PHighter Friday: ​​Starése

#MiraclesHappen

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 www.goingwithgrace.co.za

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.

Love,

Starése

Cross Over Post: "I Want Kids, But My Progressive, Fatal Disease Means I Can Never Get Pregnant"

The website xojane asked me to do a re-write of an article that I previously wrote here (previous article can be found here 'Why I Shouldn't Get Pregnant.') xojane posts a lot of real stories from other young women facing a variety of different issues. Some are fairly light hearted, others are more serious. If you haven't been there before, check out their website. I have even found a few other articles by other young women with Pulmonary Hypertension.

If you are interested in reading the re-write of the article I wrote for xojane please follow the link: http://www.xojane.com/healthy/pulmonary-hypertension-kids

I would like to add that xojane changed my title to be a real bummer. They also took the liberty of adding some pretty lame tags to my entry like 'death.'

Here is a preview of the article:

"December 21, 2013 is the day that forever changed the course of my life.On this day, I was told that I had Pulmonary Hypertension. I had never heard of this disease before, and chances are you haven’t heard of it either because it is fairly rare.

The news I received was bad, very bad. In addition to being rare, PH is also progressive, incurable and fatal. The doctor came into the room and announced that I have 5, maybe 10, years to live. I was only 25.

I looked out the window of the doctor’s office and saw many of my plans for the future floating away. I was immediately advised against pregnancy because of the high mortality rate associated with it for women with PH. I hadn’t even had time to process all my other losses.

In simple medical terms, Pulmonary Hypertension is considered a contraindication to pregnancy. Pregnancy for women with PH increases the risk of death for both the mother and child."

Please read the rest here

Why I Shouldn't Get Pregnant

Women with Pulmonary Hypertension are advised against pregnancy because of the associated risks. It is difficult to articulate the loss one feels over something they never had. I never had a child (nor did I lose one,) but losing the ability to get pregnant is painful in a way where you grieve and mourn. Although no one has physically died, it feels as if a death has happened. Suddenly the dreams of painting with my son or daughter, opening gifts on Christmas morning and reading them a story before bed (like my parents had done for me,) are all gone. Throughout this experience my friends and family have assured me that although I am sick, I am still the same person. The truth is, you cannot go through something like this and stay the same person. It changes you.

Being a product of Generation Y I have witnessed the birth and growth of social media. I have witnessed an age with over sharing- yet there is still a stigma around sharing anything unpleasant like loss. I touched briefly in my last personal post 'Isolated and Weird' on how I haven't been ready to meet any of my friends and families babies yet. Other young women with PH reached out to me to say they knew how I felt, and thanked me for sharing something that they could relate to. I saw other people share my post with their friends and family to help explain what they have gone through. This has inspired me to write more personal posts, and to share in greater detail my experience. Personal posts are something I avoided and only did on occasion because I didn't think it was something that other people wanted to read. So thank you for everyone who took the time to give me such kind feedback, and who shared my story that is not only mine, but ours.

In simple medical terms, Pulmonary Hypertension is considered a contradiction to pregnancy. Pregnancy for women with PH increases the risk of death for both the mother and child. Almost every organ is affected by pregnancy. The most notable change is the increase in blood volume within the cardiovascular system, which is something that could be potentially fatal for someone with Pulmonary Hypertension. Another issue is that many PH medications cause terrible birth defects- so if a woman with PH were to risk it and try to carry their own child, they may have discontinue some of their medications which are required to help slow down the progression of the disease.

Not being able to get pregnant because of a disease is weird and complex. It is frustrating because many of us with PH are fertile. This means if I were to get pregnant, it would not be a happy miracle (like most circumstances where someone cannot get pregnant due to fertility issues.) It could turn into a life or death situation. As a feminist, I also realize how heavily society places being a mother on women. Part of me fears that I will never be a good enough partner because I cannot provide a biological family, along with all the other worries associated with PH.

At age 25 I was advised that I had PH, and that pregnancy would carry a 30-56% fatality rate for someone like me. It was a few days before Christmas. I had also just found out that I had Stage 3-4 Pulmonary Hypertension and that I had maybe 5-10 years to live (maybe I will talk more about my diagnosis in the future.) At this point I was given too many losses all at once. While I knew that I wanted children, I also knew that I could not deal with that emotional blow at that time. My main priority had to be getting better, so I tried my best to focus my attention on that. I stored the emotional loss somewhere buried in my mind to deal with once I was better equipped to do so.

Several months had passed after diagnosis. The first winter after diagnosis felt long and the days melted together. When the snow had melted I was sent to see a gynecologist at the recommendation of my specialist. It seemed like every doctor was worried about me getting pregnant- as if I get pregnant as easily as one catches a cold. At this point I was so sick I was using motorized scooters in the mall, relied on the help of my mother to change out of my sweat pants into my pajamas, and I couldn't shower. Getting pregnant was just about as likely as me passing grade 10 math. (Spoiler alert- I didn't pass grade 10 math. Thanks a lot Mr. Young.)  I called the gyno office in advance to warn them that it was simply too soon to talk about my situation. However, I believed that I was showing signs of a hormone problem and would like to discuss that with then. I was told that this was fine, and went for my appointment.

I went to the appointment with my father. The building did not have any accessible parking, so we had to park half a block away from the building. It was at this point that I knew the appointment was not going to go as planned. The office was painted in soft colours- colours that had faded over time in the dated office. To the right was a Fischer-Price child sized plastic house covered in sticky finger prints. Behind the activity center was a collage of all the babies delivered by the doctor's from the office I was in. The collage expanded across the wall, engulfing the entire office. I watched pregnant women come in and out of the office. I realized that this was an office most women went to for something happy and joyous. It was not set up or designed for someone in my position. Instead it was a painful reminder of all the things I cannot have. I slumped into a chair trying to hold back tears. I grabbed a pamphlet to distract myself. The pamphlet was about saving the stem cells from umbilical cords to help with various diseases like Cancer. At this point I couldn't hold back my tears. I couldn't have a baby, or stem cell therapy (which I feel could possibly help some forms of PH- but what do I know? I only went to school for Fine Arts.)

Eventually I was called back to see a nurse for preliminary testing before I saw the doctor. The nurse asked how I was dealing with my diagnosis. That was a question I had been asked a lot in the months prior. It was  a question I wished people didn't ask because there was no good way to answer. It turned out the doctor I was supposed to see had a brain aneurysm and was off to recover. In her place was a doctor not much older than myself. My previous phone call advising that it was too soon to discuss my current situation was out the window. She showed me different diagrams and pamphlets to ensure pregnancy never happened. I broke down and really started crying. I was ugly crying. She handed me a box of tissues and called me 'sweetie.' It was the first time it felt like a doctor a could slightly understand what I was going through. Nearly every woman could imagine what it would be like to find out they could not get pregnant.

However, she still had a job to do. Her top recommendation was an IUD that Erin Brockovich has launched a campaign against. I turned down all methods that contained hormones. I didn't feel comfortable taking any more medication, especially something that contained hormones. I asked about having tubal ligation done, but she recommended that I stay awake for the surgery because anesthesia is usually avoided for people with PH. I left doctor's office that day without anything but a bigger emotional wound. Again, I told myself to focus on getting better and worry about this later. I had to prioritize my loses and gain back whatever pieces I could.

Now 27, I imagined myself married working towards having children in the next year or two. In reality, I live at home with my parents (if I call them my roommates, it doesn't sound as bad, right?) left my job, and alternate between sweat pants (aka day-time pajamas) and actual pajamas to sleep in. My years at university did not prepare me for this, but nothing really could have.

Since diagnosis I have heard conflicting information on whether I (and other women with PH) could safely get pregnant or not. I asked one doctor if I could take a certain medication, he said no because it causes infertility. Did you take that all in? What he said was both cruel and ironic. I asked him why he would even try to use that as a reason for me to not take the medication. His answer was that it is possible that women with PH could get pregnant in the future. I was furious. When I went to not one, but two consultations about tubal ligation (which is permanent) I was never talked out of the procedure. I called in sick to work that day.

I realize that getting pregnant isn't the only way to have children. There is adoption and surrogacy. I am totally okay with adoption. In fact, I have always wanted to adopt and worked with adoptive kids at a child care centre that I worked at. As someone who is still fairly newly diagnosed I still have a lot of fears and concerns about having children. It pains me to think I would not get to be the mother I want to be, or that I may not get to be here for all of the milestones. I wouldn't want anyone to resent me if I could not be the mother I dream of, or couldn't be there to see their first day of school or their wedding. Thinking about it now puts a pit in my stomach. For me, the greatest loss isn't that I can't have biological children. The greatest loss is that I feel like I can't or shouldn't have a family. As if I can't invest in my future. Maybe these (reasonable) fears are something that will fade overtime, but for now I feel like there is still a lot of uncertainty surrounding my health and future.

This post isn't to say that if you have Pulmonary Hypertension that you cannot have a family. There have been several women who have posted their stories on this blog who have adopted and they have wonderful families. I have also spoken to a few ladies with PH who have gotten pregnant and have given birth after diagnosis. There are more and more successful stories for women with PH who have given birth. (The Beth Israel hospital has been in the news a lot lately for this very reason.) I just felt it was important to share my voice and experience about this difficult topic because it is fairly taboo to talk about this publicly.

PHighter Friday: Karen

My journey with IPAH started nearly 27 years ago. I was about 4 months pregnant and went to the doctors as I was feeling breathless. This was my third baby. I never had breathlessness with my other two pregnancies.

I was given two inhalers for asthma.I started taking them regularly. I was then at Antenatal Clinic, and the lady I was seeing there told me that I was very breathless. I said "yes, I have asthma." She asked me when was I told that I had asthma. I said about three weeks ago..she asked if I would mind going for an ecg. At this time I was also going through a messy divorce, and my husband at the time had the girls. I was living with a new partner. I had the ecg and went home.

I shortly recieved a phone call telling me to pack a bag and get straight to hospital. I went to the hospital so scared out of my mind. I was then seen by a doctor who said he thought that I had blood clots on the lungs, but would test me in the morning. I was admitted for two weeks to get stabilized. The following morning I was seen by two doctors and had lung function tests. I couldn't have X ray due to being pregnant. They had a meeting and then came to see me in the afternoon. They suspected blood clots on the lungs and told me to consider a termination. I couldn't go through with that because I had lost a baby at 6 months prior between my two girls. I went ahead with the pregnancy. I had to give my self three injections of Heperin daily. The baby was born with no complications.

This is me and my husband , daughter Sarah is the middle daughter her hubby and my grandsons.

It was not until two days after that the vicar came in to read me the last rites. My blood pressure had plummeted through the floor. I was on constant oxygen and bed rest. Some how I must of had someone looking over me because I made it. Once my little baby was three months old I went to a chest hospital in London, England. I had numerous tests and was told that I had PH. I was put on Warfarin, Propafenone, and Nicardipine. No real PH drugs were available at the time. I was seen by this hospital every three months. During this time with PH I had many bad days, and with a new baby and two daughters it was very hard work. I had alot of support from my friends and family, which is good if you have PH. I got very depressed and shut my self away for three months of not going out etc. One day I got up and said to my self "Come on Karen, get out of this rut" and to this day I havent looked back, now only forward.

I was sent to Hammersmith hospital 14 years ago and that was the best thing ever. I was admitted for a week for full lots of tests and met some wonderful people. All the doctors and nurses in the Hammersmith PH team are fantastic. With the right medications like Bosentan, Sildenafil, Digoxin, and 8 liters of oxygen over night I have been good . I have recently been put on Macitentan and its brilliant so far. I had previously suffered with severe SVT's which is where I was taken to the local A&E and given Adenisone to stop them. Once the drug never worked and I had to have a cardio version. At hammersmith they sorted this problem out with having a heart ablation twice.

This is my daughter Leanne of 26 years old. 

My daughter is nearly 27 and a beautiful young lady I must say.I have two grandsons who keep me going, and a wonderful husband who gives me such a lot of support and does a lot for me. I had a nasty partner before him.


I am quoted at being class 3 IPAH. I was told 20 years ago that I had 5 years left to live. No one can tell you how long you got to live. I have learnt that having IPAH you have to pace your self in life. This may make people laugh but at times I get very scared, especially at night time. I think my heart is not going. So I sit up and get my stethescope out and listen to my heart. My husband asks me "what you doing?" I say I am making sure my heart is going lol. I know its mad, but I like to hear it. I also check my oxygen sats too. You have to remain positive and be strong during your PH journey.