This topic contains 21 replies, has 5 voices, and was last updated by  Brittany Foster 2 months, 3 weeks ago.

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  • #18410
     Brittany Foster 
    Keymaster

    This week I had a lot of follow up doctor appointments. I got a new J tube placed that is smaller than the last one that I had and better suited for the curves and narrowing of my intestines. The procedure took about an hour and I wasn’t given any type of sedation or anesthesia for it. I also met with my vascular surgeon this week and I have a date for my next surgery which will be on August 6th. I have something called an A/V fistula in my arm. Mine was caused from a puncture creating a connection between the major brachial artery and vein. With it being large and connecting a larger artery, there is risk that it will put stress on the heart and almost acts as if it is a hole in the heart in the sense that blood and oxygen bypass other areas to create a higher amount of blood flow in that particular area of the arm. It can contribute to symptoms of shortness of breath and can lead to heart failure if left untreated. I am glad that my cardiologist noticed it and that I will be getting it repaired soon.

    Have you ever heard of an A/V fistula? If you are on dialysis, did you have one created in your body? Are the velocities of blood flow checked by your doctors if you have one of these?

  • #18414
     Colleen Steele 
    Keymaster

    Brittany, that is a scary and interesting that the fistula in your arm has contributed to the issues with your heart and your breathing. The chain reactions that can happen in our body is frightening. Thank God your amazing cardiologist noticed it and is pro-active in it’s repair! I’m sorry though that it means more hospital time and worry for you.

    • #18418
       Brittany Foster 
      Keymaster

      Thank you Colleen,
      It certainly feels like so much going on right now and it can all get overwhelming at times. I am glad that they are being proactive too in getting this fixed up. The body really does work in crazy ways! You would never know that something like that could contribute to the heart and circulation in the body. It makes sense when you read up about the mechanisms of things but still !

      • #18420
         Colleen Steele 
        Keymaster

        I was wondering how this week went for you so thank you for updating. Hopefully in the long wrong all of this will have you feeling better and out of the hospital more than in it. I hope you have a nice weekend.

      • #18422
         Brittany Foster 
        Keymaster

        Thank you Colleen,
        It was a long week of frustration, anxiety, depression, you name it, I was feeling all the feels. Just had a therapy session that unfortunately wasn’t as helpful especially because I feel so closed off and distant right now but just don’t need any more added frustration . It’s hard when people don’t “get it” I just feel like it’s hard to understand but then when it is hard for others to understand I get mad and angry with them and a lot of times this happens in therapy especially when things have been hard.

      • #18442
         Colleen Steele 
        Keymaster

        I feel for you Brittany and I’m so sorry that you have been going through so much! On the bright side, he sure did inspire a great column out of you this week. I hope writing it was therapeutic for you!

  • #18433
     Jen Cueva 
    Participant

    Oh my, Brittany! I am so sorry that you have yet another surgery coming up so soon. I am happy that you’re Cardiologist is proactive and caught that A/V fistula. Are you having a surgery where they have to open it up or can it be fixed with a catheter?

    I know that many dialysis patients have A/V fistulas surgically placed and yes they are checked for blood flow.

    I am keeping you in my thoughts and so worried that you already have been through too much. I hope and pray that all of this is completed for you soon so your body can fully recover physically and mentally and you start seeing the improvements. I cannot even imagine how scary, frustrated, and anxious you must be. Overwhelming doesn’t even touch this. I hope that you are staying busy with therapy as well to help you process all of this and so fast. Love you…

    • #18443
       Jen Cueva 
      Participant

      Brittany, I’m sorry I misread about therapy. I hope that you will have a better appointment for your next visit. I often close up at the most difficult times as well.

      • #18448
         Brittany Foster 
        Keymaster

        Thank you so much for all your support, Jen! Love you too and your support and encouragement always really means a lot to me. Same for you Colleen. It’s good to have people in my life who “get it”. I tend to just get so frustrated with others that really don’t understand that I’m just at the point where it’s sometimes hard to keep explaining myself over and over again. Sometimes it can get to feel like a broken record! Ever feel like that? Especially at doctor appointments or therapy appointments? It’s hard because there has been so much time invested in therapy and I know there are difficult days for everyone. Even some of my top docs have their “off” moments or moments that catch me off guard.

      • #18451
         Jen Cueva 
        Participant

        Yes, I definitely can relate to feeling like ” a broken record ”, this can be extremely draining, too.

        Just want you yo know that you’re a huge support and inspiration to myself and others. Please know that we want to support you, too. Text, here, email, or call me anytime.

        I know that those who are always there for others often are left in the dark at their times of need. It’s also tougher fur me to ask for support rather than offer my support to others. Great big hugs from Texas🤗

    • #18450
       Brittany Foster 
      Keymaster

      Hi Jen,
      It is going to be opened at my brachial artery with an incision kind of along the line of the elbow in the forearm like where that crease is that they usually go for bloodwork (I’m sure you know exactly where I’m talking about ) . I have a bad case of the brain fog today so my thoughts seem jumbled right now haha! One of those days.

      • #18452
         Jen Cueva 
        Participant

        Oh ok, so it’s going to be in your antecubital area, which is that area inside your elbow, for better understanding, lol

        Oh no, that brain fog definitely increases when you’re dressed and sleep deprived. Does that sound like you right now? Hugs to you, Brittany 🤗

  • #18497
     Jimi Mcintosh 
    Participant

    Hang in there Brittany, you are the path to healing. I dread July and August, time for heart cath, and other invasive procedures. I am praying for your healing.

    • #18502
       Brittany Foster 
      Keymaster

      Hi Jimi,
      Thank you so much. I am thinking of you too as you said that you have a heart cath coming up! Are you put to sleep or given sedation for this or is this something that you get done without sedation? I have had both and I really don’t prefer being awake for it, it really did bother me. I hope that you will be able to be as comfortable as possible during yours even though nothing about getting a procedure done seems comfortable ! When is the date of your procedure so I can make sure to keep you in my thoughts too during that time?

    • #18517
       Jen Cueva 
      Participant

      Good luck to you, Jimi! Although these heart catheters are routine, it doesn’t make them any easier.

      I’ve only been lightly sedated once for a heart cath. The numbing before the cath and the pressure they hold after is the worst for me. It’s uncomfortable during the procedure but after 14 years, I think I’m used to it. I still get anxious and nervous until they get it in there. I don’t think that will ever go away, lol

      • #18547
         Brittany Foster 
        Keymaster

        Jen,
        I have been having surgeries since I was literally born and being honest it’s not something that we can ever “get over” or get used to. I think it just becomes so routine after awhile that it is more expected so we accept it easier. At first it is so difficult though especially all the nerves leading up to something. For me, the nervousness and anxiety I feel BEFORE is almost worse than the actual moment it’s happening.

      • #18553
         Jen Cueva 
        Participant

        Brittany, you’re correct! I guess we never really get ” used ” to these things. Although, I prefer a heart catheter any day over the dentist, lol

        I think as you say, I’ve accepted it’s part of my life. But, as I mentioned I still feel anxious and nervous leading up to the procedure. As you said, I often feel I’m over-anxious and then it’s over. I tend to do this before appointments at times too. I think it’s mainly been after multiple hospital visits. The hospital is across the street. via sky bridge from my PH doctor. It’s real struggles, I know you’ve talked about before. I can not imagine how this would trigger you, after all, you’ve been through.

      • #18570
         Brittany Foster 
        Keymaster

        I completely can relate to your anxiety, Jen. You definitely understand what it’s like. It is really hard to be in an area of unknown and I feel like that is something that I stress out about a lot before appointments or procedures because I just take “guesses” at what may and may not happen. A lot of times it helps me to just write it all down and get my worries out on paper so that they don’t take up as much room in my head. Sometimes I like just old fashion writing it out in a notebook, other times I take more to writing about it and typing it out. Something about my hands typing on the keyboard and flying over the keys can be therapeutic lol! I take out my frustrations on my poor computer when I type. I’m surprised I don’t have missing keys yet LOL! Is there anything in particular that helps you with this anxiety ?

    • #18526
       Colleen Steele 
      Keymaster

      Jimi, I know how the heart cath and other check-up procedure can weigh on the mind before the appointments. I will keep you in thought and prayer. Update us when you can.

  • #18555
     Carol Volckmann 
    Participant

    Hi Brittney, my heart goes out to you! You have been through and still going through so much. When I feel I have no control, that is when I get really down, stressed out, become very short tempered and sometimes just want to cry!

    It’s the not knowing, it is the waiting, it is when even the professionals don’t get it – those are the bad times.

    When those times creep in, I focus on what I can control, I keep asking questions even to the therapist I will let them know how it feels when they don’t seem to get it!

    Hang in there Brittney, you are loved by so many and even when we don’t get it all the time, we care, and love you and support you all along!
    ❤❤❤❤
    Carol

    • #18559
       Jen Cueva 
      Participant

      Carol, such true words! You totally DO get it! Hugs to you 🤗

    • #18571
       Brittany Foster 
      Keymaster

      Thank you so much for saying all of that, Carol! And thank you for your honesty and opening up about your own worries and feelings too. I know that is not always easy to do. It means a lot to know that there are so many people who support me and people I can turn to who do “get it”. I’m thankful for this online community and to have such amazing people in my corner, even when it’s hard!

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