This topic contains 51 replies, has 7 voices, and was last updated by  Jen Cueva 3 months, 3 weeks ago.

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  • #17449
     Colleen Steele 
    Keymaster

    I believe that most people really do care and want to help, but whether that is true or not sometimes the things they say don’t reflect that. What has been some of the cringe worthy things people have said to you whether it be advice or an attempt to comfort, that actually made you want to run away screaming? How have you grown as far as dealing with situations like this? I know I use to hold my breath to silence myself from lashing out, then find a private place to either cry or vent in anger. To this day one of the most awful things someone said to me was, “Well, we are all going to die from something!” My PH son was 8 years old when these “words of wisdom” where declared. To this day I don’t know how I could constructively respond to that one but I did eventually learn to take other comments and suggestions that bothered me and use them instead as teaching moments.

  • #17452
     Brittany Foster 
    Keymaster

    YES!! This post definitely is a good one that I’m sure will generate a lot of responses. The worst, most cringe worthy comments in my opinion are when some medical professionals state, “I think this is just anxiety” or “I think this is all coming from your head”. Usually these are the ones that I end up NEVER seeing again because, well let’s just say I learned the hard way that nothing good can come from these types of “professionals” who dismiss physical symptoms as a mental illness so quickly. Also, personally, I HAVE STRUGGLED with mental illness and it is NEVER “just anxiety”. Mental illness sometimes is way more debilitating than my physical state of health and it’s never “just” ANY mental illness whether it’s anxiety, depression, PTSD etc. That’s something I believe way more people need to stop saying. A mental illness diagnosis can be just as damaging to a patient.

    • #17518
       Jen Cueva 
      Participant

      OMG @brittany-foster, you got this one! I’ve been told both, “ it’s in your head “ and “ it’s just anxiety “ as well as “ you’re probably just out of shape”, these were by medical professionals and I agree these are things not to be taken lightly and are illnesses. I was “ out of shape “ as I had heart failure and I did have anxiety because I couldn’t breathe.

      It will make you start thinking you’re crazy or “ it’s all in your head “ , after telling you that several times. You are not alone and I’m thankful that we both have other medical professionals who take these things seriously!

      • #17523
         Brittany Foster 
        Keymaster

        Jen,
        I consider myself lucky to have found the amazing group of doctors and surgeons that I now have. The amount of times I have had physical symptoms blamed on a mental illness is too much to count!!!! I was passing out prior to my bypass surgery to restore bloodflow to my brain and was told before they realized what the problem was that my passingg out was a result of inner trauma… yea the trauma of not having bloodflow going to my head… ughhh!

    • #17690
       Robin Webster 
      Participant

      Oh, my gosh. (shaking my head) The word “anxiety” should never, never, never have the word “just” in front of it. Ugh. Especially by a medical professional.

  • #17453
     Colleen Steele 
    Keymaster

    You are spot on Brittany! No medical professional should use the word “just” under any circumstances! The physical and mental wellness of a person really does go hand in hand and both should always be respectfully evaluated and treated. Seriously, whether patient or caregiver, how can you fight a battle like PH on a daily basis and not experience bouts of anxiety, depression and PTSD? These feelings are as real and debilitating as the PH but shouldn’t be used as an “easy” way out of addressing the complicated physical symptoms. For example, my son had a really bad PH episode at school one day. He left his classroom and collapsed in the hallway screaming and crying for help because he couldn’t breath. He was terrified, he was anxious, he was having a mental melt down but…he was also having a PH crisis! Understandably he was experiencing it all at once but to some, it seemed he was “just” having a panic attack. It’s so frustrating and hard to advocate for yourself under these circumstances. I’m sorry you have dealt with the stigma of mental illness as much as you have but it sounds like you have done well in moving on and finding someone wiser and more compassionate to help you. Keep tossing out the bad apples!

    • #17503
       Brittany Foster 
      Keymaster

      Colleen,
      Wow that is truly heartbreaking to read that about your son and what he went through. Unfortunately I have also heard it’s “just a panic attack”. But you’re right that the good doctors should be addressing BOTH mental and physical health. Like you said, how can anyone go through a chronic illness and experience so much trauma and NOT have an impact mentally? I feel like NOT reacting with anxiety or depression to chronic illness is more abnormal !

    • #17521
       Jen Cueva 
      Participant

      Awww Colleen, your poor son! That’s just heartbreaking and I’m so thankful that he has to advocate for him. I cannot even begin to imagine how scared and anxious he must have been.
      As an adult, I have melt downs as well at times, often when I’m having a “ PH Crisis “. I’m sure as a caregiver , you also have those melt downs, and it’s expected. My hubby does as well and it’s healthy and expected, if he didn’t, I would worry.

      You are so correct, mental and physical well being go hand in hand and I wish more would understand this ! I feel like I need to hug you right now . 🤗

  • #17483
     V.R. Peterson 
    Participant

    Oh my, I think the worst one my son heard was also from his doctor. Pre-diagnosis, my son kept getting pneumonia every month or two. Naturally, every time he went in for pneumonia, he had x-rays. When my son asked if it was normal for his chest and back to hurt so bad from coughing, even on the weeks he didn’t have pneumonia, the doctor told him that the x-rays showed some arthritis in his spine. Didn’t happen to notice that his right heart was three times the size of it should have been or the spots in his lungs (which turned out being calcified clots from having CTEPH). Maybe it was because my son was so young — in his mid 20s — that the doctor never even considered heart or lung problems.

    • #17504
       Brittany Foster 
      Keymaster

      wow! so scary about your son too! I hope that once he got the proper diagnosis he had better care. How long were you battling with doctors until he got a proper diagnosis ? The delays in diagnosis and misdiagnosis stories are so hard to hear!

  • #17485
     Colleen Steele 
    Keymaster

    @mamabear007 the comments that I mentioned about my son thank God did not come from a doctor or nurse. One was made by an acquaintance who never became an actual friend, and the other was made by a teacher. I recall all too well the pre-diagnosis frustration. I’m sorry to hear that your son went through it too! I have to say though, getting pneumonia every month should have had your son’s doctor looking over his reports with a fine tooth comb. How long did it actually take for him to get diagnosed?

    For my son it took 2 years. First he was diagnosed with Long Q-T syndrome and mitral valve prolapse, which he did have, but the PH was being missed. When we kept taking him back to the doctor we were being told asthma, panic attacks and more time than I can count, croup. By the time he was diagnosed his heart was severely enlarged and in trouble. It is very hard to diagnose PH in children and young adults, mainly because it isn’t common so doctor’s aren’t looking for it. We are the zebras among the hoofbeats. At least my son’s cardiologist sent him on to a PH specialist as soon as he received the diagnosis. He didn’t pretend to be a specialist in the field and we were grateful for his honesty.

    How is your son doing now? What PH medications is he taking?

    • #17488
       V.R. Peterson 
      Participant

      Colleen, I’m so sorry your son had to experience the judgmental attitudes that so many PH patients experience. They really are zebras in a world full of horses. It took two years for my son to get the PH diagnosis after his first bout with pneumonia — and two years after that before he was properly diagnosed with CTEPH. He had Pulmonary Thromboendarterectomy surgery, where they removed the clots they could reach. That was two years ago.

      My son is doing quite well now. Because the PTE surgery didn’t completely cure him, he had two Balloon Pulmonary Angioplasties last month.

      Before his PTE surgery, he was taking Remodulin SQ, Opsumit and Adempas. He was also on oxygen 24/7. Now post surgery he’s only on sildenafil, which he reports has fewer side effects. He’s also completely off oxygen.

      • This reply was modified 5 months, 3 weeks ago by  V.R. Peterson.
      • #17506
         Brittany Foster 
        Keymaster

        Thank you BOTH for advocating as much as your do! Without the advocacy there wouldn’t be any progress! You are making a difference.

      • #17524
         Jen Cueva 
        Participant

        @mamabear007, I’m s sorry you had that experience with your son, but it sounds like post PTE surgery he is doing much better . I know that doesn’t mean you didn’t and aren’t going through the same things. I imagine those 2 years waiting by for the diagnosis and surgery was rough.

        You are an amazing advocate for your son . Thanks for sharing his/ your story with us. Great big hugs 🤗
        I worked with some local PHkds and their parents and you parents are just so amazing to me ! Well, the kids were too, they are the tiny heroes of PH.

      • #17530
         Brittany Foster 
        Keymaster

        Parents of medically complex children hold a special place in my heart. I’ve seen first hand how my mom literally puts anything aside, no questions about it, and would put her life on hold a million times over if I needed her to. Parents never go unnoticed. We see what you do and we appreciate it more than you know. Sometimes it gets to the point where I will send my mom out of the hospital on an “errand” just so she can get out in the fresh air for a little ! I don’t know how you all do it. But I admire you more than you know.

      • #17536
         V.R. Peterson 
        Participant

        @jenc I think the hardest part was standing on the sidelines, wanting to do so much, but having to give him his space because he’s an adult. So I did lots of praying. Every day, several times a day. I can’t tell him how much praying I did because that would embarrass him. I think it’s harder for men to accept help.

        In the end, God sent him a wonderful woman who gave him a reason to live. Not only that, but my future daughter-in-law had just finished nursing school where one of her instructors had invited a wonderful woman who’d had PH (until her transplant). That woman gave my soon-to-be daughter-in-law the name of a doctor who gave him the name of another doctor who was on my son’s insurance. That doctor was the one who finally provided the correct diagnosis of CTEPH. I’m not overstating it when I say my daughter-in-law saved my son’s life. <3

      • #17541
         Brittany Foster 
        Keymaster

        Wow,
        That honestly just gave me the chills reading this. It is so true that people are meant to be in out lives for a reason and I think your son and your daughter in law are living proof of that. I’m sure they both feel extremely blessed to have one another through all of this. Your prayers and strength for your son definitely doesn’t go unnoticed. My mom is also one of my biggest and strongest advocates and support system. I wouldn’t be half the person I am without her unconditional love.

      • #17583
         V.R. Peterson 
        Participant

        Thank you @brittany-foster and @jenc. It’s even better than that. My son didn’t fall in love with her until *after* he had decided he’d never fall in love — because he didn’t want to saddle any woman with his health issues. I sure am glad the Lord had different plans for him. Makes me one happy mama!

      • #17586
         Colleen Steele 
        Keymaster

        @mamabear007 I am so glad you mentioned that he fell in love after he said he wasn’t going to because that is how my son feels. He doesn’t want to burden anyone with his disease. Your son’s story gives me hope for mine.

      • #17587
         V.R. Peterson 
        Participant

        Yes, @colleensteele, there’s always hope. It might not happen on our time table; in fact, I wondered if love would ever happen for him. Now that I look back, it doesn’t seem as though it took too long (a couple years at the most). When I look at the two of them together, I’m glad he waited until he met her.

      • #17591
         Jen Cueva 
        Participant

        @mamabear007, so sweet and I love that story ! It definitely shows that in the, thee os someone for everyone! I’m sure that makes your “ Moma heart “ happy as I say!

        @colleensteele, I think Cullen will one day find true love too, as Mama Bear says, it may not be in our time, but in God’s time.

      • #17691
         Robin Webster 
        Participant

        I love that story! So happy for your son and for your daughter-in-law as well!

      • #17556
         Jen Cueva 
        Participant

        Wow! What an awesome story @mamabear007! Your son and daughter in law are perfect for each other! I can understand your prayers and the sitting on the sidelines, as a Mom, we want to do everything for our children, adults , too, lol …you are a blessing on so many ways and I know your son knows this as well! Big Moma bear hugs to you 🤗

    • #17505
       Brittany Foster 
      Keymaster

      Colleen,
      all your quotes are spot on! Especially about being “zebras”. It’s hard when you have something that is rare or something that is misunderstood. I’m glad that your son got the proper care that he needed and that the doctor he initially had set him up with someone with the appropriate amount of experience to help. That’s HUGE for a doctor and makes a great doctor!

  • #17494
     Colleen Steele 
    Keymaster

    @mamabear007 V.R. your son had a long journey to reach the progress he has made, but how awesome that he is doing so well now! I believe the statistics is that it often takes 2 years to be properly diagnosed with PH and I guess our guys are an example of that. I keep hoping to see those statistics improve. Thank you for sharing your son’s story. He is an example of how important self advocating is and to never give up hope.

  • #17517
     Jen Cueva 
    Participant

    Wow! @colleensteele, I would not even say I can’t believe someone said this to you and your son, as I’ve heard so many things that make me want to scream, run away or cry! But, I’m so sorry , just because someone says these things do not mean they are right , this is not hurtful or idiotic, even ! I often think to myself , where did they folks even come from, do they even have a heart? Just heartbreaking !

    People can be so rude! I’ve said many times, it’s the adults that are the worst !

  • #17525
     Jen Cueva 
    Participant

    I think the most common comment I hear is , “ well, thankfully it’s not Cancer” , well it’s not Cancer but it is horrible , as I’ve lost many loved ones to cancer but it’s PH and it’s horrible, with no cure YET!

    I also get , “ but you’re too young for oxygen” , well, yes, I think so too, but I don’t have a choice !(often I’m told, “ oh you’re a smoker “) , I’m sure we all get , but you don’t “ LOOK “ sick, which I take as a compliment, since I try hard to “ look “ good when I leave the house!

    • #17531
       Brittany Foster 
      Keymaster

      Jen,
      I get the oxygen comments too. Usually it is just people that are curious as to why I’m on it and I get the “but you’re so young” . It just goes to show the wide range of health conditions people still need to be educated about. Congenital Heart disease is so much more prevelant than all childhood cancer’s combined yet the funding and the education for CHD just is NOT there. That has always been a huge driving force behind my desire to advocate for others in different chronic illness communities. It’s not cancer, but it should be taken just as seriously.

      • #17557
         Jen Cueva 
        Participant

        So true, Brittany, I know so many other diseases besides cancer , as you say do not receive the education and grants, etc., as cancer does and just as important! You’re a huge advocate and inspiration!

        Ohh sorry guys, I locked myself out of the forums, so I had to reset my password, lol the CRS, I guess 😜, so I apologize as I’m trying to play catch up hehe

      • #17567
         Brittany Foster 
        Keymaster

        LOL my brain fog post op is SO REAL! I had a bad case of the Mondays today and forgot my password for two different sites LOL! Seriously the brain fog can be a struggle sometimes. I need to create a document just for passwords or put everything in a notebook or something !

      • #17592
         Jen Cueva 
        Participant

        Lol Brittany, I’m laughing with you as I suffer brain fog often, but I know my oxygen helps at times. CRS, even is awful at times, so I bet after all you’ve been through, it’s not easy, to get back on track. Those passwords are one thing I often forget when it happens, although I do keep a password sheet , not just updated, hehe…

        Humm , do we have a post on “ brain dig “, yet ? Another great one for side effects/symptoms…I know we are not the only ones.

      • #17601
         Brittany Foster 
        Keymaster

        Jen,
        You are so SMART to make a log of all your passwords LOL. I’m telling you, I literally spent a good hour of my day yesterday just trying to remember some of my passwords like “hmmmm let’s try this one now and see if that works!” hahahaha . I feel like some days I just type them as second nature and I’m not even conscious of what they are as I type them. It’s like my keyboard has a mind of it’s own!

  • #17549
     Colleen Steele 
    Keymaster

    I am overwhelmed by the responses to this post. What I notice is despite all of us having experienced the occasional heartless comments from people, we still manage to focus more on the wonderful people in our lives. The things that people say and do that help us on this journey is what stands out for us. I think that falls under advocacy, the ability to weed out the garbage and focus on what is healthy for our mental wellness. Thank you for all the beautiful comments about caregivers but as one, I can tell you that it has been a blessing in many ways. Caring for my son has made me a better person because I have learned so much from his strength and his ability to focus on what is most important in life. Through him I have met so many other amazing people like him…I have met all of you, and I thank you for sharing your experiences with me!

    • #17552
       Brittany Foster 
      Keymaster

      Thank YOU too Colleen, I have already learned so much from you and have started paying even more attention to the caregiver side of things. It takes really strong people to be in our lives for the long run and love us through the ups and downs. I can see how having a child with such a serious diagnosis can help you appreciate the little moments in life that many people take for granted. That’s something that I consider a positive in my own life too and hopefully it has helped others who are close to me to really practice living in the moment. I find that if I focus too much on the future or what’s to come I can easily get overwhelmed and scared. I have to usually redirect myself when this happens!

      • #17563
         Jen Cueva 
        Participant

        So true, Brittany! It takes some special people to be a caregiver as you mention , it’s unconditional love and I’m enjoying rewarding about their experiences and side of the story as well.

    • #17559
       Jen Cueva 
      Participant

      Colleen, I love your comment on “ weeding out the garbage and focus on what’s healthy for our mental wellness”, you’re a huge blessing ,I know for your son and already here to us in the forums!

  • #17602
     Colleen Steele 
    Keymaster

    Jen and Brittany, I am laughing at your password challenges because I am right there with you! What is so helpful until it’s not is being able to have my computer save the password to certain things. This is great until I go to sign in using something different and need to remember it. I finally give up, reset the password, and that just adds to the confusion later.

    • #17604
       Brittany Foster 
      Keymaster

      Totally adds to the confusion! The best is when I reset my password and then type in my old one and wonder why it’s not going through!! So many hilarious “brain fart” moments ! Especially because I usually just end up staring at the screen like “what now?” hahaha.

    • #17623
       Jen Cueva 
      Participant

      Haha , Colleen, so true…I love when my computer remembers, I change my passwords frequently as well, even with most written down, once I change them, I don’t always update, lol

      Lol Brittany, I can relate as Im sure my hubby thinks I’m losing it when that happens and I’m looking at the screen, frozen and like , now what as I’m talking to my screen, like it’s the reason I can’t remember, hehe

      • #17624
         Brittany Foster 
        Keymaster

        Lol! You know what does actually get to me sometimes though… when my boyfriend brings up a story or a movie that we saw together and I literally sometimes have zero recollection of the story or the movie. It’s like I knew I was there and it happener but I couldn’t tell you one single detail. That’s when my memory lapses scare me sometimes.

      • #17627
         Jen Cueva 
        Participant

        Ohh Brittany, you are NOT alone in this area, and I thought it was my other medical issues, I’ve watched Gilmore Girls with my Daughter and a few days later she’ll talk about it and I’m like, we didn’t watch this one, catch me up…it’s happened more than once and as well with my hubby. It’s definitely a scary feeling to say the least. I start thinking, oh crap, am I getting Dementia now, thankfully it’s not everyday ! Very scary feeling …

      • #17629
         Brittany Foster 
        Keymaster

        Jen,
        It for sure is a scary feeling. I also worry about dementia. I took at neuropsych study one my memory and function a little less than a year ago an because of my apnea and the lower oxygen that I was living with for so long I actually ended up doing very poorly on the testing in the areas of short term memory, and my reactions and responses were pretty severely delayed on that portion of the test. In my write up of the report for the neurologist it stated that I was also at an increased risk of dementia at an earlier age. These findings scared me but they also helped me to make sense of where my “weaker points” were in memory and reaction time. It just helped me to put the pieces together of why I was feeling so “out of it” a lot. Have you ever been for this type of testing or anything like this before?

  • #17692
     Robin Webster 
    Participant

    Oh, WHY can’t they just invent a thing to let you show your fingerprint to “sign in” to various sites on your desktop computer instead of requiring passwords? You KNOW the technology exists. I try to keep a log of passwords, but I don’t always remember to write down new ones. Or if I’m at work the list is at home or the other way around. Sometimes I’m just screaming at the screen, “I have an oxygen deprived brain and lingering chemo brain fog! Just let me in!” LOL!
    I think recently the most frustrating well-meaning advice I’ve been getting from folks who know I have multiple serious illnesses is that they say I “ought to just try medical marijuana.” Not that I have anything against those who do take that (or anything against it in general, after all I went to high school in the ’70s, haha!) but I’m not cavalier enough to just start dabbling on my own and messing up a pharmaceutical regimen that has taken half a dozen doctors several years to develop for me and get me to remain pretty functional, slowing my disease progression. Folks insist “it’s easy to get” or “I can get you some” or “you can eat it in brownies.” Uhhhh, yeah, I guess you can. But when I’ve been warned not to even get a supplement from the GNC store because it could mess with my other meds, do you really think I’m just going to go get high and suddenly be well?

    • #17698
       Brittany Foster 
      Keymaster

      Robin,
      I know what you mean by the marijuana advice. This also happens with the “have you tried CBD oil?” . Even though I am all for CBD oil as a supplement that has been approved by my doctors, it doesn’t take away the fact that I’m dependent on so many medications to keep my heart beating as strong as possible. Unfortunately the “all natural” approach or the “just go vegan ” approach to “healing our bodies ” does not work for many of our diseases.

  • #17702
     Vanessa Vaile 
    Participant

    Overwhelmed by this thread. I don’t know where to start responding, tomorrow maybe. This is, after all, the time of the night when the brain fog rolls in. Until later, yes to all of the above.

  • #18735
     Libby 
    Participant

    I hate it when people listen to a watered down version of my health issues (because a detailed, accurate description would probably short circuit their brain 😀 ) and they respond with “….but you look so healthy?” As if I’m lying to them.

    • #18757
       Colleen Steele 
      Keymaster

      Libby, do you know about the PH Facts Wallet Card available for free through PHA? Many of us have used it to help educate people about PH. Hand it out to people when you are trying to explain the disease and hopefully they will take it home and research a little more for themselves. https://phassociation.org/pha-free-materials-store/

    • #18760
       Brittany Foster 
      Keymaster

      Libby,
      my personal favorite is “but you were fine a few hours ago!” When I was first starting to really get into the relationship with my boyfriend it was hard for him to understand that I could put on such a good face in front of my friends when I was hanging out with them and then go home and just want to sleep. It took a lot of energy to “fake well” or try to enjoy myself and then when I acted different or appeared to be different in front of just him, that was really hard for him to understand at first. I could see how this would be confusing though. I always assume people KNOW about chronic illness because we have been living with it our whole life, but that’s just not the case. Educating others goes a long way .

    • #18791
       Jen Cueva 
      Participant

      Libby, you’re definitely not alone in this. As Colleen shared those free cards are great to have. Although, some I’ve tried to educate for tests and they still just don’t get it!

      Brittany says it well as we ” fake well”, I’m often told ” but you did this yesterday.” If I’m not in the hospital, I’m fine. Even when in the hospital, as I’ve been in so much, it’s just part of my life. Do y’all get this from people too? It’s like I enjoy the hospital, really?

      • #18825
         Brittany Foster 
        Keymaster

        Jen,
        When some people are in their “Moods” in my life i get ignorant comments like “Oh, you’d go to the hospital for a cough or a stubbed toe!” In my head I am like “are you KIDDING ME!?” seriously, as if we WANT to be there. And also, that “cough” or something that seems so simple to the average healthy person, could in fact be something that kills us or leaves us in severe respiratory complications and respiratory distress. I know when something is up with my body and I WILL take care of it. And if that means going to the hospital and being admitted, so be it. Yes, it may not be “cancer” but that can’t be the only diagnosis that turns heads! So frustrating.

      • #18848
         V.R. Peterson 
        Participant

        Ugh, Brittany! Those people that pronounce such judgmental views likely wouldn’t be able to deal with a 10th of what most PH patients deal with! I’m so sorry you deal with that.

      • #18859
         Jen Cueva 
        Participant

        Exactly, Brittany, I don’t know how some can be so rude. I like how you say, they get in ” moods”, it’s like you never know what they may say. Like yourself, if I need help, I’ll go get help. It’s definitely not that I like the hospital. Really?

        @mamabear007, so true, I feel the same way! Walk a mile, rather, live a day in our PH bodies.

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