Skip to main content

View Diary: Wednesday not your usual woozle wrap-up (287 comments)

Comment Preferences

  •  OT: Did you hammer things out with the insurance (19+ / 0-)

    devils? If not, The Patient Advocacy Foundation ( provides pro bono case management and insurance mediation assistance for those with chronic, debilitating, or life-threatening illnesses.

    "Those who can make you believe absurdities can make you commit atrocities." ~ Voltaire

    by KelleyRN2 on Wed Jul 28, 2010 at 05:40:42 PM PDT

    [ Parent ]

    •  Thanks for the link (13+ / 0-)

      I'm passing it along to a friend.

      My comments may not be used for any purpose without explicit permission.

      by cai on Wed Jul 28, 2010 at 06:04:32 PM PDT

      [ Parent ]

    •  I'm not directly involved...yet (16+ / 0-)

      the staff at the surgeon's office is coordinating the pre-approval and they have indicated so far that they don't think there will be a problem.

      If it is rejected, the doc himself will contact my insurance company and make the case for the surgery. He's done this before with other cases and has been successful in each case.

      It's an interesting dilemma, actually, as my prognosis after surgery is really only somewhat improved beyond my prospects before surgery. We often think, in this country, that surgeons and surgery will be able to fix all things and restore the body to, or near to, 100%. I recognize this is not the case for me, though I hope and believe this will improve my longer term and potentially my quality of life. It will at least improve my mental state as just having the source of the primary cancer removed will allow me to feel some relief that progression will be slowed. I hope.

      According to Reardon, the surgeon...

      Angiosarcomas are two to three times more common in men than women and have a predilection for the right heart. Eighty percent arise in the right atrium. These tumors tend to be bulky and aggressively invade adjacent structures, including the great veins, tricuspid valve, right ventricular free wall, interventricular septum, and right coronary artery. Obstruction and right heart failure are not uncommon. Pathologic examination of resected specimens demonstrates anastomosing vascular channels lined with typical anaplastic epithelial cells. Unfortunately, most of these tumors have spread by the time of presentation, usually to the lung, liver, and brain. Without resection 90% of the patients are dead within 9 to 12 months after diagnosis despite radiation or chemotherapy. We have found carefully selected patients without evidence of spread on metastatic evaluation who have undergone complete surgical resection with subsequent chemotherapy (Fig. 58-18). We have had no hospital mortality in this small group and the main problem remains metastasis rather than recurrence at the local site.

      I'm now one of those carefully selected patients. I have had evidence of metastasis to my lungs, but this hasn't been apparent in the last six months+ of scans done. The chemo has been successful so far for me. It's the law of diminishing returns though, that comes into play with continuing chemo.

      Of the thirty or so cases Reardon's operated on in the past eleven years with what I have, I know of only a small subset who have survived past five years (maybe three). In a few of the current survivors, the sarcoma has returned to the original site and re-invaded. Reardon wrote this in 2002-2003; since then there has been one patient that I know of who has had three recurrences in the right atrium, with surgery three times to resect. He's now at a point where additional surgery may be impossible and it's metastasized to other organs. And as far as I can tell, he's the longest survivor - to date - at seven years post-diagnosis.

      I'm not certain how the insurance gods will deal with this. So far they have covered everything to 100%. How they make their decisions is completely beyond my purview, but not necessarily beyond my direct action.

      thx, Kelley, for the info, and I will use it if necessary.

      •  I THINK M.D. Anderson is well staffed, but ... (13+ / 0-)

        If there's anything in this blather you haven't learned yet, it's more than worth the cut and paste:

        Don't expect Florence Nightingale when you or someone you love is hospitalized. While a precious few hospitals have managed to maintain high staffing levels, most have not. A friend of mine left the profession after one terrible shift when she had to choose between a patient who was hemorrhaging and a patient in respiratory failure. A nurse will assess you when you are admitted. You'll get your medications, hopefully the right ones, but seldom on time. It's a good idea to shower before you arrive because bathing is becoming a lost art in hospitals. If you are restricted to bed, good luck finding someone to bring you a bedpan. Don't count on your linens being changed with much regularity, either, and try not to touch anything you haven't disinfected yourself. In spite of the presence of superbugs in hospitals, housekeeping has been cut to the bone in many. If you have an IV, monitor the site yourself and start raising hell if you see swelling or redness, or if it starts to leak or hurt. If you have a urinary catheter remember three things: The collection bag should never be allowed to touch the floor, it should never be raised higher than the level of your bladder, and it should be measured and emptied by someone every shift or when it gets full. If you have a wound from trauma or surgery, keep an eye on your dressings. Report obvious bleeding immediately. If you have a cast on an extremity, the fingers or toes should be watched for swelling, coldness and color change.

        Don't let anyone touch you until you see them wash their hands. Don't let anyone use a non-invasive instrument on you -- stethoscope, blood pressure cuff, that kind of thing -- until you see them disinfect it. If your physician wears a necktie, ask him to tuck it into his shirt. Create a "clean zone" around yourself, your bed, your bed table, your call button, and anything else you may touch, using the strongest disinfectant you can lay your hands on. NEVER let your bare feet touch the floor. Wear slippers when you get up and take them off before you swing your legs back into the bed. Whenever you touch any surface that you haven't personally disinfected -- doors, anything in the bathroom -- wash your hands. Nosocomial (hospital acquired) infection should be your greatest fear, and there's a lot you can do to protect yourself. Make your family and visitors take the same precautions. I don't care if you're a shrinking violet in every other aspect of your life, be assertive while you're a patient. Get madder than a pet monkey if you have to. Your life may depend on it.

        Another area that requires vigilance is medications. I know you wouldn't be in the hospital if you were at your best, but please, please try to monitor your medications. There are times when mistakes are more likely to occur. When you're admitted, all your meds are entered into the hospital's pharmacy software. Transcription errors occur. When you're transferred between services, say from the ICU to a floor, misunderstandings about what you've already been given and what you need to be given can lead to over- and under-dosages. All orders are suspended when you have surgery and must be re-entered, with appropriate changes, afterwards. Finally, any change in medications can lead to an error: your doctor decides to switch your antibiotic or try another painkiller, and someone has to look at the last dose of the terminated drug when scheduling the beginning dose of the new drug. It gets complicated.


        "Those who can make you believe absurdities can make you commit atrocities." ~ Voltaire

        by KelleyRN2 on Wed Jul 28, 2010 at 06:33:49 PM PDT

        [ Parent ]

        •  I'm well-versed in all of the above (13+ / 0-)

          and I'm a veritable tasmanian devil when it comes to making sure I know what meds they are doing and at what time.

          When I was going through the chemo protocol with Doxyrubicin and Ifosfamide, over the course of five months and six five day hospital stays, I learned quickly which nurses knew how to stage the chemo bag changeovers and which ones were new at it. I had no qualms at all about advising the new ones when I saw that they were setting up drips incorrectly or setting the timing of the devices wrong (and it happened at least three times).

          I had my own schedule for getting the sheets changed and made sure this was done. The UW hospital is one of the very best, but they are still short-staffed and the nursing shifts are generally 12 hour shifts. No one can do a great job on that kind of schedule, especially after the fourth 12 hour shift in a row, which many of them worked.

          It will be harder for me, I suspect, to monitor what is going on after my surgery - at least while I'm in ICU, as I suspect I'll be pretty drugged up (and I'm allergic to morphine, so I don't know yet what will be used).  But I'm trying to instruct my kids to make sure that proper pain meds are administered in a timely fashion and that they get me up and walking as soon as possible to allay fluid buildup.

          This will be tough, I suspect. I'm at heart a supervisor, and I expect this surgery to inhibit my control in this.

          I will still request all my blood draw reports and the medicine charts as I always have. I don't know how that will go over at MD Anderson or whatever facility this will be done at (still unclear about whether it's Methodist or MDACC).

          I can tell you this, they will  not have encountered anyone quite like me. That sounds arrogant, but I know that to be true. I just hope I can maintain that attitude.  I need them to work with me, not just on me.

        •  More hospital advice (11+ / 0-)

          from a patient perspective:

          Bring a cheap tape recorder and as many books on tape as you can carry--beats trying to focus on a micro tv screen and the programming is better ):

          Get someone to bring you real yogurt as soon as you can swallow-helps chill all the nasty microbes all the antibiotics let loose.

          If you have a favorite gentle scented skin lotion it can help cover up the smell of the place.

          Sound blocking headphones and a sleep mask are really helpful to ameliorate the 2am wake up calls when the aide charges into the room, throws on the light and yells "who rang?"  also the headphones block out all the beeping and carrying on all your equipment does.

          Bring a couple of big long t shirts--much more comfortable to sleep in than a hospital gown and can be easily cut open in an emergency.

          Get the best drugs you can for when they pull the chest tubes--the rest of heart surgery is a piece of cake--except for laughing, coughing or heaven help you sneezing.  Get a firm pillow and hold tight to your chest for any of the latter two activities; and for the first few weeks once you have been sprung for riding in a car a tempur pedic pillow behind your back and a firm pillow under the seat belt on your chest will be worth their weight in gold.

          Oh and by all accounts MD Anderson is the best; friend of mine entered 6 yrs ago with stage 4 melanoma and is still cancer free today-whoopee!  So there really are medical miracles and that is a place they have been known to happen.

          Democrats give you the Bill of Rights; Republicans sell you a bill of goods!

          by barbwires on Wed Jul 28, 2010 at 06:53:37 PM PDT

          [ Parent ]

    •  btw, I wrote a post in January (14+ / 0-)

      that mentions The Patient Advocacy Foundation.

      Healthcare and you: be all you can be

      They are a good group and essential for the subset of our population that really, really needs third party advocacy within the circuitous, confusing, and unbalanced healthcare system we have.

Subscribe or Donate to support Daily Kos.

Click here for the mobile view of the site