David Burge Updates

David Burge updates his journey with leukemia

Managing a Critical Illness

with 3 comments

I have read a couple of books about BMT from the patient’s point of view. The most helpful has been 11th Hour Miracles! Surviving a Bone Marrow Transplant. She shares the emotional and physical toll that having a bone marrow transplant takes. I think it helps to know what to expect. Although each person’s illness and recovery will be different, her advice is sound and applies to anyone facing a critical illness.

One of her suggestions is to “imagine you’ve just been employed by the hospital to get your health back. Work with your doctors and nurses.

This advice indirectly acknowledges the level of effort; it is a full time job, the pay being, hopefully a return to health.

This advice means that it is helpful to be proactive in managing your treatment. Dave has several different doctors and even different departments of the hospital that he is dealing with. While ideally, all this information should be stored in one online file, this does not seem to be the case ** (see below) . Dave sometimes has to bring to the attention of a doctor, a piece of information  given to him by a different health professional. For example, on Friday he had to have another scan of his leg to check his veins because of increased pain. He brought to the attention of the doctor that recently his platelets have been very high. This was very important and also unexpected, given the chemo he is undergoing. The doctor found the information almost unbelievable and went away to check. Yes, it was so. Therefore, a different course of action was to be taken: an additional course of injections to bring the platelets down, to avoid the risk of clotting. Even when dealing with one doctor in regard to one situation, s/he may be dealing with hundreds of patients, hundreds of results. It can be helpful to give quick summary to remind the doctor what was last discussed and what has happened. This allows the limited time for each appointment to be used more productively.

This advice (to consider yourself employed) is a reminder to keep the relationship professional and polite! A natural friendship might develop, just like in a workplace, but if there is no natural affinity one still needs keep good communication.

I think this piece of advice is helpful for me too. In this post I mentioned a very helpful conversation I had with a physiotherapist, an occupational therapist and the charge nurse. If I was working for the hospital with the job description to get David well, I would not hesitate to speak to my co-workers. There is something very disempowering about the hospital system and any large bureaucracy for that matter.

**only a fortnight ago the pharmacist at the hospital was querying my change of address. It was correct on the Ward computer and the Day Stay computer, but not in the pharmacy. The pharmacist assured me that this was impossible because they were all on one system and I should update it with the Day Stay.

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Written by admin

January 18, 2010 at 12:03 am

3 Responses

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  1. There is something very disempowering about the hospital system and any large bureaucracy for that matter.

    I believe that these things are disempowering because they are in no way accountable to you and there are no alternatives that you can go to, so they hold all the power when you are forced to go to them and ask for their help. Think of Oliver Twist begging for more porridge and you’ll get the idea.

    Cf, you are empowered by a free market system. When you go into a shop you have the power that comes from having the freedom to keep your money and walk out if they will not or cannot provide what you want.

    Warning: a political rave follows.

    If Dave had not pointed out the high platelets the worst case scenario would have been a fatal pulmonary embolism secondary to deep vein thrombosis. This incident shows how a state/socialist health system, which has nothing to motivate it to provide the best possible care*, can be lethally incompetent.

    In New Zealand there is often no alternative to the state hospitals if you have a critical illness, and if you experience major trauma (eg from a car crash) there simply is no alternative. People are expected to entrust their lives to hospitals where the different departments cannot even agree on what the patient’s address is!

    Last year Auckland got a new community laboratory company (that’s where you go when your family doctor orders a blood test). The public were given no say in the matter and no alternatives are allowed. Even if you are willing to pay for the blood test you are not allowed to go to the competing laboratory! Unlike the former company, this new outfit does not allow doctors to graph test results over time and will not provide a copy of the test results for those patients who wish to monitor their own health problems. This is an egregious example of disempowerment by the state/socialist health care system (the last two words are used for the sake of convention, not descriptive accuracy :)).

    What we need is freedom of choice when it comes to health care. Then people will be able to vote with their feet and their wallets when a hospital is lethally incompetent, and only then will such hospitals be motivated to improve their standard of service. Only then will we have laboratories that will provide what patients want and need. Only then will patients be able to properly do their job, which, as Tarnya says, is to get their health back.

    *individuals within the system may be personally motivated to provide the best possible care, but that is something else entirely and my personal observation is that such people are hampered in their efforts by the system.

    Mandeno Moments

    January 18, 2010 at 6:57 am

  2. Hi Dave,
    I hope you are coping well. I was reading up on health things and noticed on a site talking about how vitamins are not as helpful as people thought. It says “Popping certain kinds of antioxidant pills can feed latent cancers growing in the body, for instance, and reduce the effectiveness of chemotherapy.” So I wondered if you were taking antioxidants and vitamins? You can read that quote on the 6th paragraph on this site.
    http://www.slate.com/id/2240688/

    Cheers
    Craig Blaxall

    Craig Blaxall

    January 19, 2010 at 12:05 am

    • Thanks Craig,
      I have read that too elsewhere
      http://www.nutritionandcancer.org/view/nutritionandcancer/s99p1074.htm
      “While it is likely (although not proved) that excellent nutrition strengthens the immune system and other defense mechanisms in such a way as to lower the probability of contracting cancer, it is clear that, once cancer has established itself, excellent nutrition leads to its accelerated growth. This may not be true of all cancers, but it is likely to be true of a large fraction of them.”

      Tarnya

      January 19, 2010 at 7:41 am


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