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What Are the Signs and Symptoms of Idiopathic Pulmonary Fibrosis?

01/17/2013 08:48 AM EST

Source: National Heart, Lung, and Blood Institute - NIH

Related MedlinePlus Page: Pulmonary Fibrosis

What to Expect When Considering a Transplant

01/17/2013 08:48 AM EST

What to Expect When Considering a Transplant | Pulmonary Fibrosis Foundation | pulmonaryfibrosis.org

Source: Pulmonary Fibrosis Foundation
Related MedlinePlus Page: Pulmonary Fibrosis

What Are the Signs and Symptoms of Idiopathic Pulmonary Fibrosis?

The signs and symptoms of idiopathic pulmonary fibrosis (IPF) develop over time. They may not even begin to appear until the disease has done serious damage to your lungs. Once they occur, they're likely to get worse over time.
The most common signs and symptoms are:

Shortness of breath. This usually is the main symptom of IPF. At first, you may be short of breath only during exercise. Over time, you'll likely feel breathless even at rest.
A dry, hacking cough that doesn't get better. Over time, you may have repeated bouts of coughing that you can't control.

Other signs and symptoms that you may develop over time include:

Rapid, shallow breathing
Gradual, unintended weight loss
Fatigue (tiredness) or malaise (a general feeling of being unwell)
Aching muscles and joints
Clubbing, which is the widening and rounding of the tips of the fingers or toes

Clubbing

The illustration shows clubbing of the fingertips associated with idiopathic pulmonary fibrosis.

IPF may lead to other medical problems, including a collapsed lung, lung infections, blood clots in the lungs, and lung cancer.
As the disease worsens, you may develop other potentially life-threatening conditions, including respiratory failure, pulmonary hypertension, and heart failure.

What to Expect When Considering a Transplant

“A potential transplant patient will be looked over
from the hair on the top of their heads all the way down to their toenails.”
—Susan Long, LCSW, Transplant Social Worker at Loyola Hospital, Chicago

Transplant Evaluation:
You will be evaluated by a transplant team which may include: a pulmonologist, transplant surgeon, transplant nurse coordinator, transplant social worker, dietician, psychologist, physical therapist and insurance coordinator. Your physical health will be closely evaluated as well as your emotional health and social support system.
Following Evaluation:
Once you are evaluated and a decision has been made to proceed with the transplant, you are given a Lung Allocation Score (LAS) based on a variety of factors including your age, severity of disease, lung, heart and kidney function, and the laboratory values from your tests. This score determines your place on the UNOS waiting list.
Receiving Placement on the Waiting List:
You are on the transplant list. And the waiting begins. This can be an incredibly stressful time in your life and in your family’s life. Remember to take care of your health, follow your exercise and dietary guideline, keep up with your pulmonary rehabilitation program and keep all of your scheduled appointments with your physicians. Your transplant center may offer a support group to individuals awaiting a transplant. Always make sure your transplant team can reach you during this time because you never know when they will make the call that they have new lungs for you.
Transplant Surgery:
The surgery can last anywhere from four to ten hours depending on several factors including whether it is a single or double lung transplant, your current medical condition and the institution where the transplant is being performed.
Following Surgery:
After your surgery, your transplant team will manage any post-op challenges that may arise. You will begin taking anti-rejection medications as well as immunosuppressants and any side effects or adverse reactions will be closely monitored. Remember everyone will adjust to their new lungs and medications differently.
Before you leave the hospital to go home, make sure you and your caregiver review with your transplant team: your medication schedule, your follow-up appointments, your diet & exercise restrictions, how to safely prepare your home for your arrival, and how to manage your pain.
Remember:
A lung transplant is a major surgery and it will take some time to feel like yourself again. Some transplant recipients will take longer to feel better than others but do not get discouraged and lean on your support system! Additionally, a lung transplant may not be an option for all patients and some patients may choose to opt out of a lung transplant. Whatever the case, it is crucial to have a support system in place and discuss all of your options with a medical professional.