As in the past, I tend to use this blog as a ‘highllight reel’ instead of documenting my journey often, but I must admit though, even by my standards, this post is way over due! So since the last update I have managed to relocate to England with Greg and Micaela and we are now in the process of settling into our new country of residence. I needed oxygen on the flight from South Africa to Birmingham, and my very conspicuous mask certainly got me a few stares 🙂 The reason for the oxygen is because the pressurised aircraft cabin has around 20% less oxygen than what I am used to at sea level.
Just to recap – The Bosentan I started a few months ago has not had the desired effect, and for this reason my doctors are going ahead with an “aggressive” treatment. So, big news is that I will be starting IV therapy – TODAY! This is a major step since having a permanent line in my body that is attached to a machine I need to carry around everywhere will be a pretty big lifestyle change! The pump that administers the medication 24 hours a day weighs a few pounds and is about the size of a paperback book – just much heavier.
The last time I posted I mentioned that my mean arterial pulmonary pressures are around 120mmHg based on an estimate from an echocardiogram, but my recent right heart cath (which is a true accurate reading instead of an estimate) was 56mmHG which is obviously drastically lower which I was happy to hear. The normal range as mentioned before is between 8-20mmHG, so even though 56 is “better” than 120, it is still extremely high and doesn’t change the reality that my heart is not coping at these levels.
Post-Right Heart Cath Selfie!
I will try my best to do frequent updates over the coming days and weeks as my body has to go through quite a challenging adjustment process. I had a PICC line inserted in my arm this morning and now I am literally just waiting to get started on Veletri. If anyone wants to understand this type of drug, check out this link for some medical info What is Veletri and how does it work?
So here’s the latest news regarding my pressures – things have certainly gotten a teeny tiny bit out of control – my mean pulmonary arterial pressures are sitting at 120mmHG – eeeeeek! (the normal range is usually between 8-20 mmHG) Bosentas is unfortunately not doing the job and neither is the Revatio or Amlodipine which means we have made some major decisions recently – United Kingdom here we come…again! Unfortunately I don’t have other options in South Africa except a lung transplant which is an absolute last resort with unpredictable outcomes.
And here dear friends is the amazing truth that I am currently experiencing in this rather serious situation – Isaiah 26:3 “You will keep in perfect peace those whose minds are steadfast, because they trust in you.” Greg and I have peace that surpasses our own understanding (Phillipians 4:7) because we serve an almighty and loving God who is by no means surprised by yesterday’s visit to the cardiologist. I am so grateful for the hope we have in Him because without it I just might be a complete wreck.
Our aim is to leave late December or early January, depending on a few admin details and flights, and then I will hopefully be admitted to Papworth hospital in Cambridgeshire soon after. The UK offers waaaaay more treatments than South Africa has and it is an enormous blessing to be able to go back on ancestral visas.
Thank you to everyone for the love, support and prayers. The next few months are going to be a bit of a rollercoaster ride, but we know God’s grace will be sufficient for us. Will keep you all posted!
Hello everyone! Just a quick update to let you know that I have started on Bosentas (The generic of Bosentan) and so far I am not experiencing any obvious side effects. It’s only been a week but whenever I put a new drug in my system there is always a nervousness about side effects – I don’t read package inserts unless I start to feel something out of the ordinary and only then do I go see if it matches the side effect profile otherwise my mind plays tricks on me and I start imagining all sorts of weird sensations. lol.
I hope that my pressures will drop below 40 mmHG on the new meds which will allow me to go visit family in Johannesburg at high altitude. My current pressures are sitting between 60-70, so I’m praying my socks off for a significant drop. I will go to my cardiologist in about a month’s time to see if I am responding to Bosentas. For the most part I am coping very well will daily activities and rasing a 1-year old, but there are times where I can feel the breathlessness setting in and that forces me to slow down a bit. It has been a good reminder to always remain grateful for the things that others take for granted – like taking a brisk walk around the shopping mall or picking up after Micaela. I used to do these things without thinking about them and pray that one day soon I won’t have to catch my breath while playing with my daughter. There are many many PH PHighters who are way more limited in their daily activities so I am very grateful for the many things I can do pretty effortlessly.
Last week my story was featured on the PHight or Flight Project’s weekly segment called PHighter Friday. You can read the post I wrote here! I am so humbled by the response I received and the many people who got in touch to send some love and support my way. Thank you all!
I’m also so happy to have made new connections in the PH community. For a very long time I refrained from joining PH groups or connecting with others because of how much negative stuff there is published online. As I have mentioned before – Google is not your friend when you are navigating the uncertain terrain post-diagnosis.
I try to fill my mind with positive things and I found that the internet was a depressing place overall, but it doesn’t have to be. I am so inspired by the many-hope-filled amazing people that I have come across in the last few days! I also realise that I have a responsibility to share my experiences with others and in doing so I am finding new purpose along the way.
On the 12th of August 2015 we welcomed our miracle baby girl, Micaela Grace into the world – what a journey it has been! Thank you Lord for the privilege of being her parents after so many doctors said we should not venture down the pregnancy road because of my Pulmonary Hypertension.
She is a daily reminder that God is bigger than the impossibilities we face! And we continue to trust Him for more miracles to come 🙂
Hi All! Just an update after going to the cardiologist recently. My pressures are currently sitting at around 65mmHg which is up from my previous visit, but my heart is coping well. I am still waiting for new medication that we have applied for nearly 4 months ago – there’s some major red tape to import medication not registered in South Africa, but God-willing we will get there soon.
After experiencing such wonderful improvements in my body since starting on glyconutrients and whole-food supplements I was expecting a drop in my pressures, but the reality is that it is still early days in the land of complementary medicine. I recently read a fascinating book by Dr Steve Nugent called “The Missing Nutrients” where he goes on to explain how glyconutrients behave in the body and points out that different cells regenerate at vastly different rates. The cells that are major culprits in Pulmonary Hypertension for example (endothelial cells) can take many months, up to years to renew which means that glyconutrients need to be a part of my everyday life, and in high enough quantities, to start the healing process when the time comes. I am still so excited about the wonderful nutrients I am putting in my body daily, because I can see the difference in so many obvious ways. I no longer suffer from debilitating chronic fatigue, my eczema is gone and I am almost entirely pain-free after two years of chronic sciatica – this stuff works!
Even if glyconutrients don’t cause a complete turnaround in my Pulmonary Hypertension, at the very least it will minimise side-effects from chronic medication, assist the drugs to perform better in my body, and support my overall health. This in itself is good enough to make these supplements a lifelong health partner.
For anyone reading this who is battling with a major health challenge or knows someone who is – please be encouraged that there is hope! Please mail me at firstname.lastname@example.org if you want to know more or would like to hear more testimonies of people who have had lifechanging results – I have over 150 amazing personal stories on file that I will gladly share with you!
There is hope! Please watch our video testimony here.
After four months on glyconutrients and some other health products, my health is better than it has ever been and I have seen incredible changes in my body. Soaring energy levels, 95% improvement of chronic pain from a pinched sciatic nerve, eczema has cleared up….and pretty soon I will have an update on my pulmonary pressures! WATCH THIS SPACE!
Since I can remember I have struggled with being tired. I used to think of myself as a “low energy person” who just needs more naps than the average person and preferably 10 solid hours of sleep every night. This was all long before my pulmonary hypertension diagnosis, but things definitely got a lot worse as my PH symptoms started showing up three years ago.
For many years now I have had an interest in nutrition, fitness and health, and really tried to make good food choices as far as possible. I strongly believe there are things we can do to greatly increase our energy levels and help our bodies cope with the onslaughts of our modern lifestyle. But what exactly? Everyone has an opinion and for every forum on the internet on the subject of wellness there are links to 10 different health gurus’ websites all claiming that if you follow their extreme detox program or buy their supplements you will be a new person. Sigh. It’s too overwhelming!
I have often ventured into health stores on a mission to find that one magic supplement that will give me the boost I need to overcome fatigue, but nothing seems to really work. Well, not for me anyway. So in a moment of desperation I prayed and asked God to show me what pieces are missing from my “health puzzle”. What does my body desperately need that I am not giving it? A few days later, through a sequence of events that are too coincidental to be coincidence, Greg and I got introduced to a range of nutritional products that have really been amazing. Ever heard of glyconutrients? I hadn’t, but man oh man…the results speak for themselves. I have so much energy! I have been on these supplements for two months now and in the past 3 weeks I have felt such a spike in my energy levels. In addition to glyconutrients I also take a food-based vitamin and mineral powder that I mix in with a smoothie every morning. All I can say is I feel better than ever and I think this might well be the answer to my prayers.
The glyconutrients greatly increases your body’s ability to heal itself by providing every cell in the body with the essential elements it needs to communicate properly. If your cell-to-cell communication is out of wack your immune system can’t perform its tasks optimally either. Here’s a video explaining it in more detail for those of you out there who are intrigued…
If you would like to start a glyconutrient program please leave your email address in the comment section and I will be in touch with more info. I truly believe that if I can have life-changing results so can you!
The average person’s pulmonary pressures are roughly around 15 mmHg…mine is currently sitting at 57, which, for lack of a better word is sucky news. But it could also be way worse so it’s somewhere in the middle I suppose. This means that since my last right heart catheter, and despite new medication, my pressures are continuing to rise.
In the last two years I have gone from very nearly dying and being told I would never have kids, to giving birth to the most perfect baby girl while remaining without any symptoms of the condition doctors claim has no cure. I am not writing this to shock anyone, but just to point to the power of the One who has made a way for me where doctors said there was none – thank you Lord! I know you’ve got this!
So once again, I stand in faith and hold on to the promises that contradict everything that modern medicine can tell us about pulmonary hypertension. Google says…”no cure”, “severe breathlessness”, “short life expectancy”, but God says “you cried out to me and I have healed you”, “a long life I will give to you and show you my salvation”, “do not fear”.
My next step is trying a different medication (Bosentan) and fighting with medical aid to cover the costs. This medication is not registered in South Africa so it is difficult to come by and even harder to afford, but if these meds are going to be part of God’s plan for me then He will open the doors.
In the meantime, my husband and I live one day at a time, while really trying (but sometimes failing) to embrace the many things to be grateful for. Not every moment is perfect in the sense that fear does creep in, but we are learning to keep our eyes on the victory and let God fight the battle.
…since my last post! #motherhoodishardwork
I’m sitting here trying to type an update that will do justice to the lifechanging event of bringing a child into this world and dedicating every waking moment after that to their every waking need and well…let’s just say….there’s no ways I can express it to you in one of my short and sweet usual posts. And to be honest, I’m actually more keen on a cup of tea and doing nothing while my daughter sleeps than thinking of sentence construction right now 🙂 Please forgive me for keeping it concise!
Right now, Micaela Grace is 5 months old and absolutely thriving! She is healthy and happy and I praise God daily for allowing me to be His mommy of choice for this little baba. I am in awe of her perfection and the enormous amount of love that I feel towards her. Motherhood is crazy awesome and pretty tough at the same time, but as the cliche goes….I wouldn’t exchange it for anything.
Healthwise I hit a bit of an emotional low when I heard that my pulmonary pressures were up at my 8 week checkup with my cardiologist. Since then I have been on additional meds which will surely cause those outside of the pulmonary hypertension circles to giggle – I’m on Revatio i.e. Viagra. Lol. Three times a day no less! This should in theory dilate my pulmonary arteries and lower my pressures, but I will only be able to get an update on it’s success in another 2 months. Praying it works so I can go visit family in Johannesburg which is currently not an option due to the high altitude mixed with my increased pressures.
I’ll cover the birth some other time, but let me just say it was pretty difficult. I had a c-section but was admitted early due to a suspected pulmonary embolism which meant a total of 12 days in hospital. But at the end of the day, I made it through pregnancy and birth with a medical history and prognosis that said I would most likely not be able to. So grateful!
And here she is folks…