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lisaann1170

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The neuro and speech therapist finally convinced Dad to get a consult with a GI specialist to talk about getting a feeding tube. The PEG procedure was scheduled for next week Wednesday...notice that I said WAS scheduled.

The consult was a disaster.

The GI doc had never met my dad before.

He talked about how feeding tubes are common end-of-life options for cancer patients. Of course, this led Dad to think that we're either (1) saying he's at the end of the road, or (2) jumping the gun.

The GI doc asked if the neuro recommended the PEG because he anticipated some sort of rapid decline in Dad's health. How can I answer that?! And, should we wait for a rapid decline?!

He also said that if we chose to have the feeding tube placed in the future, Dad could get scheduled in 4-6 weeks. Has he NEVER had an ALS patient?!

He said that 1 in 100,000 patient have complications including a punctured esophagus. And I quote, "We've done more than 100,000 so you could be the one."

The GI doc turned to me and said, "If he were my dad, I wouldn't do it." Great.

Dad cancelled the procedure.

We got in the car and he choked on his water. He's fine, but I wanted to scream.
 
Oh Lisa,

I feel so sorry for you and your dad. It pisses me off that some doctors can be so narrow and callous.

Go back to your neuro and give them a blast of shit for recommending such an ass-hole.
Tell them to give a refferal to a surgeon that knows what a PEG means to an ALS person.

Ask the neuro "What would you do if it was your parent sitting there?" Make it personal.

Now , tell your dad , as well as most other PALS here , getting a PEG is a good thing.

Glen
 
Lisa,

That was a disaster. Does your dad attend an ALS clinic? If so (I hope he does) call the coordinator and ask who they use for their patient when a PEG is advised. My clinic gave me two names. The one I chose was very familiar with the whole ALS scenario.

It probably won't be easy to "fix" what this insensitive doctor did, but, you dad will continue to have problems drinking and eating, so its not like he can shove it that far back in his mind. If you can find a way to let him understand that one of the main purposes of doing it early, is so that it can be in place for "if" he chooses to use it, that should help. You could also explain how he could use it even just to get more water in, as water is such a chore to drink.

Good luck to you, dealing with this is hard enough without doctors making it harder.
 
That is absolutely ridiculous. That doctor is an idiot on so many levels. One of the problems I ran into with my Dad is that not many medical professionals (and I work with a lot) have experience with ALS. Having said that my Dad's PCP nor the GI doc had treated a patient with ALS but bless them they actually called and researched the next step and Dad got what he needed most the time over the phone without having to go to the office.

As a daughter of a man who did not want a PEG, I can only sympathize with what this doctor has done to your plight to help your Dad get what he needs and that makes me angry right along with you.

Having said that, you can't give up - I feel confident you never intended to do so. The neuro doc needs to know not to refer anyone else to that a** and that you need a new GI doc. It is possible to suggest/ask the neuro doc to call his colleage the GI doc to schedule an appt for PEG consult and review your Dads needs prior to the appt so the docs are on board with the treatment recommendations.

After reading your post I wanted to scream right along with you.
Empathy from KY.
Dana
 
What a butt (PG rated) that doctor is. I wish I lived closer to you so I could tell this butthole (PG again) how he made you and your family feel. From what I have read about the PEG, it most certainly is not an end of life procedure. It assists people in keeping their weight up and getting liquids when they are no longer able to do so by mouth. I hope your Dad changes his mind and you can find a doctor who isn't such a donkey butt. There I am finished with my little tantrum now. Good luck, I am praying for you and please let us know how everything goes.

Dana (the other Dana)
 
Another example of the god complex i some Doctors. I just hate that you had to go through this, especially for your dad.
I remember years ago I was having severe pain in my side and went to the ER. The ER doc said and what is your problem today? I said I think my appendix needs to come out. He flew off the handle and told me quick, I'm the )^)^_*&_=-= Doctor here ands I will tell you what is wrong with you. I said all I had was gastritis and sent me home where 2 hours later my appendix ruptured and I had to have major surgery.
Typical example of they know everything, They Think, and you know nothing.
Hey I know my own body, and I know when something is wrong. I have VA Doctors now who have never even seen a ALS patient. Oh goody, what fun.
 
Oh geez Lisa! That GI must have gone to the same care and compassion class as the neuro that told Glen he had ALS and no follow up was called for! I am learning quickly that doctors fall into two categories: ones that are familiar with ALS and are generally very knowledgable and caring, and doctors that have never seen ALS and are scared of it and that fear comes out as callousness towards a patient they know they can't "fix."

I know too well that "choking on his water" thing.. I hope that you can find another GI and get another opinion. We're thinking of ya... hang in there!
 
I guess he is of the same ilk as the neurologist at Hopkins who, when I told him I missed kayaking, went off for a full five minutes on how he hates kayakers. He wasn't joking.

He asked me what kinds of things I couldn't do that I used to be able to do...

< s i g h >
 
Lisa,

Wow! This guy is actually practicing medicine? I'd be leaving his office quacking like a duck!

Roadie, I'd be tempted to return fire on that guy. Hard to believe a guy like that is at Hopkins.

Zaphoon
 
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roadkill do you get a different doc or at least get it settled .
lisann-write the doc a letter explaning why als is not cancer and why peg's are needed earlyand that he just made your dad feel his life was about top be over maybe with a little guilt he will go learn
 
I agree with writing idiot-doc a letter. Find out who his supervisor is (yes... they DO have to answer to someone) and copy that person with the letter, along with a copy to the doctor that referred you to the jackas...er... Dr Jack. I'd think the hospital board of directors would be on that copy list as well. As CALS we need to be advocates... and sometimes we need to be loud, squeaky, angry, annoying advocates! We're all behind you, you know that! When we were having trouble getting a second opinion... I wrote our health plan's member services department... I named names and threatened a grievance procedure. I sent that e-mail at 8:30 pm one night and by 8:00 am the next morning, our doctor's supervisor had personally sent the referral. Be the squeaky wheel. Your dad deserves that!

hang in there... we're behind you all the way.

Hugs to you and your dad.
 
roadkill do you get a different doc or at least get it settled .
lisann-write the doc a letter explaning why als is not cancer and why peg's are needed earlyand that he just made your dad feel his life was about top be over maybe with a little guilt he will go learn

sry about spelling can not fix the way i typed i put a p at the end of to - be over , was not suppose to say top(lol) was very tired and could hardley see anymore
 
Just to help you a little when you post something there is an icon at the top right of your post that has a check mark. If you click it, it will check your spelling for you. Also on most Internet explores go to the tools icon and click and you will find iespell that will also check your spelling.
I hope that helps.
 
Well Lisa , I can only repeat what others have posted . I was told that it's better to get the PEG early before it becomes an emergency option , and before lung function is too low for the sedation . I have one and it's so welcome to me . The worry of having to eat and drink choking has gone , and I can still try stage 2 custard consistency when I wish to keep my taste buds happy .
That doctor is atrocious honey , and obviously has no knowledge of ALS/MND . x
 
Follow up...

I've created quite a stir at the clinic. :) (Yup, I'm proud!)

First, Dad is a veteran, so this happened at a VA hospital. Fortunately it's one with an ALS clinic and the neuro there is fabulous. I called him (the neurologist) Monday and he made a few phone calls. Currently, I'm awaiting a call from the director of Gastroenterology so she is better equipped to talk to the doc we met and "educate" the misinformed doc.

After some research, I found out the doc we met with was not and would never have been Dad's surgeon. Instead he is a medical "fellow" who was simply supposed to explain how the PEG tube would work in conjunction with Dad's ileostomy. He was not to give his recommendation for or against the procedure as that had already been decided.

So, I'm attempting to reschedule the procedure and circumvent the ill-informed! Dad is still apprehensive, but Mom fully supports the feeding tube now. She was skeptical before. After reading PDaddy's experiences, I want this done NOW before it's no longer an easy option.
 
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