Pulmonary Fibrosis News Forums Forums Lung Transplantation Transplantation in Poland

  • Transplantation in Poland

    Posted by worrying_after_dad on May 5, 2024 at 3:58 am

    Hi 👋 Just wanted to share our new hopes when it comes to my dad. He is now on o2 24/7. 20 of May we are going to meet a doc with experience in IPF in capital city. I think transplantation could be the only way now. He is on ofev since January, but it only gets worse. Just wanted to share my emotions here and leave the note for someone looking for a help in my country.

    worrying_after_dad replied 4 weeks, 1 day ago 3 Members · 4 Replies
  • 4 Replies
  • CarRob8773

    Member
    May 6, 2024 at 11:21 pm

    I hope all is well. My mom got a single lung transplant in 2019. Things did not turn out like they should have. She had several times being in the hospital because of rejection. In June of 2020 she found out that she had stage 4 lung cancer. She was a strong lady and she fought to the bitter end. She was not able to get chemo or medication for the cancer due to the new lung.

    As for me, I was shocked and heartbroken because of the findings. It was unfair. But in August of 2020 she was wanting to be in home hospice. That is what I did. She succumbed and fought this battle like a soldier and a warrior she was. In November 2020 she passed with me fixing her position in sleeping. This was when she took her last breath. I miss you mom. Thank you for showing me that I can be strong and determined. Rest In Peace my beautiful mom.

    ——————————————————————————-

    For those waiting for a lung transplant I will be praying. Follow doctors orders. When you get that phone call wherever you are at or asleep for the night. You have up to 3 hours to make it to surgery or else the lung gets damaged. Have a bag packed. And you are out of super intensive care be prepared to be walking within 3-5 days to get that new lung going. Make sure you go to every doctors appointments. It is extremely crucial.

    This story is to encourage and not get you sad. Stay determined and stay focused. Good luck to those on the transplant list and to those on a new lease at life.


    • worrying_after_dad

      Member
      June 2, 2024 at 7:54 am

      Hi, I am so sorry for your loss. Your story really moved me, life is unfair…

  • Michael

    Member
    May 7, 2024 at 4:34 pm

    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

    • worrying_after_dad

      Member
      June 21, 2024 at 2:54 pm

      Thank you a lot for your answer. We collected all surveys now and waiting for a decision if he can be on the list. 🙏

Log in to reply.