"You aren't going to die from your lung disease"

As we spoke, he began asking questions... How was I sleeping, was I confused first thing in the morning, did I snore. Questions that didn't really seem directly related to Alpha-1, but being new to the game, I wasn't really sure.

Once we had asked all of the questions that we could think of, and he patiently and happily answered every one, he gave us his prognosis. As long as I continued to follow up with him, and as long as I avoided irritants (smoke, workplace chemicals, etc...) than he was extremely confident in this:

"You aren't going to die from your lung disease"

It took a moment for the news to digest. I knew that my major symptoms were from the liver, but after seeing all of the lung information, I was certainly unsure of how this would play out. His news, however, did come with one caveat: Although I had come to see him about the Alpha-1, he was always trained to spot symptoms of any other issues that he could address and heal. He did highly suspect Sleep Apnea, in my case (hence the "strange" questions that he had asked). He scheduled me for a sleep study, where his suspicions were proven correct. A small hiccup in the healing process, compared to what I had feared.

I have continued to see this Doctor for the last two years, and would HIGHLY recommend him to anyone in the area who needs a pulmonary Doctor, or even a second opinion. I recently heard him speak at an Alpha-1 Education day, and, even after doing two years of research on Alpha-1, he still managed to impress me with his knowledge and presentation skills, as well has his pure humanity. If anyone needs his information, please just contact me!

Finally. A positive experience!

I can still see, in my mind's eye, exactly what I expected. An older male, probably a charter member of the "good old boys network". He would walk in the room, review my file, make his determination as to my condition, and answer only as many questions as he was forced to sit through before leaving to see the next patient.

And then, the door opened, and in walked the Doctor. I could hardly believe what I was seeing... A young man, about as far from the "old boys network" as I could imagine. He closed the door, gave my wife and I a warm smile and a firm handshake, and began to speak with us. Not "to" us, or "at" us, but truly speak with us.

Suddenly, this wasn't "one of the Deans at the Med School" or "the prolific researcher and publisher". He sat down, and asked how I was doing and what brought me there, even though he had already taken the time to review my file. He was truly the neighbor and friend that you would trust, even with your very life.

The physicians that could determine my fate -- How do I choose?

So, I then began the work of trying to decide on a hepatologist and a pulmonary Doctor. My first meeting was with the lung doctor, and I was in for a tremendous surprise!

I had done the research, and, given that I did not have any personal referrals to either specialist, I chose by reviewing each Doctor's online profile on the University website. One lung Doctor in particular stood out, as he had significant research work, and he also had achieved a prominent role within the University system -- Among other titles, he was serving as one of the Deans of admission for the U-M Medical School.

I scheduled the appointment, and my wife and I showed up at the lung clinic. After a long series of tests, I had my results in hand and was ready to see the Doctor. And at almost exactly the appointed time (not 20-30 minutes late, like most every other Doctor I had ever seen), the examination room door opened. I was terrified... How do you introduce yourself to one of the people who could determine your fate, and perhaps those of your wife, children, friends, family, business associates and others. I could only stand there and wait, and hope that I had chosen wisely...

And thus began the REAL search.

I soon received a call from my primary care Doctor. Clearly, he had done some basic research, but still was set on the opinion that Alpha-1 could not be the true cause of my liver issues. Again, lose some weight and things will be better. If it wasn't, than perhpas a transplant was in my future. No real way of telling anything.

And oh... By the way. The blood work showed that I was a ZZ. "What in the world is that?" I asked myself. But I knew better than to really pursue it. As good and caring of a person as he was, I could tell that he, as a Doctor, was in over his head on this one.

So off I went on my quest to find specialists that knew more about this disease, and that could help me manage the symptoms, and perhaps have a bit of control over the eventual course of the disease. I soon discovered that there were two local hospitals that had staff with the knowledge to understand the disease, the experience from having dealt with other patients with it, and the capability to carry the treatment through to the conclusion, if necessary... A liver transplant. It was down to Henry Ford Hospital and the University of Michigan.

In my searching, I couldn't find any real benefits or flaws that would allow me to easily choose one of the programs. They both seemed to have updated facilities in their transplant areas, extremely competent staff, and produces similar outcomes for their patients. Although it isn't the best means to choosing a hospital, since all other items appeared equal, I chose U-M -- First, because the campus is located in Ann Arbor (a much safer area than Henry Ford, which is in the New Center area of the city of Detroit). Secondly, and on a much lesser level, because I got my undergraduate degree there, knew the town, and loved the area.

Alpha what????

It was at that moment that the internet temporarily became both my best friend and worst enemy with regard to the disease. For every helpful post or article that I would find, there seemed to be at least 3-4 written by people who appeared well intentioned, but, in retrospect, knew little or nothing about the topic. I'm not sure which was more distressing... Finding out that I had this mysterious disease, or not being able to trust most of the information that I was discovering about it.

The single, most frustrating part, from my viewpoint, was the fact that nearly all of the information that I found discussed the disease as only a lung disease. Knowing that I had little to no lung symptoms, I couldn't understand how this could possibly be the cause of my cirrhosis. As one educated hepatologist said to me months and months later, while I sat in an emergency room, "Guess you didn't read the textbook, huh?" To this day, that is probably the most succinct, heartfelt, and honest explanation of my symptoms that I have heard. Thank you, Dr. Silverman.