What to do when no doctors are willing to help?

Rhansen

Rhansen

Jedi Council Member
FOTCM Member
A friend of mine is currently suffering from a lacerated large intestine and needs surgery to repair it - however he cannot find any surgeons willing to do the procedure. He has had many gut related issues, kidney issues, uses a colostomy bag, has hernia mesh, etc... He recently had surgery for recurring intesinal blockages (had trouble finding anyone to do this as well). Has been on disabilty for several years now.
I know he has contacted many hospitals both locally and out of state (i.e. Mayo/Boston/Chicago) without any luck. I suspect nobody wants to touch him because he is a 'high risk' patient.
Thought I would ask here since this kind of thing is way outside my wheelhouse.
Thanks for looking.
 
His best bet is probably going to be in seeking his general (primary) care at a university system with a large teaching hospital. Surgeons may want to help, but they don't want to take a chance in creating a worse situation in a very high risk case. I know there have been problems with mesh. It is extremely unlikely to find someone by just calling around. A team (surgery, anesthesia, internal medicine, renal) will generally want to examine and review records and history before making a decision on a case.
 
ohh that's very unfortunate for your friend.

I would carry on with the search, but who diagnosed him with the laceration and what did they tell him were his options in terms of treatment? Does he have insurance? I think that with his condition he's going to need to do some bureaucratic dancing around the system, hopefully before he lands at an ER.

Not sure I have much more insight into it, I truly hope he finds a way to get his issue addressed soon, it sounds painful.
 
He's already landed at an ER, I assume the ER doctor gave the diagnosis. He has to periodically go in to have fecal matter 'vacuumed' out...
According to my friend (Rob) the doctor told him he needs surgery. (note: all this info comes from Rob, I was not at the hospital)
His insurance is medicaid/medicare.
There is a university/teaching hospital 60 miles from here, and so far they have declined to see him.
One thing I find suspicious is that the last surgeon to see him does not want to now. Makes me wonder if Rob isn't telling me everything.
I will talk to him and see if I can get some more info.
 
Rhansen said:
He's already landed at an ER, I assume the ER doctor gave the diagnosis. He has to periodically go in to have fecal matter 'vacuumed' out...
According to my friend (Rob) the doctor told him he needs surgery. (note: all this info comes from Rob, I was not at the hospital)
His insurance is medicaid/medicare.
There is a university/teaching hospital 60 miles from here, and so far they have declined to see him.
One thing I find suspicious is that the last surgeon to see him does not want to now. Makes me wonder if Rob isn't telling me everything.
I will talk to him and see if I can get some more info.
Click to expand...
Hi Rhansen, If I may suggest, there is this Doctors Alliance created around the Covid issue. It might be a long shot, because your friends conditions might seem far removed and more critical than Covid but you never know. At the end of the day, someone reading an email or answering the phone might know someone in the position to help.
All the best!
 
I talked to Rob earlier, he tells me;
They (local hospital) assume he has a perforated intestine since the material they remove from the wound has the same appearance as what is in his ostomy bag.
He is septic, treatment has maily consisted of wound care (visiting nurses) and antibiotcs. If it gets bad enough he'll visit the hospital for more invasive intervention. This has occured at least once since september (I did not ask how many times).
The Chicago surgeon (worked on him last year) will not return calls.
He was referred to the university hospital (Iowa City) and told that they would not operate due to potential complications/scar tissue/hernia mesh (i.e. high risk). He was told they would only operate if no other options - as in 'on your death bed'.
Boston told him no - their beds are full of covid patients. :rolleyes:

I told him to keep 'beating the bushes'/be persistent and not to lose heart. He has been having suicidal thoughts, is obviously depressed and in constant pain. What a crap sandwich...

@Ina - I will pass that along. A long shot is better than no shot.
 
oh wow,

So he is currently at the ER and his condition has worsened, how old is your friend? and does he have any family that he can reach out to? I can imagine that having a single patient and his friend looking to get a difficult surgery booked is a hard sale, but his family might be able to add some weight to the requests yes?

I am sorry, it is a rather difficult place to be in for him and I can tell that you care about him and must be worried sick, I wish I had a better suggestion.

He has medicaid, is there anyone that he can reach out to in the organization that might be able to get things moving?
 
Rhansen said:
One thing I find suspicious is that the last surgeon to see him does not want to now. Makes me wonder if Rob isn't telling me everything.
I will talk to him and see if I can get some more info.
Click to expand...
I am sorry Rhansen about your friend. May be, having some reports of the tests will help to get better idea.
 
There's a karmic question how much you want to get involved. You could have him sign a medical power of attorney/advance health care directive giving you the power to have medical records released to you so you know what is going on.
 
@Alejo - He is not currently in the hospital, was sent home after they decided he was 'stable'. Not 100% sure of his age, IIRC he is 49. He does not know his (biological) family because he is an orphan. He lives with some very old friends of mine so we are his family.
 
It is a sad situation. This is far outside of my area of specialty. I have heard that no one wants to touch complicated mesh cases. There have been many problems with it. One issue is that US is a very litigious country and anyone can get looped into a case by getting involved. Another thing with high risk cases lately is that physicians and hospitals are rated on outcomes by CMS (Medicare and Medicaid). It is a big deal when a case goes badly for some reason (like infection, delayed healing, other complications), and the hospital has to eat any extra costs and stays and repeat admissions associated with the problems beyond what would be expected normally. These costs can be massive. It makes physicians and institutions very risk averse. I could tell you stories.
 
The only advice I can think of is to either call every Mayo Clinic and hospital (I know you said he called, but I would try every single one) or find a really good general practitioner and get a referral from them. Once he has a referral hospitals can’t say no to seeing him, they could say no to treatment but at least he will be seen and that’s better than nothing. Just keep getting referred to different specialists and eventually one might bite.
 
Rhansen said:
@Alejo - He is not currently in the hospital, was sent home after they decided he was 'stable'. Not 100% sure of his age, IIRC he is 49. He does not know his (biological) family because he is an orphan. He lives with some very old friends of mine so we are his family.
Click to expand...
I see,

thanks, it all makes sense now, as to why you feel so moved by his situation. And I suppose the only other piece of advice I have is to spend some time on the phone with medicaid and try to get something better booked eventually if possible. Because of his work situation, I think that would be his only option.
 
Update:
After much wailing and gnashing of teeth, the surgeon in Chicago finally agreed to do a corrective surgery. Rob seems to be doing well and has had no complications so far. He is scheduled to be released from the hospital on Wednesday.
 
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