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Rough Week!

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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
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  • Lisa Salberg
    replied
    Re: Rough Week!

    Mary,
    I have said before in many situations if you are concerned over the care you have received you must document it and submit it to the appropriate people. Hospitals want to give good care... if they do not know where the problems are they can not fix them.
    I am sorry to hear that you have had such a rough go of it latley...keep looking up...it may be tough but it is workable
    Lisa

    Leave a comment:


  • Toogoofy317
    replied
    Re: Rough Week!

    More wonderful news! Yesterday when I got up and took a shower I happened to look down at my matching scars AICD (left) medi-port (right). I almost passed out in the shower. the medi-port incision had opened and I could see the port sticking out. So I had to go back in to the surgeon and have it resutured awake this time. I had only had stitches put in while i was under anesthesia so I was freaking out. Thank God he put the sterile field over my head or I would have bolted I think. My shoulder that I sprained it where all of this wonderul stuff is happening and it hurts like the Dickens.

    Oh well, enough of my belly aching. Lisa, I am so sorry to hear about your mouth that is not good. I am thakful that my heart is behaving lately just the rest of me is falling apart now!

    Lisa, I just got a PM from Tommysgirl and I am extremly concerned. I think it needs to be brought to someone's attention on what is going on at UF. I think someone is going to get hurt or worse if this is not brought to someone's attention! As I read her message it was so eeriely familiar that I was shaking. I got lucky I found you first but other's aren't we have to get this out in the open. Anything you can think of I will help do! THIS HAS TO STOP!

    Mary S.

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  • Rich Miller
    replied
    Re: Rough Week!

    Hey Mary glad your doing better . I am going to post this to also let you know you arent all alone with problems .as you know in feb i had trouble with v-tach and v-fib spent 10 days in hosp getting back in rythum.Then in April thought i was having a stroke ,it turned out to be Bells Palsy (its better than a stroke but still not good).and for the last 3 months i have been having some vision problems ,thought i just needed new glasses but it got real bad in 1 eye so i went to dr who sent me to specialist and i have some kind of bleed that is stopping my vision from being clear in left eye,so now i get to go see another specialist to find out what is what I gues we all have some kind of Chronic body failures going on so stay in stride and dont let them get you down
    Rich

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  • DLCC2
    replied
    Re: Rough Week!

    Mary so glad your doing better. I hope your getting some rest now.

    Diana

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  • Lisa Salberg
    replied
    Re: Rough Week!

    I am posting this JUST to make Mary feel a little better..and to basicly say...Hey I am a mess too
    I get to go to an oral surgeon on Monday... to had a biopsy of this nasty wound that I have had in my mouth that will not heal...SINCE MARCH!
    So They took a look and said "wow, thats nasty can I get my camera?" NO joke! Next step was prednisone for a week (that means No sleep for me!) then off to the biopsy next week so that they can see "WHAT" this "thing" is... YUK!

    This is SO nasty...

    I have a list of possible things that it may be from...as simple as a reaction to tooth paste...to Lupus and just about everything in between. I was told one thing for sure about the type of "thing"...
    IT IS RARE.... JUST like me a rare messed up HCM'er with a yuky thing that will not heal for unknown reasons!!!

    Hey Mary did that help

    Later!
    Lisa

    Leave a comment:


  • Toogoofy317
    replied
    Re: Rough Week!

    Midge,

    The port installation is no problem! I was just a freak it rarely happens with the whole antibiotic ordeal. It does make your life a lot easier. Trust me, not getting poked seven times to get an IV started is quite nice. Thinking optimistically that is.

    I am feeling better now though. Thanks everyone!

    Mary S.

    Leave a comment:


  • Midge Rollins
    replied
    Re: Rough Week!

    Mary, I am sorry to hear all of your bad luck. I hope that things turn around for you SOON. I will keep in mind about the port and the meds. I am looking at having my port installed soon. They will give me cardiac meds direct into it until a heart becomes available. Not looking forward to it but know it is next step. I read your notes and feel fortunate. Hang in there kiddo will keep you in my prayers.

    Leave a comment:


  • DLCC2
    replied
    Re: Rough Week!

    This condition is a sleep related illness. Not always but it starts that way. For me and most people I know with it, you just start to go to sleep and your legs started jerking around and they won't relax. Your legs literally are so restless that you must get up and walk around. You think they've finally caught up with the fact that the rest of your body is sleeping and you lay back down and it starts all over again.

    There is a website for the National RLS Foundation, www.rls.org.. which explains it a whole lot better than I can. For years I found relief with a supplement I found at the health store that had Quinine in it. But last year found out that the Quinine is quite detrimental to the heart and can cause severe problems. Needless to say I am no longer on it.

    I hope this answers your question.

    Diana

    Leave a comment:


  • Chuck B
    replied
    Re: Rough Week!

    Diana, What is the restless leg syndrome?

    Leave a comment:


  • Chuck B
    replied
    Re: Rough Week!

    Mary, The same symptoms happened to my wife after taking antibiotics. She was prescribed flagile by our family doc and recovered in a few days. Fortunately, She does not have HCM. In the process, she lost 17 lbs before they finally made a diagnosis.....

    Leave a comment:


  • DLCC2
    replied
    Re: Rough Week!

    Mary, major hugs and sympathy. I have to agree with Lisa's last message. I wish my system would get a contract signed to not only work together but an agreement to support each other when the other goes down instead of jumping on the band wagon. Oh well I guess as long as they all don't jump ship we'll live to see another sunny day.

    I hope as you recover at home and refresh your physical systems that you have something or someone who can refresh you spiritually. If not keep coming here over the weekend and I'm sure we'll all be here for you.

    By the way just so you know I'm not speaking words of encourgement from a life that doesn't know what your talking about. I went to Cleveland and met with Dr. Lever. I went because there was some concern over my med's causing my liver problems to start with. I defintely don't need that because I have Hep. C. Also I have severe asthma and allergies and there was concern over my med's in that area. I also wanted to make sure my Dr's here had me on the right track as far as my HOCM. Well we got all that sorted out for the most part. It was strongly suggested I see a Gastro. person and an Endro. person while I lose my weight. Just what I need more Dr's. Good side I'm still here because of them. Today I got a call from Dr. Lever and it seems I may have sleep apnea on top of everything else. I quit breathing for up to 3.5 seconds when I sleep which with the HOCM is not a good thing. Looks like I'm going to have to go have another Sleeping test. Last one didn't show sleep apnea but I woke up over 600 times during an 8 hr. period because of the restless leg syndrome I have. Boy sometimes I just want to run away from me.

    Anyway what your going thru is much tougher than what I'm dealing with right now but I just want you to know I understand personal health **** and I'm here if you ever want to talk on the phone. I'll pay for the long distance charges.

    Well now that I've written a real LONG letter I'll let you rest.

    Take care,

    Diana

    Leave a comment:


  • Lisa Salberg
    replied
    Re: Rough Week!

    Mary - I can relate...sometimes I am sure that my body is on strike and will just not sign the contract!!!
    "cant we all just get along"

    Lisa

    Leave a comment:


  • Toogoofy317
    replied
    Re: Rough Week!

    Thanks for everyone's care and concern. Once, I can get in more than just clear fluids I will do that! I think being neauseated is one of the worst feelings to the world next to my chest pain. Had them both the other night and just wanted to be put out of my misery. The medicine helped though! At least I am home and that is all that matters!

    Boy though when one system goes haywire the rest seems to follow suit with me at least!

    Thanks again,

    Mary s.

    Leave a comment:


  • Lisa Salberg
    replied
    Re: Rough Week!

    Mary -
    BIG HUGS!!!!!!!!!!!!
    You have had a rough go of it ... when things get this way fro me I think of a sign on the wall of my office... "focus on the Future!" The past is past ...what we are living in will soon be the past and we can not change either... so look to the future..set a plan and do your best...it seems to have worked for you so far... Know we are all here and we do care!
    Be well,
    Lisa

    Leave a comment:


  • mtlieb
    replied
    Re: Rough Week!

    Mary,

    Yes, Larry and Sarah are right, acidophilus and yogurt to help the good little bacterias in your stomach fight off the bad ones. That's why whenever you travel to a foreign country you should always eat lots of yogurt!

    I'm sorry things aren't going better for you, and do hope everything turns around for you real quick!

    Jim

    Leave a comment:

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