From Jim Gilliam's blog archives
"the horror of the lung biopsy"
February 10, 2006 2:04 PM
Jerry in Texas sent this into a pulmonary fibrosis message group:
Now lets talk about doctors that think it is necessary to cut several holes in a distressed lung . I think that it is the fact that many doctors are not trained to recognize PF and have to rely on a pathologist to tell them after a surgeon is paid to cut a bunch of unnecessary holes in your lungs.
I will ask the question one more time. How is a doctor going to treat you differently with a biopsy as opposed to treating you without a hole in your lung.
My gosh folks read all the post that this board has had about the horror of the lung biopsy. And no one says that the doctor changed treatment to some new unheard of miracle cure because they cut a hole in your lung and tore out a piece.
As Mary said there are other options to confirm that you have PF. If your doctor can't come up with a damn good reason why I would be finding me a new doctor. I can find you 10 folks for every one that had major problems with a lung biopsy and would NEVER let them do it again.
If your doctor can't tell by listening, looking at your x-ray, looking at your ct scan and doing a bronchoscope then the question must be why do you need to cut a hole in my lung and how will you treat me differently.
Before my lung biopsy last September, only those close to me really knew I had a problem. I was able to live a normal life. After putting the holes in my lung, I can't do much of anything physical, I'm on oxygen, and things pretty much suck.
In making the decision to do the lung biopsy, I had no concept that I could be left in a significantly worse shape after it. My thought process was ...something's wrong, this is the only way they can figure it out. No matter what, I'm gonna have to do this.
I knew there were risks with the surgery, but they were described "as with any surgery, there are risks". Plus, I had a biopsy on my lymph nodes back when they were diagnosing my lymphoma. That wasn't a big deal, they were just taking out lymph nodes which needed to be taken out anyway cause of the cancer. And I've had a half dozen bone marrow biopsies. So the word "biopsy" just wasn't scary to me.
Dammit. I just wish someone had said.. "Jim, we're gonna put at least one hole in your lung. This could make your breathing substantially worse. We feel we need to do this to see if there is any possibility of treating your problem. My best guess is the likelihood of finding something treatable is X%"
Instead what they say is "We're gonna remove a small piece of lung tissue."
I'm a smart guy and I never equated "small piece of lung tissue" to "hole in an already messed up lung."
"the horror of the lung biopsy"
Next Entry: The Caffeine Nap (02.11.2006)
Previous Entry: Fixing problems...sometimes it's not so hard. (02.08.2006)
Read the 17 comments.
oh jim, i'm so sorry. words are so inadequate. please know i haven't stopped praying.
Fri Feb 10 2006 3:50 PM
Total and absolute frustration reading this. I mean, what can ya do? I can't think of a better word than frustrating.
Have you started to read The Patient from Hell yet? ;-).
Fri Feb 10 2006 5:33 PM
I'm so sorry Jim..it's really hard thinking of the things that have gone wrong...and everything you are unable to do right now..I wish there was something I could do.
Fri Feb 10 2006 7:07 PM
thanks... yes, j. i'm reading patient from hell right now. it's rough though.. i think of all the things i could have done differently over the years.
my whole life i've never had regrets about anything. but i'm starting to now about how i've handled my health crises...
it's really hard though. the more you obsess about doing the right treatments, the more depressing it can all be. and it's exhausting. i just wish you could trust the damn doctors. but the sad truth is you can't, and it's not like they are bad people or even incompetent or anything. it's a macho ego-driven profession that celebrates being overworked...the doctor with no life is an american archetype and it's all exacerbated by government policy and the corrupt health care industry.
there are a handful of really great doctors and a whole ton of mediocre ones. it's a bell curve, and it's a fact we all have to deal with -- in the end people don't get the absolute best treatment they possibly could. it's up to the patient to figure it out.
Fri Feb 10 2006 7:58 PM
I'm certainly sorry to hear about all this Jim.
For what it's worth, depending on the kind of jurisdiction, this smells like the medical negligence doctrine known as "informed consent". In other words, you were not informed of a "material risk" involved in a procedure that you had time (non-emergency, you were of sound mind to decide) to consider and consent to or refuse...had you been fully informed to all reasonable potential risks, you may have decided not to consent to the procedure.
You were not told of a material risk. In many jurisdictions, it is also known as medical malpractice and it is illegal.
Not sure if you'd be up to it, either in spirit or in strength, but you might want to chat with an attorney about this Jim. It's what the law is there for and it can prevent what's happening to you from happening to someone else.
For chrissakes, if this happens to most all of those patients who get a biopsy on a lung, it damn well should be custom to fully disclose how miserable the patient will be post-biopsy.
Feel as good as you can, eh?
Fri Feb 10 2006 9:55 PM
This is a very good point.
Thu Mar 2 2006 12:00 AM
Sorry, I should be more clear. What I meant to say is that it's a very good point about these lung biopsies apparently causing considerable damage. I think they should have some non-invasive way of diagnosing PF. This is really disturbing and highlights the still primitive state of medicine.
Thu Mar 2 2006 12:36 AM
I was wondering if you could explain to me what might happen to my Grandma. She is 80 years old and is having a lung biopsy done on friday. She said the doctor scared her and she wasn't sure if she was going to make it out of the procedure. She has had so many tests done in the last three months and they said they need to cut a piece of her lung to see how they can help her. My question is....Should I be worried? What should I be worried about.
Tue Sep 26 2006 7:36 PM
after reading your problems about the lung biopsy I doubt that I will be having it done,Maybe the other doctor will find a better way or something different.Im sorry no one told you but I am glad that I read your story before hand.Thank You !!!!!!!
Fri Nov 17 2006 9:04 PM
it is so unfortunate to read this information after my father has already died from this procedure. why didn't i read these things sooner? why couldn't i have told him not to do it? my family says it was inevitable, but a 43 year old man should not have died from a disease that he was diagnosed with only weeks after his biopsy. do not go through what i had to. encourage your loved ones not to go through this procedure.
Sat Dec 2 2006 2:13 PM
My daughter Sarah is 12 Years old. She is trached.She was diagnose with Recurrent Respiratory Papilliomatosis at the age of 11 months. Shae has undergone well over 300 Laser bronscopy surgery. The virus is now pretty much in her lungs. She's on oxygen along with having breathing treatment every 4 hours. She has alot of lesions or you can say nodules in her lungs some have cavitated, which have left holes in her lungs. My concern now is that her oncologist would like for her to have a lung biopsy. He's concerned one of the many lesions has grown in size and contains fluid. Sarah has been dealing with pneumonia alot lately. It just seems like things are not looking up for her. My concern is that if a lung biopsy is done that she woould not make it. I'm very scared for her, she is my life!!!
Tue Jan 9 2007 2:16 AM
I wish I had read your article sooner. My brother in law had the lung biopsy and now has a hole in his lung. He is on 100% oxygen now and similar to you is in worst shape.
Thu Mar 8 2007 8:43 PM
My dad is 82 years old with COPD and sever emphysema, diagnosed in March 2007. he too, was told he needs a lung biopsy to find out what's going on in his lungs, so they know how to treat him, but if he has this procedure he will not survive. WHY even tell him he needs this, only not to make it through the procedure, so their telling him he will die if he has the biopsy. I don't get doctors today, I don't think they even care about their patients. He's been in the hospital 2 times since march, because of his breathing and fluid building up in his lungs and around his heart. And he went back to the hospital yesterday, will see what they do now. There has to be other ways to find out whats going on in his lungs and treat it.
Sun Apr 22 2007 9:20 AM
i had a needle biospy following a chest xray, ct scan, & pet scan at the vets hosp in salem, va & they partially collapsed my lung & they discharged me from the hosp following the procedure (they didn`t know they collapsed my lung)& i kept coughing up large amounts of blood & extremely short of breath - then i had to return to the emergency room where they put a tube in my chest to let out the air they let in while doing the biospy. why did they not know after chest xray, ct scan, & pet scan that i had lung cancer without the biopsy??? i`m now afraid of this hosp & drs` which is a "learning facility" whose drs` are students from uva getting their practice.
Sun May 27 2007 6:52 AM
I went to the pulmonologist and he said i have borderline low oxygen levels. After a six minute walk it was 89%, at rest it is 97%. I have mild sleep apnea. This was discovere by accident after a routine blood test,I feel fine but he wants to do a lung biopsy to find out what is going on? Should I let him? The cardiologist who did the echo (which is normal feels they are chasing a diagnosis) Whast do you think?
Mon Jul 9 2007 3:53 PM
My husband is being treated at the VA hospital. He is doing great, no obvious problems. He had a CT Scan done of the chest and that saw a lymph node and the doctor want to do a bronscopy . The concerns we have is , My husband is doing fine, no breathing problems, he is living a normal life. He had a kidney removed a April 2006 because of RCC. He was told that got all of the RCC and 6 months later there was no evidence of the RCC recurrence. Even with that, I have lots of Faith and is very concerned about the medical profession making him worse, can someone comment of this. We are very concerned about them puncturing his lung. We are believing for this healing.
Wed Aug 29 2007 9:30 PM
My doctor told me that, he could monitor my lungs with ct scans or he could do a biopsy, I asked him if there would have any risk, he said, yes my lung could collapse. I did not like that answer, I thought to myself why would I want to take that risk, when I feel fine, I can breath and don't have any problems, yet I kept thinking maybe I should, afterall I could develope a big problem,
Jim, you shared your very painful dreadful experience with many of us who don't know any better. Now, I will not decide to have it done.
I will keep you in my prayers, thank you for sharing your experience. We tend to think, it can't happen to me..
Sun Oct 7 2007 9:14 PM