Trying to Find Stability Post-Nephrectomy
What’s Happening
I’ve been talking quite a bit to my dietician, primary care physician, and a new doctor who is a neurogastroenterologist (specializes in MCAS, dysautonmia, GI, POTS, and EDS). Unfortunately, they are all at different locations/heath systems so I have to coordinate.My instinct is to hide and not share any of this because it’s messy and I’m in the middle of it with no real action yet. But I’m going to try and share some of it. Because as we all know, none of this journey has been straightforward or easy.
I’ve been feeling very unwell. And though the surgery did contribute some extra trauma to my body and cause more mast cell activation… it’s not the main culprit. I’ve mentioned a few times now that I’m still dealing with SMAS (duodenum compression). Because of that it’s impacting my whole body. There’s so much at play with makes it hard for me to articulate a good explanation. It creates a continuous bad cycle on the hamster wheel.
SMAS puts my body under constant strain. The compression interferes with digestion and sets off mast cell reactions, which then dysregulate my nervous system. That’s why I deal with blood sugar crashes, heart rate spikes, pain, nausea, migraines, poor absorption, and feeling weak or lightheaded when I’m upright.
The Full Chain Reaction (Put Simply)
SMAS
(Superior Mesenteric Artery Syndrome)
⬇️
Duodenal compression & gut stress
(food struggles to pass through compression area)
⬇️
Mast cell activation
(Immune cells releasing too many inflammatory chemicals due to overactivation)
⬇️
Inflammation + motility disruption + pain
(I’ve quickly discovered it also makes pain meds ineffective most of the time)
⬇️
Autonomic Dysregulation
(temp dysregulation, heart rate instability, poor circulation, tissue hypoxia)
⬇️
Glucose Instability + Malabsorption
(Glucose crashes causing shaking, lightheadedness, nausea, body buzzing
Malabsorption causing low lipase, HDL, iron, and weight loss)
⬇️
Weakness, nausea, migraines, postural intolerance
⬇️
Further stress → worsens everything above
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| DYSAUTONMIA - Click image to read a more in-depth article Image Credit: https://thedysautonomiaproject.org/ |
Next Steps
-My doctor is ordering IV iron infusions for me. I think this is why the past few days I’ve felt extra awful. My iron serum dropped from 43 to 21, iron saturation from 12% to 6% in 7 days :( This is likely a combo of MCAS, malabsorption, and heavy periods. There is also a supplement called lactoferrin that helps with regulation of iron and the immune system that I can take. Traditional iron pills are very hard on the GI system.
-Run a nutrient blood panel to see if there are other deficiencies
-Eval for POTS (postural orthostatic tachycardia syndrome) - using the NASA lean test (tilt tables can be very traumatic I guess) - I already know my HR jumps quite a bit when going from laying to standing, but not sure what my BP does
-Run a nutrient blood panel to see if there are other deficiencies
-Eval for POTS (postural orthostatic tachycardia syndrome) - using the NASA lean test (tilt tables can be very traumatic I guess) - I already know my HR jumps quite a bit when going from laying to standing, but not sure what my BP does
-Work on MCAS (mast cell activation syndrome)- he has had the most success oddly enough with micro doses of Ozempic. Multiple times he commented that he knows it sounds weird and did not think he’d ever be using it, but apparently in micro doses it’s proven to help calm mast cells which would then help with inflammation and leveling out glucose. He said hypoglycemia is very common in MCAS. My dietician gave me a continuous glucose monitor and it’s showing that my glucose overreacts… so when it starts dropping my body pushes adrenaline/cortisol which makes my glucose jump up, but it overshoots, so then it will often crash again. It’s maddening.
-Wants me to consider tube feeding - this would likely be an NJ tube so it bypasses my stomach & duodenum compression and goes straight into the jejunum (small intestine) the point of this would be to get steady nutrition/calories and let my stomach get some rest along with preventing some of the pain from the compression. Basically I have constant stress around eating so this could greatly stabilize me in many ways
- My dietician has been trying to get me other options to help get more calories but it’s been an ordeal. They make gel packets that you can take to add extra calories and protein, it’s called ProSource XtraCal. She’s trying to order as a prescription. I could order online but frankly I’m so tired of how expensive I am. YES, I know, this is my health. Just feeling buried at the moment as we wait for reimbursements and the decision on my appeal.
It’s a lot to process. I also need to talk to my surgeon and ask about the tube feeding and his thoughts as well. I know many of his SMAS patients have them before surgery. I know he started using them for the first few days after surgery to help with healing before jump starting digestion too quickly. He’s found it often causes a setback otherwise, ileus (temporary intestine paralysis) being a common one.
As for the nephrectomy recovery, it’s slow. Still occasionally get some sharp stabby pains. It seems my cycle is going to continue to cause more cramping than necessary for 5/6 of the month. This should keep improving with time as my blood flow regulates. But for now I’m dealing with a lot of pelvic and low back pain.
<3 Ash
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