Exhale

The official blog of the Lung Institute.

End Stage Pulmonary Fibrosis

End Stage Pulmonary Fibrosis

People living with pulmonary fibrosis, interstitial lung disease and other chronic lung diseases have often discussed their condition’s stages with their doctors. The traditional pulmonary fibrosis staging system uses a patient’s forced vital capacity (FVC) score from a pulmonary function test to determine a patient’s pulmonary fibrosis stage. Generally, a predicted FVC score of more than 75 percent is mild stage pulmonary fibrosis. A FVC score of 50 percent to 75 percent is moderate stage pulmonary fibrosis. Severe stage pulmonary fibrosis has an FVC score of 25 percent to 49 percent, and scores less than 25 percent are considered very severe. People in severe or very severe pulmonary fibrosis may also be considered in end stage pulmonary fibrosis. Here are the facts you need to know about end stage pulmonary fibrosis.

What are the end stage pulmonary fibrosis symptoms?

Pulmonary fibrosis affects everyone differently. Each person with pulmonary fibrosis has a unique, individual experience with the condition. Some people progress rapidly while others progress slowly. End stage pulmonary fibrosis is sometimes called the final stage of pulmonary fibrosis. While disease progression varies, there are some common end stage or final stage pulmonary fibrosis symptoms.

For example, some people have reduced lung function. Low blood oxygen levels caused by reduced lung function can make the body retain fluids. Typically, fluid retention occurs in the legs and abdominal areas. However, it can also happen in other areas of the body. Pulmonary fibrosis flare-ups can worsen symptoms and reduce blood oxygen levels more. After a flare-up, lung function doesn’t return to the level it was before, and breathing usually becomes more difficult.

End Stage Pulmonary Fibrosis Symptoms Include:

End Stage Pulmonary Fibrosis

  • Chest pain
  • Depression
  • Poor appetite
  • Increased anxiety
  • Bothersome cough
  • Becoming housebound
  • Reduced lung function
  • Disturbed sleep patterns
  • Need for intensive home support
  • Frequent flare-ups and hospitalizations
  • Increased severity in shortness of breath
  • Difficulty maintaining a healthy body weight

How can I manage end stage pulmonary fibrosis symptoms?

There isn’t a cure for pulmonary fibrosis. However, you can manage symptoms. Some people find it helpful to use a small handheld fan when they feel breathless. The feeling of air on your face may help it feel easier to breathe. Keep the handheld fan with you, so you can use it when you need it.

If you have low blood oxygen levels, your doctor may prescribe oxygen therapy. Oxygen is essential for a properly functioning body. Oxygen therapy helps your body maintain a better blood oxygen level. You and your doctor will work together to assess and monitor your oxygen therapy needs.

Many people find joining a pulmonary fibrosis support group helpful in coping with their condition. By participating in a support group, you can learn from other people who are going through similar challenges. Talk with your doctor about local support groups. You can also search for online pulmonary fibrosis support groups, such as PatientsLikeMe. Group members may share coping strategies, exchange information about treatments they have tried and listen to you as you express your feelings.

Some people prefer one-on-one counseling instead of a support group. A trained, licensed counselor could be a great addition to your medical team. A counselor can teach you coping strategies, relaxation techniques and other tools. Learning and using these types of techniques can help you relax when you feel increased breathlessness.

What are the end stage pulmonary fibrosis treatment options?

End Stage Pulmonary Fibrosis

End stage pulmonary fibrosis treatment options are individualized depending on what the patient needs. If a patient feels anxious or has symptoms of depression, a doctor may prescribe medications to help ease symptoms and improve mood. Improvements in mood can often help with breathing and mobility.

Many people with end stage pulmonary fibrosis find it difficult to maintain a healthy weight. Your doctor may recommend eating certain foods and avoiding others. For example, cruciferous vegetables, such as broccoli, cabbage and cauliflower, may cause gas and bloating. Many people with chronic lung diseases avoid these types of foods. Your doctor may recommend trying nutritional drinks, like Boost or Ensure, to help you get the nutrients and calories you need.

Your doctor may prescribe a variety of medication and therapies. Common end stage pulmonary fibrosis treatments include inhalers, corticosteroids, immunosuppressive medications, anti-inflammatory medications, anti-fibrotic medications, oxygen therapy and lung transplantation surgery.

Some people have found alternative therapies helpful as well. Cellular treatment for pulmonary fibrosis works to promote healing from within the lungs. Under the supervision of their doctors, some people have reduced their oxygen therapy use, increased their activity level and improved their overall quality of life after treatment. People in any stage of pulmonary fibrosis, including end stage pulmonary fibrosis, may benefit from cellular therapy. If you or a loved one has pulmonary fibrosis, interstitial lung disease or another chronic lung disease and would like to learn more about cellular therapy options, contact us at (800) 729-3065.

10 Comments

  1. Lung Institute

    2 months ago

    Douglas:

    Thank you for your comment and question. We are sorry to hear about your medical conditions. We have on occasion done clinical trials, though we are not currently looking for volunteers. We also are hoping that insurance companies would see it to cover this type of treatment to give people a chance to address the progression of their disease and not just treat their symptoms. We would recommend you contact one of our patient coordinators to discuss your situation.

    Our dedicated medical team has a wealth of knowledge about cellular therapy, treatment options, candidacy, cost and more. We’re happy to answer your questions, so feel free to give us a call at (855) 313-1149. We look forward to hearing from you soon.

    Sincerely,

    The Lung Institute

  2. Douglas

    2 months ago

    Hi my name is Doug and I also have IPF,is there any clinical sTem cell trIals i could be eleg abal for?or any pro bono,done i m a medicare,medicaDe insured plus Adapt, i also have had HIV for 34 years i take my meds twice daily and my counts are amaziNgly well! Threw many years of trail and error as when I began the med no onenew what the side effects would be,so ,ive been down that road before after fighting to gain my heath back after so many years of struggle,it would be asham not to at least have a shot at cell therapy,i hope your company can findit in there heart to throw me a bone and at least give me a fighting chance ,im sure we can work wonders together ,and show those ins co. That this does work! And people are dying wegot to startsomewhere, please find itin your hearts to help us

  3. Lung Institute

    3 months ago

    Frank:

    We would suggest you contact one of our patient coordinators to discuss your medical condition and see if you are a candidate for our treatment.

    We have a dedicated medical team who have a wealth of knowledge about cellular therapy, treatment options, candidacy, cost and more. So, feel free to give us a call at (855) 313-1149. We look forward to hearing from you soon.

    Sincerely,

    The Lung Institute

  4. FRANK HARBISON

    4 months ago

    CAN YOU HAVE STEM CELL THERAPY IF YOU JUST HAD LUNG CANCER AND YOU ARE TRYING TO FIGHT PF

  5. Lung Institute

    6 months ago

    Billie:

    Unfortunately, at this time, Medicare, Medicaid and insurance companies don’t cover treatment. However, we’re hopeful that treatment will be covered in the near future. Keep in mind that it will take some time before the insurance companies see a financial benefit in their favor and then decide to cover it. We’re happy to answer your questions about cellular therapy for chronic lung diseases.

    We have a dedicated medical team who have a wealth of knowledge about cellular therapy, treatment options, candidacy, cost and more. So, feel free to give us a call at (855) 313-1149. We look forward to hearing from you soon.

    Sincerely,

    The Lung Institute

  6. Billie Reynolds

    6 months ago

    Does medicare pay for anything regarding cellular treatment? Thanks!

  7. M R

    1 year ago

    Hello Reva,
    Thank you for your question. Unfortunately, insurances does not cover our treatment at this time. It usually takes several years before insurance companies begin covering newer medical treatments, once they’ve seen a financial benefit in their favor first. Click here to learn more about this topic. If you have any other questions, please give us a call at (855) 313-1149. Thanks again and have a great day.

  8. Reva Zanetti

    1 year ago

    Thank you for getting back to me. I have just one question, why isn’t this procedure covered under my health insurance? I would really like to know, because it’s very expensive…

  9. Matt Reinstetle

    1 year ago

    Hello Reva,
    Thank you for your post. Samantha will be sending you another email and give you a call. Thanks again and have a great day.

  10. Reva Zanetti

    1 year ago

    I called three days ago and was told I would get more information in an e-mail, but I never heard anything from you. I have IPF, was diagnosed about 3 and a half years ago. I’m very interested in getting this cellular treatment. Please get back in touch with me.

All claims made regarding the efficacy of Lung Institute's treatments as they pertain to pulmonary conditions are based solely on anecdotal support collected by Lung Institute. Individual conditions, treatment and outcomes may vary and are not necessarily indicative of future results. Testimonial participation is voluntary. Lung Institute does not pay for or script patient testimonials.

As required by Texas state law, the Lung Institute Dallas Clinic has received Institutional Review Board (IRB) approval from MaGil IRB, now Chesapeake IRB, which is fully accredited by the Association for the Accreditation of Human Research Protection Program (AAHRPP), for research protocols and procedures. The Lung Institute has implemented these IRB approved standards at all of its clinics nationwide. Approval indicates that we follow rigorous standards for ethics, quality, and protections for human research.