Facing Pulmonary Fibrosis: Steve's story
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- Опубликовано: 16 авг 2022
- Steve Jones recounts his experience living with Idiopathic Pulmonary Fibrosis (IPF), a rare disease that affects around three million people worldwide. IPF can severely reduce the quality of life and independence of those diagnosed due to its progressive and chronic nature.
As with other rare respiratory conditions, the lack of awareness and rarity means that those living with it may also feel isolated. However, at Boehringer Ingelheim we believe rare does not equal alone. Steve Jones, who lived with IPF prior to his transplant, talks about adapting his lifestyle to live well with the disease, his support systems and his experience with symptom onsets. Now the Chair of the Trustees of Action for Pulmonary Fibrosis, Steve is passionate about spreading awareness of IPF and connecting those who live with the disease to help them to live well, as are we.
At Boehringer Ingelheim, we are making a generational commitment today for those living with IPF tomorrow to help them live better with the disease by spreading awareness and supporting the community. 
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Diagnosed a little over 5 years ago. Been on oxygen 24/7 since. Was pretty stable for a couple years but been getting worse. Been through all the emotions and feel blessed to have a long goodbye. Not everyone gets that. And I know where I'm going when I check out of here. It's going to be an upgrade and I'm not taking this oxygen hose with me. I did refuse to take either of the 2 medications. I realize I'm in the minority on that but it was the right decision for me.
I wish there was more info for ppl who cannot have the transplant. What to expect. My husband sometimes is gray with dark eyes or very pale white. It’s scary. I’m hoping this just means he is not getting out enough congrats to the man speaking. So glad he was able to get the transplant and all is well 😊
Dear Christina, Thank you for your comment and sharing your and your husband’s story with us and the community. We can imagine that daily life can be tough for both of you. When living with a disease such as pulmonary fibrosis, it is important that the patient and the carer know as much as possible about the disease, including possible symptoms and how it can develop over time. If you are interested in dedicated information for carers, we invite you to visit: www.lifewithpulmonaryfibrosis.com/carer-support/caring-for-someone. It can also be helpful to join a support group to exchange with people who are in a similar situation and who can share their personal experiences. We wish you and your husband all the best during the journey. Kind regards, Helen
Glad your doing this
My mother has been diagnosed with IPF over a month ago. She's currently seeing her doctor about it a was prescribed Ofev. But the medication is expensive. Her Medicare has covered half of the cost. But still needs help with the rest. She's going to send an application to a foundation to see if they will help. Hopefully, they will and the medication helps manages her condition. In addition to being eligible for and receives a lung transplant in the near future.
How is the doing now friend I hope she is doing better
My sister died of Fibrosis of the Lung at 48 years old. At the time, I felt her treatment was incorrect, in so far as 25 years ago, they gave her several variations of anti-biotics. There are new medications now for this conditions to slow it down, and there is self help, in so far as to exercise (walk on flat) if you can. Eat well, fruit (pineapples, berries), room temp at no lower than 18 degrees. Vitamin C, D, Omega. In bed, lie on your side, with head above chest. As a Massage Therapist, effleurage (gentle stroking) on the back to relieve congestion with almond oil (but not on the bone ie. spine). I have just found out one of my friends has the early stages of the condition.
Hi @mop714, We're very sorry to hear about your loss and your friend's health situation. You're right, small lifestyle changes, such as a good diet or gentle exercise can help improve ones overall wellbeing. It sounds like you have gathered helpful information and your friend is lucky to have you by their side. For more helpful tips and information on pulmonary fibrosis, we invite you and your friend to visit: patient.boehringer-ingelheim.com/lwpf/living-with-pulmonary-fibrosis/taking-care-of-yourself We wish you both all the best, Annika
Is this video intended to be encouraging, if one is not eligible for a lung transplant ??
Dear Gerald, Thank you for your comment. It is not our intention to discourage those who live with pulmonary fibrosis and are not able to receive a lung transplant. We are sorry in case we made you feel that way. Instead, we want to show that people who live with this disease are not alone but there are others who face similar challenges. We are very thankful that Steve shared his very personal story and journey with us and our community and we hope that his words can give hope to those who need it most. We wish you all the best, Helen
I don't know if I've got it or not got to have more tests . I'm so worried.
Dear Paul, We can imagine that dealing with such an uncertain situation can be difficult. From the exchange with patients we learned that an open conversation with a healthcare professional is very important and can help you learn how to cope with such a challenge. We wish you much strength and all the best! Kind regards, Helen
the letter is say emphysema and PF on top and bottom of letter saying evidence of it .But I'm still working . Think I've got over the worry bit now it's coming to terms with it. @@boehringeringelheim
Great explanation...my mother has started getting breathless.
Thank you for your comment. We are very sorry to hear about your mother's health situation and can imagine that this is not easy for both of you. In case you are looking for any information, for example tips for the daily life with pulmonary fibrosis, we invite you to visit our website: patient.boehringer-ingelheim.com/lwpf/ All the best for you and kind regards, Helen
Why did you tell us this? !
Perfectly reflects my own story but I'm told 'Too old for transplant'. What age were you?
Dear Michael, Thank you for your question. Steve is was 67 years old. People living with pulmonary fibrosis might experience different journeys, so treatment options might also vary from one person to another. We assume you are in regular exchange with a medical team - if not, we recommend you to do so. We wish you all the best. Kind regards, Helen
@@boehringeringelheim Thanks for that. I'm quite a bit older.
My husband was told not eligible. He is 77 but I think was because is ipf was to advanced. . He stays home mostly. Still able to shower on his own but does it in 3 settings. Hugs to all going through this
Me father die in 70 years old.. 1.5 year on oxsigen.. No transplant in Croatia after 55,and por doctors no cere
My mother has died as a result of this disease, this happened only two weeks ago and I’m in complete bits 💔💔💔💔💔