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    • #22984
      Brittany Foster
      Keymaster

      One of our members @marsha-badanes states: “I started taking Adempas and Opsumit in August and had a lot of side effects. I also take Coumadin. Long story short – in November I had titrated up to 2.5 Adempas but also started to feel very bad. November and December were disasters – I couldn’t breathe even with O2, I had such stomach upset I was eating very little. Then on 12/27 I passed out and had other emergency signs and went to the ER. I had severe anemia, low hemoglobin and had lost two units of blood NOTE: I DO NOT BELIEVE THIS WAS RELATED TO MY MEDICATIONS, but it has set me back to a year ago. I failed my 6 minute walk two weeks ago, and my pulmonary hypertension has increased 8 points. Anyway, I’ve decided to go to UC/San Diego for the balloon angioplasty and am wondering if anyone else has been there for treatment and 2) anyone else has had BPA treatment – did it work? How difficult was it? Many thanks for any input.”

      To the members that have been on these medications, have you noticed similar side effects? Also, share your experiences with balloon angioplasty as treatment for PH. Any input will help !

    • #22990
      V.R. Peterson
      Participant

      @marsha-badanes, my son had two BPAs at UCSD. Each time, he stayed in the hospital overnight afterward. The stay after the BPAs weren’t because of complications (there were none), but so the medical team could take care if it if complications happened. The recovery following his BPA procedures were much easier than recovering from his PTE surgery. Afterward, he was able to fly home to Utah. You can read about BPA at UCSD here: https://health.ucsd.edu/specialties/cardiovascular/programs/pulmonary-vascular-disease/Pages/bpa.aspx

      My son took Adempas and Opsumit before his surgery. Both upset his stomach quite a bit. In some patients, those side effects reduce a few weeks after each titration up. It didn’t with my son. He’s glad to not need those medications any more. He’s currently on Sildenafil and Warfarin. He was no longer in heart failure 6 months after surgery. The BPAs were to prevent the heart failure from returning. Most people who are already in heart failure will need more than two BPAs.

    • #22992
      Jo Ann white
      Participant

      I had a bad reaction to opsumit…was taking with tadalafil for 22 days. Oxygen needs increased dramatically especially at night and I didn’t connect the two at first. However when I stopped opsumit went back to where I had been. I know the combination works well for many people but not for me.

    • #22995
      Brittany Foster
      Keymaster

      @mamabear007 I think it is great that your son was able to have the success that he did with that procedure. It is always best to stay on the side of caution following any procedure (whether it’s major or smaller) because you just never know what could come from it. That’s great that he was able to get on a plane ride back home so quickly after and that he had success with it helping the heart failure. Do they anticipate that he will need any more of these type interventions in the future? I am sure this is something that they monitor for him.

    • #22996
      Brittany Foster
      Keymaster

      Jo Ann, I think it’s so important to remember that certain combinations of medications and treatments don’t always work for everyone. Sometimes I find myself getting frustrated that others have such good results with taking medications and I just don’t. That’s when I have to remind myself that every BODY is different and that’s why it probably doesn’t work as well for me. Treatment plans really need to be individualized for each person and how they react to the medications and combination therapies.

    • #22999
      V.R. Peterson
      Participant

      @brittany-foster, my son will likely need more BPA procedures in the future, but not until his RH pressures start increasing. They’re currently 27, slightly elevated, but not enough to cause heart failure. The doctors at UCSD expect it to be a long time before that happens — and by then they expect the technology to be even further advanced than it is now.

    • #23016
      Brittany Foster
      Keymaster

      @mamabear007 I am glad that your son is doing well right now and that the pressures don’t seem high enough to have him at risk for heart failure or in heart failure. I know that must be some sort of relief for you to know that things are okay right now. It is always hopeful for me to think about the advances in science that are happening every day. When I think about the difference that just 5 years time can make it really helps me to hold on through the difficulty.

    • #23039
      Janet Barry
      Participant

      Thanks for all the great info. I took a stress test on Tuesday and I’m waiting to hear from my interventional cardiologist’s office to have an cardiac cath. Is there anything I should be aware of?

    • #23042
      Colleen Steele
      Keymaster

      @jbarry28 I thought the best way to answer your question was to find a good resource for you. My son has been treated for PH and received his transplant at Stanford so I turned to their website for information.

      This link explains well what to expect before, during and after a heart cath. I’ve lost count of how many my son has had over the years. The main thing I would plan on is taking it easy for 24 hours after the cath. There usually isn’t serious pain but you will feel uncomfortable.

      I hope this helps.

      https://stanfordhealthcare.org/medical-tests/c/cardiac-catheterization.html

    • #23045
      Brittany Foster
      Keymaster

      @jbarry28 The best thing to do is honestly take it one step at a time. All of the information can get extremely overwhelming. I would wait until your doctor lets you know what that next step is for you. There are so many different ways that they can do the heart cath and what they would be looking for during it. Some get medication treatment during the cath to see what works and doesn’t work and some get the medication after and have to be hospitalized. I think it would all depend on the results and what specifically they will be looking for during the next procedure based on the results of the test. Be sure to keep us posted !

    • #23052
      Janet Barry
      Participant

      Thank you Colleen and Brittany. Great information. The website was very reassuring. Take care all. Good thoughts and prayers to everyone.

    • #23053
      Brittany Foster
      Keymaster

      @jbarry28 our thoughts and best wishes are with you too! I am so glad that the forums and this discussion has been helpful for you. That is certainly our goal here. Glad the website was also a good resource. I feel like if I do too much google searching I get overwhelmed.

    • #23069
      Colleen Steele
      Keymaster

      @jbarry28 I’m happy to hear you found the information helpful. I will keep you in my thoughts and prayers. When you proceed with the cath update us when you feel up to it. I’m sure it will go well and most important, will provide your doctor with important information and inspire a treatment plan.

    • #24034
      Libby
      Participant

      I am so happy I stumbled upon this post. I am queen of balloon angioplasty and have yet to find ANYONE else who has had one as regular treatment for their PH!

      I have been having balloon pulmonary angioplasty’s since I was a kid. I have had 4 so far and will be making it 5 shortly.

      So for me, the procedure is very simple and relatively painless. I go in and am put under completely and they do the ballooning, I stay over night one night and go home the next day. I limp around for a day or so and then that’s it. Total recovery time is maybe 4 days max?

      Here are the cons and I say this not to scare you but to be honest. Depending on how severe your narrowing is, it can takes HOURS. Mine has taken up to 8 hours. However, my narrowing is severe and also my arteries are VERY hard and callous. I have also had tearing, it is a risky procedure. My 8 hour surgery was because they tore an artery and I was bleeding out. That was years ago and they have been putting off doing it again for that very reason. They will not do them on me unless they have to.

      Honestly I rarely can tell a difference after. My cardio abilities are a little better. Usually they have to repeat every 4 to 8 years due to the arteries shrinking back.

      For me, this is my only treatment option for PH. I do not qualify for any medication. My doctor says that most of the PH medication lowers her ENTIRE systems blood pressure. not just your PH. My overall blood pressure is already too low and I have bradycardia so I can’t stand to have my BP lowered anymore.

      • This reply was modified 2 months ago by Libby.
    • #24045
      Brittany Foster
      Keymaster

      Hi Libby,

      Thank you for sharing this information. I know it is helpful for others to see people who have been through this. It sounds like you have had a lot of experience with this type of procedure for your PH treatment. That’s interesting that they have been doing this since you were younger. I can see why they would want to repeat it every 4 or so years, especially if things are growing or if there ever is any occlusion happening. Have you ever had any blockages that required care and stenting?

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