WPCNR HEARTBEAT. By Jack Lim as told to The CitizeNetReporter. November 11, 2008: Umpire Jack Lim found he had an incurable disease with perhaps three years to live by reading a handbook in a hospital waiting room:
I was in for a pulmonary function test at Phelps Memorial Hospital. There was a handbook on Pulmonary Fibrosis. That’s when I started to read about it. I said, Holy Mackeral, I got a lung disease where there’s no cure.
Jack Lim, the veteran county softball umpire is known on diamonds throughout the county and state, and a veteran with the 101st Airborne (1964-1965, paramedic) WPCNR introduced him to you to last week, when he walked the New York City Marathon, finishing it in 9 hours and 52 minutes to draw attention to the disease. He is the only person who has staged a fundraiser for pulmonary fibrosis, an incurable condition, who has staged the event while he is still living to promote awareness. Idiopathic Pulmonary Fibrosis is often overlooked due to its subtle signs attributed to being “a little out of shape.” He’s shown coming across the finish line wearing his Pulmonary Fibrosis Foundation Sweatshirt. Photo, Courtesy, the Lim Family
As Jack told me Sunday in a telephone interview from Florida he discovered he had the disease one year ago:
The crackling sound
It wasn’t until the end of August when I went to a routine exam and Dr. Michelle Duvalli out of the Hudson Valley Cardiology UNIT, heard a crackling sound through the stethoscope, like you hear when you have a sheet of looseleaf paper and you just crunch it up. I thought nothing of it. I said, OK, I didn’t know what it meant.
I figured it wasn’t anything they should be concerned about unless they thought it was my heart. She put me on latex, a water pill. I did a chest x-ray, an MRI and she could not come up with anything. The crackling sound was still there. I’m sure she had some ideas about some things.
I went back to my primary doctor. I thought, maybe there’s something they’re not telling me. I thought it was always my heart. My heart doctor assured me my heart was fine. I thought, holy mackerel, I might have cancer. I pressed him. He sent me to a pulmonary specialist about a year ago. I go to Dr. Alex Fijman. After a chest exam, he says, it looks like you’ve got idiopathic pulmonary fibrosis. We’re not 100% sure. I thought nothing of it.
The Handbook
He put me on steroids and we’re going to do a pulmonary function test at Phelps Memorial Hospital. In there (Phelps Hospital) there was a handbook on Pulmonary Fibrosis. That’s when I started to read about it. I said, Holy Mackeral, I got a lung disease there’s no cure.
After about a day and a half, I was kind of down on myself. It’s not the end of the world. I said, let’s see what he means by that, let me think about it.
I said to myself, I don’t have lung cancer. People with lung cancer, the quality of life generally is not good and they have generally between six and twelve months. ( I’m watching these people down at Phelps Memorial behind closed doors in a heavily oxygenated environment.) After some back and forth, the doctors stopped all my medication except for my blood pressure pills.
The News
I went back to the Hudson Valley Cardiology Unit, and I spoke to Dr. Duballi, told her I had idiopathic Pulmonary Fibrosis. She gave me a look, like Holy Mackeral, she knows something, or she’s not happy, something’s not right. I was trying to read in between the lines, but what I got out of it was that gee, I don’t have too much time.
Dr. Fijman decided to schedule a lung biopsy just to confirm that I have the disease. I went for a biopsy February, 2008 at Montifiore Hospital.
I spoke to the doctor, and it’s funny, all through this whole thing, I run into people who either are involved in softball, or seen me in softball and remember me when they were in high school. The lady who scheduled the appointment with me with the thoracic surgeons remembers me from doing her daughter’s game.
I get the operation (biopsy), and the next day they pull the drainage tubes out of me and one of the ladies, she’s a softball assistant. Two of them were working on me to get the tubes out and they have to do it a certain way, or else they have to get a thoracic surgeon to reinsert the tubes again. They did a good job. They pull it out by a string (attached to the tube).
The Final Word
The doctor from Ossining, New York, didn’t feel he had enough information. Since he’s not affiliated with Montifiore, I had to go back down there and pick up all the slides and specimens and everything else they had down there. He sent them to a pathologist in Syracuse and they confirm I had this disease.
I go back to him and ask him, all right, what are we going to do? He said, well, really there’s nothing they do. He said see me in six months. Basically what I got out of that, he’s going to monitor me. So, I said, let me see what I can do. I go on the internet, and I went to the Pulmonary Fibrosis Foundation.
I was asking what do I do if this disease gets really bad? What about a lung transplant? They said a lung transplant was out of the question because quality of life is not good, nobody lives that long on a lung transplant, three years tops. They don’t give you a lung transplant if you’re past 65 because they don’t want to give it to someone younger.
The Lim Legacy.
I got a phone call out of the blue from Dr. Fijman. He says they’re doing a clinical study, trying to find a cure for Idiopathic Pulmonary Fibrosis, and asked if I was interested in that. I says, Doc, I’m not doing anything right now. Of course I’m interested.
So I meet this lady Dr. Condos at New York University, I go down with my wife and we sit and we talk with her and she explains to me, you would be a good candidate. She’s a principle investigator. I figure she’s an elite person. So I said all right. They sent me out to Stony Brook University Hospital and I meet another principle investigator
Enter The Nebulizer.
Anyway they put me in this giant machine, it was something like out of the 1950s, a giant X-Ray, a big magnet or something like that. And what happens is, they give me this nebulizer, and they put this liquid in it and I breath the mist in. This nebulizer is expecially for the lungs.
I take it and they have this big screen and they see if it’s getting in my lungs and they like what they see and my body’s doing what it’s supposed to be doing and I’m off and running with this. They do a base test on my lungs where they knock you out and it’s sort of like a colonoscopy, but they’re going in on the other end (through the mouth).
They numb your throat and stick a tube down your throat and they go down there with all sorts of equipment with lights and cameras and all sorts of tools. They get about 10% of the solution (breathed in) back and that goes to another lab and they see what ingredients are in it. I feel kind of groggy coming out of it.
Enter The Bucket List
That brings me up to the point where I saw the movie, The Bucket List, I liked Jack Nicholson. I liked Morgan Freeman. What I decided was, you know something, after being down on myself for 36 hours, I said, you know, people are in worse shape in this world than I am.
Some of my buddies (in the 101st Airborne) never even made it past 18 and 19. You know, I’m not hat bad off. I still got quality of life. I don’t feel that badly except for shortness of breath, and that’s only when I’m going up a hill. I can’t jog, and I limit myself to two games.
So I made a bucket list of things to do. And one of them was to do the Marathon.
As I thought about it, maybe I can maximize this. Since it’s for me, maybe I can make it for somebody else. I thought of the idea let me promote the awareness of Idiopathic Pulmonary Fibrosis. That’s good, maybe it might spread.
So I come up with this idea. I talk it over with Rita Marsala and Jim Berger, (two umpire colleagues), and they gave me their approval. So I sent a message to people asking if they’d sponsor me (with a donation to the Pulmonary Fibrosis Foundation) and let the Fibrosis Foundation know.
They got all excited because usually when anybody does a fundraiser for the foundation, it’s generally for someone who has passed away. I looked at past fundraisers on their website to see if any was similar to mine, and every one that’s been done was for someone who had already died, a grandparent, a parent. I said, wow, this is a fundraiser in recognition of someone that’s alive…me.
About IPF
Idiopathic Pulminary Fibrosis involves the scarring of the lung. Gradually, the air sacs of the lungs become replaced by fibrotic (scar tissue). When the scar forms, the tissue becomes thicker causing an irreversible loss of the tissue’s ability to transfer oxygen into the bloodstream.
The symptoms include, shortness of breath (with exertion), chronic, dry, hacking cough, fatigue and weakness, discomfort in the chest, loss of appetite and rapid weight loss.
The causes according to the Pulmonary Fibrosis Foundation website, http://www.pulmonaryfibrosis.org, are inhaled environmental and occupational pollutants; cigarette smoking, diseases such as Scleroderma, Rheumatoid Arthritis, Lupus and Sarcoidosis; certain medications and therapeutic radition.
The complete handbook on the disease that Mr. Lim read in the doctor’s office is available on the website.
The “cracking” that Mr. Lim’s doctor heard through the stethoscope, is a key tip off. According to the handbook of the Foundation: The physician will hear crackles or Velcro-like sounds with the stethoscope. These sounds are opening sounds made by the small airways during inspiration. About 50% of patients with IPF may have clubbing of the fingertips. This is a widening of the fingertips due to a lack of oxygen in the bloodf. This is not specific to IPF and occurs in other lung disorders, heart disease and can also be present at birth.”
Next, Jack tells about his experience, pushing himself, despite his shortness of breath to complete the New York City Marathon.
Jack Lim fighting for truth, justice and the fastpitch way, behind the plate Sectional Championship, June 2007.
If you would like to support Jack’s effort to find a cure for IPF, drop any amount made out to Pulmonary Fibrosis Foundation to:
Ms. Lindsay Thiemkey
Pulminary Fribrosis Foundation
1332 North Halstead Street Suite 201
Chicago, IL 60622