Thursday, 18 August 2016

PHighter Friday: ​​Starése


Hello fellow PHighters! 
What an amazing privilege to share my story with you all today.
My name is Starése Coote and I am a 30 year old wife and mother, living in Somerset West, South Africa.

When I was diagnosed at the age of 27, my husband and I had only been married a year and were planning our futures without a care in the world. As you can well imagine, our rose-tinted honeymoon phase came to an abrupt halt with my diagnosis, but even though the last three years have brought many unforeseen challenges, it has definitely created an even stronger bond between us. I am so grateful for his unwavering love, support, sacrifice and strength.

My PH journey began like many others' with breathlessness that slowly increased over time and strange bouts of gasping for air even when doing mundane things like making the bed - clearly not normal, but when you consider yourself to be a healthy young adult with your whole life ahead of you, you don't pay too much attention to the initial symptoms.

At first I was misdiagnosed with exercise-induced asthma, but before I could even start the inhalers, my grandparents-in-law made an appointment with a Pulmonologist to get a second opinion. I am so grateful that they convinced me to go see a specialist because I was quite happy to just accept the asthma diagnosis and carry on. But thanks to their generous offer to pay for the appointment, I went and received a very different diagnos is: Primary Pulmonary Arterial Hypertension. As I am writing this I can still vividly remember how I felt when the doctor explained what that meant, leaving me in a pool of tears with a very devastating prognosis. Most of you reading this will know what it is like to be told you have a very short life expectancy and won't be able to have children etc etc, but I look back at the way I received my diagnosis and realize that the hopeless picture that was painted was not true at all! Three years on and I am living my life filled with abundant blessings - not least of which is my precious baby girl that I gave birth to a year ago! That's right - PH couldn't stop me from fulfilling my dream to have a baby!

At the time of my diagnosis my PH was very advanced and I had reached the dreaded syncope stage. I even lost consciousness once while lying in bed fluffing my pillow! That mini sit-up proved to be a bit too much for my struggling heart, so needless to say I was not in a good place.

We had to leave our hometown in Johannesburg because of the high altitude (Johannesburg is 1700m above sea level) and after a brief stint in the UK, we moved back to South Africa to our current home in Somerset West which is a beautiful coastal town in the Western Cape province.

While in the UK I started taking a very high dose of calcium channel blockers which proved to be just what my narrowing pulmonary arteries needed. My mean pulmonary pressures went from 62 to 27 in a matter of weeks - praise God! And just a quick note on the topic of faith - I seriously cannot imagine being on this journey without my belief in an Almighty God carrying me through the rocky terrain of this mysterious condition.

God has been so faithful along the way.

But let me get back to having a baby after being diagnosed with PH. I just want to say that I in no way advocate going against doctors' orders when dealing with an unpredictable disease and a decision of this magnitude, but this is my story of doing just that.

After my diagnosis, my desire to be a mom was crippling. I found myself deeply depressed and I hate to say this but I even felt a bit of resentment towards those around me having babies. It was a very dark time emotionally even though my body had physically made a remarkable recovery. I felt normal again and had no obvious trace of this disease ruling my life except for the medication I took each night. In a way it was harder to accept that I wasn't 'allowed' to have a baby because my body felt strong again. I honestly felt deep down that I can do this!

Initially my husband was not on board with the idea which is totally understandable - he had nearly lost me once and was not about to take any chances. If I'm honest, his resistance to the idea and my overwhelming belief that I would be fine put a lot of strain on our marriage, but after about 10 months of visits to my cardiologist that showed that my PH was stable and my heart back to normal, we finally and very prayerfully decided to fall pregnant.

Besides the usual pregnancy discomforts and 17 weeks of terrible morning (afternoon and evening) sickness, I had a very normal pregnancy. I was monitored very closely of course, but all the doctors were amazed how well my body coped!

I was admitted to hospital early because it was suspected that I might have developed a blood clot, but my time in hospital ended up being a really chilled experience of just relaxing before the birth.
It was decided that I would deliver at 37 weeks via c-section  which was scheduled for the 12th of August 2015. All I can say is that seeing our baby girl for the first time was one of the most exhilarating moments of our lives!

I went  straight into ICU for 24  which was just a precaution in case my heart struggled to get rid of excess fluid post delivery. Thankfully I cruised through ICU without any issues and was reunited with our perfect princess, Micaela Grace,  the very next day.

Micaela has just celebrated her first birthday and she is absolutely perfect! We are eternally grateful for the privilege of being her parents and for the miracle her life represents.

Over the past year my pressures have slowly increased again, so I will be going on new medication soon to bring it back down again, but I am trying not to fixate on the numbers. I have learned that the human body has an amazing ability to fight, adapt and recover. Don't lose hope even if you are physically in a bad place right now because things can turn around very quickly!

I love making connections, so don't hesitate to add me on Facebook or connect with me on my blog

I have loved sharing my story and if you have taken the time to read through it then I am truly humbled. Thank you!

Keep on PHighting brave ones!

A little bit of faith and hope can go a long way.




  1. You are very lucky. May God bless you n your princess.
    A year after our marriage, My wife was diagnosed when she was 23. Pregnancy was not allowed in our case too. But she insisted and was pregnent but looking at her medical condition the doctors didn't allow us to continue. We had to discontinue in the 11th week.

    1. Thank you for your comment khalidakj and I am so sorry to hear about your experience - that must've been devastating for you both. I hope that your and your wife's desire to become parents will be fulfilled one way or another and that your journey will be a blessing to others!

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  3. Thank You, for sharing your story, I really appreciated it. My story has nothing in common with your except diagnosed with PH. However I like hearing stories of hope it gives me hope as well as others read your story. I am new to all this blog stuff and Facebook but I still keep trying. I was a maintenance tech all of my life turning screwdrivers and wrenches, some times replacing computers, but never any good at using one. One day God changed all that, after starting each day running 100 miles an hour, I found myself sitting in a hospital bed for 24 hours a day for almost a month. Which got me to playing with a laptop, and into Facebook, and now following blogs.
    Congrats on your 1 year old, August is a good month to be born in. I am Gary Haskell on Facebook, I will try and connect you you on your blog.

    1. Hi Gary! Thanks for taking the time to read my story and I am so happy to hear that you felt encouraged by it! I can relate to being a very active person and then find yourself a few months later in hospital with a life changing diagnosis. Really quite something to wrap your head around initially! I would love to connect with you on Facebook, but see there are quite a few Gary Haskells :) My husband and I have a shared profile under Greg 'nStarese Coote if you want to look us up.