Tag: IPF

Chloe Temtchine – A very brave and creative young woman – PVOD cf IPF

As a ‘senior citizen’ man battling to stay alive with IPF I found this story moving and inspiring – it concerns a singer – Chloe Temtchine who is facing PVOD.

Annette Insdorf’s excellent article about Chloe is in The Huffington Post –

The article starts;

In February of 2013, singer was completing her album, No Pressure — produced by Grammy nominee, Greg Camp — and preparing the international promotional tour. Then one day she was rushed to the emergency room with congestive heart failure that left her unable to breathe, and barely alive. She was later diagnosed with PVOD, a rare and often fatal pulmonary disease.

The 30-year-old New Yorker was given a slim chance of recovery. But this past Thursday night at Chelsea Piers, Chloe Temtchine was back onstage, a portable oxygen tent by her side and a thin breathing tube in her nose. She amazed hundreds of people with her vibrant voice and soulful songs, performing three numbers that led to a standing ovation.

The occasion was the Pulmonary Hypertension Association’s first annual NYC “O2 breathe” Gala.

Chloe affectionately nicknamed her ever-present oxygen bottle “Steve Martin.”

PVOD is at least as deadly as IPF a median prognosis of around 2 years, 3 years in the case of IPF.

…… 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.

Both PVOD and IPF are designated as rare diseases.

You will get an idea of the complexity of this area of 200+ diseases from this site – http://www.pulmonaryfibrosis.org/life-with-pf/about-pf

I have clipped a few sections.

See particularly the diagram below;

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 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.

Autoimmune diseases – From http://www.pulmonaryfibrosis.org/life-with-pf/about-pf

  30/03/2015

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)

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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. It is important to discuss the potential risks and benefits of genetic testing with a qualified genetic counselor and your medical provider. To speak with a Certified Genetic Counselor free of charge, contact Janet Talbert, MS, CGC at 800.423.8891, extension 1097.

CLASSIFICATION OF COMMON INTERSTITIAL LUNG DISEASES

Symptoms

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

RP – The ones I have big time are the first 3 – but not the last two!

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Pulse Oximetry

A “pulse oximeter” is a device placed on the fingertip or earlobe that indicates the amount of oxygen in the blood. Normally, nearly all of your red blood cells are full of oxygen. When all the red blood cells are carrying oxygen, the blood is called “100% saturated.” A normal saturation level is between 95% – 100% when the test is performed at sea level. Low oxygen saturation values can help your medical professional identify the presence of lung disease. Early on in PF, oxygen levels may be normal while you are resting, but can decrease while exerting yourself. This drop in oxygen saturation (called “de-saturation”) can make you feel breathless. When oxygen levels drop below 89% during exertion, your medical professional may recommend using supplemental oxygen while active.

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GLOSSARY

  • Alveoli: Tiny air sacs in the lungs where carbon dioxide leaves the bloodstream and oxygen enters the bloodstream.

  • Bronchoscope: An instrument used for inspecting the airways of the lungs.

  • Comorbidity: A disease or other medical issue that occurs simultaneously with PF.

  • Diffuse parenchymal lung diseases (DPLD): Another name for interstitial lung diseases.

  • Diffusion capacity (DLCO): A measure of the ability of oxygen to diffuse into the bloodstream.

  • Dyspnea: Difficulty breathing or shortness of breath.

  • Exacerbation: An episode of rapid decline or the emergence of more severe symptoms.

  • Fibroproliferation:  Relating to the growth of fibroblasts (and fibrous tissue), one of the basic connective tissue cells.

  • Fibrosis: An increase in fibrous scar tissue.

  • Forced expiratory volume (FEV1): The amount of air you can blow out in one second, which is measured by spirometry.

  • Forced vital capacity (FVC): How much air you can blow out of your lungs, which is measured by spirometry.

  • Gastroesophageal reflux disease (GERD): A regurgitation of stomach acids into the esophagus and throat, causing heartburn, acid indigestion, and possibly injury to the lining of the esophagus. This is also called acid reflux disease.

  • Hospice care: Palliative care for patients at end-of-life.

  • Idiopathic: Of unknown cause.

  • Idiopathic interstitial pneumonias (IIP): A type of interstitial lung disease. Idiopathic pulmonary fibrosis is a type of IIP.

  • Interstitial lung diseases (ILD): A broad category of over 200 lung diseases that affect the lung interstitium.

  • Interstitium: The space between the alveoli (air sacs).

  • Palliative care: Non-curative therapy that treats symptoms and focuses on improving quality of life. It can be received at the same time as curative therapy.

  • Pathologist: A physician specializing in disease-associated changes in tissue and organs. Pathologists aid in making a medical diagnosis.

  • Pulmonary: Relating to the lungs.

  • Pulmonary hypertension: Abnormally high blood pressure in the pulmonary (lung) arteries.

  • Pulmonologist: A physician specializing in the lungs.

  • Radiologist: A physician specializing in using radiology tests(e.g., X-rays) to diagnose illness.

  • Rheumatologist: A physician specializing in rheumatic diseases, which may include arthritis, autoimmune diseases, and joint diseases.

  • Spirometry: A test that measures the amount of air inhaled and exhaled over time.

  • Usual interstitial pneumonia (UIP): A specific abnormal radiologic or pathologic pattern of interstitial lung disease.

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Can you get healthier & less fat this way?

(Picture from ‘Obesity’ in WikiPedia)

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Whether you have a serious illness such as this HERE or are simply overweight and feeling dreadful this approach is supposed to help – see Dr Mercola’s article – HERE

The summary is:-

  • It’s long been known that calorie restriction can increase the lifespan of certain animals. More recent research suggests that intermittent fasting can provide the same health benefits as constant calorie restriction, which may be helpful for those who cannot successfully reduce their everyday calorie intake
  • “Undernutrition without malnutrition” is the only experimental approach that consistently improves survival in animals with cancer, and extends overall lifespan by about 30 percent
  • Both intermittent fasting and continuous calorie restriction have been shown to produce weight loss and improve metabolic disease risk markers. However, intermittent fasting tends to be slightly more effective for reducing insulin resistance
  • Besides turning you into an efficient fat burner, intermittent fasting can also boost your level of human growth hormone (aka the “fitness hormone”) production by as much as 1,200 percent for women and 2,000 percent for men
  • Intermittent fasting can improve brain function by boosting production of the protein BDNF, which activates brain stem cells to convert into new neurons and triggers other chemicals that promote neural health. This protein also protects your brain cells from changes associated with Alzheimer’s and Parkinson’s disease, and helps protect your neuro-muscular system from degradation

New Group ‘Wisdom Questions’, St Augustine and Perennial Philosopy

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‘Wisdom Questions‘

 

“Wisdom is the faculty of making the use of knowledge, a combination of discernment, judgement, sagacity and similar powers. If knowledge is the accumulation of facts and intelligence the development of reason, wisdom is emotional and spiritual discernment. More than knowledge, it is the right application of knowledge in moral and spiritual matters, in handling dilemmas, in negotiating complex relationships. Wisdom is nine-tenths a matter of being wise in time. Most of us are often too wise after the event! It is insight into the heart of the matter.” Wise people see beyond the facts and figures. They avoid problems before they occur. Wisdom is gained through experience, patience and listening.       Definition by Evan Owens CEO of CentreSource – HERE

Some questions to ‘kick-off’

 

Does anyone want to make out a case for the wisdom of woman being different to, or the same as, the wisdom of men?

 

Is science the only method for connecting to reality?

 

Do the great wisdom traditions really teach the same about what it is to be wholly & fully human – in the world with others – in relation to the mysterious Whole?

 

Are the arts a means to reality – or just self indulgence?

 

If we base the education of our children on whole-person leaning might they contribute toward a better world?

 

Do we agree with Evan Owens in his definition (see above) ?

 

 


Are (some) children wiser than many experienced adults – if yes why & how is this?

 

Some friends and I are starting a new group – both locally in Brighton and online.  Online details below.

 

The suggested group title is a play on a) the wisdom we have (should) question – ourselves, our world and reality – AND we can have fun, enjoyment and learning in framing questions to ask of ‘our accumulated, or realized, wisdom’!

 

THE WIDER CONTEXT OF PERENNIAL PHILOSOPHY

 

Here is an ancient poetic summation of the state of being human, and implicitly of The Perennial Philosophy –  from the Bhagavad Gita;

 

“Like two birds of golden plumage, inseparable companions, the

individual self and the immortal Self are perched on the branches of the

self same tree. The former tastes of the sweet and bitter fruits of the

tree; the latter, tasting of neither, calmly observes.

 

“The individual self, deluded by forgetfulness of his identity with the

divine Self, bewildered by his ego, grieves and is sad. But when he

recognizes the worshipful Lord as his own true Self, and beholds his

glory, he grieves no more.”

 

This so beautifully describes …. well what do you think?

 

Stunningly just yesterday I discovered that St Augustine wrote……….

 

“The fact, which is now called the Christian Religion,” he boldly says, with the earlier Apologists, “existed among the ancients, and was never lacking from the origin of the human race.”  –

C C Martindale SJ –  SOURCE

 

 

Those who want to dig deeper can compare the above two quotations with the contemporary re-presentation of Perennial Philosophy in Aldous Huxley’s The Perennial Philosophy or Eckhart Tolle’s The Power of Now or Stillness Speaks – or Ken Wilber or Karen Armstrong, or Wayne Teasdale, or Thich Nhat Hanh, or Thomas Merton or Shaikh Helminski etc. – each I suugest speaks in different language and cultural clothing but teach the same message?

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This is St Augustine not me! –  Lol

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Picture source and helpful list of facts on Augustine & Aquinas by Jeffrey Hays – HERE

 

 

The ‘Wisdom Questions group ON-LINE

 

My contributions to this group’s interests will go to my general blog – https://sunwalked.wordpress.com/ – along with my other core projects

 

1 whole-person learning,
2 photographic art,
3 social justice,
4 inter-spirituality
5 transforming IPF, idiopathic pulmonary fibrosis into something life-enhancing

 

i.e. https://sunwalked.wordpress.com/ is a metablog of all my blogs

 

however the dedicated site for Wisdom Questions and inter-spirituality is – http://universalistspirit.wordpress.com/ – you can comment on or add ‘gems’ to either or both!

 

 

All good wishes

 

 

Roger