Excited children on Christmas eve

Well it's Christmas eve and today we have done a quick shop for cat litter. The shops were very busy so very busy. I don't know why as the shops are only closed one day, two if the shop staff are lucky.

Then some christmas film watching, home alone 2, and my children have been bouncing of the walls most of the day saying 'we're so excited'. This evening we went to the crib service at our church, my daughter was dressed as an angel with a tinsel halo and my son was a shepherd.

We walked to church and the service was lovely my daughter was a big part of the service but my son on the other hand only wanted to stay with me. After the service we walked home looking at all the houses that had christmas lights on them.

When we got back we had dinner and then settled down to watch The Snowman and The Snowdog. I loved it just as much as the children did and even had tears running down my face at points. It was a stunning short film a must get when it comes out on blu ray.

Then we got out the children's santa sacks for their pressies from father christmas to be put in. Then we got out the mince pie, sherry and the carrot for the raindeer. All put on a plate with some raindeer food that my daughter was given from her school.

So as I write this my husband is upstairs reading them bedtime stories which he has been doing for over an hour now!

Cats

We have two cats one called Jezebell, is White and Black, who is about 16 we have to guess as she is a rescue cat who we got in 2006. She has made such a diffrence to our lives. We were both working at the time that we got her and she would be a happy face there to great us when we got in. But I think it was more a case of 'aww your home now feed me'!

She has also been a good indicator to me collapsing or having a migraine. She would sit on me or next to me and would not leave me alone for about six hours or so before I would have a migraine or collapse. She has since stopped doing this once my pacemaker was implanted and I only get migraines once in a blue moon now. But she was never my cat, she was always my husbands cat. She likes him more than anyone else.

Our new addition is a little kitten called Baskerville, is Black but in sun light you can see spots and stripes, we do know how old he is as he was born at the rescue center that we got him from.

www.woodgreen.org.uk

He was born on the 22nd May 2012 so he is now almost 7 months old. I think he likes me the most as he is always sitting on me and trying to lick me and I can do almost anything to him. We got him the month before I went in for my pacemaker operation.

I think he would prefer to be an indoor cat as the outside world is very scarry in his eyes. He does this very funny backwards walk when the wind blows. But I do make him go out every day as long as it is not raining.

He acts like a baby, I can cradle him in my arms all the while he is purring his head off. My husband calls him my baby replacement! I think he could be right there! But he did name him, he was called Tumbles when we first had him.
My husband said that was an ok name for a kitten but not for a cat.
Baskerville was the name and on his collar he has a bone shaped name tag. We thought that was quite appt as he is named after 'The Hound of the Baskervilles' and we also live at number 221 so very Sherlock Holmes. My husband names the cats as he says to me 'you got to name the children so I get to name the cats'

Not sure what will happen next but there will always be a home for a rescue cat or kitten here.

Photo memory

My son at 4 days old. What a lovely memory.

Christmas play

On Tuesday we went to our daughter's first Christmas play. She was a snowflake.

It was a show of about 45mins and she sang all the songs and did all the actions. Now I think she has the performing bug, she has now turned our fireplace into her stage.
She had been recreating her play for us over and over since.

It was such a proud moment that there was a tear in my eye and my husband, the soppy thing, had tears running down his checks.

After the performance she went back to her class and we went to the local garden center and while walking around my husband said we should get her a little something for doing so well. In the end after much serching we went for a large snowflake christmas tree decoration and a small chocolate bear.

When we picked her up from school she got given her little present and the snowflake now has pride of place on our christmas tree. The chocolate bear lasted about 2 minutes.

Weather

I'm british so I think a blog about the weather is quite normal.

This week all we have had is rain and after a very very wet summer the water has no where to go!

My garden is waterloged but we are lucky that we live on higher ground. I feel for all the poor people that I have seen on the news, who have had their houses flooded.

I feel very lucky to live were I do but I just want this horried weather to stop. It is so gray out most of the time. We are getting up when it's dark and it is getting darker so early now. (I do know it's winter & this is normal for it to get dark early)

My poor cats want to go out but as soon as I open the door they look out and do a backwards walk away from the door.

With the weather the way it is I can't even let the children out in the garden. So the poor things are in their room making lots of mess which they don't tidy up after they have finished playing. So it's down to me or most of the time my husband to get them to help him tidy up before bedtime stories.

Even the children are asking when it is going to stop raining. They don't mind the rain as it makes nice puddles which are great for a game of 'splish slash splosh' which consits of jumping in puddles to see who makes the biggest slash.

Lets hope this wet spell does end soon.

Migraine from Hell

I have just had the migraine from hell.

It started on Friday and I took my migraine meds, Rizatriptan, and I thought it was gone by late evening.

On Saturday I had a slight headache but it was nothing much so didn't take any painkillers. On Sunday I still had the headache so took some painkillers in the morning and thought nothing more of it until we got home from my in-laws. When my head felt like it was going to expolde and boom headache turned into migraine from hell.

I took some co-dydramol but it did nothing. Then at about 10pm I was very sick and my head felt like someone was smashing me with a sledge hammer. My pacemaker was going off quite alot while my head was thumping.

I ended up taking more co-dydramol at 12.30am and still couldn't sleep. These painkillers didn't work either. At about 1.30am I almost woke my husband up to take me to the hospital, it was so bad. But there was one last thing I could try a very hot bath and I just lay there for over an hour until the bath water went cold. Only then did the pain subside enough for me to finally get some sleep.

This morning my husband had to take our daughter to school as I was in no fit state to do anything for most of the day. The poor thing, my husband that is, has had to take the whole day off work unpaid. It is only now that the pain is finally going away.

This is the worst migraine I have had for about 4 years!

School applications

I have filled in my daughter's school application. She already goes to the nursery at the same school but this does not guarantee her a place in the main school.

As I'm trying to get her into a church school we have to wait for the school to send us another form to fill in, and that's additional to the online form that we have already filled in.

I want her in this particular school as we go to church most Sundays (I can't say every Sunday as we visit our family over some weekends) and my daughter goes to sunday school, which she really enjoys.
She got a lovely bible from the school last week and will sit flicking through the pages, even though she can't read yet. I have read her the story of Noah and the ark, Genesis 6-9. She likes that story as it has animals in it.

But back to the application process.
You can put down that you need to go to a particular school because of a health problem. I did need to use this option when I got her into the nursery as, at that point, I was collapsing every 3-10 days with no warning signs, so could have collapsed on the way to or from school. Even though the school is only 745 meters from our door it is not classed as our local school. The 'local' school is 1245 meters away from my door.

This time though, as I have had my pacemaker fitted and am not collapsing ('touch wood' as they say), I don't think it's approperate for me to use medical grounds for a school place for my daughter.

I have only put down the church school on my application, even though you can have up to four choices. My daugher loves the nursery school and she wants to go to the 'big part' of the school. She has grown so much since starting there and I want that to continue.

In January I will have to fill in another application for my son to start at the same nursery. 

My daughter, my carer.

As you will know from my other posts, having Vasovagal Syncope is the bane of my life.

My daughter has been looking after me ever since she could crawl! Every time I collapsed she would sit down by my side and stroke my hair, and she would not let me get up for at least twenty minutes after. If I tried to get up she would say 'mummy lay down' and push on my chest to stop me getting up. After that she would only let me sit up on the floor. It could be over half an hour before I even got on the sofa for my sleep.

She is only just four years old and has been very worried about me for most of her short life. I do think that it scared her as she would not know if I would wake up and when I did I would most likely have some kind of injury.

Meny times she has had to get me an ice pack out of the frezer for a spained arm or broken wrist. I did once brake a coffee table and now have a very nice dent in my arm, which will be there forever.

My little girl has been my rock and she even now asks if I'm going to 'boom head', one of the little names she has given my condition.

When I had the Reveal device implanted she would go get the remote when I collapsed and press the button to make it record. She loved doing this as it made her feel important. Not that she was not important before she has been that since the moment she was born :)

When I told her that she was going to start school she got very worried about what would happen while she was not with me and said she didn't want to go to school. But she did start teaching her little brother want to do if I collapsed. But when we made the dission to have the PM it was partly for her and my son so they could have a normal childhood and be able to go out and not have that worry in the back of their minds that something could happen to mummy if we go out.

I am glad now that I have my PM she dosen't have to worry anymore, and she can have a proper childhood.

Ticking Clock

I can feel my pacemaker when it activates. It feels like the tick of a clock, it does not hurt but I am aware of it. It usually goes off for a minute then stops, but sometimes it will go off again a few minutes later and at that point my heart feels like its has moved to my throat and I sometimes feel nauseus.

I have been told that this is because my pacemaker is set to a very sensitive level so it will activate as soon as my heart drops below 60bpm. This could have been changed at my first checkup, to make it less sensitive, but I was worried that if my settings were changed I might collapse again and, having not collapsed for six weeks, I didn't want to tempt fate. I asked the pacing doctor (that's his job title, not an indication of anxiety) to leave it alone as it lets me know when it's working and puts my mind at rest. My pacing doctor was happy to leave the settings as they were.

I was also told that the battery would last ten years. The pacing doctors will always tell me how long the battery will last every time I go for a check up, so the count down is on. On average a battery lasts ten years. I'm 32 now so I could need five or six battery changes in my lifetime and possibly one or two lead changes. Lets hope the technology gets better and the batteries last longer so I might need less replacements in the future.

This ticking clock is my new reasuring friend. As time goes on my body is getting used to this sensation and I'm not feeling it as much as I did when the pacemaker was first implanted.

Exercise with a Pacemaker

So I feel fat!!!

Not getting much exercise before and since having the PM. I'm currently a size 14. I used to be a nice size 10 top half and a size 12 bottom half. Now though, I have a nice belly which looks like I have a shelf, this is down to the two C sections I have had. I so wish that the hospital could sort this problem out, a nice tummy tuck at the same time, that would be nice.

I have been told that now I have had my 6 week check up for the PM I can get back to normal exercise. But what is normal these days. As we all know the country has and obesity epidemic. Going by my current BMI, body mass index, I am in the over weight category. Only just but I am over weight.

Now back to the exercise problem!

The only exercise that I have been doing is the school run. Most of the time the school run consists of fast power walking, pushing my sons buggy, to my daughters school in the morning and a slow walk back home. Then another fast ish walk, dragging my son who insists on walking, to pick her up at lunch time and another slow walk back home for lunch. Other than that the odd walk into town is all the exercise I do.

Must try to do more but what?

Swimming is out as the open air pool is only open from May till the first week of September. The nearest indoor pool is a fun pool so lane swimming is out.

Running is another option but with the nights getting darker and with my husband getting back from work when it's dark outside, I have no one to look after the children, while it is still light. Which would only leave the weekend and that's family time.

Joining a Gym is also out as I have no extra money for the extortionate fees you have to pay them. I did join one once when I had no children and a full time job. But even then it was costing £60+ per month and they didn't even have a pool.

So for the moment it's the school run and the Wii Fit for me.

Scars

My scars or hurtys as my children call them. I have meny on my body and I now have two more. One for the pacemaker and one for the removal of the Reveal device.

These scars are just part of me now. At the moment they are reddy pink colour and they will fade in time. Well that is until I have to have a new pacemaker put in in about 10 years time. Then its more scars but this is the life I have chosen and it is much better than collapsing all the time.

Then there are the other type of scars. Then mental ones, we all have then. I'm lucky I have only a few of them but the biggest one and one that I'll never really get over is the death of my father. I still miss him and I think I always will. But I know we will be together again one day.

He had a massive heart attach that he did not recover from in 2006. At the time I was living with my then boyfriend, now husband, in a rented flat. We had a call very late at night from my sister to say that the pararmedics were at home, I still call my mum's house home and I think I always will, and working on dad as he had had a heart attach.

After the phone call there was a rush to the hospital. Only thing was we didn't have much petrol in the car and had to call a friend to meet us at the petrol station.

Just as we got there I recieved a phone call that was to change my life. MY DADDY HAD DIED. It was like my heart had just been taken from me. Then the tears came, and are staring now as I write this, they did not stop.

When my friend meet us he came and sat with me while my hubby filled the car. He have me the biggest hug and I told him that my dad had died. He knew what I was going through as he had also lost his dad at a young age, my dad was only 53.

We finally got to the hospital and were taken into a room where my fathers body had been taken. With my mum, two brothers and my two sisters. I said my good bye through a vail of tears. Mum took off his wedding ring and we left.

Somehow we got back to my mum and sat in silance until it was light.

There were meny tears shead and I still well up every now and then. This time of year is just one of those times when I like to remember him.

I'm not certain why I have writen this blog I think I just needed to write it all down and get one of my stories out there.

My Osteopath

I first went to see her to get some help with my migraines, which I have had since I was 11 years old. This was before I had my first child, after which I had started to collapse. She started by taking a history of my medical conditions and then did some work on my neck and upper back.

I came away feeling so much better but it was well over a year before I went again. This was because I had had a very unhelpful appointment at my local hospital about my vasovagal syncope, at which the doctor had told me the condition wasn't life threatening and I would simply have to live with it! I was so upset.

My husband suggested I should called my Osteopath, which I did and got an appointment. She was very intrrested in my condition and we had a long chat about what had been happening.

She treated me again and I went a full 16 days before I collapsed again. It was the longest I had gone, so I started seeing her every two weeks. I was still collapsing but it would be about 10 days after treatment that I would start collapsing again.

However, it soon got too expensive to see her twice a month, so we went to monthly appointments.

I found that just having that half hour every month was very relaxing and helped me a lot. Not only was I collapsing less often, it was also nice to open up to someone who was not close to the situation.

I loved having that half hour of peace and calm after a stressfull month of collapsing and not going out unless the children or I had a doctor's appointment. I don't drive (and wouldn't have been allowed to anyway because of my condition) so if I did ever go out I had to walk.

We used to live in a top floor flat at the top of a very steep hill, and going out was always a worry in case I collapsed. The route down the hill into town was along a busy round and if I did collapse there, the children's buggy would have continued down the hill and straight into any traffic that was coming along. So for most of the time I just stayed inside all day in our tiny flat.

Sometimes I wonder if I did the right thing but I couldn't risk my children's safety if I collapsed on a road.

Going to see my Osteopath helped the stress of it all. The 'pummelling' as I call it, was good also and so was the chat.

I still see my Osteopath evey month even though I have not collapsed since having my pacemaker implanted.

2 Nights in Hospital

So the day arrived and I was off to the hospital for my pacemaker implantation.

After a very sleepless night I got up, repacked my hospital bag just to check that I had not forgotten anything, got the children up and made sure all their stuff was also packed, as they were going to stay with their nanny (my mum) for the time I was in hospital. We thought that this was best as my husband could then accompany me while I was admitted.

With the children and us fed, we checked one last time to make sure we had everything, and then we were off. First stop; my mums house.

Once we had dropped the children off it was a walk to the tube station, then two underground lines to South Kensington.

My admission time at the Royal Brompton Hospital was 2pm. We arrived half an hour early and I was shown to a waiting room as my bed was not yet ready. An hour later my bed was finally ready for me and I was allowed to choose from six beds. I decided that the one near the window on the left side of the room would suit me fine.

Once I was settled, a very lovely nurse who was about my age came to do the paperwork and give me my identitiy wrist bands. I also had two lovely red ones as I am alergic to NSAID's, which translated is non-steroidal anti-inflamatory drugs.

I then had a cannula put in my elbow joint, as a ward doctor could not find a suitable vein in my hand (they are there though). Through this I had my blood taken. I was then put on an ECG monitor to see what was happening to my heart. It recorded that I had bradycardia (slow heartbeat).

After this I was wired up to a little box that transmitted to the nurses station what my heart was doing, so they could keep an eye on me and would know in advance if I was about to collapse.

The veiw from the window was not the best. All I could see was the tops of the other hospital buildings but at least it was a veiw.

Having been in the hospital before, I knew the food was suposed to be good and now I was going to try it. All I can say is that the food was the best hospital food I have ever had.

Then it was time for my husband to leave but before he did, one of the doctors came round to say that I should be going down for my operation at 2pm the next day.

I always hate it when my husband has to leave. It was only 8pm and I was all by myself, although there were other people there. In the bed opposite me was a lady about my age who had had a pacemaker since she was a child. Then there were two spare beds, one either side of the room, then on the same side as me was a lady whose heart was beating too fast and opposite her was an older lady waiting for a heart by-pass.

We all had a chat then I got out my sister's eee-pad that she had kindly lent me for this hospital trip. I was watching Japanese anime series AKB0048, which my brother has got me into but after a few episodes I got a bit tired and got ready to go to sleep.

It was another restless night, can anyone ever sleep in hospital? I was woken up at 6am by the nurse who came to check my blood pressure and give me my meds. Over night they had been quite worried about me as my heart rate had fallen to 40 beats per minute. This is something I would never have known if I didn't have this little box with wires attached to me.

So the day had come. I was given a hospital gown to wear and some special soap to wash with. Everyone except me and the lady two beds down had breakfast, we were nil by mouth.

Then the nurse came in and said that I might be going down in the morning instead, so I had to get ready... NOW. Off to the shower the nurse and I went (I was not allowed to wash alone as they were still worried about my heart rate) and I washed, then changed into the hospital gown - you know the type. Bum hanging out the back...

Having washed and changed, I had to go back to my bed and wait. I waited and waited, and then waited some more. Morning turned into afternoon and lunch had come and gone. Finally a porter came to get me at 2pm (the original time!).

I was taken down to the cath lab and left outside, happily sitting on my bed. A multitude of doctors then came out to talk to me and one gave me some very strong antibiotics via the cannula in my arm.
I was then asked to walk into the cath lab, where there was a bed with lots of computer screens at the side of it and a very big metal arm thingy with the x ray machine in it.

I got onto the bed and had my arms put in some scoops that were placed beside the bed. The pacing doctor then put even more stickers on me so they could monitor my heart throughout the procedure.

Finally, my consultant showed up and we had a little chat while the scrub nurse put iodine on my upper chest and over my shoulder. I was then given some sedation and had an oxygen mask put on my face.

When the local (yes, local!) anaesthetic was injected into me it stung at first but then my shoulder went numb. I must state at this point that local anaesthetic does not last for long in my body.

I could feel that my consultant was pressing on my chest and putting the wires in place. Once it was all in, the pacing doctor tested the device to make sure it was working. Then it was time to close me up. I could feel the stitches being put in, so I told my constultant. He said that he only had a few more to do and it would hurt more to have extra local put in than him finishing stitching me up. So I gritted my teeth and shed a solitary tear!

After I had been stitched up, he put some glue over the wound so I did not need a dressing. Then it was time for more local anaesthetic to have my Reveal© device taken out.

If I thought the last few stitches had hurt, this REALLY hurt as the local had to go directly into the scar. Thankfully this part of the operation was very quick.

Then it was all done and another test for the pacemaker. All was well so back to the ward for me.

It was about 4.30pm when I got back, so the op must have taken about two hours.

Once back on the ward I was in a bit of pain as the local had worn off, even though it's supposed to last four hours. My lovely nurse gave me some codine and paracetamol which took the edge off the pain.

I was so looking forward to my dinner, as I had been nil by mouth since the night before, and when it finally came it was SO nice. I always find that your first meal after not being able to eat for a while tastes the best - must be something to do with giving your taste buds a rest.

I had another uncomfortable night and was woken again at 6am for more checks. During the night my heart rate didn't go below 60bpm as that was the lowest rate that my pacemaker (PM) has been set to. If my heart rate falls below 60bpm the pacemaker will kick in and pace me for a minute. I also have what they call rate responce which will kick in very strongly if my heart drops very suddenly.

In the morning the pacing doctor came round to check the PM and everything was working fine. I just had to wait to be sent down for an x-ray to check the leads and then for a chat to the doctor before I could go home. But this took all day and I even got to stay for lunch.

The doctors were taking ages (as usual) and I was finally sent down to x-ray. My husband came to collect me ten minutes after I came back from x-ray but there was even more waiting. Finally at 2.30pm I was discharged.

The weather was horrid. We had only walked down to the end of the road and the heavens opened, monsoon style. We were both soaked to the skin for the trip back to my mum's to pick up my children.

It was so nice to see the little monkeys, I had missed them so much. They didn't know how to hug me and in the end we settled for side hugs. They both wanted to see the 'hurty' as they have named it. I have big hurty, the pacemaker scar, and little hurty which is the Reveal© device scar.

After my mum had fed us and dried our wet cloths, we went home. I did find that the seat belt hurt so I needed to put a towel there to pad it.

My first night home was a sore one but I got through it.

The journey begins

So my first appointment at The Royal Brompton was good, as I finally got to talk to a doctor who understood my condition. He put me back on the Midodrine, as when it didn't work the first time the dose should have been increased rather than stopped.

I went away happy that something was being done and I looked forward to my next appointment.

In the meantime my husband had been keeping a log, on an excel spreadsheet, of all my collapses and I decided that I would also go to an Osteopath to see if she could help me, but more about that in another blog post.

My next appointment was after christmas. I was put on another drug called Ivabradine, which I was to take with the Midodrine. My consultant told me that he wanted me to have a Reveal© device implanted into my chest to monitor what happened to my heart when I collapsed.

Well, I was offered an appointment for the implant and it was on our wedding anniversary. I took the appointment, as I thought it was best to get it over with. But, to cut a long story short (I will blog about it later), it was cancelled on the day after I'd been at the hospital for over 8 hours and hadn't eaten since 9 o'clock the previous evening.

Eventually, after a very angry letter was sent to my consultant, I was given another appointment for April 2012. This time it all went ahead. Mine was the first operation of the day and I was on my way home by 2.30pm the same day.

I was given a remote device so that I could get the implant to record when I collapsed. After a while, the recorded information showed that my heart was actually stopping, so back into hospital I went for a chat with my consultant about having a pacemaker.

We decided to go for a pacemaker and I said that it would need to be implanted before my litle girl started school in September.

You might think that this was a daunting prospect, but I was actually relieved as it meant my children would no longer be scared every time I collapsed.

My appointment came through for the last week in August and I went into hospital for two nights.

I will post more about the actual experience on my next blog.

So I have a Pacemaker!

I have had this pacemaker for 8 weeks now and I can say that I have not collapsed since having it implanted.

The road to get my PM was a long one. After having my daughter by emergency C section at 35 weeks, 4 years go, I started collapsing - not very often at first, 21 days at a time, but they started happening more and more often. In the end it was happening every 3 to 10 days.

So first my GP sent me to a Neurologist who sent me for loads of tests, and he also sent me to see an ENT doctor just in case it was something to do with my inner ear. After a while we found that it wasn't my ears, so I was sent for an MRI. However, before I could have it done I had to have a pregnancy test and it showed I was pregnant with my son, so no MRI for me until I had had him.

While I was pregnant the collapsing stopped. I thought "Thank God it has stopped!" but, oh no, after another emergency C section at 34 weeks, and once the little man was 12 weeks old 'Bang!' off it all starts again.

So back to the hospital and MRI scan which showed a brain, so I do have one in my head, and it was normal.

The collapsing was still happening but as it was not neurological I was discharged, but with a menton that it could be my heart and I should go see a cardiologist.

Off to the cardiologist I went and he suggested I might have Vasovagal Syncope. So he sent me off for a tilt table test in London to confirm.

The very lovely syncope nurses did the test and bingo! - Vasovagal Syncope. They said to try Midodrine. Back to my local hospital and I was put on Midodrine and told to come back in one month.

One month down the line and the Midodrine had not worked. My normal local hospital cardiologist was on holiday so I saw a locam doctor who told me to come off the drug and to 'just live with it!'

I had gone to the appointment with both my very young children and left very upset and had a long tearful telephone conversation with my mum, then husband.

I wrote to my consultant a very long and upset letter saying that the collapsing was getting worse and I had already collapsed with my son in my arms. Also my little girl was being my carer and she would sit with me stroking my hair while I woke up.
By this time I had already broken an arm.

Once the doctor had received my letter via email he arranged an appointment to see him and said that, as I have a very specialised condition, he was sending me to the best team in London who had just moved to The Royal Brompton hospital.

So I had to wait for another appointment, which came in October 2011.

That's when my journey really began.

About Me

So this is my first blog so I thought I would say a little bit about myself. I'm a mum of two who has Vasovagal Syncope and a pacemaker which was implanted on the 24th August 2012.

I had the pacemaker because the doctors found out that my heart was stopping for a few seconds which was making me collapse every 3 to 10 days.

So a new friend has suggested I write a blog about what has happened and how it has effected me and my family.

So here we go...