Will you be the one to die?

(deactivated member)
on 8/21/11 2:17 am - San Jose, CA
I would also like to add that when you are considering the mortality statistics of a DS surgeon, you might also want to take into account WHO died and why.  Some DS surgeons "cherry-pick" their patients - they won't do people who are too fat, too sick, or too old, for fear of hurting their stats.  Or they insist on doing such patients in two steps.  Other surgeons, more confident of their skills, will take on those hard cases, and sometimes they die - a risk they were willing to take in the face of dying a miserable death anyway, with little quality of life.

If you all remember Castaway Ray, he was turned down by several surgeons.  A 500 lb man in his 40s, with kidney failure and a gall bladder that was bad but no surgeon would touch him for even that, the Rabkins did his DS but he died about 10 days later from complications related to his cholecystectomy - his gall bladder was so full of stones it had destroyed his bile duct (I may not have that exactly right, but it was definitely related to his bile duct and not the DS per se). 

Compare that to the cir****tances around Stephanie's death (although until the autopsy is reported, we really don't know what happened).

NorCal Kaiser is slowly giving up fighting SOME of its patients who want the DS.  But if you look at who they are allowing to go to Rabkin without much of a fight, you will notice that they are their oldest, sickest and fattest patients.  Big surprise - they are foisting off their highest risk patients on an outside surgeon, at a fixed fee rate, and helping their own stats in the process.  Remember THAT when you consider his stats.  Similarly, Keshishian does not cherry-pick and takes on revisions that other surgeons refuse to touch.  Their stats are even more remarkable in view of the patients they take on.
kirmy
on 8/21/11 6:55 am - BF-Nowhere, United Kingdom
Yeh not meaning to gloss over individual predilections towards patient groups but on the whole Ds surgeons (vetted and competent ones) are working from a more humane demographic I find.  I would cherry pick my patients as well.  Not just because of the statistics but mainly because some of them are just ******g scary sick!  When you weight 700lbs and have to be ventilated to live normally I'd be balking at a general anesthetic as well.  It is the Ds surgeon who says no for the patients welfare that deserves a pat on the back I reckon.  It would be easy to roll the dice and cash the cheque.

So I admit my stats were very generalist but being a health consumer is what each DSer should be in training for well before booking the first pre-op appointment. 

p.s. he likely dies not of a ruptured biliary tree but of pancreatitis secondary to biliary tree obstruction and infection......well I'm guessing based on the most likely  set of cir****tances.
            

RIP Mickie aka Happychick.  You will be missed deeply.
(deactivated member)
on 8/21/11 7:40 am - San Jose, CA
I was looking back at the posts from that time.  Here is something CastawayRay posted the day before he left for SF - it was a letter he wrote in March 2006 to his grandmother, who helped save him when he was a sickly child and helped with the self-pay DS:

Dear Nana
In giving birth to mom you also gave birth to me, already within her almost 70 years to the day. February 6, 1962 brought a tiny little creature into the world. Nearly dead at birth, something sparked deep within the sickly little guy and progress was made. Heroic overfeeding quickly made the tiny tot a
tubby terror, and the battle to make me thin again began. Everything was tried, from structured feeding to starvation, weigh****chers, and really, nothing worked.

Dozens of years go by and fat is now the sickness, and the big man is now nearly dead again, in desparate need of heroic measures that no one in the world would provide. I live in a world spent feeling my strength being stripped away, tethered to life by torturous dialysis machines; the only escape from which is a loss of hundreds and hundreds of pounds. There is horror in that tethering however, life shrinks to an infinitessimal dot, much like the TV sets of old, where a murky horizon collapses into a tiny dot, slowly fading into non existence. It is a world without hope, without joy, without a sense of future.

It is a barren existence at best, and as it pulls on your strength and breath and endurance, everyone around you pulls away with it.  Everyone that is, except you and mom. My champions, you always let me know that I was special, now ... if only I could remove the Wall Of Fat around me. That time has finally come, and I cannot find the words to thank you for loving me enough to lift this terrible curse from me and let me finally LIVE.

Two hundred pounds from now, Ill be able to get a kidney, and three hundred pounds from now Ill be like James Cagney in White Heat ... TOP OF THE WORLD MA, TOP OF THE WORLD!!!! To know that rapture, to finally feel the pure and simple joy of JUST BEING WHOLLY ALIVE, and to know that its now all GOING TO HAPPEN ... as of Mar 16 2006 I am born again, the world is opened up again, that tiny white dot is more than the world, its the milky way ... and all of it is thanks to you

Love,
Ray

And this is what was written about what happened:

From the day of surgery:
Ray was in surgery for nine hours. Everything is fine.

Castaway Ray had a castaway gall stone that got away from the docs and they finally left it in him... seems the plan is to see if it just passes. Guess it really isn't a huge deal so they closed the boy up and sent him over to ICU to keep an eye on him.

From day 3:
Ray had to be taken into surgery again on Saturday because there is ablockage in his bile duct, most likely due to the gallstone that got away during the first surgery. As I understand it, they put in a stent but due to his bulk, it is getting kinked and he is still blocked and therefore leaking bile into his abdomen. He also now has an infection and is on strong antibiotics. They are going to do some more diagnostic procedures (including the stomach leak test, to see if he can start having something to drink) tomorrow AM, and may need to take him back to the OR at that time to resolve the bile duct problem, possibly requiring an open procedure.

Day 4:
Ray is still struggling, still critical, but apparently stable for now. He was getting his dialysis this afternoon. He still has an infection and fever. There is still a problem with the bile duct, and he is still apparently leaking into his abdominal cavity. They will probably have to re-operate tomorrow to clean out and repair the bile duct, and to get a more accurate read on which antibiotic to use.

Day 6:
Ray was taken back into surgery last night to try to repair the bile duct leak; she said there was 20 lbs (?) of bile and secretions that were also removed from his belly. She was not sure whether this surgery was performed open or lap. He needed to have a blood transfusion as well, which is actually
not uncommon for someone on dialysis, since that process destroys some red blood cells, so dialysis patients are often anemic (and often have to get erythropoetin shots to stimulate red blood cell maturation). Ray is on the vent again, and they are probably going to keep him on it longer this time, because he needs the rest, plus while he is on the vent, he is sedated and therefore in less pain from his back, which continues to be the source of the majority of his discomfort. She did not think he has yet had his leak test, which is kind of irrelevant since he's on the vent and sedated and can't drink anyway.

Day 8:
Again, I'm sorry to say things are up and down with Ray, and today was more down than up. Ray spent another several hours in surgery today to again try to repair his bile duct, which is not healing properly. He has also developed a yeast infection in his abdominal cavity, presumably a consequence of being a diabetic and prone to yeast infections. But they know what it is and are treating it. As a consequence of this FOURTH surgery in eight days, Ray will likely be on the vent for another couple of days. I think they were also going to be putting in a feeding tube with this surgery. From what his mother Kathy said, it sounds like he is in critical but stable condition at this time.

Later that same day, a more detailed update:
Ray went into surgery with Dr. John this afternoon. He had developed an infection where bile was leaking at one on the closure sites of the biliary channel. Over 4 and a half hours in an open procedure they cleaned out the infection and put in a drain. They noticed yeast growth in the chest cavity; this is likely because of his state of health going into the procedures as well as his lengthy course of  antibiotics during his hospital stay.

On day 10, I posted this (excerpted) in response to some of his friends who were critical of what was going on with him:
Ray's surgeons (and mine, so I am somewhat prejudiced), the Rabkins at Pacific Laparoscopy (paclap.com), are the premiere DS surgeons in the country, as well as the most experienced laparoscopic DS surgeons in the world. Robert Rabkin helped develop the lap DS, and his brother John was and still is a liver transplantation surgeon. They are the most qualified bariatric and laparoscopic surgeons in the world, and are hardly reckless. They have done around 2000 DS surgeries, the vast majority laparoscopically, including on people from 600-800 lbs., almost every one of them including removal of the gall bladder and appendix. They also perform other laparoscopic procedures besides weight loss surgery as a part of their practice. They KNOW lap surgery is easier
and safer than open, by the way, in particular in their hands. This is particularly true for diabetics like Ray, who have wound healing problems under the best of cir****tances, and thus for whom open surgery is even more problematic.

You should also know that Ray was not particularly at risk for a long laparoscopic surgery. One of the difficulties he faced in getting the Rabkins to accept him as a patient was to get a thorough cardiac
evaluation -- which, when they finally found a way to do it without doing a cardiac catheterization which would have risked dealing his kidneys their final blow (he still has a bit of renal function left, which makes a HUGE difference in how comfortable he can be living on dialysis, as it allows him to drink more than a person with fully dead kidneys), via a Trans Esophageal Echocardiogram, showed that Ray's heart was in very good shape, despite what his body has been through over his many years of super morbid obesity. So again, it wasn't the 9 hours of surgery that have caused his current situation.

Ray's current problems are completely unrelated to the DS portion of his surgery. That part was textbook. The problem was his gall bladder, which was so diseased and so full of stones that at least one had become lodged in his common bile duct, and the surgeons were unable to remove it during the first surgery. However, even this was not so much the problem as the damage that had already been done by the stone(s) to his common bile duct. This is what has been damaged, and why he has a bile leak.

This situation was known well in advance -- in fact, Ray had been told he need to have his gall bladder out 2-3 years ago -- but HE COULD NOT FIND A SURGEON IN NEW JERSEY WHO WOULD PERFORM THE CHOLECYSTECTOMY on someone his size. He was in pain from the diseased gb, but nobody would help him. This problem was dwarfed in recent months by the kidney failure, but it was there. The Rabkins had NO CHOICE but to remove his gall bladder during his DS (which they routinely do anyway), and had warned him in advance of this complication.

The Rabkins operate at two hospitals, St. Mary's and California Pacific Medical Center. CPMC is one of the best hospitals in the country, and the only one of the two that has the medical facilities including
in-room dialysis) that were sufficient for Ray's medical condition. Unfortunately, while St. Mary's has a capped fee self-pay program, CPMC does not. It is what it is. But there was no choice about where he
would have the surgery.

Another thing: in order for Ray to even be put on the renal transplant list, he has to get to a BMI of less than 30. There was little chance that the RNY was going to do that for him, whereas the DS has a MUCH better track record for SMO folks. Those are the facts. There was no point in Ray going for an RNY and then hoping to have a revision to a DS later -- he needed to go for the whole enchilada the first time. What is SHAMEFUL is that the NJ Medicare or Medicaid program would not help him get the surgery that was clearly indicated in his condition. He had several DS surgeons who had confirmed this, but none of them could (or would) do someone like him -- given his phyical condition and insurance status. (And there is nobody qualified in NJ to even attempt the DS -- the only one in NJ who has ever done one has a track record of having done exactly two of them -- not exactly the level of skill necessary for Ray's condition.) The Rabkins fully understood this, and agreed to take him on anyway, even though they risked not only their reputations and income (to my knowledge, their fee has remained the same irrespective of the radditional procedures he has undergone), but because they are, in the truest sense mensches -- human beings who wanted to help a man otherwise without hope. They themselves had nothing to gain and much to lose by taking Ray on, and they are not in the slightest bit doing this for any reason other than their humanity.

It is also important to note that, although Ray's situation is somewhat critical, in the sense that he's in the ICU and on a vent to help him breathe (because of his bulk, the infection and fever, he is not yet
able to get up and walk, and the pain meds make his breathing somewhat shallow, so the vent is helping keep his oxygen sats up), he is stable and his bile leak is ultimately expected to heal by itself with appropriate support and medical management. Again, his DS surgery itself went just fine, and his medical problems were caused by a medical condition for which NJ refused to provide appropriate treatment with a surgeon qualifed to deal with a patient like Ray, and the neglect of letting this condition fester for 2+ years.

Day 12:
Things are looking quite serious again. Ray has an infection in his dialysis port, and it has gotten into his bloodstream. It also now appears he might have a leak in addition to the bile leak, either from the stomach or duodenal anastomosis (I think that's what Kathy was talking about -- she was pretty upset). They were going to finish his dialysis this evening and then take him up to the OR at 9 PM tonight to see what's going on in his abdominal cavity (not his chest cavity, which would be worse, I think). He was off the vent from last night until they take him up to the OR (which is a good sign), and I think Kathy said they had even moved him out of ICU, but of course, he'll be back in ICU and on the vent after tonight's surgery.

Day 13:
According to Kathy, Ray is in critical condition now. Last night, they took him back into surgery to clean out the infection in his abdomen and to look for a leak, which they DID find, in his stomach sutures. They put in a feeding tube into his intestine, so he can get some nutrition while his stomach heals. They left the incisions open so he can heal from the inside. I'm not sure if this operation had anything to do with the bile leak, however. I'm also a little hazy on this part, but either his dialysis shunt or the chest catheter (perhaps the same thing?) is being closed off for 24 hours due to the infection problem.  He is in a lot of pain, still primarily from his back. He is still in ICU, still on the vent and still sedated.

Ray passed away on day 16, after his heart stopped more than once and he was resuscitated, and finally being made DNR.  He fought valiantly for having quality of life, and unfortunately, too much damage had been done to his body, between the diabetes, which caused the kidney failure, and the untreated gall bladder disease.  His heart was strong, both literally and figuratively but the rest of his body was not.
(deactivated member)
on 8/21/11 8:05 am
kirmy
on 8/21/11 11:18 am - BF-Nowhere, United Kingdom
It's tragic that his sepsis was allowed to go so far.


Bloody sad sad story.  Poor man.  God I feel for him.
            

RIP Mickie aka Happychick.  You will be missed deeply.
(deactivated member)
on 8/21/11 11:50 am - San Jose, CA
I don't know that it was "allowed" to go so far - he was diabetic, in kidney failure, had 4 trips to the OR in 8 days, had a dialysis catheter and a bile leak.  Although it wasn't mentioned, I imagine there could have been pancreatitis as well, with all that bile in there, and he developed a gastric leak from failure to heal (I can imagine there were steroids being used for his other issues).  The antibiotics he had to be on probably potentiated the yeast infection as well.  It was a horrible cascade.

He was such an eloquent writer too - his writings can be found on a variety of websites, as  CastawayRay or Ray Cook.
kirmy
on 8/21/11 10:46 pm - BF-Nowhere, United Kingdom
Bad phrasing on my behalf. His gallbladder would likely have been a ball pf pus and caused a massive leak and consequently pancreatitis on a grand scale due to the impact on the biliary tree and inter abdominal sepsis. This kills!  His pre-operative management should have been complex anti-biotic therapy titrated to his renal GFR so as not to kill him through toxicity.  Still it is a massive risk.  Massive massive risk!  That took some balls to get him on the table. 

What a loss to this community.  What an eloquent sensitive voice.  He is a resounding presence already. 

Poor sweet soul. xx
            

RIP Mickie aka Happychick.  You will be missed deeply.
orangecrushed
on 8/21/11 2:59 am - Triad, NC
Thank you for posting this, Kirmy!  Stephanie's death has rattled a lot of us.  If nothing else, it's made me look at my surgeon through a microscope to see if I've missed *anything*.  I wish your friend the best, and I'm glad that she has someone like you to be there for her!

Nic
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kirmy
on 8/21/11 7:24 am - BF-Nowhere, United Kingdom
Thanks Nic.  I love Kingy like my sister so she'll have me in full Technicolor watching out for her.
            

RIP Mickie aka Happychick.  You will be missed deeply.
Nissa_M
on 8/21/11 3:34 am - TX
Thank you for this post! I woke up and saw it and it was like you were writing it for me! I am a bag of emotions lately and I know it's just normal pre-op jitters. The recent tragedy here has upped those emotions and fears. I had all but convinced myself that I could pass on the DS, but deep down I know I WANT it and I deserve to be happy and healthy.

Thank you! I'd hug you if I could!
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