This topic contains 64 replies, has 11 voices, and was last updated by  Colleen Steele 1 month, 3 weeks ago.

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  • #18509
     Brittany Foster 
    Keymaster

    I was born with a large hole in the heart that caused me to have PH as a newborn because of the blood shunting in the heart. I had heart surgery to repair my defects just a month after my first birthday. Since then I have learned that congenital heart disease is not something that just goes away with surgery. I have since had a pacemaker implanted because of a syndrome called “sinus node disease” which basically means that the natural beating of the heart is not in sync for me so I am pretty dependent on the work of the pacemaker that helps conduct “normal” beats. I also had a bypass surgery due to vascular abnormalities and had a major heart surgery a few months ago.

    I have read a lot of forum users on here who have either electrical abnormalities with their heart, structural heart disease, acquired heart disease because of the pressure being put on the heart, right sided heart enlargement, heart failure etc.

    I am being managed for my heart conditions by a specialist in the electrical rhythm of the heart, a cardiologist specializing in congenital heart disease in adults, a vascular surgeon and vascular specialist and cardiac surgery team. It will always be a combo of medications, surgeries, procedures, interventions, and a healthy lifestyle that helps keep me heart as strong as possible.

    Who here has co-existing heart conditions either congenital or acquired? How are you being treated and managed for this? Does your PH specialist also work with your cardiac team?

  • #18516
     Kimberly 
    Participant

    I have PH with CHF and Diastolic Dysfunction. I also have Hypokalemia because my body can’t retain potassium, magnesium or phosphorus.

    • #18528
       Colleen Steele 
      Keymaster

      Kimberly, how are these co-exisiting conditions managed with your PH. My son also had serious Long QT Syndrome and it sometimes complicated treatments and made surgeries and procedure that much more risky.

      Brittany, my son was always followed by his PH specialist, cardiologist and transplant team and they all worked together to keep him well. His right heart was severely enlarged by the time he was diagnosed and he had Long QT and Mitral Valve Prolapse. Later he went into heart failure and at that time milrinone was added. He was one of their more complicated patients but somehow all of his conditions were managed well together.

      • #18546
         Brittany Foster 
        Keymaster

        Colleen,
        I’m glad they were able to get him managed and work together ! That’s so important, especially finding a care team and center that is good at ALL the above. I’m glad that they continue to do what is best for him. I know it can be hard for providers when there are more than one conditions going on that is contributing to the other/s

    • #18544
       Brittany Foster 
      Keymaster

      Kimberly,
      It really sounds like you have a lot on your plate with all of those conditions. Are they thinking that the CHF is being caused by the PH or did one happen before the other? Sometimes it’s hard to tell because they both put strains on each other and go hand in hand sometimes. That must be hard not being able to absorb those nutrients and electrolytes. What do they do about this? Do you have to get infusions of anything?

    • #19212

      I have PAH and CTEPH. I also have right sided heart failure. I also have central and obstructive apnea. I have sciatica and chronic back pain. I am obese and I am trying to lose weight.

      • #19224
         Colleen Steele 
        Keymaster

        Christopher, I am so sorry to hear that you are dealing with so many symptoms. My son was also in right heart failure and just like him, it may be contributing to your back pain. Heating packs were his best friend and even electric blankets helped too. It’s summer though and that probably doesn’t sound appealing. The other issue with heart failure is water retention and you might be finding that a challenge while trying to lose weight. Don’t give up on it though. Keep trying to eat healthy and whatever else your doctor gives you permission and advice on doing. I hope as the weather starts to cool down some of your symptoms might improve.

  • #18537
     Jen Cueva 
    Participant

    I have PH as well as congestive heart failure. I first had CHF from living with uncontrolled PH. My CHF has improved but it’s an ongoing struggle. It never really goes away when you love with PH. My heart still shows an enlargement. I take any improvements that I can get.

    Before my PH doctor was a pulmonary doctor so I had him and a Cardiologist. Now that my PH doctor is cardiology, my PH team takes care if the PH and heart issues. Their cardiology group has about 25 doctors specializing in many different areas. I feel like I am covered as far as heart issues here, lol

    • #18545
       Brittany Foster 
      Keymaster

      Jen,
      That’s really good that you go to a clinic that covers both. My PH specialist was also a heart failure specialist and cardiologist so it was helpful to talk about both things at one appointment vs going to multiple specialists and trying to tweak medications or something. Do they have you more stable on medications specifically for your heart or do they try to manage the PH and therefore help the heart more? I am on mostly heart medications because my PH is mostly from the heart and vascular issues vs an underlying lung condition

      • #18552
         Jen Cueva 
        Participant

        Yes, it’s easier to address both issues at one appointment. They usually treat my PH more, but as you know the diuretics are part of the regimen for CHF as well. I was on a medication to help regulate my heart for several years but not anymore. That medication didn’t work well with some of my PH medications. I believe it was Amiodarone, I also was taking a blood thinner back then.

        Because my PH is controlled better than then, I’m no longer taking those medications. The doctor did say we may revisit this again after my next Echo. This is because of my palpitations and chest pain is visiting more often. I’m hoping it’s just the heat and trying to balance this fluid and extra diuretics.

      • #18568
         Brittany Foster 
        Keymaster

        Hey Jen,
        I’m sorry you are having some palpitations and chest pain. That is so unpleasant and always makes me nervous when I feel pain in the chest because I never know what the source is. Sometimes it is just inflammation, other times I have a cough with it and worry about pneumonia or bronchitis. Other times like you said, it has to do with the weather putting extra stress on the body and just having to work harder through the day. It is hard to tell exactly what is going on and that always just leads to more worry and anxiety (which sometimes increases the chest pain too so it’s a vicious cycle). What are you doing to help relieve some of those symptoms? Hopefully you are a little more comfortable today!

      • #18596
         Jen Cueva 
        Participant

        Thanks, Brittany, I’ve been on the couch. I’m testing with my O2 and taking my Morphine as needed to try and help the chest pain. Yes, it’s so scary and frustrating as we never know the exact cause. My PH doctor did call to check in me yesterday. The plan was to follow the plan and all weekend and if I don’t get any relief, go to the hospital. I prefer to stay home, as long as the meds can offer a little relief.

        The worrying and anxiety don’t help, as you know all too well, also.

      • #18625
         Brittany Foster 
        Keymaster

        Hey Jen,
        How are you doing this Monday morning? Wanted to check in with you. I know that your response to this sounds like you have been having a rough time. Do you think that the weather is also impacting this? Personally, the weather made me feel a lot worse this weekend. It increased a lot of the vascular pain that I’m having and also increased my chest pain because I think my heart and lungs just get too tired in these conditions. It is much better to stay inside and rest in the A/C and watch a good movie or show on Netflix or Hulu. How did you pass your time this weekend? Hope you LISTENED to your doctors orders and took your pain medication and just “took it easy” whatever that looks like for you! I know you’re one that probably likes to stay as busy as possible.

      • #18637
         Colleen Steele 
        Keymaster

        Jen, I’m really sorry to hear that you have been dealing with chest pain! That was always a big symptom for my son. I can remember trips to the hospital with him doubled over in pain. How are you doing today? I know we often delayed going to the hospital because there was rarely anything that could be done but eventually we would always go. If anything, as much as we wanted to be home, the hospital relieved some of the stress. Knowing he was in a place where he could be sufficiently monitored and treated made it less scary. Does that make sense?

        I’m probably not helping. Just want to express my concern and hope that you start feeling better this week!

      • #18641
         Brittany Foster 
        Keymaster

        Colleen,
        That makes complete sense to me ! It is unsettling to sit with symptoms when we are in pain and a lot of distress. As much as I don’t like going to the hospital, when I think it is best that I’m monitored, I eventually feel more at ease too knowing that I am in good hands and knowing I’m in a place where it would be the safest IF something were to happen (God forbid) But I totally relate.

      • #18649
         Jen Cueva 
        Participant

        Yes, I agree, Brittany! It may be ” just part of PH” as they often say, but usually, once it gets too rough, I will give in and go.

      • #18648
         Jen Cueva 
        Participant

        Colleen, I did talk to my PH nurse this morning and they are wanting to do a left heart cath. Last year, they saw something they wanted to investigate more on my RHC. But, because of my kidneys, I could not have the contrast to do the scan they wanted. My new PH doctor wants to be sure nothing else is going on.

        Unfortunately, my kidney function still is the reason we can’t do the scan, so sometime this week, I will be going for the left heart cath. I’ve had both early in its diagnosis, but haven’t had the left side in years. Do y’all have left heart caths or right side only?

        My hubby is home again today with me, if the chest pains and palpitations get worse, he will take me to the hospital. That was instructions per my PH nurse, too. I know I rather ” wait it out” at home but if it gets too much, I’ll go to the hospital.

        Thanks for the support and concerns.

      • #18652
         Brittany Foster 
        Keymaster

        Jen,
        I am thinking of you through this time. I know it can be hard. Hopefully they are able to get that left heart cath done quickly and will be able to figure out a safe way to do other testing if need be. Waiting around in pain just isn’t fun, especially if we are left to our own devices to manage it. I usually end up not taking ENOUGH or getting paranoid about taking medications for pain that I end up doing myself a disservice. I hope that you are able to stay as comfortable as possible right now. You need to just rest and let others take care of you right now. I know it is hard to just feel like this. Stay distracted with positive distractions (and if that includes being on the forums then type it ALL OUT!) you can do this ! Keep us updated on what they say!

      • #18676

        I have had two right heart cath’s. My third will be this September. This one will go along with the usual tests. This is to see if I need a third med which will be uptravi if it’s needed. I have had a minor miracle in that within this last year my CHF and enlarged right side of my heart has not only gone back to normal size my CHF has subsided my Dr’s say. My pressure in my last right heart cath was 35 down from 52. My main issue is i am struggling with losing weight. I have lost 80-100 lbs and I keep yo-yoing a bit. I need to keep losing weight.

      • #18682
         Brittany Foster 
        Keymaster

        Christopher,
        Wow it seems like you have put in tons of work to try to be in the best health possible! 100 lbs really is a lot to have lost but I know that with a lot of weight loss there comes a point where you reach a plateau or begin to yo yo back and forth either up more or down some and then back again. Getting over this hump of weight loss will happen for you. Especially if you continue to stay as motivated to get better as you seem. Are you also working with a dietician? Perhaps someone that is familiar with the medications that you are on for your heart and lungs too?

      • #18692
         Jen Cueva 
        Participant

        Thanks, Brittany, I’ve been resting mostly. Today, I thought I would help make dinner, but of course, my hubby is helping.

        I am on the schedule to have the left heart cath(LHC) Thursday. Supposedly in the morning, but the cath lab will call me tomorrow to let me know what time we need to be there.

        Thanks for the support as always 🤗

      • #18709
         Brittany Foster 
        Keymaster

        Jen,
        I am so glad they were able to get you in so quickly for that! I will be thinking of you on Thursday and please keep us posted. you are such a big part of this community and I’m sure everyone will be anxious to hear about how you did. Feel free to private message me if you would like or if you need someone to talk to. Always here for you and hoping for the best and that they can figure this out and get you feeling a little better! (fingers crossed) sending you all the good vibes!

      • #18711
         Jen Cueva 
        Participant

        Brittany, thanks so much for your thoughtful and kind words. I’m happy that they were able to work me in this week, so I can get it over with lol.

        The support here in the forums is awesome and I’m so grateful to be a part of it. It’s like another family 💜

      • #18691
         Colleen Steele 
        Keymaster

        Hi @jenc, I only remember right heart caths. How are you doing today? I’ve been thinking of you and wondering if you ended up taking a trip to the hospital.

      • #18693
         Jen Cueva 
        Participant

        Hi @colleensteele, thanks for checking on me. I’m still at home, taking the pain meds and resting mostly. My LHC is scheduled Thursday.

        I am on the schedule to have the left heart cath(LHC) Thursday. Supposedly in the morning, but the cath lab will call me tomorrow to let me know what time we need to be there.

        Thanks again, I appreciate the support 🤗

      • #18719
         Colleen Steele 
        Keymaster

        Jen, I have my fingers crossed that it will be a go for Thursday and you will be in my thoughts and prayers!

      • #18725
         Jen Cueva 
        Participant

        Thanks, Colleen, I appreciate the positive thoughts and prayers.

        It’s difficult to try and figure out the cause at times. The pain can be ” just PH”, inflammation, or something else. My hope is that we get answers and a solution to help this ongoing chest pain and palpitations. Maybe something else that will work better for the pain, too, would be great.

      • #18726
         Colleen Steele 
        Keymaster

        Jen, you said that you are in heart failure, is that correct? Has your team discussed maybe putting you on IV Milrinone? That helped my son a lot. My other suggestion that sounds so simple but really helped him is when I would very gently rub his back. I think it would help relax and distract him from the chest discomfort. It would also sometimes help him fall asleep when struggling during the night.

      • #18730
         Jen Cueva 
        Participant

        Colleen, they actually mentioned the IV Milrinone early in my PH journey, my CHF was worse back then. The issue for me us that my blood pressure has always been low. They decided it would drop too low so that’s an option.

        Back rubs and shoulder rubs are helpful. I tend to have back and shoulder pain. It’s a ” free” side that comes along with the chest pain and palpitations. I have been using a warm pack too. Thanks for the tips, I’ll have my hubby rub me down after he’s home and rested from work.

      • #18740
         Brittany Foster 
        Keymaster

        Jen,
        I hope you were able to get that much needed back rub! I am thinking of you and know that you were in for your cath today ! my thoughts and positive wishes are definitely sent your way. Please be sure to keep us updated when you are feeling up to it. I hope for the best possible outcome and if worst case scenario and you get some crummy news, just know that we are always here for you and have your back! (Can’t exactly do the back rubs like your hubby can, but we can be there emotionally for you!)

      • #18785
         Jen Cueva 
        Participant

        Hehe thanks, Brittany, I feel like today I will need more back rubs.

      • #18744
         Brittany Foster 
        Keymaster

        Jen I totally can get it. It’s hard to really be a judge of where the pain is coming from and what’s causing it. That is always something that is a concern for me. Like, “is this a new thing or is this just part of what I have?” I HATE when they say something like “this is just how you are”… like “okay, then how are we going to MANAGE it so I have some better quality of life?” Pain management is so important, not only for physical comfort but for mental health too.

  • #18563
     Mandy 
    Participant

    I am new here!

    I am scared and so confused over this new diagnois off of my Echogram.

    findings:
    moderate mitral valve reg.
    Mild LA dilation
    Mitral valve prolapse
    and moderate Pulmonary Hypertension

    also have these related symptoms, sleep apnea, low iron (anemia) on top of everything else so I have no clue what is causing the PH if it is LHD, group 2 (which seems the scariest to me with low hope) need some reassurance here! I keep readying statistics and research studies how death is the highest in the group with no approval treatment? please tell me that is wrong?

    I could be part of group three due to sleep apnea or group 1 due to stupid diet pills back in the 80’s and 90’s but I am pretty sure its PH due to LHD my right side pressure is 40 which is moderate ph.

    Symptoms:
    edges of lips blue (for many years)
    left ankle swelling
    skipping and extra heart beat
    burning and dull pains around the heart
    dizziness
    but not really out of breathe although I am morbidity obese (which I had gastric bypass and regained the weight back)

    sorry just scared, lost, angry and confused and I am a single parent with a five year old. I dont know what I am looking for here. Maybe some hope, comfort and support! Any advise would be great.

    sorry for the long rant by my cardio is in Russian and the ECHO came back he signed off of it along with my pcp without notifying me of the findings. I found out through Mychart on the hospital website that I have moderate pulmonary Hypertension, I dont understand why my cardio would have saw the report and my pcp and not tell me the next step. I dont see him until the 29th of this month…. but I got proactively and got another cardio who specializes in my symptoms and condition for the 24th of this month.

    I am just so afraid he is going to say sorry there is nothing we can do for you!
    I am researching this disease almost every waking hour right now and it gets so confusing and scary. I just need some friends and suggestions! other than to stop googling, its just my nature I dont trust doctors to do the right thing.

    • #18569
       Brittany Foster 
      Keymaster

      Hi Mandy,
      I really empathize with what you are going through right now. I know that it feels like a lot to digest and take in and that’s because it IS A LOT to take in and have on your plate. The symptoms that you are sharing with us are definitely ones that would be unsettling, especially if you aren’t sure what is contributing to the problems. I also have a form of sleep apnea that happens during the day too called central apnea. I am supposed to be wearing a bipap for it. Are you using any type of breathing assistance at night or during the day like oxygen or cpap or bipap therapy? I think that the good things to focus on right now is that you have an upcoming appointment which will hopefully get you closer to some type of plan to get this more stable for you and make sense of what is going on. It is hard to be in this area of the unknown, but I am confident that with more answers you will feel more at ease knowing what you CAN do about all of this. In the beginning it is normal to feel like everything is beyond our control, but when you get a diagnosis you will learn that there are some things that we DO HAVE control over. We are all here for you!

    • #19223
       Colleen Steele 
      Keymaster

      Hi Mandy, I just want to check in and see how you are doing. As all of us know and understand, the initial diagnosis is so scary and overwhelming. It’s difficult to do but try and make some time throughout the day to do things that, if not take your mind off of things, at least help you to relax. Update us when you feel up to it. In the meantime, I am thinking of you.

  • #18581
     Libby 
    Participant

    I also have heart disease as the cause for my PH. I was born with ASD, VSD, pulmonary stenosis, pulmonary atresia, dextacardia, situs inversus, congenitally corrected transposition of the great arteries, absent pulmonary artery corrected by surgery with a shunt, absent pulmonary valve, pulmonary and tricuspid valve regurgitation at around 30% , and now PH. I’ve had 8 surgeries thus far. Two open heart, 4 ballooning angioplasties for the PH, one gallbladder removal and 1 heart cath to replace leaking pulmonary valve. Pulmonary ballooning will always be part of my PH treatment as I am not a candidate for any medication on the market. I will also likely have to have my Melody valve (replacement for the pulmonary valve) replaced AGAIN in 3 to 5 years because they do wear out.

    • #18583
       Brittany Foster 
      Keymaster

      Hey Libby,
      I can see why that is your main line of treatment, just wish you didn’t have to go through procedures every time to be treated for this ! It is hard to have to just “wait and see ” with grafts or valves because you know that eventually a lot of them will need to be replaced. They are watching my subclavian artery graft because it has over 50% narrowing in it. They keep a close eye on it with ultrasound every 6 months and I am just waiting for the day it needs to be replaced because that was a HELL of a surgery to go through. With CHD these things are unfortunately in the back of our minds a lot. I’m glad there is someone else on here with similar CHD that I can relate to. I know it’s tough!

    • #18677

      I have both obstructive and central apneas. I have never heard of day time central apnea. Mine is when I try to sleep. I say try because I now hate my Bipap as it no longer really works. My pressure prescription is nearly as high as the machine will go and it’s annoying. So I have to ramp up the pressure and it’s just not comfy at all. In fact it was amazing for 6 months then for the last year I just hate it…

      • #19213
         Jen Cueva 
        Participant

        Wow @christopher-cassata-bobby-shows, you definitely are dealing with several health issues. Although, it sounds like you’re working hard to improve some of these health issues. That is an awesome job with your weight-loss, despite your many health issues.

        I’m sorry to hear that you’re still struggling with multiple pain issues as well. Have you noticed any decrease in the back and sciatica pain since this weight-loss?

        I know you mentioned in another comment about issues with your sleep apnea, has that improved at all for you?

        I hope that you continue to stay motivated as you have been, you will continue to lose weight. I think all of us who need to lose or gain weight, come to a stalling point. Often, it is just something simple to help us over that point. Have you found that?

  • #18589
     Libby 
    Participant

    That’s exactly right Brittany! I hate the ‘wait and see’ approach too only because you know it’s inevitable and all the well-wishers in my life always tell me ‘maybe you’ll never need it done! Maybe your valve will last forever’. Honestly I hate it when people try to be positive about my health issues, only because it feels like a minimization when to me, it’s basically a waiting game for a looming surgery.

    • #18623
       Brittany Foster 
      Keymaster

      Libby,
      That response frustrates me too! or after the CHD surgeries .. “so, no more! you’re done!” like hahahahaha whattttttt????? I just always make sure to tell people before hand “this is not a permanent fix and I need like probably 10 more surgeries in my lifetime that require full sedation” so no, it’s never “done” . I can tell the people who DON’T have chronic health conditions that require surgeries and repairs by their responses. I wouldn’t wish my conditions on anyone, but that’s one piece I wish people would learn to understand and ACCEPT! Without other people accepting it, it makes it harder for me to do it.

    • #18786
       Jen Cueva 
      Participant

      Libby, it’s awful when others try to minimize your health issues, I, too, have this feeling often and remind myself that these same people don’t live in our bodies and have no clue what we deal with every day. That doesn’t make us feel any better.

      Maybe some of y’all will relate to this column post from our very own loved, Brittany.

      Column

      • #18831
         Brittany Foster 
        Keymaster

        Thank you so much for sharing the link to one of my columns , Jen! That is always my goal when writing these columns is to share with others because I KNOW I’m not the only one who experiences these things. I hope they help to give others a voice and to speak up for their medical care and their body!

      • #18860
         Jen Cueva 
        Participant

        My pleasure, Brittany! Your words are something that we all can relate to. I know that many will be motivated to advocate for their health after reading this. You’re such a special young woman who inspires me daily!❤️

  • #18591
     Ally 
    Participant

    Yes Libby that’s how it feels to me also, it’s like it’s easy for them to say. They have never lost their breath walking to the bathroom.

    • #18624
       Brittany Foster 
      Keymaster

      Ally,
      I feel you guys on this one! Some days I wish people could walk just a few minutes in my shoes. If it were any longer than a few minutes they would probably drive themselves nuts. We deserve more credit because we are able to keep it all together (well, for the most part!)

  • #18721
     Valerie 
    Participant

    Oh, your detailed questions and answers once again reminded me how little I know and understand about medicine and about my own illness in general.
    Since my childhood I was put “congenital heart disease: mitral valve prolapse”. This phrase was always my answer to the doctor’s questions, until they put PH (it’s was also made by a cardiologist). Therefore, I have been observed only by a cardiologist all my life. I’ve been to two or three different pulmonologists, but it wasn’t good. So my “PH team” are my cardiologist and ultrasound doctor. I still do not understand exactly what “prolapse” is, how it all looks and where it came from.
    And, yes, we are all very lucky that we are all here despite the PH and many related diagnoses. I’m surprised and very glad!

    • #18741
       Brittany Foster 
      Keymaster

      I’m glad that you’re here too! Were you give this diagnosis of mitral valve prolapse just recently or did you have it as a child too and that is why they are saying it is a congenital heart defect? Just curious because a lot of times when defects go undetected or untreated, depending on what the defect is, it can lead to PH. Here is some information from the Mayo Clinic (highly regarded hospital) about mitral valve prolapse if you wanted to take a look at it and read up about it.

      • #18777
         Valerie 
        Participant

        Brittany, thanks for the link! I read the article, and I think I’ll go through the clinic’s website. My prolapse was diagnosed right after I was born. No operations and such a never offered. Prolapse (seemingly) regard as the cause of hypertension (but I’m not sure). Once the doctor was explaining something about the fact that I have intertwined (and grown together, and between them a hole), two vessels coming from the heart (maybe artery and aorta?). I can’t say anything about it for sure. The explanation was complicated, and I was just scared and didn’t listen to half the words.

      • #18782
         Valerie 
        Participant

        Maybe I’m a little confused about what doctors write. The “interweaving of vessels” I wrote about is a “defect of the aorto-pulmonary septum” (I’m not sure if this is true in English). I searched for information about this, it is “the presence of the hole through which the aorta and the pulmonary artery trunk communicate with each other.” It is also a rare congenital heart disease and is the cause of hypertension. By the way, this diagnosis I also received only when I was about 20 years old, although (apparently) it was from birth.

      • #18815
         Brittany Foster 
        Keymaster

        Valerie,
        I know how this can feel when you are having things explained to you and it seems like everything that you are hearing is one big blur of information. it really helps me when I take someone to these appointments with me. You could also think about asking your doctor if you could record (maybe an audio recording with you phone) about what they’re saying so that way you can refer back to it and you won’t miss too much. Do you take other people with you when you go? Always helps to have any extra set of ears .

      • #18864
         Valerie 
        Participant

        Brittany, “one big blur of information” is a very precise definition. My mother goes to the doctor’s office with me, but she is too worried about me to listen to the information calmly and objectively. It’s not a bad idea to use an audio recording during a visit to the doctor. “I’m sorry, I’ll listen to your words later, when I become sane”. I imagine the doctors will be surprised at such a strange patient, lol.

      • #18870
         Jen Cueva 
        Participant

        Valerie, I had to laugh as I often think my medical team thinks that I am the ” strangest ” patient yet, lol

        You are NOT alone! I think that Brittany and Colleen offer some great tips.

        Some doctor appointments( well, most) can be overwhelming, to say the least, but I promised your doctors are accustomed to questions, nerves, anxiety, and tears.

    • #18804
       Colleen Steele 
      Keymaster

      Hi Valerie, I’m familiar with mitral valve prolapse because my son had it before transplant. He was actually diagnosed with the and Long QT Syndrome 2 years before being diagnosed with the PH. I was also have both…or so I thought. I also have both of these but in a much milder form than my son did. I was on a beta blocker for years for the mitral valve prolapse but only for my comfort because I would occasionally have some chest discomfort. Later I decided to go off of it because my condition was so mild and the medication was making me very tired.

      Everyone is different but for my son, the mitral valve prolapse was at the bottom of the worry list. The Long QT and PH always took everyone’s full attention. He was on a beta blocker for both the mitral valve and Long QT and I know that they did consider both conditions before starting any new medications.

      If you feel that you need more information about your mitral valve prolapse diagnosis there is nothing wrong with asking a doctor or nurse to go over it again. You can also ask them if they have a brochure on it that they can share with you.

      • #18816
         Brittany Foster 
        Keymaster

        Colleen,
        So true ! Brochures of a handout is always a good idea especially something that you can take home with you and go over after and digest a little bit at a a time. It’s too much to take in everything all at once. Pictures always helps me too and a print out of information so I can go over things and show others if they have any questions

      • #18863
         Valerie 
        Participant

        Colleen, I think for me (as for your son) prolapse is the last item on the list for concern. Especially when I am among those “lucky” who are lucky to have a rare defect of the aorto-pulmonary septum. I don’t think my doctors have any pamphlets, or even time to explain. To be honest, I’ve been trying not to ask them any questions or tell them a lot of details lately, because self-pity makes me look like a pathetic, sobbing, and poorly thinking patient. It takes too much courage to talk calmly and thoroughly with a doctor. As you know, I’m not very good at this.

      • #18876
         Colleen Steele 
        Keymaster

        Valerie, I understand but also am sad that you feel that way. A good doctor will listen to and support their patient whether calm or crying. Some doctors or nurses are fine with their patient’s emailing them. Maybe they will allow you to ask your questions and express some concerns in that manner. That way you have their response in writing which might help you better understand what they are saying.

  • #18806
     Jay 
    Participant

    I HAD a Mitral Prolapse for several years. It ended up going bad on me in 2014 and had a Mech Valve Replacement (MVR). Anyway within two years of that I developed Pulmonary Hypertension AND sleep Apnea. I had a sleep study in ’09 and in the hospital prior to my MVR with neg results on Apnea. Sooo PAH and Apnea secondary to the MVR I guess.

    My Cardio Doc says my PAH is severe but so far I am going to the gym regularly and although it is a struggle I’m not dying, just working slower than the rest of the kids.

    • #18808
       Colleen Steele 
      Keymaster

      Thanks for sharing your experience Jay. I know Mitral Valve Prolapse can be more problematic in others. How did you feel after the Mech Valve Replacement? I was diagnosed with Mitral Valve Prolapse as a teenager. I’m in my late 40’s and my new cardiologist recently told me he doesn’t think I have prolapse. The chest discomfort that I experience he believes to be more a symptom of the Long QT that I definitely have.

      My son who had PH had both for certain but the Long QT was much worse and concerning for him. Luckily the Prolapse seemed to remain stable on beta blockers.

      I’m sorry to hear that your PAH is severe. A common thing you will hear among PHers is despite how sick they are, they still manage some activity. I think the body gets so use to feeling a certain way that it makes you feel capable of forging ahead. I think it’s great that you still frequent the gym and I’m sure you have learned how to safely pace yourself. What PH treatments are you on?

      • #18883
         Jay 
        Participant

        Hi Colleen,

        Post op I had excellent results for nearly two years. I was on an Elk hunt up at 7500ft + altitude with my son and after he had killed an elk we were hiking out with the meat. I could only go ten ft at a time and I felt like someone stabbed me in my lungs, but my heart was working AOK.

        Fast fwd done with a week of hunting (I have my priorities) went back to the Cardiologist and ended up with this diagnosis. I was pretty listless for a while as it was kind of a sudden onset. Got the CPAP after that and improved some. I am still very active, but along with my heart getting worse and struggling for air at times, it feels like I am checking out. I assume that is a normal feeling.

        Anyway- yea going to the gym and still very outdoorsy so far. At the rate this is progressing which I think is actually slow I cant imagine the level of activity I am doing now being possible in a few years.

        Meds/treatments? None. Im trying to get revatio (more for another issue 🙁 , but Im sure Id feel much better), but my cardiologist thinks that is a bit pre-mature given my current physical capabilities.

        I do feel very fortunate I can still do most what I want, but we all know the road this leads to eventually. In the meantime- playtime.

      • #18893
         Colleen Steele 
        Keymaster

        Jay, I would recommend more conversation with your doctor about starting PH treatment. The benefit of early diagnosis is to start treatments as soon as possible to delay progression. It’s great that you are able to be active but it sounds like you are experiencing an increase in symptoms. Have you considered a 2nd opinion?

    • #18817
       Brittany Foster 
      Keymaster

      Hi Jay,
      I’m so sorry to hear about that surgery. Unfortunately, sometimes surgeries to fix one thing may end up causing problems elsewhere and it seems like a never ending battle. I am going through some similar things after my last surgery. I went in for them to fix something with my heart and aorta and this ended up shifting the pressures around a little in the heart and doing some damage to surrounding nerves. This was unforeseen

      • #18884
         Jay 
        Participant

        Agreed- If I passed up on the MVR I would have been dead within a week or two so I got lucky. Im on the slow train now, but at least can take in the scenery right?

        That is a total bummer about the complications- hopefully the nerves mend. Although nervs rarely heal right or very quickly I had broken my back several years ago and my right leg suffered a lot of nerve damage as a result. About half of the damage reversed itself so there is hope.

        • This reply was modified 2 months, 1 week ago by  Jay.
  • #18862
     ronald cole 
    Participant

    I have had 2 open-heart surgeries, 1 in 1999 when I was 49, the other in 2012 when I was 72, the second one at 72 I had a leaky Aortic Heart valve so that had to be replaced. It was a very long, life-threatening surgery. I was in the hospital the second time for 40 days and then had to return a weak later for 7 days. They could not get the heart rhythm right. They tried everything including 3 groin ablations and draining my lungs. I left with mild AFIBwhich I controlled with Medicine. I can honestly say I was never right after that second surgery. I have lasted to this point at 78 yrs old, but one year ago diagnosed with PH. I fully believe the lung issue with PH was always thereafter that surgery, just never diagnosed. Now a year later I am definitely feeling the PH taking me down. I am weaker every day and some days it is impossible, except with my severe back injury, I am weak in the legs which compound the weakness from PH. I am tired of living alone and suffering so now I have full home health care with the state of texas, supplying me with PY, Occupational, and Nurses and some home cleaning and laundry help as I have exhausted my savings and now on Medicare and Medicaid. I have a terrific social worker who has shown me how to maximize my benefits. I actually now need help showering and some cooking and happily, they do my Laundry, change the bed and other cleaning tasks. I would think I am now on the Ladder of steps going down, as I am 78. I take 15 medications and insulin also, and Texas gives me a program where I pay $3,35 for every RX no matter the type. I feel lucky I landed here after losing everything in Hurricane Irma, I did not know at the time I would be next to UT Southwestern which is a world-renowned PH clinic but to be honest they diagnosed it and gave me water pills bu that was the end of their support. Perhaps if I go down further to that ugly point of the bottom rung of the ladder, I will be happy to have them I am on a CPAP with oxygen, so needless to say it’s not easy, but that just fine because life never ends well when we come to the end of our lives. I have many people I care about here and when I saw the topic, wanted to bring my lovely friend’s op to date. God Bless each and one of you, and Brittnay I hope your progress, I think of you daily Ron

    • #18881
       Colleen Steele 
      Keymaster

      It’s always good to hear from you Ron! I didn’t know your full story and I am overwhelmed by all that you have been through, including losing everything in Hurricane Irma. It made me sad to think of you feeling alone and sick and I am so glad to hear that now you are receiving more assistance. Social workers can be such a great source of support, I know we have greatly appreciated ours. I will keep you in my prayers and hope that you continue to check in with us when you can.

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