Doctors need patience (not patients).

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Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 950
   Posted 1/10/2014 8:52 PM (GMT -6)   
What I would like to have is a physician who has personally experienced GERD, taken PPI's without much help, feeling generally ongoing miserable, then perhaps had surgery. I think he would see his patients from a much different perspective. Some empathy and understanding would show through. A better understanding of our recovery too and what one goes through. Symptoms would be believed. Please know that I wouldn't wish this illness on ANYONE but am using this to express my frustrations over it all. I don't think I'm the only one. Please know I do have the highest respect for the medical profession and we do need them-- I know this very much. Thanks for listening.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 1/10/2014 11:36 PM (GMT -6)   
Hi Pat,
I couldn't agree with you more. My first GI doc was totally obnoxious. He would sit and tell me I wasn't experiencing what I was experiencing. I finally just had enough, and fired him. I asked my PCP (a wonderful doc) to recommend a GI doc that would LISTEN to me, and after giving it some thought, he recommended another one, who was much, much better. He would listen...really listen to what I had to say. And didn't tell me I wasn't experiencing what I was experiencing.

That said, he didn't really understand how little reflux can affect asthmatic lungs, and dragged his feet for years in regards to surgery. My PCP was pulling his hair out in frustration, as he was certain my reflux was raising havoc with my lungs.

He finally referred me to a surgeon himself. At that point, I went back to my GI doc, with the additional testing. At that point he told me I could continue with meds (seriously. meds. my lungs were in "life-threatening condition according to my PCP) or he'd refer me to a surgeon. Three weeks later I had the surgery, and after 3 months of healing, my lungs were 100% better.

My asthma/allergy doc has allergies, and is much more understanding. Good luck finding someone who has empathy and will take you seriously. Perhaps your PCP can help find the right person for you. Don't give up!

Hang in there!
Denise

GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

33333
Regular Member


Date Joined Jun 2012
Total Posts : 94
   Posted 1/11/2014 2:52 AM (GMT -6)   
Totally understand how you feel Pat Fill! When my doctor told me just to accept my symptoms, it really broke my heart.

Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 950
   Posted 1/11/2014 9:21 AM (GMT -6)   
Thank you Denise.
Thank you 33333.
I could say so much more to add to your comments but WE understand-- the HW forum is filled with experiences that make me cringe.

I also think some family and friends need to have an adjustment of their understanding of GERD. I've made a point to take the time (pulling out pictures on my iPhone ), giving indepth info. Most are surprised thinking it is just a simple Tums fix,-- some just want to get away from me (they don't make it). (I am a very senior citizen and they tend to respectfully listen). Actual LINX from barium swallow pictures grabs their attention the most. Comments back are wow-- I didn't realize it could be that serious--- then I explain the fundoplication too--if I still have their attention. This is called educating one person at a time.

Thank you Moderators and Healing Well Forum. Thank you!

Kay207
New Member


Date Joined Jan 2014
Total Posts : 16
   Posted 1/11/2014 10:02 AM (GMT -6)   
I agree. It would make me less anxious knowing that I am going to get the help I need. I would never have thought GERD and related problems could make someone feel so poorly and helpless.

Whenever I explain my symptoms to my GP or any other health professional its as if no one has had these symptoms before. I think they expect people to say they just have a little heartburn from time to time so they can give some form of medication and send them on their way.

But when the illness extends beyond that they look at you like you have two heads and make you feel like a hyperchondriac which then makes your situation worse because the waiting and suffering makes you even more anxious which makes the problem even worse.

I was actually shocked that 3 doctors I have spoken to recently thinks that the epiglottis is the dangly bit at the back of your throat and not the flap in your throat. The dangly bit is the uvula so how have they qualified as a doctor if they don't know the human anatomy inside out?

It seems to me they learn a paragraph on each illness just so they can diagnose from a bunch of symptoms rather than knowing how it can extend beyond those symptoms and what effects it can have on a patients state of mind and wellbeing.

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 1/11/2014 12:01 PM (GMT -6)   
Pat Fill

You have brought up one of the most irritating things we have to deal with. I have been very lucky that I have found a couple surgeons and GI doctors who have great doctor patient communication.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

Noelle3
Regular Member


Date Joined Sep 2013
Total Posts : 193
   Posted 1/11/2014 2:15 PM (GMT -6)   
Pat Fill, I couldn't agree with you more. This is a very frustrating condition made even more so by ignorant doctors.

Noelle3
Regular Member


Date Joined Sep 2013
Total Posts : 193
   Posted 1/11/2014 2:43 PM (GMT -6)   
Hi Kay207,

I am so pleased you have posted here as I could have written every word of that myself!

You wrote "when I explain my symptoms to my GP or any other health professional it's as if no one has had these symptoms before" and that they look at you as though you have two heads. I completely relate to that as that's exactly my experience too. Why is that when I've read over and over that reflux symptoms are one of the most common reasons for attending a GP?

I've come to the conclusion that they only know a small amount about a lot of illnesses and conditions.

And yes like you it would make me far less anxious knowing that I am going to get the help I need.

I wish you well.

Noelle

BEACH-GIRL
Regular Member


Date Joined May 2012
Total Posts : 467
   Posted 1/11/2014 6:11 PM (GMT -6)   
Pat Fill,

You are absolutely correct. I feel exactly how you feel.

I wish the docs could step into our shoes for a day and have to live with what we go through. I don't wish illness to anyone, but I think they have no clue as to what we are going through. This is a very frustrating part of the medical profession.

Hugs to you. :)
BG

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 1/11/2014 9:35 PM (GMT -6)   
Wish there were "Like" buttons on this forum, like on FB. There are so many times I want to "Like" things people write! turn
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 1/12/2014 5:40 AM (GMT -6)   
Touching on this, my PCP has GERD and has asked me questions about treatment and the surgery. Seems even doctors can't get true information about this.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 950
   Posted 1/12/2014 7:50 PM (GMT -6)   
Bill,-- yes, I sincerely believe the docs can learn from you. I know I did.

Family doctor told us he's now thinking twice before prescribing PPI's following our rebound problems. He said he learned from us.

On an earlier visit to a GI doctor,-- he didn't believe in rebound as none of his patients had problems stopping PPI's. I told him it was in journals. On a subsequent visit we told him again about rebound and he said oh yes that does occur.

It is hard to keep up with all the 'new' medical info coming out. In a restroom in the doctors office was a wicker basket full of medical journals next to commode. All looked unread unless you count me.

RebeccaG
Regular Member


Date Joined Dec 2013
Total Posts : 20
   Posted 1/15/2014 3:30 AM (GMT -6)   
I couldn't agree more. My GP made me feel like I was being silly, even though I ended up in the ER twice with tachycardia. One nurse in the ER showed me my patient file where it said it was probably psychological. It wasn't until I purposefully triggered an episode while wearing a monitor (strong coffee and a cigarette in the hospital carpark!) - my heart rate was over 220 beats per minute. I then had a echocardiogram that showed I had Supraventricular tachycardia (very rapid heart rate) but they couldn't say what was causing it.
I got so frustrated and it took 18 months to get a GORD diagnosis of sorts as my GP didn't refer me for the right tests - I paid for some myself (no health insurance - didn't think I needed it here in New Zealand) until my funds ran out. I ended up diagnosing myself and had to keep pushing my doctor to believe me.
My GP had to admit she got it wrong 4 years later when I got accepted into the Endostim device trial due to my GORD symptoms and ph levels being so bad. Being part of this trial has been an amazing experience as the clinical team know what I've been through and are trying to find a better treatment for us - their support has been fantastic.
I have met very few medical professionals that know anything about GORD and the distress our symptoms can cause. I have been educating every medical professional I have met since.
There needs to be some way of getting our condition better recognised as it is so common.
Keep believing in yourself and don't let the doctors make you feel like you are overreacting - this condition is very real and very distressing.
Rebecca

Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 950
   Posted 1/15/2014 7:56 AM (GMT -6)   
Thank you RebeccaG.
I could write about other circumstances that frustrated me so much. Many patients have experienced like you. Thanks for sharing. I've been following your journey with this illness. Pat

LPR-X-CON
New Member


Date Joined Jan 2014
Total Posts : 14
   Posted 1/15/2014 4:38 PM (GMT -6)   
Very wise thing to say indeed. Doctors have no idea. LPR victim here who has been told by multiple ENTs for over 10 yrs that the
1. burning sensation in throat
2. hoarseness
3. vocal cord stress with voice quality change (i used to sing but lost significant range) 4. postnasal drip $ throat clearing like hell!
5. difficulty swallowing
6. on some occaisions, even breathing burned like hell the air would go into what felt like a scorched medium
7. throbbing pain and hearing loss in right ear (only just figured the correlation since i;ve learned about LPR thank god! so i might as well throw that in..
were all due to to sleeping with mouth wide open,yelling at kids/husband/,emmotional stress,allergy.. Since after all, there were no signs of infection.
I did experience an upper abdominal bloated feeling and serious shortness of breath whenever i ate absolutely anything. It felt like i was putting PEBBLES in my stomach. I never was aware of any burning sensation in the chest so naturally that never came up when doctors examined me coz i figured it was not related to the ENT problem. And ,of course, no doctor EVER mentioned the possibility of LPR!
DEC 2013 (VERY HAPPY OLD YEAR) i stumble upon an article et voila! all pieces fall into place and i made made my own diagnosis of LPR probably caused by a Haital Hernia (coz of the breathlessnee and upper abdominal pressure after food)..Went to an Enterologist and demanded the Endoscopy under gun threat!..And there it was! my very own 2cm Hiatl Hernia!!Finally my problem has a name! On the endoscopy report doctor recomended PPIs claiming that my friend was too small to cause serious problems. But i KNEW better!! and demanded the wrap again under gun threat!! i might as well take the chance and tackle this radically.ill see how it goes from there..Next monday God willing.
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