Zakia Nadir: Transitioning to Oxygen Full Time

January 29,2018

The real problem with this disease is that we don’t exactly know when an emergency will occur. Pain upsurges and lingers on for unknown periods of time. It stays there constantly, and nothing soothes it. We spend many bad days waiting for a few good ones. Yes, we do get moments feeling somewhat better, but soon it starts getting worst.

A few months ago, I flew back to Jeddah from Pakistan, when my condition worsened. I thought I was just fatigued because of the journey, and taking some time to rest might release the stress on my mind and body. As the week passed, my condition continued to deteriorate instead of stabilizing. Every time I checked, my pulse-oximeter flashed numbers between 60 and 80. At first, I thought there was something wrong with my oximeter, as I was taking enough supplemental oxygen to restore my levels. Unfortunately there was nothing wrong with the oximeter.

My nights became more restless and sleepless. I would hardly sleep for 40 to 50 minutes and the breathlessness, body twinges, and low oxygen concentration in my blood would cause me to wake up. It would take a couple hours to stabilize and fall back asleep. I never slept more than an hour during those agonizing days.

As my condition was not improving, I booked an appointment with my physician, Dr. Ghari, for the next week. In the meantime I started feeling a slight stabbing in my right upper abdomen. It was near my stomach, but I was very sure it was not stomach pain. In the beginning it was tolerable, so I waited the whole day hoping it would go away. The pain was severe the very next day. My husband, Nadir, and I decided to go for an outing in an attempt to make myself relaxed at a peaceful and calm place.

Fortunately it worked and gave me little relief for a few hours. Later, the pain started again and it was very intense this time. I wanted to sleep, as it was the only possible way for me to escape the pain. Malfunctioning and enlargement of my heart, caused by sustained high pressures in the right ventricle, had already forbidden me to sleep on my right side. On the other hand, that pinching abdominal pain prevented me from sleep on my left side. Sleeping straight on my back caused me discomfort as well.

Left with no option, I desperately tried to figure out a comfortable position to sleep. Nadir tried all he could to comfort me, but it was all in vain. I knew this hassle was not going to end here.

At about 7 a.m. the pain was absolutely unbearable. I lost all my strength and patience and ended up screaming. My appointment was scheduled for the evening, however, after consulting Dr. Ghari on phone, Nadir decided to take me to emergency room right then. I was immediately attended to in the examination room. Since my oxygen saturation had dropped to a very low level, I could read from the expressions on the faces of medical team that my condition critical.

The doctor put me on ten liters oxygen, and attached two oximeters on my both hands. Even after a long while, the figures still didn’t reach a satisfying level. Almost every doctor in ER came to me, looked at my saturation level, checked the oxygen flow, and then put the oximeter on his or her own finger, wondering if it was even working. This exercise of every doctor coming to see me was amusing. After two hours of being in the ER, my stats improved ranging between 88 and 92.

Surprisingly, my abdominal scan, CT scan, and blood test reports were all normal. The whole day passed and I was kept unaware of the reason for my low saturation and abdominal pain. On my inquiry, the doctor explained that the pressure inside my heart increased abruptly, further putting stress on the right upper quadrant of my abdomen. He also added that he urgently needed to adjust the dosage of a new medication for me. Because of this, I was admitted in the hospital for an undefined period. We also needed to work out with our medical insurance provider if the treatment and new medicine that was going to be added was covered in the current plan or not.

Unfortunately, the medical staff didn’t have anything that could relieve my pain at that time, so I was shifted to a ward. Even after two days my condition was the same. I was taking 10L oxygen 24/7, but was still not able to sleep well. One temporary solution was to give me diuretics, but that was only possible if my pressures could stabilize.

Another day passed and there was still no news regarding availability of required medicine. Since I was not being given any kind of treatment there, I had no reason to stay at hospital. Just before making the decision to leave, I requested to the doctor on duty to contact my physician one more time to discuss again my situation. After a discussion, it was determined not to discharge me until my oxygen dependency reduced from 10L to 5L, at least. I was really fed up with the pain and being confined in the hospital was even more horrible.

Frustrated by all this, I asked a nurse to give me diuretics regardless of the fact that my BP was 80/50, and diuretics could cause serious harm in the long run. I insisted on taking it at my own risk with just one wish in my heart, which was to get rid of the cruel, relentless pain. Finally, with my physicians’ permission I was given the diuretics.

As my fluid retention lowered, I experienced some relief, and managed to sleep well. The next day, my oxygen dependency reduced to 5L, and the next day to 3L. Dr. Ghari came to meet me and discussed further possibilities for a long term solution. He recommended that I take oxygen 24/7 at home without any exception or negligence. He also affirmed that this dependency on oxygen is now a permanent part of my life. The only option left for me is to have a double lung transplant which is only possible in the USA or UK at a very high cost.

I was discharged from hospital. My heart pressures, pulse, and breathing were somewhat under control now, but I was no longer able to do any of my household chores. Not even cutting an apple. Nadir took a few days off from work to take care for me, day and night. Another week passed as I took full rest, but I was not able to live up to my normal everyday routine. One day it broke me from inside when I saw Nadir in kitchen doing dishes. I forgot the promise of staying strong, and cried like a baby. I murmured that I would never be able to get back to my life, to be able to do household work again, and to be able to be a helping hand for my husband.

He came to me and tried to assure me that everything was going to be fine. He said, “You just need to take a little more rest and some extra care, inshallah (God willing) you will get better.” But this time, my doubtful heart was not ready to accept what he was saying. “Your life is getting tough because of me,” I added. He looked at me, smiled and said, “You know! As a matter of fact, all the easiness and brightness of my life is because of you.”

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