Saturday, August 18, 2012

To Whom Shall I Go?

I recently had surgery for the first time at St. Lukes Roosevelt Hospital in Midtown. I must say, I have not had a surgery go this smoothly since seeing Dr. Mathisen in 2009. I've changed thoracic surgeons a couple of times, starting with Dr. Todd Weiser at Mt. Sinai Hospital. I saw him because he's worked under Mathisen who is the most knowledgable doctor concerning tracheal stenosis in my opinion. I would love to have him as my regular thoracic surgeon but he works out of Mass General! I needed to work with someone in New York, so I figured I'd go with Dr. Weiser. He gave me no hope of being trach free and he said it was a miracle that Dr. Mathisen got the t-tube in. Makes me real confident in him, right? Well, last year when I had my Mitrofanoff procedure, Dr. Weiser had to remove my original t-tube and put in a Shiley for anesthesia purposes. I thought he would put back the original tube, but no! He puts in a much smaller montgomery t-tube and swears it's the same size! I made an office visit with him to ask him what the deal was and what would be the plan to deal with my stenosis. He was very evasive and even got hostile when I queried him further. My father and case manager was even there to witness it. I knew he would not be helpful and decided that would be the last time I see Dr. Weiser. I looked for other Doctors with experience dealing with trachel stenosis but either they only worked with cancer patients, or they didn't accept my insurance. At my wits end, I called up NYP-Weil Cornell and told them my problem. They said Dr. Jeffrey Port was available and I made an appt. My mother went with me and I explained my situation with Dr. Weiser. Dr. Port had a plastic face and an unnatural tan but I needed someone to help me and he seemed confident that he could deal with my stenosis.

That started in 2011. I must have had about six bronchoscopy procedures with Dr. Port and there was always some screw up. His approach in the OR was pretty aggressive. I have never felt such pain in all the tracheal procedures I had! He was obviously phony whenever he spoke with me, and I rarely saw him before or after surgery. He was not proactive in treating inflamation, granulation tissue, etc. I even saw Dr. Mathisen again because I was really concerned. Mathisen temporarily put in a silicone based trach in for my poor trachea to heal. When I got back to New York, I developed a mucous plug that I needed emergency surgery to remove. Back to Dr. Port. He then gave me an ultimatum--to work with just him or not at all. I felt like I had no choice since I had no other Doctor in New York so I continued to see him and pray that God work through him to heal me. After two times of mis-positioning my tube so  I couldn't speak again for months, I set out to find another Doctor. Again, I came across Head and Neck Surgical group out of St. Lukes Roosevelt. They did not take my insurance, but I wrote anyway, telling them my problem with tracheal stenosis. A woman wrote back, I assumed the head secretary, and said Dr. Lebovics would be the best person to see. I did a search with his name AND tracheal stenosis and found a Wegener's Support Forum where several people testified of Dr. Lebovics' proficiency in the area.

I figured an office visit wouldn't hurt. If I got the same impression I had from Dr. Port, forget it. My dad went with me for moral support. Sure enough, the office did not accept my insurance, so I paid out of pocket, praying for the Lord to open doors. I then met the head secretary, Marisol Vargas, who was very pleasant and willing to help me get worker's comp to authorize payments. Dr. Lebovics was scheduled for surgery but he didn't want to turn me away. I filled him in on my history and showed him the latest endoscopy pictures. He was very personable and genuinely kind. If there's one thing I'm good at it's telling if people are for real or not. Long story short, this surgeon was the real deal.

Even though I've been in this kind of surgery many times, it is not easy. I hate the time it takes to travel, check in, etc. Getting an I.V. in me is a real pain. My veins are small and tend to "run away." This time, an anesthesiologist had to place it in a vein on my pinky! I only complied because she used a local anesthetic. But the worst part is not really knowing what kind of condition you will wake up in. What if   the tube doesn't work out? What if I end up worse than before?

You can definitely say I'm an anxious person. I think I've always been that way. But since the accident, it's reached a whole new level for obvious reasons. The last time I was in the hospital for an extended period was during my Mitrofanoff procedure last year. I was in the hospital for nine days and it was not pretty. Besides having an NG tube (reinserted multiple times), and a trach that needed constant suctioning, it was really difficult not being able to move in bed. I could not settle. My body started going through medication withdrawal. I had crazy nerve pain. Well, after two days this round, I was going stir crazy! The hospital beds are very hard to move around in and the rails are not conducive to quads. My meds were given at random times and my body didn't feel right. I started to shake uncontrollably and feel panicked.

It's easy to say, "be anxious for nothing..." but it's not very ministerial. One of the verses my dad and I looked at together was Proverbs 25:20. Vinegar makes nitre (soap) useless. So it is with people who say things like "you shouldn't be anxious," or "you just gotta have faith!" When you are ill, disabled or going through psychological trauma, it's very hard to focus and no one can try to 'reason' you out of what your going through. What helped me is knowing that my feelings may change, but God doesn't. And what I love about scripture is that it's honest about human nature. Even John the Baptizer, a man who was born to usher in the Messiah, had doubts when in prison. "Are you the one to come, or do we wait for another?"What did he go through in that prison? Did he have the feeling he would soon be beheaded? Did he feel a sense of injustice toward God? I'll be sure to ask him in eternity!

There are many times that when discouraged, I could have said screw this God business! But like Peter, I find myself saying: "Lord, to whom shall I go? You have the words of eternal life!" (John 6:68). Many disciples stopped following Jesus because they were offended at what he said, or they didn't agree with the cost of discipleship. Like Peter, I have come to believe and know that Jesus is the unique son of God, the man God has appointed to save us because we can't save ourselves.