doctor screw ups - BIG ones

[MIch elle]

I just found out that my sil - mil had lung cancer after the doctor told them for SIX months that it was bronchitis! She died last week (very soon after lung cancer was found).

 

My mother was diagnosed with severe degenerative disc disease by her oncologist (3 yrs after her breast cancer) and it was BONE cancer (I took her from NJ to MA to find this out). She died 1.5 years after the diagnosis of bone cancer. She suffered terribly before & after the diagnosis of bone cancer (never mind the breast cancer yrs before).

 

I don't understand how doctors could screw up SO badly. :confused: I haven't trusted doctors since my mother's death (15 yrs ago).

 

Has this happened to your family? How do you plan to protect your family in the future from this happening? My plan is to ALWAYS get a second or third opinion!

 

WHY DO PEOPLE TRUST THEIR DOCTOR WITH THEIR LIFE?? :crying:

 

:bigear:

[Dobela]

I trust doctors because they have more knowledge than me. however, I do lots of research myself so I can be more knowledgeable and ask more of the right questions. I also ask for second anfd third opinions when I don't feel that I am getting the right care.

 

My mother almost died from a misdiagnosis and a doctor that really didn't care what was happening to her after she began having a life threatening reaction to a drug she should have never been on anyway. To get the correct diagnosis and help we took her to a new hospital an hour away.

 

I don't believe doctors to be mistake free and because of that I act accordinginly. However, I do need their knowlede base and find that most I have worked with to be good, honest, and worth my trust.

[specialmama]

:grouphug: I am so sorry. I have heard of this happening many, many times. I'd venture a guess to say that it is the norm now. But what I'm talking about is not a mistake on their part, it's them knowing that the cancer is terminal and that no amount of treatment will help or even prolong life. They stall for a few months (or however long, it varies case by case) and then tell the person so they have a shorter amount of time to say their goodbyes. I know, it's a moral thing. I would want to know beforehand, and I don't know why they think they're doing the right thing by withholding information, but this has happened too many times to people I know that this is the only viable conclusion. A doctor my mom knows admitted that it seems to be the norm, but that most doctors will not admit to it. :grouphug:

[OH_Homeschooler]

I know, I really wonder sometimes. I go to a doctor when I'm concerned but not without having done some research myself and asking the doctor specific questions. I believe doctors really need more continuing education. Sometimes I feel like I'm more up to speed on recent research than doctors (about the things that interest me).

 

My mother was told for years she had gall bladder issues and a hiatal hernia when in fact she had heart disease and needed a bypass surgery. The heart diagnosis was about 10 years ago. I learned a huge lesson from that...doctors are not always the ultimate authority.

[Teresa in MO]

I have a dear friend, a former homeschool mom, that just found out 2 weeks ago that she has cancer of the kidney. She had gone repeatedly to her primary doc the past 6 months for blood in her urine.

[Mommyfaithe]

yes...the doctors totally missed my father's cancer....he died within 6 mos.

 

Recently, doctors missed ds's Lynme disease. The poor kids suffered for a year before they finally (after I blew a fit and MADE THEM do a lyme titer...Western Blot test.) It came back extremely positive. He did the anti-biotic course, but there was nuerological damage (I don't know HOW permanent yet) and physical damage (permanent????) He also lost 4 months of school, training and ended up depressed.....OY!!!!

 

This was all just awful.

 

Faithe

[Stacey in NY]

I am so sorry this happened to your family:grouphug: I too am not trusting of doctors, my father had a stroke at the age of 55 because he was prescribed a medication (cumidan) and then not monitored. He is now severely disabled all because of a doctors lack of care/knowledge?

 

I totally agree with getting a 2nd or even 3rd opinion. It has been my experience that when you ask for this most doctors really get offended, which I find very irritating and insulting. The God complex that so many doctors have is just another reason I distrust so much. This issue is a constant struggle for me as I have a few chronic medical issues, and therefore can't just avoid doctors. Sure wish I could !

[Quad Shot Academy]

This is what I can't stand about doctors. The act like they have definite answers and like you are a terrible person if you question them. I have not had anyone die, but I have had permanent repercussions from doctors that were arrogant. It is so hard to know when to take a doctors opinion and when to get a second or even third opinion!

:grouphug:

[CalicoKat]

I was treated for asthma for several months before I was diagnosed with congestive heart failure due to a leaking mitral valve.

 

Lack of trust is probably why I start to hyperventilate whenever I have to go to the hospital, doctor's office, or ER.

[Dobela]

I also think that we sometimes spend too much time with one doctor who isn't a specialist. Our bodies are very complex and there are a myriad of things that could be going wrong. A good PCP has lots of knowledge in minor areas and a much smaller amount in specific areas. Many times they are expected by insurance companies to rule out every conceiveable minor issue before sending us on to a specialist. The specialist, who knows much about 1 area will have a very different set of background information and can make a very different diagnosis.

 

Some physicians are just overworked and overwhelmed. Has anyone been hearing about the shortages of general health physicians and pediatricians? I think the misdiagnosis situation is just going to get worse. Besides what can be accurately diagnosed when you are given 15 minute spurts to tell what is happening?

 

In my mom's case, the misdiagnosis was due to a jerk physician. My dd3 suffered with aspiration for the first year of her life. Even though I knew something different was wrong, I often couldn't go beyond the PCP. The PCP is one of those wonderful drs but she was being held to a checklist designed by someone in the government to eliminate waste.

[AuntieM]

My father had what I believe was unnecessary brain surgery and spent years classified as an Alzheimer's patient when he really had a different, totally treatable condition. By the time that was figured out, he was beyond rehabilitation.

 

I do not hold one doctor accountable for this, but rather a system that sends senior citizens running around to a number of specialists who may or may not be totally on the same page as one another. A system that makes it easy to get respite care for one diagnosis and gives no aid or respite care when the problem doesn't fall into a neat box. Combine that with the mindset of many in my parent's generation who believe that a doctor is an authority figure beyond questioning, and these things happen. Probably quite often. It is very sad.

 

One of my biggest regrets about not living near my own extended family is that I could not be there on a regular basis to serve as a patient advocate for my dad years ago, and now, for my mother, who could really use one.

[Danestress]

All I can say is that doctors are humans. They are not perfect. The standard of care can't be "perfect" it has to be "not negligent." The thing that most bothered me about it was the lack of transparency and honesty about what happened, but even so, I do understand that if the doctor had said, "I think we did something that made this worse" we might have gone ballistic. He doesn't know that I am reasonable and understand reasonable errors and that I know that doctors are not omniscient. They are working with information that isn't always easy to read.

 

Sigh. It's hard.

 

Doctors carry medical malpractice for a reason. Because they are not perfect and patients need to be able to recover for instances of malpractice. But some of these mistakes would be hard to describe as malpractice anyway.

 

I don't totally trust anyone about anything, but all in all, I consult doctors because they tend to know way more than me about that which I need help with. I am taking my son to a doctor today. I don't think he's a God. I don't think he's perfect. If he says something that I just don't think feels right, I will question it and follow up. But I think I have a much better chance of getting the right help from a doctor than from any one else I can think of.

[aggieamy]

That's very sad. I have a story on the other end though. When I was 17 I was trying to get into West Point and went for a military physical. My blood work came back positive - basically saying I was pregnant. I knew that I wasn't so the doctor ran a few more tests. Then they sent me over to the military hospital to run a few more tests. And an MRI and then a CAT scan. Turns out I had ovarian cancer and a week or two later and I would have been gone. They did surgery first thing the next morning, right there in the military hospital even though I wasn't military, and found a tumor on each ovary. One was the size of a grapefruit and the other the size of an orange. I had no symptoms and never felt bad.

 

If it hadn't been for those doctors being very dilligent about trying to figure out what was wrong I'd have been dead. I think back to how easy it would have been for any of them to send me home and tell me to make an appointment with my regular doctor.

 

There are some really good doctors out there. I'm sorry that so many people have had bad experiences.

[mo2]

I also think that we sometimes spend too much time with one doctor who isn't a specialist.

 

 

But this can swing too far the other way, too. When you see a specialist, their knowledge is pretty much confined to one body system. They can sometimes dismiss seemingly minor or unrelated symptoms that could, in fact, lead them to the bigger picture. (In rereading this, it doesn't sound exactly like I want it to... I hope you can read what I mean.)

 

In my opinion, too many people are afraid to question their doctor. I value my doctor's opinions because they know more than me about the human body and disease processes. BUT I am not afraid to talk to them, ask questions, make suggestions, or ask to see a specialist. If I truly disagreed with a doctor, I would seek a second opinion. I am fortunate in that my doc and my kids' ped both seem to value my opinion.

 

Doctors are not infallible. They have the training, but they ARE only human. They can make mistakes, too. It's sort of like when you take your car to the mechanic (only, obviously, much more important). If the mechanic says they've fixed your car, but a few days later you find that the problem is persisting, what do you do? You go back, right? You tell the mechanic, "Look, I don't think you fixed the problem completely. Maybe you need to look for something else."

 

For the record, my dad's cancer was overlooked for a long, long time by a PCP who was just used to treating minor problems and probably didn't even think that it could be something major. He ended up dying from the cancer. Am I pissed? Yeah.

[mo2]

That's very sad. I have a story on the other end though. When I was 17 I was trying to get into West Point and went for a military physical. My blood work came back positive - basically saying I was pregnant. I knew that I wasn't so the doctor ran a few more tests. Then they sent me over to the military hospital to run a few more tests. And an MRI and then a CAT scan. Turns out I had ovarian cancer and a week or two later and I would have been gone. They did surgery first thing the next morning, right there in the military hospital even though I wasn't military, and found a tumor on each ovary. One was the size of a grapefruit and the other the size of an orange. I had no symptoms and never felt bad.

 

If it hadn't been for those doctors being very dilligent about trying to figure out what was wrong I'd have been dead. I think back to how easy it would have been for any of them to send me home and tell me to make an appointment with my regular doctor.

 

There are some really good doctors out there. I'm sorry that so many people have had bad experiences.

 

 

Thanks for sharing. It's important to remember all the GOOD things doctors do for us, too.

[Murmer]

My story has a happy ending but it took over 2 years of symptoms and over 12 weeks of appts before we TOLD the doctor it was a milk allergy and substance she had had since birth. I don't trust doctors either. I now go in with ideas of what is going on and talk through all of them with the doctor...and I go back until I get an answer that I feel is right. But it is scary. The most important thing to remember is Doctors are human like us...they have families and lives and this is just their job albeit an important one but it is still just their job.

[littlebug42]

I have had good and bad experiences with doctors. I have learned that I can trust when earned but I no longer blindly trust doctors just because they have an MD behind their name. People give me grief all the time because we take our daughter to an orthopedist 6 hours away for treatment of her clubfoot because there truly are no closer doctors that specialize in clubfeet in the same way and none that I trust with my daughter's future. We drive an hour for other specialist care because I do not trust the Children's hospital in our city after several bad experiences. I have excellent doctors for her now but we have been through many to get there.

 

On the other side, my Dad died last year and I firmly believe that his chemotherapy and poor management thereof are what killed him. I believe in my heart that if he had allowed us to transfer his care to a different doctor/hospital, he would still be alive today. We actually had one of his doctors threaten us with performing a potentially life threatening procedure on our Dad if we didn't shut up, tow the line and quit bothering him. Another promised us that my Dad's leukemia would not be what killed him and yet one week later, he was dead from complications from the leukemia/chemo.

[Tammy]

when they do 'misdiagnos' you.....you don't get your money back....so you go back and PAY AGAIN.....

 

.

[fhjmom]

I have had both good and bad experiences with doctors. I think the way health care is set up in the US with so many restrictions and guidelines about treatment, billing, etc. have put many good doctors in bad situations. I am not saying there aren't bad doctors, I know their are, but I have honestly seen many more good ones in my experiences.

 

Like my gastrointerologist: I was scheduled for a full endoscopy and while I was in the surgical prep area, insurance denied all but a lower scope. I had already been through a night of *H#LL* with the prep required for a GI scope and at that point I would have rather just died than go through that again, I felt so bad. My doctor told the nurses, I don't care what insurance pays, we will do the full scope and bill for what insurance approved and worry about the rest later. He never billed me the difference.

 

Or DS's pediatrician: After a horribly traumatic birth, the dr. was concerned about DS's bilirubin levels on discharge. He had us come in the first thing the next morning to re-check them and they were elevated more. The "textbook answer" was to send us home with a bili-light. Because of my pain levels, first-time mom with a lousy husband (who is now an ex-) and he could just tell that things were "not right", the dr. readmitted us, I mean DS, but instead of putting him in the nursery, he had him admitted to a room so I would be able to stay with him the entire time in a real bed, even though only DS was the patient.

 

I will rant about the horrible ENT when I first suspected I had hearing loss. He was horrible, rude, refused to answer my questions (because he wouldn't admit he didn't know the answers) and left me with no knowledge about my condition or any hope that anything would help. I spent years spiraling into a depression as hearing loss cut me off from the people around me. Then I found a different, wonderful ENT that I could spend several pages telling you stories about how he has been a God-send for our family.

[Greta]

Michelle, I am so sorry for your losses. I, too, have lost people that I love because of incompetent doctors. My grandmother was in her sixties, with a family history of diabetes, gaining weight and always running to the bathroom. But this went on for FIVE YEARS before her doctor tested her blood sugar levels. Once she knew she had diabetes, she followed the diet very strictly and took good care of herself. But the damage had already been done and she died of a diabetic stroke.

 

My grandfather also saw his doctor numerous times over the course of two years, complaining of what we later found out were the classic symptoms of lymphoma. The doctor told him nothing was wrong with him. He got so sick that he ended up in the hospital, and only then did they realize his body was riddled with cancer. He died less than two weeks later, and I've always wondered if he would still be alive if the first doctor had actually done his job.

 

My husband's father went to a doctor because he was concerned about some strange black spots growing on his back. The doctor said they were nothing to worry about, didn't even bother to biopsy them. They were melanoma, and he died.

 

Right now, another doctor is trying to kill my other grandmother. She is 95 and in amazingly good health, but he's got her on statin drugs. It makes me so mad I could cry. My mother and I have tried to tell her about how dangerous and pointless this is, but she trusts her doctor. Once my poor grandmother had a terrible reaction to drugs that he prescribed her which were not supposed to be prescribed together. My Mom joined her at the follow-up appointment with her regular doctor, after she got home from the ER (yes, it was a very bad reaction!). My mother gently pointed out that the warnings that came with the drugs said they were not supposed to be used together. He rudely told her that THAT was not why my grandmother had gotten sick and stormed out of the room. He's beyond incompetent. He just does not care. And I can't for the life of me figure out why my granny keeps going to him!!!!!

 

Just a couple of weeks ago, my mother lost a family friend of many years. He was due for surgery, and the surgeon told him to keep taking all of his regular medications. After the surgery, he began vomiting blood, and his wife frantically called a nurse into the recovery room. The nurse said that was "normal" and left. He died. One of the medications that the doctor had told him to keep taking was a powerful blood thinner which should have been stopped two weeks prior to the surgery.

 

So I agree with you 100%. I do not trust doctors. I've found one that I really like, but he's human, he will make mistakes. Anything more serious than a routine infection or virus, I would get a second opinion.

[carolinagirl]

Chalk me up to the 'not so-trusting anymore' crowd. My stepdad (and truly he was a second dad to me since he married my mom when I was 2) spent a year going to a specialist. He was diagnosed with black lung but when he kept growing progressively worse, to the point where he knew he was dying even when the doctor kept saying he wasn't...they blamed it on him. They said 'you're not exercising enough, you're too overweight (he was **** near skeletal! and he couldn't exercise because he couldn't breathe). Finally, his GP grew so concerned *he* ordered a cat scan. All us kids flew out for the same week to be with him based on his feeling that he wouldn't make it to his birthday (about a month later than our visit). Friends and family flocked in to see him. The week we were there he was going to turn down the cat scan but we pressed him to go, feeling maybe there was some underlying treatable cause. He went right after we left, on a Friday. He got the results on either a Tuesday or a Wednesday the next week that his entire body was riddled with cancer (ultimately it was decided it originated from the pancreas). He slipped into a coma Weds. evening and died Thursday.

 

I really have no words for how I feel about his 'doctors'. He'd also been seeing specialists in another state before they moved because he just wasn't feeling well.

 

In the end, I'm partially relieved he didn't know. I think if he'd found out a year earlier, he would've lived a shorter amount of time and been in more pain from the cancer treatments. But on the other hand, I'm upset that his specialist mishandled his health so terribly and made him feel like it was *his* fault that he was going downhill so fast.

 

Bottom line -- I don't trust doctors. I don't think they truly look out for the patients anymore, it's too much about money. And if the answer isn't obvious, they won't spend the time to find out the cause or just even be honest and say 'I don't know'. It's always the patient's fault.

 

Signed, still hurting... :(

[TravelingChris]

I am a chronically ill patient with numerous medical issues and my kids have medical issues too. I educate myself. I only have doctors who will talk to me as an adult. THe doctors I have always like it that I know a lot. It helps them since I am a very complicated case. Some doctors like hard cases. Others don't. I go to ones who do. No, the pediatrician in FLorida did not find my dd's osteoporosis. But I know he was doing the right things. Her osteoporosis without other factors is very, very rare. I don't blame him at all. He did all the preliminary work. It was her getting a few more fractures and a new pediatrician here who asked if she had had a bone scan. She hadn't and it turned out to be abnormal. But even when we had that, one specialist thought it was nothing. Now we have one who knows it is something. I don't keep unknowledgeable or unhelpful doctors. It is why I told my dh to not take medications he was prescribed unless he got a better answer for why he should. According to all the medical literature I was able to find, he isn't a candidate for medication at all.

 

I check my doctors. I use screening services, I ask my doctor who I do like and trust who to see, etc. Then I try them. I have had jerks but not for long. I don't see them again.

[Sophia]

I'm so sorry.

I agree that it is wise to seek second opinions and do your own research.

 

I never go to the Dr. without a list of questions that show I have done my own research, and it never fails... docs slow down and give me more time when they realize I'm not passive about my own or my dc's healthcare.

[Denisemomof4]

I just found out that my sil - mil had lung cancer after the doctor told them for SIX months that it was bronchitis! She died last week (very soon after lung cancer was found).

 

My mother was diagnosed with severe degenerative disc disease by her oncologist (3 yrs after her breast cancer) and it was BONE cancer (I took her from NJ to MA to find this out). She died 1.5 years after the diagnosis of bone cancer. She suffered terribly before & after the diagnosis of bone cancer (never mind the breast cancer yrs before).

 

I don't understand how doctors could screw up SO badly. :confused: I haven't trusted doctors since my mother's death (15 yrs ago).

 

Has this happened to your family? How do you plan to protect your family in the future from this happening? My plan is to ALWAYS get a second or third opinion!

 

WHY DO PEOPLE TRUST THEIR DOCTOR WITH THEIR LIFE?? :crying:

 

:bigear:

 

Michelle, your post has me VERY emotional. Let me start off by saying that I'm very sorry this has happened to your family. I don't understand it.

 

My father had COPD/emphysema. About a month before he died, he was not doing well AT ALL. He had at least two series of chest x-rays, not to mention the NUMEROUS x-rays over the years. He got so bad one day that he couldn't breathe and was taken by ambulance on a Sunday morning to go to the ER. He was horrible, hallucinating, etc. He was blue. The first x-rays were taken and the dr. told me that he had pneumonia. No surprise, this was something we all had sadly become accustomed to. A few hours later the ER doc told me he thought there could be a mass in his chest. By the end of the day we were told he didn't have pneumonia but that he had a mass in his chest. Monday he had an MRI and we were told he had very little time left, his ENTIRE chest cavity was a HUGE cancerous mass. He was due to be released Tuesday and he died minutes before the doc came to let him go home.

 

I went to the dr at age 33 and told the dr that it felt like I was having "tremors" in my brain. I wasn't having dizzy spells but these tremors that would come and go. The dr. asked me what I did for a living. I told him I was a SAHM and he told me to go out and get a job and to stop dreaming up conditions and diseases that I didn't have. He then too my blood pressure and my reading was 170/98. I've been on bp meds ever since. And I never saw that pompous *ss ever again.

 

I took dd10 for an MRI a few years back. We were told that she had a brain abnormality. We were told she was having seizures. We were told many, many things. We took her into Boston Childrens (the first hospital also has an excellent reputation with people travelling from all around the world to go there for treatment) and they said dd's head was slightly turned during the MRI and that there was absolutely NO abnormality. We freaked out for weeks while we waited for the appt.

 

I have serious, serious deficits from my numerous concussions. My MRI's are clear and I keep getting told I'm fine. I live with my deficits every stinking day. My dh sees my struggle. I went for EIGHT HOURS of neuro testing, only to be told my IQ and other things are totally normal, but likely were higher functioning before my concussions. Duh. Thanks SO much for that helpful information.

 

I can not find good doctors. I have had ONE I adored and she refused to stay local. She wanted to move to the country and work in a slower paced office where she could spend time with her patients. In her office here, she was forced to rush through every visit so she could move people through quickly. Money, money, money. She didn't get into the profession for money, she did so to help people. So she left. She was the ONLY good dr. I've ever had.

[wy_kid_wrangler04]

I know exactly what you mean. People (Drs, nurses) makes HUGE mistakes and its potentially fatal. My dad died 3 1/2 years ago in the VA hospital because they mixed up his medications and his roommates and the meds they gave him reacted with his already in his system. NOTHING he went in there for was life threatening. He was due to be released within the week or so. THEN they didnt even realize he had died for 7 hours. They just kept "letting him sleep" Worse of all, we contacted 4 lawyers and no body would touch it because it was the government. They gave my dad the wrong meds and he is dead because of it and nobody was ever held accountable. The same staff is still there. They dared to tell me- "Ma'am, everybody is human, we all make mistakes" Well because of their "human mistake" my dad died at 52.

 

 

This was 6 months before we moved out of state

 

http://nl.newsbank.com/nl-search/we/Archives?p_action=doc&p_docid=1227277708260388&p_docnum=15&p_theme=gatehouse&s_site=HSHH&p_product=HSHH

Edited September 13, 2010 by wy_kid_wrangler04

[Mrs Mungo]

I was repeatedly dismissed as an overly worried mom when my son's first lung infection was not clearing up. He has permanent lung damage as a result of not being treated.

[Denisemomof4]

My best friend for the past 35 years called me crying yesterday. Her closest local friend, age 49, died suddenly last week. She had been suffering from severe migraines for a year and a half. The drs never did an MRI. Her most recent migraine was so bad that her sister told her she needed to go to the ER. She collapsed in the lobby and died of an aneurysm. I was SHOCKED to hear that nobody EVER did an MRI on this poor woman. I got my first migraine at age 36 and the first thing they did was an MRI. This woman was 47 or 48 when she got her first and they never checked?

 

I especially *hate* this medical facility...... they also missed cancer in my bf's father and he died a slow, excruciating death. His back broke when the cancer spread to his bones, and the entire thing was horrific and should have never happened.

[Kim in Appalachia]

When my brother was 2 1/2 he started getting very sick. He was tired, throwing up, seemed very ill. My mom took him to the ER one night when he was extremely bad (this was the 70's, before doctors had answering services or were on call all the time). The ER told her he had the flu. My mom knew they were wrong. The next week she took him to our family doc (who was an incredible guy!). He told my mom that he couldn't see what was wrong, it did seem like the flu, but that my mom knows her child best. If she felt there was more to it, then it should be checked out. He recommended where to go for tests (this is also before referrals, and they had to pay for the tests!). It turned out he had a brain tumor. My mom picked up on it quickly.

 

Our family doctor always told my mom to follow her gut and not to back down. Sure, she could be wrong, but it was his philosophy that most people knew themselves well enough to know when there is something wrong. Of course there are people who aren't really as ill as they think, but most people don't want to be put through tons of tests for no reason.

 

Michele, I'm sorry for your lost. It's frustrating when someone you love doesn't get the best care. I would think lung cancer would show up on an X-Ray, which should have been done on someone with bronchitis for 3 months. But I don't know, maybe it was hard to see and if someone is not a smoker most docs don't think of lung cancer. (I've been told lung cancer among non-smokers is becoming more prevalent, thanks in part, to radon).

 

Missing bone-cancer is rough. Most people would only have the degenerative disease, few have bone cancer, but that's where you have to have an aggressive doctor who runs every test and looks for everything that could be off. I know my mom just went though all of those tests. One of her markers (in a blood test) was just a little off, and her doctor decided to play it safe and sent her for further testing. I know her former doctor would not have done that. He was more of the opinion that those things are the outside possibility and it's a waste to test for them.

 

It's hard, we look to doctors for answers, and we expect them to give us those answers. When they don't or can't it's disappointing and frustrating. I try and keep in mind that I am working with my doctor. Don't competely depend on him (or her) for everything. And always go with your gut.

 

And :grouphug:, I'm sorry for your loss.

[Nestof3]

I have a friend who is my age. When he was about 30, he suffered a massive stroke while cycling which left him in a coma. He has juvenile diabetes, and was having regular blood tests. The tests were sent to his PCP with a warning on it because his platelet count was sky high. The PCP did nothing about it. He had a blockage in his main artery to the brain. He is now taking a medication which regulates his platelet count. That's all he needed then.

 

He was a few weeks shy of getting his masters in engineering. He is now legally blind and teaching advanced mathematics at an all boys' school in California. He did finish getting his masters, but he can never be what he had hoped to be.

 

He has always been such a healthy person, managing his diabetes by being selective about what he eats and exercising daily. He just finished competing in a 10km swim across the Horsetooth reservoir in Colorado. When I saw him this past winter, he couldn't even recognize me.

 

****************************

 

And, then there's our friend on the WTM forum with breast cancer which went undiagnosed.

[ScoutTN]

My Dad was diagnosed with lung cancer after six months of coughing. He was told he had bronchitis and put on antibiotics. He had a huge tumor and they missed it completely. Even with a chest x-ray! He died 5 months after the cancer diagnosis.

 

He didn't get to give me away in our wedding. Never met my DH or his grandchildren.

How I miss him!

 

Between this and the arrogant RE who told me I'd never have children apart from IVF and then only a 1-2% chance, I certainly mistrust much of our medical system!

Edited September 13, 2010 by ScoutTN

[Pam Wilhelm]

These numbers are not absolutes. There is no definitive study — which is part of the problem — but all of the available research indicates that the death toll from preventable medical injuries approaches 200,000 per year in the United States.

 

...from this (one of many, many articles) article....

 

http://www.chron.com/disp/story.mpl/deadbymistake/6555095.html

[cjbeach]

I attribute a lot of it to "too many hands in the cookie jar" when so many specialists are involved..there's not coordination of care if the patient is eldery or does not have a strong advocate. The flip side is a doc who won't refer out. Either situation isn't good,IMO.

I'm a nurse and my mom was a sick,sick lady. I saw so many mistakes. The night she first stroked the paramedic and I both "called" it as a stroke but the ER doc said it was only pulmonary edema meanwhile she had all types of eye activity that was ringing major NEURO-related bells in my head!!!! When her scans were finally looked at almost 12 hours lady she had a large bleed in her left hemisphere. I was ticked. Way ticked. Then she went into the ER for a seizure, seized in the ER, the ER doc saw a few seconds of flatline and called a code... long story short the CRNA who intubated her kept shoving when she should not have shoved (should've attempted another route since she was back in sinus rhythm) but she shoved too hard and too long and nicked my mom's vocal cords. She never recovered...she wound up with a tracheostomy. And then when she had the trach placed 5 days later when you walked into the room the stench hit you in the face (hello, pseudomonas). I bugged the crap out of the primary doc about changing the stupid tube. Like come on people! On the 5th day I walked out and was "Look, give me a freaking trach tray and I'LL change the darn thing!" FInally the called the ENT resident and he walked in, walked out, grabbed a biohazard bag for the bedside and changed the green, foul, nauseating trach. He slipped in front of me (?) and said "That was an utter disgrace." Duh. Do you think? He had a clue enough to culture it and it was + for everything. It was that gross.

 

And that was just my mom. Things were so bad with a few of my dad's hospitalizations (with 3 in the family as nurses) that I actually got to the point where I was on the phone with Utilization Management of the hospital every morning for status updates because I was sooo certain my father would have a huge suit against the hospital. We didn't pursue it though.

 

So yeah.. mistakes happen and they happen often. You can only be an advocate, keep your medical records if there's multiple specialties involved, ask questions and if it's an inpatient setting ..don't think twice about getting a patient advocate involved. I actually want to pursue my education IN patient advocacy, just from what I went through with my parents' care.

 

Many hugs.

Edited September 14, 2010 by cjbeach

[littlebug42]

In a little defense of radiology and the radiologists, even our advanced technology has its limitations. MRI/MRA can only detect aneurysms reliably once they hit a certain size, so even with an MRI, the aneurysm may have been missed. Also, on chest films, it can be very difficult to determine if a mass is a true mass or pneumonia. If the film was misread, the primary doctor may not know that there was a mass and be operating off of that suspicion. Sometimes, multiple scans including Nuclear Medicine scans have to be done to find cancer. I work with some very diligent radiologists and the job they have is very difficult.

[Oops, duplicate account :/]

I am so emotional reading these posts. :grouphug:

Edited September 13, 2010 by mommyjen

[Mejane]

.

Edited September 18, 2010 by Mejane
tmpi

[Cindy in the NH Woods]

 

Recently, doctors missed ds's Lynme disease. The poor kids suffered for a year before they finally (after I blew a fit and MADE THEM do a lyme titer...Western Blot test.) It came back extremely positive. He did the anti-biotic course, but there was nuerological damage (I don't know HOW permanent yet) and physical damage (permanent????) He also lost 4 months of school, training and ended up depressed.....OY!!!!

 

This was all just awful.

 

Faithe

 

Very similar story here~ so sorry about your experiences. :grouphug:

[Carrie12345]

 

I don't understand how doctors could screw up SO badly. :confused: I haven't trusted doctors since my mother's death (15 yrs ago).

 

Has this happened to your family? How do you plan to protect your family in the future from this happening? My plan is to ALWAYS get a second or third opinion!

 

WHY DO PEOPLE TRUST THEIR DOCTOR WITH THEIR LIFE?? :crying:

 

:bigear:

 

Not with cancer, but a doctor's opinion almost killed me.

 

I had an ectopic pregnancy almost 2 years ago. I was the perfect candidate for methotrexate (I double checked for myself!), so I took that over surgery.

 

Nearly a week later, I passed out at my in-laws' and was taken by ambulance to a different hospital and seen by a different gynecologist. She stood there while the u/s was being done, mentioned an excess of fluid, kept me overnight for observation, then sent me home without a follow up u/s.

 

Got home, nearly passed out again, went to my regular hospital, and had emergency surgery to remove the tube and empty a liter of blood out of my abdomen. I almost didn't even go in b/c I hadn't *actually* passed out, and didn't want a repeat of the night before.

 

I had already thought that I had a healthy skepticism when it came to doctors, but it didn't get me anywhere! Now I just do my best when it comes to internet and book research, and then cross my fingers when it comes to emergencies. :001_huh:

[kalanamak]

I

 

WHY DO PEOPLE TRUST THEIR DOCTOR WITH THEIR LIFE?? :crying:

 

:bigear:

 

Who else to trust?

 

(What kind of bone cancer. Some are devilishly hard to diagnose at first but cause pain quite awhile before hand...namely multiple myeloma.)

 

Getting three opinions is a good way to have unneeded tests. I know a man who was sure he had colon cancer (because "he'd been down on himself and he knew he was giving himself cancer"...his words). He paid for 4 colonoscopies and begged for some biopsies. One showed cancer. He had 4 feet removed. They couldn't find any cancer in that 4 feet, so they went in the next day and took out 2 feet on each end...a total of 8 feet out. No cancer. It turns out the slide was mislabeled and it was ANother patient who had the Ca. However, it is unlikely he'll get colon cancer (not much left in there) and he is never constipated. By having 3 unneeded colonoscopies, he just exposed himself to more error.

 

I also know of a man who was mentally incompetent. His family wanted "everything" for him. He'd been treated for thyroid cancer years before, and family wanted a more aggressive doctor. New doctor stopped all thyroid meds to do a scan. Patient had no lump and recurrence would have been very hard to treat, as the man was much further down the road, mentally. Being off his thyroid meds caused slow heart rate and congestive heart failure and a scary hospitalization. Okay, the doctor who ordered the scan "did it by the book" and the doctor who didn't (who is remaining nameless) was doing by "the art of medicine". Patient never got the scan because he nearly died of the prep. Who was right? That doc or the concerned family who wanted "everything"? Medicine is not exact, and it is an art, and it will never be perfect.

 

I could go on for pages for the situations where "more" turned out to be worse than less.

 

It has been said an MD who is his own MD has a fool for a doctor. I chose my doc well, and then close my eyes. And yes, there are "complete idiots" out there. Put them out of business.

[Tree House Academy]

Wow...these are tough stories for me to hear. Sadly, they ring true again and again. My grandfather went into the hospital with pancretitis and died 8 months later from the staph infection the hospital gave him. My grandmother had pneumonia and when she would stand in the hospital, her bp would shoot up. THe nurse noticed this and called a dr to check. He never showed up, the shifts changed, and the night shift nurse was apparently not made aware of the bp issue. My grandma asked to go to the bathroom. The nurse UNHOOKED her bp cuff and sent her in to do her business. My grandmother died of a massive blood clot that had cut loose and reached her heart killing her instantly.

 

People ask why I am a hypochondriac...why I don't trust doctors...why I can never believe that I am "okay" just because I have had some test or whatever. Well, this is why. This whole thread is why. And it sucks when you are a hypochondriac and your "know my body" gut instinct is usually WRONG about what ails you. It propells you into thinking you are dying from a hangnail and you somehow have to grip yourself and try to figure out what is your gut and what is your hypochondriasis. It sucks.

[lionfamily1999]

I just found out that my sil - mil had lung cancer after the doctor told them for SIX months that it was bronchitis! She died last week (very soon after lung cancer was found).

 

My mother was diagnosed with severe degenerative disc disease by her oncologist (3 yrs after her breast cancer) and it was BONE cancer (I took her from NJ to MA to find this out). She died 1.5 years after the diagnosis of bone cancer. She suffered terribly before & after the diagnosis of bone cancer (never mind the breast cancer yrs before).

 

I don't understand how doctors could screw up SO badly. :confused: I haven't trusted doctors since my mother's death (15 yrs ago).

 

Has this happened to your family? How do you plan to protect your family in the future from this happening? My plan is to ALWAYS get a second or third opinion!

 

WHY DO PEOPLE TRUST THEIR DOCTOR WITH THEIR LIFE?? :crying:

 

:bigear:

My mom had a lump in her breast that was identified during a mammogram and called suspicious. That happened in... August of 2007 (I'm terrible with dates). The doctors planned the biopsy for December... hmm, biopsy of possible breast cancer scheduled four months later. The doctor said that cancer is slow moving, so no worries. Oh, then they over scheduled and left my mom unconcious laying on a gurney for most of the afternoon before they figured out they didn't have enough time to do the biopsy that day, oops! But no worries, because cancer is known for moving like a snail, right. They rescheduled for February.

 

Now, Mom had had two very small areas and they were opting to just remove the spots, rather than biopsy them. By February, you'll never believe this, those spots had spread to encompass both breasts, some of the glands or nodes under one arm and all of them under the other. So, the lumpectimy became a bilateral misectomy. note, if you wish to correct my spelling, feel free. Copy/paste the words into an email along with corrections and send them to yourself, you'll feel better and I won't end up screaming.

 

Mom recovered :hurray:

 

Mom then tore a muscle in her back... or so they thought. Now, six months (or is it eight?) since she started having those problems they have figured out that it wasn't a pulled muscle, it's cancer. Cancer that's been there long enough to have spread to a rib.

 

 

 

 

I do not trust doctors. I used to, but not any more. They owe too much money and need my money too much for me to put much stock in them. I see them on equal footing as any repair person, with the exception that I can't expect to get much redress when they screw up.

[OnTheBrink]

Had I listened to my (former) primary care physician, I'd be dead today. I had a mole that had gone from a regular old brown mole to one that was raised 1/2 an inch, pink, tender, and bled easily. I asked him to look at it and he gave it a glance, said it wasn't cancerous and was about to walk out. I INSISTED on being referred to a dermatologist. He argued that it wasn't anything to worry about. I said I wanted a referral NOW. He got me one, but it took a month to see the derm. When she saw the mole, she said that it didn't look cancerous BUT because it had changed so drastically was was bleeding, she wanted to biopsy it. Sure enough, it was malignant melanoma. When she called me to tell me to come in for the path report, she'd already scheduled me to see a surgeon and oncologist. She gave me the appointment cards right then. I told her what my PCP had said and she said she would contact him immediately and let him know, even though I told her I'd never go back to him again.

 

Thankfully, it was caught in time. The tumor under the mole was 5 mm thick, which is apparently very large. I had a sentinal node biopsy and thankfully, the cells had not spread. PET scan showed no additional cancer anywhere. It's been 6 years.

 

Recently, I got insurance again and have seen a new internist, (the doctor I went to after the horrid one has left the state--I loved her!) my old dermatologist and a new gyn. All three communicate with each other. In fact, I saw the gyn last week and one of the last things she told me was, "I'll be sending Dr. Primary Care a note, going over what we discussed today." I LOVE that. I also love that all three of these doctors are part of the same clinic organization and when one pulls me up on the computer, all my previous visits with other doctors are recorded, as well as my medications, vital stats, etc. So, they all know the medical info on me. That makes me feel more confident that nothing is being missed and that I'm not having redundant tests done. When my derm wanted bloodwork on me, her nurse told her of all the tests I'd recently had, they pulled them up and looked them over and determined that the only additional testing needed was a liver enzyme and chest xray. That kind of communication keeps costs down, too.

 

Despite the one bad doctor, I've been pleased with the doctors I have now. I still plan to read up on things myself, but I feel confident that they at least have all the info on me that's up-to-date and nothing is falling through the cracks.

[LizzyBee]

My cousin has cancer in her bones, liver, and lungs. She found this out after being treated for a year for arthritis. This is a recurrence of her breast cancer. With her history, I don't understand why it took them so long to figure it out. I mean seriously, is it normal to lose 6" of height with arthritis?!

 

My uncle had some blood tests. Nobody called or faxed any results to the family or doctor, so we assumed the results were normal. My sister (a nurse) went by her office and decided to log onto the hospital computer to make sure his results were normal. They weren't - he had blood clots. She called his doctor, who told her to take him straight to the ER. While he was in the hospital, he was on blood thinner meds, but his results were getting any better. The doctor wrote an order to up the dosage. My sister decided to log on and check his chart before she faxed the scrip to the hospital. She found out the reason his blood wasn't thinning was because no-one gave him his meds even though his scrips were clearly noted in the chart. There have been other things too. I'm pretty sure my uncle would have died by now if not for my sister.

 

In 1999, my sister's sil was pregnant with her first baby. She was full-term after a great pregnancy. She had a horrible headache and finally called the doctor at 3 am. The call back was from a nurse rather than the doctor, and she was told to take tylenol. A few hours later, June died in an ambulance from pre-eclampsia, but her baby survived and was absolutely beautiful. Her death would most likely have been prevented if she had been sent to the hospital or even Walmart for a BP check. A pregnant woman has classic symptoms of pre-eclampsia and is told to take tylenol and go back to bed - that still makes me so angry!

Edited September 18, 2010 by LizzyBee

[EJCMom]

Six years ago last week, my mother was feeling tired and was losing weight. She went to her primary care doc and was told that she had a non-specific liver infection and was anemic. He told her to eat meat and prescribed some antibiotics. About a month later, she was having trouble breathing so we went to the ER. They were very concerned and admitted her into the hospital for more tests. It turned out she actually had breast cancer that had metastasized to her liver, lungs, and into her bones. She passed away two weeks after her diagnosis. For the life of me I will never understand how her doctor missed the cancer. It was doing everything but waving a neon sign.

[lamamaloca]

It is a sad thing that doctors could miss these serious diseases, but without doctors and the knowledge and tools of modern medicine there wouldn't be anything that could be done for these things, whether they were caught or not.

Edited September 14, 2010 by lamamaloca
I can spell, truly!

[jazzyfizzle]

Tragic stories.

 

 

 

Reflux and 'overdoing it' (during pregnancy) here was actually- pancreatitis, gall bladder disease and then DKA diabetic coma. Oh, add in a couple small strokes for good measure during all that.

Yeah doc, that prevacid did wonders for me -living through h*ll.

 

 

DH's sister diagnosed with RA died shortly after with actually- Lupus.

[FeFe]

My son's neurosurgeon told me (after performing spinal surgery on my 6 mos on something that my pediatrician completely missed) "They call it the PRACTICE of Medicine for a reason." That's stuck with me.

[RoughCollie]

Two months after I had heart surgery, I went to the ER 3 times because I was having cardiac symptoms. My doctor was out of town.

 

The third time, the hospital admitted me. I took a treadmill test. I passed the cardiac workup with flying colors. The cardiologist came into my room and had a long talk with me. It boiled down to this: Homeschooling was making me anxious. I wasn't homeschooling; I was recovering from a double bypass.

 

So I went to Boston to see another doctor in the practice because I was having severe cardiac symptoms. I brought the test results from the ER where I lived.

 

The docs in the ER had read the first EKG incorrectly -- it clearly showed there was a problem. The Boston doctor called an ambulance to move me 2 blocks to the hospital ER.

 

That ER wasn't any better. After languishing for 12 hours, I told the nurse to take the IV out or I would remove it myself because I was leaving the Harvard hospital to go to the UMass hospital in another city, so I could get treatment.

 

Lickety-split a cardiologist showed up at my bedside. An hour later, I was given a heart cath because I demanded it -- and thanks to 2 stents and an angioplasty, I am alive to tell this tale.

***

OTOH, my own doctor saved my life when he discovered during a routine physical that 2 of my arteries were over 90% blocked. The biggest mystery was why I was still alive, especially because my left main artery was 97% blocked.

Edited September 14, 2010 by RoughCollie

[LaissezFaire]

My DD was misdiagnosed for YEARS. Early on in her life (age 2?) we noticed she had issues consistent with some kind of blood sugar problem. When she was 7 she just seemed to go downhill and I kept at the Dr's insisting there was something really wrong and I felt like she might have diabetes. Dr. kept brushing me off insisting she was just small and constitutionally delayed (at 8 years old she was 39 lbs!). Finally I demanded to be heard, I wrote a long letter detailing everything ending with, "This child is DYING and we have watched her 'light' go out in front of our eyes." I guess this finally lit a fire under the dr who agreed to do a SIMPLE FINGER POKE which immediately revealed she was diabetic.

 

The hubris of most Dr's astounds me. I truly get the sense that many of them want to be the one to find out the problem and will not let a parent steal their thunder, even at the expense of a child's health.

 

Later we learned that she had likely been hypoglycemic for a period of time before it killed her pancreas and she ended up diabetic. We always listen to our own gut now and I am probably not a favorite patient with Dr's.

[Anne in CA]

This subject really hits home. One of my dear friends died of misdiagnosed liver cancer last year. She was told that her pain came from arthritus and she was dismissied when she kept going back to her doctor and asking for tests. By the time the doctor took xrays it was too late. Liver cancer is much more treatable now than is used to be and she could have had a chance if she had been correctly diagnosed before it went so far.

 

My MIL was also told that she had fiber mialge (sp?) for 18 years. She was told this by three different doctors and it turned out that she had a genetic circulatory disorder that is totally treatable. She didn't work for many years because doctors told her she shouldn't , and she could have had a normal life.

 

So, I don't trust doctors at all. They are a necessary means to an end when you need a vacination or a prescription, that's all.

[Murphy101]

My mother was told she had fibermaliga for 18 months. Even when she had golf ball sized knots on her neck.

 

Um. No. It turned out she had lymphoma pretty much every freaking where.

 

She died within 6 months of finally getting a diagnoses.

 

But she didn't die of cancer. Her dr kept his promise on that one.:glare: he looked us in the face and said he had not lost a patient to it. After radiation and chemotherapy, she died of viral infection due to lack of any immune system.

 

And don't even get me started on diabetes. I will never forget the year of he'll my dh had because we didn't have insurance and the donkeys at the er just kept telling I'm to check his sugar more despite our protests that he was and it wasn't making a difference and that there was something else wrong. We get insurance with a new job and get into his endo pronto. Within 10 minutes endo. says the problem is that dh has become intolerant to his insulin and needs to switch to a different derivative. It's amazing that year didn't kill him or have a much longer affect.

 

I think the problem is drs get on autopilot. They don't listen to patients or they don't believe them. They see the statistics and that basically determines their entire practice. Everything that doesn't fit the majority profile is up creek.