... Eefie's Beautiful Mess: My Story And Personal Experience With COPD (Chronic Obstructive Pulmonary Disease)

Aug 17, 2019

My Story And Personal Experience With COPD (Chronic Obstructive Pulmonary Disease)

Disclaimer

This blog post is very personal and written from my own perspective. I am not a doctor or health care provider, I am the daughter of someone who has been living with this terrible disease due to smoking and I only want to share my experience and my story for those who are going through the same thing or for those who just want to read my story. I'm not an expert, this is just a personal post, based on my own experience.

My dad has been living with COPD for almost 16 years now. I can't imagine what it's like for him and how much he suffers every day, even though he tries his best to hide his pain behind a smile and his sneaky jokes. He is such a crowd pleaser, my dad, always there for those who could use some positive vibes! I can't imagine what it's like to be out of breath all the time, to wake up in the morning with no energy at all. It has been tough, that's for sure, especially for him.

My dad is the strongest person I know. He is a fighter and he will always refuse to give up. I often thought I'd lose him, but he keeps on going, now matter how hard it is. If you read the disclaimer, you probably know that this is going to be a very personal post. It took me a while to decide whether I wanted to share this story or not, since this has been a huge part of my life ever since I was a little girl. It has been an emotional rollecoaster so far and of course, I had to ask my dad for permission.

My Story And Personal Experience With COPD (Chronic Obstructive Pulmonary Disease)

What Is COPD

COPD or chronic obstructive pulmonary disease is an incurable lung disease that includes emphysema, chronic bronchitis, and asthma and makes it massivily hard to breathe. Smoking is the most common cause of COPD, but air pollution and genetic factors also play a major role and can also be the cause of this lung disease. Their are 4 different stages of COPD; mild, moderate, severe and very severe.

• Mild: you barely notice any symptoms, you cough quite often and you have some mucus, but that's pretty much it.

• Moderate: in this stage, most people notice that their is something wrong and visit a doctor to get help. It's getting harder to breathe, especially after doing something active.

• Severe: you're basically out of breath all the time and you can't do normal exercise anymore.

• Very severe: your airflow is limited and you barely have the energy to walk from one room to the other. Even something simple - like going to the toilet, for example - feels like you just ran a whole marathon.

The beginning (stage 2)

My dad used to smoke 3 (sometimes 4) packages of cigarettes a day, so I guess I don't have to tell you how he got COPD. Like most people, he was already in the second phase when he decided to finally visit a doctor. He had this annoying cough that didn't want to go away and he noticed he got out of breath very easily. My mom told him to go to the doctor because this wasn't just an ordinairy cold. I was pretty young back then, so I didn't realise how serious it was.

When he was diagnosed with COPD, he immediately stopped smoking. He knew it wouldn't end well if he would've decided not to listen to the doctor. The doctor explained that there is no cure for this disease, but that they are able to control it for as long as possible with medicines and physiotherapy. He explained the 4 stages and he also told us what we could expect in the future. It was ugly and we knew it was not going to be easy. He would become weaker and weaker, get one bronchitis after another and eventually, they wouldn't be able to help him anymore. I literally feared for the worst.

The first couple of months after being diagnosed

I barely remember the first couple of months after he was diagnosed, but I do know that the symptoms didn't got any worse yet. My dad needed surgery on his shoulder because he has been in an accident with his scooter many, many years ago and his shoulder had started to hurt again. I can't remember what was wrong with his shoulder, but I did know that it was a risk to give him an anesthetic because of his COPD. That is what the doctor told us.

It was already dark when we got a call from the hospital the day he got the surgery. My mom had to take care of me, so she couldn't stay in the hospital with my dad. She started to cry when she was on the phone and I totally panicked because I knew there was something wrong, something bad happened, I just felt it. I finally started to realise how bad it actually was and it just smashed me in the face like a b*tch.

Apparently, one of his lungs had collapsed during surgery and they had to insert a thick probe between his ribs all the way into his lung as quick as possible in order to literally save his life. Back then, I didn't understand what a collapsed lung was and I thought he was going to die. I think I've never been that scared in my life before. I just wanted to be with him, but it was already late and I actually had to go to school the next day. (A few years later, I asked him what a collapsed lung felt like and he told me he just couldn't breathe anymore. It felt like he got hit by a truck and it was the worst feeling ever.)

He had to stay in the hospital for a few weeks because they had to make sure that everything was alright before they released him, but everything changed after his release. He got weaker. He got sick quite often and his immune system was no longer able to protect him against bacteria and viruses.

Stage 3

Over the years, his condition only got worse. He was forced to quit his job because he didn't had the energy to work anymore. His muscles got weak and he also lost a lot of weight. These were the horrible side effects from the meds he had to take, but he had to take them in order to keep his COPD in control and to keep him out of the hospital as much as possible.

It became harder for him to go out for a walk, so the doctor advised him to get a rollator to make things a little bit easier for him. It is important for him to keep moving and this has helped him a lot already over the years. He isn't as fast as he used to be, but that doesn't matter. All that matters is that he is still able to go outside! Fresh air is really good for him.

The scariest thing about this illness are the moments when he is sick and eventually have to be brought to the emergency department from the hospital. It is even harder for him to breathe when he is sick and it has happened before that his lips and fingertips literally turned blue due to the lack of oxygen. It can happen so fast and it is the scariest thing ever.

One time, my mom and I went to the centre of the city to do some shopping and we had such a lovely time. When we came home, my dad was sitting in the couch, gasping, totally out of breath. His lips and fingertips were blue, his face was grey and his eyes were so red. I'll never forget that sight because it was horrible to see! My mom immediately called for an ambulance and in less than 5 minutes, they were already in front of our door to take him with them.

My Story And Personal Experience With COPD (Chronic Obstructive Pulmonary Disease)

Stage 4

December, 2017

The last time my dad had to stay in the hospital, it took him 2 months to get back on his feet. The doctor eventually had to admit that they did everything they possibly could, but that he wasn't able to help him anymore. It hit us in the face. We knew it would've come to that point sooner or later, but we all wished that there was still something the doctor could do. He just didn't know what or what else he could give him because my dad already took all the medication he could possibly take. I was so sad and angry because it felt like - after all these years of fighting, struggling and trying to stay strong - he gave up on my dad. We were devastated. My dad always tries to stay positive, but that time, it just felt like he had lost all his hope. It was so sad to see him like that, it literally hurt.

I thought he would never get out of the hospital after hearing this terrible news, until the doctor decided to have a serious conversation about getting a lung transplant. He talked about it before, but my dad has always been against it because there are too many risks, especially at his age, even though a lung transplant is probably the only thing that could really help him. My dad had to agree eventually and so, his journey to new lungs begun.

The road to a transplant

August, 2018

He considered making an appointment with one of the professors of the UZ (Universiteir Ziekenhuis or University Hospital) of Leuven in Belgium to discuss his current condition. It was a great decision to talk about it with someone who specializes in lung transplants because the doctor gave us an insight into the procedure and explained everything we need to know about the transplant.

After his first appointment, the professor had to run some tests to see if my dad is physically capable to undergo such a complex surgery. It is important that all his organs function properly and that he doesn't get sick while waiting for a donor, so the professor advised him to do physiotherapy again and to take antibiotics to keep him out of the hospital.

My dad already had to stay for 2 days in Leuven. The first day, he got a bunch of information and the second day, he had to run a few more tests. He learned a lot about lung transplants and he thought it was really useful. He was pretty nervous about a lung transplant at first because he just didn’t know what to expect and that is probably also the reason why he was against it in the beginning. Now that he received all the information he needs to know, he finally has hope again and he is acutally looking forward to it.

August 2019

My dad is currently waiting for a donor and he is doing great so far! He has to go to his physiotherapy 3 times a weak and he takes his antibiotics every day to stay out of the hospital. He hasn't been sick ever since his last hospital stay in December, 2017, which is truly amazing and I'm so happy for him! I feel like his COPD gets even worse every time he has to stay in the hospital for a few weeks, so I'm really glad he is doing fine and that his COPD is stabilized again.

Since he is still waiting for a donor, I'm not able to share the rest of the story yet because right now, the only thing he can do is wait for that one hospital call that will change his life. I'll definitely write about the surgery and the recovery and share it on here when he got his lung transplant. Hopefully, it’ll be a happy ending, but I try to stay as positive as I can, so I really think everything will be fine!

It felt good to write about this because it is such a huge part of my life. Thank you for taking the time to read my story and I would love to know if you or anyone close to you has been through or going through something familiar like this. Let me know in the comments down below and share your toughts!

Share your support!

Lots of love, Eefie ❤

Sources:
- https://www.copdfoundation.org/What-is-COPD/Understanding-COPD/What-is-COPD.aspx
- https://www.mayoclinic.org/diseases-conditions/copd/symptoms-causes/syc-20353679

2 comments:

  1. Your post really hit me in the feels! My dad has pulmonary fibrosis, and last year, literally almost an exact year ago, he underwent a double lung transplant. It was honestly one of the scariest things my family and I have ever gone through. But it was successful and he's doing so much better! (We're actually having a party for him in a week to celebrate his surgery and recovery!) I'm so sorry your dad has COPD and is going through all of this. I'm glad he's taking his meds and is doing everything he's supposed to while waiting for his lungs. I hope he gets them soon! Please keep us updated on everything and tell him we're all rooting for him!

    Emily | https://www.thatweirdgirllife.com

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    1. Thank you so much for this comment! It literally gives me hope to know that your dad had to undergo the same thing and is doing great now. I keep my fingers crossed and I'll definitely write an update when my dad had the surgery.

      Lots of love,
      Eef.

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