36 posts tagged “IPF”

Meeting PF patients where they are

Posted May 8th, 2017 by

Say hello to John (John_R), a father, grandfather and idiopathic pulmonary fibrosis (IPF) survivor. Sound familiar? Last year he shared his story about life after a double lung transplant and the importance of considering a lung transplant early. This year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences.

“I am very passionate about honoring the precious gift provided by my donor family and in living a life worthy of their generosity.”

John received a bilateral lung transplant on January 1st, 2015, and believes he’s alive today thanks to his donor family and care team at UT Southwestern in Dallas. Now, he’s committed to raising awareness for the needs of the pulmonary fibrosis community.

Life after transplant

John’s life before transplant included the use of supplemental oxygen 24 hours a day, and what he calls, “an eminent expiration date” in his near future. He couldn’t visit family in Colorado or the higher elevations of New Mexico due to the altitude, and every breath was a struggle.

“The biggest thing about life after lung transplant is that I no longer have a firm expiration date, I can have hope. I can go to Colorado and attend medical conferences. I can help others by sharing my experiences and the knowledge I’ve gained. I have also learned to cherish the moments that make living wonderful.  A moment of kindness, shared empathy or even a smile mean so much to me now. The rest doesn’t really matter. Life is good.”

Fighting isolation with the help of Facebook

According to John, many people diagnosed with IPF have never even heard of the disease prior to hearing of it from their doctor. Then they learn that their disease has no cure and only a couple of treatments that slow the progress of fibrosis for some. Online research about IPF offers little comfort either. John’s experience motivated him to start an online support group using Facebook Live.

 

“IPF can be a very isolating disease. Your friends and family have never heard of it and you are reminded of your mortality with every breath. In my case, each trip to the pulmonologist was just proof that my disease was progressing. A support group can help with the feelings of isolation and loneliness, plus provide valuable information and hope for the future.”

 

After trying a paid platform to share their meetings, but finding it too difficult for some participants to access, John thought Facebook Live seemed a good option. Once someone has joined the group they get a notification when the support group goes live.

“They are then just one click away from being able to join the meeting and participate with folks who share the same journey.”

Though the Facebook group is new and participation is growing, John hopes that it will help people understand that they are not alone, and that he can provide some valuable information about IPF and lung transplants.

Managing with PatientsLikeMe

“I use PatientsLikeMe to track my data and as a platform to share with others in our community. I can easily view my lung function both before and after my transplant, track my weight loss and ensure I am maintaining a healthy weight, and keep an eye on A1C, cholesterol, and all my medications in one place. PatientsLikeMe has also given me the opportunity to participate in studies and share my voice with the healthcare community.
 

“The pulmonary fibrosis community on PatientsLikeMe was my anchor when I was coming to terms with my IPF diagnosis, and continues support now that I’ve had a transplant.”

 

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“I thank my donor every day for this gift”: Member Laura shares her lung transplant story

Posted March 17th, 2017 by

Meet LaurCT, an active 2015-2016 Team of Advisors alum living with idiopathic pulmonary fibrosis (IPF). She underwent a left lung transplant at Brigham and Women’s Hospital in Boston in January and recently shared her experience with us.

How are you feeling these days? 

I am feeling great. I’ve had a couple bumps in the road but nothing that the transplant team hasn’t seen before, and [they] handle it immediately. It was scary for me but the team is great in communicating that these [post-transplant] issues happen to some and not to worry. I like that communication because it sets my mind at ease.

How long had you been a candidate for a lung transplant? 

I was evaluated at Brigham and Women’s Hospital (BWH) in January of 2014 and accepted into their transplant program. At the time, I was classified as too healthy to be listed, however I was being watched and met with them every four to six months. In October 2016, BWH suggested I be re-presented and get listed on UNOS (the United Network for Organ Sharing waiting list) for a transplant. After finishing some additional testing, I was listed in Boston Region 1 on December 16, 2016. I also finished the evaluation process at New York Presbyterian Hospital/Columbia around the same time and about December 8, 2016, I was listed on their regional UNOS list for a transplant.

You shared in the forum about having a “dry run” in December 2016, when you were called in as a backup candidate for a transplant but the lungs went to another person. How did you feel when that first call fell through for you? 

As I said in the forum, my daughter and I went to NY Presbyterian with no expectations. While driving, we were calm and I think we both knew this would be a dry run. We didn’t even really call anyone to let them know we were heading there. It gave me comfort to know that the person who needed those lungs the most got them. Many times the lungs are not usable and these are now breathing in someone’s body, giving him or her the gift of life.

What was it like to get “THE CALL” again, leading up to your actual transplant? 

January 6 was a difficult day for me emotionally. We terminal patients have those days, accept them, then put on a happy face for our loved ones. My daughter made supper (not a usual thing – haha) and we were just about ready to sit down to eat. It was 5:30 p.m. My phone rang and without looking at it, we knew. My daughter got up and went upstairs to get ready as I was answering the phone.

I was a primary [candidate] for a left lung, and we knew in our hearts this was it. We headed to Boston immediately. I headed into surgery at 11 a.m. on January 7, 2017. While I was in surgery, my daughter received a call from NY Presbyterian saying they had a lung for me. That rarely happens, if ever. My journey was meant to begin on January 7 at BWH. That was the day there was a 25-car pile-up on the way to New York. I would have never made it in time [for the transplant there].

Can you share some more of your transplant surgery experience with us?

I know that when I woke up after surgery I did not have any pain – I still have not had any pain. They put me on .5 liter of oxygen after, and when I woke in ICU, I took it off. I was breathing on my own from the beginning. My surgery finished at 5 p.m. (ish) on January 7. I did everything they told me to and was released to go home on January 13. Six days after a left lung transplant. This was meant to be.

 

What has been the most difficult or surprising part of your recovery? 

I had a couple of bumps in the road but those were nothing. I need to stress that the most difficult part is the emotions for me and for my caregiver. We don’t stress the caregiver enough. As my daughter said, the prednisone has turned her 66-year-old mother into an adolescent child at times. That is difficult for any caregiver to handle. It’s a 24-hour job for them. We just need to recover, but we can’t do it without them. I’m blessed to have her and she says we will get through this because the alternative is not an option.

You’ve referred to transplant day as “Miracle Day.” What would you say to your organ donor? And to people considering organ donation? 

I wake in the morning and thank my donor and the donor family every day for this gift. I never thought about organ donation much until a friend of mine needed a kidney and then I needed a lung. Doctors perform miracles every day not only by transplanting an organ but using the right combination of drugs to keep our body from rejecting it. Giving the gift of life to someone else is the most selfless act someone can make, and those of us who need it will forever be grateful. I plan to honor that donor by doing my part in staying alive.

How will you use PatientsLikeMe now that you’ve had a lung transplant? 

I’ve been pretty vocal [asking] about the post-transplant experience when a few of the PatientsLikeMe folks had their transplant. It’s the only piece that we don’t seem to share. I get it – I’m about two months post-transplant and I’m trying to recover. I plan to keep giving back. I will begin posting/blogging again about my experience so others also will know that whatever is happening post-transplant, some others have the same issues. Sharing our experiences and our data is important, and it makes us feel less alone. People like John_R, who I talk to – he says he has had the same experience or experienced something else. It helps those of us who follow to get through it.

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Meet Glenda from the PatientsLikeMe Team of Advisors

Posted December 29th, 2016 by

 

Meet Glenda (gagafor2), a member of the 2016-2017 Team of Advisors. Glenda is a wife, mother and grandmother who finds great joy in making others happy. She’s also living with idiopathic pulmonary fibrosis (IPF).

Recently, Glenda told us about coming to terms with the “unknown” in her future and coping with anxiety: “PatientsLikeMe became my lifeline to information and patients who knew what I wanted and needed to know.” Check out the rest of her story and learn how Glenda hopes to represent other members of the IPF community.

What gives you the greatest joy and puts a smile on your face?

I would have to say making others happy makes me smile. I love to give and do special things for others, it gives me great joy I get so excited when I can find that special gift or plan that special surprise for someone else. My family gives me the greatest joy of all. I have had a wild ride so far with my husband of 45 years and my children and grandchildren. We moved many times throughout the last forty years to different parts of the country, making so many incredible friends and have having such wonderful memories. Yes, I still print out some of my photos just to pass on to my children and granddaughters so they can also look at, hold, and remember all the great memories that will live on throughout time. I am a pretty sentimental person. Our little granddaughters six and nine are so much fun and they give me a reason to fight with all I have and to live my life the best I can.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My greatest obstacle with being diagnosed with a terminal illness is the unknown. Not knowing to me like being in a dark room trying to find my way around, just stumbling around seeking help. Most of my family and friends always tell me “you look so good.” Yes, I do look good, makeup, hair color, and clothes can paint a pretty picture. Inside is the emotional and physical picture they do not see, nor the frightening experience of the what ifs that can happen at any time. Now I try to look at the whole picture of a person and have great empathy with what is going on with them.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

Living with idiopathic pulmonary fibrosis is a day by day experience. Sometimes when it is hard to breathe or get a good breath it is frightening and I need to calm myself and do my pursed lips breathing to get my center and not let the anxiety run away with me. I also have generalized anxiety. One of my biggest fears has always been not being able to breathe and yes here I am diagnosed with something that can throw me off the cliff big time

Most days are good and I go on taking it one day at a time, even knowing it is a progressive disease and could change at any time with an exacerbation. I have become germ phobic trying not to get an infection or virus to cause a decline. My husband and I own our own business so I still work, now on a reduced schedule. Fatigue is sometimes overwhelming and keeps me from getting together with friends and social events as I used to. Every three months I go for pulmonary function tests which give me great anxiety before I get to the hospital to do the test. I am so afraid each time I take them that my numbers will decline. I know I cannot do a cram study for pulmonary function tests, but I do tend to over think the whole procedure for fear of lower numbers. I do take one of two medications approved in 2014 that can slow the progression of IPF in some people. Right now, I receive help paying for the drug, ($96,000 a year) but next year I will go on Medicare so that gives me financial worry also. I have heard of patients not having insurance or being able to afford the cost of these drugs, which makes me angry and sad. Something needs to change for people who need these kinds of medications.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

When I was diagnosed with interstitial lung disease I was not given much information or why I might have gotten it. I began to look on the internet to find out what I might have. I learned that IFP was the worst kind of interstitial lung disease with no cure and a life expectancy of 2-5 years.  Boy, did I have a huge panic attack, checking into the ER. I then had testing done to confirm what I had, and then getting a phone call at work telling me I had IPF. It was so traumatic to be told this over the phone with no explanation just to wait until my next appointment in 2 months.

How important has it been to you to find other people with your condition who understand what you’re going through?

PatientsLikeMe became my lifeline to information and patients who knew what I wanted and needed to know. This amazing site gave me information, advice, and hope. Please get all the information you can so you will know the right questions to ask your doctor. I have found through my own experiences in the health care system you need to be proactive and not reactive with your health and the information you need. Please go seek supports groups and places like PLM to speak with others who have already experienced what you are going through. Then pay it forward to someone else who is newly diagnosed. We all need each other. 

Recount a time when you’ve had to advocate for yourself with your <provider, caregiver, insurer, someone else>.

A few years ago, I became very sick not able to function at all. I gave my symptoms to my physician over and over without him getting to the exact cause. This went on for a year. My doctor became impatient and annoyed with me, making me feel like a stubborn patient because I kept coming back not getting any better. I finally asked him “would you like me to see another doctor?” I don’t believe he had ever been asked that question before. I did change physicians and we finally got to the bottom of the problem. We only have one body and we are the only ones who can advocate for the best treatment we can get. I try to learn as much as I can before I visit a physician so I know the right procedures and questions to ask. I don’t like to think we are just numbers but sadly it can be that way. I have found that going in the hospital requires someone on your behalf to monitor everything being done and given to the patient.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

PatientsLikeMe gave me the hope and compassion I needed at a time I was sinking in despair. Just being diagnosed with a terminal illness is a lot to handle on your own. I immediately connected with other IPF patients who gave me sympathy but also hope. A dear friend I met sent me a book of scriptures she said she wanted to pay for and send. What an angel she has been. Then there are the friends who know so much I just can’t pick their brain enough. It is a 24/7 online support group when you need it. It has given me information to make wise choices about medication to choose, supplements to take, and ways to cope. They have helped me beyond words; I wish I could name them all but just too many. I now hope to carry the torch forward for those who are newly diagnosed to those who are further along the road we travel.

How can we make our health care work better for us?  

Tell everyone about PatientsLikeMe, how we can connect and share with other patients, put in our test results, and know how to talk to our doctors and providers while being more informed.

What made you want to join the PatientsLikeMe Team of Advisors?

The only thing I know is that I wanted to make people aware of the PatientsLikeMe website. I did not expect to be chosen. I am not eloquent at putting my thoughts in writing, nor the most informed patient. I’m just an average person who got diagnosed with a chronic illness who wants to let others know how much I rely on communicating and sharing information. I was shocked when I received the notice I was chosen.  It was only during my trip to meet my fellow advisors that it came to me why. I want patent health care to get better, patients to be more informed. I love having all the data in one place and available to share. I love being able to enter every lab test, pulmonary test and medication so all can see and compare to each other giving us the ability to make informed decisions. I value each person on the site and their willingness to share their experience, data, and all other aspects of their health care. I am an informed patient now able to have a conversation with my physician on a higher level of understanding because of PatientsLikeMe.

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PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375


Patients as Partners: Member Laura on launching a PF support group

Posted June 24th, 2016 by

Laura (standing on left) at the June meeting of the New Britain PF Support Group

Over the past few months, the Team of Advisors has been sharing how they use the Partnership Principles in their personal health journeys. Laura, who’s living with IPF, recently sat down with us to talk about the New Britain PF Support Group she launched in Connecticut, and how important it is to have a community of people who know what you’re going through. Check out the Q&A below to see how she helps patients, caregivers, and their families understand that they’re not alone.

Tell us a little about the New Britain PF Support Group — who’s involved and what’s the goal?

The New Britain PF Support Group had the first meeting September 2015. The meeting is for the patient and caregiver, plus family and friends who may be interested in understanding what their loved one is going through.

The goal is to provide information on PF/IPF. Knowledge can empower the patient and caregiver to work with their doctors and professional team. Most importantly, the support group lets people know they are not alone — we are all in this together and we understand.

How did you come up with the idea of creating the group?

There was only one support group in Connecticut and it was quarterly in New Haven, about an hour away from me. I would go and get such wonderful information and talk to some really awesome people, both professionals and patients. Most of the patients were from the southern part of CT, and I felt that people in the northern part of the state would benefit from a face-to-face support group meeting. I knew from going to the meetings at Yale New Haven Hospital that I always left there feeling more empowered and emotionally stronger. I wanted other PF/IPF patients to feel the same.

Since September 2015, another group has been started further west. In attending those meetings I’ve met new patients. It’s exciting to see that we are touching more and more PF/IPF patients who didn’t have face-to-face support with others who shared the same issue.

What’s the most beneficial aspect of partnering with others who know what you’re going through?

We have quarterly meetings and while the first part is educational (information about what is going on in treatments for IPF/PF), the majority of the meeting is support. If you sat in the corner and watched, you’d notice that the patients and caregivers are like sponges. They want to get information from others who’ve “been there” and they want to give others their knowledge.

At the second meeting my daughter said “Mom, they just want to talk,” and she’s so right. Meetings are supposed to be two hours, but not one has ended on time because no one wants to leave. That speaks volumes.

At our first meeting we had 23 people, and each meeting averages about that many. We have new patients who look totally devastated when they walk in and relieved when they leave. It humbles me to see how everyone touches a life in there.

How is this type of peer partnering different from your other health-related relationships?

For me, this disease has become a full-time job. I’m in a clinical trial, I am in a transplant program at one hospital and being evaluated at another at the moment. That’s in addition to going to the gym to stay strong or to pulmonary rehab maintenance. I have to make sure that all my tests are updated so life becomes one big doctor’s appointment. The doctors, coordinators, nurses, technicians, etc. are all very nice and helpful, but there is nothing like being able to vent your frustration or talk about the excitement of “passing” a test to another patient. Someone who knows exactly what you are going through. It’s priceless, really.

What have been some of the challenges of starting a support group?

I’ve been lucky, the only challenge I’ve had is getting the facility to let us start a meeting. Once that was cleared it’s been a breeze. The Hospital for Special Care has been so very good to me. The Pulmonary staff is so caring and awesome to deal with. I became a Support Group Leader with the Pulmonary Fibrosis Foundation (PFF). They provide grants to start a group and educational booklets. Most importantly they provide support to the support group leaders. I’m told by other leaders that it’s a challenge getting presenters. I’m sure I will have that issue eventually but being a new group that hasn’t happened yet.

What do you enjoy most about it?

I truly enjoy seeing the patients and caregivers. The more patients and caregivers we have, the more family and friends we can educate. The more I get out of my own head and help others, the more emotionally strong and empowered I feel. Every time I see the number of people and new people who show up or even contact me I get emotional. Makes me realize how not alone I am.

Do you have any advice for others looking to start similar groups? 

Yes: Find a place, contact Pulmonary Fibrosis Foundation, and do it. There is definitely a need.

 

 

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“These lungs are a precious gift” — Member John shares his new “new normal” for National Donate Life Month

Posted April 4th, 2016 by

April is National Donate Life Month, an annual awareness effort to encourage Americans to register as organ, eye and tissue donors — and to celebrate those who have donated and saved lives.

We recently caught up with IPF member John (John_R), who we interviewed back in 2014. At that time, John described what his “new normal” was like living with his condition. Today, he shares his new “new normal” after a double lung transplant.

Below, John talks about how he’s able to breathe more easily and exercise again, and how grateful he is to his donor family: “I think of them often, and strive to honor their gift to the best of my ability.”

John (second from left) with PatientsLikeMe staff at the Stanford Medicine X event.

When we chatted with you in 2014, you talked about how living with IPF and being on oxygen was your “new normal.” Last year, you had a double lung transplant. Tell us what your new “new normal” is like.

My “new normal” has really changed following the lung transplant. First is the fact that I no longer require supplemental oxygen. Oxygen tanks, O2 generators and all that plastic tubing are no longer a part of my life.

My new normal does include a fairly strict routine for meals and taking my medications. I take over 40 pills a day split up into six doses a day. Half of the medicines help prevent rejection and infection, and the other half are medications and supplements that counteract the side effects of the first half. This has all become a routine and is easy to keep up with. I sort my meds once a week and am good to go for the next seven days.

Another important aspect of my new normal is avoiding infection. The anti-rejection meds suppress my immune system which increases my risk of infection. Not only is the risk in catching a virus or infection increased, once I get sick, I get really sick. So I take precautions. During cold and flu season I avoid large groups of people. I grocery shop in the off hours, and take full advantage of the sanitizing wipes that stores are now offering in the shopping cart areas. I often wear a procedure mask if out and about where infection is possible. We take care with food hygiene and sanitation at home. These are all habits that we have developed and are now easy to follow.

The best part of my new normal is that it is pretty much that, normal. I can breathe. I can go for a walk around the neighborhood or the mall without dragging along my tanks and tubing. I can walk over 10,000 steps a day, and I can breathe. My new normal is pretty awesome.

Some of our PatientsLikeMe staff met up with you at the Stanford Medicine X event back in September where you spoke about your use of devices. Can you share with us how using devices impacted your experience?

Pre-transplant, I used my Pulse Oximeter (Pulse Ox) to ensure that I was getting enough supplemental oxygen. I used a data logging pulse ox to help my medical team understand my needs and adjust my oxygen prescription as necessary. As necessary was always more. I used my FitBit to help track my steps and help ensure that I was getting in a daily step count. “Keep moving” is a very important goal for the IPF patient. It is not always easy, but important.

Post transplant my pulse ox helped catch an acute rejection episode early enough that, with treatment, the episode was halted and my lungs had zero damage. Self monitoring is a very important part of an IPF patient’s/transplant recipient’s health plan. Maintaining adequate blood oxygen concentration is very important for the IPF patient, and tracking daily vitals is important for the transplant recipient.

How has life changed since your double lung transplant? Have there been any challenges you weren’t expecting?

Life after transplant is so much better than living with IPF. First, I no longer have an expiration date, I have a future. That wonderful gift provided by my donor family is worth all the issues associated with the transplant procedure.

I am healthier and in better shape than I’ve been in for decades. I climb rock walls for fun now.

Yes, there is a long list of things that I’m not supposed to do, but the list of things I can enjoy is so much longer that the “no” list is insignificant.

My transplant team did a very good job of setting post-transplant expectations, but there have been a couple unexpected issues. My post-transplant insurance plan didn’t work out as expected, but we are dealing with that, and returning to work is a bit more difficult than expected.

I do still, at times, find myself getting short of breath. When that happens I notice that I’ve fallen back into my IPF breathing pattern. It surprised me just how long it took to learn how to breath normally again.

Were you able to reclaim any bits of your old life that you had to give up because of your condition?

I can go for long walks, off the path and enjoy nature. I’ve found an exercise routine that I really enjoy, and I can work hard without worrying about blood oxygen levels.

In a very real sense, life has returned to normal.

The last time we talked, you said you planned on spending a lot of vacation time with your family. Now that you’ve had the transplant, what’s different about making vacation plans and how you spend time with loved ones?

Visiting grandchildren comes with some issues. Everybody has to be healthy, or we just can’t go (or they can’t come). We pretty much have to limit most visits to the summertime. We found a towable RV that would work perfect for us, but can’t afford it at this time. A small towable RV would really help us get out to see family much more often

Is there anything you think patients considering transplants should know?

If you are considering a lung transplant, go talk with a transplant team sooner than later. I almost waited too long. If you are too early, no problem, they will let you know and let you know when you should return. If you are not too early, the sooner you see them the sooner you can go through the process and get on the list.

If you are heavy, lose weight. Seriously, the lighter you are the easier your recovery will be. You will be standing very soon after you are conscious. Also, do your best to maintain or even improve your core strength. While you are watching TV, stand up for every commercial. Keep an eye on your oxygen levels and do what you can to keep your legs as strong as you can.

If you can, go to pulmonary rehab, they will get you moving and help with your oxygen use.

A lung transplant is a scary proposition, and the decision to pursue one is a very personal one. My family and I are all very happy that my sweetie and I made the decision to try for a transplant. We have a new future.

I would like to just take a moment to mention my donor family. We received the call that there may be a set of lungs available to us on December 31, 2014 — New Year’s Eve. NYE will never be the same for this family, it will always be associated with loss. During one of the worst days of their lives, this family made the decision to share the gift of life with my family and others. I cannot thank them enough. I think of them often, and strive to honor their gift to the best of my ability. These lungs are a precious gift and I do my very best to take care of them.

 

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Meet Laura from the PatientsLikeMe Team of Advisors

Posted March 16th, 2016 by

 

We’d like to introduce you to Laura, another member of your 2015-2016 Team of Advisors. When Laura was diagnosed in 2013, she’d never heard of Idiopathic Pulmonary Fibrosis (IPF). Flash forward three years, and she’s made patient education and advocacy her main focus.

Laura has spoken before the FDA, regularly blogs about IPF on various social platforms and recently started a support group at a local pulmonary rehab center. When we caught up with her, she told us: “I never thought this would be my path but it has been very rewarding.”

Below, Laura opens up about the loneliness of living with a chronic illness and how important it’s been for her to connect with other patients who know what she’s going through.

What gives you the greatest joy and puts a smile on your face?

My grandbabies, both children and animals. Both have no expectations of my limits and love me unconditionally. No matter what they do they make me happy. Soon I will be a great-grandmother and the joy of knowing I’ve lived to see it is a blessing.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

I try to keep it very simple for those that do not understand IPF. I tell them I have Idiopathic Pulmonary Fibrosis which is scarring of the lung…that my lungs will fill up with scars and there is no cure and currently the only treatment is one of two pills that may slow the progression or a lung transplant. Anything more than that and you lose their interest. If they ask for more information I give it, otherwise I don’t.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

To take a deep breath and learn everything they can so they can empower themselves.

How important has it been to you to find other people with your condition who understand what you’re going through?

Very important! I have a chronic, fatal terminal illness. It’s a very lonely place to be. The only one that understands the shift in moods is someone who is where I am.

 

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“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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Your data doing good: IPF treatment experiences

Posted December 12th, 2015 by

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need.

During #24DaysofGiving, we’re highlighting some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing.

Every year, the Food and Drug Administration (FDA) approves new medications that can help people living with life-changing conditions. But with new treatments come new questions. And that’s exactly what happened at the end of 2014 for people living with idiopathic pulmonary fibrosis (IPF).

IPF is a rare condition that causes scarring in deep lung tissue over time and has no cause or cure, and before October 2014 no available treatment. That’s when two FDA-approved medications for the condition became available, simultaneously. They had the potential to make a difference in the lives of IPF patients, but how could they learn which medication might be right for them? If they started taking one of the new treatments, would they experience the side effects that were reported by the FDA? Would the side effects go away, or get better? In short: were the drugs worth taking?

We set out on a journey with members of the PatientsLikeMe IPF community to get answers from the best source possible—other patients who had already started to take the treatments. We worked together to understand their complete experience, everything from how they learned about the new treatments and if they were hard to access, to their side effects and what might cause them to switch treatments. The data that the community shared (all of it) is helping other members better understand what could work for them.

Here’s just some of what we discovered, and what others are learning, thanks to the data that members donated:

About making choices and getting access
Physician buy-in matters. In fact, physicians were active participants in 60-70% of the treatment decisions IPF patients made. But once they made a choice to begin treatment, patients were challenged to work around obstacles that prevented them from getting access to the treatment, things like how to get reimbursed and even where to fill the prescription.

About the side effects vs. the clinical trial
The overall side effects when first starting the medication were similar. Most patients, between 69-72%, reported ‘none’ or ‘mild’ side effects for one or other treatment. Patients also reported some side effects more often than those patients who were in the clinical trials. For one medication, patients reported higher rates of decreased appetite compared to the clinical trial participants (27% vs. 8%) and sensitivity to sunlight (18% v. 9%).  For the other treatment, patients reported a higher rate of decreased appetite (19% v. 11%) compared to the clinical trial participants.

Switching it up
Most patients, between 55-57%, aren’t sure if they are satisfied with their treatment, but only a small percentage, between 8-10%, report that they are likely to stop taking the medications

There is a lot more to learn here:

We’ll all continue to learn in real time as more and more IPF members share their experiences with the treatments, but the IPF example underscores why giving your data matters so much—to you, to others, and to research. We’re truly better together.

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Still leading a full life – An interview with IPF member David

Posted November 27th, 2015 by

David’s (darbygreenboy) username comes from the village in the English countryside where he lives and is still an active member of the community. We caught up with this grandfather of 10 – a former business owner, mayor and leader of the town council to talk about living with IPF. Here’s what we learned …

David surrounded by his family one Father’s Day.

Tell us a little bit about yourself. What are some of your hobbies and passions?

I am 70 years young and live in England in a village called Darby Green in the Parish of Yateley. It is in the countryside, but only 30 miles from London. I live there with my wife of 48 years, Rose, whom I met 51 years ago at Youth Club and we have been together ever since. We have 3 children: Abbie, Emma and Stephen, and 10 grandchildren aged from 3 months to 13 years old and they all live nearby.

I had my own business for 30 years, but I am now retired. I am a Yateley town councillor and have been for the last 12 years. I was also mayor of my town some 8-9 years ago and leader of the council for 7 years.

I love travelling and before being diagnosed with IPF, we traveled many times to the USA, including touring the Deep South, California, Alaska, New York and many other wonderful places. Now, unfortunately, we can no longer obtain reasonable priced medical insurance to travel to the U.S.

I love to watch football (soccer) and was a keen tennis player until the IPF.

You say in your PatientsLikeMe profile that you were diagnosed with IPF after getting out of breath climbing stairs. What were your thoughts and feelings when you received this diagnosis?

My first thoughts after being diagnosed with IPF was one of stunned realization of my own mortality. I had read on the Internet that the median life expectation was 2-3 years, that was 3 years ago. The first year after being diagnosed I caught a cold that went to my chest. This developed into a type of pneumonia and I was very ill and it took me nearly 3 months to feel near normal again.

What are some changes that happened in your life after being diagnosed? What in your life helps you to better manage your condition?

This made me realize I had to make changes and try to avoid infections. I no longer went to watch winter soccer matches.When the grandchildren have colds they do not visit. If I am at a council meeting and a councillor has a cold they tell me and we avoid contact.

I know it sound severe but it has kept me free from colds for 18 months now. I carry in my travel case a 2-week supply of antibiotics as well as prednisone prescribed by my doctor in case I get a chest infection whilst on holiday.

All that said, I lead a fairly full life. I help with picking up the grandchildren from school and they visit every week. I am okay at walking reasonable distances on the flat, but can no longer run about with the children or play tennis.

Can you describe your experience on PatientsLikeMe? What keeps you coming back to the site?

I find PatientsLikeMe essential and in many ways reassuring. If I am feeling down after getting bad side effects from either drugs or IPF itself, I will go on line to see what others have experienced. And this I find, in a strange way, comforting to know I am not alone. 🙂

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PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

Posted October 19th, 2015 by

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 20152016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing new ways for the healthcare industry to connect with patients to deliver better care.

PatientsLikeMe CEO Martin Coulter said that in an era when patients must be front and center in healthcare discovery and development, the group’s mission is vital to every patient, pharmaceutical company, regulator, payor and provider. “This advisory team includes some of the strongest patient advocates we have ever met. Their experience can empower other patients, and help those serving patients understand what it means to be a good partner. The team’s work will help create a stronger foundation for a more equal and participatory system of care.

More than 1,400 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. The nearly equal mix of men and women are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), bipolar II, cancer, Type 1 diabetes, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lupus, major depressive disorder (MDD), multiple sclerosis, Parkinson’s disease and post traumatic stress (PTS). Members named to the team include: Christel Aprigliano, Craig Braquet, Jeff Demers, Cyrena Gawuga, David Gewirtz, Phyllis Marchand, John Michael, Gus Prieto, Laura Roix, Patti Sanner, Allison Silensky, Angela Stogner, Doug Thornburg and Peggy Zuckerman.

Christel Aprigliano is living with Type 1 diabetes and believes that the key to a good partnership is a focused, data-driven discussion on what matters most to patients. “Patient reported outcomes are crucial to the healthcare conversation. The more information we can share about what life is like for patients every day, the more questions we can ask each other, and the better we can help patients live well with the disease they have.”

The 2015-2016 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times in the coming months. This is the second Team of Advisors the company has formed. Last year, the inaugural group provided feedback to the research team and published a best practices guide that outlines new standards for how researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Hartfell shares about her PatientsLikeMeInMotion™ experience

Posted July 29th, 2015 by

PatientsLikeMe members hail from around the globe, and recently, 63 people gathered on the coast of Scotland for a walk to raise awareness of IPF and help people with IPF through Chest Heart & Stroke Scotland. The coolest part? The event was organized entirely online by PatientsLikeMe member Hartfell, and through the PatientsLikeMeInMotion™ program, everyone was excited to get out there and hike. Here’s what she had to say:

“My experience with being diagnosed was quite complacent, as I had never heard of idiopathic pulmonary fibrosis (IPF). But when I read about it, it was a big shock. I found PatientsLikeMe online and was so glad because there was so much information and I was able to communicate with people with the same illness. I decided to organize a sponsor walk 5 months after I had been diagnosed to raise awareness of IPF. I have been a keen hill walker (hiker) for 23 years, and I organized a coastal walk at Kippford, with 3 levels of walks to cater to all abilities. We had a fantastic day with weather views and company and we raised £1,453.68 ($2,268.44), which was brilliant. The money went to Chest Heart & Stroke Scotland, which included my donation from PatientsLikeMe. There were 63 walkers that took part that day, ranging in age from 7 years to 85 years old. I would like to thank PatientsLikeMe for pointing me in the right direction to organize this event and help raise awareness. The event went so well and was enjoyed by all!”

If you’re unfamiliar with how PatientsLikeMeInMotion™ works, check out our guidelines – we sponsor 3-star members (super health data donors) who form teams and fundraise with their local nonprofits. And these advocates receive a donation, free team t-shirts and more!

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Food for Thought: July (chocolate) edition, take 2

Posted July 7th, 2015 by

Last year, July’s Food for Thought revolved around MS members sharing their experiences with chocolate. This year, we thought we’d continue the tradition – check out what a few members had to say about their relationships with the delicious sweet:

“I have been trying a dairy free diet for a couple of months due to me having a problem with milk protein which is an antigen to the lungs and acts like any other substance that can affect our breathing. I have a treat of dark chocolate now and again and have been grateful for a plentiful supply of dairy free products.”
-IPF member

“For me, I don’t deny myself a little sweet treat.  What I do deny myself is massive amounts of sweet treats. I buy a few high quality dark chocolates and allow myself one per day. Or I buy the sugar free mousse packs in the refrigerator section or the sugar free Jell-O puddings. They seem to work. I also make my own brownies and cookies using high fiber ingredients and sugar substitutes. I have been using Xylitol with good success too.”
-Diabetes member

“I will take a teaspoon or two of coconut oil (organic, extra virgin) and add to it a bit of cocoa powder and a drop or two of Stevia to sweeten.  It tastes like real chocolate. The coconut oil is firm and melts in your mouth just like real chocolate…I can hardly tell the difference.”
-Diabetes member

If you missed our other Food for Thought posts, read the previous editions here.

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“Don’t go it alone” – IPF member Christine shares about her health journey

Posted April 24th, 2015 by

Christine_Williams was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009, and ever since, she’s been managing a “rollercoaster ride that’s terrifying and not fun.” But she’s connected with your community on PatientsLikeMe for inspiration and was even referred to a new medical center to be evaluated for a lung transplant by her “rehabilitation buddies.” Below, read what Christine shared about her diagnosis, progression and thoughts on living with IPF.

Can you share a bit about your diagnosis experience? We’ve heard from many members that finding an official diagnosis isn’t always easy. What that true for you, too? 

Mostly no. In March 2009, I contracted pneumonia back to back within 8 weeks. It was around the time when the swine flu became a big deal, and I had visited Cancun, Mexico that year. I wasn’t necessarily in great health but fairly healthy. I had always attributed my shortness of breath to me being overweight. Because of the pneumonia, a CT scan was ordered. Then a bronchoscopy and finally a video assisted lung biopsy. I was diagnosed however right after the bronchoscopy. I started exhibiting shortness of breath symptoms in 2001. Even went through a series of PFTs at the time but was given an inhaler and told to lose weight. Ironically I didn’t start to suffer from REAL shortness of breath until after the diagnosis. Perhaps I had an exacerbation when sick with pneumonia. 

How has your IPF progressed over the past five years?

To tell you the truth, I really don’t know. I figured the doctor would tell me if there was an exacerbation or not. No news is good news? I do know that my disease had stabilized within 2 years because I was “kicked out” of the lung transplant program so to speak. I no longer needed to see the transplant team doctors however was recommended to still see my pulmonologist which I did. It was only the diagnosis of pulmonary hypertension (in October 2013) that the option of lung transplant is back on the table. I know I need to know this information and will ask my pulmonologist how my PF has progressed when I see her this month. I was only using oxygen at night until March 2013. Then I started using it full time. My liters per minute (LPM) has increased since then too (from 2-4 at rest and 4-6/10 on exertion).

Take us through a typical day in your life – how are you managing your IPF?

I officially retired from my job December 2014. I have up days and down days. Every morning I open my eyes, I thank God! I attend pulmonary rehabilitation (PR) twice a week (Tuesdays and Thursdays). I used to attend a yoga class given by the PR until it was cancelled. I hope they bring it back soon because it brings me much needed peace and helps me breath better. I try to be as “normal” as possible. I cook, clean, spend time with family and friends. I also help take care of my 5-year old twin grandsons for about 3 hours every day after school. I run errands; post office, dry cleaners, etc. Sometimes I go to the doctor by myself but most times I ask for someone to go with me; just to have another set of eyes and ears. I rely heavily on my support system both in person and on-line.

Since it looks like a lung transplant might be back on the table for you, can you tell us a little about what the experience has been like?

It is a very exhausting experience. I’m being evaluated by three different centers (University of Pittsburgh Medical Center, Temple University and New York Columbia Presbyterian). Every other week, I’m changing my mind. Traveling back and forth, making appointments, getting all the tests done can be extremely stressful. I was initially with the University of Pennsylvania lung transplant center. I was rejected by them because of esophageal issues. I was so defeated that I went home and cried and said I can’t do this anymore. But I guess God has something else in store for me. I was referred to UPMC and my cousin had a double lung transplant at Temple. One of my “rehabilitation buddies” went to NYCP and referred them to me. I am a part of the NYCP program and UPMC and Temple are in the process of testing me. I know that lung transplant is not a cure but an option. It’s trading one set of challenges for another. It is good to see some people that I have met on-line over the years thrive with transplant.

How have others in the IPF community on PatientsLikeMe helped support your journey?

Words cannot express how I feel about the IPF community! As I mentioned earlier, they are an important part of my inspiration. Their honesty, love, courage and encouragement help keep me going when I think I can’t go on anymore. I pray for our individual and collective healing on a daily basis. 

You post a bunch to the “Today’s Thought” thread in the forum – what is one thought you’d share with someone who has recently been diagnosed with IPF?

DON’T GO IT ALONE!!!! Please reach out to family and friends. Stay connected even if it’s online. Research face-to-face groups on the Pulmonary Fibrosis Foundation website. Talk to a therapist, priest, rabbi, etc. This can be a dark, lonely and scary experience; a rollercoaster ride that’s terrifying and not fun. Remember that you are not alone!!! And there is a whole community of us just waiting with open arms.

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