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Professional Friction

Well, here we are more than three months since my appendectomy and the discovery of my anomalous growth, more than two months since I was first diagnosed with Pseusomyxoma Perotonei, more than a month and a half since I was first referred to Dr. Laura Lambert at the University of Texas Medical Branch, M.D. Anderson Cancer Center ... and I am still waiting as my "case is under review". Mentally, I appreciate the complexity, but after being told not to waste time in dealing with my situation, the delay is a bit frustrating, especially since so many unknowns remain. I need to see Dr. Lambert in an official sense (we have spoken by telephone) before I will know my surgery date, the specific procedures which will be necessary, and before I begin to discuss my situation with my insurance company's "Care Coordinator", which is a critical step. I will also need documentation from Dr. Lambert for my FMLA leave from work, and to get my home ready for the post-operation changes in my lifestyle, and to plan for whatever specific rehabilitation will be required. It's a bit frustrating, all this waiting.

The thing is, it really cannot be avoided. M.D. Anderson is a big place with a lot of patients and providers, but a whole lot more prospective patients who are trying to get in. One of the disadvantages of going to a top-rate place for Cancer treatment, is that everyone wants the best. Also, with as many types of Cancer as there are, and the risk of misdiagnosis and the serious consequences if an error leads to the wrong action, a preliminary review is very important to the process. I was fortunate enough to speak with a Registered Nurse in the Gastro-Intestinal section, who confirmed that my records are complete, that my designation as Doctor-Referred is now correct, and that Dr. Lambert is reviewing my information along with two other doctors. This helps doctors determine some of the finer points and answer early questions, I think. So as much as I hate to wait, it makes sense, and I have been promised by a number of people that once I am in the system, the results of all these preliminaries will show in the success of the treatment.

Knowing this, I find that I am forced to reconsider my opinion of Congress. Like the staff at MDA, the people in Congress and their staffs are generally well-intentioned and hard-working, and the results we see are more to do with the conditions under which they operate, than from a true negligence on their part. Certainly, Congress has its share of ne'er-do-wells, but on the whole they are doing their best with difficult conditions and inconstant support. I'm not so naïve as to ignore deliberate dishonesty, but just maybe I will be a little slower to start with that judgment as an assumption.


Comments (18)

If I were in our position, ... (Below threshold)
Lee:

If I were in our position, DJ, I would try to take some solace in the delays, seeing them as indications that your situation is not so severe and threatening that there is a mad scramble to get you into the operating room and start cutting.

I know that may not offer much comfort for your frustration over the delays and as yet unanswered questions, but I hope you do take comfort in the knowledge that there are many, many people out here -- people you've never met -- who are praying and pulling for your complete recovery.

I've enough personal experience with serious situations like this to know that maintaining a positive attitude and keeping your eye on the goal of licking this thing is really, really important. Try to focus on the positives, and hang in there!

A commendable attitude, but... (Below threshold)
wolfwalker:

A commendable attitude, but at the same time you shouldn't wait too long.

I knew somebody once who was diagnosed with a serious but treatable form of stomach cancer. For three months she underwent a series of treatments including both radiation and chemotherapy. When they checked on the results, they found the cancer had been misdiagnosed, and was in fact far more malignant. While they'd been treating for the milder type, the real cancer had spread bodywide. Three months later she died.

It's entirely possible, probable even, that the cancer was unstoppable, destined to kill her from the start. But I'll always wonder: if it had been diagnosed correctly when she first went to the doctor, could she have been successfully treated?

Wow, and I agree that you n... (Below threshold)
Lee:

Wow, and I agree that you need to be vigilant, and I would definitely recommend, DJ, that -- in addition to practicing your own due diligence -- you also seek out a trusted friend or adviser to act as your advocate in aggressively questioning treatment decisions and timelines.

You and your immediate family members, being as close to the situation as you are, may lack some objectivity -- I'm not suggesting that you and your wife, etc. should not question matters -- just that someone with more distance might be helpful too. In the matter of my own recent, serious hospitalization my brother-in-law. who's a doctor, grilled my surgeon the day before my first procedure, and came back with a glowing recommendation on the doctor and his course of action. That was a great comfort.

By all means also get second and third opinions as well.

And mistakes happen way too often in hospitals. These days a patient who is going in to surgery to have their left leg amputated is wise to take a permanent marker and write "THIS LEG" on his left leg in big bold letters, and write "NOT THIS LEG DUMMY -- SEE OTHER LEG!" on his right leg.

I know it sounds funny, but it's no joke! -- I wish you all the best on your speedy return to health, DJ.

Again, Mr Drummond, you hav... (Below threshold)
Shane:

Again, Mr Drummond, you have my best wishes and prayers.

Lee, I have had a couple of operations on my left arm in the last year. In both cases, prior to starting any meds, the surgeon asked me to mark the injured arm with a sharpie.("please cut here")

Error reduction in medicine... (Below threshold)
epador:

Error reduction in medicine would be covered in volumes of work. Anecdotes from a lay perspective are hardly useful, other than to demonstrate how just a little misperception can lead to undeserved skepticism and distrust.

I think the topic here is rather DJ's appreciation for caution and thoroughness, as well as demand outstripping supply, in quality medicine. Imagine if the same difficulty and delay occurred to have even routine care. Like in Canada or the UK. But I digress.

The quality of medicine practiced at MD Anderson exists only because of the large amount of money AND BST [blood sweat and tears] invested in the institution over decades. It has nothing to do with government decrees.

The quality, or lack thereof, in the works of Congress, paradoxically, would seem to be degraded by the money thrown around drowning out the thought and reason behind well-intentioned legislation.

DJ needs a lobbyist or two at MD Anderson! I'll work for free.

The first comment above say... (Below threshold)
Old Coot:

The first comment above says it best. And having said that, I am now going to seek some medical attention for myself ;-)

And I'd feel free to follow... (Below threshold)
John:

And I'd feel free to follow up from time to time. Paperwork sometimes lays around on someone's desk who may view seeing patients as more important than "routine" paperwork. Or somebody goes out of the office for a few days. When "paperwork" goes through 5 people, and it sits around for three or four days in each location, boom... you lose 2 or 3 weeks. In my case it took about 3 weeks to get my prescriptons transfered between pharamacies. Should have taken a few days... Harrumph.

Keep on 'em. You're in a partnership with your healthcare providers, and keeping the paperwork moving is something you can help manage.

I can't even begin to imagi... (Below threshold)
Lizzie:

I can't even begin to imagine how hard this must be for you and your family. It's amazing to me that you feel able to share it all with us
- and thank you, because it's giving us a real insight.

(On the positive side, at least you're not stuck with the NHS. I'm currently fighting my way through the system and it's dreadful - on the tenth of January a specialist made a tentative diagnosis of a pituitary adenoma, and on the 20th of January I received notice that my first appointment with Endocrinology is the second week in March. God only knows how long I'm going to have to wait to have an actual scan. It's a good job these particular tumours aren't usually fatal, eh?!)

Lee's advice to get someone... (Below threshold)
Brian the Adequate:

Lee's advice to get someone without emotional attachments to help you evaluate the medical information given you is quite sound.

Having watched my Mom do that service for several friends and family, I would further Lee with the suggestion that experienced nurses are a good place to start. They generally know almost as much as the doctors, are not intimidated by doctors and are usually MUCH better at translating from doctor to English.

John's advice is right. Don... (Below threshold)
Brian:

John's advice is right. Don't pester, but do follow up and ask questions. Ask "when", and when "when" comes and goes, remind them and ask "when" again.

As for Congress, there is one aspect there that I hope doesn't derail the medical community too much, which is prioritization. Too often Congress takes too long not because they're being cautious and thorough, but because they're distracted by too many other unimportant things.

DJ,You have been g... (Below threshold)
Imhotep:

DJ,

You have been given some excellent advice here today.

Also, I would bet that 90% of the "paperwork" could be filled out by you. The other 10% can be completed by your 'provider' at the time of your visit. This simple move speeds up turn-around time on stuff like FMLA paperwork.

(When my patients have it filled out like that, I sign it and make a copy for their chart.)

Good luck.

Go to MGH... (Below threshold)
Robert:

Go to MGH

Now now Robert, while your ... (Below threshold)

Now now Robert, while your advice may be sound, it smacks of provincial arrogance. Of course MGH is one of the finest hospitals in the country, but Texas has its own creme de la creme (e.g. Rice), and DJ knows his way around.

We're praying for you, brother Drummond.

DJ - the fact that you're b... (Below threshold)

DJ - the fact that you're being treated at MD Anderson speaks volumes; they're simply the best. By a mile. Good luck brother.

"the surgeon asked me to ma... (Below threshold)
Matt:

"the surgeon asked me to mark the injured arm with a sharpie"

That made me laugh. After my elbow surgery last summer, I spent three weeks trying to get the bright blue "Yes" and "No" off of my right and left arms, respectively.

Good luck, DJ.

DJ, Don't forget -- the sq... (Below threshold)

DJ, Don't forget -- the squeaky wheel will get the grease. Not that you have to pester, but it certainly doesn't hurt to confirm your appointment details, at least weekly.

While you're waiting, do as much prep as you can. Learn the terminology, review your previous test records, write down your questions.

And -- find other patients who have been similarly diagnosed (there are some great online support groups) -- they can help you formulate questions and expectations. Good luck to you!

I don't (yet) know you as a... (Below threshold)
-S-:

I don't (yet) know you as a blogger, DJDrummond, but I want you to know that I pray for you and your good health and that you keep your eyes on your own care, as you seem here to be doing -- it's important to lead on your own behalf, very often, with a willingness to encourage practitioners to do their best (and be conscientious about your needs).

I will include you in my prayers. Be well, have faith (I know from what is said about you here that you do).

About the after-surgery home issues, it's important to get all that out of the way before surgery and then to just come home and do your best to recover. I bet you're thinking along those lines, anyway, already. God bless and I'll pray.

"the surgeon asked me to ma... (Below threshold)
-S-:

"the surgeon asked me to mark the injured arm with a sharpie"

Surgical nurse is supposed to do that...after asking you to declare/confirm which arm (whatever) is of issue at that procedure. Because, otherwise, any patient who has the misfortune to mark themselves with a Sharpie could be in for a surprise.

The point is, the declaration should be witnessed, is supposed to be witnessed, by a third party (other than you and the surgeon, you should announce/confirm to a third party present at the procedure which arm/whatever is of issue before the procedure occurs).

DJ, make sure you have copies/documentation of everything. I bet you know that already, too.




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Editors: Jay Tea, Lorie Byrd, Kim Priestap, DJ Drummond, Michael Laprarie, Baron Von Ottomatic, Shawn Mallow, Rick, Dan Karipides, Michael Avitablile, Charlie Quidnunc, Steve Schippert

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