On September 22, 2015, I believe that day changed EVERYTHING for me in so many ways. I haven't been the same since. Of course I haven't been the same me emotionally speaking, but physically speaking, I have really began to go downhill quickly. My biopsy only helped to fuel the fire of my Pulmonary Fibrosis. I hate that I love to research so much. After the surgery was over and I was waiting to go home, so many terrible things were done to me by the nurses and believe me, I always dote on nurses. My chest tube had gotten a kink in it due to one of the nurses kicking it over and of course she left in an enormous hurry. So, I had to call a new nurse. She took cultures, called another doctor in....and sure enough I was septic from the kink and both of my lungs had collapsed. The doctor put a new chest tube in while guess what??? Leaving the kinked one inside of me. I had to wear three chest tubes including the kinked one. It was a terrible experience and one that I believe contributed to my pulmonary fibrosis.
Skip up a few months later, and I still have no real reason of why I had developed the disease or if there would be any viable courses of treatment. I turn to my family and my friends to have the support and love from them while navigating these rocky waters.
I would not recognize me as the same person I was two years ago- a 33 year old woman who landed the corporate job she had always wanted to be (driven, goal-oriented, everything I did I did it for my children). I worked out all of the time...even included my kiddos in my workouts. We played basketball almost every day. The disease has moved quickly and unapologetically through my body, and taken with it any element of an active lifestyle, a sense of independence, freedom, and most obviously, my breath.
Today, I am tethered to my oxygen unable to perform simple tasks such as getting dressed while standing, showering, moving from one room to another without needing to rest. I cough- often. I cannot recall the last time I set foot in a grocery store. I am no longer able to cook for myself or my family- a task that once was the ultimate in enjoyment for me. Sometimes, I will look out the window only to come to the realization that I haven't left the house in two weeks. I get breathless from talking, and have mastered the art of avoiding any situation that would require I walk and talk simultaneously or laugh too hard for fear that my lungs just simply couldn't handle it.
On good days, I am hopeful and incredibly grateful for the incredible and generous support system I am lucky to have. My mom and step-dad who were enjoying an empty nest, but now have reprised their roles by offering my family to stay in there house until we can afford to move out of our mold infested house, by taking me to doctors appointments, preparing meals for me, helping me watch the kids when I am sick; my husband and my children who spend every free moment they have helping me. Doctors and nurses who are dedicated to caring and helping, and making a difficult process as painless as possible. Friends I have had for years who write me often to check on me, my lung cancer family whom I only know online, and my Facebook family...who have been by my side through it all. Then there are all of my aunts and uncles, my brother and my sister-in-law, my nephews and niece, and my dad....all these people have made breathing just a little bit easier by simply being there for me. Even if they live far away- they always have such kindness and offer amazing support for me. I am blessed to have them all in my corner. They help preserve some semblance of normalcy for me-which may be the toughest non-physical attribute of this illness to reconcile- the loss of anything that is or ever was normal.
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What is Pulmonary Fibrosis?
The word "pulmonary" means "lung" and the word "fibrosis" means scar tissue- similar to scars that you may have on your own skin from an old injury or surgery. So, in its simplest sense, pulmonary fibrosis (PF) means scarring in the lungs. But pulmonary fibrosis is more serious than just having a scar in your lungs. In PF, the scar tissue builds up in the walls of the air sacs of the lungs, and eventually the scar tissue makes it hard for oxygen to get into your blood. Low oxygen levels (and the stiff scar tissue itself) can cause you to feel short of breath, particularly when walking or exercising.
Also, pulmonary fibrosis isn't just one disease. It is a family of over 200 different lung diseases that all look very much alike. The PF family of lung diseases falls into an even larger group of diseases called the "interstitial lung diseases." Some interstitial lung diseases do not cause scar tissue. When an interstitial lung disease includes scar tissue in the lung, it is called pulmonary fibrosis.
Causes and Symptoms
It can be challenging to figure out what caused your pulmonary fibrosis. Sometimes doctors are able to identify one or more causes of your disease, but it is also common to end up without an answer, despite completing a large number of medical tests. Diseases where a specific cause is not identified are often called "idiopathic" - meaning the cause is not identified or the disease occurs spontaneously.
There are many
forms of pulmonary fibrosis that are idiopathic. The one that many people
have heard of is “idiopathic pulmonary fibrosis” or IPF, but there are many
others. A few examples are:
- Idiopathic nonspecific interstitial pneumonia
(NSIP)
- Cryptogenic organizing pneumonia (COP)
- Sarcoidosis
When the cause of
PF is known, if often falls into one of these categories:
Autoimmune
diseases
Autoimmune diseases are
also called connective tissue diseases, collagen vascular diseases, or
rheumatologic diseases. “Auto” means “self” and “immune” refers to your immune
system. With autoimmune diseases, your own immune system is attacking your
lung. If you have an autoimmune disease, your immune system can cause
inflammation and scarring in the lungs. Examples of autoimmune diseases that
can cause PF include:
- Rheumatoid arthritis
- Scleroderma (now called “systemic sclerosis”)
- Certain muscle diseases (polymyositis,
dermatomyositis, and the anti-synthetase syndrome)
Occupational
exposures
Pulmonary fibrosis
can develop after significant exposure to a wide variety of inorganic dusts,
including asbestos, silica, coal dust, beryllium, hard metal dusts.
Environmental
exposures
Organic dusts,
including animal proteins, bacteria, and molds, can also contribute to the
development of some types of PF. Diseases caused by inhaled organic dusts are
often called “hypersensitivity pneumonitis”. Exposure to radiation can also
contribute to the risk of PF.
Drug
Induced or Medication exposures
Some medications have been linked to
the development of PF, including drugs used to treat:
- Infections (nitrofurantoin, sulfasalazine)
- Heart disease (amiodarone, propranolol)
- Seizures (phenytoin)
- Cancer (methotrexate, bleomycin, oxaliplatin,
radiation therapy)
Genetic/Inherited
diseases
Approximately
10-15% of those with an “idiopathic” form of PF have another family member
afflicted by the disease. This is called familial pulmonary fibrosis (FPF) or familial interstitial pneumonia (FIP). A
number of genes and genetic variants have been identified that are associated
with the development pulmonary fibrosis, but frequently genetic tests are not
performed when PF is diagnosed, as we are only just beginning to understand the
significance of these genetic abnormalities.
Symptoms of Pulmonary Fibrosis
The most common symptoms of PF are cough and shortness of
breath.
Symptoms may be mild or even absent early in the disease process. As
the lungs develop more scar tissue, symptoms worsen. Shortness of breath
initially occurs with exercise, but as the disease progresses patients may
become breathless while taking part in everyday activities, such as showering,
getting dressed, speaking on the phone, or even eating.
Due to a lack of
oxygen in the blood, some people with idiopathic pulmonary fibrosis may also have
“clubbing” of the fingertips. Clubbing is a thickening of the flesh under the
fingernails, causing the nails to curve downward. It is not specific to IPF and
occurs in other diseases of the lungs, heart, and liver, and can also be
present at birth.
Other common
symptoms of pulmonary fibrosis include:
- Chronic dry, hacking cough
- Fatigue and weakness
- Discomfort in the chest
- Loss of appetite
- Unexplained weight loss
As your condition advances, you’ll be at increased risk for life-threatening complications, including:
Life Expectancy
Life expectancy can also vary in patients with IPF. Your own life expectancy is likely to be influenced by the progression of your disease and the intensity of your symptoms. In general, the life expectancy with IPF is about three to five years.
These facts were taken from http://www.pulmonaryfibrosis.org/life-with-pf/about-pf
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I am not my illness. Yes, I may talk about my illness quite a bit. But, I have not allowed it to take me away from what is important to me. I am still God's handmaiden, a wife, and a mother to the best three children a mother could ever ask for. I will never take a single thing for granted again...especially not one single breath.
Love you all and truly mean it....and God loves you too,
Shanna xoxoxo
LUNGevity National Hope Summit: I'm participating in an event to raise money to fight lung cancer—and I need your help!
I'm planning to attend LUNGevity Foundation's National HOPE Summit in Washington, DC, in May - it's a special conference just for lung cancer survivors like me. If I can raise $1000 or more in donations, LUNGevity will cover my travel expenses, including US round-trip transportation and hotel accommodations.
Proceeds from this fundraiser will benefit LUNGevity Foundation, the leading private provider of research funding for lung cancer. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.
Please join me in my efforts to stop lung cancer—the leading cancer killer—now!
Official prayer warrior page for my fight against lung cancer: facebook.com/hope4shanna
Official blog Facebook page: https://www.facebook.com/shannabananahealthandfitness
My Go Fund Me Page (any and all donations will help with my medical funds) gofundme.com/hope4shanna2016
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