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Thread: Heart Involvement

  1. #1
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    Default Heart Involvement

    Looks like Lupus has decided to invite my heart valves to its stinking little party.
    I have been having some tightening in my chest and shortness of breath for a bit now so I went to the cardiologist few days ago to have an echo. I went back today for a cardiolite stress test. He said that the echo showed dilation of a vessel to my heart and that my aorta is leaking. Im not exactly sure what it all means but he said that the tightness I am feeling in my chest is not heart related and that we dont need to do anything right now just monitor it with echos every couple of years.
    I asked them if it is not heart related then is it lung related. They sorta danced around with lots of non-answers. I have not got the results of the cardiolite stress test yet. I see my primary next week.
    What a blow. Ya know when "IT" as Oluwa says just affected my muscles, joints and skin I could handle that. At least I wasnt gonna die from their involvement but my heart? That is MY HEART. I kinda need my heart ya know.
    So I am kinda reeling here today. My heart and possibly my lungs. Is "IT" going to win this war for my life?

    K
    Kasey
    aka SuperNoodle

    I am a Lupie Lethologica Goofy Groupie

    I can do all things through Christ who strengthens me. Phil. 4:13

    Wife to my HubbyMan and Mom to a Multitude! Lovin' my sweet pup Ellie!
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  2. #2
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    Absolutely not, Kasey!! It is not going to win this war.....YOU ARE!!

    You are one tough fighter, Girl....or else you wouldn't still be here. You've been through so much....I don't have to tell you that. IT keeps knocking you down...thinking it's gonna win, but IT has something coming to it. Kasey's mental toughness, her strong desire to be here with her husband and all of her kids...and her strong will to live. Never give up your strong will....even if you feel overwhelmed and just so tired of it all...you hold on to that fighting spirit...cuz that's the thing that Lupus can't beat.

    Yes, your heart is the #1 important organ in YOU, but you're doing all the right things, Kasey. You're paying attention to symptoms and things you know are just not right with your heart and lungs, and you got yourself in to a Cardiologist. Thank goodness they found this and can now monitor it and keep an eye on you. If it was extremely serious, life threatening right now, they would have been right on it, prescribing medications, or looking at ways to fix it. Great advances have been made in recent years in dealing with heart problems, and you have that collective knowledge to help them deal with what comes along with this. Last summer, I watched a close friend of mine go through heart bypass surgery, and I was amazed at how knowledgable they were and how they knew what her problem was and how they were going to fix it. Even though she had a rare condition that was genetic and had caused her heart vessels to reroute themselves to try to adjust to the need for more blood. I was astounded how they took a totally messed up heart, and fixed it to work properly again. It was nothing short of a miracle. And I took care of her for 2 months afterwards and watched how she healed and how well her heart was functioning.

    I share this with you to give you hope....do not think that Lupus is going to take your heart from you...that this illness is going to cause damage that cannot be dealt with or repaired. You need to focus on the fact that they found the problem and they are going to monitor it and take care of you. You need to take one small step at a time. And this is just the first step....seeing a Cardiologist and diagnosis. You'll go on from here and continue to be monitored, educate yourself on how to best take care of yourself...your heart...and you will try to do everything within your power to keep IT from doing any further damage. You know this might not even be from Lupus, it may be genetic or something that you've had all along and didn't realize it. That was the case for my friend.

    I know you're scared, Kasey. We all would be when a doctor mentions problems with our heart, but this sounds like something that can be dealt with. You are going to be ALL RIGHT! You focus on that! And you focus on your strong support system...your husband....your children that LOVE you dearly...and all your friends here at WHL. We are all here for you whenever you need us.

    And, of course, never forget your personal promise from God..."Fear not, for I am with you always...".

    Gentle Hugs for your Heart

    With Love,

    Lori

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    Lori always says it WELL!!!! I too ditto her Kasey!!! YOU WILL PREVAIL!!! You are in my heart and thoughts Kasey
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

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    Morning Kasey....

    How are you feeling this morning? I worried about you last night.

    Sending you gentle HUGS for your Friday...

    Just wanted to let you know you're not alone....

    much Love,

    Lori

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    Lori, you are sweet. Im not doing the greatest. Im dealing with a lot of grief issues about my health and my children. Lots of pain.

    Luv, Kasey
    Kasey
    aka SuperNoodle

    I am a Lupie Lethologica Goofy Groupie

    I can do all things through Christ who strengthens me. Phil. 4:13

    Wife to my HubbyMan and Mom to a Multitude! Lovin' my sweet pup Ellie!
    Come visit our new store, www.hayleystreasures.com

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    hi kasey,

    so sorry to hear about the heart issues. I recently went through this, and continue to deal with recovery from heart procedure. It is extremely frightening when your heart is involved, and rightfully so. Every time my heart acts up, my immune system kicks into high gear, and those little bastards start attacking...thus i go into a flare. I have finally gotten this message accross to the drs. nurse, and she is always there for me to call whenever this occurs....she does everything possible to get my heart back to normal, in an effort to reduce the pain, etc.

    i know it must be frightening for the cardiologist to say "we will watch it", and i wonder if you should persist and expain the complications. My cardiologist does not understand the relationship with lupus, but his nurse has really tried to learn as much as she can, and she is proving to be a real comfort for me.

    seems like they could do something about a valve.

    i am so sorry you are having to deal with this (along with all the children and their attitudes). please try to rest and take care.
    Phyllis

    share a smile today

  7. #7
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    Ahhh, Kasey...I'm so sorry. Sometimes it hurts so damn much to be human. Grief...over lost health....that one digs deep....and the ache is tremendous at times. We ALL go through it, so we totally understand the pain there. And it seems no matter what words people share...it just doesn't seem to cut through the ache it brings to your heart and your mind. I have spent so much time feeling the grief and deep sadness over losing my good health that only those of us with Lupus can experience. I know that everyone that has a chronic illness of any kind feels that grief...but I think with Lupus there's a whole other layer with that grief because of the unpredictability of it...the knowing that you never really know what's coming next. I struggled for years with jealousy and anger towards other people for my lost health...first I'd feel the grief so deeply and then I'd seem to have an underlying anger towards healthy people....it seemed like everyone around me was healthy and strong and doing what they wanted...while my life felt full of sickness and pain. When I was losing my hips, I grieved horribly for losing the use of my legs....watching the muscles all wasting away...and I was so jealous of people with strong legs and thighs, especially runners. It seemed as if the more I slowed down and struggled to even walk, the faster and healthier everyone around me was. I hated it....and I hated them for having what I didn't.

    I wish there were some magic words to say to you...I so want to help. Kasey...my Mom's heart understands your pain...grief over your children. We want to help them so badly, to make their world okay, to help them be happy and healthy....and it hurts so much when that's not the way it's going for them. All I know to say is "I'm very very sorry...for all the struggles that you're having, trying to take care of your kids." You are a wonderful Mom to your children....God knows that...and He knows each of your kids personally and He LOVES them even more than you possibly can. It'll be okay....with God, all things are possible.

    Sending you extra special, Personal, Just For Kasey HUGS to help your aching heart today....

    with Love,

    Lori

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    Default hi

    Kasey,

    You hang in there YOU WILL WIN not 'it' my friend. You have dealt with so much lately....so it shows just how strong you are.You are very dear to us here at WHL you are our friend.We will help you!! We all love you and one day....this will all ease enough for you to relax.Hope your family are all doing ok,coping. You just take one day at a time my friend and no...you are not alone....we are here at a touch of a button.

    lots of love
    Amanda.xxxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

  9. #9
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    To put it blunt "IT" can kiss our behinds! You hang in there my friend! I have to kick "its" butt myself today! Hugs I hope you feel better sweetie! Kathy
    Sorry i'm not home pain! and don't leave message I am not calling u back!




    Lupus,Fibromyalgia,Hypertension, Sjogrens,Raynauds,

    Macular degeneration,Depression,Arthritis


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