This topic contains 18 replies, has 5 voices, and was last updated by  Brittany Foster 3 weeks, 5 days ago.

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  • #20055
     Colleen Steele 
    Keymaster

    My son had a Central Line in which he received IV Flolan for 5 years. In order to avoid infection the central line needed to remain dry and obviously the Flolan pump could not get wet or else risk malfunction.

    He always remained compliant but there was one time we allowed him some risky wiggle room. We visited friends at their lake home and my son was intrigued by people riding jet skis. Our friend asked if he could give my son a short ride on his.

    My son was of course begging and persuaded me by showing how he was going to carefully protect the medical equipment and his chest with extra clothing and a life jacket. My friend promised to keep the speed down and the ride short.

    I agreed but couldn’t watch. In no time they returned to the dock safe and sound. My son was wearing the biggest smile I had seen on him in a long time. I have a picture of him from that day and it’s one of complete joy.

    It was a risk taken that we never told his doctor about but honestly, if I could go back in time, I would still allow him to get on that jet ski.

    What is the biggest, but most well worth it, risk you have taken with your PH?

  • #20064
     Carol Volckmann 
    Participant

    `Hi Colleen, I think you and your don are very brave- sometimes taking an action that will really please you is worth the risk. When you weigh the risk and look at worse case – site gets wet and you will need to go to the emergency room.
    The best water proofing system by far that is completely water proof, do not need to change it all the time, dose not tear up your skin or irritate it is Aqua Cel Foam. Comes in many sizes, I use 3.2 by 3.2″ and leave it on 24/7 in and out of the shower. As soon as I see it crinkle a little, I change it. The specialty pharm does carry it.
    All the very best to you and your so !
    Carol

    • #20111
       Colleen Steele 
      Keymaster

      Thanks Carol! I never heard of the foam. He used aqua patches for showering. We also invested in a dry suit so he could swim at heart camp. Those are expensive but well worth the cost to let a child have summer fun.

  • #20065
     V.R. Peterson 
    Participant

    With my son, the biggest risk he took was easily the last time he was hospitalized with pneumonia. Two days before, he was still in the hospital, and he told the doctors they could either release him or he was walking out, as he had a wedding to attend. The doctor, looking at him is disbelief, asked him just whose wedding was so important that he couldn’t miss it. When he told the doctor that it was his own wedding, the doctor relented and released him. However, I truly believe that if his fiancee hadn’t been a nurse, we would have been attending a hospital wedding.

    • #20075
       Brittany Foster 
      Keymaster

      WOW! I would definitely do the same thing if it were my wedding that I felt like I was going to miss. Those are those once in a lifetimes opportunities and it probably meant a lot to your son to attend his wedding in the way he wanted to. I know it probably wasn’t ideal to leave the hospital, but I can definitely see where his mind was and why he made the decision that he did. I am sure it was a great wedding too!

      • #20082
         V.R. Peterson 
        Participant

        It was a wonderful wedding. He was exhausted by time the reception was over, but he’s glad it wasn’t at the hospital. He said it was *so* worth it.

    • #20112
       Colleen Steele 
      Keymaster

      @mamabear007 that sounds like something out of a movie. I can just imagine the doctor’s reaction! My gosh, of course it was worth it! I’m so happy for your son and for you. It must warm your heart and ease some of your worries to see him so happy.

      • #20120
         V.R. Peterson 
        Participant

        It really does warm my heart that he found someone to share his life with. I was beginning to wonder if it would ever happen. It didn’t until his late 20s, but it was worth the wait to see him so happy.

  • #20074
     Brittany Foster 
    Keymaster

    I would have to say a risk that I took is going on vacations. I think that every vacation is tough physically for me but in the end it is absolutely worth every second of the time I spend over-exerting myself and doing more than I know I can handle. I rarely allow myself to just let go and have fun and relax and when I am on vacations I feel like I can do that without judgement. I also oddly enough take care of my health MORE when I am on vacations and wear my oxygen almost all the time. On the last cruise I was on I wore my oxygen around the ship and walking and it really made a difference in my energy levels and I felt like I was somewhat able to keep up with everyone else I was with. Just going on this vacation and being away from hospitals, doctors, etc was a risk especially because I went during a time when I was frequently in and out of the hospital and needing care, but it definitely was worth it and I would 100% do it all over again.

    • #20113
       Colleen Steele 
      Keymaster

      Brittany, I think, with in reason, a risk every now and then is good for the soul. With all the effort it takes to stay well there should be special moments to enjoy the life you fight so hard for.

  • #20076
     Brittany Foster 
    Keymaster

    Colleen,
    What a fun experience and I’m sure it is one that your son will never forget and you will never forget how it made him feel too! That’s awesome that he was able to do something that he really wanted to do. I’m sure he had fears and worries but it feels good to even just put those to the side for a little bit, even if it’s just a short amount of time. That feeling of “normal” even if it’s short lived is one of the greatest and most freeing feelings. I always wanted to go sky diving. Recently I saw a video of a girl I follow on social media sky diving and she also uses oxygen. She didn’t use the oxygen during the dive but it seemed like it was totally worth it!

  • #20084
     Shannon 
    Participant

    I think sometimes we have to “risk” it every now and again just to feel alive. At least for me I do. I have cut a lot of my old active lifestyle out but I still love kayaking. I normally stick to lakes and I never go alone. I also always take my 13 year old Chihuahua. She loves it and wears a life jacket. Well a few weeks ago we went to a different location called Boiling Springs. It was a beautiful day and the water was fast moving!I got ahead of everyone else, and I couldn’t slow down. I went around a fast corner and a tree was down. I hit it head on and my poor old dog flipped under the kayak and I took my oxygen off and dove in after her. I did get her back! But I was really out of breath and the water had pushed me way down. Everyone was upset and my daughter was crying. But I just held my dog up in he air and was like yesssssss I saved her! And then I passed out. Lol I will always remember that day! But I won’t ever go in fast unsafe water again. I need to stick to calm water.I actually haven’t been kayaking since. So sometimes I have to risk it even though I guess I shouldn’t! Lol

    • #20098
       Brittany Foster 
      Keymaster

      Shannon,
      I can totally see why in this situation you took the risk. You were protecting your dog and for some that is the same as doing whatever it takes to protect their child. Over this past summer my nephew broke his femur while riding a bike . I was only a month post op from open heart surgery and as soon as I heard that he had fallen down the street and couldn’t get up I lost focus of absolutely everything that had to do with my own health and it solely became about him. I sprinted without my oxygen like I have never sprinted before in my life and then proceeded to spring back up a hill to get the things necessary to take him to the hospital. It’s true that those flight or fight responses just take over the body and sometimes that adrenaline cannot be tamed.

    • #20114
       Colleen Steele 
      Keymaster

      Geez Shannon, I was holding my breath in anticipation reading this! Wow, that’s an intense experience and I’m glad both you and your dog survived it…and that now you have this great story to tell. We often mention on the forums about moments that aren’t funny when they are happening but you can’t help but laugh at later. “….and then I passed out,” I can just picture it. Your poor daughter though. What does she think of this memory now?

      • #20121
         Shannon 
        Participant

        Colleen , yeah I still feel bad about that day for my daughter. I really scared her. And I should have just stayed home that day. She kept saying the water would be to rough but I wanted to go. I can laugh about the day but she still doesn’t and she hasn’t been kayaking with me again since that day. She also said how I shouldn’t have risked my life for my dog but that’s my dog! Lol and my dog would save me if she had to. The experience made me rethink the physical things I do. And where I go.

  • #20103
     Shannon 
    Participant

    Brittany , yes it definitely was a flight or fight type of moment! I seem to have a lot of those. And then afterwards my body is in shock and I have to stay in bed for days just to recover. Or sometimes I just say I need to stay in bed so everyone leaves me alone! Lol I guess the last time I took a big risk was when I rode a ride at the amusement park. It was so fun! And I felt ok but my glasses fell off and broke. I can’t seem to catch a break! Lol

    • #20105
       Brittany Foster 
      Keymaster

      That flight or fight really does kick in and then it’s all adrenaline after that which the body can only run on for so long until it stops and then it’s like the body hits a wall and it’s hard to recover from that.

      I haven’t been on a theme park ride in forever. I used to be totally okay with them and loved the thrill of it. Now I go on a go kart ride or bumper boats and I feel like my head spins for hours after ! I’d love to be able to do rides again though one day. My nephew is getting old enough for Disney but I probably won’t even be able to handle the Small World kid ride LOL

  • #20109
     Shannon 
    Participant

    Brittany, Awwww! Lol I sure hope one day you can go with your Nephew and enjoy a few small rides. He would probably love that! And that Small World ride stays singing in your head all day! So you aren’t missing much on that one. Maybe try the Tea cups! Lol or skip rides all together and eat a Dole Whip ice cream cone. They are the best.

    • #20148
       Brittany Foster 
      Keymaster

      Definitely the best advice I’ve had in a long time! Any excuse to eat some ice cream, especially dole whip soft serve is my kind of party!!!! Just the mention of spinning rides sends my vertigo into overdrive! My dad is the same way too ever since his stroke. He tried to go on them with us when we were younger and spent the rest of the vacation inside. I’ll never forget that, I felt so bad for him!

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