Dear Survivors, We Can Do Better When It Comes to Sharing Our Stories

Christie avatar

by Christie |

Share this article:

Share article via email
Main graphic for column titled

When someone receives a life-changing diagnosis, it can feel like their world is caving in. A diagnosis changes a person’s landscape, alters their expectations, and obstructs their former worldview.

Some people understand what this is like, while others, no matter how hard they try, just don’t get it. Chances are, when it comes to personal networks, those who don’t understand probably outnumber the ones who do. It can be isolating to grapple with a diagnosis that even loved ones fail to truly comprehend.   

Those closest to the person who is diagnosed can be of great comfort. They might try to learn more about the condition and listen to the various experiences in an effort to empathize. But there is a difference between a dependable friend and someone who understands what it feels like to walk in another person’s shoes.   

Luckily, support groups help to foster the connections that make life with a rare disease less lonely. Before the pandemic, my family and I attended many in-person support groups at the University of California, San Francisco, where my mom, Holly, received her bilateral lung transplant. I felt instant connections with other caregivers and enjoyed learning about the transplant journey alongside others.  

These days, those meetings, and others like them, still take place on video chat platforms.   

Another good place to find community support is in forums. Since adding the role of forums moderator to my résumé, I have witnessed how much information and support are shared in our Pulmonary Fibrosis News Forums. With over 2,000 members, there are plenty of experienced people to answer the endlessly variable questions that this disease prompts.   

If knowledge is power, support groups and forums communities are like the Hoover Dam. And like hydroelectric power plants, support groups are highly productive, but imperfect, entities. They tend to lack one very important element: success stories.

A handful of post-transplant patients have come to our support groups, but they are far outnumbered by wide-eyed caregivers and cannula-clad crusaders. I’ve noticed this in my own health struggles as well. For traumatic injuries, surgeries, and maladies, I have sought refuge in online support groups. In those groups, I found people just like me — in the thick of their trauma, in the depths of their despair, searching for answers and hope.  

When six different doctors told me I would never run again after a horrendous foot injury, I wanted to see videos of people with similar injuries running, playing sports, and beating the odds. Commiserating with others in the foot fracture forum eased some of my anguish, as I realized that at least I wasn’t alone.

But I wanted out of that club. A full recovery felt almost impossible when I wasn’t seeing anyone who had done it.   

I appreciated the community, much like my family appreciated the community of our transplant support group while my mom was in the ICU. But in both cases, I wanted to fertilize the seeds of hope with other people’s success stories. I yearned to see people who had been in my mom’s yellow hospital socks now climbing mountains.  

The mountain climbers are out there, I promise. As are the family grill masters, the “World’s Best Nanas,” the passionate painters, and the world travelers. So many people are thriving with transplanted organs. I know them now, so I assure you they exist, even if they aren’t in the forums.   

The reality is that those who survive something as traumatic as an IPF diagnosis or a lung transplant get through the initial euphoria of surviving, and then they move on. They don’t want to linger in the support groups that remind them of their most painful days. Who could blame them? They have lives to live!

For me, it is an emotional burden to relive my mom’s sickest days while writing this column twice a month. Sometimes I’d rather lay down my pen and move on. But I know that there are people out there who need to see survivors and thrivers to cultivate hope for their own journeys. So, here I am, telling my mom’s story. Our story.  

And now that I am running again almost three years after my foot injury, I still check in with the Lisfranc fracture club (and the hip surgery club) every once in a while. I want to show people that at least one person has beaten the odds.   

If you are out there thriving after receiving a lung transplant, I implore you to stick around. Share your story for those who are still in the trenches. You don’t have to climb mountains, but showing up and saying “I got through this” could be all that someone needs to read to keep climbing the mountain of their IPF journey.

***

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Suzanne avatar

Suzanne

While I haven’t yet had a transplant to “cure” my IPF, I have had a lis franc foot injury so I hear you on that malady! It was a horrific six months before I was able to get back to just walking normally! So much soft tissue damage and three broken bones, all while having to travel for work. Not so much fun.

Glad to hear you have recovered and I promise, if I am ever a transplant survivor, I will stay on this site and share my success.

Reply
Christie avatar

Christie

Oh Suzanne, you're in the PF club and the LF club too! How crazy to see these two rare worlds collide. I'm sorry that you have experience with both of them, but I am glad that you are back on your feet! Thanks for saying you'll stick around :) I don't think we should re-traumatize ourselves all the time, but I do think sharing our stories can be incredibly powerful for those in the trenches. If it feels too yucky, don't do it. While it's sometimes painful, I have found it to be therapeutic to share the stories here in my column.
Wishing you the best,
Christie

Reply
Peter Terry avatar

Peter Terry

I’ve had PF for five years. I’ve been doing extensive walking ever since. It seems to have worked. Then I got Covid in the beginning of January. That had always been my greatest fear. After two visits to the emergency room I managed a flight from Phoenix to Spokane where we live. I ended up hospitalized for five days with low oxygen levels. I’ve been on oxygen for the last four and a half months. Last week I had the Johnson and Johnson shot. Two days later I saw the Doctor. My oxygen levels shot way up. 98 while sitting with a normal pulse. Without oxygen they would always drop to 78 and my pulse rate would double. This is incredible.

Reply
Christie avatar

Christie

Wow Peter, that is incredible news! I'm glad to hear that you got through your covid diagnosis without too much time in the hospital.. Not that 5 days is any fun, but pretty lucky considering that you had PF working against you. Thank you for sharing and keep us posted if you find out why your stats have gotten so much better after the J&J shot. I bet your doctors are interested too!
Christie

Reply
Mike fryman avatar

Mike fryman

I have to say IPF, I am 70, retired RN and was dx a year ago! I don’t know how it is going! I was an athlete, bikes, running, tennis—probably too much! Presently feel I am OK though on constant O2! Just can’t last long with out it. I work out thread mill and recumbent but have occasional bad 30-45 min congestion coughing spells! Don’t know, just back from Moab on ATV, was great!
I have so much but don’t know about future but then again no different for anyone! Am on Ofev/cellcept just take it day at a time! Thanks for letting me vent. Mike

Reply
Christie avatar

Christie

Thanks for sharing Mike, I'm glad you were able to have some fun in Moab. ATV sounds like a good trade for biking and running, as a way to get out and see the natural world. Are you a member of our forums? It's a great place to "vent", as you say, and get support from others going through this. Check it out! https://pulmonaryfibrosisnews.com/forums/

Reply
Mary Joyce avatar

Mary Joyce

Hello! My mum 68 years old is suffering ILD. She was diagnosed last year. She has no appetite, I need to force her to eat. She had lost weight. Her treatment was with cortisone Medrol 4 mg. She has now stopped her medication after 08 months. She still feels breathless especially in the morning.please tell me what do you recommend as meal.thank you

Reply
Christie avatar

Christie

Hi Mary, I'm sorry your mom is having trouble with her appetite. I'd recommend you take these concerns to her doctor, as they can often provide medications to increase appetite, or high-calorie meal replacement (like shakes) just to make sure she's getting proper nutrients and calories in a compact serving size. You might also think about checking out our forums, as loss of appetite is a common complaint, many patients can share their tips with you there.
https://pulmonaryfibrosisnews.com/forums/

Reply
Elle avatar

Elle

Hello, well my Doctor never told me, I had it.I found out after requesting a copy of my Ct Scan from the Radiology Center. Boy, was , I shocked. My entire world has turned upside down. I was seeing the nurse practitioner since the Pulmonologist never had the decency to tell me. So it has gotten worse. My lower left lung is compromised and my upper right lung. Every day I have more and more pain. I am trying to find a new doctor but every single day at 5:00 P/m I have the most horrible coughing spell. I lose oxygen from my brain, I fall down, I vomit. I feel like I am dying.

Reply
Christie avatar

Christie

Hi Elle, I am so sorry to hear that you found out about your disease by reading your radiology results. What a serious failure on the part of your doctor! I hope that you find a new pulmonologist soon who can a) be honest and straightforward about what is happening and b) help provide some relief from your symptoms. There are lots of things that may help the cough, pharmaceutical and otherwise, which a good doctor should discuss with you. Wishing you the best of luck, and hoping you get some treatment and feel better soon!

Reply
Cindy avatar

Cindy

I’m frightened but know God has a plan. Lung biopsy happens early June. Inhaler to expensive now. So extremely tired by mid afternoon. Hard to do my job and affecting my motivation

Reply
Christie avatar

Christie

Cindy,
So sorry to hear that you are struggling with fatigue and motivation. I hope that your biopsy will get you started on a treatment path that will help with your symptoms. Sending love,
Christie

Reply
Cheryl avatar

Cheryl

I got pf since having severe covid in december my lungs were crushed,I am dependent on oxygen, its leaves me breathless when I move around ,my life is totally changed now

Reply
Christie avatar

Christie

Cheryl I am so sorry to hear that you got PF from covid. I wish people would see that there are long-term effects of covid that aren't in the news. Your story is so important. I know it's hard, but please keep sharing. Also know that you aren't alone. There are members in our forums who are going through the same thing. If you haven't, please check it out, it can be a great place for support and information. Wishing you the best,
Christie

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.

Your PF Community

Woman laying down reading

Visit the Pulmonary Fibrosis News forums to connect with others in the PF community.

View Forums