This topic contains 46 replies, has 11 voices, and was last updated by  Jen Cueva 1 week ago.

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  • #18732
     Donna Adams 
    Participant

    So tomorrow is my first right heart cath. I’m excited (kinda) to be finally getting some specific data and treatment. It’s been 5 years since my diagnosis of secondary PH as we were working our way through the possible causes. Asthma, sleep apnea, copd all with no improvement to my PH.

    I’m not so frightened by the procedure as I am by the thought that they might keep me over night! Being single and this sick brings with it a whole new set of problems. Especially with pets at home!

  • #18736
     Carol alexander 
    Participant

    I had my first right heart Cath almost 1 year ago.i was a little apprehensive but everything went fine sounds scary I know everything will be fine so good luck and hang in their

    Hugs carol

  • #18737

    Hi Donna, I’ve had idiopathic PAH (with pulmonary embolisms initially) for 15 years. Over that time I have had 14 right heart caths, 3 left caths, some through my groin and most through my neck which I prefer. Going through your neck doesn’t require a lot of post op time that the groin requires. If they go through the groin the nurse will have to apply pressure for about an hour or so. Also you will need someone to drive you home. I have never had to stay overnight for any of the caths and I am not sedated during the procedure. They tell me that the tests are more accurate without sedation. It’s not painful at all, some initial discomfort during the insertion but they give you a numbing injection at the site location. Since this is your first cath it will feel a little strange at first but just watch the screen if you can, it’s pretty interesting. When I am waiting in pre-op cath area, I always have other people that are having their first cath and are very nervous about it. I tell them how many I have had and they are amazed. I tell them they will be fine and it seems to help. Well good luck with your test and please let me know if you have any other questions.

    Ron R.

    • #19530
       V.R. Peterson 
      Participant

      Ron, do you still have pulmonary embolisms, or have they dissolved? If they haven’t dissolved from taking anticoagulants, have you had further testing to rule out CTEPH (Chronic Thromboembolic Pulmonary Hypertension)? As Jen said, if you’ve got CTEPH, you have the only form of PH that can potentially be cured with PTE surgery. Those tests are echo and VQ (ventilation perfusion) scan. I know about CTEPH because my son has it. The PTE surgery didn’t cure him, but it did save his life.

  • #18738
     Brittany Foster 
    Keymaster

    Hi Donna,
    You certainly have come to the right place when asking this question. I know that we have such a mix of members here from ones that have had numerous heart caths throughout their life to ones that have just been recently diagnosed. I feel like everyone’s experience is so different. I had a couple caths through the groin. I actually found that one to be less painful than the neck, although most people think the neck isn’t painful. My situation is a little bit different though because I have years of scar tissue from heart caths that i had as a child for my congenital heart defects that gets in the way and irritates nerves as the cath is going through. The ones that I had done through the arm don’t hurt at all because they really do their best to numb up the area and will make SURE that you are numb and can’t feel anything but a little bit of pressure. When they are actually looking around it is pretty interesting to see all the numbers and actually see what they are doing. it makes me feel like I am in more control when I can visualize what’s happening. Some people prefer not to look, I guess it’s all about preference! Please keep us updated on how everything goes for you!

    • #19424
       Donna Adams 
      Participant

      Hi Ron R. You say “pulmonary embolisms initially” Where did the pulmonary embolisms go?

      • #19426
         Jen Cueva 
        Participant

        Hi Donna,
        I’m not Ron, but I wanted to share some information about pulmonary embolisms. I’m not sure of Ron’s experiences, but I know if it’s a blood clot that can be dissolved, meds often help in that process.

        Others have had PTE surgery. I know several PH patients who required this surgery. UCSD has a worldwide reputation of specializing in this PTE surgery.

        I hope this helps you some, Donna.

  • #18761
     Colleen Steele 
    Keymaster

    Donna, I will keep you in my thoughts and prayers tomorrow. The right heart cath is so important and valuable to diagnosis and treatment. It’s very good that you are having one done. My son, as a pediatric patient, has been put under each time. However, I’ve know people to have them done while awake and they were pleasantly surprised that it wasn’t painful or as scary as they had imagined it would be. They have gone in both by the neck and the groin area for my son. I think he actually prefers the groin because the neck seems to stay irritated longer. He always takes it easy for a day afterward and usually feels fine fairly quickly. Good luck and update us when you can.

    • #19430
       Donna Adams 
      Participant

      Thanks Jen. I ask because I was recently tested (VQ scan, CT angio) for blood clots and would possibly have gone to San Diego for PTE surgery. The tests showed several small and probably new clots and I’m now on Eliquis and no surgery at this point. I was just wondering what Ron’s specific situation was. Thank you!

      • #19436
         Brittany Foster 
        Keymaster

        Hi Donna,
        Are they expecting the medication to help those to go away or at least break down more? I hope that they will continue to keep a close eye on things. I know hearing about clots in your body must be frightening, especially dealing with PH and that too. I’m sure they are monitoring you closely. It’s good to know what to look out for too as far as physical symptoms so you can alert yourself if you don’t feel like yourself.

      • #19455
         Jen Cueva 
        Participant

        My pleasure, Donna. I’m happy to hear your clots are small, it sounds like they feel as if the Eliquis will dissolve your clots. I hope so.

        I have a close friend, she Durant have PH. She had several small blood clots in her leg and in her lungs a few months ago. Thankfully, she’s on meds to thin her blood and help dissolve the clots. So far, she’s feeling much better and I’m hoping her meds prevent further clots.

        I hope that your meds work as well and you do not require the PTE surgery.

  • #18763
     Brittany Foster 
    Keymaster

    Use some cold packs too on your neck because sometimes it can leave a bruise ! Ask your doctors about when to alternate with heat and cold compresses and the longer the cold packs last, the better! The ones that they give you that they crack open in the hospitals usually don’t last that long. Sometimes your local pharmacy will carry a better selection of cold packs that stay colder longer and the same for hot packs ! Ask about safe anti-inflammatory medications too. I’m sure if you are in a lot of pain they will have good recommendations. Make your comfort a priority !

  • #18769
     Donna Adams 
    Participant

    Thank you for all the positive vibes and great advice. I’m up at 3 am for my ride down the hill to St Josephs in Phoenix this morning. I’m actually looking forward to getting a “gold standard” diagnosis and data for treatment. I’ve watched a couple of videos so I’ll have some idea of what I’m watching on the screens during the testing. Thank you..til later…

  • #18781
     Jimi Mcintosh 
    Participant

    I hope all went well, the right heart cath is the most definitive test for PH. It will determine the severity and progression of your PH. I have progressed to a right and left, some discomfort, benefit, you know where you stand. Last one they tried on one side and had to move to the other side.

  • #18783
     Donna Adams 
    Participant

    My cath went well. I didn’t need any sedation at all. It did confirm pulmonary hypertension but my numbers weren’t awful 59/35. I haven’t been told anything else because it was my pulmonologist who ordered the test and a cardiologist who performed it so I need to talk to the doctor who ordered it. It wasn’t a bad experience at all. The people at St Josephs in Phoenix were wonderful. I’m looking forward to starting treatment and feeling well for the first time in years. Thank you to all who shared their experiences!

    • #18803
       Colleen Steele 
      Keymaster

      Oh Donna, I am so glad to hear that the cath went well! I’ll be anxious to hear what treatments they decided to try on you first. Whatever it is we will all be happy to help you through it.

    • #18805
       Jen Cueva 
      Participant

      I am so happy that your first heart rate went well, Donna. I know you’re glad to get that behind you and start treatment soon.

      I have had multiple caths, right mostly but left side several times, including last week. I always get anxious a tad before each cath, although the experiences I’ve had weren’t too bad. I’ve had them through both the groin and neck, depending on who is performing the cath makes a difference for me. My Cardiologist discussed using my arm, but because I can’t have Nitro, it wasn’t an option. I learned why I’ve never had one done through my arm, which I’ve heard many prefer.

      On a positive, no new issues on my heart cats. He did both left and right sides.

      • #18809
         Colleen Steele 
        Keymaster

        I had never heard of it being done in the arm until now. I’m pretty sure my son has only had the cath thru the groin or neck. I would love to hear a comparison from someone who has had it done all 3 ways.

      • #18820
         Brittany Foster 
        Keymaster

        No new changes is a good thing Jen! I am curious, why can’t they give you nitro? Is it because of the combo of other medications you are on for vasodialtion? I know sometimes they try these medications in the right heart cath to see if the vessels respond to it and if the pressures improve with dilation. They had to use nitro for me when I had my first heart cath because my vessels and arteries were all extremely constricted and weren’t opening as they should (this is just vessels and arteries through my body in general, not even necessarily the ones in the heart) this made access to an artery and cath access really difficult which is why my procedure took as long as it did.

      • #18857
         Jen Cueva 
        Participant

        Yes, no new issues is great news, Brittany. I cannot have Nitro because of my blood pressure is already low then add my 2 PH meds and the vasodilation properties.

        Brittany, wow, that’s a long procedure time. I hope they make you as comfortable as possible. I like watching the screen while they are doing mine, lol

    • #18818
       Brittany Foster 
      Keymaster

      Hi Donna,
      It is so encouraging to hear that the right heart cath went well and that the doctors took such good care of you. I knew you would be in good hands and I also know the feeling of relief that you feel when you have a cofirmed diagnosis and they can begin treatments. Are you going to be starting you patient inpatient or are you going to have it started as an outpatient at your clinic? I know sometimes people are admitted right after their cath but there are a few other reasons why they may be admitted, especially if their levels are dangerously high.

  • #18811
     Donna Adams 
    Participant

    Colleen, they were going to do mine through my right arm but couldn’t get a vein.

    • #18814
       Colleen Steele 
      Keymaster

      Donna, I would imagine they run into that problem with many. Most of the time they can only get veins in my son’s hands and sometimes even that is a challenge.

    • #18819
       Brittany Foster 
      Keymaster

      Donna,
      I know that the arm was really difficult for me too . The whole right heart cath took about 4 hours and 2 of the hours was honestly them trying to get access into my arm veins. They ended up going through the neck which was extremely unpleasant for me and really scared me into ever wanting to do it that way again. Down the neck is a BIG NO NO for me.

  • #18868
     Rebecca Talkie 
    Participant

    I immediately wanted to read this thread because I have been told that a right heart cath is my next step. My Bubble Echo was negative – no holes in my heart but showed an enlarged pulmonary artery. This is new. The aortic stenosis is mild and not new. Thing is, I expected to get this done in July before my big trip the end of August. But my pulmonologist put me off. I see him in mid August so the earliest I can get this done is early October. I really want to know. In my mind, I am becoming more symptomatic.
    BTW when the cath is done through the arm it is called brachial. I doubt sincerely I will be able to do this without some sort of medication to calm me. As a nurse, I know exactly what they are doing and they are doing it to ME. I have a very well developed fight or flight reaction. Even though my brain might be calm, my body shakes. Thanks for posting your experience.

    • #18874
       Colleen Steele 
      Keymaster

      Rebecca, I’m sorry to hear that your pulmonologist has delayed your heart cath. Is he/she a PH specialist because if not, you might consider finding one, especially if you are becoming more symptomatic. Most specialists with hearing that would push a cath to the forefront.

      Thank you for giving the medical term for the arm cath! Update us when you can on how you are doing and keep after your doctor about doing the cath sooner than later.

  • #19522
     Beverly 
    Participant

    I am glad to see the post come up again, I have my second RHC but it has been 15 years since the last. They had to go through the groin because my neck was to tight. Definitely a little nervous because my autoimmune makes recovery a little different on the recovery side. Hopefully they try the neck again. The dr wasn’t even going to insist on the test and said I could wait a year, he said it wouldn’t make the disease any worse if I had it. He told me that I didn’t look like his normal PH patients and that I would be very atypical. He said maybe a 5% chance of a positive diagnosis. I told him to do the test because not knowing is far worse for me. My walk test was great, the echo showed 42 for the pulmonary pressure. The lung test he said that the dlco could have been inaccurately measured. So I don’t know what to think.

    • #19526
       Brittany Foster 
      Keymaster

      Hi Beverly,
      Did you have a recent right heart cath or was the last one you had 15 years ago? My apologies if I’m misunderstanding what you said in your comment. It sounds like you had the echo done that showed elevated pressures after walking. Do the doctors seem concerned about this or are they treating you with any medications currently and hoping this improves things?

      I have had experience with a cath through the groin and it is NOT fun at all. Once they even had to do blood work from my groin in the hospital because I was so dehydrated that nobody could get a proper IV access. The groin really caused a lot of abdomen pain for me when they were doing it. The cath they did this way was also part of an ablation for my heart too so I really felt the discomfort. Hopefully if you ever needed another one they would be able to get better access on you.

      • #19534
         Beverly 
        Participant

        Sorry Brittany that I was not more clear. My last RHC was 15 years, they told me no PH. The walking test came back normal for my oxygen even though I was a little light headed. The echo was done at rest and that is probably the only reason they are doing the RHC and also having scleroderma puts me at a higher risk. So they will always screen me for PH. No medications at all, he doesn’t think I have PH, he said that I could have been scrunched up and that is why my pressure was up. I went in for chest pain last year and they said I had PVC’s but that it wouldn’t cause pain, no one followed up. I will have my husband drive me just in case that can’t go through my neck again

  • #20124
     Beverly 
    Participant

    My right heart Cath is this upcoming Friday, they told me to fast but nothing about no deodorant or makeup. What has been your experience with pre-procedure recommendations?

    • #20142
       Brittany Foster 
      Keymaster

      Hi Beverly,
      I have had both and did have a lot of pain at the neck site afterwards. Do you know if you are going to be sedated or if you are going to be up for it? I have been up, alert and exercising during one of mine and it was honestly not fun because I had a lot of scarring from past caths and procedures in my neck so I felt the catheter as it was in there and it must have been on a nerve or something because it was pretty bad pain. They DID have all the necessary medications on hand though and ended up giving me enough pain meds where I was feeling good but could still follow commands. I would make sure to ice the area and ask the doctors about heat too and when that can be used. I alternated heat and cold because one helped relax the muscle and the other helped with swelling. I took extra strength tylenol with percocet for a few days after so make sure to ask for medication if you feel like you need a few days worth! Please be sure to keep us updated. Wishing you all the best!

      • #20187
         Beverly 
        Participant

        Thanks Brittany!! They said they would go through my neck, I don’t know if I will be up. It’s only my second right heart cath in 15 years so I shouldn’t have scar tissue, I hope. I didn’t even think about meds to go home with, thank you! I will keep you posted! Very anxious to finally get some answers.

      • #20217
         Brittany Foster 
        Keymaster

        Beverly ,
        I get what you mean. It can be anxiety provoking for sure but it is also better to know what it going on and that way they can get you started on a treatment plan hopefully ASAP. Please keep us updated on the results and we will all be thinking of you!

  • #20129
     Jen Cueva 
    Participant

    Hi Beverly,
    Yay! I am so happy that you will be having your RHC this Friday. I hope and pray that it gives you and your doctors some answers.

    As far as attitude, I usually wear work out clothes, something loose and comfy. I am not sure if they will go in the groin, neck, or wrist. I have had both the neck and groin.

    Deodorant is fine. Make-up is up to you, you will be hopefully going home to rest afterward. I do want to mention, shave your groin area if needed. If not, they will as they are prepped to do that with an electric razor. (Sorry if this is TMI)

    Otherwise, try to relax, wear comfy clothes and shoes and you should be set. Please keep us posted and know we are here for any questions and support.

    • #20136
       Beverly 
      Participant

      Thanks so much Jen, they are going to try going through my neck, I had one about 15 years ago and it was through the groin, so maybe time to go buy some sweats! I appreciate your Input.

      • #20159
         Jen Cueva 
        Participant

        Sweats are great, Beverly!

        I will be sending you positive vibes for Friday. Keep us posted.

  • #20201
     Joyce Sandberg 
    Participant

    I only had one right heart cath. It was given through the neck. No pain just pressure. I did not take meds prior to and was in and out the same day. I was 76 years old at the time.
    While on the table a test was given to determine what meds were best for my PH (CTEPH). Adempas was the one chosen along with Eliquis for life and oxygen 24/7.

    • #20215
       Brittany Foster 
      Keymaster

      It’s good that you were able to get the medication treatment along with your right heart cath. I know of other people who have had different types of medications tested out on them while they were getting the procedure done and IV medication to see how exactly they responded to it. Have you still been on a combination of these therapies? I’m sure you and your doctors both know what ones work the best for you and your body and the particular condition that caused yours.

    • #20244
       Jen Cueva 
      Participant

      Hi Joyce, thanks for sharing your heart cath experience. Many patients are tested for medications while they are doing this procedure. I am happy to hear that worked for you.

      I am glad to hear that you had no issues.It certainly does cause some pressure, that is for sure.

      I am curious like Brittany if you are still on his same treatment plan. I am also interested to know about how long ago this was. You mention you had only one, I know for myself, I have had a ton. I realize that all doctors are different as patients are, too.

  • #20831
     Beverly 
    Participant

    So I thought I Iam even more confused then ever after my RHC. When the dr was in the middle procedure he came over and said great news no pulmonary hypertension, I just have one more test to run with the water stress test. I am assuming it’s saline into the pulmonary artery? So he starts and I start feeling tons of pressure and a strange taste in my mouth. He said can you feel that, I said yes. He said I wasn’t supposed to and said he would do it just one more time, this time there was pain, a lot of pain, an he proceeded to do the test 2 more times. I start shaking on the table and he comes up to me and says it should go away in 15 minutes. I had to breathe through it, luckily one of the techs was cracking jokes, that helped. So it took almost a week for the chest pains to ease they never go away, the chest pain is the exact pain I had come into the doctor two years ago for. It was good though to finally make a connection to the pain. Except I haven’t heard from the doctor in two weeks! So I have no idea what happened. Sent him an email today for some explanation. Anyone have similar experiences with chest pain during a RHC?

    • #20837
       Brittany Foster 
      Keymaster

      Hi Beverly,
      I don’t have any experience personally with the water being used during the heart cath. I wonder what they were testing for when they did that? That would definitely be a good question to ask, especially if that is a sensation that shouldn’t be happening. Although I haven’t had the water done, I definitely have had a lot of sensitivity and pain in my chest while getting the heart cath and also a lot of pain at my neck. I realized after that my arteries and veins branch off differently and there was also compression from scar tissue and my arteries that are not formed correctly at the top of my heart around my pulmonary artery. When this was released during my last heart surgery, I had a lot of relief with my breathing symptoms. Although sometimes my oxygen levels are still low with activity to the point where I definitely benefit from some oxygen use.

    • #20843
       Colleen Steele 
      Keymaster

      Beverly, I never hear of the water stress test either. Do you happen to know the exact name of it? I would like to read up on it.

      You can experience chest discomfort after a heart cath but anything more than muscle discomfort be sure to tell your doctor. Warm compresses like a heated rice bag often helped my son during recovery.

      • #20848
         Brittany Foster 
        Keymaster

        I agree, Colleen!
        The heat always helps me a lot more with the soreness vs the cold! Helps more to relax the muscles !

    • #20858
       Jen Cueva 
      Participant

      Hi Beverly,
      I’m sorry that you had to endure so much pain from your heart cath. I am unsure of the water test, but I do know there is an exercise-induced stress rest for those who cannot do the treadmill. They inject a medication, like adenosine that affects your heart like exercising. This test can be very uncomfortable. I know the first one I had years ago I thought I was going to die on that table. The newer medications they are supposed to be easier and I’ve had it once with a newer med and it was far from my first exp. Plus it was a short test, thankfully.

      That test and the ” bubble echo” is the saline injection when they check for holes in the heart to put it simply. But. That’s not a stress test.

      I hope that your chest pain resolves and I’m sorry you had to endure that pain and no real answers. I would certainly try and contact the doctor, some soreness or pain is often part of the heart cath. But for me, it resolved after a few days. Heat packs and OTC pain meds help. ( if approved by your doctor)

  • #20841
     Jimi Mcintosh 
    Participant

    Never heard of this water procedure. Familiar with NO2 and gas infusions to
    determine how well your body processes
    O2, CO2.
    I am sorry that you had to endure this test and the lingering pain. The dual heart cath has been the most painful, but it yielded results, and the pain lingered for almost 3 months at both sites in my groin.

    When playing high school football, coach
    Always said “no pain, no gain”.

    • #20847
       Brittany Foster 
      Keymaster

      Jimi,
      “No pain no gain is right!” My nana always said to us, “gotta go through pain to be a beauty”, she said this in the context of brushing our hair and from all the snarls we would just scream at her while she was doing it lol! But I have heard the no pain no gain motto too. And it’s true that we must endure some pain in hopes of getting some better results and help !

    • #20859
       Jen Cueva 
      Participant

      So true, Jimi, ” no pain, no gain”, certainly is relatable in our world.

      I just had the dual heart caths earlier this year and it makes it tough when both sides are sore. Often, when they go in and ” irritate” things, I find it can cause soreness, pain, and palpitations a few days for me.

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