Tuesday, January 24, 2017

Sooner or Later

Sooner or later, ALS affects a person’s oxygen levels.
This is important to know because there are certain procedures and surgeries that require a certain level of oxygen or they cannot perform it. Which segues into the importance of nutrition and the need to have a feeding tube placed earlier than when it’s actually needed.
My husband is losing weight at a rate that I would envy if it didn’t come with this debilitating disease. Most people who have tried to lose weight know that muscle weighs more than fat. Since ALS causes muscles to atrophy because they no longer get signals from the brain to move, this muscle loss causes the drop in weight. Since diagnosis eight months ago, Bill has lost 15 pounds. That’s without dieting or working out.
Eventually, Bill will need a feeding tube. And eventually came up NOW. His oxygen levels have fallen to almost 50% of capacity, so the ALS team recommended he get the feeding tube before he really needed it. The procedure (if Twilight drug is used) or surgery (if anesthesia is used) is supposed to be one of the quickest, easiest of surgeries.
After Bill’s procedure around noon today, he should get discharged tomorrow morning after the doctor’s assessment, as long as there are no complications. Of course, everyone reacts differently to anesthesia, pain, etc. Other ALS symptoms can pop up after surgery, as in the case of my hubby. He has what’s termed as Vagus Nerve (in very short terms).
Vagus Nerve (sounds like a gambler’s attitude, doesn’t it?) interfaces with the heart, lungs and digestive organs. Bill has had symptoms before, but I never heard a name attached to them until now. 
Bill gets nauseous first, which quickly turns into the feeling that he will pass out. I’ve seen him get shaky and turn ashen, yet his blood sugar and pressure numbers are normal.
This condition caused me to panic. It caused the doctors and nurses to come running when they took his blood pressure – 50 over 39 The crash cart was rolled in, an IV was started with fluids and his bed was lowered. No less than 3 nurses, two doctors and several interns crowded into the room. I moved into the corner and kept quiet, silently praying. 
Good news! The fluids and oxygen slowly improved his pressure, until it stayed at an even keel with normal numbers. The pain went from a 9 to a 2, and his color returned. Whew!!
I know that there will be more episodes that will be scary. I will travel a roller coaster of emotions with each one. That’s one of the ways ALS affects caregivers. It helps to have a strong support group – family, friends, counselors and other caregivers – to maintain sanity and patience. I am lucky to have them all, and a social worker who advocates for you when you can’t advocate for yourself or your loved one.

Hang in there! We can travel the road together…


  1. Hi Pat- Oh my have you both been through a lot!!! This had to be a very scary experience for you. It is great to know that he is recovering. Prayers to the both of you! Sue

  2. Hi Pat - I checked in to find 'no' updates since Jan. How are you and Bill doing..........how did you fare with the last storm? Talk with you later, email or pm me anytime. Missing you!