Is your PCP/HMO trying to kill you? Beware! Be aware!!!

[aharris2]

I don't know if this is appropriate for the dialysis general discussion or not, I will leave it to the admins to move it if not.

This is Alene writing (written with Rolando's permission) and I am immensely angry over something I had thought we had left behind.

Rolando had a long run of hospitalization free time - almost a year, preceeded by a year and a half before that. Then, in short succession, he has had 3 hospitalizations since Thanksgiving - all relatively minor. The first was for a seizure induced by crashing blood pressure at dialysis (2nd seizure ever in his life). He was put on dilantin. The second was for chest pains. After ruling out heart issues (although they did indeed identify a silent heart attack which occurred sometime in the last three years, but said the damage was minor and his heart was strong), he was diagnosed with severe sleep apnea, made severe perhaps by the dilantin started two weeks earlier. He was given a machine for sleep apnea and is sleeping much better. Two weeks later (a week ago Sunday) a pain which developed in the left side of his face coincident with vomiting three days earlier became quite severe and along with it, unrelenting vomiting. We have no diagnosis, except for perhaps a low grade sinus infection. He was released on Monday with an antibiotic and DILAUDID sufficient for 4 days.

That's were the problem begins. We tried to get a refill because we are away for the weekend and the last thing I want is to run out of pain meds on a long weekend (narcotic = paper prescription only). The doctor refused without seeing Rolando first. Not a problem, in fact this might even have been interpreted as good and caring...MY MISTAKE!!! When we get there, the focus of the visit was a discussion of various "comorbidities" (her seemingly favorite expression), his lung problem (he doesn't have one, he has apnea) his seizures (there have been only two and he's on medication) and perhaps Rolando doesn't want to keep up the fight. She pointed out that, as a friend, I have no legal standing and that as a friend of course I want him to live, but maybe he's tired. And then, the inevitable "do you have a living will?" Well, he once wrote a very thorough one (actually an advance directive) which we cannot currently locate. So he asked for the form so that he could do it again. The doctor was just so pleased and immediately left the office to let her case manager bring in the living will form. She hands it to Rolando - a single sheet, not the multipage document that we expected. What was it? It was a DNR! I questioned the caseworker - why isn't this multipage like the one he filled out a while back in the hospital. She says something like that's special because there's so many different things that can be going on in the hospital, implying that the form she had just given us was a living will (a will to live, an advance directive). A DNR is by no means a living will. Was this a trick? Trying to gain the ultimate power (over their bottom line) by fooling the patient into signing a DNR - the doctor's trump card!!! (It is just beyond the end of the fiscal year and Rolando is such an expensive patient that perhaps the HMO did not give the office a very good bonus.)

As a friend (and primary caregiver), I have no legal standing. Without regard, I try to be his advocate. VASTLY MORE IMPORTANT IS THIS: THE DOCTOR HAS NO LEGAL STANDING UNLESS IT IS GIVEN TO HIM/HER. Why did this doctor try to manipulate him into signing a DNR? There have been times when things were much worse when it might have seemed more appropriate, but it was absolutely inappropriate now. What is going on? I feel like I have to protect him from his primary care physician!

Rolando has fought and is fighting a valiant fight for survival. 3 1/2 years ago after 6 months on dialysis, he was hit with calciphylaxis - immensely painful resulting in significant tissue death and wounding over the legs and hands. It has a high morbidity with death almost always resulting from infection. And, in fact, infection did occur 6 months later and Rolando almost died from septicemia. He was so debilitated that he was placed on hospice care in October of 2003. Much to the surprise of many, he did not succumb. Although it has resulted in some disability, he got better. He began to heal his wounds and ultimately got booted off of hospice in Feb 2005.  Since then, Rolando has traveled in and out of the country. He has celebrated birthdays - his, his family's and his friends; and celebrated holidays. He saw his eldest graduate and saw his youngest start to drive (probably what caused the heart attack), and get her first job. He moved his eldest to college (go gators). This spring there will be two more graduations ...and more college ...and then, more graduations ...and then, weddings ...and then, grandchildren. And in between, more trips (possibly Spain within a year). And Rolando has the love of his family - his wife, his daughters, his brothers and sisters, and friends. And the everyday activities that he enjoys - movies, eating out, music, tv, and surfing the net and chatting. Now is a relatively good time. And there is a bottom line fact - anyone on dialysis controls their own fate. They do not need a doctor with a DNR.

(And the punchline - the doctor refused to write a refill for the dilaudid. Instead, she wrote a prescription for oxycodone - something Rolando has used from time to time. We get to Miami and go to have it filled but the prescription is not fillable because the doctor wrote it for a strength that does not exist. Here we are, out of town with no way to get pain meds)

[Rerun]

Call your own doctor and they will call it in to a local (where ever you are) pharmacy.  Even if your doctor's office is closed they usually have a doctor on call.

The one you saw sounds like a idiot.

[angieskidney]

Wow! Ya that would have pissed me off too!

[jbeany]

 

Oh how they like to play God!  I'd say you feeling that you need to protect him from his doctor is exactly right!

[aharris2]

  thanks to my sister for writing so good her frustrations, this is only an example on what i have to put up with since i became ill.  once a dr. told me i only had 5 yrs to live that was 15 yrs ago....i guess i'd showed him huh? as time goes by n little by little i will be writing the horrendous war stories i have to share with u...but for now i'm soooooooooooo tired i can hardly type. 

take care,

rolando

 

[aharris2]

Hi, this is Alene writing, updating.

Well, we went away to Miami for the weekend. We didn't really run out of painkillers because, given the quality and humanity (or complete lack thereof) of Rolando's PCP, it's very important that I never let anything become that critical. Regarding "calling in" a narcotic - it appears to be illegal here in FL. Paper ORIGINAL scrips with no refills only.

Rolando had entered the hospital with a pain level of 20. He was released, undiagnosed, when it had dropped to 10. (Note that during the worst of the caciphylaxis when his tissues were dying, he never reported a pain level greater than 10 - he's not much for exaggeration) During the weekend it became clear that the pain meds were not alleviating the pain at all so he quit taking them - the only effective thing was a heating pad that we were using. While Rolando would report that he enjoyed the weekend, he had a difficult time.

We were back in town on Tuesday, in time for Rolando's regular appt with his nephrologist. This guy is the other end of the spectrum - a warm and caring doctor who will spend as much time with you as you need and who will call other doctors on your behalf and even fight with them if necessary to get his patients the care they need. He diagnosed the problem. He narrowed it down to either arteritis or trigeminal neuralgia and contacted a neurologist on Rolando's behalf, arranged an immediate appointment for us, and then hammered the PCP's case manager until they finally relented and gave us the referral to a neurologist that they had been refusing us since the seizures episode. "Happily", it wasn't arteritis because, it blinds quickly, and given the delay in competent care... It appears, however, to be trigeminal neuralgia which is decribed on the web as possibly the most painful affliction that can hit a person - suicide from the pain is not unusual. Again, this time happily with no reservations, Rolando was treated with Tegretol which reduced his pain in steps until it was finally reduced to a zero yesterday morning.

So there you have it - Thank God for our nephrologist. He does so much for Rolando's well being and quality of life. The pcp - well, she would drive one into wanting a DNR.

Things are good right now. Rolando is pain free, leaning back in front of his computer, music playing,  the football game on - just tied 21-21... and SNORING! I am here, less worried, pondering what action to take next - change drs within the pcp's office, change entirely because the case manager is a significant part of the problem (quite an ordeal when there's an extensive medical history and specialists one wants to continue to see), follow up with quality of care complaints to the corporate office and to Humana...

Hermanito, you are the strongest, bravest person I have ever met  and I am so glad that your body doesn't know how to count 

...strongest, bravest... I've gotta guess that there's a lot of us on this site who know someone like that (perhaps even you yourself)

[goofynina]

Hey Alene and Rolando,  I am sorry to hear you were in such pain on your "vacation" but i am happy to hear you are doing much better now    May i ask where the caciphylaxis was?  I have mine in my stomach and in my legs and i know how that pain is, excuciating to put it mildly... I am just glad he is doing better and is now pain free.  What helped me was Motrin, i would take 4 of them at a time and the pain wouldn't go away totally but it did ease up after a bit, just wanted to let you know incase it happend again...Keep us posted 

[aharris2]

Hey Alene and Rolando,  I am sorry to hear you were in such pain on your "vacation" but i am happy to hear you are doing much better now    May i ask where the caciphylaxis was?  I have mine in my stomach and in my legs and i know how that pain is, excuciating to put it mildly... I am just glad he is doing better and is now pain free.  What helped me was Motrin, i would take 4 of them at a time and the pain wouldn't go away totally but it did ease up after a bit, just wanted to let you know incase it happend again...Keep us posted 

Suzie, calciphilaxis attacks your veins and arteries so your skin begins to decay it becomes dead after a while...has your Dr told you that you have it? is the skin on your legs dying? i don't think that you'd be telling us you have it in your stomach if you had it, they would've had to cut it out of it or worse yet you would be dead if you had it there. i lost my right leg due to it and septicemia my left leg was left very much to the dogs BTW i don't think motrin would help with the pain I was put on the strongest pain meds there are and i would still suffer the effects of calciphilaxis very bad. oh i almost forgot... i also had it in my butt I'm still (after three or four years) trying to recover from the effects i still have a couple of wounds to heal yet.
well my dear, hoping that you don't have that horrifying disease, if you have more questions, please by all means let us know

Rolando

[goofynina]

Rolando,  What i have are more like masses of something that formed in the soft tissues of my stomach and now that the pain is gone (was more of a burning sensation) i am still left with these masses that dont seem to be going anywhere, i have them on both sides of my stomach 

[angela515]

I have calciphilaxis... I got 2 big PAINFUL sores, one on my right hand and one on my left index finger, maybe ill post a pic of them. They are VERY painful... they did a scan of my parathyroid glands last Wednesday at clinic (they have done one in the past in July and said I had enlarged parathyroid glands but they wanted to try to control it with meds), my calcium and PTH are still running high after transplant... so they are considering taking out my para's within 6 months... they have not made a final decision yet, hopefully this wednesday they will have some news since they should of gotten the results of the scan Friday. These sores I have had for over 5 months now, and are VERY VERY painful, nothing helps.. and being on the hands dont help cuz u do everything with ur hands so they are constantly being touched, ugh. They wont go away... until the paras are under control.

[aharris2]

(alene writing)

There seems to be a myriad of complications of dialysis due to messed up blood chemistry. Goofy Nina, there's calcifications and calcium deposits around joints and in soft tissues and I think it's relatively common (we haven't dealt with this so I'm not up on it).

Angela 515, as you know there is calciphylaxis. It is a very rare complication of dialysis and is also found in kidney transplant patients. Most doctors have not heard of it and some nephrologists also. Many nephrologists have never seen it. They don't know what causes it and it is not predicted nor predicated by levels of calcium and phosphorus in the blood. It is the formation of calcium phosphate deposits in the small and medium blood vessels of the body. It causes tissue death from lack of blood flow. IT IS A HIGHLY MORBID CONDITION with 60 to 80% of its victims dying (but, don't despair, when it hit Rolando in 2003, it was reported as 90%, and there's more). Obviously, the smallest vessels like those feeding your body surface are the hardest hit, but, a "well" placed blockage can kill a victim outright.

The tissue death is immensely painful and manifests first as pain (Rolando was on oxycodone with limited pain relief), followed by wounds (for Rolando, it started on his hands in May, 2003 after 6 months on dialysis and then continued on to his legs with wound formation continuing over 5 months and, as he said septicemia almost killed him near the end of that phase). This is the phase where the doctors need to be aggressive in both trying to arrest the progress of the calciphylaxis and also with wound management. For arresting the progress of the disorder, inappropriate meds such as binders containing calcium are stopped and pth levels are looked at in consideration of parathyroid removal. (The parathyroid thing was considered with Rolando, but his levels were not high. That left us with no treatment options. They were working on one - sodium thiosulphate - but it was not available at the time.) That sodium thiosulphate treatment may be available now. But, even with aggressive treatment, one is left with wounds.

The wounds will stabilize as dry gangrene with smaller affected extremities mummified. There was a lot of argument at this point - debride or not, amputate or not. In certain ways we were either forced or encouraged to take no action but it was for the best, I think. The eschar that forms on a gangrenous wound is very stable and one doctor even called it a biological bandage. The smaller affected extremities - fingers - some doctors want to amputate, but others encouraged no action as long as there's no infection. We took no action and Rolando's fingers mummified.

At this point, the healing begins. Dead tissue is dead, but healthy tissue can fill in from the outside in. During this healing process, the fight is to prevent infection or to catch it early enough to avoid amputation and sepsis. IT IS INFECTION THAT MAKES CALCIPHYLAXIS HIGHLY MORBID! The healing is a slow process, but infection can be fought and the healing of what's left will occur.

Angela, hopefully this won't be as rough of a ride for you as it can be. We are here for you. If you have any questions or we can help, please contact us privately or right here.


Without suggesting a cause, Rolando was 6 months into dialysis and had been on Phoslo with phosphorus tending high, but not ridiculously so. He was given his first dose of Zemplar in early May. The pain in his legs soon began and the first lesion opened on his finger. The pain was horrible and no one knew why or what was happening. Then the wounds opened on the legs and the fingers started to turn purple...and the nephrologist saw him. He diagnosed it, but there was nothing except for wound care and pain management to be done. The wounds ceased to progress 5 months later. After the battle with septicemia the wounds stabilized. Rolando had between 30% and 40% of his legs covered with eschar - dead, dry, black tissue and his fingers, all except one, mummified. At this stage,  Rolando was on Hospice and was not expected to live. He was on a morphine pump with oral morphine for breakthrough pain. Interesting thing about hospice, they're not afraid to kill you with pain killers. THANK GOD!!! Before them, every one (PCP and pain management specialists) acted like he was a drug seeker/addict. Hospice actually eased his pain and made his life worth living and they supplied without question any and all wound care supplies that we needed to keep the wounds clean.

Slowly but surely the wounds healed with one setback - an infection in the right foot which first manifested itself on 4th of July weekend 2004. It was caught early, but still, 2 1/2 weeks later, Rolando lost his whole leg. The fingers eventually autoamputated (read that "fell off" - sometimes I am stopped dead in my tracks just thinking about the sheer horror of having your body parts fall off) but with some healing first. The choice to do nothing maximized the amount of finger and hand that Rolando has been left with - a left thumb and 2/3 of a left middle finger, 2/3 of a right thumb and 1/3 each of a right index and middle finger. After a year and a half, hospice concluded that Rolando was not going to die anytime soon and booted him off. That was two years ago. The hands have been fully healed for about a year and a half now, the right AKA has only just healed and the left leg has fully healed except for the left heel which has gone from a wound measuring 10 cm x 10cm to 1cm x 1 cm. We are scheduled for our 4th and hopefully last apligraf a week and a half from now. There's an occasional minor blowout in the scarred areas, but they heal in a normal (for a diabetic manner)

[angela515]

I'm sorry Rolando had to go through all that and is still going though it. Luckily for me mine is not bad like that it is just 2 sores.... one on each hand... with my dr's fully understanding the disease and are helping to control it and get rid of it. I shall keep you updated.

[aharris2]

bump   

[willieandwinnie]

Good bump aharris2.

[aharris2]

Wow, that was very rambling!

My point was this: Don't sign a DNR unless you trust your doctor to decide when it is your time to die. That DNR is their trump card, giving them the legal right to passively kill you. Keep in mind that they may be motivated by money, as opposed to your family who will be motivated by love. Your PCP probably has no idea what makes your life special for you.

(stopping here, i'm feeling the urge to ramble, to rant, to rave... thinking of past PCPs arouses extreme anger and hatred in me)

Alene

[devon]

As an aside to this... I'm curious about the issue of your relationship not being recognized as anything but "friends". You obviously are more than a friend. 

Can you arrange a Power of Attorney, Domestic Partership, or some such to formalize the relationship so you will never be denied access to him and can direct his treatment?  Just a thought. 

It seems a shame that the definition of "family" only includes those who are related by blood or marriage. You are obviously his family.

-Devon

[aharris2]

As an aside to this... I'm curious about the issue of your relationship not being recognized as anything but "friends". You obviously are more than a friend. 
Can you arrange a Power of Attorney, Domestic Partership, or some such to formalize the relationship so you will never be denied access to him and can direct his treatment?  Just a thought. 
It seems a shame that the definition of "family" only includes those who are related by blood or marriage. You are obviously his family.
-Devon

Thanks Devon

Rolando is happily married and, in the event of his incapacity, his wife would be his medical surrogate by law. When times are bad, his wife and I talk a lot, but ultimately the decisions are hers.  Right now, he can and does direct his own treatment.

The issue is the DNR and the heavy pressure placed by the primary care physicians on signing one - "you wouldn't want your loved ones having to make that kind of a decision for you...(Yes, I would), do you trust them to pull the plug when there's no hope of recovery...(Yes, I do), do you want to put them through that kind of anguish...(No, but it has to be that way since you, PCP, have a monetary interest in my demise and cannot be trusted)" I'm sure all of us have heard it all many times before.

I find more security in loved ones acting out of love than in a PCP who may be acting out of greed.  Just say no!

Alene

[stauffenberg]

Obviously it was not appropriate for the physician to try to force a DNR order on the patient, especially as the facts were described in this case.  However, in the doctor's defense, it is often true that many patients are truly exhausted and debilitated by disease and would be much better off dead than alive, but their friends and relatives selfishly try to force them to continue living.  In such cases, the doctor should try to penetrate the wall of friends and relatives surrounding the patient to allow the patient to speak up in his own true interests, which those around him may be denying, disguising, and repressing.

While various jurisdictions have their own default-rules about who gains the right to make life and death decisions and treatment choices for the patient if the patient can no longer make them for himself, there is in principle no limit on your freedom, with the proper legal orders in place, to make any competent adult your agent for such purposes in the event of your being unconscious when the decision has to be made.