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53 Years Old with End Stage

I am 53 and was diagnosed in 2012 with COPD and all the other stuff that comes with it!

January 2016 I was sent to UCSF for DOUBLE LUNG TRANSPLANT and after 60 tests I was told by the transplant doctor that I had 18 months to live and here we are over a year later and still have not been listed nor have an answer when!

Talked with several different doctors at UCSF and nobody will give me an answer. I have visited my local doctor and they both say the same thing – all we can do is make you comfortable! You’re dying ! I asked doctors at UCSF about time left and they all say the same as first doctor, so what do you do? Give up on hope and prayers? Not sure! I can say I have lost hope that UCSF will save my life! FRUSTRATING!!!

Would love to hear if anyone else has had the same problem as mine and if so how the heck you get through the day after you have lost hope and will and now you’re just waiting to pass!!! Frustrated in CALIFORNIA!

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Comments

  • PhilJ
    2 years ago

    Man do I ever understand your frustration They tell me I have stage 4 COPD and I to have what I call a medical merry go round. I have just turned 60 I try to stay active much as possible and STAY POSITIVE NO MATTER WHAT LIFE THROWS AT YOU STAY POSITIVE. Make sure you have your life right with GOD and you want have this problem in the after life……… Praying for you………..Phil J

  • breathinstephen
    2 years ago

    I just completed the transplant evaluation at UCSF as well. Though my diagnosis is a little different than yours ( I have severe asthma), they’re using the same listing criteria used for people with COPD. Even though my disease progression is labeled “end-stage”, Im still considered too healthy for listing at this time. The benefits of transplant simply don’t outweigh the risks for me at this time, but they probably will in the near future. Going forward, I will check in with the transplant team 3 months to see if anything has changed.

    If you havent all ready, I would get a hold of your coordinator and tell them about your concerns. If you’re evaluation went the way mine did, you probably saw several different transplants doctors, all with different personalities and viewpoints on transplant. Have your coordinator schedule an appt with one of them to get a final answer. Good luck!

  • Guz
    2 years ago

    One thing I can tell you about your copd…Exercise…I joined our adult wellness center almost 2 years ago. I go and work out 6 days a week. No one can do this for you. So get busy. It will greatly improve the way you feel. Plus the socializing with others will help.
    I have stage 4 copd, or so I am told. I was on life support twice. I ended up having a stroke, a seizure and coughed so hard it caused a tear in my brain. That was in December of 2014. After that I ended up in a hospital with pneumonia. I had a pulmonary doctor come in and look me over. He told me I would more than likely go home with Hospice if I went home at all. I told him I had more faith than that. He informed me that he had treated many people with faith. I got rid of him and now have a wonderful Pulmonary doctor. As well as a great internal medicine doctor. I am very thankful for my faith and the ability to recognize the fact that if I want to feel better, I got to get out and exercise. I also try and help others. We also have a monthly copd group meeting. Maybe you can find one for yourself, or start a group and get involved with that. But the best thing is having faith. Never Stop Believing…and getting up and doing something about it. Not waiting for someone to try and do it for you. That is what works for me. I am not trying to criticize. Just letting you know what works for most of us.

  • Mendo Bruce
    2 years ago

    I understand your frustration but most transplant centers try to delay surgery for as long as possible due to the very great risks involved in the surgery. 1 year processing is not unusual for ANY facility.

    Part of the processing is testing to see how compliant and motivated the patient is, do they keep coming back for the tests? do they continue to exercise? have they allowed depression to consume them?

    You should look at the fact that you are still not listed as a positive! It means your condition has not deteriorated as quickly as they feared it might. You won’t be listed until they feel it probable that you have a year or less left. As long as 18 month survival holds, just keep on going with the tests and try not to get to frustrated.

  • Tonya Hidalgo moderator
    2 years ago

    eby1jjd,
    I am in complete agreement with John. No one knows when your time will come. That being said, I have been on the caregiver side where you are. My mom’s doctor would answer her questions about how long, but she always prefaced it with no one knows exactly when. The thing is that if you give up now, you will most likely prove them right. My mom lived longer than most with her lung capacity because she never gave up! Even in the last few months / weeks, she fought. She kept trying. There were times that she surprised herself, and there were times that she was disappointed.

    As far as being listed, I believe that you should be able to get an answer as why you have not been listed. If you were approved to get a transplant, you may need to have a conversation with your patient representative, to find out why there is a delay. If it is because of something at that facility, you may be able to find another place to transplant.

    In answer to your question, what do you do now? You live. You keep pursuing answers and trying to move the transplant along, but ultimately no one is guaranteed tomorrow. Enjoy your family and friends. Make memories, laugh more, and prepare your heart for the future.

    You have a fight in you. It is obvious in your comment. Use that to keep fighting!!!

    Praying for you,
    Tonya Hidalgo (moderator)

  • eby1jjd author
    2 years ago

    Thank you Tonya. I can not get a straight answer theyeven have went as far as getting the transplant surgery approved by my insurance company and it was approved but every time I ask about listing the double talk starts up from nurses to doctors very frustrating ! All I need is a yes or no and if no I can find another doctor and hospital the only thing that has changed is I went from stage one to end stage and I am honestly going down fast ! To say what I can not go is easy ! Everything breathing is a. Battle I awake every morning fighting to breath and go to be fighting to breath the decease gets stronger and I get weaker !
    But if they want to get me they are up for the. Ingest fight they have ever had ! Very tired and frustrated but I am not going out that easy I will give them a fight they want forget thank you again Tonya. Joe

  • John Bottrell, RRT moderator
    2 years ago

    I would have to say I completely agree with Leon. I also want to say that, while doctors should absolutely be realistic and forthright with their patients, they also do not know how long a person is going to live. That said, i would like to refer you to another article written by one of our writers. Hope this helps. John. Site Moderator. https://copd.net/living/end-stage-the-most-dreaded-misunderstood-misinterpreted-misused-destructive-term/

  • eby1jjd author
    2 years ago

    Thank you Leon for comments ! Eby1jjd. And I am going to look at other options that I might have ! Just real tired of double talk from those doctors ‘ decease getting worse and doctors continue to push back transplant ! I am trying not to lose hope with it but to be honest it’s so frustrating !thanks again cto everybody for comments.

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    We hear you, eby1jjd!
    I’m sorry to hear of all the challenges and difficulties you’re facing dealing with this diagnosis, planned care and treatment. It is frustrating for certain and we understand. While you may receive feedback from our online community, I thought you might find it helpful to review some of this published material on lung transplants. We have a wealth of information on the topic which you may find invaluable as you move forward. This link will provide access to all the articles: https://copd.net/?s=transplant&submit=Go

    As well, if you’ve lost confidence in the medical team that is currently providing your care, you may want to look for an alternate group of specialists. It looks like you’re in a big city on the west coast. There should be other local experts who can look into your condition and particular situation. This article may assist you in making a decision whether to look for another doctor: https://copd.net/answers/expert-answers-a-second-opinion/

    Please check back with us and let us know how you’re doing.
    Wishing you the best,
    Leon (site moderator)

  • 1215n8
    2 years ago

    I am sorry to hear that you are so frustrated with your care. I was diagnosed in 2005 with end stage and told I would not make it 2 years on the lungs I have . I go to Cleveland Clinic and have since 2006 . The longer you put off a transplant the better. I have been totally ready and then got better . Exercise is very important and it does matter more than I can say. I refuse to give up and although sometimes it is very hard to stay positive. Have had this disease over 25 years so you can fight it.

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    It’s our pleasure, eby1jjd. I see that Tonya has posted advice too, She has a vast amount of experience caring for her Mom, who had COPD. You may find her advice is helpful for you as well.
    Warm regards,
    Leon (site moderator0

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