Since You've Been Gone~ 4 Years

Hey Babe,

It is hard to believe that 4 years have passed since you left us.  In a way, I know your not very far away and I can feel your gentle support as I make my way through life.  

When you first left, I remember sleeping.  I slept as I never had and someways, now that I think about it, I probably sleep-walked through the entire first year.  It was probably my body's way of recovering.  As time passed, I, then had trouble sleeping without you.  Staying up to the wee hours of the night and awakening before dawn.  Each day was always a reminder that you were not there.  

I made it a point to take road trips.  Less about the destination and more about the desire to prove to myself that I was a capable woman.  During the second year, I got myself a camera.  Nothing too expensive, but it suits me fine.  Since then, my camera has been my little companion.  I have always been creative, but when we went through your illness, I wondered if that part of myself had been lost.  It might sound strange but the camera saved my life.  I enjoy the beauty that unfolds each day and I enjoy the patience of photography. Being still.  

I still have a hard time with what seems like our shrinking family.  My oldest is now out on his own, following his dreams and working hard at it.  The youngest, is a teenager now.  Very thoughtful and attentive, although, as you know with teenagers, that only can go so far as they really need their space.  I try to remind myself not to rely too much on him and to learn to find contentment in my own space.  It is something I work on daily.  It is scary to think that I am completely on my own.  I think the hardest part about it is not being able to share things with another who understands me.  Certain thoughts and experiences to only be kept to myself.  I have found though, there is a beauty in learning to thrive within the serenity of my own soul.  

I have taken a few chances.  Recently, I bought a very old cottage to renovate.  One day, it might be my downsized home.  When I am there, I feel happy.  There is something about having a home that is just mine.  It is the first place that I have owned that I have not shared in raising a family, or as a married person. Lately, I go there and paint on a canvas.  Just simple abstract stuff.  But, again, that is another thing that I stopped doing when we went through your illness. It feels really good to blast music and just mindlessly paint.  It seems cleansing and healthy to me.  

I am trying to make the conscious effort to be a healthy person.  Not necessarily physically, although that is also coming along.  But more about, up here, in my head.  One of the best things I did recently is decide, that I do not want to be a martyr.  Yes, I am a widow, and yes, only you and I know the ways in which I still grieve.  At the same time, I have chosen not to be "In Mourning" my entire life.  It was a personal choice that needed to be made.  Since for whatever reason, I happen to still be walking on this Earth, should I allow my entire existence to be determined by your death?  I want to celebrate in my existence.  For instance, everyday, I have been playing music.  Recently, I started to dance to the music.  Really dance.  To feel my body come alive, to feel sexy, female again, elevated my heart.  I did this without guilt.  I found myself happy for a moment and I have decided that is okay.  I am still here, still ~Breathing.

I love you, Baby.     

Amazing Gift ~Written By Pamela De Loach

You know that moment in the morning before you are fully awake; I listen to my lungs - what a miracle! I can take a deep breath in and realize I can feel the air going in and filling up my lungs and then I can blow out my breath slowly. What an amazing gift!!!!!! Little over four years ago, I was fighting for every breath due to idiopathic pulmonary fibrosis (IPF). Today is my fourth lung anniversary and, as always, my donor is my hero. Today I think of their family and I hope they realize what an amazing person their loved one was and the fact they saved my life and perhaps the lives of others. What a gift they gave my family!! It’s still sad to think they left our world but left behind amazing gifts and allow others to live on. The best way you could help me celebrate this anniversary is make sure you are a donor. My family, doctors and friends are my greatest support system. Thank you all.

 ~Pamela De Loach

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

Check Your Status~ Single? Married? Or, It's Complicated Grief?

If your like me and not sure which status to check, I found an interesting article that may add some helpful insight. ~Breathing

http://www.mayoclinic.org/diseases-conditions/complicated-grief/basics/definition/con-20032765

Pulmonary Fibrosis and Panic Attacks

Over the years, I have heard many people with Pulmonary Fibrosis mention that they experience severe panic attacks.  It seems understandable that this would occur because many have difficulty breathing as part of their illness.  When I Google or look up panic attacks, many of the writings are geared toward people who generally have these experiences, but I cannot find much in writing or resources that specifically deal with this occurring while on oxygen and having a terminal illness.  

Though panic attacks can be severely debilitating, it seems that much of the literature indicates to face the fears you have and realize that the percentage of them actually coming true is very low.  With Pulmonary Fibrosis, I think this does not apply, as often the source of the panic has to do with the fear of not getting enough air, which is a very real scenario to PF patients.

I remember my husband experiencing quite a few of these attacks.  Some where quite severe.  He would flail his arms in desperation of getting more O2, but in reality, he was pulling the O2 out of his nose and knocking down canisters.  Another time he was so desperate for more air, that although he had a portable O2 container turned on and in his noes, that he picked up the portable and began trying to suck air out of the handle itself.  It was very heartbreaking to see.

As a caregiver going through this with him, I had to learn to keep calm and be very deliberate in my voice and actions.  No rushing, although he was in panic mode, I could not allow myself to rush about the room. Why?  If his surroundings were chaotic during these episodes, it only made the situation worse. If he could not be calm, then I had to for the both of us.  

Touching him during this time had to be thought out.  Rather than rubbing his back, I would place my palm flat on his back and hold it still.  Everything had to come down a notch, including my voice.  Speaking in a low, soft tone can be more helpful rather than an elevated voice.    

Helping him to focus assisted in bringing down the heightened nature of a panic attack.  If he was scared he didn't have enough air, I would put the pulse-oximeter onto his finger for both of us to check it.  Getting him to look at it helped gain focus.  If his SAT's were low, I turned up his O2 and gently let him know they will start rising soon.  Let's watch them rise together.  

These attacks sometimes came during a coughing episode, or would bring a coughing episode on.  By the time they passed, all of his energy was spent.  It took so much out of him to go through this.  I wanted to minimize this happening and looked at the different scenarios in which they occurred in the past.  I tried to notice patterns.

I noticed that many of them occurred before his showers.  Showering becomes a difficult task for someone with PF.  The moisture and steam in the air, the use of your arms to lather, the slipperiness of the tub, the water on the floor, the energy used to dry off, all become monumental.  There was no such thing as a quick shower anymore.  Understanding that and blocking out an appropriate amount of time eased the task.  As a caregiver, making sure everything was ready for him also helped.

We were provided a slew of drugs while he was on hospice. One of them was a liquid dose of Larazapam.  This was specifically provided to ease anxiety.  In this form, it did help but was something that worked in only the short-term and the dose might be given several times a day, depending on what kind of a day he was having.  At first, when all this was new to us, we administered a dose during his panic attacks as a way to help him calm down.  As time passed and we recognized the patterns of his panic attacks, we realized that the best time for him to take this was prior to his shower.  Before he felt the anxiety.

Everything we did had to do with preventing them in the first place.  Thinking ahead of any given situation, allowing the proper amount of time and preparing in advance seemed to help the most.  As he changed, we were flexible enough to change the preparations to assist his needs.

Everybody is different.  One thing I noticed and found rather unexpected, was that Morphine worked the opposite than what we thought it would do.  We thought it would help with his pains and help him to relax.  It did help with pain, although I noticed a pattern with that as well.  His form was a liquid Morphine taken orally.  At first administration, he would become somewhat sleepy, so we found that, for him, taking it after a shower and lunch would allow for a nice little nap.  I noticed that after an hour or two, he would become restless in his sleep and literally wake up in a panic.  While he was at this period, he suddenly felt he needed 5 things all at once and at first, not seeing the pattern of his reaction to this drug, I would run around the room trying to satisfy his every need.  It took a little time to recognize this pattern and having something soothing for him when he awoke, such as a cup of tea, seemed to decrease this.  

I have also read that certain foods may increase the possibility of panic attacks.  Too much sugar or caffeine might bring them on more frequently.  

Much of this is written from a caregiver's standpoint, yet, there are many people with PF who experience this and do not have any assistance.  This can be very frightening.  It might be a good idea to visit with your doctor to discuss these attacks if they are too frequent, or preventing you from daily enjoyment.  My husband was not on an anti-depressant, although some people say that this has helped them a great deal. Having a phone near-by or discussing this with your friends or family may give you additional support.  Of course, learning to change your focus from what is causing the panic to something else would help, but is one of the hardest things to do.  

Here are some links that may provide further insight (I will put a question mark after each topic, because not all of these will be helpful to everyone, but, maybe there is one for you.)  Be sure to speak with your doctor regarding any questions you may have before starting medications or natural supplements.  

Meditation? 

Harvard Yoga Scientists Find Proof of Meditation Benefit - http://www.bloomberg.com/news/2013-11-22/harvard-yoga-scientists-find-proof-of-meditation-benefit.html

Tea?

Best Teas For Stress and Anxiety- http://www.doctoroz.com/article/best-teas-stress-and-anxiety

Points of Focus? 

How To Stop Panic Attacks- http://www.healthyplace.com/anxiety-panic/panic-disorder/how-to-stop-panic-attacks-and-prevent-panic-attacks/

Diet?  

9 Foods That Help or Hurt Anxiety- http://www.everydayhealth.com/anxiety-pictures/anxiety-foods-that-help-foods-that-hurt-0118.aspx

Pharmacy?  

Drug options for treating Anxiety/ Depression- http://www.webmd.com/anxiety-panic/

Herbal?

19 Natural Remedies for Anxiety- http://www.health.com/health/gallery/0,,20669377,00.html

Peer Support?  

Pulmonary Fibrosis Foundation Support Groups-  http://www.pulmonaryfibrosis.org/life-with-pf/support-groups

Can I get paid to be a family caregiver?

In my particular state, I was told in order to receive a wage to be my husband's full-time caregiver, we would have to do two things:  A) get a divorce B) live in separate homes. I really never thought that made much sense. Perhaps, your situation is different. The link below offers some good places to start if you find yourself caring for a loved one.

The Care Givers Space

http://thecaregiverspace.org/blog/paid-family-caregiver/

This site is wonderful for anyone who is a caregiver.  Great information and support, so please feel free to visit them.  

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.

What Would We Do Without Support?

I wonder where I would be without finding the support of someone who understands?  ~Breathing

Find your support group by clicking the link below.  

Support Groups / Pulmonary Fibrosis Foundation

Don't have one in your area?  Contact the Pulmonary Fibrosis Foundation and find out how to get started.  There are also many groups provided online.

Rapid Progressors Speed to End Stage Pulmonary Fibrosis

Article Via; http://www.medpagetoday.com/pulmonology/smokingcopd/5805

Published: May 31, 2007

Download Complimentary Source PDF 

By  Crystal Phend , Staff Writer, MedPage Today

Reviewed by Zalman S. Agus, MD; Emeritus Professor at the University of Pennsylvania School of Medicine

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Action Points

• Explain to interested patients that the study suggests that idiopathic pulmonary fibrosis may affect patients differently depending on gene expression and environmental factors, such as smoking.
• Caution patients that the study was preliminary and further study will be needed before physicians can prospectively determine which patients could experience rapid disease progression.

MEXICO CITY, May 31 -- A difference in genetic patterns may explain why some idiopathic pulmonary fibrosis patients, especially men who smoke, die more quickly after diagnosis than others do.

These rapid progressors were 6.5-fold more likely to be men and seven-fold more likely to have been smokers than slow progressors, found Moisés Selman, M.D., of the Instituto Nacional de Enfermedades Respiratorias here, and colleagues.

In the retrospective study, gene expression patterns differed between fast and slow progressors, implying biologically-distinct phenotypes of the disease, they wrote online in the journal Public Library of Science ONE.

The findings suggest that physicians should pay more attention to the time of onset of symptoms to identify these patients who are at greater risk, they said.

Most idiopathic pulmonary fibrosis patients have symptoms long before diagnosis, then slowly progress, with death coming within five years of diagnosis, they noted.

But, they said, distinct patterns of disease progression have become increasingly clear clinically.

To characterize these patterns, the researchers reviewed the charts of 167 consecutive patients with the disease who were evaluated at a single center between 1995 and 2004. Seven healthy volunteers as well as lung samples from autopsies were also studied as controls for immunohistochemistry, cellular and genetic profiling.

Rapid progressors were defined as those with no more than six months of symptoms before seeking medical attention.

From symptom onset, these 26 patients had a median follow-up of 13.5 months and median survival of 27 months. From diagnosis, median follow-up was 10 months and survival was 25 months.

Slow progressors were defined as those with at least 24 months of symptoms before presentation.

From symptom onset, these 88 patients had a median follow-up of 60.5 months and median survival of 93 months. From diagnosis, median follow-up was 17 months and median survival was 32 months.

In a multivariate analysis, significant factors in survival among the overall cohort included time from symptom onset to first consult, smoking, male gender, and lung function as measured by forced vital capacity.

Among the 80% to 85% of patients with known vital status, rapid progressors had significantly lower survival rates than slow progressors (hazard ratio 9.0, 95% confidence interval 4.48 to 18.3, P<0.001) or intermediate progressors (P=0.045).

Mortality determined from the time of diagnosis also tended to be higher in the rapid progressors (HR 1.5, 95% CI 0.81 to 2.87, P=0.18).

Among rapid progressors, significantly more patients were:

• Male (odds ratio 6.5, 95% CI 1.4 to 29.5, P=0.006).
• Ever smokers (OR 3.04, 95% CI 1.1 to 8.3, P=0.04).
• Current smokers (OR 7.1, 95% CI 1.2 to 40.9, P=0.02)

These rapid progressors, though, were not simply patients presenting at a different stage of disease or an acute exacerbation, the researchers said. Their physiologic, radiologic, and histopathologic parameters were similar to those of slow progressors.

Socioeconomic and educational background -- which can influence when patients seek treatment -- as well as initial treatment were similar between groups, they said. And there were no differences between rapid and slow progressors in pack-years smoked.

Nor were there baseline differences in age, lung function alterations, oxygen saturation, extent of changes seen on high resolution computed tomography, or bronchoalveolar lavage cellular profile, the researchers noted.

Lung biopsies done on 31% of patients showed no differences in baseline morphology for interstitial inflammation, pulmonary hypertension changes, smooth muscle hyperplasia, type 2 cell hyperplasia, or extent of fibrosis or honeycombing.

However, Dr. Selman wrote, there were important differences showing that "rapid progressors appear to represent a distinct biological phenotype among patients with idiopathic pulmonary fibrosis."

In a global gene expression analysis in a subset of patients, the researchers found that 437 genes were expressed differently between groups.

Rapid progressors overexpressed genes involved in morphogenesis, oxidative stress, migration and proliferation, and fibroblast and smooth muscle cell function.

This upregulation was seen on immunohistochemistry for the adenosine-2B receptor, which is involved in a key process of fibrotic remodeling, and prominin-1/CD133, which is found in hematopoietic stem cells and embryonic epithelium.

Furthermore, bronchoalveolar lavage showed that rapid progressors had more than a twofold increase in active matrix metalloproteinase-9, which may contribute to abnormal tissue repair and remodeling, compared with slow progressors.

Rapid progressors also had higher fibroblast migration than slow progressors (238% versus 123%, P<0.05) or controls (238% versus 30%, P<0.01).

While these subgroup studies were of limited size, "the relatively stringent selection of genes, the protein verification by immunohistochemistry on additional samples, and the biological relevance of the genes suggest that our results are biologically meaningful," the investigators wrote.

They also noted, however, that their study was preliminary and limited by retrospective data collection and dependence on patient recall of symptom duration.

However, "taken together with reports of the impact of acute exacerbations of idiopathic pulmonary fibrosis on morbidity and mortality, our results further highlight the variability in the progression and outcome of [the disease]," they concluded.

"These findings may explain, in part, the difficulty in obtaining significant and reproducible results in studies of therapeutic interventions in patients with idiopathic pulmonary fibrosis," they added.

The study was partially supported by a grant from the Universidad Nacional Autónoma de México. One of the researchers was supported by grants from the National Institutes of Health and by a donation from the Simmons family. The researchers reported no conflicts of interest.