21 posts tagged “Pulmonary fibrosis”

Global PF Awareness Month: An interview with Dr. Cosgrove from the Pulmonary Fibrosis Foundation

Posted September 26th, 2016 by

September is Global PF Awareness month, and a few weeks ago,  members of the PatientsLikeMe PF community helped us kick it off by sharing in their own words what it’s like to live with this condition. The month is winding down now, so we caught up with our partners at the Pulmonary Fibrosis Foundation (PFF) to learn more about the latest research as well as a new national registry for PF patients. Below, check out our recent interview with Dr. Gregory Cosgrove, Chief Medical Officer at the PFF, and see what he has to say about the future of PF treatment.

Tell us a little about the Pulmonary Fibrosis Foundation— how did you get started with it?

I feel very fortunate to be a part of a team of dedicated medical experts, staff, and volunteers who devote their time and effort to advancing the Pulmonary Fibrosis Foundation’s (PFF) mission. Two brothers, Albert Rose and Michael Rosenzweig, PhD, founded the PFF in 2000 after losing their beloved sister Claire to PF. Both brothers were also diagnosed with the disease and subsequently passed away. Their vision and dedication continues to inspire us to support the Foundation’s mission to mobilize people and resources to provide access to high quality care and lead research for a cure so people with pulmonary fibrosis will live longer, healthier lives.

Since 2014, I’ve had the wonderful opportunity to serve as the Chief Medical Officer (CMO) at the PFF overseeing medical affairs to help facilitate and drive key initiatives. In that time, the Foundation has worked with the pulmonary fibrosis medical community to establish the PFF Care Center Network (CCN), where people living with PF can find experienced medical professionals who understand their disease and support services to improve the quality of their lives. Simultaneously, we launched the PFF Patient Registry and were thrilled to announce in March that we began enrolling patients. The PFF Patient Registry collects and stores clinical data, biological samples and high-resolution CT scans of patients with all types of PF. This combination of data from so many patients, including those with less-studied forms of PF, will have an enormous impact on future research.

What are your thoughts on the current state of idiopathic pulmonary fibrosis research?

 I’m very encouraged about the way we’re moving forward to assist patients, and the collaborative research that’s being developed. The momentum we’re achieving with two approved therapies for idiopathic pulmonary fibrosis (IPF) has further stimulated the field, motivated researchers, physicians and patients alike. The Pulmonary Fibrosis Foundation’s PFF Care Center Network and the PFF Patient Registry enhances access for patients who wish to participate in research and ensures that they are able to do so in a safe, secure environment. The PFF has developed a network of 40 CCN sites across the country. We hope that closer and more accessible care and an engaged and collaborative medical community will ultimately result in more quickly delivered, expert and comprehensive treatment for patients with PF.

 The PFF recently launched a national registry for pulmonary fibrosis patients — what does this mean for future research?

The PFF Patient Registry is an important, comprehensive research tool available to help us in our fight against PF. The Registry is a database of de-identified (made anonymous) medical information, collected at participating CCN sites and gathered from at least 2,000 people living with PF. Together, the CCN and Registry will become an unparalleled resource for future research focused on developing treatments for PF.

 Can you tell us more about the PFF Care Center Network and how it might benefit members of PatientsLikeMe’s IPF community?

The PFF Care Center Network (CCN) is a consortium of academic medical centers and community-based clinics with expertise in caring for patients with PF and a commitment to improving the lives of those with the disease by providing the highest quality care. In addition, CCN sites offer numerous support and educational opportunities for patients and their families including resources and medical expertise for local support groups, PFF educational materials and an annual educational event.

September is Global Pulmonary Fibrosis Awareness Month and we encourage the members of the PatientsLikeMe IPF community to spread the message to family, friends, healthcare professionals, colleagues, neighbors, community leaders and others. To learn more and get involved, visit our website and download our online toolbox.

The opportunity to serve as CMO really is a unique chance to make a valuable contribution to this field and improve the lives of many individuals. I am hopeful that the PF research community will be successful in identifying treatment(s), and eventually a cure.

From your perspective, what is the PatientsLikeMe / PFF partnership all about?

Through this partnership, the PFF is able to offer the unique tools that PatientsLikeMe provides through its website to the PF community. The Foundation is looking forward to providing even greater patient engagement and improved outcomes thanks to this collaboration.

 


“You may not like it, but make the MOST of it.” – An interview with IPF member Nikki

Posted January 1st, 2016 by

When Nikki (Nimiha) was diagnosed with IPF in 2010, she was already a survivor of both ovarian cancer and a heart attack. Staying positive and up-to-date on new information is now this retired RN’s best defense – and she’s been sharing it with her IPF family on PatientsLikeMe since March.

We had the chance to connect with her recently, and here’s what we learned …

1. Tell us about your life. What are your hobbies and interests? How do you most enjoy spending your time?

I was born 71 years ago in a town named Escondido, in Ca. My mother had been a Wave in the Navy in Washington, D.C. where she met my father, a career Marine. It was war time and he was transferred to Camp Pendleton Marine base in Oceanside, where he was immediately sent overseas to fight. I was an only child with no family living close by so my Mother and I were very close. My father went up through the ranks and was up for Brigadier General, and was honored to take over training the 7th Marines at Camp Pendleton in 1962. Two weeks later he died of a heart attack and my mother and I were forced to change our lives as well as our homes and lifestyle. She moved us to a town ten miles from where I was born. I went to college at PALOMAR Jr. College where I majored in boys. I married my husband, George, in August of 1963, and became a mother June 1964. You know the plan to wait a few years just didn’t work for us. You remember I said I majored in boys. Seems I didn’t know how to count and messed up the birth control pills ‍‍. I became a stay at home mom and our son was born four years later. Amazing how quickly you learn to count when needed. As my children grew, I became restless and went back to school. I discovered I wanted to become a nurse and take care of others so that was what I did. The kids were growing up and we were all going to school. I graduated with my R.N. in 1979 and became an oncology nurse specialist. That progressed to orthopedic nurse, home care nurse, then a MDS coordinator. I retired in 1996 after my son became ill with testicular cancer. He healed, my father-in-law died, I had ovarian cancer and one Thanksgiving night after everyone went home I suffered a heart attack at 53. During the next year I had seven stents that failed, had a triple bypass and did really well until last year. Then I caught the lingering cold everyone was catching, but mine wouldn’t go away. On my birthday I finally went to the doctor after four weeks. I was placed on ABT’s inhalers, and steroids. One week later I returned unable to breathe. It was at that time I was told they heard crackles and the X-ray showed IPF scarring. I had purchased a cruise to Hawaii for our Christmas present, but was unable to go. I was on oxygen and not feeling better. The 13th of Jan. I was in the hospital with pneumonia. My life of playing bingo, gaming at the casino’s and cruising was over as I knew it. I was still able to read, enjoy my backyard, and the glorious sunsets and the multitude of hummingbirds I feed. My life was changed but not over. I was able to enjoy the little things that made me happy. I was lucky to have my husband of 52 years with me, my daughter and my ten-year-old grandson as well. They are all my daily blessings and sources of enjoyment. Don’t get me wrong, it is not always sunny, but we are managing, one hour at a time. I have my moments full of tears, but, also joy in the little things. I try to deal with what cards I have been dealt with grace. Some days are better than others.

2. You’re very supportive to others in the forum. In a recent post, you said to another member, “We care, we know, we too are frightened by our diagnosis. Don’t feel alone, that no one cares. We may not be there physically to hold you in our arms, but you have many arms around you that DO CARE.” How have you, in turn, felt supported on the site?

I try to visit the site on a daily basis and interact with my family here. If they don’t post for a while I fret and worry. They fill my need to help others to help myself. This place is my safe place. I truly believe we are family and here to help each other. I am free to tell those who understand how miserable it is on some days. They understand and perk me up with their prayers and responses. I love that we are free to share everything or nothing. This is another part of home!

3. As a former RN, how do you think your past experience informs the advice you give to others?

Most often I have to censor myself because of my prejudices toward the medical profession today. I feel I know enough to give good information and resources if needed. I am not afraid to tell it like it is. We are not here for the fairytale version of what is happening to us. We are here for truth and knowledge that what we feel is normal or not. I listen to everyone and what they say to learn for myself. I hope they can feel the love that is offered even though there is such little hope at this time. I think the main thing I give is knowledge and comfort. At least I hope so.

4. Tell us about your diagnosis. What did you do/feel in the moments following it?

Like I said, it was very sudden when it finally showed up. A few years before before I was symptomatic, it was mentioned and I recall ignoring it, saying we would worry about it when we needed to. I was breathing and living a normal life and was truly not interested in it since it was incurable and not affecting me at the time. I think I knew last year when I was diagnosed my easy time was gone. I never wondered why me, never got mad. Why not me! I think what has affected me most is I promised my grandson to take him to see the glaciers in Alaska. I cannot afford the medical supplies that includes any longer and I hate that I didn’t take him sooner. I would love to book a cruise right now, but can’t afford to lose all that money if I get worse. I investigated it earlier last month and renting the portable concentrators that go high enough and the extra batteries and the scooter make it seem so much like a dream. I think the day I realized my dream to see my grandson’s face when he saw Glacier Bay and the calving was over was the day I felt the worst. I felt my dream die and even now it brings tears to my eyes and pain to my heart. My advice to my friends and family here is do what you need to do while you still can. Don’t let this disease kill your dreams if you can still do them. DO THEM IF YOU STILL CAN.

5. How would you best describe the feeling of living with IPF to someone who doesn’t have it?

I find it can be overwhelming depending on the day and what you want to get done. I am no longer independent and able to plan ahead. I need help with shopping because the cart won’t hold my oxygen and the weeks worth of groceries. I spend several days visiting different doctors every week between me and my husband, rather than going out to do what I want. I look good, feel pretty good for all that is wrong with me, I just can’t breath good. I tend to tire more easily than before and sometimes it is hard for people to understand. Like I say, I look well just sitting there with the cannula and oxygen tank or 50′ of tubing I walk around the house with. I have a love hate relationship with the oxygen. I am grateful for it making my like livable, but hate the way it looks, the constant noise and the dry nose and mouth.

Most people don’t know anything about IPF. I TELL THEM IT IS A TERMINAL DISEASE WHERE YOUR LUNGS QUIT EXPANDING AND COMPRESSING. They have two new medicines that may help prolong life with a better quality. Nothing out there to my knowledge will cure it. A lung transplant is a possibility for some but not me. I have already had my chest cracked when I had my bypass. I am too old and too fluffy to get one. So I live each day the best I can.

6. What advice would you give to a newly diagnosed person?

TALK, JOIN, DISCOVER ALL YOU CAN. THIS IS YOUR LIFE, KEEP UP WITH NEW INFORMATION. MOST OF ALL LOVE YOURSELF AND BE HAPPY YOU CAN CHANGE THINGS TO MAKE THEM BETTER with your attitude! You may not like it, but make the MOST of it.

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