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.

Discuss the diagnosis process

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.

Explain why taking care of yourself first matters

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.

Diet and COPD

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.

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 important, too

    • 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!

My medications are helpful and necessary

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.

Understanding oxygen

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.

Accepting the condition together

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.

Your COPDer

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