This topic contains 25 replies, has 6 voices, and was last updated by  Jen Cueva 3 weeks, 2 days ago.

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  • #20134
     Colleen Steele 
    Keymaster

    A pulmonary embolism blood clot can lead to pulmonary hypertension and vice versa. Have you experienced having a blood clot and if so, was it discovered pre or post PH diagnosis? How was it treated and are you taking an on-going preventative treatment? It would also be helpful if you can share the symptoms that you experienced and how the clot was discovered.

    Here is a brief article explaining the concern of a pulmonary embolism and PH.

    http://pulmonaryhypertensionrn.com/living-with-pah/pulmonary-embolism-and-pulmonary-hypertension/

     

  • #20164
     Jen Cueva 
    Participant

    Thankfully, I have not suffered any blood clots/pulmonary embolism. I know several people who have PH due to blood clots. They often travel to San Diego to have PTE surgery.

    I also had a good friend who does not have PH have blood clots. This came on for her out of nowhere. I visited her at the hospital. They only kept her a few days and sent her home on blood thinners. They told her that she may be on those 6 months or maybe for life. It would depend on her follow up labs. She is now 2 -3 months post-hospitalization. She is still on her blood thinners and not had any further issues, thankfully.

    This certainly can be a scary situation and fatal if not addressed.

    • #20165
       Colleen Steele 
      Keymaster

      Jen, thankfully my son hasn’t had an experience with blood clots but he has had friends who have struggled with them. It’s watched for very closely post transplant.

      I did a little researching of this and if I’m reading some of the articles right, it sounds like PH can develop from blood clots. When monitored and caught early it can be stopped once the blood clot is gone? Have you hear of this happening to anyone?

      Blood clots are very serious. I know both pre and post transplant that has always been something doctors want to rule out first before considering other things.

      • #20175
         Jen Cueva 
        Participant

        Oh, Colleen, I am sure they do monitor this closely post-transplant. I hate to hear that your son has many friends who have dealt with clots. I am thankful that he has not.

        Yes, I have heard from PH patients who developed it from clots, that they had PTE surgery and that took care of their PH on most occasions. I have heard some have this surgery and still not totally free of PH. It is quite interesting.

        This is certainly a serious condition.

  • #20199
     V.R. Peterson 
    Participant

    My son’s PH is caused by pulmonary embolisms. It’s known as CTEPH, Chronic Thromboembolic Pulmonary Hypertension. In 2017, he had PTE surgery at UCSD to remove many of the clots and scar tissue. The surgery vastly improve the quality of his life.

    • #20212
       Brittany Foster 
      Keymaster

      I find it truly amazing that the doctors were able to locate the cause of what was going on and were able to act on it and treat it accordingly. That’s so great to hear that you son’s symptoms were improved after the surgery and that the quality of his life was improved too! Glad it was caught when it was! Just curious, did blood markers for blood clots come up high? How were the clots first discovered for him?

      • #20221
         V.R. Peterson 
        Participant

        My son doesn’t have any blood markers. We don’t know why he got clots. VQ scan is the gold standard for detecting CTEPH; it measures air and blood flow through the lungs. It took 2 years after his PH diagnosis to get the CTEPH diagnosis, as the first VQ scan was blurry. The second scan was much clearer and a definite positive.

        Since surgery, his heart has shrunk to normal size. He’s no longer in right heart failure.

    • #20220
       Colleen Steele 
      Keymaster

      @mamabear007 how much risk is your son in of developing more clots? Is treatment preventing the progression? It wonderful and amazing how surgery was able to improve his quality of life. I apologize, I remembered that your son has battled with blood clots but I missed the fact that it caused his PH.

      • #20222
         V.R. Peterson 
        Participant

        @colleensteele, as long as my son stays on Warfarin and keeps his INR within therapeutic levels, he shouldn’t throw any more clots. In addition to Warfarin, he’s also on sildenafil to prevent heart damage from the distal clots they couldn’t get during the PTE. UCSD also did two BPA (Balloon Pulmonary Angioplasty) procedures to open up a few more veins. Unless his condition worsens, that should be enough.

      • #20224
         Colleen Steele 
        Keymaster

        That is good news @mamabear007. Your son has had quite a journey, hasn’t he? I enjoy hearing your updates about him and how happy his life has turned out. My son’s quality of life improved a great deal when he started sildenafil. He remained on it for 5 years until transplant.

      • #20228
         V.R. Peterson 
        Participant

        @colleensteele, it’s amazing what a difference a few years can make when it comes to this horrid disease. Every time I read about how much better your son is doing post transplant, I do a tiny fist pump for him. It really does help to hear the triumphs of others. <3

      • #20230
         Colleen Steele 
        Keymaster

        Thank you so much @mamabear007. I became a forums moderator and columnist for PH News because I want to provide support and encouragement to others, and I have received just as much in return. It’s been a pleasure getting to know you and all our other inspiring members.

      • #20245
         Jen Cueva 
        Participant

        Colleen and @mamabear007, I enjoy reading your experiences with your sons. It makes me smile at how much I learn and am in love with the fight you both share when talking about your sons. I am sure that you both connect on so many levels. It is truly amazing how much you can bond with others online.

        I learn from you both, one, about unconditionally love that you both share and the heartaches and celebrations as you share your stories. You both are amazing mothers and I know each of your sons are lucky to have you. I know as young adults, you may not hear that as often as you should.

      • #20277
         V.R. Peterson 
        Participant

        Thank you, @jenc. I’ve always felt I was lucky to have him as a son. Oh the trouble he’d get into, but we couldn’t help but laugh at some of his antics.

      • #20283
         Jen Cueva 
        Participant

        Isn’t that the best part @mamabear007? Laughing at all those antics and thankful you have each other and made it through.

      • #20285
         V.R. Peterson 
        Participant

        Definitely is, @jenc. Like the time my sister gave him a set of real tools for a Christmas gift (I think he was 6 and really liked to build things). He decided it would be fun to take his bunk bed apart! Luckily, my older son caught him before he removed too many screws.

      • #20288
         Jen Cueva 
        Participant

        Oh no, lol – I probably enjoy these stories even more because I grew up with 2 sisters. My hubby is one of 3 boys so I’ve heard some crazy antics from my late mother- in -law.

        I always reminded her everyone made it to adulthood, that’s the important part. I know they had many broken bones, etc…My hubby would have been the ” tool man”. He was and still enjoys taking things apart and putting them back together. Bless you.

  • #20200
     Joyce Sandberg 
    Participant

    Yes, bi lateral massive clots which led to my diagnosis of CTEPH after getting a right heart cath and VQ Scan. It took 6 months after to get properly diagnosed properly.
    I was very fortunate as I did not die from this event which does not usually have good outcomes. Enlargement of right heart was a result.
    Unfortunately, my scarring and residual clots are distally located so I am not a good candidate for the reveral (PTE Surgery). Nor am I a good candidate for BPA.
    My only choices are Oxygen 24/7, 2.5 Adempas, Eliquis for life.
    I was told that mild COPD was the initial diagnosis with CTEPH as a secondary result.
    Exercise is almost out of the question as my saturation levels drop dramatically when I move about.
    I try to remain as active as possible. I still drive, with the help of my refillable oxygen tanks I venture out to Publix, Winn Dixie, Walmart and any place that offers electric carts for shopping.
    When I travel to my Dr. (2 hours away), we stay overnite and I bring my life saving equipment (Sequal, Eclipse auto sat5, plug in room for sleep, plug in car for continuous charging, and carry it on my Pride Go Go Scooter when visiting my Dr.
    My husband is my mechanic to put together my scooter whenever we are together. When I am alon driving I cannot utilize the scooter or Eclipse (too heavy), so I use the small cannisters which I refill as needed.
    My oxygen supplier provides me with an Invacare 10 ltr. refillable unit which serves me well.
    From my understanding, liquid oxygen would be the best choice as far as longer lasting and lighter in weight, however, it is not available from my supplier.

    • #20213
       Brittany Foster 
      Keymaster

      Hi Joyce,
      In a way it must have been a good thing to finally get some type of diagnosis so at least you could know what you were up against. I’m sure you had your share of symptoms before being officially diagnosed. That period of “waiting time” in between diagnosis can be very scary and the unknown is what really gets to a lot of people. I am glad that you are trying to get around the best way you can and still finding ways to be as mobile as possible even if that means using some assisted devices. I am grateful that you have these life preserving measures and that you are taking the best care of yourself! That’s so important!

    • #20227
       Colleen Steele 
      Keymaster

      @joyce-sandberg thank you for sharing your experience. Those must have been really scary times for you and your husband. In reading what you and @mamabear007 has shared, it’s amazing my son never experience an embolism. His right heart was so severely enlarged for most of his life. I’m understanding better why we would often hear, “We need to check for blood clots,”. I’m sorry that you did go through the experience and thank God it was caught in time!

      • #20229
         V.R. Peterson 
        Participant

        @colleensteele, was your son on blood thinners before his transplant? The doctor had my son on Warfarin for a full two years before he got his CTEPH diagnosis, when they thought it was “just” PH. I don’t know if blood thinners are standard treatment for PH, or if it’s usually for CTEPH patients.

    • #20246
       Jen Cueva 
      Participant

      Wow, Joyce, it sounds like you have been through quite a scary journey. I know that receiving a diagnosis is important, so I am happy to hear that you have some knowledge about your diagnosis. Although it still is not an easy journey, it sounds like you are doing the best that you can. I applaud you for doing that.

      Every day is a new day, I find when I use my oxygen as I should and also motorized carts on the tougher days, that I am better off. It has taken me years to get to this point, but I know taking advantage of these assistive devices can make my days better.

      Thanks for sharing your experience. Blood clots are dangerous and I know many who continue the blood thinners for life, as you mention. It is helpful that they have so many new ones now that do not require the constant blood tests like Warfarin(Coumadin) did back years ago.

  • #20233
     Margie Novak 
    Participant

    Yes, it was December and I was home with my dad. My sister was not here but on her way back from Philadelphia. I started to cough up blood when I was doing house cleaning. I kept going though… and when my sister came home (5 hours later) she said the bathroom had blood everywhere and that I had to get to the hospital. Called the ambulance, they took me to one hospital and then had to life flight me to another hospital. Was admitted and am alive today! Some times you just don’t want to face what is wrong with you. I knew it was probably bad but in denial. Thank goodness for life saving doctors! Hang in there everyone!

    • #20235
       Brittany Foster 
      Keymaster

      Margie,
      I can imagine how scary this really must have been for you as well as for you sister who saw you in that state. Did you try to ignore the symptoms when they were happening? I am glad that the doctors were able to flight you and get you to a hospital with the best care equipped to handle the seriousness of things. Also glad that you are with all of us today because of the medical interventions and treatments you received. Very thankful for that!

    • #20247
       Jen Cueva 
      Participant

      Oh, Margie, that was horrible. I cannot even begin to imagine how scary this must have been for you. I am glad that the medical staff and interventions were able to save you and you are here with us today. I am so sorry that you went through this.

      You are right, we often do not want to give in, even when we know something may be off. Is this how you felt? Or did you feel a ton of symptoms before this happened and ignored them?

      • #20250
         Brittany Foster 
        Keymaster

        This is always the hardest part for me because on one side of my brain my symptoms can be bad enough where I’m like “I should probably call the doctor about this and get their input on whether or not I have to go to the hospital” Then on the other side of things I can be like “I NEED THE HOSPITAL NOW!” and then the stubborn side of my brain takes over like “nah, wait awhile” this is the conversation I always have in my head. Sometimes I end up having to just go to the doctor or call the doctor and let them make the call because I seem to really struggle with this, especially because of all my trauma I have experienced in the hospitals lately, I’m like a stubborn kid that doesn’t want to go to school LOL! I’m like “NOPE, NOT GOING!” but my body is like “girl, get it together!”

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