Don't ever be made to feel stupid

After my appointment 4 weeks ago and starting the ivabradine I went back to see if there was any improvement and sitting in the waiting room, you just know it isn't ok you know that your blood pressure and racing heart is never normal, you don't even know what normal felt like was it ever normal ? 

When you have a condition for so long you just know your own body and when people ask 'but how do you know', you just do my blood pressure has never been normal for as long as I can remember or my heart It would be lovely to go one day and it all to fine. Taking my pulse and blood pressure my GP was shocked after I described my symptoms of my heart jumping from being to fast to, too slow in the space of a few hours and as I was describing it she said she could notice it doing at and kept on cheeking it in disbelief, my blood pressure high except sitting there I didn't even feel bad I felt fine, its like you must just get used to being sick all the time. For once I felt like a GP was taking me seriously something I have never felt, she told me when she exercises her heart rate reaches mine except she knows it will go back and its horrible so she can't image how I feel each day living with this known it wont go away and she told me to go to the hospital when I did feel bad with it, when I said to her but 'Why you just feel stupid' her words will be something I will know always remember '' people like you make me angry Danielle' she was saying the amount of drunks and druggies who go to hospital and people like me need help to feel better and its all because they don't understand so never be made to feel stupid. My next appointment for cardiology is April and even though its only like 6 weeks away she is going to try and get my appointment moved forward as she isn't happy or thinks its fair for me to wait that long, hearing again its not dangerous maybe if I was older it would be but being young your heart can cope makes you feel that little bit better.

I don't no what my next appointment holds and sometimes its the fear of not know which is the hardest thing to deal with. I spent my weekend at a hen party and enjoyed quite a few glasses of prossecco and letting off all the steam with a few work friends. 

Of course I cant forget to mention my beautiful baby boy who's now 13 weeks on Wednesday he's just amazing and keeps me going through all the bad health .. I finally have something who depends on me so much and that's my reason for fighting each day to get better he's my soul reason for getting up each morning, no matter how bad I do feel I can't just lie down to it all now.

                              My beautiful baby boy Kian Patrick James the picture on the left is him leaving hospital only a day old and 12 weeks on the right there's proof that sick mummy's can have healthy baby's Kian stopped growing because of my health problems but looking at this picture shows how much he's grown... my world my life my reason for not giving up.

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My baby boy at 10 weeks old

To my little Monster Kian

Your now nearly a quarter of a year old, your one of the happiest babies I know constantly smiling and laughing at anything and everything, you love to smile at your reflection in the mirror. I put you down in your big cot with the mobile and you loved it, the rabbits spin and play music you get so excited watching it your legs start to kick you wave your hands about and your eyes follow it you start smiling and screeching at it you always get so excited.

You also have a thing for your hands dad laughs because I call you a little magician but you also clasp them together and play with them and they also always end up in the mouth your necks getting stronger and are managing to hold it up. You keep giving me a fright every morning I wake up as you some how always manage to kick all the way to the top of your little carry cot and pull your shawl over your face and just laugh and smile when I try to pull it down and tuck it in. Your such an amazing sleeper going down between half 9 -10 and sleeping right through to half 6 -7.

When I took you for your jags the other week you screamed I think you were the loudest in the doctors but when I sat feeding you in the waiting room you started smiling and laughing at the other babies. Your slowly starting to grow out of your newborn clothes and making your way into 3 month outfits you were 9lb 3oz at 7 weeks old  I can't believe how quickly you are growing up we are starting a  baby massage class next week and I think am way more excited than you are, but you hate when I take your clothes off and your lips shiver so I am unsure if you will like it.

Love Mummy xxxxxx

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Sadness fills my heart

Going for my growth scan yesterday the look on the sonographer's  face, when you know something is wrong but hearing it, its like hearing it for the first time the sadness filled my heart that our little miracle baby hasn't grown how doctors would hope.

Baby Urquhart is only weighing about 6 pound and on the graph doctors have drew up he/she should have grown so much more in the 4 weeks.

I always knew because of my blood pressure and heart problems and the medication this was always a risk, but after each appointment hearing how well our baby was doing I thought we would never be faced with this, sitting in the waiting room seeing mums come in with babies, more sadness filled me thinking back to anything I could of done different, maybe I should of listened to doctors more, or maybe I should of tried to live without tablets or just maybe if my heart could of been fixed this wouldn't have happened in the first place.

But instead of feeling angry and upset been put on the monitor and  hearing our little baby's heart beating away I remembered how blessed I was to make it this far and be giving this little miracle after everything. Seeing the doctor it was decided because of  this been a new thing with the baby and the growth having stopped they want me to go for one last check on Wednesday and getting induced for a second time on Friday, and basically no matter what happens this time I will be leaving with a baby.

This time my feelings are different about the induction, last time feeling nervous and excited, this time I have set myself up for it not working again and thinking the worst so anything that's gained is a bonus, the midwife keeps telling me it wouldn't be the end of the world if it fails and I need a c-section but known how hard it will be with my heart to recover scares me not to mention needing all the energy in the world to look after a newborn, but known I am getting closer to meeting our baby no matter what it takes even having bad days with tachycardia to hold this amazing thing I have watched grow despite everything and finally be a mummy, and of course having Dougie by my side makes it so much easier, he is my rock through all the bad times.

During the scan our little baby was seen sticking its tongue in and out and doesn't seem to have a care in the world, who knows what life holds for our baby, I know the most important lesson I will teach baby Urquhart is to live each day like its your last, live life the the full and dream as if you will live forever.


Baby Urquharts graph has started to tail off                      

38 baby Bump (boy or girl )

 My husband,bestfriend, my world, my complete rock <3

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failed Induction, self discharge... Will you listen yet ??

After my last post I was booked in to be induced at 37 weeks which was Monday, Me and Dougie got up in the morning and were both feeling excited that we were going to hospital to have our baby, but that didn't happen. Arriving at the hospital my blood pressure was checked and the same thing again of it been high so there was a delay before doctors could start me off as I was giving a thing called a pessary which is inserted to release hormones to help ripen the cervix which may stimulate contractions and doctors were worried if I became sore my blood pressure would get worse. After a long 6 hours I finally got the hormone but 24 hours later I was only 1cm dilated, So the next step I was giving Gel to help soften and dilate my cervix every 6 hours.. but after a long 72 hours still there was no change, as well as giving the gel the doctor carried out a sweep in the hope this would bring on labour but still nothing happened. On Thursday night I had been giving all the medication and gel I was aloud so doctors decided to let me home for a rest, they were going to try and break my waters but because my cervix was classed as unfavourable the doctor warned I was at a very high risk of that failing and needing forceps or a caesarean section, so decided against this, me and Dougie left the hospital finally glad to be getting home after a long 4 stressful days but disappointed we were leaving without our baby. The induction process was horrible and spent most of the days in tears as hearing over and over again that there was still no change and everyone else coming and going round to labour ward was soul destroying that my body was failing the induction. I always knew this could happen as doctors had told me the risks with only being 37 weeks but I think I had lied to myself and never faced up to this happening, but part of me felt angry that I didn't want to be induced in the first place and it was all because of doctors not understanding my condition and just panicking at my blood pressure.

If things couldn't get any worse they did returning the next again day to have my blood pressure checked which yet again was high .... which is my normal and over and over again trying to explain myself and how this is normal for me and trying to explain about my heart the doctor finally decided they were happy to leave me a week to see how things go and if things did get worse they would look at a second induction, but giving a date to return on Sunday just filled me more with anger as the same story of a rest turns into returning every 24 hours.

I am physically and mentally exhausted, I am spending most days in tears as I feel no one is listening and over and over again I hear doctors say I don't understand how serious this blood pressure is for me or the baby, when its my normal and know my own body the doctor I had seen the week before had tried to increase my beta blockers but agreeing with her I never did and the doctors I have seen since I have told them my reasons why I haven't increased them as its far to much and this then causes me to become unwell with low blood pressure.

Returning on the Sunday just made things even worse as its the weekend the day assessment clinic is closed so I had to attend the triage unit which is used for emergency's already I felt like a time waster as I amt an emergency and had only been checked 24 hours ago I  felt there was no need to be checked again but turning up in the morning my appointment turned into 4 hour one ... and resulted in me signing a self discharge sheet as the same story again of my bloods been fine, baby been fine but my blood pressure been high ... like it always is I finally lost the will to live and signed myself out ... tiered frustrated and feeling let down.

From the start I have done everything doctors have said is for the best ... and instead I just feel majorly let down a failed induction which should never have happened in the first place, begging them to talk to my cardiologist to maybe help them understand just seems to go unnoticed, breaking down to Dougie and spending the last few days in tears I have lost all faith and trust and the hope of them listening to me the only thing keeping me going is known I will hopefully get to meet our little baby soon and all this sadness and frustration will all be a distant memory. My so called rest ... is to return tomorrow for another growth scan despite the baby been a good size, and then more checks on Tuesday to be left alone and recover from the tieredness and let my heart rest and then I would feel so much better... just doesn't happen for the main reason they don't understand the condition !!!!

   Dear Doctors 

         have you read the spoon theory ?????

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Depression

waking up to the shocking news this morning that Robin Williams has taken his own life is a shock.
It Just goes to show you that you really have no idea of the demons people hide behind closed doors,
We all grow up to the films of Mrs Doubtfire, Aladdin  and Hook to name a few so how come a famous actor can end up feeling so alone that the only way out is to take his own life ?. depression seems to be hidden alot in this society and something people don't seek help or talk about when it effects so many people.
I myself can be bad for this I act like everything is fine, I smile I laugh and joke with friends but being on my own I start to get teary its like a switch goes off and sometimes I feel sad about my health when I say I am struggling  I remember that I said it the time before and even the time before that maybe even last week or just last month I feel there's constantly something new or something I have already experienced, I used to use the phase one day at a time but now I look at it as a few hours at a time and that helps, am sure we all have teary sad days but its important to know when your just feeling a little low or when you should seek help.

I am lucky I have Dougie who lifts my mood when I am feeling down and things are getting to me but others are not so lucky so its important to speak to someone about the way your feeling or phone the Samaritans. also always remember you never know when one kind word you say or the smile you give someone will be saving another life, your every encounter has some kind of impact on another's life and also always treat others how you yourself like to be treated you never now what others are going through, the battles they face or what hides behind there smile.

Love and hugs



                           

Stay Strong

Hey Everyone !

I have now reached 23 weeks 3 days ! with a few more weeks  left in the second trimester baby Urquhart had his/her heart scan last week  and we received the good news that the heart looks healthy and even checked the rhythm of babys heart which looks normal and the heart is beating at 151bpm we still didn't find out the babys sex as we both want the lovely surprise on the day they are born .. I think a girl .. dad keeps saying a boy so the guessing game continues, sadly for us on this day my husband received a phone call to say his granddad had become unwell and doctors didn't think he had long left, and on the 23rd of July he sadly passed away a day after his 87th birthday. Its the first time since been diagnosed I have had  proper hurt and sadness and its the first time in awhile I have felt really unwell with my problems, even lying down with my heart I felt like it was double beating/ missing beats.. and the struggle of keeping it together for my husband and his family was difficult.
This Friday I also have the hospital to get a 24 hour ecg tape done again but this time a 12 lead one .. I was supposed to get it a few weeks ago but after traveling the long bus journey in the heat I got there to be told a patient hadn't handed it back so ended up with the 3 lead ... only to receive a phone call on Tuesday to say I have to come back for the 12 lead one, heres hoping tomorrow they have the 12 lead one and it wont be a waste of a journey, also my next scan is booked in 5 weeks time as my recent appointment with obstetrics went well but we have been told that taking beta blockers and being  pregnant can prevent the baby from growing properly so we have a few growth scans booked were we will hopefully see our little miracle grow nicely.

 Here is my picture of me baring my bump for the British heart foundation since I was a winner .. with a heart monitor no better way to raise awareness !

my baby bump at 22 weeks 4 days

 Baby Urquhart at 22 weeks 2 days looking healthy <3

 Sadly Doug's granddad passed away <3

'Beacon of hope for the little girl that doesnt have any.'

 I decided to do this blog to raise awareness and help others but also to be honest about my personal struggles with heart rhythm problems and  how I have struggled with anxiety due to this condition, and how even going out alone became a task for me as the constant fear of fainting and been alone when it happened became a huge problem I even suffered a few panic attacks just going to my front door because the fear of fainting outside made me feel so frightened. Anxiety issues which is something I am coping so much better with now I know others aren't always open about it, life can be difficult but fighting through the pain is worth it its better to feel emotions than to have felt none and I found by allowing myself to feel the one thing I had been pushing away and speaking about it and being vulnerable made me accept the way I was feeling and became the path to beating the anxiety I felt because of my heart problems , also I surrounded myself with positive people and stopped wasting time on people who didn't appreciate me or bother to understand the way I was feeling or what I was going through. Become your  own  best friend I have learnt to become my own best friend as  I spent so many nights crying being sad and feeling let down that the cardiologists weren't able to fix my heart, but I learned that being my own best friend and comforting myself helped to overcome the sadness and anger I felt,  I also found to keep secrets can be so toxic ,keeping the way I was feeling just made me feel worse as I hid away from everyone and everything, which just led to me becoming more angry and isolated myself from the ones who love and care about me So if you feel this way share your secret it will make you feel so much better.

What makes life valuable is that it doesn't last forever, what makes it precious is that it ends, time is luck so don't waste it hiding away from your emotions or secrets make the days in your life count for something fight for what matters to you, share your story and you may help someone speak about their emotions, which for me helped me beat the way I was feeling.

I hope my blog can help,  teach and motivate someone else to find the courage and strength to do the same and never give up if your feeling/ going through hell keep going everyone is entitled to bad days. A secret shared is a secret halved.

Tilt table test !

So today was the day I dreaded the most the tilt table test and my fear was because of listening to others and there experience, and have to say it wasn't as bad as I had thought it would be. So I had to fast 2 hours before the test which normally doesn't bother me but been pregnant I find this difficult as I start to feel really sick if I don't eat little things every so often so even arriving at the hospital I felt sick to my stomach. So a blood pressure cuff was attached to my arm and ECG stickers and I had to lie flat on a bed and had straps over me to stop me from falling, the lights were turned off and I had to lie flat for what felt like hours but think it was only 10 minutes or so and the women took my blood pressure then the table was lifted up high and then tilted up so I was fully standing, but still attached to the table and left to stand for another 10 minutes... I didn't feel any symptoms, I actually feel worse with my heart when I am lying flat as I feel it race when I am resting..

Hope this is useful to others stay strong and be brave lots of love xxx

Next Ablation !

So on Wednesday the 22nd of January I went into hospital for my next ablation were it started with blood, an achievement in its self, because My veins are terrible after 2 nurses trying with no success I was then took round to the lab were the cardiologist tried to put a venflon  in my arm for sedation and medication which was unsuccessful and after a few attempts gave up, So had to stay awake while he started the procedure which was awful :( but luckily they gave me the medication through my groin once they had gained access. This procedure was more painful than the last one as they used bigger catheters and special computers and after 3 and a half hours I was told the procedure was unsuccessful  and was also diagnosed with the condition Inappropriate Sinus Tachycardia. I was discharged and giving new tablets called Ivabradine to control my heart rhythm.

My New Medication !

Recovering From this ablation was harder and found it difficult to come to terms with  been diagnosed with such a horrible condition. I spent the first few days crying and been upset but the support off my friends and family have been amazing and want to do everything possible to help others cope with this condition. I am on day 3 of these new tablets and things are going ok so far.

A Get well card off my special friends.

More Gifts from my friends :)

High 5 to my cat Tinkerbell the day after ablation , someone had the friday feeling:)