venting about some doctors that blow you off

[AmericanChai]

I am not sure where to put this . . sorry so long

(I hope this is okay to post here-- I'm not looking for medical or legal advice!)

I just want to vent about some doctors. I also way to say that I have found some really great doctors but it took some searching to find ones who would really listen and take me seriously about my concerns and think outside the box. Anyone read that book "How Doctors Think?" I only got through part of it before it was due back at the library but it was excellent read. Highly recommended.

Story #1

My friend just called me in tears. Her mom is an ovarian cancer survivor. She went to her mom's house yesterday and noticed her mom's face was sagging on one side, and her mom said she had woken up weak on one side. Her mom also seemed spacey. My friend was very concerned and went to the doctor immediately with her mom (her mom's GP). The doctor basically looked at her and said she was fine. My friend insisted that her mom was not fine and these developments were alarming. The doctor said if would make them feel better he would order a blood test. She was to come back this AM for the blood draw. Mom went back (got lost on the way due to being out of it). Friend met her there. The nurse could not find any orders for a blood test. Friend asked to see her mom's chart, that perhaps the doctor had put it in his notes. The notes were not even completed and signed and there was no mention of a blood test. Mom went home resigned, trusting the doctor that she was fine.

My friend called me and I told her that if I were here, I would take her mom to ER right away, it sounded like a stroke or something. My friend's mom would not go. My friend called a neuro and spoke with the nurse and asked what should be done. The nurse said to take her to ER. Since a nurse said it, the mom agreed to go. They did a scan and found a golf-sized tumor in her braiin.

Story #2

My dd was born and was never a great eater. She was only getting 12-15 oz per day at 3 months old. She screamed all the time and was just a very unhappy baby. I went back to the doctor time after time saying something was very wrong. The doctor said she had colic and kept telling me to switch formulas. Finally when she was 3 mos old she refused to eat all day, was getting dehydrated and I decided to take her to ER. She was admitted for 6 days, dx with FTT and GERD, dehydration, low fat stores, and high bp due to pain. After tests to rule out kidney and heart problems and other things, she was sent home with an NG tube. She started to gain weight finally and to this day at 3 years old still has a feeding tube (gtube) and has no natural appetite. I liked the GI she saw at the ER but we were unable to keep seeing her due to insurance policies.

I had a GI follow her from 10 months until she was 35 months old. My dd would go up and down with her eating but always needed the tube. We started to call the doctor "Dr. Dolittle" because he never seemed like he was interested in finding out what was going on. I used to call him in tears. He never did any testing on her. Her feeding therapists said she made great progress, but because of her continued vomiting and pain and frequent infections (ears, etc) they felt there was something going on and I needed to take care of her medical issues before she would ever eat well enough to tube-wean. I finally saw another GI. A month later she was scoped and dx with eosinophilic esophagitis. She was put on elemental formula and was much happier, started to meet milestones like crazy, and is fine today. Still has EE but we know how to deal with it now. She also still has GERD. Now we are very happy with her new ped GI and her current pediatrician but it took me shopping around to find them.

Story #3

I was having chest pain on and off after my second pg. My GP send me for heart tests and my heart and bp and all that are fine. She said maybe I pulled a muscle or maybe I'm stressed out (which is reasonable to think). I also suffer from intermittent food dysphagia and have for years-- food and pills take awhile to go down and it can be painful but I just drink lots of water. After my dd was dx with EE I started to read up on it and recognized I was showing some of the adult symptoms. I went to an adult GI and told him about my dd's condition and asked if I maybe had it too. He scoped me and did biopsies.

He found a big hiatal hernia and said he found rings of fibrosis in my esophagus and some inflammation. Inflammation was from GERD from the hernia and he was not sure about the rings but they are caused by long-term inflammation. I asked if they found any eosinophils on the biopsies and he said they didn't check for them, he was convinced I just had GERD. I started on the PPI's but they didn't help as much as I hoped they would. I called him back and said, could I possibly have EE, because EE patients don't respond well to PPI's. I insisted they take another look at those biopsies, and also I wanted an exact count of eos if they found any. He did not call me back for 3 weeks and I called him. He said he got a call from the pathologist and they did find eos! I asked how many and he said first he wasn't sure, didn't have it in front of him, finally when pressed he said around 10 per hpf. I asked if I could come and get a copy of the report and he said yes he would leave it with the front desk.

Next day came to get the report. They couldn't find one for me at the front desk, pulled my chart, and there was nothing newer in it than the original path report with no eos count. I asked if it was on his desk and they said they would check and get back to me. The nurse called me back and said he never got a report, he had only spoken to the path on the phone. I then called the path and after jumping through hoops got to speak the pathologist directly and asked him for a copy of the report. He also didn't have one.:angryfire And that was that.

I then took what i had from the original path report, including some blown up photos of biopies, to my dd's ped GI. She looked at them and said I definitely had EE, it was very clear to her especially with the rings. That is very typical of EE. So I got my dx from my child's GI and it's still not officially on the records. I asked my GI if I could start Flovent swallowed, which is one of the treatments for EE. He said sure if I wanted to, but did not know the dosage. At that point I fired him. I went to my allergist and she prescribed the Flovent for me.

Sorry those stories are so long. I just wonder how many patients slip through the cracks like that, because doctors blow them off or don't listen fully to what they are saying. I wonder, as a future nurse, how will I be able to work with such doctors. Do you ever ask if certain tests should be ordered if you think they should be but the doctor doesn't suggest them? Or do you just have to hold your tongue? Urrgh! What if you were a nurse with friend's mom's GP and you strongly disagreed that it's "nothing" and think you could save her life by telling her to go to ER to get checked out?

[jojotoo, RN]

Unfortunately, stories like yours are not uncommon. Remember, for every physician or nurse that graduated at the top of their class, another one was at the bottom. And there are many, once they pass boards, that never open a book again.

Too many patients are willing to just passively accept what their healthcare provider dishes out. This would be another example of our society's failure - or the individual's failure - to take some personal responsibility for their own health care issues. (But don't get me started on that issue!)

Good for you that you continued to question and research on your own until you received appropriate care.