Tuesday, May 6, 2008

Goodbye to a family member

Please note: This was written a couple of days ago. My uncle's body lost the fight yesterday morning, on my one year wedding anniversary. Some of the information here has been changed for the purposes of privacy, so events may vary slightly from reality.

J's ankle was really bothering him. It hurt quite a bit, and wasn't getting any better. He got the brush-off from doctors who said the x-ray was fine, so there's nothing to worry about.

My aunt (J's sister) and her husband had a feeling that it was something fairly serious, and they suggested that the doctors test for infection--specifically a staph infection, because that was what his symptoms pointed to. My uncle's doctor did a CT scan on the ankle, and declared that there was nothing wrong. My uncle grew progressively worse, and started to have some back pain as well.

As you may know, you don't diagnose a staph infection with a CT scan. The usual method is to sample blood or fluid from the suspected site or do a nasal swab and run a culture--which can take 2 to 3 days to give results. I'm not exactly sure how they finally manged to talk the doctor into doing the test, but he finally did. The results revealed that my uncle was infected with MRSA, Methicillin Resistant Staphylococcus Aureus.

MRSA is living proof of the existence of evolution. It is a strain of bacteria that has evolved to become resistant to many antibiotics, making it very difficult to treat, especially in already-compromised individuals. It kills more people in the US per year than AIDS, and it is a lot easier to transmit than AIDS. It is a very nasty microbe.

A few months ago, my uncle was hospitalized and very ill because he has liver disease. He was not expected to survive, but he rather miraculously pulled through and was able to go home. It was predicted that, as long as he never took another drink, and didn't take drugs (legal or not) that were damaging to the liver, he could expect to live a fairly normal lifespan. He had just enough liver function remaining to survive and eventually get well again.

The problem is, most of the antibiotics used for MRSA are also pretty harsh on the liver and other organs. Not only does the liver get damaged and possibly shut down, but the lack of liver function leads to shutdown of other organs, especially the kidneys. My uncle's kidneys began to fail; he retained a great deal of fluid (over 50 pounds of it), and metabolic wastes were building up in his system. When my mother called to tell me this, my first question was, "Why aren't they doing dialysis?" She didn't have an answer for me, except to call later and tell me that they decided to try it.

Now, the whole time he's been in the hospital, my family--grandma, aunts, etc.--has had to pretty much be there in the room non-stop. Not just because they wanted to be there for J, but because the staff kept doing idiotic things like giving him the wrong medications, refusing to do proper wound care (they passed the buck to about four different departments before the radiology department finally did it because they were exasperated at his dire situation and lack of care), and a lot of other little things. There were several instances where my grandmother had to interrupt a nurse who was beginning to administer a medication and ask her what it was, and who prescribed it, and the nurse looking at the chart to see that she was not giving him the right thing.

J had been struggling pretty hard, but Sunday afternoon, the doctor decided that he isn't responding to treatment, and so they are switching over to palliative care only. Color me cynical, but I wonder if he would have had a better shot at survival if they'd started dialysis sooner instead of waiting until the last possible minute.

His fight has reminded me all the more painfully that we must be vigilant and well-educated in regard to our health status, and that we need to have the courage to strongly advocate for ourselves and our loved ones, even when medical staff don't want to hear disagreement. Dr. Ego may feel a little bruising to his pride when we do so, but his mistakes and pigheadedness affect OUR bodies, to the point of possibly maiming or killing us. If you are not getting anywhere with a medical problem because a doctor is brushing you off, talk to another doctor. If that one won't listen, get educated about your possibilities, and then make them test you for what you believe is the most likely problem. Know what those tests are, and be specific--MRSA is not detected by a CT scan, and brain tumors are not found in pap smears. YOU live in your body, and YOU know better than anyone else what you are experiencing. Don't let someone belittle your experiences and blow you off. It could save your life.


Fat Academic said...

I am so sorry for your loss. It is disgusting that human beings can be treated like that by the (supposed) caring professions. Absolutely appalling. I hope your family is able to celebrate your uncle's life and remember him well.

Mary said...

Please accept my condolences. I had similar concerns about my mom when she was ill with a very rare auto immune disease. We kept telling the hospital staff that she was sicker than they were saying. She died hours after she was discharged from the hospital against our wishes.


Mary said...

Rio, thank you so much for your greatly moving post. I am adamant about the importance of having a family member or friend to be a health care advocate when one is in the hospital, if at all possible, precisely because of situations like the one you describe. I am so sorry that your uncle lost the battle, and so glad that he had family with him to help him in the fight.

geogrrl said...

I'm terribly sorry for your loss AND for the fact that your family had to be so vigilant with your uncle's treatment. This was already a difficult time, and they shouldn't have had to shoulder that burden. Supposedly that's what medical professionals are for. I've had similar fights with medical professionals over treatments and tests.

Where was this hospital, so I know what city/town to avoid?

Harpy said...

I'm really sorry to hear of this, Rio. My sincere condolences. My father died of something similar. Thankfully, the hospital staff did everything right but there was ultimately nothing that could be done.