Moving back to the United

States to find a treatment…

In an unfortunate series of events I went back to Nigeria, to pack our house to move back to the United States and contracted a bacterial infection. 

The doctor in Nigeria prescribed a very heavy, broad spectrum antibiotic to clear the infection.  Expecting the antibiotics would knock out the infection, I decided I would travel to South Africa to visit my in-laws and say my final goodbyes before departing to the United States. I was in pretty bad shape by the time I made it to South Africa. I had a high fever, brain fog and it felt like I had the flu. Even though my symptoms were progressively getting worse, I continued taking the antibiotics thinking they needed more time to kick in. After no sign of improvement, I had to be seen at an emergency room in South Africa where they ran cultures. Two days later, I found that I had a picked up a highly resistant bacterial superbug.  The antibiotics I had been taking weren’t even touching the infection.

 The cultures revealed there were only four known antibiotics that this type of bacteria wasn’t resistant to.  Unfortunately each of these antibiotics metabolized in the kidney making treatment very dangerous for my one puny kidney that was already hanging on for it’s life. 

The South African hospital gave me a medication that stopped the bacteria from multiplying, but it didn’t get rid of the infection. That medication reduced my symptoms dramatically where I was able to function almost completely normal and I was able to finish my move back to the United States.  I felt like I was getting better.

 I had been back in Houston for a couple weeks when I started feeling bad again. I went to a 24-hour emergency room clinic, but after several series of tests, they couldn’t find anything wrong with me.  They sent me home with a different broad spectrum antibiotic and huge medical bill.  I felt defeated and my brain fog had gotten much worse. I had so many questions with no answers.  How was it possible to feel so bad, but no one could find what was wrong with me? How much were all those tests going to cost me, and would my insurance cover any of it?  

Within a week’s period of time my health started deteriorating so quickly that I had to return to the Emergency Room where I was immediately admitted into the hospital.  My body was in sepsis and my organs were beginning to fail. The medication that I had gotten in South Africa had been acting like a dam, holding the floodgates of death closed. When that medication ran its course, I was sicker than I had ever been!  

 The hospital began running a whole new series of new tests- cultures, x-rays, CT scans, blood work and as a standard hospital precaution I was put on another round of antibiotics. After three days of being in the hospital, my health was still declining. The cultures finally came back and were identified the same resistant superbug bacteria that had been identified in South Africa.

Quarantined.

I was quarantined into the infectious disease section of the hospital where the doctors were wearing hazmat suits to visit me. Even though my nephrologist had no experience on my disease, she continued working very closely with the team of specialist in the hospital to try and figure out which one of these three medications would do the least damage to my remaining kidney. 

 I felt like I was in a game of Russian Roulette, but with an extra bullet in the gun; a dangerous superbug that needed treatment, and a failing kidney that would suffer from the superbug treatment. My life was being held at gunpoint, and I was fairly certain that I was going to die in that hospital room with my last human contact being through latex gloves. The odds were not in my favor.   

After two days of being administered the antibiotics to treat the superbug, I slowly started showing signs of improvement. Luckily, my kidney was remaining stable. My team of doctors said that it was possible I continue the IV antibiotics at home if I had an IV PICC line surgically inserted into my arm. 

Things were starting to look up and I thought I had dodged the proverbial bullet.  I remember feeling excited by the possibility of getting the PICC line installed in my arm because that meant I would be able to go home soon, AND I would get to leave my room. The thought of seeing actual humans that weren’t wearing hazmat suits was exciting. Did I mention that I’m deathly afraid of needles? So, you must know how ready I was to leave the hospital if I was excited about having a one inserted in my arm 24/7.

Orange is N OT the new pink!

 Neon orange hospital bracelets were put on each of my wrists to notify the staff that I had an infectious disease. In a wheelchair, I began my journey down to the surgery room. The friendly faces I had hoped to see along the way immediately spotted my orange bracelets and took cautionary steps away from me.  Feeling like a social pariah, I became very anxious as I waited.

During the procedure, my anxiousness continued to get worse and tears were silently streaming down my face.  I turned my head away from the arm the doctors were shoving their instruments into.  I couldn’t bear to see what they were doing. Then oddly, I remember with clear distinction, the left side of my face, jaw, and left arm (the opposite arm they were installing the PICC line) had gone uncomfortably numb while they finished the procedure. As my doctor casually made a joke about my new arm jewelry, my heart rate monitor began alarming. Just like an episode of Grey’s Anatomy during a code blue, a team of doctors burst in the door in a matter of seconds.  The bacteria had reached my heart.  I was not going home that day.  

 A cardiologist was added to my team of doctors and my hospital stay was extended with more days for observation. My body was slowly but positively responding to the IV antibiotics. I was weak and tired of fighting. All I wanted was to go home and die in peace without hearing the constant beeping that surrounded my hospital bed. I was ready to quit at life.

Finally, I was released from the hospital and sent home to continue the IV antibiotics through the alien tubes dangling out of on my arm. Even though I was ready to give up on myself, my sweet husband was not. For the next 50 days like clockwork, he administered IV antibiotics in my PICC line-two times a day and flushed the lines. I was frail, I couldn’t hold my hands up long enough to wash or brush my own hair. He had to help me with almost every aspect of caring for myself. My husband became my full time caregiver/nurse while he continued to working a full time job. I don’t know how he did it. He was strong and patient every step of the way.

A nurse named Betty would come to our house and help me two times a week, changing the bandages and sterilize the line. Every 4 days, I had to be driven to the lab to have blood work taken and new cultures ran until the Infectious Disease Doctor approved to have the PICC line removed. 

Even when the PICC line was finally out of my arm, I was still incredibly weak and had to build up strength in my entire body. My husband started taking me on embarrassingly short walks, I could barely make it to the end of the driveway. After walking a few steps, I would have to stop and hold his arm while I caught my breath. Secretly worried this was how I was going to be for the rest of my life, I tried being overly optimistic. My mindset was I just had to ignore the red flags my body was sending me and push through until I got stronger. I would try to walk a little further each day my body was cooperating. One day, I started off strong and went further than I should have. I ended up clenching onto a stop sign while my husband ran home (1 block away) and got the car to come pick me up. I learned an important lesson that day. I learned how important it is to listen to your body and don’t ignore the red flags your body is sending you.

Searching for help…

Once I had the superbug situation behind me, I decided I was going to try and find a nephrologist who had experience with my kidney disease, but there were none. No one had heard of this. Desperately, I reached out to anyone who had any contact to the medical world to see if they knew someone, anyone, that could help. It ended up being a friend, of a friend, of a friend kind of situation that helped me get an appointment with the chief of nephrology at the best hospital in Houston.

He took a special interest in the uniqueness of my case and accepted me as a patient. Consulting with the physician from the University of Columbia who had published the medical journals from my Google search, they decided chemo and immune suppressing treatments was a last resort and we weren’t there yet. For now, they decided I should take a more conservative approach through several medications while they gathered more information and began trying to understand how rapidly the protein was reproducing. This meant more tests and blood work. For the next several months, I was a regular in the blood labs and in a new specialists office. I followed their instructions religiously, took my medications as directed, but my numbers did not get better. 

One day while scrolling through social media, I came across an advertisement by Dr. Steven Gundry for the Plant Paradox Diet.  It boasted about this miraculous, lectin free diet that healed autoimmune diseases.  When you are desperate, you’ll try anything, even a doctor that you found on social media. I immediately bought the book and read it cover to cover. I mean, come on, isn’t that the point of any well written infomercial? Hook you with cleverly thought-out sales pitch of optimistic hopes and dreams of a better life.

A little confession about me: I’m a sucker for anything with the “As Seen On TV” sticker.

We all want out lives to be easier so why not try this “new miracle product for 5 easy payments of $19.99”. Yep, I’m the person that keeps those companies in business. Some of the products worked but most of the time it’s an overpriced gimmick that I wasted my money on, BUT if it would have worked, it would have been worth it! So, I’m actually not surprised that I was willing to try an “As Seen On Facebook” diet.

On my next visit to my nephrologist, we discussed his thoughts on a diet like this. To my surprise he said: “It can’t hurt, let’s give it a try and see what the numbers look like.” Back to the lab to have more tests, I remained a human pin cushion that was afraid of needles. However, I felt like this could all be worth it if Dr. Gundry’s program actually works.

Excited to start my new “As Seen On Facebook” life, I started with cleaning out my pantry and filling my refrigerator with fresh organic leafy veggies. I printed out Yes/No list and carried that with me everywhere. I followed every bit of information I could find from Dr. Gundry. I listened to his podcasts and watched all his videos on YouTube. After all… my life depended on this diet working! I made it through phase 1 of the 3-day cleanse. I thought I was going to die on day 3 but lived to tell the tale. On to phase 2, where the magic happens. Full disclosure, this was not all rainbows and butterflies, I did have a few random spells of nasty nausea and leg cramps in the first couple weeks, but beyond that, I started feeling better. My cravings for crappy, sugary, and non-nutritious foods went away. I started craving salads. I was losing weight, my skin became clear, my digestion was predictable, and my brain fog started lifting. I could not believe how much better I was feeling, BUT I still was curious to see if my labs were going to reflected how I was feeling.

It was time to test again. To my doctor’s surprise, Dr. Gundry’s lectin free diet was working. I was getting healthier. I was starting to feel better, and my labs were proof that this lifestyle change was working. Gradually over a 6-month period of time (under the guidance and supervision of my doctor) I was able to stop ALL the medications I was taking except one.  No Chemo. No immunotherapy. Now, I have been following the lectin free diet for 2 years. My nephrology appointments have become less frequent and I continue feeling better than I’ve felt in years. Proud to say that at my last appointment my doctor said my kidney was functioning right below what a normal kidney does.