Finding Support While Going Through Difficult Times
Before receiving my official diagnosis of idiopathic pulmonary fibrosis (IPF), I was confident in my knowledge of it. Since it was suggested as a potential diagnosis, I spent many hours researching all facets of the disease. I was amazed by how many people were affected by IPF, yet so little was known by the general public.
After my diagnosis, I discussed this aspect with my physician, who told me pulmonary fibrosis is not a “chic disease.” I interpreted this to mean it is not a widely accepted disease like some others in which funds are plentiful for research. Most people assume that if a disease is lung-related, it is the result of smoking. And most people with IPF know this to be untrue.
My doctor suggested several organizations for support and to help me cope. I gained a lot of knowledge by researching organizations, professional medical journals, pharmaceutical companies, and research and teaching hospitals. I was involved in several pre-transplant support groups and became known as a person who could mentor other patients. Many other participants would come to me for support and answers since I kept abreast of new research and hopeful possibilities. It was not that I was smarter than anyone else, but I did know how to use my research skills to help others.
Several months after my transplant, my pulmonologist asked me to participate in a conference sponsored by the American College of Chest Physicians (CHEST) and The American Thoracic Society. I told my story to representatives from Genentech and Boehringer Ingelheim, the two companies that make Esbriet (pirfenidone) and Ofev (nintedanib), respectively. Even though these employees sold, researched, and developed the medications that may stop the progression of pulmonary fibrosis, they weren’t necessarily focused on the human-nature aspect of IPF. Participating in these conferences allowed me to provide knowledge to some who may not be so familiar with this life-altering disease.
A mentoring opportunity arose with the Lung Transplant Foundation that I accepted to help pre- and post-transplant patients. It’s truly rewarding to share my experience with others as they continue their journey, and their responses are positive and encouraging. Going through the transplant process is one of the most challenging periods someone has to endure. I hope to at least alleviate some of their fear by offering my support.
I attend a lung transplant support group on a continuing basis. Ideas and experiences are exchanged, and speakers from the local transplant centers are usually the focal point of our meetings. Pulmonary fibrosis patients are prevalent in our group, and many pre-transplant members have an abundance of questions. My hope is that I can encourage them to respect their donor by taking care of themselves and living life to the fullest.
Following are several national organizations where a person can get assistance. Support can also be found at the local level through grassroots support groups and hospitals.
The Pulmonary Fibrosis Foundation
The Lung Transplant Foundation
American Lung Association/Better Breathers Club
Second Wind Lung Transplant Association
Transplant Recipients International Organization
I am interested to see how many of our readers have pursued support for a medical condition. Have you assisted others in their journey? Please share in the comments below.
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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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Carolyn
Hi Mark,
I appreciated your article. My husband has just recently been diagnosed with IPF although I believe he has had it since January 2018 at least. He finally went to the Dr. in March of 2018, and was treated for thyroid issues. A pulmonologist also continued to miss this diagnosis. I am more eager to learn about this disease, as a nurse. I think my husband is struggling some with understanding this horrible disease.
Do you mind me asking how long after you were diagnosed, did you receive your transplant? And how are you doing now?
Regarding pursuing information about other medical conditions and helping others, I have for both of these questions. As a nurse, I have helped all of my family members and several close friends to get around the complicating medical arena to get the best of care. If there was a profession for patient advocates, that would be my job. I also did a lot of research and have read many forums. Learning from others has been invaluable in helping me help my family as well as myself to cope with their care, and now for my dear husband.
I just saw that you have written several articles that I look forwarding to reading to learn more about the journey of IPF. Thank you so much for sharing.
Mark Koziol
Hello Carolyn, first of all let me thank you for reading and commenting on the article. My wife said she is going to reply to you when she gets home from work. She said she feels honored to do this. I was officially diagnosed in December of 2014 and received my transplant on December 4, 2015. 2015 was a pretty rough year for me as my oxygen needs were increased and quality of life was greatly impacted. I tried to do my regular activities and others accommodated me. I had and have a great support group. Sometimes it got to the point where some of my friends were too protective of me and I wanted to slap them upside the head but what you gonna do. I am doing great although it seems every March I get some type of virus that I never heard of. This year it was called the coronavirus, however it is not from drinking coronas. Right now the virus is moving out of my system but it never really impacted me. I had a tickle cough here and there and felt a little more fatigued than usual but otherwise I resumed my normal activities. Knowing that you are a nurse will help in his recovery. At my transplant center they want me to call if I have a sniffle or something out of the ordinary, I have no problem doing that but some do and they wait too long then other problems set in. I was just talking with my nurse coordinator on Tuesday and she stated this and also how happy she was to be my nurse because I am an easy patient. She told me I am very compliant in my recovery and many patients do not follow protocol, such as taking meds on time, exercise and slipping into bad habits. Hopefully other family members will be involved in the care for your husband. This will alleviate some stress for you and him. Please comment anytime. Mark
Carolyn
Dear Mark,
Thanks for sharing and I have already read your wife's letter. Her advice was so very helpful. Thank you.
So, you waited a year for a transplant? Did you start with Oxygen right away? I think Gil will need it very soon. In fact, I told him he will probably feel better.
His cough is getting worse. Did they give you any cough suppressants? I don't even know if that would be helpful. We will be meeting the Transplant team on Monday, and then another pulmonologist on the 30th. I think that information will help us both.
Gil is very private and hasn't told many of his friends. He will hold off as long as possible. I hope they do come around and bug him. It will do him good. Right now, it's just me. And I am a major hypochondriac. So every time he breathes, I am assessing him, putting the oximeter on his finger, asking a slew of questions. I am sure I exhaust him.(maybe that's why he escaped to bed at 7:30 tonight. :( )
Sorry you have had so many viruses. I am sure that is because of all of the anti-rejection drugs suppressing your immunity. But the drugs they use today are supposed to be easier than back in the day. Congratulations on being a compliant patient. You're the teacher's favorite. :)
Does it feel ok just having the one lung replaced? This is a question I plan to ask the Doctors on Monday: if the pf is idiopathic, does it happen again to the new lung?
Thanks for answering all my questions. I really appreciate your openness and willingness to inform and help.
Happy Easter weekend!
Mark Koziol
Hello Carolyn, Yes I waited almost a year after diagnosis. I was placed on 3-4lpm of pulse and I about a month later i caught rsv and probably had an exacerbation. Oxygen was then increased to 4lpm at rest and 6-8 lpm at exertion. I was on the transplant list for approximate 2 1/2 months. You are correct he will feel better when he is on oxygen. Really no cough suppressants but even now they like me taking DELSYM cough medicine when I do have a tickle. He should tell his friends, he will like the company. Viruses haven't been bad, I usually get them every March. I also have Evans Syndrome, aka- auto immune hemolytic anemia so my white cell count is normally lower anyways. Yes if feels ok with one lung, and I will not get the fibrosis in the donor lung and my native lung hasn't acted up. I'm gonna send you an attachment of questions I used. I sent the email with lung article too. Mark
Taleena Koch
Breathe Support Network also has an online lung transplant support group. We are open 24x7 all over the world. Check us out at http://www.facebook.com/groups/PFLungTransplantSupportbyBreatheSupport.
Thank you for all you do! It’s important work supporting others.
Mark Koziol
Taleena, thank you for commenting and reading my column. Thank you for still being a caregiver to many PF patients and caregivers.
Mark
Andrew Jackson
Hello Mark,I really appreciate reading you story, and your passion for mentoring other's. I'm a Bilateral Lung Transplant Survivor, it will be 5 yrs in July of 2019. You have inspired me to keep on sharing my journey. I mentor a former pediatrician, now no longer able to practice because of pulmonary fibrosis, and has since retired. He live in Houston, Tx where there isn't an abundance of patient on patient support. I must admit I was intimated at first. But as we conversed back and forth, I realized, he was seeking the experience of what I went through as an IPF patient, and what is it like now that I have received my transplants. It's a year and a half since our first interaction, we're now good friends. Two days ago, he was placed on the transplant list. I just want to say, don't be afraid to mentor someone, even if you think you're over your head. I just relate my experience and what I have learned on this long journey. And one think I've leaned, and that is, don't be afraid to say I don't know the answer to you question, but let's find it together.
Mark Koziol
Hello Andrew, sorry it took so long for me to reply. Thank you for reading and commenting. You are so correct on the mentors description. yes, they are looking to hear our experience and how we handled the adversity. Thank you for being a mentor. I just recently had a short but fulfilling visit with one of my mentees. In your last sentence, again you are so correct. Don't ever be afraid to not know the answer. That is a great reply. Keep in contact Andrew. Thank you and best wishes, Mark.
David Lindahl
Do you think any of the major lung transplant hospitals would consider eliminating the arbitrary age requirement and try even a single transplant on a health 80 year old. I would really appreciate your thoughts on this. Thanks in advance
Dave Lindahl
Mark Koziol
Hello Dave, I feel you are correct regarding the arbitrary age of lung transplant candidate. I personally know a gentleman who received his double lung transplant at the age of 73. He received it at the Cleveland Clinic. The oldest person I have heard of receiving a transplant is 80 years old and also at the clinic. I will post the link for you Dave. The Cleveland Clinic is a high risk center for lung transplants. It is also a high volume center. I can tell you this I have received nothing but excellent care at the clinic. The doctor who is the head of lung transplant center at the clinic is my doctor. She is wonderful. Dr. Marie Budev. Dave, best wishes and keep in contact. Mark
https://my.clevelandclinic.org/patient-stories/116-cleveland-clinics-oldest-lung-transplant-patient-now-breathing-easy