Rare Gastric Bypass Complication

I used to be very active, an adrenaline junkie, a tomboy. I was a ski racer, surfed, rode dirt bikes, had a horse, am a scuba instructor, fly fished, was into WWII combat planes, climbed Mt Rainier, sky dived, and so many other things. Now I can barely walk my dog. What happened? How did I get here? Is it my fault? The doctors fault? Well it's no one's fault. It's just very very unfortunate. And now, I am taking the advice I once gave my sister... You have to learn to bend. Stop fighting it and accept how things are now and make the best of it. Yes, it SUCKS. Big time. But what choice do you have.
After my 2nd husband passed away at age 45 from lung cancer I blew out my back while moving to a new apartment. I ended up having 2 major back surgeries and ended up with cages, plates, and screws L3-S1. This put me out of commission for a while and I was barely recovered and had to have my knee replaced. I have since had the other one replaced as well. Hey, you have to pay a price for all the crazy things you do.
I had a lot of complications from the back surgeries and was on steroids for a long time and from that I gained about 60 lbs. I was never able to lose it no matter how hard I tried. I developed sleep apnea and had a bad hiatal hernia. The pain in my chest was terrible. After seeing a doctor at Brigham and Women's Hospital in Boston I finally got the correct diagnosis. My stomach was wedged in the hiatal hernia and kept getting squeezed. He referred me to a surgeon at Brigham. And so my story begins.....
I went to see the surgeon at Faulkner Hospital in Jamaica Plain, MA. It's part of Brigham and Women's Hospital. I knew I needed a Nissen Fundoplication to repair the hernia. I had worked in the Operating Room at a hospital in New Jersey for 16 years, so I had a good medical background. The doctor was very nice and pleasant. He was the head of Bariatric and Laparoscopic Surgery. He said he was concerned about my weight and said he didn't feel comfortable doing the Nissen Fundoplication because he felt if I didn't lose weight, the hiatal hernia would return within a year. He felt the best way to approach it would be with a Gastric Bypass. He took me by so much surprise that I couldn't really respond. I was underweight according to the guidelines by about 10 lbs. He said if I could lose 17 lbs he would do the Nissen.
I tried for 3 months to lose the weight only to gain the 10 lbs I was shy of to meet the Gastric Bypass Surgery Guidelines. By this time, I was losing work and was in and out of the ER all the time. I was desperate. I signed the consent and set up the Gastric Bypass surgery for July 14, 2015 at Brigham and Women's Hospital in Boston.
My 3 day hospital stay turned into a week. It seems like I have never felt well since that fateful day. And now, 3 years post op, I am in the rare 1% of people who have Gastric Bypass to get B-Cell Hyperplasia. B-Cell Hyperplasia has a few different names. It is also called Nesidioblastosis and PBH (Post Bariatric Hypoglycemia). To simplify things I will from now on refer to it as PBH. Here is an explanation of it in a nutshell. PBH usually occurs about 2 1/2 years post op. The Beta Cells in your pancreas are super enlarged. When you eat something they react and send out massive amounts of insulin which makes your blood sugar spike and then crash really low. I can go from a normal blood sugar in the 80s or 90s and eat something. I will spike to around 179 and then crash to the low 40's in about 15 minutes. This is not safe and feels absolutely terrible. I get neuroglycopenia. Neuroglycopenia is a medical term that refers to a shortage of glucose (glycopenia) in the brain , usually due to hypoglycemia . Glycopenia affects the function of neurons, and alters brain function and behavior. Prolonged or recurrent neuroglycopenia can result in loss of consciousness, damage to the brain, and eventual death. There is no cure for this condition. All you can do is try to manage it. This is what happens when you drop so low and pass out....

On top of this I was just diagnosed this week with Sensory Neuropathy and Autonomic Hypotension. The Autonomic Hypotension is possibly related to the Gastric Bypass as well.
So, when did I first get symptoms? I kept getting dizzy and light headed and numb. I could feel myself crashing but didn't know that is what it was. My primary care doctor prescribed me a glucose stick kit. It confirmed that I did indeed have hypoglycemia. I work in the Emergency Room at a very busy hospital doing patient registration. You are up and down and walking all day. On September 24, 2017 I was feeling particulary shitty. I did a finger stick. As I was waiting for the number to come up, a wonderful co-worker, Claudia, came over and aske me if I was OK. The meter beeped and we both looked at it and it was 41. She said "Don't move." She got the charge nurse and they wheeled me in my chair into a patient room. They rushed in with orange juice and muffins and sandwiches. They got an IV started and took blood. They kept taking my blood sugar readings and it would rise after I ate, but then crash very quickly after. The next thing I knew I was being admitted. I was also spilling glucose into my urine. This was on a Saturday so I knew I was there for the weekend. The hospitalist didn't know what was wrong and put in an Endocrine consult. He saw me on Sunday and said there was probably something wrong with me pancreas and may need part of it removed, but they didn't do that there and I would need to be transferred to Boston. On Monday I was transferred by ambulance to Brigham and Women's Hospital. Below is a picture of me with my daughter Kristin before I was transferred.

I ended up being in Brigham for 10 days. While I was there I was one loss of consciousness event and another time a Rapid Response and Code Stroke event. Thank God I didn't have a stroke. It was the lack of glucose to my brain.
I had a team of incredible incredible doctors and nurses. I was finally diagnosed with PBH. I didn't have an endocrinologist so I signed on with the doctor that diagnosed me, Dr. Mehmet Burak. He is wonderful. And now reality sets in. I am told that I have to eat very often, every two hours. I can only eat complex carbs, high good fat, and high protein. No sugar, flower, most fruits. I was also prescribed a glucagon kit. I was to carry it everywhere with me. It is an injection of glucagon. It is a medium that triggers the body (the liver) into releasing excess stored glucose. I was to use that in emergencies and if I couldn't eat to get myself out of trouble someone would inject me.
I had a lot of trouble getting the nutrition part of this right. They sent me to a nutritionist but they always gave me wrong advice on what to eat. This wasn't there fault. No one knew much about this condition. It only happens to about 1% of people so they weren't educated in it. I was crashing all the time. Dr Burak ordered me the continuous glucose monitor Dexcom 5. It wasn't going to be covered by insurance so I did a Go Fund Me to raise the money to get it. This device would give me my blood sugar readings every 5 minutes and also send it to my daughter's phone. I will get alarms if I am dropping or low. It was the only way I could get back to work.
https://www.dexcom.com/g5-mobile-cgm



The monitor is a life changer. It saves your life but also complicates it immensely. Now I live with alarms going off 24/7. As soon as it goes off, you go into panic mode which then sends my daughter into panic mode. It has taken months of adjustments to get the settings right.
You can see below how I spike and crash....

Dr. Burak was able to get me into a clinical trial for the Glucagon Pump which was being done by his mentor, Dr. Mary Elizabeth Patti at the Joslin Diabetes Center in Boston. She gave me a call and interviewed me and accepted me for the trial. I went in for bloodwork and screening and was declined because my blood levels were too low. They said I need iron infusions. My primary care ordered the tests and I was anemic and had very low Iron levels. I was scheduled for Iron Infusions at Dana Farber Cancer Center in Boston. I was to have 3 infusions spread out over a two months. After the 2nd infusion I was re-accepted into the Clinical Trial. The general idea of the Glucagon Pump is that it would automatically detect when you are getting low and administer small amounts of glucagon to keep your levels more steady. There were two visits. They would have me drink and Ensure which would cause me to spike and then crash in a controlled atmosphere at Joslin. I would be given either a placebo or the glucagon. The first visit I figured out they gave me the placebo because they had to rescue me with IV glucose. The second visit I was given the glucagon, but my body did not respond to it and they had to rescue me again with glucose. For some reason my liver is not storing glucose, so I don't have any in storage. Not good. This makes me very very nervous.
At this point it was discussed by everyone and agreed unanimously that I would be transferred to Dr. Patti's care at Joslin for my condition. Dr. Patti is actually the doctor that discovered this condition, so I couldn't be in better hands. I was set up with her nutritionist as well who has been with Dr. Patti since the beginning about 11 years ago.
My life consists of Dr appointments and eating and treating my blood sugar. Dr Patti has since put me on Proglycem. It is a nasty tasting liquid that slows down the release of insulin from my pancreas. My daughter and I have had several visits with nutrition and have made charts and put them on the walls in the kitchen.


This is far from complete. At each meal I have to eat something from List 1 and 2. If I want to I can add something from List 3 and 4. Eating out does not exist for me anymore. I can't have anything on the menus. My food costs are enormous. I spend a fortune on nuts, nut butters, Kind Bars, glucose gummies, etc. If I go out to a Dr appointment or the grocery store I always have a cooler with me with my special sandwiches and drinks. A loaf of bread is $6. It has to be sprounted grains. Nothing else. I can't use regular flour or even wheat, it has to be sprouted grain. $20 for a small bag.
Since my new diagnosis of Sensory Neuropathy and Autonomic Hypotension I now walk with a cane. I have fallen too many times, even knocked myself out when I hit my head on a table.
Here is where I will begin my blog. I think you have a good background now of what is going on. I know there are other unfortunate people out there who are experiencing this. They probably don't even know what is wrong with them. If this can help one person I will be thrilled. Thank you for reading and please share your thoughts with me. Stay strong. Nancy

Thanks so much for sharing your experience. I had never heard of β-Cell Function After Weight-Loss Induced by Bariatric Surgery. However, you review prompted me to do some research. Your experience is valuable, continue to keep the RS community posted of your journey.