Misc. Updates #3
It’s been a week of “shake ups”. Here’s the latest updates…
How I’m Feeling
Not great, but I’m surviving.
I’m dealing with pain and fatigue constantly as I try to stay upright and get work done. I’m typically in bed for 1-3 hours every day. I still have at least one “crash” most days, which are painful.
I was very glad to make it through the entire day yesterday without crashing. I was exhausted and uncomfortable, but I got a lot of work caught up.
I’m finding that a few things seem to help:
Stay on the liquid diet nutritional drink as much as possible. I keep experimenting with solid food, and it never goes well.
Keep exertion to a minimum. Even though I enjoy walking either outside or on our treadmill, it seems to irritate my gut nerves and I pay for it the next day.
Sit up in the just the right position. I’ve found a sitting position that causes less pain — sitting up straight and forward a bit. It places strain on my upper back and neck, so those areas are screaming by the end of the day. But it allows me to work longer overall.
Do stretches several times a day. I have a pull-up bar (from the days when I could lift weights and exercise). It’s helpful to hang from that and do various stretches. Eases the strain on my back and seems to relieve some pressure from my gut.
Nutritional Drink
I’ve been trying to get insurance coverage for a special nutritional drink for more than a month.
Even though the insurance coverage came through, there’s been constant delays dealing with the medical supply company (Lincare). I’ve been in contact with them nearly every day over the last week trying to get their pricing in writing since it appears to be expensive. Still can’t get them to send it even though they promise it’s coming via email.
I was surprised to get a call today from Providence Home Health Services (PHHS) saying they were ready to place an order for my nutritional drink. Since I have Providence insurance, I guess this is their preferred way for me to be supplied. I wasn’t even aware that PHHS existed.
PHHS can’t provide the same brand of nutritional drink that I’ve been using (Kate Farms Peptide 1.5). Instead, they will provide Nestle Compleat Peptide 1.5. I’m wary of switching since my body can’t tolerate most nutritional drinks, but I’m going to give it a try.
The cost for a month’s supply of Nestle via PHHS should be only about $167 instead of the roughly $1000 I’ve been paying for Kate Farms.
So, overall, that’s a bit of good news, if indeed I can tolerate the Nestle brand.
Surgeon Selection
Over the weekend, I had settled on using Dr. Sheikh in California.
But yesterday, I heard about Dr. Starnes in Seattle, Washington who seems like an even better option.
Only a 3-hour drive away rather than 16 hours. Easier travel.
Would be away from home only about 1 week rather than 3. That’s easier on our kids and on my sister-in-law who would come stay with the kids while we’re gone.
Covered by insurance.
Removes entire ligament back to the spine, so there’s a good chance of long-term relief.
Thoroughly addresses nerves, following them even back under the liver. Again, a really good chance of long-term relief.
There are 5-6 patients in the MALS Awareness Facebook group commented that he has a great reputation for kindness, and follow-up after the surgery.
So at this point, things stand like this:
Connecticut Surgeon
Next step with Dr. Hsu is to get a celiac plexus block. I have pursued getting a CPB locally in Portland, Oregon and am stuck in the waiting game. Will probably be a month before they will review my CPB case, then another 2-3 months wait to get the CBP. Then another 6 months wait to get the surgery.
Nothing with Dr. Hsu would be covered by insurance. And it will take about a year to get the surgery. I’ve ruled Dr. Hsu out as an option unless every other path hits a dead end.
Los Angeles Surgeon
Next step with Dr. Sheikh is to get a surgery date nailed down. Waiting to hear from his team about possibilities in early December.
Dr. Sheikh is a good option, but probably second choice due to the distance.
Utah Surgeon
Next step with Dr. Richards is to get a celiac plexus block. I am seeing if I can get that done in Utah as it may be faster than getting it done in Portland, Oregon. I’m waiting to hear from Dr. Jefferson who does the CPB for Dr. Richards.
Dr. Richards is a good option, but my third choice due to the distance and not being covered by insurance.
Seattle Surgeon
Next step is to get a consultation with Dr. Starnes. I’ve sent all of my test results and asked my primary care doctor to put in the referral. Waiting to hear from Dr. Starnes’ office.
Dr. Starnes is currently my top choice. He’s nearby, covered by insurance, seems very thorough in his approach, and has a great reputation with other patients I’ve talked to.
Here’s the latest comparison…
| Dr. Hsu (CT) | Dr. Sheikh (CA) | Dr. Richards (UT) | Dr. Starnes (WA) | |
|---|---|---|---|---|
| Insurance | Not covered | Covered | Not Covered | Covered |
| Distance | Danbury, CT 5 hour flight Away from home about 3 weeks | Los Angeles, CA 1.5 hour flight 2 day drive Away from home about 3 weeks |
Salt Lake City, UT 1.5 hour flight 2 day drive Away from home about 1-2 weeks |
Seattle, WA 3 hour drive Away from home about 1 week |
| # Surgeries | 500, about 4 per week. | Has not answered definitively, but about 6 surgeries per year. (He mostly does pancreatic / liver cancer.) |
180 | Unknown until consult. |
| Success Rate | 92% | Has not answered definitively. Says he's never had a failed MALS surgery. | Greater than 90% | Unknown until consult. |
| Surgery Type | Open abdominal | Open abdominal | Robotic. Minimally invasive. | Open abdominal |
| Ligament | Removes the ligament entirely. Says he is the only surgeon doing this. Described as removing all the way back to the spine. | Removes ligament tissue around the artery. Says he doesn't remove all the way around as that could cause a hernia. Removes "enough so that it is not a problem." | Removes 4cm of ligament 270 degrees around the artery. (Removing 360 degrees could cause a hernia.) |
According to other patients, he removes the ligament entirely all the way back to the spine. |
| Nerves | Removes celiac ganglia. Strips the artery of its investing nerve sheath all the way from the aorta to the first order branches of the celiac artery. Does not cauterize the nerves. Says he is the only surgeon who removes nerves, but this doesn't seem to be true currently. | Removes the celiac ganglia. Says he addresses any damaged nerves in the immediate area, but seems to be conservative in how far he investigates damaged / inflamed nerves. | Removes the celiac ganglia. Removes any inflamed nerve fibers. Does not cauterize the nerves. | According to other patients, he is very thorough investigating and removing damaged / inflamed nerves, even beyond the celiac ganglian. |
| Celiac Plexus Block | Requires CPB. Getting it done in Oregon will take 3-5 months. | Doesn't require CPB. Does required doppler ultrasound (which is done now). | Requires CPB and prefers that it be done by his partner in Utah. But not covered by insurance. Not sure on timeline yet. | According to other patients, doesn't always require a CPB. Not sure yet about my case. |
| Surgery Date | Probably August-October 2021. (3-5 month wait for CPB, plus 6 month wait for surgery. | Tentative date already scheduled for early December 2020 | Probably January/February 2021 | Probably January/February 2021, but not confirmed yet. |
| Recovery | 5-7 days in the hospital. 1-2 weeks in CT before flying home. | 5-7 days in the hospital. 1-2 weeks in CA before driving home. | 1-3 days in the hospital. Can drive home any time after that. Not sure about follow up. | 1-3 days in the hospital. Can drive home any time after that. Probably drive back for 1 week follow up. |
Celiac Plexus Block
As a reminder, a celiac plexus block is a procedure where 2 needles are inserted (usually through the back) to inject pain medication (and sometimes steroids) into the area of the celiac ganglion nerves. This provides pain relief for anywhere from 4 hours to weeks.
Many surgeons require a celiac plexus block before doing any type of surgery to remove the celiac ganglion nerves. If the patient can eat food without pain, it’s confirmation that the surgery is likely to be successful. Wisely, surgeons don’t want to remove nerves unnecessarily as nerves are there for a reason.
Getting a celiac plexus block takes forever. It’s been almost a month of regular contacts and no significant progress.
10/14/20 - First contact with CPB provider. They need referral and procedure notes.
10/29/20 - Appointment with PCP to get referral sent.
11/3/20 - Appointment with surgeon to get referral / procedure notes sent.
11/5/20 - Checked with CPB. Still haven’t received surgeon referral / procedure notes. Contacted surgeon again.
11/6/20 - Checked with CPB. Still haven’t received surgeon referral / procedure notes. Once they do, it will take up to 30 days for my case to go through formal review. Then 2-3 months to get procedure done.
11/6/20 - Dr. Hsu’s (surgeon) re-faxed the procedure notes to Dr. Rosenblum (CPB).
11/6/20 - Dr. Richard (surgeon) is not very willing to do CPB in Utah. Will discuss and see.
11/9/20 - Heard from Dr. Richard’s office. They’ve agreed to let me get a CPB in Utah if I want. Now waiting to hear from the CPB doctor their about possible scheduling.
A Note To Doctors About Empathy
I was a bit hurt by the lack of compassion from one of the surgeons I talked to.
When I mentioned how hard it was to wait so long to get surgery, his response was: “Well, you’ve made it 10 years. And this is not life threatening. So you’ll be fine.”
While that is scientifically probable, it wasn’t emotionally comforting at all. It felt like a denial of the pain my family have endured for so long.
What he doesn’t realize is that prolonging my surgery for another year also..
ANOTHER YEAR INCREASES MY SUFFERING:
My MALS symptoms are getting progressively worse. Even though I’ve made it 10 years so far, it’s becoming harder and harder to keep going.
ANOTHER YEAR GREATLY REDUCES QUALITY OF LIFE:
Quality of life counts for something. I’ve had to go down to a liquid diet. Even though that’s helping me survive, I want more than survival.
ANOTHER YEAR INCREASES EMOTIONAL / MENTAL STRAIN:
There’s a tremendous emotional and mental health burden to MALS. Gut dysbiosis and malnutrition sometimes cause debilitating bouts of anxiety, panic attacks, severe depression and suicidality. Unless you’ve been there, it’s just not something most people understand. (In fact, in my experience, these are things that people are afraid or ashamed to talk about. There can be a tremendous stigma with them.)
ANOTHER YEAR INCREASES FINANCIAL STRAIN:
I have come close to shutting down my self-employment business twice in the last few years. That would have a massive impact on our finances, especially with things like…
Our ability to pay for our kids’ college education
Our ability to pay our mortgage and keep our house
Our ability to pay for my medical care
ANOTHER YEAR AFFECTS MY FAMILY
All of the above items aren’t just my burden. The strain affects my family, too.
Losing my income could greatly affect the trajectory of my children’s life when it comes to college and career options.
My kids are leaving the nest. The oldest is already on her own. The second will leave for college next fall. I’ve missed being fully present in their lives over the last 10 years and will never get that time back. I have a limited amount of time with them now and want to make the most of it while I can.
I’m also not fully present for my wife, either. She bears an incredible load keeping our house and family going.
That said, I understand that the medical system is terribly sluggish and a bit broken. There’s not a lot that the surgeon can do about that.
All I’m asking for is a bit more compassion to understand the suffering patients are going through. Please be very careful about minimizing or dismissing someone’s suffering.
It’s possible that doctor was trying to be reassuring by saying, “You’ve made it this far. You can make it another year.” But that’s like saying, “You’ve just run a marathon and you’re exhausted. But we’re going to move the finish line another 26 miles away. You just did it, so you can do it again. Don’t be a wimp.”
When you reach for words of compassion and empathy, try for affirmation rather than assurance. Don’t tell someone, “You’re going to be okay.” Because it isn’t okay and it might not end up okay. More than once, I have been suicidal on this journey. Telling me that I’m going be okay just rings hollow.
Instead, affirm and acknowledge their experience. “What you’re going through must be very hard. I’m so sorry you’re going through this. What can we do to support you?”