What a year!

Well it  has been a long time since I last blogged!! A quick update about my heart as a run on from last post...
I have a 'sort of type of latent hypertrophic obstructive cardiomyopathy' but it's caused be the EDS they think. My heart and it's parts are too stretchy so when it is under the smallest amount of stress things happen!! My septum bulges and blocks the flow of blood out of my heart into the aorta, my mitral valve is floppy and slightly dilated and I get regurg through it, I also have a dilated left atrium and a dilated aortic valve.  The MRI showed that I have moderate global hypokenisis, basically my heart isn't pumping properly.  I have bradycardia and severe exercise intolerance!

Anyway that's that! Nothing else is being done about it.  I have found out recently I have quite bad sleep apnoea too, which isn't good for my heart!  But I have now got a nice little CPAP machine to help. My Fibromyalgia pain seems to be getting worse but flare ups are further apart, I presume the warm weather is helping. Unfortunately the warm weather is playing havoc with my dysautonomia and the fact I don;t sweat enough! I just pass out at the slightest bit of hard work lol.

This year has seen my headaches and migraines get a lot worse!! Not sure what that is, I suppose some of it will be stress related.

Another thing that I hate this year for is the devastating news I received from my mum.  She was diagnosed with untreatable pancreatic cancer 2 months ago and it is now spreading.  She is taking it well, she is ready for is she says.   She has even sorted out her own funeral and divided her belongings!! I am not taking it well at all though. I can't even begin to even think about a future without my mum!! It's not fair :(

One good thing to happen this year though is  I passed my driving test!! I have my little car, Fanny I called her, and I can now drive the 200 odd miles to visit my mum as often as I want!!

Well that is it for now, I have to drive Amber to work!! Good job I love driving!!

Cardiac stress test

So after thinking I might have cardiomyopathy they decided to send me for a stress echo.  I had this yesterday on the supine bike. He wasn't going to do it at first, he said the thickening and other things happening were more than likely dynamic heart!  He decided he wasn't happy to let me go as the increased velocity in LVOT shouldn't be there and he wanted to find out for himself what was happening.

Got on this contraption!!! Was wired up to the heart monitor and had a resting echo, bp and trace taken.  Then I had to pedal for about 10 minutes with resistance being added every 2 minutes!!  It was very hard work!! I got my heart to the desired rate no problem but as I started to see my heart beat in my eyes and feel it trying to come out of my chest the doctor and the technician started whispering and looking concerned.  I could hear words like 'should be there' and 'oh I was wrong' and 'I have no clue'!!!  Hmmm didn;t sound good!!  They stopped the machine after 8 minutes and took more readings.  Apparently the velocity which he thought would go up beween 0.5 - 1.5 mps actually went up over 5 mps and that was a concern!!  He said it shouldn't do that!!  Also while me heart was working I have mitral valve regurgitation and my septum bulges out causing an obstruction of blood flow out of my heart!  He has no clue why... although cardiomyopathy fits, but I am not a doctor lol.

So after the test he runs out of the room and sends an urgent fax and leaves his next patient waiting while he 'pops' to his office..... hmmmmm....

I have to wait now for an appointment to discuss this and my MRI.... this will be a looooong wait!!!

MRI Update

MRI yesterday was ok.  Had a panic attack before I went in but I managed to calm down enough for them to slide me in the tube.  I lay there with my eyes closed... it was ok.  I didn't really notice I was in there though because I closed my eyes before I went in and never opened them!! lol.  I would do it again if I had to. Now we wait for an appointment to discuss my results...

Cardiac MRI

It's been a while!! I have to go for a cardiac MRI tomorrow morning.  Not looking forward to playing torpedo for 2 hours!! They will be measuring the thickness of my heart muscle and the degree of obstruction it is causing.  Also they will check all the arteries and my aorta for weakness or dilation or something or other! I will hopefully remember to update tomorrow!

New diagnosis!!

So I went to see my cardiologist on 5th.  Saw a lady who was taking his clinic while he was away and she was amazing!! She explained everything they found in my echo step by step!!  So my diagnosis is cardiomyopathy but I don't know how bad as yet.  I have to have a stress test and an MRI to see how much of a risk I am of sudden death. I think maybe I am somewhat of a risk as I have the fainting and dizzy spells and the shortness of breath.
The increased velocity in the left ventricle outflow tract to which my horrible rheumy said "I doubt this is of any significance" is caused by the thickening of the heart muscle making the outflow tract narrower and so the blood is being squirted out like a hosepipe when you put your thumb over the end!! This is causing me all kinds of problems at the moment.  Discovered there is a 50% chance I have inherited it too!  I don't think this is related to EDS at all...

Wow a lot has happened since my last blog! I went to the University College London Hospital to see Prof G's team.  I saw a lovely doctor who's name I forget now!!  She went through a very thorough questionnaire with me and examined me. I was in there for about 30 minutes or so.  At the end of the examination she finished writing her notes and told me that I now have an official diagnosis of EDS type 3, she is writing to my doctor to get her to refer me to podiatry, hydrotherapy, occupational therapy and best of all PAIN CLINIC!!!! I will need physio on my back too because I have lordosis and the pain is quite intense with it.  I am so relieved to have a diagnosis and more so a plan of action to help me!! I could not be happier!! Well I could but this is as close as it gets lol.

I am also now on ESA.  I have a huge form from ATOS to fill in and maybe an assessment in the future. I don't understand all these groups and things but I am sure I will get the hang of it lol.  DLA next...

Autumn is here!

So it has been raining non stop since last night!! Had to get a cab to the school with the kids as I was in far too much pain and very stiff. Walking was a bit of a challenge!! The cabs, of course, were all busy with the weather being crap so the kids were late for school AGAIN!! oops!

When I got back home I noticed my hands were a lovely assortment of colours. Sort of grey fingers, purple around the knuckles and backs of hands with orange splodges!! They hurt too!!  Time to buy some gloves then!

I need to get Haydie sorted with a special needs buggy too! The buggy we have is very old now but the worst thing is the rain cover is too small.  Poor Haydie gets soaked when it rains. I think this is a good thing to ask the family fund for...