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    • #25956
      Jen Cueva
      Moderator

      Some PH centers prefer to do right heart caths while patients are under sedation. Others prefer no sedation. I have experienced both depending on which PH center was ordering the heart cath. Most of mine have been done without any type of sedation.

      What about you? Have you had heart caths with or without sedation? Which do you prefer? Why? Let’s talk about this.

    • #25962
      Dawn
      Participant

      @jenc, My first two right side caths were done through my arm (one at the wrist, one at the bend in my arm), with just enough sedation that I was awake but didn’t care what they were doing to me! The most recent one I had last October was the first one I had at Johns Hopkins, and they did it through the neck with no sedation at all. I was very nervous about having it done through the neck, but had no issues at all with it. I think I prefer it going in through the neck. It was so ‘easy’, and the doctor and entire team was wonderful. The only ‘iffy’ thing for me, no matter how it’s done, is dealing with the warfarin tapering off & re-starting. Always a nervous issue for me because of my history of embolisms/dvt.

    • #25971
      Jen Cueva
      Moderator

      Hi @dawnt, thanks for sharing your heart cath experiences. I have never had one through the wrist or arm, although I have heard from others who have. Mine has been through the neck or the groin. I prefer the neck. The only one that I have had in 15 years with sedation was the first one, which was both the right and left heart cath. I find it interesting as to which place some like to have their caths. My veins are tiny, so last time, they said they might need to start using the groin again.

      Although I am no longer on blood thinners, I can see how this would be stressful as you are prone to blood clots. Do you stop it for 3 days before? Or how long do they have you off of it? This must bring on quite a bit of anxiety. Do you take something to help with this anxiety before the cath?

    • #25978
      Dawn
      Participant

      Hi @jenc. They usually start to change the warfarin 5-7 days before the procedure. As the procedure gets closer they’ll take me off the warfarin and have me use lovenox shots. I don’t take anything for anxiety, it just makes me very careful to watch for any signs of any issues. So far I’ve had no issues, so I remind myself of that each time I have one coming up. My dr at Hopkins told me in March that he’d like me to have a pulmonary function test, imagining and a rt side cath each year.

    • #25980
      Colleen Steele
      Keymaster

      @jenc and @dawnt thank you for sharing your experiences. Funny, I was going to post a similar topic.

      Cullen has always received sedation for heart cath’s. When his PH progressed severely they just stopped doing them and relied on ECHO’s and EKG’s – but by then he was listed for transplant anyway. He had a few through the neck but most of the time through the groin area. Like you Jen, he has small, flat veins which don’t make things easy.

      He has had cath’s post-transplant. Mainly because he has been under pediatric care they continued to be done under sedation. He just transitioned to adult and due to an emergency this weekend he had a biopsy of his heart and an angiogram. It was his first time for both without sedation and he did great!

      They went in the neck for the biopsy and through the arm for the angiogram. He said he barely felt a thing except when the surgeon went to pull out his arm it started painfully convulsing. It surprised everyone because I guess that doesn’t happen often. He was very dehydrated which is why they think it happened. Has that ever happened to anyone else?

    • #25985
      Dawn
      Participant

      @colleensteele, I hope it turned out to be nothing too serious with your son. You & he are in my thoughts, and sending out a prayer.

    • #25996
      Jen Cueva
      Moderator

      Hi @dawnt, it sounds like you are already the expert with weaning off warfarin and onto the Lovenox shots. I hated those shots as the nurses said I did not have enough fat. It is all skin, lol. I could find planet fat on my belly-hehe.

      I also usually have a right heart cath at least each year. Most often, it happens more than once. We typically do an Echo at least every 6 months. Do you also have an Echo in between?

      I am grateful that you know your body, the signs to look out for, and that so far you have been successful without issues. That is a great way to keep the anxiety levels down.

    • #25997
      Jen Cueva
      Moderator

      Hi @colleensteele, oh no, Cullen was convulsing after the angiogram. I have not heard of that. I would have thought it hit a never or several to cause that reaction. I am grateful that it was short-lived, and it all ended well.

      Wow, that is a transition to adulthood quickly, no sedation, and the convulsing. How was he after and now at home? It sounds like he held up like the trooper he is and no big deals with not having sedation.

      I am hopeful that you and him both are resting better now that y’all are at home. Please keep us posted.

    • #26005
      Rayetta
      Participant

      I didn’t even realize that you could have a heart cath without sedation. My first heart cath was when I was first admitted into the hospital and diagnosed with PH. (February 2018) For that one I also had a pericardiocentesis. I was put completely out for that one. In November of that same year I had another one, although I had sedation I was aware of what was going on and could even communicate with the hospital staff. Mine caths have always been done in my right wrist. I haven’t had one in the groin or neck.

    • #26010
      Alfred Gronroos
      Participant

      My one and only rt/lt cathe was in my groin on the right leg. They gave me a bit of sedation but I was excited to watch the procedure on this huge screen placed for easy viewing. The surgeon came in and as she started to insert my leg started twitching. I could not stop it. The anesthesiologist opened up the tube on my arm and I did not get to watch anything more. I was out. I enjoy watching all the needles etc. I can make the nurses nervous.

      • #26051
        Jen Cueva
        Moderator

        Hi @alfredjohn, thanks for sharing your experience. I love watching it as they go through with the cath. I usually start shaking and trembling from it being so cold, and they add the heaters to my bed, which almost put me to sleep. Have you used those yet?

    • #26020
      Carol Volckmann
      Participant

      Wow, Colleen what you and Collen must have gone through – it had to be very scary. So sorry Collen went through that.

      My first RH cath was in the groin in order to confirm I had. PAH. The second one was done through the neck artery under excercise. I was on my back woth my feet up on bicycle peddles and was asked to go as fast as I could then stop then repeat. No sedation for either just numbing the area prior. It was a bit weird.

      Currently I have echos every year.

    • #26022
      Colleen Steele
      Keymaster

      @dawnt thank you. He was taken by ambulance on Friday night with chest pains and shortness of breath. There was concern that his heart was experiencing rejection and/or he developed an infection. The results came back with great news. His heart and lungs are doing very well. His kidney disease is worsening and he was severely dehydrated. That is what caused the episode. He is feeling much better now and is at home.

    • #26023
      Colleen Steele
      Keymaster

      @jenc and @cdvol3gmail-com actually, I was quite amazed at how well Cullen handled it. He didn’t seem nervous about having it without sedation.

      Jen, it was just his arm that spasmed but I guess it was pretty intense. I don’t think this commonly happens. We were told the doctor who did the angiogram is one of the best in the nation. Cullen said he seemed really upset that happened to Cullen. I told Cullen, “Way to go, he WAS the best in the nation but you just ruined his streak”! LOL!

      They said it was because he was dehydrated even after receiving IV fluids. Cullen wasn’t in any pain after except his arm was a bit sore. Nothing he couldn’t handle.

    • #26035
      Dawn
      Participant

      @colleensteele, so glad everything is good with Cullen! I liked the ‘nothing he couldn’t handle’. I’ve found great perspective in many areas of my life when compared to dealing with all my health issues! Sounds like Cullen has too.


      @jenc
      , I’ve had an echo each year since my diagnosis & that is one of the things my dr at Hopkins wants done yearly as well. Unfortunately, I have far more fat available for the lovenox shots than I’ll ever need! The first dvt/pulmonary emboli I had my inr was .9 and they wouldn’t let me go home until it got to 2.0 or better. It was moving up .1 per day, and some days not at all. When it got to 1.8/1.9 they agreed to let me go home with the lovenox. My mother was a long time diabetic, and although she had passed before I knew I had any of these issues, I was used to helping her with getting her needles ready and giving her shots. They had me show them I could give myself a shot, let me go home, and it was only 2 shots later that I was to therapeutic level on my inr. I get so homesick when I’m in the hospital it’s almost like torture! Makes me feel like such a little kid, but that’s just how it is.

    • #26038
      Cathleen Hayes
      Participant

      Hello:
      I had a right heart catheterization last January. I was advised to find a doctor who has performed many of these procedures as the result will be more accurate. I actually went to one of the accredited Pulmonary Hypertension centers and have had the best of care. The heart cath was done thru my neck and no sedation. I believe they do give you something to relax, but it was minimal. The procedure was painless and easy to tolerate. So best of luck to anyone preparing for this procedure.

    • #26050
      Jen Cueva
      Moderator

      Wow, @colleensteele, the best in the nation! I am impressed already, well until Cullen came through, hehe. JK, I am grateful that he was OK, and nothing came from that spasm. I love that Cullen has that attitude, nothing he couldn’t handle! My late Pawpaw always said, “ain’t no biggie,” and I still think of that and him when I am going through something that I may feel overwhelmed by, love it!

      I am happy that he is at home and doing well. I hope that YOU are finally starting to rest a bit more, too. Dehydration is horrible. I have been admitted numerous times with severe dehydration. Crazy, how it comes on so fast, especially once my kidneys were damaged.

    • #26052
      Jen Cueva
      Moderator

      Thank you for sharing your RHC experience, @cathyhayes. Going to an accredited PH center where the doctors are trained to know what they are looking for is always the best option if that is available. I am happy to hear that you had your heart cath there without issues. Do you know when you will have another one?

    • #26093
      Margie Novak
      Participant

      Hello all… I never even knew you could be sedated for a right heart cath. I had two of them both awake They went through my neck for both of them and it was fine. The team at UPMC has it down to a science The only thing I always ask is that they tell me what step we are on (i.e. when they start; when they are half done; and when it is finished) I don’t need to know anything else even though I can hear them. The only thing I kind of mind is that they cover you with this sheet and your face is covered.. that is weird. Hate enclosed spaces. Otherwise, no problems. It takes longer for them to set you up for it than the procedure itself!! Stay safe fellow PHers!! Be strong!

    • #26098
      Jimi Mcintosh
      Participant

      Only got sedation during a double cath, because the cardiologist was having difficulty in feeding the probe after his 4th attempt. I prefer to be cognizant, to watch their faces for aniexty and to ask questions.

    • #26100
      Colleen Steele
      Keymaster

      @margie-novak I believe that they normally prefer to do this procedure without sedation on adults. It’s usually with pediatric patients that they sedate. I don’t think a child could get through it without sedation because they would be too frightened. Overall I think it’s a fairly common procedure and most hospitals have doctors with lots of experience performing caths. I hope that makes anyone having to go through one for the first time feel a little more at ease.

    • #26101
      Colleen Steele
      Keymaster

      @jimi unless it something that might be painful I think my son has reached a point where he prefers to be awake for procedures such as this. If anything, he finds it interesting.

    • #26106
      Jimi Mcintosh
      Participant

      I just had eye surgery and was awake for the procedure, because sedation could have been risky for me. Pain is different for everyone. I have a high pain tolerance. I think sometimes that I am afraid of being put to sleep. The pain is manageable most of the time. Your son has had so many procedures that he does not experience the pain and/or it is a control thing. I had had trouble with sedation, being bought back, cause too
      Much was given to put me undet

    • #26130
      Colleen Steele
      Keymaster

      @jimi thanks for sharing. I hope the eye surgery went well and was worth it. How is the recovery going?

      When my son had PH sedation was scary but post-transplant the concern isn’t as intense. Still, I think it’s best if he has procedures without sedation if he can tolerate it. He’s been through so much since he was 6 years old that just like you, at this point he has a high tolerance for pain. That being said, he claims he really didn’t feel much to be concerned about during the biopsy and angiogram, at least not until they pulled out of his arm and it started convulsing. Even then, he said he wasn’t scared, just a bit sore.

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