Pulmonary Fibrosis News Forums Forums PF Communities Caregivers and Spouses Spouse of patient soon to have lung transplant

  • Charlene Marshall

    Member
    June 4, 2018 at 8:20 am

    Hi Kathi,

    I sure hope others contribute to your question who have been through lung transplantation. If no one responds, I can private message a few folks who I know have been through it to see if they can connect with you. Let me know if that would be helpful? One is a colleague of mine so I am sure she would be open to messaging with you 🙂

    Charlene.

  • emily-everett

    Member
    June 6, 2018 at 9:11 am

    Kathi,

    I work for an organization that has mentors for caregivers of lung transplant patients. Please reach out if you’d like more information.  — Emily

  • Charlene Marshall

    Member
    June 6, 2018 at 7:53 pm

    Hi Emily,

    Thank you for sharing this information – I’d love to learn more about your organization, if you’d be willing to private message me through this site? When I know more details I can share it with many pre and post-transplant patients I come into contact with, as this sounds like a very unique and beneficial resource. Peer-led support or mentors would be so helpful on this journey, and even more so through the journey of transplantation.

    Thanks again for letting us know, and I do hope you’re in touch 🙂

    Kind regards,
    Charlene.

  • sandra-vanzyl

    Member
    August 24, 2018 at 9:58 am

    I would love any advice for my Husband who will be as much a part of my transplant as I will be.  ?

  • Charlene Marshall

    Member
    August 24, 2018 at 11:43 am

    Hi Sandra,

    Thanks so much for your reply to this topic, it is an important one and I hope others can share their experience with you. I don’t have too much personal experience to share regarding this, however, one resource you might be interested in is the Lung Transplant Foundation , in particular their mentorship program. It might be of assistance to you and your husband as you embark on the transplant journey! Emily is their ED and she has connected with me a couple of times, she sounds lovely.

    Congratulations on pursuing transplantation, while I know it is scary, it is also exciting! Where are you in the process? I look forward to getting to know you a bit more through the forums Sandra.

    Kindest regards,
    Charlene

  • beckie

    Member
    April 24, 2019 at 3:17 pm

    My husband just went through the test and they found a heart blockage. They put a stent in this Monday. After 6 months of Plavix, he will be put on the list. It is a bit scary. I worry we won’t get the call for some reason(poor phone reception or some other reason) and we live 3 hrs away from out transplant center so we have to leave our house immediately and hope there isn’t much traffic. I know God will it out, but it is hard to let go and let God.

  • mark-koziol

    Member
    April 24, 2019 at 3:41 pm

    Hello Beckie, if you can’t receive the call because of bad reception, make sure you give as many numbers possible for them to reach you. I have heard of instances where they send the police or sheriffs out to contact you if they think there is trouble with the reception. There are plans in place regarding how far you are out. Everything will be fine. I am sorry you and your husband have to go through this process. Keep in contact. Thanks Mark

  • ruth-edwards

    Member
    April 25, 2019 at 10:49 am

    This wife started a group on line and wrote a workbook as well.  She and her husband Tony are lovely and very helpful.

    https://transplantrogues.com/ 

     

    • mark-koziol

      Member
      April 25, 2019 at 11:44 am

      Hello Ruth, thank you for providing another avenue of support for our forum members. Mark

  • kiran

    Member
    April 28, 2019 at 3:05 am

    Hi all

    My brother has been referred for Transplant. Now waiting for assessment.

    Would anyone be able to tell us re preparing for the assessment please?

    What does the assessment involve?

    We are in uk.

    Thank you

     

     

    • mark-koziol

      Member
      April 28, 2019 at 9:10 am

      Hello Kiran, I can give you my experience of the beginning of the transplant assessment. I live in the U.S. and had my transplant at the Cleveland Clinic main campus in Cleveland,Ohio. I’m happy to say the clinic is one of the top rated transplant centers in the world. I’m fortunate to have Dr. Marie Budev as my doctor, she also serves as the medical director of the lung transplant program. She is one of the best. I was referred for lung transplantation because of ipf. The first day appointment day consisted of the drawing about 50 vials of blood, pulmonary function test including arterial gas. We had an education session in the morning where a binder was passed out. Unfortunately many candidates do not read the contents of the binder. Most of the information you will need is in this binder. I also had a chest X-ray on this day. On this day I also met with a social worker, financial persons and various nurse practitioners and my nurse coordinator. They basically laid out the plan for my pre transplant evaluation and what I should expect.  I do know every transplant center performs different tests for evaluation. They all basically have the same system in place however each one tweaks their plan for their center. During the initial appointment they will tell you what to expect with regards to testing. I do know, patients must be compliant with program. No missed appointments, must do pulmonary rehab, no drugs, alcohol or smoking. Must be under a certain BMI, at the Clinic it was 30 BMI. you cannot be severely underweight either. Make sure there is a caregiver at every appointment. They really want a strong support system in place. If you would like more info on specific tests please ask. Mark

  • Charlene Marshall

    Member
    April 28, 2019 at 6:40 am

    Hi Kiran,

    Thanks for writing, and I am glad to hear your brother has been referred to consider lung transplantation! I hope it all goes well for him 🙂

    I haven’t been through the assessment myself, so I’m not sure what it all involves in North America, let alone in the UK. I’ve heard about it from others, but not been involved in it. My co-moderator @mark-koziol has had a lung transplant in the US, so he may be able to speak to what it involves here, which I’d guess would be similar to where you are but can’t be certain. I’ll let him respond and share a bit about his experience with you. Wishing your brother the best!

    Warm regards,
    Charlene.

  • kiran

    Member
    April 28, 2019 at 12:04 pm

    Thank you Charlene and Mark for your prompt responses. I really appreciate it.

    Mark thanks also for posting detailed account of your assessment experience. All seems a lot, but we are where we are.

    I am sure we will have more questions – will ask- thanks.

    Kind Regards

    Kiran

     

Log in to reply.