I found your video by happenstance. I received my diagnosis when I was ten years old, and it's been an uphill battle since. A doctor I spoke to once said the chances of a child getting this disease is one in a million and that fact makes it easy to feel isolated with this. It's comforting to know that I'm not the only one trying to live with this. I hope you're doing well. Thank you for making this video.
I am so sorry you go through this disease. I am in the same boat minus Achalasia. ( Absent peristalsis but functioning LES). My biggest symptom is silent GERD, especially dyspnea. It is quite brutal. I met so far lot of people with your condition, but almost nobody reports LPR. Which i find strange, no peristalsis, no severe reflux?!
So sorry to hear about manometry being done improperly for you. 😔 While I was having it done couple of weeks ago it was strange to me how long the nurse kept pushing the cathether but it still didn't find its way down the throat, and she was stumbling and taking it out and pushing it in... Arghh. Through tears I had this strange idea "wtf, what if she damages something. Hmmm, then I though to myself, well there's probably nothing that can go wrong. I mean there is only one path." Luckily it all went well in the end... But now seeing this and your first experience with it is shocking. :( Did you recover from what was damaged during the procedure? This makes me so mad, it's so irresponsible to give this medical procedure to a first time without a proper mentorship alongside. 😔😔 Also, yes, it would be great to hear your husband's perspective. Try maybe doing an interview with him. 🙂
I am still working to recover from the trauma. So I haven’t overcome that damage. And my nasal passages are still wonky from it. It’s just the worst procedure ever
I am a nurse and I can tell you that inserting a tube is not as simple as you think, I am very good but doing it to a patient without peristalsis would be a difficult challenge. In any case, people should be better educated!
I can’t imagine it would be easy at all but I also can’t imagine doing it without proper training or expertise!! I don’t know. I’m only a counselor in training!
I found your video by happenstance. I received my diagnosis when I was ten years old, and it's been an uphill battle since. A doctor I spoke to once said the chances of a child getting this disease is one in a million and that fact makes it easy to feel isolated with this. It's comforting to know that I'm not the only one trying to live with this.
I hope you're doing well. Thank you for making this video.
I’m so glad you feel less alone. ❤️ it is so scary as a kid (and as an adult). Thank you for your sweet comment
I have achalasia as well! I love hearing people’s stories about it. Sometimes all we need is someone to relate to and talk to
Liked 👍 keep it up.
I am so sorry you go through this disease. I am in the same boat minus Achalasia. ( Absent peristalsis but functioning LES). My biggest symptom is silent GERD, especially dyspnea. It is quite brutal. I met so far lot of people with your condition, but almost nobody reports LPR. Which i find strange, no peristalsis, no severe reflux?!
I’m sorry I’m not quite sure what LPR is
@@sommerrose5218 It means silent gerd or laryngopharyngeal reflux. I am glad you don't have it.
So sorry to hear about manometry being done improperly for you. 😔
While I was having it done couple of weeks ago it was strange to me how long the nurse kept pushing the cathether but it still didn't find its way down the throat, and she was stumbling and taking it out and pushing it in... Arghh. Through tears I had this strange idea "wtf, what if she damages something. Hmmm, then I though to myself, well there's probably nothing that can go wrong. I mean there is only one path." Luckily it all went well in the end...
But now seeing this and your first experience with it is shocking. :( Did you recover from what was damaged during the procedure? This makes me so mad, it's so irresponsible to give this medical procedure to a first time without a proper mentorship alongside. 😔😔
Also, yes, it would be great to hear your husband's perspective. Try maybe doing an interview with him. 🙂
I am still working to recover from the trauma. So I haven’t overcome that damage. And my nasal passages are still wonky from it. It’s just the worst procedure ever
I am a nurse and I can tell you that inserting a tube is not as simple as you think, I am very good but doing it to a patient without peristalsis would be a difficult challenge. In any case, people should be better educated!
I can’t imagine it would be easy at all but I also can’t imagine doing it without proper training or expertise!! I don’t know. I’m only a counselor in training!