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Handmaiden

Member
Joined
Dec 9, 2010
Messages
19
Reason
Loved one DX
Diagnosis
01/2011
Country
Uni
State
TX
City
Dallas Fort Worth
Hi friends,

To recap previous information I have posted about my precious brother....

My brother was diagnosed with bulbar ALS in January 2011. He has been on a feeding tube since June 2013, unable to speak since May 2013 and has been on a non invasive ventilator (Trilogy) for about 8 months. The mask from the ventilator has been causing facial breakdown as well as gathering mucous. He is also on a scopolamine patch to help dry him out.

Over the past several months due to his declining situation my brother has had a change of heart regarding moving forward with an invasive tracheostomy.

His insurance is through Medicare Advanced. There were 12 pulmonary doctors in the Medicare network that perform tracheostomies - but all have refused to do the surgery for my brother. We found a doctor - Dr. Bhatki in Dallas (not in network) which had agreed to do the surgery on Monday the 27th - or the third week of November.

We were told that the hospital would not agree to let the doctor use the facility...that being said, looking for someone to help us we got MDA and my brother's hospice Vitas involved - they were able to send information to the hospital and yesterday we were told the hospital had signed off. Initially there was some red tape hoops to jump through - have to terminate hospice in order to do the trach, then reinstate them once he returns home after surgery.

Now, today we were told that the doctor, after receiving all the medical history information from my brothers ALS pulmonary doctor (who doesn't perform surgery) that the doctor is now unwilling to perform the surgery. First we had a doctor and no hospital, now we have a hospital and no doctor.

Does any of this sound as confusing to you as it is to us? I did not know where else to turn as the doctor will not tell us why he is now not willing to do the surgery?

Is it possible that the surgery for a tracheostomy is unable to be done due to the advanced condition my brother is presently in? They consider my brother "Advanced stage ALS".

I thought that was the reason ALS patients elect to have a tracheostomy.....

Completely at a loss as to what to do, who to turn to, and how to have my brothers wishes carried out.

Thanks for the listening ear, the shoulder to lean on, and hopefully some next step direction....

With gratitude....
 
>First we had a doctor and no hospital, now we have a hospital and no doctor.

what a mess! have you checked w/ alsa too?

Our thoughts are w/ you and your brother.

Max & Sandy
 
In order to ethically perform a procedure, the doctor must know that the patient has some chance of benefiting from the procedure.

Perhaps the doctors believe he would not recover well from a trach.

I'm sorry to hear your brother is in this situation, but I don't see a way to grant him his wish.
 
Hi Max & Sandy,

Yes we did reach out to ALSA and they referred us to MDA for further action.
 
Wow, that is a tough situation. I wish I could offer some aid but do not have a clue. I have never heard of this. Does he have an ALS clinic that he ever attended? perhaps they know of a pulmonologist who would do the job. Also, have you been able to have a meeting with the doctors and see why they are refusing to do the surgery? maybe Atsugi is correct and they do not think he will survive the surgery or recover from it.
 
........................................................................................................................................ the doctor will not tell us why he is now not willing to do the surgery?

....


oh that is just wrong!
 
Barbie......we had a two hour initial consultation with the doctor who said he would do the surgery, only to find out today, after receiving his medical notes from his neurologist that he will no longer do it....no explanation. We did speak with my brothers respiratory therapist (who works with hospice) and he was just as surprised as we were. He said he would see what he could find out as far as why the doctor changed his mind since they won't tell us.
 
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