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[Guest]

e-mail sent to my local ECG dept today....I ALWAYS give thanks where it's due....

 

 

Dear ******

 

I got your mail address by phoning one of the girls in the ECG dept at Halton.

 

I have Marfan Syndrome and have had to have echo cardiograms for many years and I have always dreaded them as every one I have had, the nurse has pressed so hard on my chest it has always been very painful indeed. So much so that I stopped going for a few years as I couldn’t bear the pain of it any more. It’s painful possibly due to the shape of my chest which is concave.

 

My GP told me recently I HAD to have one as I hadn’t had one for such a long time and I’ve been working myself up into cold sweats worrying about having it, so much so that my GP gave me some diazepam to help calm me down to get me through it!

 

I went today to Halton ECG and a lovely, gentle nurse called ****** did the echo. I told her how anxious I was and she was amazing. It didn’t hurt a bit and she said that sometimes people can press harder than they need to.

 

I just wanted to tell you how wonderful I think she is and she should teach other people how to use the machine, as the way she did it is obviously how it should be done, i.e. painlessly!

 

Tell her she’s brilliant and if I have to come back, I want her to do my next echo!!!!

 

Kind regards

 

***********

 

right, off to see the girls as I need chicken cuddles!!!!!!

[Tessa the Duchess]

Hi Poet, I just googled Marfan Syndrome, hope you don't mind, but I am a curious person and had never heard of this syndrome before. I hope you do not suffer too badly from the symptoms. I think the e.mail you sent was a great thing to do, pity you didn't just happen to have a box of your eggs with you to give the nurse but how could you know you would have such a positive experience.

 

Tessa

[Egluntyne]

Am glad it wasn't too bad.

 

My daughters friend's sister has Marfan's syndrome.

[Jules.]

good news

glad you took the time out to let them know.

[Guest]

got a lovely mail back just now too which has cheered and reassured me...

 

if I have to go back, I'm definitely requesting to go to Halton!!!!

 

Dear Justine

 

Thank you for your email.

 

I will pass on your comments to ******. However in future when you come for your echo even if you find it is not ***** please please tell the Cardiac Physiologist doing the examination that you are very sensitive and I am sure they will do their utmost to ensure that you do not suffer any pain or distress but if you wish ***** to do our examination then when you get your appointment give me a ring and I will try to sort it out for you

 

Thank you once again for your kind remarks we always do our best to make the patients feel as comfortable as possible and it is good to know that our efforts are appreciated

 

Kind Regards

 

I'm not affected as badly as some poor sufferers of Marfans but they need to monitor me and I do have arrythmia and a lot of the physical characteristics- fingers x'd I have a few years left in me yet!

[Guest]

Hi Poet, I just googled Marfan Syndrome, hope you don't mind, but I am a curious person and had never heard of this syndrome before. I hope you do not suffer too badly from the symptoms. I think the e.mail you sent was a great thing to do, pity you didn't just happen to have a box of your eggs with you to give the nurse but how could you know you would have such a positive experience.

 

Tessa

 

good idea!!!! My dad used to work for Dunlops many years ago and he used to take golf balls to the dentist to thank him for being gentle with me (Marfan sufferers have to be careful with their teeth!)

[Guest]

Am glad it wasn't too bad.

 

My daughters friend's sister has Marfan's syndrome.

 

 

hope she's not too badly affected, Some people have a few symptoms and some have them all.

 

Joey Ramone had it and it was rumoured that Abraham Lincoln had it too but they both died of something unrelated to their Marfan's, gives me hope!

 

There was also an actor, Vincent Schiavelli(sp?) who had it too.

[Egluntyne]

She's not to bad. She is working and seldom has time off. She is 6ft 4ins. Has the very long fingers, high arched palate and coarctation of her aorta which has to be followed up, but she does very well.

 

They reckon Osama Bin laden may have it....he is very tall, has a heart problem and walks with a stick, which shows, it is suggested that he has the skeletal problems that sometimes occur.

[Guest]

She's not to bad. She is working and seldom has time off. She is 6ft 4ins. Has the very long fingers, high arched palate and coarctation of her aorta which has to be followed up, but she does very well.

 

 

I'm 6 ft 1 - very long fingers too, I have a floppy mitral valve which causes a murmur plus the palpitations, high arched palate, concave chest (which affects my lungs) but I think (hope to god) my aorta is doing well.

 

I'm 37 and it's only really been the last cple of years I've found it to be slowing me down more than normal.

 

Send her my regards and I hope she continues to do very well

[Egluntyne]

Send her my regards and I hope she continues to do very well

 

I will....thank you.

[Guest]

Poet, that was a lovely thing to do - we always make a point of making sure that good service is applauded, whether it be excellent service during a meal, or a member of staff who has gone out of their way to excel at their jobs - everyone needs a pat on the back, and a show of appreciation every now and then. As a country, in general, we are all to quick to complain when someone is rude, or we receive shoddy service (and I say this out of experience in the catering trade), but rarely are the 'good guys' recognised.

[Guest]

Poet, that was a lovely thing to do - we always make a point of making sure that good service is applauded, whether it be excellent service during a meal, or a member of staff who has gone out of their way to excel at their jobs - everyone needs a pat on the back, and a show of appreciation every now and then. As a country, in general, we are all to quick to complain when someone is rude, or we receive shoddy service (and I say this out of experience in the catering trade), but rarely are the 'good guys' recognised.

 

I find myself thanking people for just doing their job the way it should be done because you all too often come across bad service these days (and it's not always the fault of the person you are speaking to at the time, which some people forget) but when someone excels, I almost end up kissing them!

[chelsea]

Good to hear of good "service" too. Glad it went well for you.

 

I work in customer service for an airline, so get constant abuse daily, its SO nice when even just one customer can turn around and say "you've been so helpful" or "have a nice day", it brightens my day!

 

I bet the woman/nurse was dead chuffed when she received your email of praise.

[Guest]

.

 

They reckon Osama Bin laden may have it....he is very tall, has a heart problem and walks with a stick, which shows, it is suggested that he has the skeletal problems that sometimes occur.

 

Because of my loose joints, I am a bit double jointed too, I used to be able to put my legs behind my head but not these days! Is your daughter's friend double jointed at all?

 

I find it hard to sympathise with OBL but interesting to know he might have it too. His long facial features would fit with the syndrome.

[Ain't Nobody Here]

I had never heard of Marfan Syndrome either so also googled it. There must be so many illnesses or syndromes out there that you can be oblivious to unless you meet someone or someone who knows someone who suffers from one. It sounds like a very difficult thing to live with but I'm glad you don't suffer too badly, Poet (although you don't sound like you have it at all easy).

 

It was a lovely gesture to thank your nurse personally - I'm sure they don't get praised by the public very often so I'm sure she would have been really chuffed.

 

I have mammograms every year and the first one was so painful I almost passed out. I was dreading the next one but I had a different nurse that time and it was so much better and didn't hurt at all. I did tell her how grateful and relieved I was!

[Egluntyne]

I have mammograms every year and the first one was so painful I almost passed out.

 

I did pass out the first time I had one. It was soooo painful.

 

I still have to psych myself up to go even though it is only every three years.

[Guest]

I have mammograms every year and the first one was so painful I almost passed out. I was dreading the next one but I had a different nurse that time and it was so much better and didn't hurt at all. I did tell her how grateful and relieved I was!

 

 

get some diazepam next time, I'd recommend it I couldn't have crossed the threshold of the ward without it!

 

Hope your next one goes okay. I've been told I can request the same nurse next time which is brilliant but even so, my experience this time round has done a lot to allay my fears.

[Guest]

I have mammograms every year and the first one was so painful I almost passed out.

 

I did pass out the first time I had one. It was soooo painful.

 

I still have to psych myself up to go even though it is only every three years.

 

so sorry you have to go thru that, it sounds horrible!

[Egluntyne]

It was a bit grim. A necessary evil though.

[Guest]

It was a bit grim. A necessary evil though.

 

i think part of my problem was they used to press so hard on my breast tissue too to get a good picture of my heart.

 

Anyway, hope you get a gentler nurse next time, I have a feeling you're a bit tougher than me though, I'm a big wet nelly!

 

take care

 

xxx

[Tessa the Duchess]

I have mammograms every year and the first one was so painful I almost passed out. I was dreading the next one but I had a different nurse that time and it was so much better and didn't hurt at all. I did tell her how grateful and relieved I was!

 

The first time I had a mammogram I was really dreading it, the thought of having my boobs squished like pancakes did not appeal and friends told me 'it really hurts' when I had it I didn't feel a thing asked the radiographer why my friends had experienced pain she told me the denser the breast tissue the more pain you feel, so there you go

 

Tessa

[Janty]

Hi Poet,

It was a blast from the past hearing you talk about Halton hospital. My Mum recieved excellent care there when we lived in Runcorn and she was first diagnosed with her heart problems. The nurses and doctors were so patient and caring. I'm glad that you had a similarly positive experience.

 

Jan

[Ain't Nobody Here]

she told me the denser the breast tissue the more pain you feel, so there you go Tessa

 

Hey, who're you calling dense? .

 

Seriously, though, Poet, a mammogram every year or so is nothing when you don't have health problems that affect you every day, like you obviously do. But thank you for your sympathy!

[Lesley]

I like to remark on good service as well. I decided a few years ago that I would not suffer poor service without making those concerned aware of the situation - and also that I would always comment on good service.

 

My nephew has mild Marfans and is being monitored.

 

.... and as for Mammograms I had my second last week and I'm still uncomfortable!

[Guest]

Hi Poet,

It was a blast from the past hearing you talk about Halton hospital. My Mum recieved excellent care there when we lived in Runcorn and she was first diagnosed with her heart problems. The nurses and doctors were so patient and caring. I'm glad that you had a similarly positive experience.

 

Jan

 

my family all have positive comments about when they've had to visit that hospital and I did mention this to Elinor in a follow up mail I sent to her today. There's always rumours of it closing down though, that would be a travesty. Don't tell me there's another cause I have to put my weight behind!

 

As for poor service, as I said earlier, I just hope everyone remembers that the person at the other end of the phone isn't the cause of the problem, be nice to them, as I'm sure you all are!

 

I work(ed) in a call centre for a well known company and one of the reasons I'm not at work at the moment is because of the stress of being shouted at day in day out (by customers) aggravated my condition.

 

I was totally sympathetic to people's issues/problems but just couldn't do anything about them because of the company I worked for, they had no processes in place to resolve the complaints they were receiving (I really can't go into further details on that, you'll just have to take my word for it).

 

Not sure what the future holds at the moment but I don't think it involves a job in customer services, there's too many shouty people in the world!

Edited November 20, 2007 by Guest