Walking In My Shoes: Living WITH FALS ( Episode 4 )

Come and embark on an emotional journey for answers. In this six-part series. You will read about the struggles that many PALS face in the pursuit of a diagnosis. ( Episode 4 )

Blog Post 4: The Good Doctor

Some time has passed since I was diagnosed. My wife heard about a great doctor who works with PALS (people with ALS), so she made an appointment for me with my new doctor, Dr. John R. Bach. I had looked him up and read that he is a professor of neurological diseases. After that mess with my last neurologist, my wife had found a big-time hitter. Dr. Bach was well-known in the ALS community for his work and studies on neurological diseases. I recall the day I had to see the Social Security doctor. She had asked me if I had gotten a second opinion. I said, "Yes, from Dr. John Bach." She repeated his name, and I replied, "Yes." All she said was, "Tell him 'Hi' from me, you're approved."

Meeting Dr. Bach was a great honor. He was very different from any other doctor I have ever met. He was the most compassionate person I’ve encountered while dealing with ALS. He's an old-school doctor, not too many of them left. Dr. Bach even owns an original Motorola Razor cell phone from the '90s. He didn’t like too much technology. He has written several books on ALS, and he specializes in lung function and NVS (Non-invasive Ventilatory Support) systems. He travels throughout the world, teaching about these systems and the negative impact of having a trach.

The first time I had to use an NVS system, it was to save my life. I had gone in for what doctors called a simple procedure. I needed a feeding tube because, due to ALS, I could no longer eat food. I was living on drinking Muscle Milk four times a day. I did this for about six months and lost a hundred pounds. I was in the surgical room waiting for my procedure when one of the doctors sprayed something into my mouth. As soon as he did this, my throat locked up, and I couldn’t breathe. I tried so hard to communicate with the doctors, but I had lost the ability to speak about a year prior.

I passed out, and when I woke up, I couldn’t breathe. The doctors almost killed me. Only God knows what happened in that surgical room. The doctors had failed to give me medication to stop my saliva, so for the whole procedure, my lungs filled up with my saliva. The hospital quickly called Dr. Bach and told him what had happened. He had us schedule the procedure at his hospital, which was right next door to his office. He arrived within minutes to save my life and quickly ordered the NVS system to help me breathe. My wife explained to us that one of the doctors came over.

He was asking my wife if I suffered from seizures. She quickly replied to the doctor. "No" So, just imagine what they did to me. What was supposed to be a simple procedure turned into a nightmare. I was supposed to stay overnight to make sure the feeding tube was fine. After the doctors almost killed me, my overnight visit turned into a two-month stay in the ICU. I was so bad that my parents flew in from Florida to say their goodbyes. Some of my family came to see me and also said their goodbyes. One of my cousins asked me if I was ready to go with Jesus. I’m a Christian man, but I wasn’t ready to die.

I had no speech device at the time, so I couldn’t communicate. I'm blessed to have my wonderful wife. She has been by my side throughout everything I am going through. For a huge part of my hospital stay, my wife slept in a regular chair. One day, I was given a new nurse, and once she saw the state of my wife, she ordered a folding chair bed for her. It was incredible—how come no one else cared about my wife like that? Dr. Bach would come by and give me hope. He said, “Juan, you look bad, but you were worse before the NVS system.” He told me to hang in there and fight, that it wasn’t my time yet. It was good to hear because most of my family had already put me into the ground.

By the grace of God, I made it out of the hospital. Only a couple of cousins and my parents believed I could make it. We don’t have a support group for this. Only two cousins and one of my brothers keep in touch with us. I didn’t just lose the ability to move—I lost all my friends and extended family, except for the few I mentioned and one good friend. I don’t know if other PALS go through this with their families and friends. It’s just my wife, myself, and our daughter through all of this. I even lost my 24-year-old son, and after being sick, we don’t speak much.

The second time Dr. Bach helped save my life, my wife stayed on top of everything with my care. One day, she noticed my face was whiter than normal. She grabbed the Pulse Oximeter reader to check my oxygen levels. It read 91%, and at the time, we didn’t know that it was very bad. She called Dr. Bach and told him what was going on. He told her to rush me to the hospital and said, “Something is very wrong with Juan. His oxygen in his blood can’t drop under 95%, so get here now.” We did what was asked of us and got to him. He was already outside waiting for us. He came on his personal time; it was very late at night.

I had pneumonia and five other infections running through my body—six infections—and I didn’t feel sick. That changed a few days after arriving there. I got so sick that the doctors told me I wouldn’t make it out of the hospital. They had no clue who they were speaking to. At the time, we didn’t know that the doctors had given me so many different types of antibiotics that they had damaged my kidneys. On top of the six infections, my kidneys were at only 40% functionality. The chips were stacked heavily against me during this hospital stay. My wife told me not to worry, that everything would be fine. "Man" my wife can see rainbows in pure darkness.

I took a turn for the worse with my lung infection. I had so much trouble breathing, but it was different this time. I had a Tobii Dynavox PC to communicate with, and I was able to tell the doctors everything I was going through. I’m not going to go through everything that happened—it would take too long, as I was there for a whole month. Dr. Bach came many times while I was there. The whole time, my wife was back to sleeping in a regular chair. I was able to speak and asked for a bed chair for her. It took them weeks before they found one for her. She did not give up on me with her prayers.

I died twice in the hospital during this stay. When it first happened, I had an out-of-body experience. I had never experienced something like this before. I saw myself floating above my body. My wife kept calling my name, “Juan, wake up, you can’t leave me!” I heard her say this over and over again. I was awakened to my wife’s beautiful smile. I told her about this weird dream I had, seeing us, and that she kept calling for me. She looked at me and told me, “No, it wasn’t a dream you had. Honey, I was really calling your name.” I asked her what happened to me. She told me I had stopped breathing.

Once again, the grace of God saved my life. The whole time I was in the hospital, we did not stop praying. I know many people don’t believe in God—most of them are doctors and people in the field of science. By the last week in the hospital, I had so many doctors pay me a visit. Most of them were calling me a miracle because I survived. I did not only survive; I regained full kidney function. Doctors could not believe how I recovered from six infections and massive kidney damage. I simply said one word: “God.” I was at University Hospital in Newark, NJ, which is a teaching hospital, so my recovery brought many doctors and their students to witness me.

( Episode 5 Will Post Next Sunday )