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purple_ness1
purple_ness1
Barely Heart
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  • alcohol and pills ?

    Hey
    hows it going

    does anyone find not drinking anymore hard ?
    my transplant co told me im not allowed to drink any alcohol at all
    wish im fine with and i understand but its when i go out partying with my friends its like i lose scene and it goes out the window
    i start of not drinking but by the end of the night i end up drinking and way to much in that moment i dont realy care but the next morning i alway think dam i shouldent of done that

    does anyone know why we cant drink ? wat does it do 2 me ?
    and how do you guys not drink ? mayb its not the same been older i dont know
    be4 my transplant when i did drink i alway felt crap and would make my heart go funny but now it feels normal even thou i know its "bad" i dont feel any different so i think that makes it harder to not drink

    and the other thing iv having troble with is taking my pill , i know there realy important and thats while im geting so much rejection
    be4 transplant when i didnt take my pills my body would tell me cos i would feel crap but now i feel normal if i dont take then so im alway forget them or going out and not having them with me

    any idea on how i can remeber my pills ?

    Margi
    Margi*
    http://margi-inskeep.blogspot.com
    Forever Young

    I was diagnosedwith HCM at 6.
    Went into Atrial fibrillation so had a ICD put in at 16
    Went into Heart failure at 17
    Got a heart transplant at 21(2009)

  • #2
    Re: alcohol and pills ?

    Margi - You've been through so much and now you're really starting to feel better. It's tough to not be able to do everything you want to do, especially when you don't have the symptoms stopping you.

    In time, you will be able to do what you know you should, but you will really have to talk yourself into it. In the meantime, maybe thinking about the gift you have been given by such a generous family may help you to honor, cherish, and care for this gift. Remember that you have the opportunity and responsibility to care for and protect this new heart as a tribute and memory to the one who gave so generously.

    I believe in you and from your post, I know you want to do it. We're all here to support you through this next tough journey, just as the previous one.

    Linda

    Comment


    • #3
      Re: alcohol and pills ?

      Margi - I think that you should carry around extras of all your pills in your purse and then, you should set alarms on your phone when it is time to take the pills.

      The way that I remember to take my pills is to put them in a container with the day and time and fill it at the beginning of the week and if all of the slots are empty, I know I remembered to take them. If they are not, then I forgot. If you take the pills when away from home and used the purse stash instead, then move the dose you would have taken at home in the week's pills to the slot for the previous day. Then you won't be confused about whether you took it or not.

      As for the drinking and partying, if you want to hang with your friends, you will have to resolve that if you want to live, you will have to not drink. Drink club soda or coke in a club, and don't give in even a little.

      I grew up in a city where everyone started going to bars and partying before we could drive, like at age 13. I would go to the bars with my friends, but I never drank. I still had fun, in fact, maybe even more fun than they did because I was in control of my faculties. I went to hear music and be with everyone, but you don't have to drink or do drugs to be part of the crowd. I am here to tell you that it is quite possible. And I didn't even know I had a heart problem at the time...I just didn't like to lose control. You have alot to live for and you were given a gift. Don't waste it.
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

      Comment


      • #4
        Re: alcohol and pills ?

        Margi, as Linda says remember the gift you have been given and that you don't want to ruin your chance at a new life. Alcohol can have a reaction with your immune suppressants making them not as efficient as they should be. Which this will in turn lead to rejection. Maybe not today but within a short time if you keep up the drinking. As Cyn says do the club soda, non alcoholic beer, soda, just skip the alcohol. I set an alarm on my phone to remind me of pills and I also carry a days supply in my purse. Never go out of town without carrrying a 2 week supply with you. These pills keep us alive and that is what you have to focus on. Pill taking will become 2nd nature as you get used to the new regiment. Look at them as a lifesaver without pills we wont make it. It is hard to accept all of this but I think you are strong and can do it. Get a friend to help you out here to be a support person for you. I am here for you so let me know if you need anything.
        Midge

        Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
        ICD&Pacemaker 1996
        Heart transplant March 19, 2004 @ Mayo Rochester
        Mom of Kaye.

        Comment


        • #5
          Re: alcohol and pills ?

          Margi - Last year I had the honor to have a myectomy and 2 months later find my 23 year old son passed out in front of my house at 3 in the morning bleeding from the mouth and literally lying in the gutter in his own urine. Couldn't lift him, called the paramedic to transport him to the hospital where he was treated for alcohol poisoning. He spent 3 days in ICU in restraints and the next 30 in detox/rehab.
          It was apparent to him that his friends (i use that term loosely) didn't care enough for him to see that he made it safely inside our home rather than out in 40 degree weather. I shudder to think that these friends may have driven him home in the same condition.
          Today he has some new friends and some do drink, but he's noticed that these friends care more about him and his sobriety, then having another drinking buddy. You may wish to re-evaluate your friends if they can't support you this way.
          You've gone through a tremendous ordeal that none of them can really understand but your sobriety is not their responsibility. It is so vital for you to follow doctor's orders now.
          Get in a routine for your pills, set alarms on your phone, carry them with you at all times. If you go out with your friends, try non-alcohol beer or soft drinks. Learn to enjoy having a clear mind.
          Marc
          Diagnosed @ 48
          Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
          Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
          AICD - Valentines Day '08, Spark Plug replaced 11/14
          After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
          Quietly going insane . . .

          Comment


          • #6
            Re: alcohol and pills ?

            Margi,

            What are you doing honey?

            Marc made an excellent point, these are not your friends if they drink and let you drink with them after knowing all you have been through. If you became ill again, these friends will be out partying, not sitting by your bedside.

            Please do not throw your new life away on this. You have so much to live for. These "fun" moments of drinking and partying are short and will make your life short too if you do not stop.

            In life we have to make a "New Normal."
            Your new normal should be -- have better friends and enjoy life without alcohol.

            I'm sorry to be so direct, but honey, this is serious stuff you are doing.

            Take care, please.
            49 yrs. old
            Diagnosed at 31.
            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
            My brother passed away suddenly at 34 yrs old from HCM.
            2 teenage children, ages 17 and 15.

            Comment


            • #7
              Re: alcohol and pills ?

              Hi Margi,

              I don't have too much to add. I'll just say that I understand that drinking can be enjoyable, and it's hard not to take part when you're with people who're drinking. It's also understandable that you'd like to feel like you have your normal life back -- and forget all this unpleasant heart stuff! Who wouldn't?

              Problem is, it doesn't work that way. I can't have my normal life back, and you really can't. When we pretend to ourselves that we do, it's called denial. It doesn't get us anywhere -- except to land us with more health problems.

              I don't mean to dump a lot of psycho-babble on you. It just seems to me that it might be important to take a hard look at what's going on.

              You're tough enough to have gone through a lot of terrible health and then a transplant. You need to be tough for this too. The others have made some suggestions about how to cope with the drinking issue. Should you go to the parties and not drink? Stop going to the parties? I don't know what the best strategy is for you -- but you do need a strategy here.

              As for taking your pills, part of that's just mechanical: the suggestions that the others made are good ones (set alarms on your phone, use some of those containers with days/times labeled on them, etc). But there might be another thing too: is this part of denying that there's a problem that you're going to have to cope with?

              Nobody wants to deal with serious medical issues all their life, take the kinds of drugs you need to take, or just, well, be the person at the party who can't do the fun thing everyone else is doing. Unfortunately, there's not really a way out of this; if you want to keep your new heart, you'll have to find ways to handle all this.

              Gordon
              Myectomy on Feb. 5, 2007.

              Comment


              • #8
                Re: alcohol and pills ?

                Margi,

                You no doubt feel better than you have in years, so it is natural to want to keep up with everybody else. However, you still have to deal with a heart with which you were not borne. It is a foreign object that your body's natural immune system wants to reject. That rejection is limited by the anti-rejection drugs. However, the anti-rejection drugs also stop your body's defenses against diseases, particularly unusual infections to which you have never been exposed. So your doctors are carefully balancing the levels of anti-rejection drugs to stop rejection but still allow some immunity to protect you from disease. This careful balancing is why you are going in for blood draws to check the drug levels and biopsies to check for rejection. This balancing act depends on you taking the drugs predictably.

                To answer you question about what's wrong with alcohol, now that it doesn't make you feel crappy...Alcohol can effect the uptake of the drugs, so the levels in your blood may not correspond to what you are taking. In the long-term, the anti-rejection drugs are very hard on your liver and kidneys. Early on (twenty years ago), many transplant patients did not make it because their livers or kidneys gave out after a few years. The drugs are better now, and the doses are more tightly controlled (assuming people take the drugs regularly), but you are still being exposed to liver and kidney toxins. The added stress on the liver from alcohol could put you in jeopardy of liver failure. They are not going to transplant a liver if you've killed it with alcohol. A drink or two with dinner once or twice a week probably doesn't make a difference, but that's not they type of drinking you're talking about that leads to forgetting to take the meds, right?

                Sorry to sound so preachy, but this is serious stuff, like life or death. Take care.

                On a brighter note, it is really exciting to hear how great you feel and how you are no longer limited by heart disease. That is terrific news.

                Bob

                Comment


                • #9
                  Re: alcohol and pills ?

                  Here comes the Meanie ! (aka a Mom)

                  Margi, knock it off , girl.

                  I miss partying , too. At a Halloween party Sat. night, I ordered a strawberry daquari without the booze just so I didnt have to hear one more person ask me why I wasnt drinking.

                  I get it. We all get it. I hate that you are so young and you have to deal with this.
                  You got through a heart transplant !! You'll find the strength to get through this.
                  Straighten up with your Meds before we ground you !! ha
                  peace
                  mariab

                  Comment


                  • #10
                    Re: alcohol and pills ?

                    Margi,
                    The others have already given you great advice. I can't think of anything they've left out. In a way, HCM has made you grow up too fast, and being a transplant recipient is making you grow up even faster. I hope that you are able to find caring, mature friends, in the true sense of the word, who understand (or who can be educated and will understand) and are then able to support and encourage you to make good choices for your own health. Your heart really is a gift that needs to be treated as such. You probably don't need to hear that there are people who die each year waiting for a heart to be donated. If nothing else but out of respect for their loved ones and the loved ones who donated your new heart, please take the responsibility to take care of yourself -- even if that means finding new interests and new friends who do not drink alcohol at all. -- Period. Even though some of the advice given by the members on this board may be difficult to hear, I hope you are able to feel the love and support that is being offered to you. We all want what's best for you.
                    Theresa
                    Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

                    Comment


                    • #11
                      Re: alcohol and pills ?

                      Margi,

                      I know that everyone has said things better than I could have said. I want you to know that I'm glad you presented your concerns here. We are a safe place and we are also family. We all want the best for you and obviously you do too, or you would have never made the post and revealed what your current issues are. Thanks for sharing.

                      Please know that we love you, support you and will help in any way we can.
                      Linda
                      Onward and Upward !

                      Diagnosed 4/07 HCM with fixed & dynamic obstruction
                      Myectomy with resected cordonae tendonae 4/08 CCF
                      ICD 10/08

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