Elaine
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Posts posted by Elaine
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http://www.yourdoctorinthefamily.com/gr ... index.html
I just spent the last three or more hours reading the link that I will provide. I am not advocating this Dr.'s solution--only because I have not had enough time to really think it through as one should do.
However, based on the discussion on this board that I came home to yesterday, and my sadness on learning that Dr. Joe has left the board, and that Cheryl and Jack are feeling hurt, I think that anyone who wants to know the ways things "are" in the health care/insurance business based on the way things "were"--from decades ago to recently, should take the time to read this intellegent and accessible explanation.
Yes, it IS long. Too long for me to summarize the way one ought to do.
It speaks of the "covert rationing" of health care. It speaks to the ways in which the relationship between Drs and patients has been torn assunder when the managenment of health care was turned over to business people instead of Drs.
This has caused a great deal of mistrust. Anyone spending time on this board can see it clearly--rationing does occur--and this explains why some get more care than others.
It explains HMOs and why they are now waning--but what is replacing them hardly is any better than what we had/have.
It substantializes what many of us have often suspected--and more--it tells an even deeper tale of how managed care really works and who it works for--It does not work for patients and it undermines the oath that Drs. take--leaving them between a rock and a hard place--
Drs are bought and they are bought subconsiously. Managed care is what encourages PCPs to view chronically ill patients as "difficult" (unless of course the PCP already has a long term relationship with a patient and his or her family.
To fully "get" the article would take more than the 3 hours I spent on it. But I will try to go back to it.
Yes, the author, a cardiologist, has an opinon. Those of you who might be put off by his opinon, I urge you to read it anyway--if for nothing else than for the "facts" he presents in support of his opinion.
His solution is just ONE solution. There are probably many others. But exposing the reality is one step to exploring solutions.
I also hope and pray that Drs as well as caregivers and patients will read this.
So like a bad penny, I am back.
But I hope that at least a few of you will have the time to read this.
I wanted to point out particularly eye opening sections, but I suppose anyone who just wants to skim around will find them.
As a whole, though, it makes the most sense.
http://www.yourdoctorinthefamily.com/gr ... index.html
love and fortitude
elaine
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Cathy.
I have been away for almost two weeks and just saw this post. I am so sorry for the loss of your dear husband and a father.
May you find comfort in memories, knowing he lives on in the hearts of those who love him.
love and fortitude
elaine
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I hope your parents are still there to help you both out. Also hope you are feeling better today--cos Karen needs someone to pamper her awhile.
HO HO HO!
Just love three year olds!
elaine
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Thank you Fay.
It is also an addictive substance. It is my understanding that it is not the nicotine that really causes lc, but the other chemicals used to process the tobacco and to turn it into cigerettes, that and the fact that a person is inhaling a burning substance--like many other heated substances are not good to inhale.
Nicotine is a poison when it is ingested or absorbed through the skin in a huge dose at one time. Small doses do not "poison" as it is a substance with a very short "life."--ironically.
I am not arguing here, and I am not defending smokers. The science of cigerettes is complex. Nicotine is produced naturally in several forms and is in all growing plants. The tobacco plant is unique in the way it "stores" nicotine.
It is a fact that cigerette companies consiously added more and more nicotine to their product in order to keep sales high. But a cigerette with very little nicotine would be just as deadly to smoke or to inhale in great quantities.
I am not a chemical scientist and thus don't really understand the whole molecular stuff, but I do not doubt that being around a person who has just smoked a cigerette can cause what Fay describes. Why else would she report this?
I still agree with everything else I wrote. It is cigerettes and addiction that is the enemy--not the smoker.
There are many people on this board, patients and caregivers, who still smoke. I assume this board supports them, but most of them are "closeted", just as most lc patients and families are.
If you want them to come to rallies and give dollars, they first need to come out of the closet. Beating them over the head with their behavior is not going to help, nor is talking about how easy it is to quit, or how harmful it is, or how much it hurts others.
I truly don't know what will "help"-- but I do know that most people respond to positive and supporting environments and people.
I guess I continue to misread the mission statement posted on this board--that talks about many other things about lc and the stigma and the lack of compassion and the lack of research funds etc. etc.
If we as people effected by lc can't come to peace about this subject that DOES cause stigma and DOES cause lc patients to be labeled and in many ways MIS-treated, then how can the stigma be erased?
The only way to come to peace about it is to discuss it. No one has to read it that doesn't want to.
I don't know why people stating their opinions is considered arguing. I don't know why some people take it personal if someone disagrees or perhaps misreads a post. I did not attack Bo, I talked about the attitude that he and others share.
Snowflake and I disagree about many things. On this thread, we disagree with who should pay to help smokers kick the habit. I, in no way, take offense at our disagreement. I doubt she does either.
Many people share BO's position about smokers and addiction. No biggie. I just disagree. For most people it is more than just the nicotine that is addictive--
Perhaps I misunderstood what Heather meant when she said that she will not be in a room with a smoker if she can help it--and maybe she meant to write a person who is actively smoking a cig--or who has recently done so.
Perhaps, I am guilty of intellecualizing as I read in the link that Donna posted. There are many levels of denial, I agree. I don't doubt that I am not unlike every other human being.
So, again I will sign off, pretentiously.
There's a whole thread or two on difficult patients--and I would say that much of why we are labeled is because of the stigma--that we caused it and now we want someone to help us.
elaine
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I PMed you. But I sure wish my mother in law would do steaks for holiday dinner! Yum!!!!
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Well, here's a toast to the end of the toasting of your brain!!
Thanks for sharing your ODDyssey (intentional misspelling)!
I think you should hang the mask in the gallery. Or give it to an artist who does collages--I've seen some really neat ones with "found" objects.
I wish for you the happiest of holidays and a healthy New Year!
love and fortitude
elaine
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Santa has a middle name and it is NED.
Glad to hear this great news!
elaine
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I can only imagine how you must feel. Keeping you and your son in my thoughts.
love and fortitude
elaine
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Good to hear from you and VERY glad to hear you are stable!
Lately when it's cold and gloomy I turn on the Travel Channel and hope to see some nice warm spot I can visit in my head.
Try not to let winter get you down. I have lived up north and I know how long it sometimes seems before spring arrives, but it DOES arrive!
Happy Holidays!
love and fortitude
elaine
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Angie
I am glad to hear your Dad is up and around. Prayers for your dad and uncle--and your whole family.
elaine
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Thanks for the HO HO HO. Your Faith is so lovely.
I am off in a day or so to see my neice's children, ages 3 and 1.
They sure do bring joy to the season.
elaine
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Curtis
Thank you for your wise beyond your years letter. I can't read it without crying but also seeing the reality that life does go on.
Keep learning from your Katie. She is your gift.
May your holidays bring you joy.
elaine
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Jane,
Just want to let you know that you have been missed. I hope things get better for you soon.
There's a lot on your table and you are a person who feels so deeply. But you are also very strong.
Your strength will carry you through.
love and foritude
elaine
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It's good to hear from you and that things are beginning to look up.
I know you miss your parents, but like you said they are together.
Thank you for the Christmas wishes.
love and fortitude
elaine
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Kim
I can really feel the hurt pouring from you. Family dynamics can be so difficult, and the holiday season often brings those pains to the forefront.
Is there any way you can speak to your mom about this? Can she speak to your brother?
My two "babies" have grown somewhat apart over the years. And I know that one thing I want so desparately is for them to hold onto each other and stay in each other's lives.
I can't imagine that your mother doens't feel the same way.
I also want at least one of my brothers to step in and be there for my kids, but I doubt that will happen.
I just pray my illness doesn't add any more separation to my family.
I wish the same for you and yours.
love and fortitude
elaine
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Ginny
Thank you so much for your continued support. I know it must sometimes be difficult to come here and be reminded of your own loss.
I know Earl wants you to find joy in every day.
love and fortitude
elaine
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So sorry Andrea. My best to the family and may they find comfort in their memories.
elaine
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Cyndy,
I am so saddened by Tim's passing. I am glad it was peaceful and that his family surrounded him.
May you and your family find comfort in your memories of your dear Tim.
elaine
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Cindi
I agree that it shouldn't matter to anyone if a person wishes to change Drs.
But if you type in "difficult patients" in Google, you will get over 4,000 hits--there are courses Drs take to learn how to handle "difficult patients" and how to spot them early on, and how to get rid of them.
Many of the articles talk about ways to turn difficult patients into "good" patients.
Some of the articles even talk about how sometimes it is the Dr. who is making things difficult and give advice to Drs. Glory Be!
There are whole lists of nicknames Drs give to patients--horrible names.
One of the attributes of "difficult patients" is patients with a terminal illness.
That alone can make a Dr see a person as "difficult" especially if the patient has seen several different Drs, which is always suspect, it seems by the things I read.
The one thing that is evident is that it is the patients, sometimes very sick or emotional people who get the label, and thus often the blame.
We all know that there are "Difficult Drs.", but there are no courses for us to take on how to deal with them.
Some of the articles focus on patients who are likely to "slap a lawsuit"--I would like to know where the information is that will tell me what Drs are incompetent and how to protect myself from those Drs.
People with the so-called "power" get to do the defining.
I do care about the label. I don't want that label dictating what a Dr does or feels about me--as that definately effects the care they render.
But, maybe some Drs are more "careful and thorough" with "difficlut patients." They ought to be that way with ALL patients.
Lisa, no one puts a stigma on a parent with an ill child who visits many Drs--it's almost required behavior for a parent if the child seems not to be Dxed correctly or is not responding to Tx.
Sheesh, they make made for TV movies about that!
But for adults--especially women, we get labels.
For me, it was best to address the issue up front, but not everyone will want to do that.
It felt right, because one way to a counter a label and the discrimination that goes long with it, is to redefine and use the word from the aspect of the one who is labeled.
In my case, I defined "difficult" as being a patient with some brains and a new found intolerance for BSing around (not the words I used).
elaine
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I know we aren't supposed to reply on the Ask the Experts threads, so this is in response to Fay's question there if anyone needs to know the context of what I am writing.
I was recently called "difficult" to my face by the medical director of the clinic where my second PCP, "Dr. Skinny" is employed. I know what a slap in the face that is.
I was called difficult because I questioned the Dr. (and who wouldn't if you have been following my recent posts), spoke to my HMO about her (which caused them to investigate) and demanded I be allowed to leave her care. I was also accused of Dr shopping since Skinny was my second PCP since DX.
When I got my records and hand carried them to who will become my new Dr., there was nothing in the reports that indicated that I was "difficult." --however, the first words out of my mouth to my new Dr was this" "I want you to know that I have been called a "difficult patient." She laughed (thank God!) and asked why.
I told her. Because I felt at ease enough to tell her and she could obviously see my distress, I think she is one of probably many, "right" doctors for me. I just happened to find this one.
I guess my point is this: when a Dr sees that a patient has seen other Drs, and several other Drs over the past months or few years, I think they will automatically think "difficult", so I think that a person should just address that up front with any new Dr.
It gets that out of the way, so to speak, and if the new Dr. does not seem empathetic to the situation, then I say go somewhere else because that stigma might be there, regardless if it is unspoken.
Further, when I saw all my records, I saw that the Drs reports did not adequately reflect many things. thus I prepared my own chronology, which my new Dr gladly accepted as part of my record.
Now, my troubles aren't over, not at all, but if I can just bear it out until Jan 1, then I will feel at least some confidence that I have a Dr who will view me as part of the team.
When I move, I will have to start all over, but I will follow my own advice until I find a Dr who I can trust.
I know Dr. Joe says that he doesn't have preconceived notions about patents who transfer to his care, but I think that many Drs do and if not consciously, then subconsciously. I think it can and does effect they way they respond to a patient.
Like I told the medical director, she can get my records from birth and see that I never switched Drs unless I had moved (once I changed Pediatricians for my kids), and that was not because I always LIKED my Drs.--but I did trust them and felt I could speak to them adult to adult, human to human.
What I found here was not in any way human to human. I wonder if it is the stigma attached to lc, that made the Drs, and nurses to a degree, treat me as they did.
As a side note, I did find that some earlier records from last year were falsified--to the point where things were crossed off, which I think is illegal and Xrays have "vanished." It does happen.
I don't plan to outlline what I think would be the best treatment to anyone. But I do plan to make sure that all options are covered, including no treatment.
All I can say is "THANK GOD" I will no longer be in an HMO in a month or so. It was and has been hard fighting on both levels.
elaine
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Thank you so much for your response.
I don't understand the following paragraph very well:
They(CT) can't see the inside of hollow structures that well but once their have been a few branching of the bronchial system, the hollow tubes rapidly become microscopic anyways. Virtual bronchoscopy has few advantages over a high resolution CT scan except for the ability to see the interior architecture of the larger bronchi.
The first sentence I don't at all understand. In the second, what are the advantages over HRCT?
Thanks again.
Elaine
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Sorry I am late here, but I have been missing posts.
I hope Bob has found out a little more about what is causing the pain and that it is being treated.
Well, you need to stay on your feet, Nell! Quit trying to walk on your knees! Seriously, I hope you are healing nicely and that you have happy holidays planned.
love and fortitude
elaine
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To echo Peggy, I, too, have been reading your posts each day of your journey. I haven't replied much to them, but I do want you to know how inspiring you are!
Your strength and attitude are amazing. You fought hard for this and you are fighting hard through it.
I thank you for being here for all of us and hope you find the support here you need, too.
love and fortitude
elaine
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http://www.news-medical.net/?id=6430
One in three smokers or former smokers screened for lung cancer at a baseline and one year follow-up visit using a recent advance in computed tomography tested positive according to a new study. Of those, 12 percent had lung biopsies, and 7 percent were diagnosed with lung cancer.
The findings, along with detailed characterizations of practiced follow-up patterns, appear in the January 1, 2005 issue of CANCER, a peer-reviewed journal of the American Cancer Society.
Low dose spiral computed tomography (LDCT) is currently being evaluated as a more effective alternative to chest radiographs for lung cancer screening through the National Lung Cancer Screening Trial (NLST). LDCT can identify small lesions than x-ray, however, studies have yet to show any improvement in lung cancer mortality using the test.
Paul F. Pinsky, Ph.D. of the National Cancer Institute in Bethesda, Maryland and his colleagues reviewed medical records pertaining to the follow-up of more than 1500 current or former smokers who received LDCT as part of the Lung Screening Study, a multi-center pilot study testing the feasibility of a large-scale nationwide trial. The researchers say 522 were found to have abnormal lung findings. Of those, 12 percent underwent biopsy, 55 percent had a follow-up CT scan but no biopsy, 12 percent were compared to prior x-ray or CT scan, 4 percent had only a clinical exam, and 3 percent received no follow-up. A total of 37 of the 522 subjects (7 percent) were diagnosed with lung cancer within a year of the first positive screen.
The investigators found that only a minority of subjects received a diagnostic work-up according to published algorithms. While biopsy was less likely the smaller the nodule size, surprisingly, the more positive LDCTs the radiologist identified, the lower the rate of the use of biopsy for diagnostic follow-up.
Also, few subjects received follow-up CT in the time commonly recommended for nodule size. For example, only 11 percent of subjects with 4-9mm nodules and 24 percent with 10+mm nodules received a follow-up CT within the recommended 4 months.
In describing the patterns of diagnostic follow-up for people with abnormal findings on LDCT, the authors conclude, the "data may be useful in estimating the potential burden and cost of CT screening and in evaluating whether practitioners are generally following reasonable procedures in their work-up of positive CT screens."
Trying to find my fighting spirit
in NSCLC GROUP
Posted
Cheryl
I never once thought that Jack's response was a personal response to Dr. Joe.
I am saddened that anyone, least of all Dr. Joe, might have construed it in that way.
I saw it as Jack talking about an issue much larger than a response to Dr. Joe. I hope that if you feel up to it that you will check out the link I put on a thread I started. Jack, too. Dr. Joe, as well. It really helped me to see some things more clearly.
I think managed care has also caused a great burden on Drs. Something has to be done and I don't know exactly what. I wish I did.
If Dr. Joe left the board for good, (and I pray he has not) I don't think it was because of ONE thing. I am sure many, many other factors played a part.
On a personal note, I hope you know that we are all standing beside you-- fighting for you, with you and because of you.
No one knows what it is like to be in your shoes, or in the shoes of any of us with this dreaded disease--and different for each of us, too. Likewise, as we don't know what it is like to be in the shoes of primary caregivers.
We are fighting side by side--and if one of us feels weak, then another of us will hold another up.
In this together, always.
elaine