How I’m Feeling

I wake up every day feeling still exhausted. Takes a lot of willpower to stay upright and keep working throughout the day.

On the phone and Zoom calls, people tell me I seem cheery and healthy. But that’s just because I’ve just learned how to hide my exhaustion. I’d lose my clients if I sounded like I was sick all the time.

Even though the medical supplement drink gets me nutrition and calories, I also have a reaction to it that makes me pretty tired and can cause a “crash”. (A “crash” isn’t due to blood sugar or blood pressure. It seems to be some sort of autonomic reaction when the nerves in my gut get irritated. It’s painful and puts me in bed for 1-3 hours each time it happens. Even though I sort of sleep through it, but it’s a restless, difficult sleep and I wake up very tired.)

But I’ve hit on a strategy that seems to help. It’s a modified version of what they call “intermittent fasting.”

• Wake up and take my thyroid medication

• Drink my coffee

• Skip any breakfast and get to work

• Nibble at jello or gluten-free waffles through the day

• Get the bulk of my nutrition and calories via the medical supplement drink in the evening

With that approach, my mind is clearer in the morning and my mood is better. I’m still tired, but can work almost a full day sitting at the computer.

The downside of this approach is that my blood sugar can plummet if I’m not careful (like it did a couple days ago). If it drops below 70, I get the typical low blood sugar symptoms of sweating and shakiness. But I’ve learned to keep an eye on it and head that off before it happens.

Nutritional Drink

If you’ve kept up with recent posts, you know that:

• I’m on a mostly liquid diet using a nutritional supplement drink. Otherwise, my weight drops, I get malnourished and end up with even worse issues.

• I’ve been using Kate Farms Peptide 1.5, which costs about $1000 a month when purchased directly. I can buy it through Lincare, a medical supply company, but I think there’s something fishy going on there. Even though I would pay only 20% of the cost, the overall price gets inflated to the point where I’m still paying about $1000 a month. I’ve asked for their pricing in writing and have been promised that it is coming multiple times, but nothing has ever come through. They’ve stopped contacting me, which again — seems fishy. I’ve given up on that route.

• My insurance will cover a similar drink, Nestle Compleat Peptide 1.5, which should cost me only about $167 a month. I’ve ordered a 2-week supply to try it out. It arrived just as I was typing this, so I’m trying it out today. It’s meant for tube feeding, so the taste isn’t nearly as good as Kate Farms, but it’s tolerable. I’m watering it down as it’s pretty thick.

After I’ve tried the Nestle Compleat, I’ll post a separate review and comparison of Kate Farms vs. Nestle Compleat for any other MALS patients out there.

Surgeon Selection

Things have really stagnated on the surgery progress.

My preference by far is to get surgery with Dr. Starnes in Seattle, but I haven’t had a consultation with him, so I don’t know how likely that is yet.

Dr. Sheikh in Los Angeles is still an option, but the tentative dates of December 8th or 10th are not confirmed yet.

Regardless of which surgeon I choose, my expectation is that the rising COVID numbers are doing to delay things.

I’m already seeing from other MALS patients that their surgeries are getting postponed.

SIDE RANT: Most MALS patients are in severe pain and are often denied any pain medication due to the the opioid epidemic. Doctors assume they are faking their pain in order to get drugs. Or the doctors may be limited on what drugs they can give out now. I don’t know.

Many MALS patients suffered for years before getting diagnosed and endure agony. Some have waited another year or more to get surgery. And now, just weeks away from relief, their surgeries are getting cancelled.

Most heartbreaking to me are when the MALS patients are children. Parents write how helpless they feel as their child has to endure so much pain.

It’s situations like these that make me disappointed at how cavalier so many Americans have become about social distancing, wearing masks, and avoiding family gatherings. It’s not just their lives that they are affecting.

Even if most people don’t die from COVID, the sheer number of tests and cases are straining the medical system. That has a larger ripple effect on people like me.

Please, for the good of others, stay home, stay isolated, wear a mask, and stay healthy. Please don’t gather for Thanksgiving and Christmas. Think of it as your act of love and kindness.

So for surgeons, things stand pretty much the same. So rather than post about all the different surgeons, you can read up on my last post.

A Word About Tenacity

I will say to any other MALS patients out there: BE TENACIOUS. The squeaky wheel gets oiled.

To get through to Dr. Starnes’ team in Seattle, I’ve had to call every single day for an entire week.

Each time, I have to speak to the hospital Scheduling Department. I ask my same list of questions:

• Did you get the referral from my primary care doctor?

• Did you get the CT scan images that the radiologist sent over?

• Did you get the narrative reports for my CT scan and doppler ultrasound that I faxed over?

Each time, I’m told the same thing:

• I don’t see any of those things in your record.

• I will try to contact the Vascular Surgery Department. There’s no answer there. I will leave a message.

• You should hear back within 24 hours.

Then I hear nothing.

So I call back again the next day and repeat the same conversation.

Finally, after a week of trying, I got a response from the Vascular Surgery Department yesterday. But there’s no real progress. I was once again told, “I don’t see any of those items in your record, but I will check our pile of faxes.”

They will get back to me.

Yes. I’ve heard that before.

I don’t actually blame any one person in the medical system for things like this. I don’t know their world, their workload, or what causes the delays.

Experience tells me that it’s like this in pretty much every medical system.

I don’t know how to fix it, but I know that the system feels broken when patients have to fight this hard to get treatment.

Until it gets fixed — be tenacious!