This topic contains 3 replies, has 2 voices, and was last updated by  Brittany Foster 1 month ago.

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  • #20006
     Colleen Steele 
    Keymaster

    My son has been fortunate to have both an excellent PH and Transplant Team. They are experienced and know their stuff, however, my son has still managed to stump them a time or two. Things have come up over the years that had them scratching their heads. Yes, my son has a history of being a conundrum.

    You know you have a good doctor when they see something in you that they haven’t seen in other patients and proceed to do everything in their power to figure it out. I have known my son’s doctors to do extensive research and reach out to other doctors in other facilities to seek advice and share opinions. Things have always gotten figured out and the other positive is that my son serves as a subject to refer to in case the same circumstances presents in another patient.

    Have you ever been a bit of a conundrum for your doctor/team? How was the uncertainty handled and what was the end result?

  • #20026
     Brittany Foster 
    Keymaster

    Oh yes, I definitely have. I feel really grateful for the team of doctors that I have because they do everything in their power to help me receive the best care. They also aren’t afraid to admit when something is beyond their area of expertise. If it is beyond them the don’t just say “sorry I can’t help you”. They actually take the time to research top doctors and point me in the right direction. AND they stay in contact with those other specialists too so that they are still very much a part of my care team. With one of the genetic conditions I was born with, doctors that I have are interested in doing research in it especially because there are so many phenotypes that can be presented because of the mutation. I happened to get literally almost ALL of them. I have a defect on chromosome 7 which is responsible for my heart conditions, central nervous system conditions, breathing disorder, back and spine conditions, bladder and bowels etc. Nobody knew that it would effect as much as it did for me but there are a wide variety of ways this genetic mutation can present. My family has been really an interesting case study for doctors. We have something called caudal regression syndrome and it is autosomal dominant. My 2 sisters also have it and were born with back tumors like me and bladder and bowel conditions. My mom also has it along with gynecological malformations (I have that too). Her brother was born with vascular conditions and HLHS (half a heart) and unfortunately passed away at just a week old. The variations that are seen in this condition are truly “cool” for doctors and researchers to study. The more they know, the better!

    • #20032
       Colleen Steele 
      Keymaster

      Brittany, I can relate to what you are saying. “Outsiders” might be appalled to hear that your doctors expressed uncertainty or even confusion about something. In my mind I’m just grateful that they aren’t pretending to know and treat in a non-helpful manner. I’m also grateful that they tell us when they are uncertain about something, and not in an embarrassed way but in a, “I’m stumped but will figure this out,” way. That is a good doctor!

      How else, such as in the case of your family, is the medical field going to advance? The body is always going to be a learning process for us humans and the sooner we can all accept that, the better we can continue to improve and learn.

      • #20040
         Brittany Foster 
        Keymaster

        I agree, Colleen! That does make a good doctor in my opinion too. I really owe a lot to my doctors who have taken a step back and admitted “this is beyond my areas of expertise”. They have pointed me in the right direction and have made sure that I landed in the correct and most skilled hands. This is a sign that they really care about me as a patient AND a person. Only the best of the best!

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