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    • #24481
      Colleen Steele
      Keymaster

      Have you ever made a medical decision that you ended up regretting? What was the decision and why do you wish you could go back in time and unmake it?

      My son and I have agreed to a lot of treatments, procedures, and tests over the years. Luckily I can’t think of any that we regretted. I’m not talking about medical options that you tried but they didn’t work so you ended up going in a different direction. It’s a given that Battling PH is often a game of trial and error. I’m asking about decisions that did you physical and/or mental harm.

      The one that stands out for me as a caregiver is not telling my son right away that he might have developed Cancer post-transplant. Since he was a minor and already going through a lot during recovery, I decided to wait until his doctor received all the test results. Thank God, he did not have Cancer but my son was very unhappy, even a bit traumatized, that we delayed telling him about something so important. I do wish I could go back in time and be upfront with him.

      What are your regrets?

    • #24499
      Brittany Foster
      Keymaster

      @colleensteele I have had some that I regretted. Not necessarily the procedures themselves, but I regret not speaking up for myself sooner. If anything, it has made me a stronger self advocate to fight for what I know I need and what I know will work for my body. I was so upset when I kept just getting tube after tube placed even though the tube itself wasn’t the problem it was how my body was reacting to it. In my head I would hope that each tube I had surgically placed would yield a different outcome but it never did. Finally, I spoke up for myself, searched for a second opinion, and now I am very happy with the treatment I am receiving and the help that I am getting.

    • #24534
      Dawn
      Participant

      @colleensteele Like Brittany, my biggest regret is not speaking up and being more forceful when I felt so surely that there was something wrong. I can understand that because ph is rare it wasn’t the first thing the doctors looked at, but when I kept telling them things weren’t getting better I got frustrated that it took so long to get any action. The good thing that came from that is that I trust my instincts more now and do speak up for myself in many more areas than just medical. While I have great respect for my doctors, except the first pulmonologist I saw, I no longer look at them as having all the answers. They are human, can make mistakes, have their own issues like everyone else. I know now that my health is mine to take care of and that means speaking up, questioning, asking for understandable information, being my own strongest advocate, in partnership with my doctors.

    • #24545
      Jen Cueva
      Moderator

      Oh, no, @colleensteele! You are not alone; we all have regrets. A local PH teen had a transplant last year, and she did develop PTLD and still going through treatment for that. I feel so bad for her. Even as a teen, she is so resilient and a warrior.

      I am not sure if I have had any specific medical regrets, but there are certainly times when I wished I would have said no to procedures that I did not think was necessary at times. Through the years, I have become better at that and advocating for what I feel is best for me. I have also changed PCP doctors once years ago without much thought and should have waited to do that. We learn by our mistakes, right?

    • #24562
      Colleen Steele
      Keymaster

      @brittany-foster and @dawnt I can also relate to your regrets for not speaking up sooner. My son has been fortunate to have very gifted and compassionate doctors from the get-go, but even they missed PH for 2 years. As parents my husband and I intuitively knew that something more was going on with our son than asthma or panic attacks. We road the roller coaster ride longer than we should have. Finally we spoke up loud and clear, “We don’t think you are missing something, we KNOW that you are!” It was actually his pediatrician who contacted his cardiologist and said, “I know this is not something we normally see in children, but I’m start to think we might be looking at PH.” Sure enough, she was right.

      Dawn, are so right, the positive that came out of that experience is that it gave me the courage to speak-up and better educate myself once moving forward. Unless there is glaring negligence on the part of a doctor, I also try to remain understanding and appreciative of their efforts, even when they miss the mark. It has always been my belief that they had my son’s best interest at heart.

    • #24568
      Carol Volckmann
      Participant

      Hi Everyone, reading everyone’s posts- the lesson for all of us is to speak up and be a strong advocate for yourself. I always thought I was. When I finally was diagnosed with PAH, and changed Pulmonologists twice when I was told I had 3-5 years to live (that 10 yrs ago and I am still going strong at 76)I did not believe them and searched for a team that I have now.

      But I too did not speak up when 2 years ago I felt a hard something on the left side of my tummy and I asked my Internal Medicine doc was this scar tissue caused by the subQ – but nothing was done. I finally spoke up strongly and insisted to look at this – long story short, I have a very large spleen and all the blood work up still has not shown why – I now have to have a bone marrow test (not fun) and also found out my platelet count is low. I regret I did not insist 2 years ago. Now I hope the results will be okay.

    • #24574
      Brittany Foster
      Keymaster

      @cdvol3gmail-com I couldn’t agree more with the valuable lesson of self advocacy and making sure to speak up for yourself if you think there is a problem. I let so many procedures after procedures happen and the ones that I needed just kept getting pushed off or to the side until it almost was too late for my body because I was feeling so weak. But, even after just not even a week of the therapy I am getting now, I can see a slight difference in my energy levels. I know it is something that takes time to adjust to and see the effects from so I am being patient with it and giving myself space to be patient.

      I am so sorry to hear about what you are currently going through. I am sure that fills you with a lot of worry and a lot of guessing about what it could be. With past history of doctors not taking me seriously or me having to basically come up with my own conclusion that ended up being correct, I have a hard time trusting medical professionals at first to get something right and feel like I always have to do my own research. As much as this can be helpful to advocate, it also can bring on a lot of stress and worry too with trying to find more information.

    • #24578
      Brittany Foster
      Keymaster

      @colleensteele I also always try to be understanding of where the doctors are coming from. Even though it seems like there has been so much delay in between with my care. I know that this is something that a lot of doctors are new at treating. It’s hard when they don’t really have a lost of cases to compare it to so sometimes it can feel like they are dragging their feet when reality they probably feel stuck and want to make sure they are making the right move.

    • #24579
      Carol alexander
      Participant

      Yes I to didn’t speak up I trusted my doc to look out for me my ph was missed for almost 12 years I had trouble breathing when walking but not all the time
      I went to my doc my oxogen was so low I ended up in emergency I was told I had the flue I ask about a pulmonary doc told I didn’t need one so I regret I was so stupid

    • #24586
      Brittany Foster
      Keymaster

      @carol-alexander try to give yourself some grace here. I know it is so easy to place blame on ourselves thinking “we should have known” and think about all the things that we should have done differently if we could. But, we can only take what we have learned to help us move forward. At least that’s what I try to do. Sure, there are days when I get caught up on the past and judge new medical doctors based on the mistakes of old ones. It is hard to get that trust back again for medical professionals after something difficult happens. I think of it kind of as learning to heal again after abuse (either emotional or physical). At first, our trust is really impacted and we have our guard up. But eventually if we find the right doctors and medical team, we slowly can start to build that back up again and hopefully develop better communication and understanding.

    • #24591
      Jen Cueva
      Moderator

      @carol-alexander, I agree with Brittany. We learn from our experiences and must be patient with ourselves. You may not have spoken up then but you did and insisted until they did something. I hope that although the bone marrow test is not fun, maybe you will get some answers.

      It certainly can be stressful and traumatic when we deal with doctors who will not validate our concerns. Hugs to you from Texas.

    • #24599
      Colleen Steele
      Keymaster

      @cdvol3gmail-com I am so very sorry to hear about all that you are going through right now. Update us when you can, especially regarding the bone marrow test. I will be thinking of you and keeping you in my prayers!

    • #24601
      Colleen Steele
      Keymaster

      @carol-alexander you are NOT stupid! Please don’t think like that. What happened to you had happened to many of us. It’s often difficult to know when to be more persistent and when not to. I still often have more of a, ‘trust first’ instinct.

      You know those smiley face charts that doctor’s offices often have to help you rate your pain and discomfort. When I’m talking to a doctor either about myself or my son, I visualize that chart. In my mind I rate the pain and discomfort and then rate the doctor’s response to it. If he/she is too behind in responding to where my level is at, then I speak up louder. Know what I mean?

    • #24602
      Carol Volckmann
      Participant

      Thank you Colleen for your caring thoughts. You are always there for so many. I will update you when I know what the results are. My bone marrow test is going to be the 1st week in May. Thank you again. Sending hugs!

    • #24605
      Colleen Steele
      Keymaster

      @cdvol3gmail-com I hope the results clear you of any serious concerns. I can imagine how worried you must be feeling. Try to find things that you enjoy to help distract yourself, that is if you feel well enough to. I’m so sorry.

    • #24627
      Jen Cueva
      Moderator

      @cdvol3gmail-com, please know that we will be thinking of you during your bone marrow test. I am hopeful that you will get some answers but nothing serious. As Colleen says, keeping your mind busy can be helpful. For me, this may be music, writing, just sitting out back enjoying a bit of fresh air. Big air hugs are coming your way from Texas.

    • #24628
      Jen Cueva
      Moderator

      Hi @carol-alexander, you are not stupid! We all learn as we go. I think that every year I am a stronger advocate for myself than the previous year. Living with PH for 15 years, some would think that I am an expert. This is far from the truth, I learn daily from others like yourself and within the PH community.

      We have to give ourselves some credit and know that the kindness and patience that we extend to others, we should be doing for ourselves. I am sending you big Texas-sized hugs.

    • #24633
      Carol Volckmann
      Participant

      Hi Jen, thank you for your good thoughts. I hopefully will have my test 1st week in May but won’t have the results for several days. We are keeping quite busy. Just arrived on the Olympic peninsula and will move into a rented home home and put our motorhome in storage till we are able to travel again
      So, lots on my mind and lots to do. We are both trying to keep positive. Whatever the outcome, we will deal with it and keep moving forward. Thank you again and I am sending you some air hugs!

    • #24634
      Jen Cueva
      Moderator

      Hi @cdvol3gmail-com, that sounds like an excellent plan but also a ton of work. I hope that you will pace yourself and rest in between. I am sure that the busyness of the move-in will distract you. May will be here soon enough.

      I love the optimism! It is so important to have when dealing with PH and coexisting issues. It sounds like your husband offers the support that you need, too. Keep this mindset going!

      Let us know how we can best support you with all on your plate. I am a horrible mover, but an excellent supervisor in these situations- Hehe. My husband and daughter would tell me this with any move as I wanted to help with everything. I wish you all the best this week and, of course, air hugs.

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