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jet 
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Joined: 21 Oct 2010 Location: Reading Points: 349 |
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 Posted: 15 Nov 2010 at 12:33pm |
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Llaria I do feel for you, I am the one with PH and I know how hard it is for my husband to watch me being so ill. I know at times he feels so helpless. He says what can I do, with tears in his eyes. I feel guilty and it is a viscious circle. I do wish your husband well and to you, all I can say is keep strong and look after yourself too xxx
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Had Lupus for at least 27 years diagnosed with secondary PH in 2006
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Rita
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Joined: 21 Oct 2010 Location: Brecon Wales Points: 397 |
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Posted: 15 Nov 2010 at 12:38pm |
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Dear Illaria
So sorry you are feeling like you do, but I was talking to Jack my
husband as you know I had the operation, and he said he felt just like
you do at the moment, but it is early days and I'm sure everything will
be alright. Intensive care is a scary place for the loved ones of the patient,
I know this as Jack had quadruple bypass and they had to take him back for
surgery twice after the initial op, and I was beside myself with worry, but everything
turned out alright. You hang on in there and my heart goes out to you, please keep us
informed of his progress. Big hugs and best wishes to you and Mark.
Rita xxxx
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To receive a smile give one away
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gerty
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Joined: 24 Oct 2010 Location: east midlands Points: 23 |
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Posted: 15 Nov 2010 at 6:03pm |
 To all the carers and especially Illaria who needs a hug right now......
Gerty x
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YOU CAN'T HAVE THE RAINBOW WITHOUT THE RAIN :)
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lisa .x.
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Joined: 25 Oct 2010 Location: manchester Points: 49 |
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Posted: 15 Nov 2010 at 6:13pm |
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Hi hunns
Illaria i also am sending you BIG HUGS , and all my strength .x. Mell hope your feeling a little higher this week hunn .x. hugs to you also .x. Will be praying for you too hunnys x.x.x take care lisa .x.
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lisa .x.
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Ilaria
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Joined: 15 Nov 2010 Location: London Points: 27 |
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Posted: 16 Nov 2010 at 10:26am |
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Dear All,
thank you so much, all your messages really touched my heart, THANK YOU.
Good news: yesterday when I asked to visit Mark in Critical care I was told "He s back on the ward" and I could not believe what I heard...such a relief...he is still so so so weak, but thank god, he doing well. I will keep meditating, for Mark and for everyone else going through this. by the way, I have been raising some money, which I will donate to PHA.
Much love to everyone and hugs back to you all, my thoughts are for everyone who has to be strong and brave
xxx Ilaria
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Trust the process, don't push the river
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Aleksandr
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Joined: 21 Oct 2010 Points: 209 |
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Posted: 16 Nov 2010 at 10:47am |
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Pleased to hear that he's off CCU and on Mallard
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Simples!
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Rita
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Joined: 21 Oct 2010 Location: Brecon Wales Points: 397 |
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Posted: 16 Nov 2010 at 11:29am |
 That is great news Ilaria give Mark all our best wishes
Rita xx
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To receive a smile give one away
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Karen
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Joined: 21 Oct 2010 Location: Essex Points: 558 |
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Posted: 16 Nov 2010 at 12:40pm |
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Hi Illaria
That is such good news to hear. Glad you are feeling better too. xx 
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jet
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Joined: 21 Oct 2010 Location: Reading Points: 349 |
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Posted: 16 Nov 2010 at 2:01pm |
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Brilliant news, hope he continues to improve, thinking of you both xxx
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Had Lupus for at least 27 years diagnosed with secondary PH in 2006
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lisa .x.
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Joined: 25 Oct 2010 Location: manchester Points: 49 |
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Posted: 16 Nov 2010 at 3:38pm |
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Hi Illaria hunn ,
well that's wonderful news .x. Positive mind and thoughts now hunn , and b-4 you know he'll be home with "" Illaria pass me this"", and a "" Illaria pass me that ""  , you wont know if your comming or going ay hunn , haha youll wish he was back in that hospital bed  . Be strong hunn .x. lisa .x.
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lisa .x.
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Ilaria
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Joined: 15 Nov 2010 Location: London Points: 27 |
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Posted: 16 Nov 2010 at 11:07pm |
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Lisa, your message made me laugh...and it has already started today..."darling, can you pass me some water please.." and I ended up giving him a foot-massage....but i think after such an experience I cant take anything for granted and I am really appreciating being alive. Much love to everyone, xxx
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Trust the process, don't push the river
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lisa .x.
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Joined: 25 Oct 2010 Location: manchester Points: 49 |
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Posted: 16 Nov 2010 at 11:10pm |
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Hi Illaria hunn
, good im soooo glad i made you laugh , and yeah its true miracles CAN and DO happen .x. luv and hugs .x lisa .x. |
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lisa .x.
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kadymd
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Joined: 21 Oct 2010 Location: Hampshire Points: 131 |
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Posted: 17 Nov 2010 at 5:08pm |
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Hi Illaria
So pleased to hear that Mark is now on Mallard. He will get stronger every day but bear with it having had the PTE i know that recovery can be slow and frustrating but it is worth it so hang on in there. Won't be long before he is home and slowly progressing but it does take a lot of time
take care Kady
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it takes more muscles to frown than it does to smile so keep smiling
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Kathryn
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Joined: 26 Oct 2010 Location: UK Points: 145 |
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Posted: 17 Nov 2010 at 8:59pm |
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Ilaria, hope Mark keeps improving, thinking of you both, Kathrynx
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Nutty68
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Joined: 01 Nov 2010 Location: Derby Points: 22 |
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Posted: 18 Nov 2010 at 1:09pm |
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Hi All
Just reading all the posts again which some accounts from carers sound's close to home. and it puts a smile on my face with all the kind works people have put! Its just a shame we can not take all the kind words and best wishes and put it on prescription and take 3 times Daily. |
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Melvyn. Husband of Naomi (Charm) who has (CTEPH) with residual disease post Thromboendarterectomy.
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Ilaria
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Joined: 15 Nov 2010 Location: London Points: 27 |
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Posted: 20 Nov 2010 at 11:09am |
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Hi Mel, so glad reading the posts helped you to get a smile on your face!
One thing has helped me lately was when I was reading about "how to develop sense of humour": it said to ask oneself "what's funny in this situation?" even when it's the worst possible situation...so, that is really hard but I tried it while Mark was in Critical Care and I managed to laugh at myself...
I wish you can find the funny side of life sometimes and also the time to look after yourself and replenish your energies...that in turn will make your wife happy and give her more energy.
Mark will be discharged today and as much as I am looking forward to it I also know that frustrating times are coming...nevertheless I am so so grateful that he is still alive...
Thank you all again and best of luck to everyone, xxx
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Trust the process, don't push the river
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kadymd
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Joined: 21 Oct 2010 Location: Hampshire Points: 131 |
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Posted: 20 Nov 2010 at 4:05pm |
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Hi Ilaria
I am so pleased that Mark is well on the mend and being discharged. He will feel so much better at home even if all he can do is sit and rest. that is all i did when i first came home, good luck and take care
kady
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it takes more muscles to frown than it does to smile so keep smiling
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jet
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Joined: 21 Oct 2010 Location: Reading Points: 349 |
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Posted: 20 Nov 2010 at 8:41pm |
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Great News Llaria. You take care of yourself too and make sure you have some 'YOU' time xxx
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Had Lupus for at least 27 years diagnosed with secondary PH in 2006
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Karen
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Joined: 21 Oct 2010 Location: Essex Points: 558 |
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Posted: 20 Nov 2010 at 10:19pm |
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Great news too hear your partner coming home from hospital. Take care and hope all goes well. Karen
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Annie**
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Joined: 08 Nov 2010 Location: bucks uk Points: 317 |
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Posted: 28 Apr 2011 at 8:45pm |
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I think that it is wonderful that you have opened up here. More people should open up as to how they are feeling, it certainly does help. I have IPAH and worry about the effect of my two daughters because they dont say anything to me about how they feel.
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Thank you so much everyone, every day is a surprise and I feel grateful and thankful to nature for what feels like a miracle.