This topic contains 16 replies, has 5 voices, and was last updated by  Brittany Foster 3 weeks, 5 days ago.

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  • #19984
     Brittany Foster 
    Keymaster

    I know that every doctor will say that if you are to drink it is important to only drink in moderation. I have talked with my doctors honestly about drinking alcohol to get their feedback. Not going to lie, I enjoy having mixed drinks when I go out to dinner with friends or a night out with my boyfriend. Lately, I have been noticing that when I drink even the slightest amount I feel absolutely awful the next day. I wake up with bad headaches, sometimes vomiting, and it takes me DAYS to recover from that feeling.

    It is to the point where even enjoying the occasional drink here and there isn’t even worth it for the stress I feel in my own body days later. It is hard to just say “no” to having a drink especially because I am in my late 20s and drinking is a big part of social life and night life. I want to have fun but at the same time, I don’t want to put my body under any more stress than it’s already under. I have had to limit myself to just one mixed drink (if that) when I go out and I always make sure to drink extra water with it to avoid that headache in the morning.

    Do you have to limit your intake of alcohol because of your PH? Do you experience bad symptoms after drinking? How do you balance the drinking aspect of your social life while also trying to manage your health?

  • #20008
     Ally 
    Participant

    Yes it has started really affecting me here lately and I enjoy cocktails with dinner one of the few things I could still enjoy so yes I must limit my alcohol consumption too.

    • #20010
       Brittany Foster 
      Keymaster

      I feel like it is hard to just give up drinking all together because it is a big part of social scenes, especially in my late 20s I feel like the majority of people have drinks when they go out to dinner or a night out with friends. I am nowhere near the party girl that I used to be at one point in my life, and I don’t necessarily want to go back to that but wish I could still enjoy at least one drink without feeling like I am paying for it for the rest of the week. I get really bad migraines and dizziness after just drinking a small amount. What are your symptoms like Ally?

  • #20025
     Ally 
    Participant

    I know I really feel for all the younger people dealing with this I was 49. I get extremely short of breath after one drink and I start to swell if I have 3 cocktails I pay for it for 2 days… I am stubborn so I still drink every now and then.. I don’t know where your at Brittany so I will just ask. Are you gonna ever get good enough to live a somewhat normal active life? I have just about lost hope for myself with being put on a transplant list.. I want to do stem cells but I am not financially able to have a great day!

    • #20027
       Brittany Foster 
      Keymaster

      Ally,
      I hope that stem cell therapy can get more funding and that insurance companies and doctors catch onto all the research that is happening with stem cell therapies and treatments. It must be so hard to not have the financial means to do something that has the potential to help so much. I would keep an eye out of clinical trials on things like this and make sure to ask your doctors to keep you in the loop if they hear of any studies that you may qualify for. There’s no harm in asking !

      I am not really sure about where my health is taking me. I honestly just have to take things one day at a time as cliche as they sounds. Lately I have really been struggling with not being able to eat because of a condition I was born with of my aorta that is compressing my esophogus. I had surgery to correct it (it was a major open heart surgery) just a few months ago but the damage was so severe that I now don’t have motility and movement in my esophogus so I am trying to use my feeding tube and can only eat soft and bland foods. It really has put a damper on the things that I once loved doing especially because I have such little amount of energy. That’s my biggest struggle right now, but like I said I just have to remind myself to take things a day at a time.

  • #20031
     Colleen Steele 
    Keymaster

    When my son started high school I brought up drinking with his doctor. This was post transplant. He better not have been drinking when he had PH at the age of 8-14. LOL! Not that I was encouraging drinking in HS either but in case of a moment of peer pressure, I wanted him to know the risks.

    Honestly, I was expecting to hear, “Don’t drink,” followed by a long lecture. That wasn’t the case. His doctor told him to make sure he never drinks too close to taking his meds but other than that, a drink or 2 would be fine, getting drunk would not.

    As it turns out, my son has zero interest in drinking. Personally he feels that he has had so much lack of control over his physical self that he doesn’t want to introduce anything in his body that could make him feel that way unnecessarily.

    I’ve offered him a glass of champagne on New Year’s Eve that he has turned down. It’s a matter of preference. Personally, if I were him I would have a drink every now and then so I’m with you ladies.

    • #20039
       Brittany Foster 
      Keymaster

      Colleen,
      All through high school when my sisters and friends were drinking (illegally) at parties, I ALWAYS stayed away from it. I think it’s because my pediatric cardiologist scared the CRAP out of me around conversations involving alcohol and drugs. Like your son, I also don’t like the feeling of not having control over my body. In college I partied more than I should have and didn’t take as good of care of my health as I do now. I was in that rebellious stage and rebelled against my body. I learned in the long run that this was just hurting ME so I stopped this level of partying and honestly would NEVER be able to handle going back to it. But, I do enjoy having a drink or 2 when going out with my friend (on the rare occasion that I feel like going out and staying out at night). I’ve just been so exhausted lately and my body has been through too much to give it things that it doesn’t need.

  • #20047
     Ally 
    Participant

    Brittany my heart just breaks for you and you have dealt with this your whole life. I hope they can find you some kind of relief and yes I believe stem cell therapy is where the real healing is no more meds that do almost as much damage as they do good! I just hope I make it to see it I started cardiac rehab and they have just about benched me! My O2 won’t get above 90 with 4 liters and hovers at 85 it dropped to 78 once and my BP was 88/52. We are all suffering to a degree but some more than others..

    • #20078
       Brittany Foster 
      Keymaster

      I can relate Ally. I am so sorry that the oxygen isn’t increasing with the use of oxygen at 4 liters as much as they would hope. It is hard to see your body struggling and to feel the physical effects from it. That is a really lower blood pressure and I am sure you feel so tired and worn down even more with a blood pressure that low. Does that low number effect you with making your symptoms worse? Whenever my bottom number is below 60 I become symptomatic. NOT FUN! I can relate to some of what you are going through. You’re not alone in this, as hard as it is.

  • #20062
     V.R. Peterson 
    Participant

    I found out when my son started Warfarin, that alcohol affects the INR. Because it affects the body’s metabolism, it also affects the Vitamin K metabolism. Just something to consider if you’re on Warfarin.

    • #20068
       Brittany Foster 
      Keymaster

      Definitely something that is good to note and look out for if people are taking these medications. I am not on this medication but I believe it is a blood thinner, right? I bet alcohol would have to be consumed in moderation and monitored pretty closely for people that are taking medication for blood thinning since alcohol also thins the blood. It can also give me a lot of swelling, especially the next morning in the hands and feet in particular. I just feel awful after drinking to the point where it doesn’t even feel worth it anymore to have a few drinks.

      • #20081
         V.R. Peterson 
        Participant

        I’m sorry you have such symptoms.

        Yes, alcohol can act as a blood thinner, and my son has to be careful about it.

      • #20096
         Brittany Foster 
        Keymaster

        I never actually gave much thought to that especially to my friends that are on blood thinners. Now I can understand why they don’t drink or why they really have to be conscious of what they Do drink and have. Our health and medication reactions force us to think about these things, but it’s only for the best.

      • #20116
         Colleen Steele 
        Keymaster

        My son isn’t on a blood thinner either but that is an important point that @mamabear007 made. Brittany, personally I relate to the swelling that you mentioned. I have RA and if I have just one or two glasses of wine I experience swelling the next day, especially in my fingers, feet and ankles.

      • #20149
         Brittany Foster 
        Keymaster

        Colleen,
        I know a few people with RA that have to be careful about salt, alcohol, and the temperature changes like when it is hot and humid can cause swelling too. How do you get rid if this swelling if it is RA related? For me, it takes a lot longer because of my heart so I end up having to just pee it out with some diuretics.

  • #20083
     Jen Cueva 
    Participant

    Great topic, Brittany. Year’s ago, I would drink more than I should but I did OK. ” Sober ” by Pink was my soundtrack, lol

    That was not much of an issue besides the ” paying for playing” part. My PH doctor said to drink ” in moderation”, 1-2 drinks. I think I made up back then and had up to 10 drinks over the weekend.

    Then I started Prostacyclines, one group of PH treatments. Those meds with alcohol affect me horribly. I stopped for some time. But, as you mention, I missed a drink occasionally at dinner or out with friends. I don’t like the effects later and into the following day. I had 2 drinks while on vacation recently. One drink the first few nights. I enjoyed the drinks but not the after feeling. Hubby even said, ” no more ” as I wanted to enjoy the trip more.

    It’s strange the difference in how our bodies react to meds and alcohol, etc..

    • #20097
       Brittany Foster 
      Keymaster

      It really is. For me, it’s not so much the medication side effects with alcohol, it’s more of my body just not tolerating it anymore. Also I feel like losing weight will make the alcohol intensify the effects of it too. I just have a headache all day pretty much. So, my thoughts are, ‘ why add to something that is already bad and making me not feel well?’ I have to pick and choose my battles now.

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