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    • #15162
      C. Todaro
      Participant

      Ok, my Pulmonologist thought I might actually have asthma, instead of PH. I was put on inhalers and sent for breathing tests. A Methacholine test showed that my lungs behave abnormally and they didn’t ultimately benefit from the rescue medication given during the test.

      My Pulmonologist now wants to do a right heart cath in order to see what is going on with my lungs and heart. He suspects PH, but also thinks there could be other problems.

      Can anyone tell me what their experience was with having a RHC done? How long did the appt take? How long to recover? Were you put to sleep for the test?

      I recently removed the bandages from having a leg vein ablation done; I’m not looking forward to a similar experience in my neck! I’m allergic to lidocaine, so I have a nice big itchy rash following the length of the ablated vein up my leg. Nice.

      It’s late. Please forgive me my misspellings.

      **Spam replies/spammers will be reported and dealt with.**

    • #15177
      V.R. Peterson
      Participant

      I wasn’t going to answer because I’m just the mom of a PH patient and only know what he has told me. However, since nobody else has chimed in, I’ll tell you what my son told me. I don’t know the answer to all your questions, but I can answer a few

      I don’t know how long it took, but there are different ways of doing RHC (each with different recovery times). Most patients are lightly sedated, though if you’re lightly sedated, you won’t be able to drive for 24 hours. It can be done through the groin or neck; my son had his through his neck. They used light sedation the first two times — the first time he fell asleep, and the second time he stayed awake (and even talked to the doctors during the procedure). The third time, he decided he “didn’t need no stinkin help” driving to or from the hospital (both his dad and I offered), so he had to stay fully awake. He was able to drive home a few hours after they finished the third RHC.

      I’ve learned that when RHC is done through the groin, the patient needs to stay flat on their back for several hours afterward.

      My son reports that Right Heart Caths are uncomfortable but not painful, even when fully awake.I hope that answers some of your questions. He says it’s not near as scary as it sounds.

      • #15182
        Brittany Foster
        Keymaster

        I had heard of similar experiences. I had a few heart caths when I was a child that I don’t remember much of and I had a heart cath for an ablation and then a right heart cath just last year. The one going through the groin caused some cramping for me when they were putting it through but other than that it was less painful than the one at the neck. For me, my vessels are pretty tight and narrowed so I could feel the heart cath going through the neck and it was extremely painful. I didn’t have any sedation at all when I was getting it done. If they can do it with the sedation or put you to sleep for a little then I would do that if you can and suggest that. The reason why I had to stay up for mine was because I had an exercise heart cath so I had to be alert enough to exercise while the cath was in. This was how they found the increase in pressure. Usually people are okay the next day and the recovery is only just to “lay low the first day” and maybe a second day, depending on how you feel and how the effects of sedation hit you. Have you been sedated for anything before? Do you know how your body responds to that?

      • #15293
        Nathan Young
        Participant

        So far I have had 3 Right Heart Catheterization’s since my diagnosis in 2009. I don’t really remember my first Right Heart Cath as I was on vacation in Puerto Rico visiting my wife’s family when I fell ill where I was admitted to 2 hospitals there. Due to the fact I don’t speak spanish that whole thing was frightening and I don’t scare easy. I ended up cutting my vacation early and flying to my childhood home in Kansas City, MO to get care their. I was so ill I barely remember anything from that trip but as soon as I got off the plane my wife checked me into a hospital there. That is where I had my first RHC that I don’t remember at all other than what my wife tells me since the hospitals Director of Cardiology was nice enough to let my wife sit in the viewing area that is normally reserved for other doctors and medical students. I was told that I sat up in the middle of the procedure to look for her.

        My second Right Heart Cath was done at the KU Medical Center in Kansas City. I was completely awake for that procedure and the medical team let me ask questions for everything they were doing during the RHC which was pretty cool. It was fairly painless even though they went through my Jugular Vein to do the RHC. That procedure was done on an out patient basis mainly because I refused all anesthetics as I did not want any pain medication as I have a high pain tolerance so I didyneed anything for pain.

        My 3rd RHC was done recently last year at the Mayo Clinic in Jacksonville, FL. That procedure was wven easier than the one I had at KU Medical Center as they went through my right arm to complete the RHC. Once again it was done on an outpatient basis without any pain medication as I already take enough medication as it is and I don’t want to take any more medication unless its abdolutely necessary which is why I refused pain meds on both occasions.

        With that said anyone who is thinking about or needs to have a Right Heart Cath has nothing to worry about as its painless and it should only take about an hour or less to complete. My last RHC was done in 30 minutes from start to finish which was the time I climbed onto the surgery table to the time I climbed off. The longest part about the whole thing was PreOp which is time consuming as I was in PreOp for almost 2 hours prior to the procedure.

        If I got to choose which part of my body they use as the entry point for the RHC I eould choose the arm every time as it poses less risk compared to going through the neck and less painful than the groin area.

        Hope that helps some.

        Nathan Young

        • #15296
          Brittany Foster
          Keymaster

          Thank you so much for your feedback Nathan. It’s good to hear other’s stories about their heart caths and it seems like you have a had a few (and experience with them going through different areas of the body). I’m sorry to hear about your scary experience and I can’t even imagine how hard that first one must have been for you. I’m glad you were able to get to another hospital to get the procedure. Are you seeing PH doctors at the Mayo Clinic? How often do they recommend that you get a RHC done?

    • #15213
      Paul
      Participant

      Make sure that the person that does the Rt.side Ht.cath has the facilities to test the small samples of Meds that are right for you. I had mine done at the Med. univ. of S.C. By Dr.Daniel Steinberg & it was a piece of cake! An I.V.was started & discontinued at my request because it was not needed. Totally painless, other locals are available besides xylocaine, recovery was the time needed to dress, no marks or bruising! Actually I was bored & talked to the anesthesia nurse during the procedure! Usually a chest x-ray with contrast is needed to confirm diagnosis! Good luck! Paul Tagler D.M.D.

      • #15219
        Brittany Foster
        Keymaster

        Great advice Paul ! It is always a good thing when the doctors have the medications on hand to see how each patient reacts and if the pressures are lowered when given medications. Sometimes I have even heard of people staying overnight in the hospital and given trials of different medications and monitored in the hospital for improvement before being sent home. Definitely a question to bring up to doctors for anyone getting a RHC for the first time.

    • #15217
      Jan RVing
      Participant

      I had two RHC’s and LHC’s Nov. 13 and 11/19. The first one they went through the wrist for the LHC and tried to go through a vein for the LHC but could not go in that way due to my respiration dropping to low the following week the cardiologist went through the groin and did both. It doesn’t hurt just rougher on when you can be discharged to go home. Through the groin if they do not use a plug you have to lay on your back for 5 hours and no movement of the groin and leg of the side they did the cath on. I have had at least10 heart caths and two right heart caths now. They will be able to see what your pressures are at in the lung and will be able to diagnose you easier.

      • #15220
        Brittany Foster
        Keymaster

        Hi Jan,
        I remember them trying to get it through my wrist too. They were unsuccesful unfortunately. Instead of my arteries and veins getting larger as they go up my arm and to my chest, they actually get smaller and spiderweb out. (it’s bizarre !) The always think it’s my vessels constricting because I’m nervous but the shape of my vessels and arteries are just not typical to get it through spots like that (same reason why I had the pain in the neck when they did the heart cath). I have heard that it is supposed to be a painless procedure and that doctors try to make it as painless as possible ! You certainly have had a lot of them ! How often do you need to get them done?

    • #15238
      Jimi Mcintosh
      Participant

      I had a double cath in August, they tried for the longest on right groin and then they had to move to the left groin, to perform a right and left cath.They finally realized that they had not given any pain meds and it hurt. After they administered the sedative, if took a while to deaden the areas. I was kept overnite, with compression on both sides. I am still experiencing pain on the right side. Cardiologist said it should go away. The results are worth the pain and inconvenience, you instantly know what you pressure is in your lungs and the condition of you right and left chambers.

      the echo is good for getting a real time picture of the heart, lungs and blood flow. I often wonder if the medication is working, since my exercise ability is 1/2 of what it was a year ago. Keep up with new meds, treatments and research opportunities, being a research may not help you , but could help someone else.

      • #15246
        Brittany Foster
        Keymaster

        So true Jimi,
        We definitely learn to be our own advocate with research. You’re right, even if your research doesn’t exactly help your particular situation, it may be very helpful to someone else going through this.

        You have a good outlook on getting a heart cath. It’s worth the price you pay afterwards to get more information on pressures in the lungs. Even though it can be painful and uncomfortable for some (usually depending on how they insert the cath and where) , it still is worth the bit of discomfort when you finally get some answers and can start a treatment plan. I’m sorry you’re still experiencing discomfort though and I hope that goes away for you or at least gets better.

    • #15346
      Sharon Rozo
      Participant

      I’m not sure if the OP’s RHC is long over by now, but I thought I’d add my experience as well. I’ve had 4 or 5 right heart caths since my diagnosis in 2015. The first one was through the neck and I was in very bad shape at that time, so I don’t remember much at all. I do know that I was lightly sedated and it seemed very quick. In reality it usually only takes 20 minutes tops for a regular RHC. I then had one through the groin and this was the only one where I felt some slight pain while it was going in. I was in the hospital at the time, so I couldn’t go home, but I still had to lay sill for 2 hours afterwards. The next one was a brachial RHC, or through the arm. This was the easiest for me and I felt zero pain. I was very lightly sedated and the doctor and nurses were talking to me while it was going on and I watched my heart on the screen. The recovery time for that one was a half hour and I was able to go (I had a ride home, though). The last 1 or 2 were also through the neck. They tried the brachial again, but my veins were not cooperating that time – they were rolling, so the doctor couldn’t get through. He did ask the last 1or 2 times which way I’d prefer to have it done, so you should be able to choose what you’re most comfortable with. Everyone is different, but for me the groin was the least pleasant. Overall, they get easier and although it is invasive, it’s really easy to get through. Side note, I haven’t had one in over a year because I’ve been getting 3D echocardiograms and this seems to give the doctors such an accurate picture that a RHC is not necessary as often in my case.

      • #15352
        Brittany Foster
        Keymaster

        Sharon,
        Thank you for all of this info. You definitely have had experience with the RHC tried different ways and I love hearing what you have to say about each way. I think it’s great that your doctors give you some choice and talk to you about what one was less painful for you so they can attempt that the next time. I had a similar experience to you with the groin. I have a lot of scar tissue in the groin area and the lower abdomen area so my surgeon thought that could have been contributing to my pain. The neck was also something that was very painful for me and I couldn’t lift my head up without assistance for about 4 days after. It wasn’t pleasant and I relied on pain medication for a few days to get me through it. They attemoted the arm one for me too but after 3 times back and forth, they found that my arteries actually get smaller as they go up my arm and doesn’t provide a good access. The only way they can do it succesfully is through the neck even though for me it is a literal pain. The doctors are even timid to do it on me again. I will have to ask about the 3D echo and see if they could do an exercise portion along with it since that’s where they noticed my elevation in pressure.

    • #15388
      saf6m
      Participant

      I had my second right heart catherization just 4 days ago. The first time, I was an inpatient at the hospital. I must have been sedated as I remember nothing about it! However, this week, I had an outpatient RHC without any sedation, as my Cardiologist ( with the approval of my pulmonologist want me to be able to do exercises using 3 pound weights in each hand (after he had done the first part of the cath.) Without any sedation, only numbing using lidocaine or zylocaine, the test was a bit uncomfortable, but not painful. I, too was able to talk and laugh during the procedure. I could not see, as the team had put a drape over my head – I was catherized through the neck. I am a registered nurse and have been told that nurses and doctors make horrible patients! I know that doctors are not good patients – I don’t know about nurses, but I can say that I do not like painful procedures. As a nurse, also – if you are allergic to lidocaine, you are probably allergic to all of the “caine” medications. Good luck with your procedure. My test shows that the medication I am taking for PAH is helping somewhat – my pressures were better than they were when I was diagnosed 18 months ago.

      • #15405
        Brittany Foster
        Keymaster

        I’m so glad to hear that your pressures are improving. Was this a routine cath meaning that you were due for one or did you have a difference in symptoms and they decided to do it? After the procedure are they thinking of adjusting your medications or adding anything to what you are currently taking? I’ve had the exercise heart cath before and its definitely an awkward experience but they were able to get a lot of info from me which was great. Especially since I’m so active anyways. Hoping everything turned out okay and that you’re recovering at your own pace. Thinking of you!

    • #15413
      C. Todaro
      Participant

      Thanks all for sharing your RHC experiences.
      Update: A 2nd echo came back showing mild hypertension so I decided to delay my RHC another month. Why rush to drill a hole in my neck and potentially cause another lidocaine reaction, right? Then my cardiologist explained pressures can vary quite a bit within the same person and I definitely need to have the rhc done. Oops.

      • #15416
        Brittany Foster
        Keymaster

        I would definitely agree with the doctor. Pressures can change even from echo to RHC
        Its better to get the most accurate reading possible even though I know that thinking about another one must bring up a lot of stress and worry for you. Have faith and trust in knowing that this next step will help doctors determine tne BEST course of action that you deserve . Keep us updated !

    • #15414
      saf6m
      Participant

      Although, it is your decision to delay RHC, and your Cardiologist recommends that you have it – He can evaluate whether your medications are effective, whether he needs to adjust you current meds and/or add additional medications. PAH is not curable, but the Cardiologist wants to maintain a longer living expectation as well as make your more comfortable and your breathing easier.

      • #15417
        Brittany Foster
        Keymaster

        It definitely helps to think about all the benefits that can come out of a cleat evaluation with the cath.
        You’re so rigjt! Thank you for the honest feedback.

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