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letter on table addressed to family

A Letter To My Family About COPD

Dear Loved One:

Sometimes it’s difficult to talk to you, to tell you what I feel, to tell you what I’m going through.

I have COPD, which stands for Chronic Obstructive Pulmonary Disease. It is the third leading cause of death. COPD is usually caused by smoking – not always though. Sometimes it’s caused by second hand smoke, by pollution, chemicals and even dust. It may even be genetic.

How did I find out it was COPD? I had a test called a pulmonary function test. This test tells the doctor about my lung volume, as well as other factors. With this, the doctor is able to gauge what stage of COPD I am in. Some places like the Mayo Clinic go by 3 stages: mild, moderate and severe. You also may hear about 5 stages where the 5th stage is Congestive Heart Failure. Most places go by the Gold Stages of COPD, which have 4 stages:

  • Stage 1 = Mild 80% and greater
  • Stage 2 = Moderate 50% – 80%
  • Stage 3 = Severe 30% – 50%
  • Stage 4 = Very Severe 30% and below


COPD is non-reversible, meaning it will never go away. However, I hope to slow the progression of my disease. I may need your help and encouragement with this.

I have finally quit smoking and wish that you would too. I don’t want you to get this disease. I also need to protect myself, so people that smoke need to go outside, then I’m not breathing in more of the toxins.

Please, I care about you and your health too.

Some people with COPD are overweight and some are underweight. Both of those can affect our health. It’s so important to have a nutritious diet. As COPD progresses, a person will possibly lose weight and need to gain the much needed pounds and muscle mass. Breathing does burn calories, then it’s more difficult to maintain. Also affected can be the immune system.

So you can see how important it is for us to take care of ourselves.

It’s so hard on the down days to feel up to cooking, then just a quick snack or having someone drop off a burger sounds best. Wholesome not always. It’s great that there are some programs for those needing meals brought in like “Meals on Wheels” in the USA. Wouldn’t it be nice if that was available everywhere?

Exercise is so important.

    • It helps with breathing
    • It helps to strengthen heart and lungs
    • It helps with our muscles, joints, and circulation, it gives us body strengthening as well.
    • It helps to strengthen the upper body, which supports lungs and heart
    • It helps to combat anxiety and depression

Maybe you want to exercise with me, we could be exercise buddies!

Medications are so important. There are different medications for COPD that I will take depending on the stage of COPD I’m in. The type also depends on things that I’m allergic to as well as types of other medications. I really need these medications and will need more when my COPD gets worse, to keep my airway open and more. High blood pressure and other things will cause us to take more medications too.

Please don’t get on me about, “Gee look at all those meds, no wonder why you are sick” and other comments.

It bothers me to take this many meds too, but breathing is most important. I need to take better care of my health and the goal is a better quality of life. I am living!

Did you know that I am seeing a couple of doctors? One is my regular doctor, a general physician that I see about my overall health. I’m also seeing a pulmonologist, who is now my lung doctor, who scheduled all of the testing. Sometimes it does seem like I doctor a lot. No, they aren’t taking advantage and just wanting my money, they are trying to help me breathe and feel better.

When I left the doctor’s office I was confused about things, I was scared and felt overwhelmed. I found a support group and others on the internet. They’ve been so good to talk to and really help me. They suggested that I talk to a therapist about my anxiety, plus I feel depressed some of the time. It’s scary not knowing what is happening with my life. That has been good, plus my COPD groups are so helpful, it’s good to talk to someone who understands. There are forums and places that just to ask questions. You can join some of these places too. Some you can be in the same sites I am, but some are just for families, friends and support people for you. I can only tell you a little bit about what it’s like with COPD and others might explain it better.

Did you know that oxygen is a medication? It is!

The doctor writes a prescription for that as well. Not everybody is given oxygen, even those that are stage 4. Only people whose oxygen falls below 89% for 5 minutes are put on oxygen. Some are only on at night and some 24/7. Being on oxygen doesn’t tell how bad your COPD is.

Since a couple of our other relatives had COPD, the doctor is going to test me for Alpha-1 Antrypsin Deficiency. That’s an inherited genetic disorder that affects the liver.

An LVRS is a lung volume reduction surgery. Sometimes the surgeon is able to remove the diseased part of the lung. Then the COPDer does much better because they are breathing from the healthier part of the lung only. A lung transplant is something that a person isn’t tested for until stage 4 – if that is something that a person wants to do, because it’s important that this person is in the best health they can be.

Did you know that I’m unique in my own disease? No one else is just like me. I have other health issues and am on different medications and have a different health history than anyone else. Whenever I think of unique, I feel kind of special. But with health, I’ll take what I can get.

It makes sense that they call COPD a family disease, because it does affect each of us.

The better you understand and accept me and my COPD, the happier and healthier we will be as a family too.

Love,
Your COPDer

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Janet Plank moderator author
    5 months ago

    Hi Mattie, when I have coughing attacks, sneeze or move at the wrong time, I have urinary incontinence. I was told they seldom do surgeries for that because of additional complications, so it’s best to practice and use the Kegel exercises. That can be practiced by going to the bathroom and stopping midstream. Once you see what that feels like, you should be able to do it anytime, such as when watching tv or even cleaning, anytime. That helps by strengthening the muscles that would stop or help alleviate incontinece. Has mine stopped it? No. I like to think that it’s improved.
    I haven’t had incontinence of the bowels. Hopefully someone can share their experience.
    Do ask your doctor about both and please, let us know what you find out.
    Have a breath-easy day.
    Janet (site moderator)

  • Gentlewinds
    5 months ago

    Is there a way to change the format of this newsletter to allow it to be read on tablets more easily? The articles always go to the left hand side of the screen and often I cannot read the first few words in each line. I have tried to minimize the screen but that does not work. I find the information very valuable but often become frustrated reading it. Thank you

  • Alesandra Bevilacqua moderator
    5 months ago

    Hi Gentlewinds! If you email us at contact@COPD.net we can further assist you. Thanks so much! – Alesandra (COPD.net Team)

  • Leon Lebowitz, BA, RRT moderator
    5 months ago

    Hi Gentlewinds and thanks for your post/concern about utilizing the website from a tablet device. I will pass your inquiry over to the site leads and I’m sure they will get back to you.
    Thanks for being a member of our online community.
    Leon (site moderator)

  • Mattie
    12 months ago

    Having issues with loss of control of bladder and bowles when having a breathing attack. Is this normal for severe copd?

  • floridatwigs
    12 months ago

    I thought i was the only one dealing with this… I’m glad to know it isn’t just me. I thought something is really wrong.

  • Leon Lebowitz, BA, RRT moderator
    11 months ago

    Hi again, floridatwigs and thanks for your comment. You are definitely NOT alone as others in our community have expressed similar sentiments when it comes to a lack of understanding on the part of their family and friends when it comes to COPD.
    Please know you are always welcome here in our online community.
    Best regards,
    Leon (site moderator)

  • Leon Lebowitz, BA, RRT moderator
    12 months ago

    Hi Mattie – we hear you and you are not alone! Other community members have expressed similar concerns when it comes to COPD and their bladder. I thought this article might shed some more light on this for you: https://copd.net/?s=embarrassing.
    I do hope you find it to be helpful.
    All the best,
    Leon (site moderator)

  • Janet Plank moderator author
    12 months ago

    Hi Mattie
    I would talk with your doctor about this. We do not give medical advice, I can tell you that some do have some leakage, but it’s different for each individual.

    I hope that you let us know what your doctor says.
    Janet (site moderator)

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