Hello my lovelies,
Im back! I apologise for the long awaited blogpost but you’ll find out why I haven’t had a chance to upload throughout this post. I’ve got a few blogposts that are being written up but I feel this one needs to go up beforehand.
But firstly before I begin, I want to say a huge Happy New Year to each and everyone of you beautiful people reading this right now. I hope your year is filled with happiness, health, laughter and all good things because you all deserve the best! Make 2017 the best one yet as you never know what’s round the corner, live in the moment and make memories you can look back on in a few years time and laugh at. Don’t allow any negativity into your lives, positivity only!
well the beginning of 2017 has been filled with emotions for me, the sense of fear on people’s faces as they watch my body fall apart is heartbreaking and the fright of what to come will always be on the back of my mind.
On Tuesday morning I went to my GP due to my headaches worsening and new symptoms including heart palpitations and breathlessness had become more concerning. After talking through the problems she done my heart rate and I was rushed straight to my local A&E.
When I arrived at A&E, my heart was racing so fast and my breathing had become short, sharp and “panting” like, that I was made a priority straight away. I was rushed through to the A&E cubical right beside the nurses station so they could monitor me very closely. My heart rate was extremely high, my breathing was worsening, I was having sharp chest pains and my blood pressure was through the roof. I was attached to countless monitors and put on oxygen but everything continued to worsen. Bloods were taken as there was suspicions that I had a blood clot within my lung but after a X-ray and a CT with a dye, I was told there was no visible clots within my lungs which only meant one thing… my heart was struggling.
This continued for many hours before they admitted me into the “acute medical ward” were I was closely monitored by doctors and nurses. As soon as I arrived the consultant on the ward that night ordered for me to have an ECG’s which needed up being countless ECG’s as my heart rate was continuing upwards. Finally at about 10pm that evening we met with a consultant who ordered me to start a Beta Blockers straight away (to slow my heart rate down), one dose unfortunately didn’t work which meant I was given another two doses at 12am. By 2am they’d slowed my heart rate down, although it wasn’t enough for doctors to be happy.
By Wednesday morning my heart rate had began creeping back up again, although it was lower than what it was the previous day it was still running incredibly fast and my breathing was still a concern. We met with a new doctor that day who ordered more ECG’s to be done because the rhythm of my heart wasn’t matching the rhythm of my breathing and this was a worry to us all. After going through the symptoms I’d be suffering for days on end, she mentioned that she believes it could be a heart condition called PoTS which had been mentioned previously but never followed up. That’s when she contacted the cardiologist to hopefully meet with me the following day. The day dragged on and by the time I’d settled down for the night at around 12am, my nurse told my I was being moved wards. I had absolutely no idea were I was going and why i was moving but I was wheeled through the corridors. That’s when I noticed I was being rushed in to the “cardiac intensive care ward” so I could be monitored by specialised nurses and cardiologists. My heart rate had risen again and this time it was higher than it had ever been.
On Thursday I met with my new cardiologist consultant who is an amazing man. When assessing me and watching my machines beeping closely he told me my heart was “running a marathon” and that he’d never seen a girl my age, heart race so fast in all his years of being a cardiologist. He put me straight on to a dose of Beta Blockers, told me my heart has suffered some damage due to my heart beating so fast and that he also believed it was PoTS. He ordered a heart scan to be done to see if I had any clots in my arteries. The heart scan took around 30 minutes and I then went on to have more ECG’s throughout the day. Later on my heart rate was still far to high that’s when I was given two different Beta Blockers as my heart was resting at 150-155 (and it’s meant to be resting at 74 for someone like me) and every time I moved it would shoot up too nearly 200. Making me extremely breathless. I was told my breathing will get better as my heart rate decreases to a “happier level”. My blood sugars kept dropping making my extremely shaky, parts of my body were turning bright blue, my CO2 levels kept going high and my symptoms were worsening quickly. This continued throughout the night meaning my sleep was disturbed as you can imagine.
I was awoken at 5.50am Friday morning, by a nurse as my heart rate had shot up whilst I was asleep so yet again the doctors ordered a ECG to be done which ended up being like 6 ECG’s as they couldn’t get a proper rhythm due to it beating faster. This continued until my consultant saw me again and increased my dose of Beta Blockers to a very high dose which did thankfully bring it down to a better rate. We met with a surgeon who said my heart scan came back showing no clots but did tell me my body is producing to much adrenaline which isn’t helping my heart rate. After the surgeon coming he spoke with my consultant who then came to visit me later that afternoon. He properly diagnosed me with the deliberating and life-long heart condition called PoTS (Postural Tachycardia Syndrome) and Raynaud’s Syndrome (this affects the blood supply to certain parts of the body). He told me I’ll be on a very high dose of Beta Blockers for the rest of my life and I’ll continuously be in and out of hospital with my heart problem. I’ve got to monitor my heart all day everyday and if my heart rate rises above 125 then I need to be rushed back into hospital. He advised I stay in that night so they can continue to monitor my heart rate on the higher dose of Beta Blockers and hope it stays where it’s currently sitting.
Thankfully Saturday after talking with a doctor and getting my medications sorted I was discharged. I will have to have an ECG every 6 weeks and will meet with my cardiac consultant every 3 months unless I’m re-admitted back into hospital then we’ll see him then!
Due to the Beta Blockers bringing my heart rate down to a better rate, (it won’t ever be “perfect” or “normal” and will always be high but they are feeling “okay” with the rate it’s at now) my breathlessness has gotten better. But so much has changed in the last week for me that it just proves you honestly don’t know what’s round the corner. I can no longer talk without getting breathless, I can’t laugh properly, I’m no allowed to “bum shuffle” (the way I get around at home), I’ll have times when I faint and black out, get dizzy, always suffer palpitations, get chest pain, my sugar levels will drop dramatically, I’ve got to rest most of the time and so much more. I’m knackered, weak, incredibly drained and getting to grips with what problems I have now will take some time.
I can’t thank you all enough for your never ending messages, support and love throughout a very frightening time for us, I appreciate you all more then you’ll ever know and I’m so grateful to have you. This last week has really shown me who really cares about me and who doesn’t. The ICU team of nurses, junior doctors and consultants are absolutely amazing and I couldn’t ever praise them enough for the work they’ve continued to do for me. I hated the thought of going into adults but I actually prefer adults to children’s, they made me feel so comfortable and relaxed which I thank them for.
I really hope this helped you get to know what’s happened this week for me, I’m now to rest for as long as possible and keep monitoring myself.
2017 you may have tried to knock me down but believe me, I’m making you a good one despite the problems.
Sending you all tons of love as always,
Your positivity never ceases to amaze me. A beautiful girl inside and out. You are awesome and inspiring. Onwards and upwards and whatever life throws at you your strength will get you through xxxxx
thank you so much Cindy, it means more to me then I’ll ever be able to explain! Hope your as well as can be, sending tons of love & hugs hugs to you xxxxxx
Bless you! Praying for you! You are one amazing human being.
Thank you so much lovely, I really appreciate it. Tons of love xxx