It’s been almost a year since I’ve written here, and it feels like so much yet so little time has passed. I’ve been through quite the health journey over the last year.
In May of 2021 my gallbladder became infected, resulting in emergent surgery to remove it, which had complications and was a rough road. Since then, I’ve been periodically battling illnesses, including depression and anxiety. I gained quite a bit of weight, and just felt like it was one thing after another with me.
In early June of this year (2022), Jon mentioned to me that he’d noticed me getting progressively sicker. It had started to get to the point where I was unable to function normally. He brought up that he thought maybe my gallbladder removal had something to do with it, and I agreed that this was a good possibility.
I quickly decided to change my diet to a more “liver healthy” diet to see if it improved how I was feeling. I gave up alcohol, red meat, dairy, and I focused on eating low fat and low sugar. Despite these changes, I continued to get worse. I consulted with some people I know who I trust to discuss nutrition, and I also eliminated nuts because they can be hard to digest. I was eating a lot of salads, raw vegetables, beans, lentils, and other high fiber foods.
What I didn’t know was that it had nothing to do with my liver, and those things were actually why I was getting worse. The changes I’d made to my diet had warded off a very ugly disease that was brewing, but the high fiber foods were making it worse.
After making the changes in early June, I quickly noticed my ability to eat food drastically went down. I was only able to eat very small meals, basically only a few bites at a time. Since I’m fairly well-versed in nutrition it didn’t take me long to realize I was not getting in enough calories to sustain myself, but I had lost my appetite and wasn’t able to eat much at all. By the end of June I was eating roughly 700 calories per day. I had lost 25 lbs in less than a month. I made a doctor’s appointment for the afternoon of July 6th.
On the 4th of July I felt ok throughout most of the day, and was able to graze on some food, but I got sick that evening. The following day I was unable to eat anything. On the morning of July 6 I was able to eat a bowl of oatmeal, but as the morning went on I felt more and more nauseous. By lunchtime I had become violently ill. Hours had passed and it continuously got worse. I called Cameron, Jon, and even my mom for help with the little strength I had. Luckily I had done that, because by the time they all made it to me I had started to become unconscious. I remember almost none of the next few events.
From what I’ve been told, I was going in and out of consciousness and responsiveness despite continuing to get sick. The decision was made to take me to the hospital instead of the doctor (obviously), but I couldn’t stay conscious or stop getting sick enough to get out of bed. Jon & my mom made the decision to call 911, the paramedics came and got me safely out of my house, and I got my first ever personal escort to the hospital in an ambulance (yay me – not). I only remember one minute sitting on my bed with my head in a trash can saying I needed to go to the hospital, and the next being in an ambulance with a paramedic who was repeating that his name was Max and we were headed to the hospital.
In the ER they ran a variety of tests, including blood work and a CT scan. My CT was normal, but my blood work showed severe dehydration and low sodium. Meanwhile, my nausea was not under control, and they admitted me with a predicted 2-3 day stay while they tried to get to the bottom of what was making me so sick.
Despite the IV fluids, my hydration and sodium numbers weren’t making much improvement. The initial suspicion that I still had gallstones or another bile leak (from my gallbladder removal) were proven false by 2 procedures. My nausea was barely managed by medication, so the decision was made to do a gastric-emptying study, which tests how well your intestines function as your stomach ingests food. It was a horrid experience and I felt SO sick, but I made it through the test for a determination. I had failed the study, and was diagnosed with Gastroparesis. Finally we had at least 1 answer.
I was put on a new medication call Reglan, which made me nervous because it is a black box drug and is only supposed to be taken short-term, but it did seem to help me with my nausea and digestion. I was also sent in a dietician to go over my new diet, which has been so hard for me to work with. I’ll probably have to write a separate post just on the new diet. The biggest thing I learned is that I cannot eat raw veggies or high fiber foods.
Despite some improvement, however, my sodium levels were not rising, and eventually they became critically low. This is called SIADH/Hyponatremia. My body was retaining the IV fluids and releasing the salt instead of the other way around. The decision was made to discontinue my IV fluids as well as a medication I was on that could be causing the issue, and to try a very risky medication to get my sodium levels back up. It worked, and I lost 6 lbs of water weight in less than 12 hours. I have now lost over 30 lbs in less than 8 weeks.
By that point I had spent 10 days in the hospital trying to figure everything out. Most of that time I was disoriented, confused, unsteady on my feet, and exhausted. They continued to run my blood work for another 2 days, and decided that I had improved enough to go home if I felt I was ready. They gave me the option to stay 1 more day if I felt I wasn’t steady enough yet, but I have a good support system at home and I wanted to be home and in my own bed.
It has now been roughly 8 weeks since I started to get sick, 4 weeks (to the day) since I went into the hospital, and about 12 days since I’ve been home. The first week, especially the first few days, at home were really rough. I don’t know why, but it was almost like leaving the hospital felt like someone should’ve waved a magic wand to make me better, and it just wasn’t the case. I remained unsteady and easily exhausted.
This past weekend I attended my aunt & uncle’s 50th wedding anniversary celebration roughly 5 hours from home. I was nervous to go, but they are such an important part of my life, and I hadn’t seen them since 2019 thanks to COVID and other factors. So I decided to do my absolute best to make it there. I did, and it was just what the doctor ordered. I had a wonderful weekend where I started to feel like an actual human again! I couldn’t have asked for a better weekend.
I was feeling so well that on Monday night we decided to go out for a date night and have a belated celebration for Jon’s birthday (10 days late), and I ate outside of my diet. I should not have done that, and I spent yesterday (Tuesday) feeling terrible the whole day. It’s now Wednesday, and I still don’t feel quite right. I still have very little appetite, and I obviously have to stick to the Gastroparesis diet or I will get sick. It’s been a tough battle physically, mentally, and emotionally, but I do feel like this past weekend gave me some hope that I am on the road to recovery and things will continue to improve over time.
I have continued doctor’s appointments coming up, so we will see what decisions are made from here on out, and I just keep hanging on to hope that it’ll all go uphill from here. If I’ve learned one thing from this it’s to not sweat the small stuff, and to take things one day (or even one hour) at a time.
I can’t thank our “village” enough for stepping up to help us during this time. Our families jumped in to help out with the kids, family & friends sent us prayers and well wishes, and they’ve also provided us with meals and gift cards, which we are still continuing to use to help support us during this time. The hardest part about keeping the family running at home has been the meals, so I cannot tell you how much I truly appreciate the support!
More updates to come, as my estimated recovery is 10-12 weeks in a best case scenario. Thanks again for all of your support and well wishes!
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