Diagnosed at the ripe old age of 38

Hello everybody, my name is Cathy and I live in beautiful South Carolina. I’m 55 now so I’ve lived with emphysema for a while.

I had lung reduction surgery on both lungs in 2006 at age 44 which helped me immensely for 10 years!! I forgot that I had emphysema except taking my inhalers twice a day. Unfortunately the benefits of the surgery has run its course because now I KNOW I have the disease.

The main reason I’m posting now is I’m wondering what my next step is? I’m on oxygen at night and my FEV1 is at 1.07 as of November. When does a person start inquiring about a transplant or what else is out there? Is there anyone out there that can fill me in on the road to a transplant?

Thanks in advance,
CathyinMB

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Comments

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  • CathyinMB author
    2 years ago

    I was supposed to have an appointment with a new pulmonary doctor this past Thursday but unfortunately I was called on Tuesday and told that my insurance is not set up to be accepted. Because I had been waiting since November for this appointment I am a little frustrated. So now I am going to pursue finding a pulmonary doctor closer to MUSC. Fortunately I have not had any problems so I don’t feel there is an urgent need to get into see someone but I know I can’t go without a pulmonary doctor. For now I am looking at different pulmonary doctors, i’m not sure how to go about picking one. Any suggestions? I appreciate any suggestions, CathyinMB

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    Hi CathyinMB. I’m so sorry to hear about the frustration you experienced when the doctor’s office advised your insurance had not been ‘set up’ as yet. I can only imagine the reasons they may have given you for not having had this done since November of last year! Maybe it will all turn out for the best since now you can look for a doctor who may be even more suitable for your care. I thought you might find it helpful to read over this material on ‘the right doctor’: https://copd.net/caregiver/finding-the-right-doctor/ Once you’ve found the right doctor for you, I thought this article might give you some ideas as to what questions to have prepared to ask: https://copd.net/living/questions-for-pulmonologist/ Please check back with us and let us know how you’re doing. All the best, Leon (site moderator)

  • CathyinMB author
    2 years ago

    Hello Everyone,
    I had a heart stress test last week and was able to stay on the treadmill the full 3 minutes! I was really nervous about being able to do that. Anyway, my primary doctor said the results were perfect! I’m assuming that means that my emphysema has not taxed my heart in any way. I see my new pulmonary doctor in a couple weeks, are there specific questions that I should ask of him to know if he’s on the ball with the latest treatments and such? I appreciate your input.
    CathyinMB

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    Hi CathyinMB. I will echo what Lynn has said and congratulate you on taking your stress test successfully.

    Moving on to a specialist is the next logical step and it’s good to see you have an appointment in a few weeks.
    Besides Lynn’s excellent suggested questions, I thought you might find it helpful to review these two articles.
    First, this one on ‘questions for your pulmonologist’ from one of our contributors, Tonya Hidalgo: https://copd.net/living/questions-for-pulmonologist/
    And second, this excellent material on ‘improving communication with the doctor”: https://copd.net/living/tips-for-improving-communication-with-physician/
    Please be sure to check back with us and let us know how you’re doing.
    All the best,
    Leon (site moderator)

  • Lyn Harper, RRT moderator
    2 years ago

    Hi CathyinMB,

    Congratulations on the good stress test results! It’s good to hear you’ll be seeing a pulmonologist and it’s wonderful to know that you’re already preparing for the appointment. You have no idea how unusual that is.

    Here are a few suggestions I have for questions you might consider asking:

    1. What are the results of my recent tests?
    2. Do I qualify for Pulmonary Rehab and do you recommend it for me?
    3. What do you suspect my worsening symptoms can be attributed to?
    4. What other tests will you conduct to rule out/confirm a diagnosis?
    5. What complications may result from my condition?
    6. What course of treatment do you suggest for me specifically?
    7. What side effects can I expect from any new medications you may be putting me on?
    8. If the medications don’t work, what other options are there?
    9. What resources would you recommend where I can find out more information on my condition?
    10. Do you have a support group through your office or hospital you’re affiliated with?

    I wish you the best.

    Regards,
    Lyn (site moderator)

  • Lionsmane
    2 years ago

    Hi Kathy,

    I lived with COPD since 1978. I had 3 exacerbation (2006, 2013 and 2016). I almost died at the one in 2016 and that provoked me to seek out lung transplant. I knew I could not continue to live my sedentary lifestyle and avoid crowds of people. On August 12. 2016, I became a proud recipient of new lungs. I am 5 months out and would do it again. I now have a quality of life. Lifetime drugs but I can breathe. I am in Phoenix and I have heard Duke has an excellent lung transplant program. I wish you the best of luck on your journey!

  • CathyinMB author
    2 years ago

    Awww I’m so happy for you!! It sounds like you weren’t on the list long or were you? Do you mind me asking how old you were and how you prepared yourself? I’m good for now but as someone else said it can take just 1 exacerbation to put you in the running…so to speak. Thanks again and I’d love to see your story posted and updates on your progress!! CathyinMB

  • Jenn Patel
    2 years ago

    Hi CathyinMB –

    I thought you might also be interested in this series by our writer Tonya, it’s all about “the road to a lung transplant”, as you mentioned:

    1 – https://copd.net/living/lung-transplant-evaluation/
    2 – https://copd.net/living/transplant-evaluation-request/
    3 – https://copd.net/living/the-lung-transplant-evaluation-team/
    4 – https://copd.net/living/waiting-lung-transplant/
    5 – https://copd.net/living/denied-a-lung-transplant/

    I hope this is truly helpful.

    Best,
    Jenn (Community Manager, COPD.net)

  • CathyinMB author
    2 years ago

    Thank you for the links, very informative. I think having gone through LVRS myself, another lung surgery scares me to death!! That was definitely not an easy surgery and I was 10 years younger. I have to say the articles are making me aware of getting my butt moving outside and taking notice of how my diet has become not the greatest. So with this being January of a new year I’m going to focus on getting stronger and healthier in the hopes that if one day in the future I’ll need a transplant I will be ready for it physically. Thank you again and keep the information coming! CathyinMB

  • Erin Rush moderator
    2 years ago

    HI CathyinMB! I just wanted to echo Leon’s words and thank you for sharing a part of your COPD story with the community. Also, he provided you with a great starting place when researching lung transplants. Like Leon said, we are happy to help in any way we can, so don’t hesitate to reach out if you have more questions or concerns. Thank you again for reaching out and have a good night. Best, Erin, COPD.net Team Member.

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    Hi CathyinMB and thanks for sharing your life’s experiences with COPD since being diagnosed at an early age. Based on your inquiry, I thought you might find it helpful to review our articles on transplants. In order not to overwhelm you with all of them at once, I thought we could start with this one: https://copd.net/treatment/surgery-overview/lung-transplant/ If you’re looking for more, just say the word and we’ll be happy to provide it.
    In actuality, your physician should be your most valuable resource towards moving forward with dealing with the progression of your COPD. You can count on us for continued support, scientific information, anecdotal reports or just for a listening ear.
    All the best,
    Leon (site moderator

  • CathyinMB author
    2 years ago

    Thank you for the link. While it is a very scary surgery I know it helps a lot of people. When I see my new pulmonary doctor in February I’m going to bring it up to get his opinion. I will continue to gather as much information as possible myself.
    CathyinMB

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