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Thread: Knowing when it's time?

  1. #1

    Knowing when it's time?

    Hi. I've been approved for transplant at Duke, and I'm just waiting at this point....waiting until it's time to get listed. I'm not really sure what that means. The quality if my life has changed so very much, but how bad does it need to get? I'm not sure where that line is. It would really help me if other people who have had transplant could chime in about their lives just prior to being listed and how things were when thy decided to go from the "wait list" to the actual list. Thanks so much.
    DDf508, 46 years old, 2 daughters (ages 16 and 12), PA, SA, Aspergillus, Achromabacter, GERD, CFRD, Asthma, Married 20+ years, FEV1 25% or lower, FVC 54%, living in Durham waiting to be listed at Duke.

  2. #2
    Senior Member
    Join Date
    Aug 2009
    Posts
    109
    Hi mom2two.
    I'm kind of in the same position as you, I'm 42 and my FEV1 is about 30%, and my burden of care is increasing year on year.
    Just had my first transplant team meeting a month or so ago.
    I get haemoptysis and produce a lot of sputum and end up in hospital for IVs every couple of months.
    Quality of life is declining steadily.
    Transplant team are currently going to "watch and wait".
    Bascially, I've been advised I need to stretch these lungs out as far as they will go.
    Its really tough.
    I have a wife and two boys 10 and 5. I can still walk short distances but I'm finding it harder and harder to participate in family life.
    As such, I really want to get the transplant, but the transplant team say its too early, so I have to live with increasing anxiety and poorer health.
    I know people who were on oxygen prior to transplant and other people who weren't.
    I'm not on oxygen yet, and don't want to be either.
    How are things with you?

  3. #3
    Hi Kyeev, Sound similar to me. Duke actually just gave me the go ahead a few weeks ago for relocation and transplant, and here I sit in Durham, waiting for my first class tomorrow! I'm actually excited to get on with it, even knowing the risks and dangers. The quality of my life has been pretty sucky lately and at this point, I just want a chance to start feeling better and be able to do stuff with my kids and husband. My FEV1 is 25% or less, my FVC is around 54%. Always maintained a good weight with no problem, but I've dropped a good 15 pounds now in the past 8 months despite a pretty decent appetite. IV antibiotics no longer help, nor moderate dose of steroids. I'm now on 4 L of oxygen just hanging out, and 6-10 if I am exercising. When I get "breathing attacks", which seems to be when a mucus plug shifts and cuts off most of my available lung space, I need instant access to about 10 L of O2, otherwise it gets ugly really fast. Never coughed up blood before, but have several times this summer. Spend a lot of my time hacking up gobs and gobs of green and dark yellow. Inhaled antibiotics no longer effective. Without oxygen and rehab 3 days a week, I wouldnt have made it through the past year. Duke has been telling me to wait for the past year, and they suddenly changed their tune this August when they saw my FVC and weight had dropped so significantly and my lungs sounded downright symphonic. (sometimes the chest rattling keeps me awake at night!) They now want to make sure I get listed before I get too much worse. I'm still physically pretty strong, but a lot weaker than I was a year ago. It's time. I am so ready.
    DDf508, 46 years old, 2 daughters (ages 16 and 12), PA, SA, Aspergillus, Achromabacter, GERD, CFRD, Asthma, Married 20+ years, FEV1 25% or lower, FVC 54%, living in Durham waiting to be listed at Duke.

  4. #4
    Senior Member
    Join Date
    Aug 2009
    Posts
    109
    Wow.
    I can't actually believe they have only listed you now, with you being on 4L of Oxygen at rest.
    That scares me to be honest.
    It's definitely time for you to be listed.
    In my naivety, I'm hoping to get listed before I need oxygen.
    I've been told because of my height (average) and my common as muck blood type (A) that they are confident that I will be transplanted within a year of being listed and therefore should leave it as late as possible to list.
    Is this similar to you?

    I get similar breathing attacks, where my lungs are so completely tight, that I can only just manage to get by.
    I'm dreading the next couple of months/years (?) to be honest, getting bad enough to be listed.
    Do you feel a sense of calm now that you are listed?
    If it was my choice, I would like to be listed today...

  5. #5
    Kyeev, I am not listed, yet. You have to do a month of rehab at Duke and educational classes. Since the initial testing I did was more than a year ago, I have to redo a lot of it over the next couple of weeks. After all that, there is still no guarantee of listing. However, once I get listed, there should hopefully be a fairly quick turnaround time. I dont know of anyone with CF that has been listed prior to needing oxygen. That is one of the categories that your LAS score takes into account. I have type A as well, and thankfully I think they said my MHC antigens were a pretty easy match too. (have you had those looked at?) Frankly, most of my local CF friends werent listed until they were on about 6-8 L at rest and pretty much couldnt leave their house, so I feel somewhat premature. But I trust Duke's assessment. They've done a a really good job so far.
    DDf508, 46 years old, 2 daughters (ages 16 and 12), PA, SA, Aspergillus, Achromabacter, GERD, CFRD, Asthma, Married 20+ years, FEV1 25% or lower, FVC 54%, living in Durham waiting to be listed at Duke.

  6. #6
    Senior Member
    Join Date
    Aug 2009
    Posts
    109
    Oh I see. Well hopefully you will be listed next month.

    No, I haven't had my MHC antigens looked at yet.
    Still at the stage of getting all my CT scans and abdomen ultrasounds and cardiograms data updated.

    I have heard of a few people who been listed because of frequent exacerbations and needing to go on IVs every couple of weeks (but didn't need oxygen).
    Also, I get haemoptysis and only have one functional lung (with other one collapsed) so am hoping they won't let me deteriorate too much as I have no reserve lung.

    What are the classes for? How to manage treatments post-transplant?
    Easy for us with CF as we are used to a massive burden of care. Probably not at all easy for a COPD/smoker or Idiopathic Fibrosis patient.

    Please keep me updated on how you are doing!

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