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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • Debbie
    replied
    Shirley,

    I am pulling for you, also. I hope you can start to feel better soon.

    Debbie

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  • mtlieb
    replied
    Shirley,

    I'm sorry to hear that you are feeling so bad right now. I wish i had some little pearl of wisdom to bestow upon you... but alas i do not. I can only hope that you get the medical care you deserve, get on that transplant list, and get the help you need to get on with your life and enjoy being with those grandkids of yours. My thoughts and prayers are with you as always. Try to keep your hopes high. You have much to look forward to.

    Jim

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  • Pam Alexson
    replied
    Hi Shirley,
    No My nail beds do not get blue , when I wake up. I have the Bi- Pap machine on and my mask is very secure. Plenty of forced air is getting to my lungs. In your case it certainly sounds like you are a bit O2 deprived when that happens. Maybe it would be wise to get a more secure facial apparatus; mask or head harness to go with it to ensure you do not have it slipping off during your sleep.

    I am more apt to get the blue finger tips when it is time for me to lie down and get my mask on for a little bit of revival. It works, everything starts functioning better , then I am am wide awake. This revival is fine during the day but awfull at night!!!

    Pam

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  • shirleymahoney
    replied
    Pam I get the same thing lips go numb and my fingers and my feet i will have actual pain in my neck my glands get very tight so i guess it is HCM huh

    Oh and i have a question when you first wake up in the morning are any of your nail beds like a tint of blue my thumbs and index fingers sometimes are just thought i would ask because my hubby noticed it this morning and i said they do that sometimes, my Oxygen came off lastnight or i took it off in my sleep


    have a good weekend ok
    Shirley

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  • shirleymahoney
    replied
    Tigger

    My grandson (9) knows to go get NANA Betty the neighborhood Grandma but first call 911

    Shirley

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  • Pam Alexson
    replied
    Just wanted to ask , along with the aboved stated symptoms do you also get prickling stabbing sensations around your lips on your cheeks and on your foreheads, all the while your head is getting fuzzy and your neck veins tight?

    Thought I would ask as this happens to me while I am breathing like a locomotive doing various household chores. It dissipates if I dessist from the activity and the sweating and breathing get gradually better by 20 minutes time.

    Thanks,

    Pam

    Leave a comment:


  • Tigger1
    replied
    Shirley,

    Sorry to hear your feeling so bad, but remember to try and keep that PMA (positive mental attitude). At least stay as positive as you can.

    Do you have a back-up plan if something were to happen while your watching the kids. Do they know what to do, call a neighbor or call 911.

    You're always in my prayers. Stay positive...


    Tigger1

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  • Abbygirl2
    replied
    I was about to post about the same problem. Today I overdid it. And while I should be reassuring myself I am frustrated because I didn't really work that hard. I cleaned out a few cupboards today. NO heavy lifting or bending over and STILL I got progressively worse and even shaky. I fed the kids then went to bed. I just woke up a while ago(its now 4am) and I still feel really miserable. Alot of Arrhythmias.
    Everyone keeps telling me(Dr's included) that if I just got some excercise I would feel better. So I am in a constant battle between pushing myself and laying in bed all day(which is what I really feel like doing).
    Sorry to vent on your post. I hope you are feeling better, all of you.
    Take care
    Pam

    Leave a comment:


  • Lisa Inman
    replied
    Shirley (Beverly and Eileen, too),

    Just a note to say how very frustrating and upsetting that must be and to send some best wishes and support your way. You are always sharing your good wishes with everyone else. Take care of yourselves,
    Lisa I.

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  • Eileen2345
    replied
    Hi Shirley,

    I also get a headache when I push myself -- ugh, those headaches are awful.

    I get worn out everyday. Many nights I get sick to my stomach because I am so tired. And I need alot of sleep, at least 9 hours or I am in pain.

    I push myself all the time, I have to, there is no one else to do it. If I do not keep everything picked up, it will get cluttered and then it is too much for me to do. My kids help, but they are still very young (ages 9 and 6) so they can only do so much.

    Taking care of grandchildren can wear anyone out. I know how you feel too, I am always a little anxious when I have to go to the store with my kids. I worry about an attack while they are with me. I almost blacked out at Walmart once, that was scary.

    Hugs,
    Eileen

    Leave a comment:


  • shirleymahoney
    replied
    Beverly

    I'm glad I'm not the only one here that gets that bad, I really pushed myself to fix dinner for the family by the time I was done i couldn't eat and now i have a headache which happens when I push myself like that, but my daughter cleaned the kitchen for me

    I couldn't do the kids I have my 2 grandkids for about an hour and a half in the afternoon and it wears me out and they are 9 and 4 and you have 4 I couldn't do it, you know watching my grandkids scares me because I worry about having a Sudden death episode with them here and them freaking out on me

    Well i hope you are doing ok and if you need anything from me just ask

    Shirley

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  • Beverly
    replied
    Oh how I know how you feel. I have 4 little ones and a husband that wants more kids. Some days it's a chore just to get up but I make myself do because I know that my family gains thier strength by seeing me be strong. Make sure you are documenting all of your symptoms to tell the transplant team. But know that you have to keep your strength up even when you feel like there is none left.

    Beverly

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  • shirleymahoney
    started a topic Worn out

    Worn out

    Ok I went to the drug store to get my advil and a few other things was gone 25 minutes total and the store is about a mile from me, my sister drove and now my hair is soaking wet and i'm worn out i feel weak and i have really done nothing today other then get up and take my meds and lay back down so my lasix would work better, it just makes me so angry that 2 years ago i was doing 10 times more then i'm doing now, sometimes just getting out of bed is a chore

    Shirley

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