Friends

What does a friend mean to you?  Look at the person in this picture.  Soft brown eyes, mischievous smile, a go getter look on her face.  She is a mother.  A fun mom who gets on the level of her teen, a daughter that counts on her and loves her so. Shawna has Pulmonary Fibrosis.  She loves laughing, helping her friends smile, her baby dogs, her beautiful daughter, music, the beach, crocheting, geeking out and life.

Since my husband was diagnosed with this disease at age 49 and passed away from it in 2011, I know this is nothing to play with.  There are many (as many as breast cancer) that pass away from it every year in the United States.  Health care is difficult, even when there is is cure, because of finances many cannot afford to live.  In this case, the only cure, and it is not guaranteed, is a lung transplant.

I have been blessed to know Shawna, and now, she has made the huge decision to pursue this operation.  It takes a lot.  Bravery, Acceptance, Flexibility, and Finance.  Let's not forget Hope.  Can you imagine, putting your whole life out there for everyone to see, with the hopes of raising some money just so you can, live, Breathe?
https://www.gofundme.com/shawna-fetterolf-medical-fund?fbclid=IwAR3VyHnYdxrxNbvoyeqSkv_wGFyGjPHqF3q9SLfY-2ACRuUlXFtvdACo9e8https://www.gofundme.com/shawna-fetterolf-medical-fund?fbclid=IwAR1_RaAIb2INj5-0-ag769y6DJjxN47YG5bF_ju7P880cSItd4aAQEzoPn8

Study discovers biomarkers to predict the progression of idiopathic pulmonary fibrosis

Article via;   http://www.medicalnewstoday.com

A new blood test developed by experts at Royal Brompton Hospital could give patients with idiopathic pulmonary fibrosis (IPF) a better idea of their prognosis and whether or not treatments that can slow down the progression of the disease are working. 

The condition - thought to affect up to 20,000 people in the UK - causes progressive scarring of the lungs and is often fatal. 

The Prospective Observation of Fibrosis in the Lung Clinical Endpoints (PROFILE) study, the largest and most detailed observational IPF study of its kind, recruited 214 patients, who were identified by Royal Brompton Hospital and the University of Nottingham. The findings have been published online in the Lancet Respiratory Medicine this week in a paper written by IPF experts, including Dr Toby Maher, consultant respiratory physician at Royal Brompton and head of the Fibrosis Research Group at Imperial College London, Anne-Marie Russell, senior research nurse at Royal Brompton and Dr Gisli Jenkins at the University of Nottingham. 

The study, conducted at the National Institute for Health Research (NIHR) Royal Brompton Respiratory Biomedical Research Unit (BRU), took samples of blood and analysed the concentrations of several neoepitopes, which are types of proteins. These were measured at baseline and then at regular intervals throughout the following six months. Physiological measurements, including the amount of air which could be forcibly exhaled from the lungs and how much oxygen travels from air sacs (alveoli) in the lungs to the bloodstream, were also taken to detect how the condition was progressing. 

The research, which is the largest and most detailed observational IPF study of its kind, showed that the concentration of neoepitopes were higher in people with the condition compared with healthy controls. Some of the biomarkers were associated with worsening disease and outcomes and changes in their concentrations after three months appeared to predict the progression of IPF earlier than the physiological measurements. 

The results suggest that biomarkers could also be useful in the early stages of clinical trials for new treatments, as the measurements could indicate when the patient is responding to them.

Measurement of the neoepitopes may also be of use to clinicians when it comes to deciding what treatment to give patients, as it could potentially inform them if medication is working and thus help with the management of the disease. 

This could now have particular use because there are two antifibrotic drugs, pirfenidone and nintedanib, which have been approved for use in the UK within the last two years and both have been shown to slow disease progression. 

Commenting on the research, Dr Maher said: 
"These biomarkers have the potential to improve the treatment of IPF by enabling doctors to determine whether treatments are working or not at an early stage and before permanent lung damage has developed. Furthermore, the biomarkers may enable clinical trials in IPF to be much shorter, something which should speed up the process of making new treatments available for this devastating disease." 

Dr Maher and Dr Jenkins are involved in continued research which aims to make these blood tests available in specialist clinics. Further research, to search for other biomarkers of IPF and potential new ways of treating the disease, is ongoing.

 It is not known why IPF occurs, but it appears to affect cells that line the alveoli in the lungs, causing them to become damaged and die. In response, the body tries to repair the damage by releasing fibroblast cells, but the over-production of these cells leads to scarring and hardening (fibrosis) of lung tissue. The scarring means the lungs cannot work properly and patients are often short of breath and have a persistent dry cough, fatigue and gastric reflux. Patients with the condition have an average life expectancy of three years and the number of cases in the UK is increasing by around five per cent a year. 

Dr Maher said:
 "Although newly available treatments may help, this ongoing research is required to ensure better outcomes for patients with IPF." 

The research was funded by GlaxoSmithKline and the Medical Research Council and sponsored by Royal Brompton & Harefield NHS Foundation Trust and the University of Nottingham. Royal Brompton has the only unit in the UK solely dedicated to the management of patients with interstitial lung disease (ILD), the term used for more than 200 lung diseases that affect the tissue and space around the air sacs in the lung, including IPF. Experts at the hospital care for the largest number of IPF patients in the UK and receive around 1,000 new referrals every year. 

Longitudinal change in collagen degradation biomarkers in idiopathic pulmonary fibrosis: an analysis from the prospective, multicentre PROFILE study, R Gisli Jenkins, PhD, Juliet K Simpson, PhD, Gauri Saini, MD, Jane H Bentley, PhD, Anne-Marie Russell, MSc, Rebecca Braybrooke, RGN, Philip L Molyneaux, MD, Tricia M McKeever, PhD, Athol U Wells, MD, Aiden Flynn, PhD, Prof Richard B Hubbard, MD, Diana J Leeming, PhD, Richard P Marshall, PhD, Morten A Karsdal, PhD, Pauline T Lukey, PhD, Dr Toby M Maher, PhD, Lancet Respiratory Medicine, doi: 10.1016/S2213-2600(15)00048-X, published online 11 March 2015.
Source: Royal Brompton & Harefield NHS Foundation Trust

5 Things Every Person Living with a rare disease understands ~Written By: Rachel Wilson

5 Things Every Person Living with a Rare Disease Understands

Most people have heard the term “rare disease” but far fewer can name a rare disease let alone imagine what life might be like for those who have one. When it comes to rare diseases, including rare pituitary diseases like Cushing’s disease and acromegaly, what’s truly rare is the kind of public awareness and understanding that people with a rare disease truly deserve.

Rare Disease Day, which falls on February 28, aims to spread awareness about these conditions and the impact they have on patients’ lives.

How rare is “rare?” On one hand, people with a specific rare disease are statistically few and far between – in the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans. In the UK, a disease is considered rare if it affects fewer than 50,000. On the other hand, there are over 6,800 such diseases, according to the U.S. National Institutes of Health (NIH), so for something considered “rare” there sure are a lot of them.

In support of the rare disease community, Novartis will be launching an educational initiative called “A Day in My Shoes” which aims to tell the stories of people living with acromegaly. We spoke to several individuals for this post, and, as part of this effort to educate, they shared five things almost every person living with a rare diseases knows:

1. Getting properly diagnosed is one of the biggest challenges. Rare diseases are so rare that the symptoms are often misunderstood and as a result, people with rare diseases often spend years trying to get properly diagnosed. In the case of acromegaly, getting a correct diagnosis can take anywhere from six to 10 years and for Cushing’s disease, it can take about six years on average. By the time they’re diagnosed, many patients are just relieved just to put a name to their symptoms.
2. Your friends may know about your diagnosis, but only a few gems will really get what a chronic illness is or what it means. Many people are so uninformed about rare diseases that they expect your rare disease to clear up like a lingering flu. Blogger Rachel Wilson has Cushing’s disease, an endocrine disorder caused by a noncancerous pituitary tumor which ultimately leads to excess cortisol in the body. “There’s not a lot of empathy,” she notes. “Even some people that know me kind of get annoyed. ‘You’re sick again?’ or ‘What do you mean you can’t walk with us? But you walked last week!’”
3. You choose whom to tell very, very carefully. Most people living with rare diseases agree that once a diagnosis is public knowledge, people treat you differently. “I want them to know I have serious health issues but… I don’t want people to look at me like I’m disabled,” Rachel explains. There’s a paradox that patients face – wanting to tell but knowing that the people they tell are likely not to truly understand without a lot of effort on their part to explain…and then still, they probably won’t get it like they do with more widely known diseases such as cancer or multiple sclerosis.
4. Rare disease patients often play a large role in educating their doctors. Rare diseases aren’t just rare to the general public, they’re often rare to the physicians who treat them, even specialists. You’ve tried what seems like every available treatment, read medical journals, and done your own research. With all this, plus just living with the condition, you are the world’s foremost expert on how your rare disease affects you.
5. People will try to cure you. Not just your doctors. Everyone. Your Aunt Sally swears by a green smoothie and its healing properties. Your son’s third grade teacher has these supplements you simply have to try. “Everyone knows everything about anything,” is how Rachel puts it. “People like to diagnose you, or treat you, or, since they heard about this on a TV show, they know it’s not as bad as you make it out to be.” Many rare disease patients feel that people equate “rare” to “not really understood by the medical community.”

And while some of these realities for people living with a rare disease may indicate that they want both privacy and just to be treated like everyone else, most are strong advocates for public education efforts. Cushingstories.com co-founder Rae Collins notes, “Educating was key. To help others understand the disease, for me to understand it more, to help doctors even understand what I was going through. The more people who understood in my life, the better it became to me.”

Check out Novartis’ The Voices of Acromegaly and Voices of Cushing’s disease, a three-part video series that feature advocates, caregivers and people living with rare diseases on the Novartis Rare Disease YouTube Playlist.

For additional information on rare diseases and Rare Disease Day, visit Rare Diseases: More Common Than You Think? or the Rare Disease Day 2015 website.

via;  http://www.novartispharmaceuticals.com/en/stories/detail/5-things-every-person-living-with-a-rare-disease-understands

L O V E

"If you are not too long, I will wait here for you all my life."

Oscar Wilde

Dear Darling, Happy Valentine's Day.  It has been three years and two months since I have kissed you.  I miss you, Babe.  I dream of you often.  As the years have passed~ Spring, Summer, Autumn and Winter continue to flow as scheduled.  The children are growing, fine young people.  Our home, still safe and comforting.  The river so surreal, a beautiful gift everyday.  Sunrise and sunsets, with birds flying and making sounds.  The fish jumping upon waves of diamonds.  Clouds, kissed by light, whisper and beckon .  

The Stars, though, as beautiful as they are, To me, do not shine as brightly.  However, the Moon, is as mystical and glowing~ as ever before.  Blooming and ever-changing, like a Rose.  

I could go on and on.  Words really can't explain the transformations that occur moment by moment in the daily life.  For You, words do not have to.  You penetrate my heart, existing in all that my senses allow. ~~~Breathing~~~

“There is a time for departure, even when there is no certain place to go.” 

Tennessee William

****Hello, this is Breathing, I just wanted to Thank You for all the support you have given to Pulmonary Fibrosis, as well as me.  My 'counter' indicates 13,208 people have come to my blog, from many different countries.  I hope our family's experience has helped to raise awareness.  I do know this blog has helped me through such a difficult time.  I have shared with you our experience and have never held back, because most of this I typed in 'real-time'.  Now, I have transformed a bit since my husband's passing.  Not too much, but just enough to somehow realize that I have many thoughts that are better realized in my own time.  I will not post as much here, but anything that seems newsworthy to our cause will not be ignored.  Thank You my beautiful friends.  You show support just by coming here and reading this:

The word "pulmonary" means “lung” and the word "fibrosis" means scar tissue – similar to scars that you may have on your 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 lung. 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 and exercising.

Also, pulmonary fibrosis isn’t just one disease. It is a family of more than 200 different lung diseases that all look very much alike (see “Causes and Symptoms” below). The PF family of lung diseases falls into an even larger group of diseases called the “interstitial lung diseases.” Some interstitial lung diseases don't include scar tissue. When an interstitial lung disease includes scar tissue in the lung, we call it 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

The Pulmonary Fibrosis Foundation is here to help you understand what it means to have pulmonary fibrosis. You can always reach us through our Patient Communication Center at 844.Talk.PFF or by email at pcc@pulmonaryfibrosis.org.

~~~~For my Baby, On Valentine's Day~~~~

"FIELDS OF GOLD"

You'll remember me when the west wind moves
Upon the fields of barley
You'll forget the sun in his jealous sky
As we walk in fields of gold

So she took her love
For to gaze awhile
Upon the fields of barley
In his arms she fell as her hair came down
Among the fields of gold

Will you stay with me, will you be my love
Among the fields of barley
We'll forget the sun in his jealous sky
As we lie in fields of gold

See the west wind move like a lover so
Upon the fields of barley
Feel her body rise when you kiss her mouth
Among the fields of gold
I never made promises lightly
And there have been some that I've broken
But I swear in the days still left
We'll walk in fields of gold
We'll walk in fields of gold

Many years have passed since those summer days
Among the fields of barley
See the children run as the sun goes down
Among the fields of gold
You'll remember me when the west wind moves
Upon the fields of barley
You can tell the sun in his jealous sky
When we walked in fields of gold
When we walked in fields of gold
When we walked in fields of gold

It's The Simple Things That Are Important~ Written By: Christy Mccullough

Five years....five years that my life was changed forever. The day I was told and crying coming out of that office and not even knowing what exactly it was I had but knew I would have to have a lung biopsy. How could this be happening to me? What would my life be like? So many things running through my head and not knowing where to turn. I didn't even know what Interstitial Lung Disease was and what life was going to become. It took me until after the New Year to even realize what was happening and longer to tell family how bad it was. 

I went through stages of denial, grief, anger. The thought of never seeing my children graduate, not being there to help my daughter pick a wedding gown, never seeing my grandchildren. Why was this happening to me? I thought my life was over. My children, family, and friends would watch me die slowly and there was nothing I could do. But I was wrong. I was not raised to give up and I have been through many things that I came out of and I would keep fighting not for me, but for my kids. To know that mama doesn't give up and show them you keep fighting no matter what. 

Days are not always easy. I gained weight from meds and lost my self confidence of not just as a person but as also being a woman. I can no longer breathe as easy and do things like I could. I don't like asking for help, never have. And hate when I can no longer do things as I could before without having to stop cause I can't breathe. I would never be the same person as I once was. 

I found support though with family and friends and also support groups in which those people have now become like family.  I can't say that it's not hard as it was but I have come to terms that one day my time will come. We all leave this world one day but somehow it's different when you know that you only have so long and there's nothing you can do about it. The one thing you do know is that you live. Live everyday. It's funny that at times I forget that I'm sick and have a moment like why am I coughing so much and remember~ oh yeah "lol"! Five years of coughing so hard you break your ribs, Five years of changing how you do things, five years to learn that it's the simple things that are important. 

So many people take for granted the little things, little things as just being able to breathe. Be grateful for the little things and never take life for granted. I have made the five year mark and plan on fighting till the end. I thank God for giving me the chance to wake up and try again everyday. I thank God for the family and friends who love me and give me the strength I need at times and a husband who has done more than support me in every way everyday.

**Thank You, Christy for allowing me to share your thoughts and to help lend hope for those diagnosed with Pulmonary Fibrosis to know that it is a learning process and perhaps, somewhere within that process is a deeper understanding of the things that are truly valuable in our lives.**  

~~~Breathing~~~

Information on Managing your symptoms of Idiopathic Pulmonary Fibrosis~ via; Lungs and You

This article is via; Lungs and You, please check out their website for more great information at:  www.lungsandyou.com

There are no FDA-approved medicines that treat IPF. However there is a good deal of research being performed and several clinical trials are underway to investigate potential treatments for IPF. These treatments are experimental and the impact they have on the course of IPF is currently being studied.

Despite the lack of medicines approved to treat IPF, there are still things you can do to help manage IPF symptoms and try to sustain your ability to perform daily activities for as long as possible.

The approaches used to manage the symptoms of IPF are designed to meet each patient’s unique needs. Every person’s medical history is different. In addition, people with IPF frequently suffer from other medical conditions. These other conditions may have an impact on the course of IPF (See "Managing other conditions" below.)

It’s also important to remember that each patient experiences IPF differently, and while some people with IPF don’t live long after getting their diagnosis, others may live longer than the often-quoted averages. Working together, you and your doctor can develop a plan to help you manage your symptoms in an effort to sustain your ability to participate in daily activities for as long as possible. Common approaches to managing IPF symptoms are listed below.

Summary of options for managing IPF symptoms

	Pulmonary Rehabilitation	Includes a range of conditioning and breathing exercises The goal is to help patients function to the best of their ability
	Oxygen Therapy	Recommended for patients who have low oxygen levels May help reduce breathlessness, enabling the patient to take part in pulmonary rehab exercises
	Lung Transplant	Can improve both life expectancy and ability to participate in daily activities Reserved for patients who have no other significant health problems, such as cancer; heart, liver, or kidney disease; or chronic infection, among others IPF is now the leading reason for lung transplantation in the US Lung transplantation has significant risks, including illness or fatality from the surgical procedure itself, infection, and cancer due to the use of drugs that suppress the immune system; you should discuss these risks with your doctor before considering a lung transplant
	Clinical Trials	Taking part in clinical trials may be an option for some people with IPF Talk with your healthcare team about your condition and your options

Managing other conditions

As mentioned above, it is common for people with IPF to also have other medical conditions (called “comorbidities”). These may include obesity, diabetes, pulmonary hypertension, obstructive sleep apnea, coronary artery disease, and emphysema.

These conditions will often require their own treatments and medicines. They may even have an impact on the course of IPF. Remember to always take your medicines as prescribed by your doctor.

If you have any questions about other health conditions you have, or the medicines you are taking for them, be sure to talk to your doctor.

Pulmonary Function Test (PFT)

Many people diagnosed with lung restricted diseases are referred to take a Pulmonary Function Test (PFT). National Jewish Health gives an over-all description of what the test will entail.

Routine Pulmonary Function Test

Here is also a link that will help you understand the results of your PFT:

http://www2.nau.edu/~daa/lecture/pft.htm

Idiopathic Pulmonary Fibrosis via; The Canadian Pulmonary Fibrosis Foundation

More of us need to know about pulmonary fibrosis~ via; Letters to the Editor, AZ Central

September is Global Pulmonary Fibrosis Awareness Month.

It seems every dread disease has a special month — and pulmonary fibrosis is no different. Some stats about this disease:

• This disease is 100 percent fatal.

• Each year, 40,000 will die from PF, about the same number of fatalities as from breast cancer.

• There is no known cause or treatment, and the disease is relentlessly progressive; average lifespan from time of diagnosis is two to five years.

• PF patients gradually lose the ability to process oxygen as their lungs fill with scar tissue and become stiff. Oxygen can't pass into the blood.

• Four times as many people have PF as ALS or cystic fibrosis.

• Since 1999, the number of patients with PF increased by 156 percent, to more than 128,000, and more than 50 percent of the cases are misdiagnosed for a year or more.

• A lung transplant is the only option to extend life, but 50 percent of those on the list will die before receiving a transplant.

• There is only one PF support group in Phoenix and the surrounding area.

• St. Joseph's Hospital and Medical Center is doing research on medications for PF.

My husband was recently diagnosed with PF.

More information is available at pulmonaryfibrosis.org.

— Madeline Wollmer,

Laveen

Shared by:  Pulmonary Fibrosis News / Scoop.It!

Pulmonary Fibrosis Trust

Please visit another great website from the UK:  Pulmonary Fibrosis Trust at www.pulmonaryfibrosistrust.org

Number of Patients Via; David Lederer, MD

Please take a look at Doctor Lederer's website:  Pulmonary Fibrosis: Clearing The Air

What is Pulmonary Fibrosis? Via; Pulmonary Fibrosis Foundation

Blue it Up or Pay it Up Blue Monday Fats Domino~ via; YouTube

Every Breath Counts~ Idiopathic Pulmonary Fibrosis- Discovery Channel- June 21st- 8:00 am ET/PT

I can't tell you how excited I am to see this documentary, Every Breath Counts~ Idiopathic Pulmonary Fibrosis on the Discovery Channel- June 21st- 8:00 am ET/PT. 

Finally, an opportunity for others to learn about this disease.  Despite the many lives it affects, it is still relatively unknown.  People who suffer from this disease, as well as their family members, desperately want to live.  Many also want awareness and general understanding of what they have to go through. In this documentary is a little piece of all of our stories. 

I lost my beautiful husband to this disease and as I watched the trailer to this film, for a brief moment, I felt as though I am watching something that is affecting someone else.  It wasn't us- this wasn't our family....  But, it was us.  This was our family's story.  My family lost a father and husband to this disease and I can never hold his hand in mine again.   

When I think about the tremendous impact of this experience being multiplied by all the others who are still being diagnosed, I know that every bit of awareness is necessary.  Even if you have never heard of IPF, do try to watch this and discuss it with a friend. You never know how that one action might help to find a cure.  

With Love,

 ~Breathing

To watch a preview, Click:  http://everybreathcountsfilm.com/

We Should All Have This Discussion ~Malcolm Weallans

It seems that being semi-retired is a misnomer, or at least it is in my case. I seem to have less time now than I used to. Besides helping NICE to train other Guideline Development Group members I also seem to have got involved with the Patient Voices part of NHS England. I think it was because of this that I heard of a conference that I attended today. The subject of the conference "The Leadership Alliance for the Care of Dying People" engagement.

This conference was one of a series of 12 being run in 12 different locations in England. The basic concept is that they are looking at how to replace the Liverpool Care Pathway and are looking for the views of patients, care-givers, care workers, and professionals as to what next. The conferences are being facilitated by a number of organizations including MacMillan, Marie Curie, help the hospices, and most of the locations are hospices so obviously they weren't expecting a large turnout.

But the subject is of great importance to all patients with a terminal condition. They really want to know what patients feel about these plans but as yet they don't know how to get patients to attend. I was appalled by the document that I received telling me about the events and I couldn't forward that to this group as I felt it gave a wrong impression. The thing I found most difficult was the title which referred to "for people at the end of life" and accompanied this by pictures of geriatrics. As we know from this group end of life is not confined to geriatrics.

But I still decided that this was worth me spending a few hours at showing people that there are significant other groups of people who should be considered in this context. I know that many of the group members will need to think about these issues and would want to make sure that they and/or their loved ones would be getting the best possible care at end of life.

The afternoon centered on discussing a document that has been produced by the Leadership Alliance for the care of Dying People. This was in response to the report produced by Julia Neuberger into what was wrong with the Liverpool Care Pathway. Basically they have decided to throw away the Liverpool Care Pathway and replace it with something else and they want to know what else. They have produced a discussion document which can be downloaded from 
www.england.nhs.uk/ourwork/qual-clin-lead/lac/
and you can also comment on this. The discussions from the 12 conferences will be discussed to make sure that whatever happens there will be no repeat of the Liverpool Care Pathway debacle.

What I found most surprising this afternoon was that there were only 3 or 4 patients and there were 30-40 others. These others were representatives from hospices and care organizations, many of whom have been trained as nurses but have chosen to give up their vocation in favor of an office job. How significant is that? The other thing that I found surprising was that they all talked about how many of the proposals in the document were covered by advance care directives and the fact that this plan does not really cover what as wrong with the LCP. As they all seemed to agree the Liverpool Care pathway was not a bad idea, it had just been misused by a number of medics who seemed to forget that there is a need for compassion towards the patient and the family and instead concentrated on making sure that they ticked all the boxes so that they would not be penalized financially.  But there was also a group who had read the document and felt that this was merely another way of explaining Advanced care Directives/Plans. I don't know about you but I have never been asked about my preferences for end of life care, and that is despite having a long term terminal condition, and having spent 5 days in a coronary care unit. And I don't recall many people mentioning such directives or plans. Surely we should all have this discussion. 

Please take some time to get involved in this process and make your views heard. It is very important that patients and carers should make their feelings known.

Written By:  Malcolm Weallans

For further information: http://www.england.nhs.uk/ourwork/qual-clin-lead/lac/

**Thank You Malcolm for sharing this fantastic information! This particular link is for those in the United Kingdom, although the concept is sound, no matter where we live. ~Breathing

Tid-Bits About Pulmonary Fibrosis (Part 1)

~For all the other Supermen and Wonder Women that fight for life every day~

●  Approximately 48,000 people are diagnosed each year with Pulmonary Fibrosis

●  Pulmonary Fibrosis is 100% fatal (without a lung transplant)

●  Every 13 minutes someone dies of PF.  That's roughly 111 people each day

  

●  3,323 will die of PF by the end of this September

●  Approximately 40,000 people die each year of PF

●  Pulmonary Fibrosis means literally "of the lung Scarring"

●  It is impossible for lungs to function when they are full of scars.

Written By: ~Anonymous

**  Thank You, Anonymous, for allowing me to publish the information you have compiled regarding Pulmonary Fibrosis.  Some of the information is heart-breaking to read, although for those of us who have experienced a loved one with the disease, or have it first hand, sharing information is our most powerful tool.  ~Breathing

Sounds of IPF Mini-mentary

Not Every Pain Shows ~Cheryl Bachelor Hetrick

Cheryl Bachelor Hetrick lives with Pulmonary Fibrosis and each day cultivates the hope that eyes will be opened to what it is truly like for those who live with chronic illness.  She writes...

I posted yesterday that the pulmonary doctor was pleased with my condition at this time. It seems that some took that as a sign that I am right as rain again.  I hate to be a downer but that simply isn't the case.  I may not have another hospital stay lurking around the corner but I am still sick; sicker than I was even just a few months ago.  There is no stopping the progression of PF.  I've been blessed that my progression has been slow and I am grateful for that.

I still have lost the life I had before.  No more spending week-ends running all over the place looking for things for the house, hunting out the right paint, etc.  I don’t drive at all any more.  No more Do It Myself projects.  Week-ends are spent in the recliner recovering from working the week before.  That’s all I do all week-end is sit in the recliner reading, watching TV or sleeping.  The same thing I do after work each and every day.

I can’t remember the last time I had the energy to even go to a movie.  I miss out on weddings and birthdays and just nights out on the town.  I only get to go hear Dirk & Tim play their music maybe once a year, and I can only do that if someone can drive me home early.  There is no way I can close a club any more.  Dirk does all the shopping now because I am out of breathe and shaking before we are half way through the store.  He does all the housework except loading the dishwasher and washing my clothes.  I can still handle those chores.  I am lucky that I have a job where I can spend most of my day sitting at a desk.  A job I need because of my sanity and the need for good health insurance.  But when I do have filing or the like to do, I have to do it no more than 10-15 minutes at a time.  Then I have to stay quiet at my desk for an hour or more.  A 10 minute shower puts me back in the recliner for 30 minutes or more.  Do you have any idea how demoralizing that is or to not to be able to vacuum your living room or mop your kitchen floor or dance with your husband???  I hope not.  Because it sucks, especially if you are the kind of person who always had to “do it myself”. 

I’m not saying all this in a bid for sympathy.  I honestly don’t or need want sympathy or pity.  Those are wasted emotions to me.  All I, and others with health issues, want is -understanding.  Please don’t assume because we are able to post to Face Book that our health issues are minor.  We do things like that to try to maintain some semblance of normalcy.  It is like grasping at straws but it’s all we can do.  Don't assume because we look "good" in a photo that we couldn't be "that" sick.  Not every pain shows. 

I’m sorry if this sounds whiny to anyone.  I try not to whine.  But if I think that people don’t understand what a chronic disease has done to me, there must be others out there who feel that way, too.  My hope is that eyes will be opened to what life is really like for people (and their families) with major health issues.   With understanding comes compassion toward our struggles and acceptance of our limitations.

Thank You, Cheryl, for allowing me to share this and I admire you so for all that you do to raise awareness to this disease!  Please visit Cheryl's page, Day By Day with Pulmonary Fibrosis on FaceBook at:  http://www.facebook.com/pages/Day-by-Day-with-Pulmonary-Fibrosis/302280633161899

Between A Rock and A Hard Place -Dan Mathis

As a person who has Pulmonary Fibrosis and is an advocate for spreading awareness of the disease, Dan Mathis shares his frustration of its impact upon his quality-of-life as well as the type of  care received from the medical community...

I hate Pulmonary Fibrosis.  Have I told y’all that?  The doctors will not operate on my hips because of the Pulmonary Fibrosis.  The pain doctor will not treat my pain with the medications it will take to help –because of the Pulmonary Fibrosis.  He says he is afraid of me because I have Pulmonary Fibrosis.  What is a person to do?  What?  Go to the ‘street drugs’ to get relief?  What?  Go ahead and go into hospice in order to get help?  What?  What?  What???  ~Dan Mathis

Dan's concern is not an isolated incident.  There are many folks who do not qualify for a double-lung transplant in order to save their lives.  Whether due to their age, other ailments, financial or logistical concerns; or all of the above.  Some, such as my hubby, decide that they would prefer to try to manage their disease and live out the remainder of their lives with the quality that they have become accustomed to.  I remember when my husband decided not to get a double-lung transplant; the patient advocacy group that was assisting us essentially explained to us that if he was not going to pursue the only viable option for survival, they would recommend hospice.  It was the right thing for them to do, although explaining this to my husband was quite difficult. 

There are so many emotions that come from the decision making process of going into hospice.  Essentially it is coming to terms that the medical community does not believe you will get better or live for more than six months.  On the other hand, one will receive all the medications it takes to be comfortable, as that is the primary goal -making the patient comfortable and meeting their current needs.  When I discussed this with my hubby, I remember telling him that just because he goes on hospice does not mean there is a time limit on his life, although it would allow him whatever he needs in order to have a good quality of life while he is with us.  Such a heart wrenching thing to think about.  Thank You, Dan, for allowing me to share this.