‘Invisible’ Lung Disease Called A Death Sentence By Doctors

NORTH TEXAS (CBSDFW.COM) – Have you ever heard of Idiopathic Pulmonary Fibrosis? Probably not. But every year it kills just as many people as breast cancer.

But there are no marches, no ribbons, not even much research for Pulmonary Fibrosis.  There is no cure.

A Plano man hopes to change that by talking about his own diagnosis in the time he has left.

Bill Vick looks pretty healthy.  “I was fit,” the 73-year-old said.  “I was training for my first triathlon. I was an age group competitive swimmer. I was a runner. I was fit. I never did smoke. I never did drugs. I had a great healthy life. I did every thing right.”

Then, he cleared his throat.  “Excuse me, part of what I have,” he said.

“One day, swimming, I ran a little short of breath,” he continued.

“So, I went to my doctor and said, ‘Hey, I’m having a problem here. I’m coughing,” he said.

The doctor thought it might be asthma or COPD, and gave Vick an inhaler. But it didn’t help.

In September, he went to lung specialist, who diagnosed Vick with a lung disease he’d never even heard of.

“Idiopathic Pulmonary Fibrosis. I said ‘what’s that?’ He said, ‘that’s a death sentence.'”

“The median survival may be three to five years,” explains Dr. Timothy Chappell.

Dr. Chappell hasn’t treated Bill Vick, but he has treated others with Vick’s condition.  “The most delicate imaginable sponge you have is the lung. It scars. It stiffens and that causes the symptoms that patients have which is usually, just, breathlessness.”

Dr. Chappell said, the best hope for people with Pulmonary Fibrosis is a lung transplant.

Vick is walking less, but talking more about the disease.  “I call it a Ninja disease. Because it’s kind of invisible and people don’t know about it. They don’t see it. But when it strikes you, it’s a killer.”

It’s strikes most over 50. But nobody even knows what causes it.

“This year, there will be probably 40,000 people that die from breast cancer – a terrible disease there will be over 40,000 people that die from pulmonary fibrosis.

Vick, who’s social media savvy, hopes awareness sparks research. Because he knows no one would want to walk in his shoes.

“I want to be an advocate. I want to raise awareness,” he said.

Bill Vick says his symptoms started with a persistent cough that didn’t go away after three months. He urges people to see a specialist if they experience that too.

“I didn’t know, if you have a persistent cough for two or three months, you don’t need an X-ray, you need a high resolution CT scan,” he said.

“If you have GERDs (Gastroesophageal Reflux Disease or Acid Reflux) and a cough and you take statins, you’re kind of crossing that threshold of better odds against than for,” Vick said.

Statins are medications to control cholesterol.  Vick had been taking statins and medication for GERDS.

He went on the Paleo diet and stopped eating milk and wheat products. Since then, he hasn’t had to take any medication for acid reflux or cholesterol.

He knows he won’t be able to stop the Pulmonary Fibrosis. But he refuses to let the disease define him.

“I think I’m living with Pulmonary Fibrosis. I’m not dying of Pulmonary Fibrosis,” he said.

He pointed to pictures of his family and said, “This is what matters the most right here.”

Get more information from the Pulmonary Fibrosis Foundation.

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One Comment

  1. Vickie Osier says:

    I would like you to send me the name of the man that has idiopathic pulmonary fibrosis. We moved to Texas in Sept. of 07 from California. My husband was healthy and when we drove here wwe thought it had a cold. He went into Baylor in Grapevine and was diagnosed with the same disease. We were of course shocked as well as there is no cure. He was on oxygen and we tried to keep going everyday. he loved to see our grandson play baseball. he passed away March 23, 2011. I would like to contact your person who was on the tv tonight just to let him know I am there to answer any questions if he has any. We would have been married 50 yrs this year and Bernie that was his name was so active. He would demo boats out in the water in California (that is where we lived) and rode motorcycles, snowskiied-jetski-we did it all It was a total shock for both of us. thank you for bringing that disease to the public. I tried but got no where.

    1. Sandy sessoms says:

      My father has thyroid cancer. He had a 5 cm tumor removed and had to have a trach put in. But in nov he had a ct scan done and it says that he has compressive atelectasis and pleural-parenchymal scarring at lung apices with honeycomb like appearance. And everything i read about honeycombing states that it has to do with IPF. My dad has not been diagnosed with this disease. But it sounds like this is what he has. He also has copd, lymphadenopathy, diabetes. He coughs alot due to the trach and is short of breath. And is coughing up blood more often 4 days this month so far . The doctors do not seemed concerned about the coughing up of the blood. They just say it is irritation. Does anybody know if these are the signs of IPF?

    2. Falk says:

      Hi, I am 72, fit and mobile, love to drive and be outdoors – but when i told my primary physician that I have shortness of breath upon short spurts of doing things jn the garage or around the house she sent me to every conceivable consultant including my cardiologist and a Pulmonary Specialist. He said, following multiple scans, that I have IPF – he showed my wife and myself the inside lining of the lung was thickened anywhere from 1/32″ to 1/8″ all around the perimeter. He will take a biopsy next week following some Lung Capacity tests – and put me on N-A-C 600mg tid and O2 during night at 2lt – any words of wisdom, consultation and advise for me.

  2. Kathy says:

    I am so disappointed that lung transplants were not mentioned in this story of pulmonary fibrosis. It was the perfect opportunity to emphasize the need for organ donations. My husband HAD (doesn’t anymore) pulmonary fibrosis but received lung donations in September and is doing very well. He is looking forward to many years of good health.

    1. Mike says:

      Kathy – read more carefully L.T. WAS mentioned, 13th para. down..

      Dr. Chappell said, the best hope for people with Pulmonary Fibrosis is a lung transplant.

    2. Kim McLaughlin says:

      It was so nice to hear that your husband is doing so well with the lung transplant. I am a 58 yr old female with pulmonary fibrosis. I would love to be able to talk to you, or your husband. My pulmonary fibrosis stems from Lupus. Going to Mayo Clinic 3-2 for a 2nd opinion. I would love to hear a success story!

  3. Dallas Critical Care MD, FCCP says:

    Mr. Vick has done a great public service to help raise awareness of the disease, and he is to be congratulated for his courage.

    Mr. Vick’s comments imply that statins or GERD treatments might cause or make worse the IPF, and that he is better for avoiding them. It is understood that he is exercising his right to choose how he is treated according to any reason he sees fit.

    Actually it is more true that there are benefits to the use of these medications in cases of IPF. Statins have been proposed as a stabilizing anti-inflammatory treatment for patients with IPF, and this issue is under current study. There is a very rare type of reversible lung fibrosis that is a allergy to statins, but it is not IPF.

    Proton pump inhibitors for treatment of GERD have been supported as a stabilizing treatment for IPF as well, and over 90% of IPF victims have GERD, which may be one of the underlying causes of IPF.

    I would not want persons on treatment with statins or reflux drugs to stop their use due to an unfounded fear of getting IPF.

    1. yamatograd says:

      There are two studies posted at the nih.gov/pubmed site that state there is a possibility of a connection (“…suggest that statins may influence the susceptibility to, or progression, of ILD) between statins and IPF. They are both fairly new studies. We are taking a copy of the two papers to my husband’s pulmonary doctor when he sees him next week. My husband has been on statins since the late 80’s – and while there are other factors in his IPF, you just never know…and finding as many pieces of the puzzle as possible will help.

  4. Richard Patton says:

    A year ago I was told to go home and die from IPF so we moved to DFW. This was a good move, I got ill and was fortunate enough to get a pulmonary Doctor who coordinated an evaluation for double lung transplant. The team at UTSW accepted me and did all types of testing to work up a transplant number. I wound up with a number of 92 on the nationwide list. Same day 11 March 2011 I was matched with a pair of lungs and had a transplant same date. Since I was on list 90 minutes the team at UTSW Dallas nicknamed the miracle patient. I admit it was a scary disease and illness, If you can get accepted for a workup expect some testing of your ability to handle frustration, it is worth all they throw at you.

  5. Pieter van den Assum says:

    If you want more information on idiopathic pulmonary fibrosis (IPF) please visit the websites of IPF Today, the coalition for pulmonary fibrosis or the pulmonary fibrosis foundation.

  6. Joanne says:

    My Mother was diagnosed with this disease in December of 2011. We had never heard of this disease but in my research the only cure is a lung transplant. At 86 years of age she would not be a candidate for such a procedure I don’t believe. She had a persistent cough but never checked into it and we were told she has probably had this disease for five years. So if you have an ongoing cough have yourself tested. This is a horrible thing to witness a love one go through!

  7. Gladys Underwood says:

    Some of us with Pulmonary Fibrosis can not get lung transplants, whether it is because of other health issues or the lack of insurance… The key for me is getting the word out, so that maybe someone will start doing research on this disease and it could end with me…. I went to the Mayo Clinic in Jacksonville, Fl saw a great physician, he was the one who told me no magic pill… So I pray that there will be one, one day to end PF.. Until then knowledge is key and support is very important… I am lucky I have a great support system….

  8. B Langley says:

    I lost my Mother to IPF in 2010. She beat the odds and lived with the disease for 9 years. She was told that her many years of working in the textile industry contributed to her developing the disease. In the end she too was too old and weak to be considered for a lung transplant. It is a terrible thing to see a loved one go through. I was surprised to hear that it is as fatal as breast cancer. While there is good information on the National Heart Lung and Blood Institute website, it would be good to raise public awareness.

  9. Nick says:

    I just want to comment on transplants. Although there are some comments here that refer to transplants as a “cure” for pulmonary fibrosis, it’s not quite that simple. If the underlying causes are still there, the fibrosis could return to the new lungs. Further, transplant isn’t really that great of an option because it is like trading one disease for another. The median (average) survival time after transplant is only five years currently, and less than 30% live 10 years. Transplant recipients have to take many immuno-suppressants every day (something in excess of 20 pills throughout each day) in order to avoid rejection, and many die of rejection anyway. Further, since they are on so many immuno-suppressants, they need to be especially careful to avoid germas and infection and can even die from a common cold.

    1. Carol Watson says:

      I have this disease and have been told by a member of the Transplant team at Univerairy Hospital in Denver, CO, That it does NOT affect the new lung(s)! I’ was diagnosed in 2008 and am 67 years old and am treated at National Jewish Hospital.

      Please check your facts again!

      1. Nessie says:

        Carol, I have to agree with you- My father was told the same thing {I was sitting in the exam room with him}.

      2. Carol Watson says:

        Thank you, Nessie! That makes 2 of us…..perhaps we need more for a quorum!! I know what I was told, also by a member of the Transplant team, because I asked him that same question. Those things stay with you!

  10. Susan says:

    My cousin also had pulmonary fibrosis. She got the diagnosis when she was 27 years old with a 3 year old and another baby on the way. It took a couple of years, but she was blessed with a double lung transplant. That is the only “cure” for this condition. No doctors could explain how she got it, and there is NO OTHER treatment at this point. She will now spend her life in an out of the hospital to deal with rejection issues, and will be on immunosupressants to fight the rejection. It is sad, but it seems the only way to have extensive research done is for those dealing with this condition to be very vocal. I had no idea that over 40,000 people would be diagnosed or die from pulmonary fibrosis this year. That is not right.

  11. Kathy Fischer says:

    I would like to contact a local TV station and forward this video and story to them to see if they would possible do a story on this. Can anyone tell me how to sare it with a local news station….not sure how to do that. Thanks

  12. Barry says:

    My wife died because of IPF, I need to know why she got it.
    Urgent research is needed into this terrabile illness.
    Barry Cant UK

  13. Faye says:

    My husband passed away in 2002 with this disease. He was diagnosed by his doctor as having bronchitis. Finally we went to a lung specialist who diagnosed the disease. My husband after hearing the 6 year life span from onset figured he had another 1 1/2. Too bad no one thought to have him diagnosed before then. But being incurable probably would not have made a difference but if found sooner he would have been a candidate for a lung. He passed at 65. Before this disease he was like many of you, a healthy strong individual. Hopefully more can be done. The doctors could find no reason for this. Acid reflux was the closest they could surmise. He was drowning in his lungs.

    1. Carol Watson says:

      In my interview with the transplant team, I was told that my age (then at 64) was not firm line but a more flexable one. More had to be factored in such as overall health and physical conditions including weight. I was told that even 70 could be considered if the other factors could be met. I was told then that I was not sick enough then to be put on the list, and was not too old—yet! Since that spelled a pretty CRAZY-making place for me to be in I did some soulsearching!! I contacted my pastor as I wanted to live my life as fully as I can. Now I am the Director for a Mentoring program in elementary schools for “at risk’ kids. I know that none of us lives forever and am grateful for the time I have left and fully intend to use that to spread as much good as I possibly can. I am grateful that I was able to recognize early on that life has no guarantees and if we live well, we ‘win’!! My “Ahaaa Moment” was when I realized, “Joy doesn’t ring your damned doorbell–you have to LOOK FOR IT”!!

      We all have choices in this life….and I chose God and what He teaches! I am not afraid to die, but I do want to live in the best way I possibly can!! I know everyday that I make a difference in chiildrens lives.. What can be better than that!!

      1. Jornee says:

        You are certainly doing the right thing by choosing God. Just make sure you are in his Church. There was one Church back in the bible days, and as far as God is concerned, there is still one. All of the others are man-made (Check the history books as to when they began). Jesus is only going to save HIS church. He said in Matthew 16:18…Upon this rock I will build “My Church…. Check out Romans 16:16 to see which church that is. God Bless you.”.

  14. Mike Williams says:

    My father died of this terrible disease. It took only a few months between onset and death. It was caused by a medication he as taking for a different health issue and even oxygen only bought an extra weeks time..

  15. Peggy Dixon says:

    My dad died of it in 2010. He had it for at least 10 years but was officially diagnosed about 3 years before he died. He worked in a heat treating plant (asbestos) and they feel that is where it was from. It didn’t realize that it was as terrible as breast cancer. He really suffered towards the end but he was 87 and lived a VERY full life. Bowling, hunting, fishiing, biking, walking and many other activities. He did not look 87 he looked like he was in his early 70s. I miss him and am sorry that he had to suffer so bad.

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