Managing a Critical Illness

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.