Monday, July 9, 2018

Seven Years Of Living With A Parent With Pneumothorax

The reason I don't have proper family photos: both M and D do not like being photographed :P

After seven years, I thought I need to share our journey at home after my asthmatic-diabetic father was diagnosed with pneumothorax in June 2011. I have mentioned about it in passing several times in the past years, but this post would explain from the start. Perhaps there are people out there who need some information on how to handle this health problem, so I hope this post can be of good use.

The Beginning

Back in May 2011, D had short breaths for almost one week. At first, he didn't pay much attention because he has asthma, until he had to be hospitalized when I was at the office. D has never liked hospital, so when he was hospitalized, I just knew it was something serious. To help them reach the hospital, my parents asked a cousin. Oh, the trauma of hearing the news via cellphone and having to rush to hospital after finishing all my works quickly.

The doctors at first also thought it was an asthmatic episode, but after all asthmatic solutions (inhaler, pills, and inhalation session at the hospital) proved to be not working, they ran an X-ray on him and found that one of his lungs had collapsed at 50%. The doctors explained that it happened because a large amount of air was trapped in the chest cavity and press the lung. 

On a general set up, the doctors would perform chest drain or water sealed drainage, in which they would insert needle and pipe to the affected areas to allow draining of pleural space of air, blood and fluid, allowing expansion of lungs and restoration of negative pressure in the thoracic cavity. However, as D has diabetes, he was against the plan and we understood his concerns because people with diabetes need longer time to recover from open scars/wounds.

The doctors finally gave him medicines that he should drink everyday for 6 months to strengthen his lungs. It was probably one of the medicines for tuberculosis cases, but he decided to take it. Also, D had to come for health monitoring once a month. Six months later, the doctors declared that although the pneumothorax was still in his chest, it had been stopped to cause more damage. 

Some of the doctors' advices for D were: (1) enough rest, nutrition and proper breathing exercise; (2) no more physical exertion, such as walking upstairs and downstairs, or running, and (3) no emotional outburst, no more getting angry, as it would tire him out. I wanted to hug the doctors for advice #3 as D has always been an emotional man.

The Journey

It is not easy for D to accept that his body was never going to be the same again as it used to be. It is not also easy for M as she has to be with him for every health check up because he may need her to help her walk in and out of the car. 

The first year was tough and M often asked me to spend more time at home to give moral support to D. After a thorough thinking process, I decided that I need a job with regular work hours that allow me to be with them as much as I can. This was one of the reasons I gave up my permanent job in journalism.

For D's meals, the doctors require him to eat egg, drink milk and any other nutritious food. Along the way, M found that D developed a minor allergy against egg. So D could not have egg every day, three times a week is suffice. Then we also discovered that D was allergic to seafood. Perhaps the allergies were the results of his declining immunity. But when asked to drink virgin coconut oil, which was suggested by the doctors to increase the immune system, D refused because he disliked the smell. 

So what kind of food does D eat? Well, he usually have red meat, freshwater fish and chicken, but for the chicken, he prefers free-range chicken, which is more expensive than broiler. Sometimes D also refuses to eat, because his taste bud just felt bland. When that happens, and this often happens, milk is the only food he will take.

M can not go to supermarket everyday, so whenever I go to a supermarket, the dairy product shelf will be the first I check for promotion. My friends are always amazed to see me hauling two, sometimes up to four, bottles of milk when there is promo. I really hope that D would not develop a case of lactose intolerance, because both M and I would not know what to feed D if such thing happens.

Our extended family have given various health suggestions from propolis, habbatussauda (Nigella sativa) to other items, and D has tried everything. Unfortunately, he was not a patient patient (ha!). So if he has taken something for one week and felt nothing happened, he would stop having it. I told him that herbal medication might need more than one week to take effect, but he just would not listen.

When D has fever episodes, we give him boiled binahong leaves, which grow in the garden. Or lemon juice mixed with water. He already takes so many medication, so we try natural medicine whenever possible.

Also, around two years ago, the doctor finally told D to take insulin injection, instead of pills. D was very sad to receive the verdict, but it's mostly his fault that he did not take care of sugar blood level. The first few weeks of insulin injection had been a drama, but now he does it calmly while watching the TV show.

The ironic thing about D was: he refused to take minor surgery for pneumothorax, but he underwent a minor surgery for hernia in 2014. He did that when I was going abroad for work for almost three weeks, because he did not want me to be worried.

D sees the doctors every month for regular check ups. I am not talking about one visit a month, but three visits because he usually has three doctors: a pulmonologist for his lung problem, an internist for his diabetic problem and a general practitioner for any health problem, including allergies. The pneumothorax is still in his lung, and the regular check up is important to see whether it makes a nasty comeback or not. Sometimes he needs to see a dentist too. I am very grateful for the National Health Insurance (JKN-KIS) and BPJS Kesehatan as it has helped me so much on free health services.   

On emotional outburst, D still has it. He gets angry at anything, such as when M was slow to help him out of the car, when M held his hand to make sure he did not fall, when M told him to eat, when M forgot to remind him to take medicine, etc. I understand that the emotion is the result of him feeling helpless. When those outburst happens, the best way to handle it is to be silent and leave the room. How does M take it? Sometimes she just comes to my room and just checks to see what I do, and when I look at her face I just know she needs to vent. 

Both M and I realized that D needed to have fun, so we let him to meet his best friends. Although he is such a charming person, D only has four best friends that he could confide in. And all four of them have passed away in the past seven years. It was a huge blow for D, as he was always the sick person among his buddies. He always thought that he would die first, and he had told me since I was a very young child to be independent as he could die anytime. Witnessing the passing of his best friends has taught D that a person can be ill in the whole lifetime but no one knows their final day on earth. 

Where We Are At The Moment 

Nowadays D's activities are mosque-centered. He drives the car to mosque five times a day, sleeps and eats in between pray times, and just does small activities around the house. If anyone asks how is D, I can only say that he is just the way he is. He's not that ill that he can not move, but he's not that fit to walk to mosque, as I mention above "he drives the car".    

Also, by going to the mosque, he meets other men in their 60s-70s and has made new friends. His new friends have their own health problems and they would share information on health tips, medicine, etc. At least he now has another support system.

We have never wanted pneumothorax to come to our home. But since it has been here, I'm simply grateful that we have passed the past seven years quite successfully. I hope that everything goes smooth and according to Allah's will.

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