Driving to Los Angeles

The 2-day drive to Los Angeles went well overall this weekend. Glad to be here just days away from surgery!

Sitting up is often a very uncomfortable position for me, so I was sort of dreading the drive. I didn’t feel so great on the Saturday drive, probably because I had a scrambled egg as part of my breakfast. More on that in a bit.

Thankfully, we have a van and were able to take the seats out and create a bed so that I could lie down any time I needed to. At first, we were thinking of putting a twin bed mattress in the back. But to save space, chucked that idea. Instead, we put down a couple of yoga mats, then a self-inflating 3” camping mattress. That was cozy enough for me to lie down on for quite a bit of the Saturday drive.

Sunday was much better and I was able to sit up the entire drive.

The Wonders of KFC

One surprising thing that I read from other MALS sufferers is that they can tolerate some fast food better than “normal” food. Not that they can eat any fast food, but certain items.

This might be because most fast food isn’t really “food”. It’s full of preservatives and who knows what else. Many people with MALS have food intolerances to histamines and salicylates, or have MCAS (mast cell activation syndrome).

My hypothesis is that all of those preservatives might reduce people’s reactions. But I have really no idea how true that might be.

Emboldened with that very unscientific guesswork, I decided to try eating Kentucky Fried Chicken during our journey — just the dark meat with the skin/breading removed, and also the green beans.

That seemed to work! The meat is super tender and the green beans are soft. As usual, I can’t eat that much at a time, but at least it was some variety.

(At this point, my mother, who I’m sure is reading this, is freaking out that KFC has gluten. I went gluten-free many years ago when my health issues started, thinking that gluten might be the issue.)

Since being diagnosed with MALS, I’ve realized by testing that gluten doesn’t seem to be the problem for me. It’s just that bread clogs up my digestive system and increases the sensation of pressure, pain and nausea.

So, yay, for some KFC as a food option while on the road!

(Disclaimer: If you have MALS or food sensitivities, I’m am not suggesting that you go try to eat fast food. Please consult with your doctor or dietician.)

Mast Cell Activation Syndrome (MCAS)

As I mentioned, my primary care doctor was already testing / treating me for MCAS when she first started to suspect that I had MALS as the true underlying issue of all my health problems.

What’s not clear is whether, or how soon, my MCAS will go away after my MALS surgery is over.

I’m also not clear on how much of my fatigue and “crashes” are due to MALS vs. MCAS. My dread is that I may still have “crashes” even after my MALS surgery is done — if indeed the “crashes” are actually some sort of food reaction and not just a pain / nerve reaction.

From what I read, most people notice an immediate relief from MALS pain when they wake from surgery. But the true recovery takes up to a year.

That’s probably because it generally takes 6-12 months for the lining of the intestines to heal. And the longer the damage has gone on, the longer the recovery.

Anyway, my MCAS is definitely part of this equation, as it is for many other MALS sufferers. The MCAS is why I felt so bad on Saturday — because I had an egg for breakfast, which seems to be a MCAS trigger food for me. Plus, I had my nutritional supplement drink (Kate Farms and Nestle Compleat), which also likely trigger my MCAS and salicylates reactions because they are plant-based.

To help reduce my MCAS symptoms, I’m resuming taking Allegra. Typically, MCAS patients will also take an H2 blocker like Pepcid AC, and a mast cell stabilizer like cromolyn. but I tend to feel worse with Pepcid because it reduces stomach acid, which is needed in order to break food down. And I didn’t bring my cromolyn with me to LA.

Pre-Surgery Testing

Today was a couple of hours of pre-surgery testing.

For those with MALS who want to know, here’s the list:

• EKG to make sure my heart is okay

• Chest x-ray to make sure my lungs are okay

• MRSA nasal swab culture to make sure I don’t have a staph infection

• COVID nasal swab for obvious reasons

• Urinalysis

• PTT test to check my blood clotting

• Complete Metabolic Panel

• Complete Blood Count

They also had an ultrasound on the list (Vas Mesenteric Arterial Duplex), but I got to skip that one since I had already had that done recently back home. That saved me a lot of hassle and time because it would have meant going to a different location and trying to get a last-minute appointment.

Most of my tests came back fine so far, so I don’t expect any issue with surgery.

The abnormal tests were low white blood cells, low hemoglobin, low hematocrit, and low alk phos. That type of result has become normal for me since I’ve been sick. From my understanding, it basically means that my body is constantly fighting. This is probably from MCAS, or from EBV (Epstein Barr Virus), which has become opportunistic in my compromised body.

I can’t say enough wonderful things about my experience with the Hoag medical system here so far. Everyone was wonderfully kind. They had a staff person whose entire job was to walk patients to various testing areas, explain what would be done, work to make sure everything was going smoothly between departments, and make sure the patient had everything they needed every step of the way. It was truly remarkable. I don’t know if this is something they are doing just because of COVID and they want to limit patients wandering around — but it was wonderful and unlike any care I’ve experienced anywhere else, even Mayo.

It’s A Relief Just To Be Sick

I’m taking off work from 12/4/20 all the way through 1/4/20. So the last few days have just been a relief mentally and emotionally. For once, all I have to deal with is just being sick. No work deadlines, rush projects, and trying to keep all the plates spinning.

After lunch today, my wife and I were able to walk along the boardwalk next to the beach. Later, we also walked in a neighborhood and enjoyed seeing people just doing normal things.

So even though some days are still rough, I’m very grateful to have fewer things to push around in my emotional wheelbarrow.

And on that note, a huge thank you to my sister-in-law for staying at our house with our kids while we’re away. Words just can’t express how much that means to us! Thank you for sacrificing so much of your time and energy!

And now… just sit around and rest a few more days for surgery day on 12/10/20!