Yale’s Medical Recovery

In January of 2022, I reached some major health milestones after many years of chronic illness and felt very good about my health. This changed quickly this year, in February of 2022. After many years of managing my chronic health condition successfully and seeing improvement, I had a severe flare-up. Usually, these flare-ups correct themselves with diet and supportive care at home, but from February to May of 2022, things got very bad.

 

I continued pushing through, but by March, I had lost 15 pounds and could eat less and less. By the time of my hospitalization on May 22, I had lost between 35-40 lbs weighing in at under 100lbs.

 

I tried to go to the ER 5 times between February 2022 and May 2022. It was not until the 5th, when I presented severe weight loss, seizures and body tremors, disorientation, and extreme malnourishment, that my complaints were taken seriously. The specialists I had been seeing for care also chose not to take these complaints seriously and made no effort to admit me to the hospital, even at my request. This happened despite many calls and updates on my situation.

 

Here’s what we know:

My condition is complicated and not straightforward. My body is not tolerating food, and hydration is difficult. There is not yet any clear diagnosis, which will take some time with specialist care and likely time at research hospitals.

 

Here’s where treatment is:

I am currently on what’s called a J tube. After surgery, my success on this tube has been limited. I have not yet been able to feed successfully on the J tube to gain or maintain weight. I require IV fluids to prevent relapse into dangerous dehydration and electrolyte imbalance. I am using a cane for severe weakness and mobility but have seen improved cognitive function due to restored electrolyte balance and rehydration.

 

 

Here’s why I need help:

Returning to work is not an option right now. Health must become my #1 priority. I need to restore my body and get answers at specialty clinics. We will need to pay bills, pay for transportation, and allow me to take time off work, likely for a few months or more.

Getting out of the hospital by reversing severe malnutrition is the first step. The next step is being able to gain weight and strength back, but since I’m not responding well to the interventions, this is taking longer than with straightforward cases. I don’t anticipate being well enough to return to everyday life for a while, and my body is severely affected by long-term malnutrition. My family and I can use as much help as possible to make it through the time it takes me to recover. When I recover, I don’t know what permanent effects or changes I will need to make for my health, but I expect things will need to be very different for a long time to focus on my health needs.

 

If there's anything you can do to help me in my journey back to health and well-being I would be beyond grateful. This has been very difficult and I find it hard to ask for help, but I am trying to prepare for the realities of what it will take to get back to where I need to be. We are so lucky to be surrounded by many amazing people, and we appreciate your support so far.