Sep 17
UglyKid
UglyKid , Posted on SUPPORT NETWORK Blog

A Blog is not the answer we need more

A blog is a stranger talking to a complete stranger and I understand people are looking for help but reading words from people across the U.S. I feel is not the answer. I posted this letter to every place I felt I could and I will continue to do so until we can get something started: To who is may concern,
My name is Andy Dumas and I just woke up and had a crazy dream. First I have a pacemaker and have had one for 5 years, I have to admit I caused my own health problems I am an alcoholic that has not had a drink or a drug in 27 years as of 11/15/16. My life was a fast lane drinking driving hanging with the wrong crowd but all of the has changed and people as I’m sure you know tend to leave and stay away from you when you quit your addictions. The reason I am writing is because my life has changed so much with this pacemaker I find it very hard to find friends male or female who understand there are limitations to what you can and can’t do. I don’t want my life to stop because of this but I have to admit I am lonely and I basically hate my pacemaker as when I played sports or anything I did it with all I had now I can’t. I had an idea perhaps it is crazy but I dreamed there was an organization such as AA and such for pacemakers. Why can’t we start a group where we can meet each other and discuss how you feel about your situation as people who don’t have a pacemaker don’t understand how you feel, and with a group meeting starting small and getting to be something like AA or SA or any group like that? This would be a great way to find out how people really feel discuss their lives and perhaps meet a friend or a member of the opposite sex with the same condition , someone who understands what you can do and what you can’t and what you are afraid of and what you feel your limitations are. Personally I feel this would be great for people whose life has changed and find themselves shutting down and eventually just staying home with no or few friends and a fear of doing things because you feel you have limitations and perhaps they don’t exist. I would love to meet people that are in the same situation as myself to talk get their stories have a purpose in life as right now I feel I have none, yes I know you can talk to your doctor but that really doesn’t help just as in the other organizations I mentioned which seem to work very well and I know they have help people turn their life around. I have a small home and I would welcome people come to my home for a meeting or some type of gathering just to help each other as I feel I am not the only one who’s life has been effected the same way mine is. I would love to be a part of some type of support group and perhaps call it People with Pacemakers a place to meet, greet and share stories and make new friends. I hope you don’t take this as a joke as I am very serious I feel it would benefit 100’s if not 1,000’s of people to start their lives back to normal with heart problems in this case Pacemakers and how they affect you and your lives. Sorry about the grammar but I hope you can help me and thousands of others just like me as I would love to talk to others living my life in the same manner I see a shrink and have for several years but they can only encourage you as they don’t know what it is like to have this device changing your life and not knowing what you can do to change it. I look forward to hearing from you at ardklk1@yahoo.com once again my name is Andy Dumas and I really hope you can find your way to help us and people like us to adapt to a normal life and work as a force to help each other. Thank you for your time I truly hope we can start something some type of organization so we can work together and put an end to these lonely lives a lot of us are leading and feel like they are going nowhere and getting nowhere, any help would be greatly appreciated. Regards, Andy Dumas
  • Evil Lab Monkey
    Evil Lab Monkey,
    I agree with your post.....though we probably live hundreds of miles apart, and I dont share the same story you have (2 strokes on labor day weekend in 2014), II understand the loneliness. I have panic attacks, high anxiety and depression so going to actual support groups where several people meet is tough on me. I am however a smart cookie, and very experienced and I have a good ear. I do wish there was an instant chat on this board so we can talk more in a private manner (there is messaging but it is not instant) but I am willing to go back and forth with you through the existing message system. Just let me know Andy. My name is Vince.
  • ModeratorJeff
    ModeratorJeff ,
    Great ideas Andy and Evil Lab Monkey. I use the social function of this site under profile and then sending messages a lot. While it's not a live chat it could definitely be used to create and organize a chat experience if interested. Technologies such as Slack, Google Hangouts or any other form of social messaging could be leveraged to set something up as the mechanism. Then it would just take a measure of putting together the group along with the word of mouth and scheduling to put it together. Honestly, I would have liked to have had something like this after my own heart attack. I'm sure it would be an invaluable asset to many many many of us out there dealing with heart disease. Private message me here if you want help to try to organize something.
  • Begga
    Begga,
    I also agree with you, Andy. My open heart surgery was quite recent. My brother and his wife came to stay with me for these early weeks of recovery.. The best thing about their stay is that I'm not alone in my apartment when I close my eyes to sleep. I spent only one night here alone and my anxiety & panic went through the roof. They'll be staying here for another week and then I'm on my own. Not looking forward to be alone all the time again. I live in a 55+ community so I'm sure there are of us here with all kinds of health issues. I'm wondering if a support health group here would be something helpful. My life hasn't been the same since I had lung cancer and with all the heart issues after that, my quality of life has definitely changed. I used to be so out going; vibrant and such a fleeting social butterfly. Now and quite often, I feel like I won't wake up in the morning and living with that fear is quite taxing on the human spirit. So yes, let me know what you come up with Andy, and I'll be sure to drop in on the chat.
  • UglyKid
    UglyKid,
    I would love any help we could get to organize some sort of support group, I have gone through other support groups and I feel I have improved my life as in AA I have not had a drink or a drug for 27 years and I feel I owe alot of that to all of the support I got and my own stories I got to share with people who are in the same situation and I don't see why this could not help people with heart ailments just to sit face to face and tell your story and listen to others share their stories and learn how they handled situations and perhaps I could help someone else with the knowledge I have learned but we will never know if we don't organize some kind of self supporting meetings just a place to go and share with others who understand.....
  • UglyKid
    UglyKid,
    Hi Vince, I am hoping the AHA will help us organize something that could and would help 1,000's of people if not more but we need help to get something like this started and I'm at a loss as to how to even begin so I do believe everyone who thinks this idea is something that would help as I do and many others seem to agree please continue to write to the AHA until they realize we want and need help and this would be a great thing for all of us and great for the AHA for helping us start this type of therapy with meeting and groups a place to share and listen and help while you learn
  • AHA Volunteer Moderator Michael C
    AHA Volunteer Moderator Michael C,
    Andy, do you have a local branch of AHA? if you do or there is one nearby maybe check with them and ask if there's is such a support group near you. it won't hurt to ask. mike
  • UglyKid
    UglyKid,
    Hi Jeff, I sent a blog to Katie and asked her if she could help us get started with ideas and such and just like other groups I would try to get this self supporting if that is the only way to go, but if the AHA would support us or help in some way I think we could make this happen. Regards, Andy
  • UglyKid
    UglyKid,
    I'm going to continue to send my original Post to the AHA and ask for help until they take us seriously and I hope they will as they could be the hero's for all of us by helping us organize groups as there are many help groups that have been around for over 50+ years and they have saved many lives created friends shared thoughts and worked together to help each other and I think we could use something like that to enhance our lives. Regards, Andy
  • ActiveLarry
    ActiveLarry,
    A blog type series CAN help. I posted many things I did on WebMD starting in 2008, with URLs for all my sources, except for one theory of my own, that I believe I proved. My recovery has been fruitful and accomplished a lot for me. I am active and healthy. WebMD followed my posts, and in September 2012 profiled me for my amazing recovery. My prognosis had been death in three years in 2006. Start easy on rehab. Eat VERY healthy. My years of research for myself will, I hope, be a book soon. I am trying to recover the draft lost on this site of my story of survival. I will find it, or post an another. My doctor said I would die inspite of anything I might learn or try, my condition was that bad. And it was. Views of my angiogram almost make people cry. But I am here to tell my story, help others.
  • ActiveLarry
    ActiveLarry,
    Andy, Seek out research on pubmed on pacemakers and sports participation. New information may give you more freedom than you have right now. My cardiologist told me to stay under a heart rate of 130, months after I was taking it to 140 and higher. There is way too much research for doctors to keep up with. Find legitimate research, and be your own expert on your particular condition. You need to be your own best advocate. Recall the movie Lorenzo's Oil ? True story of parents solving their child's medical problem, through their own research, theories and medical contacts. I hope you feel better, and can be more active. You might try more mellow, less adrenaline fueled sports.
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