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An Update on Patrick Volkerding

Noryungi writes "Patrick Volkerding, the maintainer of Slackware Linux has posted an update on his health problems on the ChangeLog of Slackware-Current. Unfortunately, it seems his health is getting worse and not better... Again, if you know some specialist in viral infections, contact Patrick ASAP. Hang in there, Pat!" Our original story.

15 of 518 comments (clear)

  1. Best of luck by Anonymous Coward · · Score: 5, Insightful

    I, like most of slashdot, send my well-wishes.

    1. Re:Best of luck by BoldAC · · Score: 5, Insightful

      Okay, I send my best wishes... but I am worried.

      I'm a doctor at a teaching hospital so we see wierd stuff all the time. I'll give you my sideline quarterbacking of the situation.

      First, you have a patient who is trying to diagnosis and treat his own condition. A good analogy would be a newbie blindly editing his/her registry. I know its the "hacker" way, but hacking your own body can be dangerous. It's difficult to reboot or reformat the body as a system.

      Second, you can't have pulmonary "pops." If you pop a bleb, you develop a pneumothorax... and you are sick as poo. This can be seen on a chest X-ray and typically would need a chest tube to prevent respiratory failure.

      He talks about going to Mayo... and multiple ERs. Doctor-shopping raises multiple red-flags.

      His sedimentation rate (ESR) is normal. It is very, very difficult to have an infection or inflammatory process with a normal sed rate.

      Obviously, I have not examined this guy. He might have a new disease that completely goes against science as we know it. But people come to us for rare medical problems all the time... we love it. When we find something rare, we jump around giving each other high-5s. We spend tons of research and government money trying to figure out these rare case. However...

      I'm just not buying in this case.

    2. Re:Best of luck by vortimax · · Score: 5, Insightful

      >First, you have a patient who is trying to
      >diagnosis and treat his own condition.

      This is usually the only way to get something fixed these days. Most doctors are very resistant to doing anything that could be called diagnosis. Their answer to everything is usually to ask you a few questions, interrupt you after hearing the first sympton they can connect with some common malady, and then decree what's wrong with you. As in Patrick's case, it's common for the doctors to ignore facts which don't fit (after all, how could stupid patients possibly know anything about all that hard "doctor stuff").

      Most doctors seems to diagnose everything I get as "something that's going around" and prescribe antibiotics. I usually have to do their research for them and then come back for another visit, demanding the specific tests needed to diagnose the problem (which sometimes requires moving to a more cooperative doctor), and then insist on proper treatment based on the test results.

      Fortunately, many medical texts are available online which contain the information needed to self-diagnose. But you still need a competent doctor to perform or authorize tests and prescribe treatments.

      Over the years I've found it very rare to meet doctors who actually take an interest in diagnosing an illness by using specific tests to determine the cause instead of just prescribing antibiotics. They are out there, however, and worth looking for. Just don't expect to find one easily. Most doctors seem to be lazy, disinterested, or simply not capable of diagnosing patients. Sturgeon's rule (90% of everything is crap) applies to the field of medicine as much as any other field.

      When I find a doctor that resists doing tests that could result in a diagnosis, in favor of randomly prescribing common drugs, and who argues against "doctor shopping" when a doctor is obviously wrong, it raises major red flags for me as a patient and is a good indication that a better doctor is needed ASAP. I hope Patrick can find some competent doctors in time. They're rare.

    3. Re:Best of luck by qcomp · · Score: 4, Insightful
      First, you have a patient who is trying to diagnosis and treat his own condition. A good analogy would be a newbie blindly editing his/her registry. I know its the "hacker" way, but hacking your own body can be dangerous. It's difficult to reboot or reformat the body as a system.

      I think that's a bad analogy: if he was treating himself, it might be like editing the registry. But recording symptoms and diagnosing himself is more like reading (and trying to understand) error messages. That's what even a newbie could and should do. -- Especially if his hacker friend is too busy to listen to his problems...

      My best best wishes to Patrick. I hope he gets well soon.
    4. Re:Best of luck by BoldAC · · Score: 4, Insightful

      Pat doesn't need _another_ doctor. He has had multiple physicians already see him, order labs, radiographis and do H&Ps. He says he visited Mayo. He says he has seen an internal medicine (and maybe an infectious disease) physician. He needs to figure out which of those physicians he trusts... and stick with one.

      If I were to see him and if I were to decide that he didn't have some horrible medical illness... would he believe me?

      I would likely be included as one of those damn, nonbelieving doctors in his next posted update. Neither he nor I would gain anything from that.

    5. Re:Best of luck by coaxial · · Score: 4, Insightful

      Fortunately, many medical texts are available online which contain the information needed to self-diagnose.

      When I read this I was reminded of what my abnormal psych professor said at the start of class. "Don't start reading ahead. Don't just open the DSM-IV and start reading about wierd psychological problems. You're all perfectly normal and sane. When we study obsessive compulsive disorders, all of you are going to start thinking, 'I have these symptoms. I have OCD!'. You don't. When we start start reading about schizophrenia and people talking to themselves, and hearing voices, you're going to think, 'Wow! I talk to myself all the time. I'm schizo!'. You're not. None of you have the training or experience to diagnose anything. Don't act like you do."

      Everytime you change doctors, you're starting the diagnosis over at step one. When you come in and say "I have disease X. Give me xyzzy, that new perscription drug I've seen on tv." The doctor thinks, "hypochondriac".

      The reason he initially thinks it's "the thing going around", is because 90% of the time it is. Only when that treatment fails, will the doctor move off that. Instead of actually going back to the doctor in two weeks like he suggested, you go to another doctor who says, "Hypochondriac. Take the antibiotic and come back in two weeks if it's not working." Instead of moving to step 2, you've decided to shop around until you find someone who is willing to start at step 6. No wonder it's hard for you to find a doctor.

  2. Humour by balster+neb · · Score: 4, Insightful

    "Netcraft does not yet confirm it"

    Great to see he's kept his sense of humour.

  3. Good luck Pat by Gothmolly · · Score: 5, Insightful

    Pat is one of the heros of the Linux movement, like Donald Becker, or Andre Hedrick, people without whom running linux would be an impossible task. Pat, good luck, hang in there!

    --
    I want to delete my account but Slashdot doesn't allow it.
  4. Bacterial, not viral by wa1hco · · Score: 4, Insightful

    He thinks normal mouth baterial got into his lungs.
    Which can happen.
    Med Labs routinely ignore mouth bateria in samples.
    Antibiotics tailored to leave them alone.
    Antibiotics don't work on virii, at all.
    Needs old fashioned or special antibiotics.
    Some heart disease caused by infection.
    Still learning how much disease caused by infection.
    Doctors don't do unusual very well.
    Needs to get lucky with right doctor.
    Nothing wrong with defending yourself.

  5. RTFM by DarthBobo · · Score: 5, Insightful

    This fucking ridiculous.

    If he is as sick as he says, _any_ physician would insist on having him hospitalized and having multiple consultants see him (notably, infectious disease and oncology.) He symptoms suggest a progressive disease that requires agressive intervention - and that doesn't mean trials of expensive antibiotics.

    He has either failed to see a primary care physician, or he has refused appropriate treatment and admission to a hospital. In either case, as an educated, intelligent man he has made his own decision. Slashdot should not be contributing to his decline by enabling his poor decisions. He needs to be told flat out by his friends that they are not going to work with him until he agrees to admission and workup at a major teaching hospital (which, by the way, will have access to every antibiotic in the world.)

    --
    +--------------------- You idiot! I told you we were facing the wrong way!
  6. The problem with doctors... by siskbc · · Score: 5, Insightful
    ...is that he self-medicated for a long time. If he had gone to a doctor right from the start, he'd be probably fine by now. Seriously.

    No, the problem is that he went to a doctor at the start, who told him nothing was wrong. He repeated that about 10 times. In the meantime, he tried to find out what was wrong with him because 1) he has more time than the GPs and crappy specialists he saw, 2) he cares more than them about his health, and 3) most doctors don't think creatively because they aren't trained to.

    As someone who has had a hard-to-diagnose health problem, Patrick's course of action is the only one that works. You have to do your own research, and pester the hell out of doctors to get them to actually try to diagnose you. Otherwise, they either tell you nothing's wrong, or they refer you to someone else who repeats the whole process and refers you again.

    Patrick didn't self medicate. He's just trying to get these damned doctors to take his condition seriously.

    --

    -Looking for a job as a materials chemist or multivariat

  7. Pretend they are technical support... by stienman · · Score: 4, Insightful

    My experience has been that with any profession if you, not part of that profession, claim to know better or push them to do what you believe needs to be done, they will be infinitely less useful than they would be otherwise.

    Think about computer technical support, as an example we are all familiar with. They are paid to solve your problem according to their standards as quickly as possible, then get the the next call.

    Physicians are not different, due to hospital and insurance policy.

    If you act belligerent, and insist that you know what's wrong and that they are to follow your orders, they will likely turn a deaf ear to your complaints, do the minimum necessary that won't get them in trouble, and hope that you bug some other physician next time.

    Further, like a tech, if they hear that you are searching for the right doctor to diagnose you according to your desires, they will all the more easily dismiss your problem. Firstly because you may well be a hypochondriac, secondly because they know you won't stop until you're treated, and thus they don't need to be burdened with the thought that you might take their advice and then die.

    The best way I've found to deal with people who essentially must operate according to a 'script' or 'SOP' is to approach them with my most major complaints/symptoms, avoid using any terminology that might show I know more than I'm letting on, and let them go through their normal procedures.

    Doctors (and techs) are getting more used to the idea of self-help, so it can help sometimes to say something like, "I looked my symptoms up online and [reliable medical website] suggested something called 'technical term'. Is there a way to prove that I don't have that?"

    The reason physicians and techs are so jaded is because in the vast majority of cases, the doctor hopping, belligerent, advice ignoring patient/client is wrong. Further, if they aren't willing to go through your normal procedure for knocking off the most obvious problems, there's no way in this world that they'll diagnose you for something that is rare.

    The fact that your are doctor hopping and hospital hurts you more than it helps. At the minimum you need to get a copy of your medical record from every provider you've visited and then choose a doctor/health system and stick with them. Changing doctors is resetting your medical care. A new doctor has to start from scratch.

    Lastly, make sure the 'trouble ticket' isn't closed until you are satisfied. If the doctor gives you a clean bill of health, then ask them why you still have these symptoms. If they won't give you a clear answer, then ask to be bumped up to the second tier of support. There are only three reasons why you might continue to have these symptoms, and ask them point blank which one it is: 1) You have an unresolved medical problem or 2) You are imagining your medical problem or 3) You are considering something 'normal' to be a medical or resolvable issue (ie, there is no treatment)

    Tell them this is causing a quality of life issue, and if the problem is 1 then you need it to be resolved. If it's 2 then ask them to send you to a qualified psychologist (who can rule out or resolve hypochondria). If it's 3 then ask them who can help you resolve your pain and suffering so you can be productive again.

    I'm sure I don't have the whole story from this side of the issue, nevermind the doctor's side of the issue, so I can't really weigh in on this particular case. My gut tells me that if this was a serious (ie, death at the door) case, then portions of his body would be failing in a detectable way. Especially if he's had this 'bacterial infection' for this long. Perhaps systems are failing and doctors haven't been given the chance (or time before switching) to find them. Funny thing about 'normal' levels of [measurement x] is that normal is a large band, and while you may fall in that band, it may not be normal for you. Until you have a comprehensive case h

  8. Re:He needs to relax by cmason · · Score: 4, Insightful
    He has been to many doctors, and all of them have found little to nothing wrong. ... Statistically, from the number and variety of doctors he's visited, a false negative at this point is incredibly unlikely.

    I can't disagree with this strongly enough. This is very true for common illnesses, but very untrue for rare ones. I should know: I was recently diagnosed with Hodgkin's Lymphoma, a rare cancer of the lymph system that about 8,000 people will be diagnosed with this year in the US [1]. I had the symptoms of it (swollen glands, itchiness; ie very nonspecific symptoms) for nigh on 3 years, and had presented repeatedly to multiple doctors, all of whom missed the forest for the trees. I knew something was wrong with me (even, I think subconciously, that I had cancer), but I believed the doctors when they diagnosed allergies, or mononucleosis, or some other prosiac illness. It was not until the disease had spread extensively until it was drop dead obvious that something was really wrong.

    I agree with the spirit of your post: he should let the doctors do the diagnosing. However, he should very strongly try to find the right doctors. Just like programmers, there's a huge disparity in talent between the good and the mediocre. Luckily, I found some good ones (I work at Mayo Clinic), and I'm doing much better now.

    -c

    [1] http://www.lymphomainfo.net/hodgkins/incidence.htm l

    --
    "If you are an idealist it doesn't matter what you do or what goes on around you, because it isn't real anyway."-R.P.W.
  9. Re:He needs to relax by Twylite · · Score: 4, Insightful

    Dude. The other day, a porn site popped up on my computer. Just popped up ; I didn't click anything. I ran Norton Anti-virus. I ran AVG. I ran ad-aware and spybot. I checked Windows update, I rebooted, I swore. Everything told me my computer was fine. Clearly it is, and I am mistaken.

    --
    i-name =twylite [http://public.xdi.org/=twylite], see idcommons.net
  10. Re:You get what you pay for. by owlstead · · Score: 4, Insightful

    Only idiots think in black and white. There are middle ways. Most of Europe is using it. You don't have to have a stalinist regime to have a social healthcare. It's even cheaper in the long run. Going broke for the rest of your life because you *think* you have an unknown infectual dissease would even scare me off.

    In a world where 1% of the people provides food and another one prevents housing, why can't you get free healthcare in America. It would cost a few percent of the war in Iraq (which will flood the hospitals in the years to come, even if the fighting would stop now).

    Anyway, the repuplican party is showing the whole world that a country led by companies and bureaucratics can be equally bad to those regimes you just mentioned. It just takes most of the public in the US some time to catch up with the rest of the world on this.

    And as a last point, yes, I would go to my doctor, and if he can't fix it or points in the direction of a specialist, THEN I would go to that doctor. How the hell should I know what I've caught if I just feel sick. I would check the diagnoses of the doctor as well though.