Tag Archives: National Jewish

COPD – the beginning. Pain – the end

COPD (Chronic Obstructive Pulmonary Disease) is not painful.  We simply cannot breathe easily.  Some of us are on supplement oxygen – others chug along noisily, some less noisy.

“Question: Is having pain in the lung typical of COPD?

Answer: Chronic lung pain is not commonly associated with COPD. However, pain can come from the wall of the chest and not directly from the lungs – this in fact can be seen in COPD. Pain in the chest can come from coughing very hard and straining the muscles of the chest. Pain in the chest can be due to a rib fracture from coughing hard. Pain in the back of the chest can come from osteoporosis, or thinning of the bones. Check with your healthcare provider to find out the cause of your pain. If you have new chest pain, or have pain that frightens you, call 911 to go to the emergency room at the nearest hospital.”


The problem for some of us is that COPD leads to other stuff – some of it painful – none of it desirable.  That is where I am – I have gathered a bunch of other stuff since my 1997 stay in Harrison Medical Center.

Do to inattention at putting on my stockings when I needed to – timing is crucial – the Cellulitis/Lymphedema is back and trying to heal.  It should have healed by now.  A brief stay in Harrison gave a great jump-start of healing my left leg but the healing has been set back and that means the pain is unrelenting.

A problem seems to be that the long homemade brush had an end tied cord that caught in the bristles of the soft baby brush and ripped the half healed sores open when I was in the shower to gently cleanse the wounds before my husband wrapped them again.

I did not know why it was so painful until I lifted the brush to rinse it and saw the cord end stuck in the soft bristles. I have recut the length of the cord so it cannot happen again.

Pain overtakes a life – it has taken over mine…and no blame except to me.   It has been over a year since my legs got bad and lymph fluid wept and the ‘blame’ is my own doorstep.  I let other stuff get in the way of getting my stockings on. I dropped the ball – as it’s turned out – on my own left foot.

I have never liked taking pain pills for any reason but for a lung patient – it is harmful.  Trouble is, right now – I do not care.  What good is saving your lungs when pain keeps you awake and in agony?  Crying in pain chokes off my airway and I still my mind to focus on deep breathing.  I take a pain pill to sleep and I take a pain pill to endure being awake waiting for my leg to heal.

Should I be afraid of becoming a drug addict?  At this point, I’m more afraid of not wanting to wake up to another day of the same pain.

Funny how drug abuse by drug addicts shut down pain relief for people who medically need it.  Doctors become afraid to prescribe pain pills for fear their patients will become addicted….and patients become afraid to take it.

Read the latest policy by the state – to track:

““Having a patient’s prescription history gives prescribers a more complete view of patient care when they prescribe or dispense controlled substances,” Washington State Secretary of Health Mary Selecky said in a press release. “This new service is another tool for patient care and safety.””

Read more: http://pugetsoundblogs.com/kitsap-crime/2011/10/14/state-to-begin-monitoring-prescriptions-for-pain-medication-in-2012/#ixzz1cT5a9dJ1

Josh Farley’s “State to begin monitoring prescriptions for pain medication in 2012” article is timely.

The only people tracked here are medical patients and their doctors.  The druggies and drug dealers remain in a dark, untracked place of anonymity.

If doctors are leery of writing scripts for pain medications for their patients – what will happen to those patients forced to endure unrelenting pain?

Yes, Josh – I think this is an invasion of people’s privacy.

Thanks for reading…. Sharon O’Hara

$150,000. Yearly Lung Drug for One Patient. P.S. Does It Work?!

When is COPD not COPD?
Why does a special group measuring only 1% of all COPDers (4th leading cause of death in the U.S), get a drug costing $150,000. Per patient, per year and ongoing research. while the other 99% of COPDers get – nothing.in research dollars?

A regular COPDer should pray they turn into one of the 1% group – because there is help out there for that 1% COPD.
The two national COPD support groups were organized and are run by the same 1% group of COPDers. – alpha-1 folks..
Why the discrepancy in treatment interest by a leading respiratory hospital?

COPDers…it is NOT OKAY that a small group of us gets research dollars into real treatments for their COPD (keeps their FEV1 from dropping the study disproved)
The fact is my FEV1 numbers stayed the same for years WITHOUT a $150,000 drug.

We seem to be funding this gross negligent misuse of public funds on a small group of folks while nothing is helping the other 99% of us….no research.

National Jewish is the leading respiratory hospital in the country and has been for 12 years.
I went to their website and looked up the different statements re: alpha-1 and regular COPD.

I then called National Jewish to ask them to tell me what – specifically- they are doing for COPDers…the other 99%. They – literally – had nothing to say. I listened to silence until I quietly put down my phone.

I will ask again. Why the emphasis on research for the 1% group?

Okay – I will ask. If alpha-1 is genetic – is the majority of the people who have it Jewish?


Alpha-1 Antitrypsin Deficiency Program

Alpha-1 Antitrypsin Deficiency (sometimes shortened to Alpha-1) is a hereditary condition that can cause liver disease in infants, children, and adults and can also lead to lung disease in adults.

National Jewish Health is one of the best places in the world to be treated for the adult lung and liver disease caused by Alpha-1. Our doctors have every necessary tool at their fingertips to diagnose and treat this condition. While we do not treat infants or children with Alpha-1 liver disease, we have a close working relationship with The Children’s Hospital in Denver and will make a referral to the appropriate pediatric liver specialist.

Alpha-1 is one of the most common inherited disorders and accounts for about 1 percent of all COPD (chronic obstructive lung disease) in the United States. Research is constantly being done to develop new therapies. Doctors at National Jewish Health have been involved in virtually every new drug evaluated for Alpha-1.

Currently trials are underway or planned to evaluate inhaled therapies and gene therapy for the condition. Our doctors and researchers are always looking for new ways to manage and treat Alpha-1 and other chronic lung diseases.

Doctors at National Jewish Health follow one of the largest groups of Alpha-1 patients in the world. The program here has been devoted to the care of families with Alpha-1 since 1981.

Since Alpha-1 is a genetic condition, we invite all immediate family members to participate in the initial visit, if possible.


COPD Program
The COPD Program offers comprehensive, individualized care for people with chronic obstructive pulmonary disease (COPD) including emphysema and chronic bronchitis.

As the region’s only full-service program, our goal is to help patients manage their disease effectively and to live full and active lives.

The COPD Program offers:
• Unique, collaborative approach proven to enhance quality of life.
• Personalized care plan and individualized take-home binder for every patient.
• Cutting edge diagnostic testing and latest treatments for COPD.
• Nutritional counseling.
• Specialized pulmonary and physical rehabilitation programs.
• Personalized education and group classes.
• Behavioral health and psychosocial services.
• Evaluation for potential lung volume reduction surgery (LVRS) and lung transplant.

Dedicated Team of Experts
The COPD program team of specialists are dedicated to the goal of helping people with COPD “take charge” of their breathing and regain or maintain control of their lives. We are here to partner with you to manage your lung disease in the best way possible. People with COPD can lead active and full lives.

At each visit, you will meet with physicians and/or nurse practitioners who are experts in the field of COPD.
A comprehensive personal COPD plan will be created. This plan will help you manage your COPD, with a focus on maximizing your respiratory health through education, rehabilitation, nutrition and medications. We will consider any other medical conditions or special needs you may have, and you will have appointments with other healthcare professionals. They will address medical and lifestyle issues that impact your quality of life.

More later… Sharon O’Hara