me the "letter" that according to her notes was sent out already (It is dated today). While we are in the process of the appeals procedure with Kaiser, they have up to 14 days to respond. GUYS! WAKE UP! YOU ARE TORTURING MY HUSBAND UNNECESSARILY OVER A DRUG THAT COSTS $20 per dose.

So, I need everyone who reads this to contact everyone in the media you can, contact your congressman and tell them that Kaiser is refusing to use a therapy that is being used all over this country, to treat a condition that is highly fatal. Print out a copy of the flyer we have here. If you are a physician in the State of California (or anywhere else for that matter) that is treating your calciphylaxis patients with sodium thiosulfate, contact me. If you have been treated with it, contact me. I need to find someone to help him immediately!

Rory is back in the hospital today. He could not finish dialysis, due to the pain, and that everytime he flinched, the machine would alarm and stop. He did get most of it, but not all. He is in extreme pain, requiring IV dilaudid as well as the fentanyl patches. It is much, much worse when he is on dialysis. When we got to the E.R. this time, we were treated with the respect and dignity we should have been afforded on Thursday, but were denied.

Rory's calciphylaxis has now spread to his right chest area (in the breast tissue). And it is also starting to hurt. It is spreading around his left side to his back once again. If this isn't proof that the sodium thiosulfate was working until they refused to give it again, I don't what is. He is slowly being killed by doctors that are not caring for the patient, but for Kaiser.

Today Kaiser held their "meeting" (with us specifically not welcome). Although they discussed Rory's care, they refused to let Rory have any say in his care. This violates Kaiser's own signage all over their facilities, which state that patients have a right to

"have impartial access to treatment. You have the right to any medically necessary treatment as prescribed by your Permanente Medical Group or Plan physician that is a covered Health Plan benefit, regardless of your age, race, color, national origin, religion, sex, sexual orientation, cultural background, or physical or mental disability."

By providing him with the medication previously, the medication is a covered Health Plan benefit.

Well, it seems that they are not giving impartial access to treatment. They made a medical decision about Rory without allowing him any say in it, for a treatment that is being used across this country to treat calciphylaxis. And Kaiser keeps saying "experimental". Wrong term, guys. It is OFF-LABEL USE OF AN FDA APPROVED MEDICATION, which the EPA says is used to treat calcinosis (something his docs denied - if the EPA has it documented from the year 2000, then it has been used an additional 4 years beyond that report).

We don't even know who was involved in this decision, except for his nephrologist. We do not know if these people are M.D.'s, what their expertise in calciphylaxis is, if any at all (most physicians don't even know what it is, including the E.R. we saw last night.

So, Kaiser has made the determination to not treat Rory's condition, since it is now obvious that dialysis is doing absolutely nothing to improve this. The sodium thiosulfate was actually working. It had this disease on the run, and had Rory pain free, with the exception of two dialysis days. Now, he is back on fentanyl patches and dilaudid, which isn't controlling is pain very well. ATTENTION KAISER: Isn't the ultimate goal the health and well-being of the patient? Isn't improving a patient's quality of life important? Or is more important to sacrifice a patient rather than admit that you do not know everything?

Please, please reconsider your death sentence for Rory. Writing him off will not end this by any means. He is a patient of yours, he deserves quality medical care, not substandard treatment by uninformed persons. Remember, Kaiser used to be pioneers in medical care, not the backwaters of medical care. Kaiser used to be concerned with the welfare of their patient's, not the bottom line.
===

Rory was taken by ambulance from his dialysis center in extreme pain yesterday. When he got to the E.R., it took more than an hour for them to even get him some pain control, which is in my mind, improper care. All because he showed up during a shift change (lousy excuse). They finally gave him 1mg of dilaudid, and prescribed 2 fentanyl patches, and tried to kick him out. WRONG. He was in no condition to leave at that point. The fentanyl doesn't even kick in for 12-24 hours. So, he got another 1mg of dilaudid, and they tried again to kick him out. At this point, I was on the phone to CMS (Medicare), regarding their attempt to keep kicking him out without good pain control. It seemed to calm them down from attempting to get rid of him. From the way they were treating us, it seemed like they wanted to get him out of the E.R. no matter what. They still tried another 2 times, but not until later on. It still irks me to no end that they were doing what they claim they don't do, that is "treat and street" a patient before even getting blood values back, or even adequately controlling pain.

They did discharge him with 2 more fentanyl patches, and 2 2mg dilaudid tablets. Oh, and 72 hour followup visit set for when Rory is on dialysis on Monday (that's 96 hours, guys). So now, I have to keep calling and trying to get an appointment for Sunday, if at all possible. I did get an appointment for later on Monday, but Rory will be wiped out and certainly in more pain then. You see, dialysis makes this pain even more excruciating, due to fluid changes in the tissues.

Well, we sit here waiting, while Rory is hurting more and more. He is now taking narcotics for pain, when we feel he should be getting treatment instead. Oh yeah, none of his doctors is documenting the progression of the calciphylaxis. We tried to see his nephrologist. No go... she did call me back, though. Calls to his primary care physician are unanswered. We feel at this point that they have written Rory off, rather than provide him the care he needs. Their only response: "Well, if the pain gets bad enough, go to the emergency room". Nice. How about competent medical care?

I did get a call from the "Expedited Review Department" manager, who *seems* to be siding with us. We'll see.

OK. I spoke with Rory's nephrologist, who told me that she had authorized the medication and PICC line, but it was the infusion center who had started this mess. They are accusing us of "interrupting the care of the other patients". They'd better have really good documentation on this. We haven't even yelled at them, or said one bad thing to them. "Female manager" (name withheld) in the infustion center is the one who lied to me, pure and simple, and I intend to make sure that her supervisors and the State of California are aware of this. I will file a formal grievance against her for this, and for endangering my husband's life as a result of her slanderous accusations.

So, we are looking for legal representation at this point and anyone with regulatory authority to stop them from this madness. I called the Sacramento Bar Association, who sent me to Legal Services, who sent me to the Legal Center for the Elderly and Disabled, who sent me to the Health Rights Hotline, who sent me to Lumetra, who sent me to the Department of Health Services. Keep in mind, my ultimate goal is just to get them to give him this medication.

Note: Rory is already experiencing more hardening (calciphylaxis) of his abdomen at this point, and more pain, without the medication. If dialysis was helping this problem, this would not be happening. By failing to continue to adminster the sodium thiosulfate, they have proven that the sodium thiosulfate was working. While we "settled" for half-dose before, I think we will now request the full 25gram dose three times per week, since this setback.

Update: Kaiser's "Expedited Review" department stated to me that this was not something that required their assistance and they have referred it to the standard 2-week review process. RORY MAY SUFFER PERMANENT DAMAGE DUE TO THIS UNREASONABLE WAIT FOR AN URGENT PROBLEM NOR DOES HE DESERVE TO SUFFER IN PAIN WHILE THEY TAKE THEIR TIME! They claimed that calciphylaxis is a chronic problem. This sure came on acutely enough. As soon as I asked to provide the information that they told me I would be able to, she said, "Goodbye Mrs. Roberts" and refused to talk to me further. I told her I was reporting this to DMHC.

I guess I spoke too soon, and made the mistake of trusting medical personnel. We got a call today, from the director of Rory's dialysis center who said she was passing on a message (Which came from Rory's nephrologist - Why she didn't call us is an unknown). She left a message on my cell phone saying that the appointment to put in the PICC line was cancelled, and that the nephrology department, the legal department, and someone else (Who's name was unintelligble) would have a meeting "sometime" to discuss this.

I called Rory's dialysis coordinator, who had no idea that his appointment had been cancelled. She contacted the nephrologist, who said that the appointment was not cancelled by her, but by the manager of the infusion center. She assured me that the nephrologists had nothing to do with it getting cancelled.

I called the infusion center and asked the charge nurse to call me back, since they never even called us to cancel the appointment (rather cowardly in my view). About a half hour later, I got a call from "Female manager" (name withheld), who claimed to be the manager of the center (See the previous paragraph). I asked her point blank if she had anything to do with the appointment being cancelled. Initially, she said "No", and when I asked her again later in the conversation (after mentioning the discussion with Rory's dialysis coordinator), she kept refusing to answer it, stating, "There will be a meeting held in the next few days about this matter" over and over again. BUT, she also stated that they never received the order for the PICC line and medication - something I do not believe at this moment, since I know they got the verbal order on Thursday.

So, we have been lied by someone. Either "Female manager", or Rory's nephrologist. Either way, lying to a patient is unconscionable, and reprehensible. And is subject to legal sanctions.

I have contacted the State of California Department of Managed Care, and explained the urgency of this need. We should hear from them by 5pm tonight.

GREAT NEWS!!!

Today was going to be Rory's last infusion of sodium thiosulfate (according to the discharge orders). His docs kept giving us a run-around, referring to each other to make a decision. It was really frustrating us unbelievably. Well, I started to really make waves at member services (I had been there twice already about this). It seems that around this time, his docs got their heads together and decided to go ahead and allow Rory to keep getting the sodium thiosulfate for the next 6 months at the infusion center, AND to replace his midline catheter with a PICC line (lasts longer). We were not going to let them pull the midline until he got a PICC line order, since this is also Rory's only IV access - he is a DAMN HARD STICK.

The PICC goes in on Monday. They took out the midline on Thursday to give his arm a chance to rest, in the event they have to use the same vein again (Remember his access problems? Same issue here, too). He will get the sodium thiosulfate at that time also.

To his docs (If you are reading this): Thank You! We realize that you may not agree personally about this medication, but it does appear to be working.

Rory has had some rough days at dialysis. His belly started to really hurt while on dialysis, but I don't think it was entirely dialysis related. You see, we have a very rambunctious kitten, about 4 months old. And he used Rory's belly as a launching pad one night. Same spot hurt like he** the next day, and the day after, but started to improve today. Bruising along with calciphylaxis? Or just ticked off the general area due to the crystals? Dunno.

Well, the 4th of July came and went. Rory got his infusion this morning (He feels better within hours of each dose... coincidence? I think not). No problems. Two more left, while we try to figure out what to do to keep him getting it.

We bought some fireworks, but could not light them where we live, so everyone (sans me) went to a local parking lot to fire them off. Me? I had a migraine... and spent the night with my head under the blankets keeping the light out. First 4th I ever missed in 40 years.

It took me most of the week to get calls back from Rory's regular doctor's office, and the otthopedist, but they finally saw Rory today. Bad news from one, good from the other...

First the good news... Rory's amputation on his middle finger is healing well, but he wants Rory to keep the sutures in for at least 4 weeks, since it took that long the last time for him to heal.

Now the bad news... WE WERE LIED TO BY THE DISCHARGING PHYSICIAN AT THE HOSPITAL!!! He said that Rory's personal physician would handle the sodium thiosulfate. The personal physician said he told the discharging physician "no f---ing way!", and refused to even READ UP on calciphylaxis to help Rory (I offered him all my research - he refused). What a closed minded individual he is... he wants us to trust him, but he won't trust us??? Looks like we start looking for another doctor for Rory.

Rory has just 3 doses left from the discharge orders.