My PH Story: Zakia Nadir

October 10,2017

My name is Zakia Nadir and I am from Pakistan. Nearly 3 years ago my life changed totally. I was diagnosed with a severe type of pulmonary hypertension, primary pulmonary arterial hypertension. My doctor said to me, “You are rare between the rares.”

In September 2012 at the age of 27 I went to Australia to join my husband (he was studying there). When I left Pakistan I was perfectly alright. But, five or six months later I started feeling short of breath while climbing stairs. I visited a doctor and went through some blood tests and an ECG, but everything was alright. My doctor said it might be psychological as I was away from my family. After that I started working, but my capacity to walk and work started decreasing gradually. And usually had pain in my legs and left arm.

In July 2014 I came back to Pakistan with blue lips and nails. My sister rushed me to the doctor to find out why. He thought it might be anemia, but blood reports said no.

… it’s a rare and highly progressive disease, there is no specialist of it in Pakistan

He suggested that I visit a pulmonologist and also suggested to take a chest x-ray while visiting him. X-ray report showed mild cardiomegaly, so we decided to go to heart specialist instead of a pulmonologist. I saw Dr. Azhar Mehmood Kayani at Rawalpindi Institute of Cardiology. After seeing my ECG, he said there was a genuine problem with my heart. He sent me for an echocardiography. After getting the results he said, “Your heart is enlarged and you have to go through a surgery as there is a band in your heart. Tomorrow we will perform another test and then we will decide further.”

The next day I went through a transesophageal echocardiogram and was diagnosed with idiopathic pulmonary hypertension. Dr. Kayani suggested a catheterization for me to find out exact pressure. I was given a right heart catheterization and my pressure was 68.

I never thought that I would complete a year with this disease because what I have come to know about this is it’s a rare and highly progressive disease, there is no specialist of it in Pakistan, required medicines are not available, and some are totally banned. I also thought if I would not die within a year people would get tired of me, and that was horrible.

I pray no one should feel my pain. I never ever want that.

Its now been more than three years living with this. I am very thankful to Allah who has surrounded me with so many loving and caring people.

This journey is not easy. It is very difficult, not because I know that there is currently no cure for PH and it’s a progressive disease, which means it can advance quickly and, if left untreated, the disease can be life threatening within a couple of years. But, because of the pain and limitations of life and most importantly when I see the ones who love me worry when they see me in pain. I always wish that people would understand what I am going through, but I pray no one should feel my pain. I never ever want that.

I feel blessed to have these years of life.

In spite of having pain, frequent visits to the hospital, being surrounded by medication and sometimes not being able to move without a wheelchair, I actually live a life. Yes I must say I actually know the value of life, whenever I have a good day or a few good hours, we (my dearest husband and I) celebrate it. We laugh more than we used to. We ignore negativity. We worry less and enjoy more. I feel blessed to have these years of life. My husband and my parents are the three most important people in my life, and if they did not show the courage they do, I may not have been able to get through this so easily.

I don’t know how much time I have now.

Currently, my condition is worse. My current pressures are 120. I am unable to have access to advance medications. I need to be on a transplant list, but it’s not available in Pakistan. I don’t know how much time I have now. My doctor, during my last visit, after listening to all my symptoms said I can only pray, and may Allah make this easy for me.

I really didn’t know how special I was before this diagnosis.

I want to thank all my family and friends for the love and care they have given me. I really didn’t know how special I was before this diagnosis. I know I am not able to return anything to you all, but I pray to Allah that he will bless you all for your every single word and act of love and care.

Life is a great blessing. If you are healthy, believe me, you have no right to complain about anything, if an ill person can manage to live with smile, then a healthy person has far more capacity to make things work for him or her, but unfortunately we ignore our capacity, and start complaining about minor difficulties in life.

… don’t ignore the caregiver

I ask you all, if you see any person who is suffering from a chronic illness, yes, definitely he or she deserves a salute, but also don’t ignore the caregiver, the one who makes it easy for the patient to live with some quality. If you can’t be helping hand for them at least respect their journey.

May Allah bless you all. I feel sorry for anyone who faces any inconvenience in life because of me. Please forgive me and remember me in your prayers.

If you live in or near Pakistan and want to talk about PH with her, Zakia welcomes your email to her at zakianadir@hotmail.com.

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