Not out of the woods!

What a dreadful story. My heart truly goes out to you. What a hideous hideous time you have had and I hope every single doctor you have seen is made aware of your plight. Good luck for the future.

Oh ruby no wonder you're angry, I would be too. I hope they can start getting you better as soon as possible, you've gone through so much.
Don't dwell on what you've missed out on, concentrate on the future when you'll be painting the town red!!
Good luck love xx ???

It is so very frustrating when you feel you are banging your head against a brick wall - I spent a very long time telling the hospital that there was something not right about the foot I had broken - they patted me on the head and said: "It is just where the plaster has been" - no, it was a second missed fracture - I will walk with a stick for always now. So I do understand your irritation.

But.....it is no good looking back or going down the road of "if only" - it really gets you nowhere. You can only look forward and hope that proper diagnosis and treatment will be forthcoming. I will be keeping my fingers crossed for you.

I went through PALS at the hospital and they said that they could not convey my concern about not being listened to the docs in the hope that it might not happen again - you can only make a formal complaint. In the end I did, but it did
not gain anything - everyone was so busy trying to protect their backs that they did not look at the positive things that could have come out of it.

Take care.

Take care Ruby. You have had a tough time so treat yourself to something nice??

I'd no idea about your poor health and am very sorry to hear of it. I do hope it can be put right very soon.

Please, please do consider making an official complaint. My son's work covers the field of patient safety, where he and his team have done some sterling work. For some of it, they depend on people like you voicing their thoughts about the service they've received.

Oh Ruby, I would be spitting feathers if this had happened to me, I'm so sorry to hear this.
Please do send a formal complaint, it may give you some answers and perhaps help you to come to terms with the whole thing.
I do hope that you start feeling better soon and can be reconciled with your DS ?? x

Ruby, I am so sorry to hear all this and hope the doctor can get things sorted soon.

Thank goodness you have been listened to now, Ruby. In some ways I agree it is better to just think to the future, but if your anger doesn't leave you it can do no harm to chat with PALS at your hospital. They will at least listen, which always helps, and can explain options to you, including how to access your records if that will help you to go forward. Will have grapes at the ready should you need to be in hospital. In the meantime sending hugs, and to keep you going.

What was this test you had, Ruby?

Hi Ruby how are you today?
I know you are probably still in a bit of a tiz and trying to get your round it all
But to help your heart rate, I hope you are feeling a bit more calm.
Have you had any discussion with the consultant about the best way forward medically?
It is hard but sometimes its easier to deal with a diagnosis than with uncertainty.
I know you are still young Ruby so hopefully you will be able tackle it (your treatment) head on.

. Remember onwards and upwards!

Thanks to you all for your words of support.

Yes, Cherry I am in a bit of a state just now. I feel like having a good cry to be honest, I shouldn't have been left like this for so long. Also online it says that mortality rate is up to 5 years living with this. I've been complaining about it for 4 years so that is a huge worry in itself. I want the operation done quickly. I don't feel safe at home on my own knowing that something so serious is wrong. It's no use me keep taking my inhalers to help the breathing when it is my heart that is struggling to pump blood round my body. It's so scary. Not the thought of the operation, but the thought of putting it off for months. The national waiting time is 24 weeks. I can't wait that long. Not that I am a diva or anything but it's been long enough already.

I will tell my doctor all this when I see him in a few hours. But the middle of the night and something to worry about don't mix well, especially with no one to talk to about it. I might even phone the Samaritans yet, just to talk to someone, not that I'm thinking of doing anything stupid, but my thoughts will overtake me if I don't try to reason them out. I've been ok up to now, practical, buying myself some button through nighties and wash bag etc to take with me.

I'm putting an order in that if I ever come back for another life on this planet, that I get an easier ride. Talk about being kept on your toes, it's not in it. Keep smiling though, right?

Ruby, The best hospital in Uk Is "the chest and heart hospital in
Liverpool."...you have choices now where you can have operations and where you can see specialists. That hospital has the best results / care etc .

Yoga Thank you so much for that, I have just phoned the hospital and they do take patients from my area. I had my last surgeries in Liverpool, allbeit The Royal Liverpool Childrens' Hospital, and was really looked after very well.

My priority and worry though is finding someone to take care of my Maggie until my son can get home. I love her so much I can't bear the thought of her being without me, even for a short time. She gets excited when I am home after being out only a little while. I don't know how she will go on if I am away for days. Or me.

Oh Ruby how awful. You must have been feeling so, so dreadful. I hope you lay it on the line for your gp when you see him but only if you can do it without damaging yourself in any way. I really hope you get the medical intervention you need sooner than you think is possible.
If you can't find anyone to take care of Maggie then perhaps a kennels might be the best option as at least you would know that she would be well looked after.
Try not to get angry and stressed as it won't be good for you.Take very great care of yourself.

Let us know how it goes with the doc this afternoon ruby.

thinking of you ruby

of thanks to you all.

Echocardiogram next Wednesday and then seeing a cardiologist. Hopefully it won't be the same one I have been seeing as he hasn't discovered this problem in the last 3 years of seeing him!

The problem with kennels is that she hasn't had her injections for a couple of years after she had a terrible reaction to them. She was very poorly for a week the last time she had them so I haven't had her done since. And kennels need an up to date injection form. I have found a website called Borrow my dog where people who love dogs but cannot own one for whatever reason, dog sit and walk yours for you. Wheels are in motion, I have found a walker but not a person who will take her overnight yet.

The hospital at Liverpool which Yoga recommended has relative rooms that my son would be able to stay over at while I was in intensive care. If he has to travel, it would take him about 3 hours each way. So I would need doggie help while he is with me.

This is where other family is supposed to be there for you, two bloody siblings, one daughter and no help. Poor son has to do it all on his own - again.

Ruby no wonder you are angry contact pals they will guide you as to best way to complain and how to access notes but try not to get too worked up it won't help your condition hope you are there any foster for animals near you hope you get sorted soon ?

Ruby I know your still young but give age uk a call and ask if they know of anyone who look after pets while their owners are in hospital.

Hope you had an ok night.
Thinking of you x

The Cinnamon Trust helps pet owners going into hospital by finding foster parents, but it is a pity about the vaccine situation - obviously Unavoidable in the circumstances, but it does leave the dog at risk and would be upsetting if it were to catch something while in the care of someone else.

I too was going to suggest the Cinnamon Trust. Do you have a local fb page where you could put out an appeal for help? People can be amazingly helpful sometimes to complete strangers. You'd have enough time to get to know them and for your little dog to know them too, if the op is not imminent.

Well, echo and ECG done today. The doctor said he thinks that it's the aortic stenosis which has got worse recently and is causing me these problems. I have to have a camera put down my throat apparently to see the valve? Has anyone heard of this?

Double water tablets and then blood test to test kidney function. If all well, then another tablet added on until all tests completed. Plus lungs to be tested too.

It looks like surgery will be on the cards. Plus, I also learned that the hole in my heart is still not fixed, so that will need to be operated on too as blood is building up in the chamber and not emptying like it should do.

I sometimes wish I was an animal and they just did the doctoring without telling what is wrong, like a vet does with a dog. You know what I mean?

It is good that things are moving on for you ruby but it must be very unsettling. You know we are here for you to talk to.

Sounds like you are getting better care ruby, which is wonderful but of course anything to do with the heart is worrying and the terminology bandied about can be so unsettling. It's every day language to the medical staff but not to us. A close family member has a similar but not identical chronic heart condition and has an allocated nurse specialist to talk to and ask questions about potential or actual treatment. She often would rather not ask too many questions but this person has her permission to talk to her Mum and husband who do want lots of detail. It helps them a lot. I wonder if it's worth asking if there is a similar person available for you? Probably less scary than Google. Hang on in there. .