[Michael]

First, my blessing to you and your dad.

I do not know anything about transplant programs in the EU but I will share my experience as a PF patient in the US. I was recommended to enroll in two transplant programs near my home, Brigham and Women’s Hospital in Boston, MA and Columbia Presbyterian in New York City. After extensive physical testing, I was accepted into both programs but I am not listed yet. I am monitored by both programs every 4 months as my PF progresses.

I am certain that you can contact any lung transplant center in the US and the EU and inquire about transplant programs/hospitals in the EU that are available to you. I’m listing the main contact numbers for the two transplant programs that I am affiliated with, other centers in the US and then the EU Heart and Lung Transplant Federation:

Columbia Presbyterian Hospital NYC – https://www.nyp.org/transplant/lung-transplant

Brigham and Woman’s Hospital, Boston, MA – https://www.brighamandwomens.org/surgery/transplantation/lung-transplant

There are many lung transplant centers in the US, here is a general link – https://www.americantransplantfoundation.org/about-transplant/faqs/#lung-faq

Here are a few links to EU transplant federations/programs – https://www.eu-patient.eu/Members/The-EPF-Members/Full-Membership/European-Heart-and-Lung-Transplant-Federation/

There is a lot to learn about transplant programs and I’ve found all transplant centers I’ve contacted are very helpful. The best of luck in your research, Google is a good place to start.

Michael

nyp.org

Lung Transplant | NewYork-Presbyterian

A lung transplant is a surgery done to replace a diseased lung with a healthy lung. Learn more about lung transplants at NewYork-Presbyterian.

[Michael]

I’ve been on a full dose (801mg daily) of Esbriet since 2020. The first year to a year and a half I had itchy skin from sun exposure, no matter how brief. I bought sun-proof driving gloves, long-sleeved shirts and a wide-brimmed hat which helped tremendously. Sunscreen on any exposed skin was imperative.

I got reckless a few times and did not use my protective gear. My hands and arms burnt very badly to the point of severe swelling up and developing a horrible rash. My doctor prescribed a few creams and short-term steroid therapy. It cleared up in about a month but the itching was frankly maddening. Sun sensitivity is a known side effect of Esbriet.

After about one and half years this side effect went away slowly to the point that now I enjoy full sun without any ill effects. I’ve heard from others the same gradual disappearance of photosensitivity and in some others it does not subside.

I hope this helps.

Michael

[Michael]

I use The Assistance Fund to assist with the cost of my medication. They are wonderful and very helpful. – https://tafcares.org/ .

tafcares.org

The Assistance Fund - TAF

We’re here to help. Copays shouldn’t interfere with your life – that’s why we work every day to give you access to the medications you need.

[Michael]

Hello, I get my copay covered by The Assistance Fund – https://tafcares.org/ . They provide assistance for rare diseases, they include pulmonary fibrosis in their covered diseases. I found it seamless and easy and they are very helpful when contacted. They cover all copays after my insurance pays their portion. My speciality pharmacy has their copay code and I pay nothing.

Best of luck to you! Michael

tafcares.org

The Assistance Fund - TAF

We’re here to help. Copays shouldn’t interfere with your life – that’s why we work every day to give you access to the medications you need.

[Michael]

I too have found that the prescribed inhaler that contains albuterol makes me feel worse (Combivent Respimat).  I also use Symbicort which contains a steroid to reduce inflammation, that does not seem to aggravate my airways like the one containing albuterol.  Thanks for this post, Charlene – it’s helped me validate the situation. I go in for my quarterly testing next week and will report this to my pulmonologist.