Thursday, 13 April 2017

Home From Hospital

I am home, freed from hospital, sitting in my wheelchair at my dining table, enjoying a coffee, after another bout with a serious bladder and blood infection. I seem to be prone to this type of infection, more serious than a simple bladder infection. Bladder infections are common, so common that most of us get them and defeat them without ever noticing. Mine go a different route, where I fit what is called the SIRS profile; Systemic Inflammatory Response Syndrome, sepsis, severe sepsis, septic shock, and multiple organ dysfunction syndrome.

In other words, I get really sick when I get sick. None of this pissing around with a couple of aspirin. On the plus side, the Enterococcus fecalis bacteria I grow is susceptible to Ciprofloxin, so it can be treated if responded to in a timely fashion. Nonetheless the roller coaster from well, to dribble, to shakes and shivers is a real heart beater. In fact this time my heart did get a bit of a beating. They added tachycardia to the list, just for the hell of it.

It's kind of odd that when I get a UTI, it spreads almost immediately to my kidneys and blood stream. I know what happens. That bacteria works quietly in the background. I dribble when I pee. I feel bad. But I'm not really sure I'm sick. All men my age dribble a bit. Living with ALS makes me exhausted and tired.  Then the sepsis sets in, and I am on death's door with only a few hours notice. I wonder if this is what will take me one day. It's a good possibility.

ALS is not supposed to cause this. In fact my neurologist is insistent that this is not ALS related. I beg to differ with him. I know that ALS will likely not be the cause of my infections, but I know that I have what is called a neurogenic bladder, an issue arising directly from ALS. You see, my neurologist is only looking at the nerve issues, not my whole body. That's why we have a team approach to my treatment. The neurologist may be right or wrong, it doesn't matter. Someone else will chime in too.

For today the wolf is once again pushed from the door. The chill of night is about to replaced by a warm beach in Mexico. Yes, I was sick. Soon I will be well again, or sick again. There's damn little I can do about it, except keep living until I die.


  1. Glad you are better! Mexico awaits you!

  2. So glad you are better, I hope you have a great trip! I did not know about neurogenic bladder, but it makes total sense!!

  3. Have a great va-k! Hoping to your trip run without too many hassles.....

  4. Glad you are feeling better. I am just beginning this ALS thing (working on a second opinion, so it isn't official) and appreciate reading about your experiences. Thanks for being so open.

  5. My husband got diagnosed with ALS in January. It's a really shitty disease. It's good to hear the trials and tribulations, joy and sorrow from someone living it and unafraid to share. Thanks.

  6. There are many people on the internet who will all vociferously disagree with your doctor about it not being ALS related. It's a common discussion amongst the many people I connect with via MND discussion groups and forums. Whether it's because of insufficient bladder emptying, dribbling, depressed immune system or some other as yet undiscovered process, bladder/kidney infections, and sepsis is common for those who suffer from MND. It's like saying aspiration pneumonia is not related to ALS. It most certainly is.

    rant over

    Enjoy your trip to Mexico! It might be a good idea to bring some emergency antibiotics with you just in case.