After 6 years of being diagnosed with this disease, I made a decision to share out in the open of what is it like to be living with Pulmonary Hypertension.
For the first two years of being diagnosed, I’d have to admit that I was living in denial. I was thinking that NO, I’m not a pulmonary hypertension patient, the doctors must have misdiagnosed me, because I’m the only one in my family that has this. So, this resulted to me skipping on my medications and that eventually leads me to being in and out of the hospital 2 to 3 times in one year.
What is Pulmonary Hypertension you ask? well, the formal definition of “Pulmonary Hypertension (PH) is a condition of increased blood pressure within the arteries of the lungs. Symptoms include shortness of breath, syncope, tiredness, chest pain, swelling of the legs, and a fast heartbeat. The condition may make it difficult to exercise.” – wikipedia
My personal definition of PH is being TIRED all the time and not really having a reason as to why I am constantly feeling that way. I was formally diagnosed as Idiopathic Pulmonary Hypertension because I had no reason as to why the pressure in my lungs had increased. And in particular to my case, I also suffer from haemoptysis due to the rupture of the capillary in the lungs. Sounds terrifying doesn’t it?
Living with it definitely had its struggle. Even though I look like I am healthy as a horse, I find it difficult to fall asleep, difficult to wake up, difficult to move and practically difficult to lead a normal life. But, 4 years on, I had a new normal. I had learned that not being like everybody else does not mean that you are not normal. It just makes you, unique.
Now, I am feeling a bit better, because now I know how to handle my body. As PH patients also prone to heart failures, water retention in my body is considered to be a major contributing factor to fatigue. I now have to limit my consumption of water to 1 Litre per day. But, as I am also taking loop diuretics, I have to find the right balance between hydration and dehydration. That’s water, forget about coffee or tea, as they contain caffeine and that can make us PH patients palpitate and feeling more anxious.
PH patients could not exert ourselves because the pressure in the lungs, makes it hard for the heart to pump blood and circulate the oxygen our body needs to function. If I exert myself, you will find me turning pale and blue, and my heart beating like crazy in my chest. I need to constantly monitor my heart beat, to make sure that it is at a comfortable rate (80-90 beats per minute). If it goes any higher, I risk rising the pressure in the lungs that can encourage rupture or syncope (fainting). So, if you see me taking the elevator to just go up a floor, just be nice about it okay? haha
I have two wonderful doctors to help me monitor the progress of this disease and make sure that I am comfortable. As this disease have no cure, all they can do is to manage the symptoms until we go for heart & lung transplant. That, in it self is scary as hell and I find myself not even letting my thoughts go there. I adopt, let the future Ili deal with that. Still in Denial right? I know. But, in a way, it keeps me in a positive head space, instead of dwelling within the negative thoughts. I keep that idea, locked in a small box, tucked in the deep corners of my mind.
Also, I am lucky to say that I am still actively participating in life (working) with a lot of understanding from my bosses, instead of rotting my life away. Although sometime I do feel like I just want to lay in my bed all day everyday.
What I hope to achieve with the revealing of this part of myself, is that I’m hoping to be a source of comfort, or a person to turn to if anybody else is having a tough time with this disease. I never had mine. Even with the best support from family and friends a girl could ever ask for, I still felt completely alone. Nobody else in the immediate family is going through the same stuff I am.
So, if you are feeling tired all the time and you have no idea why, you have been having a feeling that you are about to pass out after doing heavy exercise, I strongly suggest that you go and get yourself checked out. It took me a while to go and get help because I’ve always been a ‘big’ girl and I thought that I was not being fit. And if you need to reach out, and share your story, I am here for you.
This disease taught me to be patient, and that I found a strength and courage that I never knew I had. Instead of focusing on the bad, I choose to focus on the good and it made me appreciate smaller things in life and that you don’t need everything to be happy.
Striving always to live my best life