URGENT--advice needed

[Krystenaj 7]

Hello all (apologies for the long post, but please help!)

I am new to the forum, but not to the surgery process. I have been working since November to get my surgery and I have a surgery date of June 28th with Dr. Prachand at University of Chicago.

The urgent part of this comes in here: I am having serious doubts about the competency of the team at University of Chicago. While I know Dr. Prachand is an excellent surgeon himself, working with his team has been a nightmare.

They have consistently forgotten to tell me things or order things. For example, after 3 months with nutritionist and getting other tests done (planning for a late April surgery date), with insurance approval in hand, I got an email saying they had forgotten to put a sleep study on my requirement list. While I didn't mind doing the sleep study in and of itself, the fact that I had done everything they said needed to be done and had insurance approval, I was a bit upset. So after that disaster and the ensuing complications of trying to get a sleep study and then getting a CPAP (because they told me that would be faster so I could get a surgery date sooner--I wanted to get the mouthpiece), I went to the PREP group. This was the most disorganize thing I have ever seen. It was 3 hours long, at least 30 people in a tiny room, and we covered nothing of any use at all. The psychology section of it mostly consisted of us breaking into groups to talk about ONE stage of the pre/post op lifestyle. This was not guided nor did we come back together---so I got feedback from OTHER patients ONLY about ONE stage and was left to my own devices on the others. The nutrition portion of this consisted of the nutritionist reading off a list and saying "oh scratch that one off" or "oh that's great, you can get it at Whole Foods/Trader Joe's I think." I was a bit put off by the lack of agenda for this meeting and, to be frank, the fact that the nutritionist only seemed interested in pushing her own blog and made it seem as though we could not be successful unless we shopped at Whole Foods or Trader Joe's--neither of which I have here in Northwest Indiana. The disorganization was astounding for what is supposed to be such a reputable program.

Monday of this week (June 13th), I had my preop appointments---which were dictated to me. I was not asked if that day worked for me, nor told how long the appointments would be. While this might seem minor, when I am trying to rearrange my work schedule, having a 9:30, 10:15 and 1pm appointment, I need to know lengths and such. I emailed and called to ask to no avail. I asked in the 9:30 appointment and she told me the 1pm appointment was 2 hours---I had to reschedule things during the time I had between appointments. This is inconvenient, but I'm afraid underpins a much bigger issue.

Next, the front desk INFORMED me that my next appointment (which should be 2 weeks postop) is July 7th at 1pm. Again, no asking me if I would have someone who could drive me at that time, nothing---just dictation.

While in one appointment she asked how I was doing quitting smoking---since I had not been told otherwise despite asking, I assumed that my preop appointment day was THE day I needed to be done. So while I had cut back significantly, I did have 2 cigarettes on Sunday. She then proceeded to tell me they would do a test and if I failed, then they would postpone my surgery.

The preop diet was emailed to me and I was never given any help or advice or even mention of it. Evidently it is just something else I am supposed to figure out.

The 2 hour appointment was 1 hour talking vaguely about the phase I post-op diet and then doing our consent forms in group setting. 4 patients, each with support person, in a conference room with her reading out our consent forms.

So I suppose my question lies here: do these seem like legitimate red flags to you? Has anyone had similar problems (or good experiences) with University of Chicago? I am afraid that if they can forget to bring up important things before surgery, then after surgery, what happens when they forget to tell me something that jeopardizes my health?

I am seriously considering cancelling my surgery, but I am very torn about the situation. I don't want to be in a bad support situation with the team after surgery and I feel totally clueless going in as to what I am supposed to be doing with the preop diet and how to prepare for the post-op diet.

[Seahawks12 1]

I would ask to talk to the surgeon. Also call your insurance co find out if you cancel would you have to start over. The most important issue is your surgeon and will he be following up with your care. My sister had same problems with Swedish hospital total run around.

[Krystenaj 7]

Thanks for responding. As weird as it sounds, I am glad I am not the only one who has had this experience. Unfortunately, the surgeon is very hands off. I actually did request a meeting a while back and had an appointment with him. I had some concerns about this surgery (technically this is a duodenal switch but in two stages) in that I did not want the second surgery, etc. He dismissed all of my concerns, including these about these issues with his team. I have only seen him twice--evaluation and my requested appt---and everytime I have another appt I see someone new that I have never met before.

I think I am, understandably, frustrated and just feeling very torn. I want the surgery and to be able to move forward but I am afraid of risking my health with the inadequacies I have experienced if they bleed over into postop.

[4MRB4PHOTO 3,900]

The good news is you still have a little time, more importantly, you have confidence in your surgeon's abilities.

The bariatric support staff sound like they are lacking a little.

Talk to your surgeon & your insurance company your concerns. Maybe even the staff to discuss some of your concerns regarding feeling like you are not being properly prepared.

I am sure you researched this procedure (pre/post WLS), but see what bariatric centers of excellence and the ASMBS recommend.

Good luck.

Edited June 15, 2016 by 4MRB4PHOTO

[Valentina 2,642]

Can you have your surgery with the surgeon you have your trust with and then switch to a different post-op group?

I have moved since my surgery and have been welcomed into the bariatric community in my new area.

It sounds to me that your present group is in need of a new coordinator. Want a new job? Really though, I would make sure they know --with documentation--just how and where THEY have failed YOU.

You could muggle through--trying to make suggestions for corrections as you go toward your surgery or just choose a different surgeon. Since you already have your approval, the set back shouldn't be too severe.

Things like this happening is just poor administration. It is senseless and certainly not patient friendly. Is this hospital a "Center of Excellence"?

Please, keep posting and let us know what you decide to do. We care.

Again, I am soo sorry you have to experience this during what is supposed to be a wonderful lifechanging journey. I'm rooting for you. Stay strong. !

[Qwalla 132]

Wow they do seem very disorganized to say the least. Not a very smooth program. I am now awaiting surgery approval after 6 months of tests,classes etc. My experience had a couple minor glitches but nothing like what you have had. I would certainly let your surgeon know of the problems you have had. Any descent surgeon would want the whole experience to go smoothly or his business would not be productive. I am glad you have a good surgeon because that is the most important thing. I do believe however a good surgeon would want patients to have a knowledgeable positive experience so you will have a great outcome. If the surgeon is not concerned with that...hmmm that would raise some red flags for me personally. Sorry you had to go through this. The process is very stressful when things go well and are organized. Best of luck to you and wish you only great things! Keep me posted! Your complaints to the proper people may help all the future patients I hope!

[gina171 626]

So.....would hate for you to postpone surgery BC of their loosey-goosey office procedures....since you say you trust the surgical expertise, how much support will you be needing from that STAFF post-op?

Can you get your nutritional backup through books, or forums, or through another nutritionist? If you had a medical issue you would go to the ER and they would notify your surgeon, so no staff there?

I guess what I am thinking is maybe the part they they were supposed to handle -- and admittedly handled very poorly -- is essentially over? And if you can find other support options post-op, maybe you can let the surgeon do what he does so well. And say so long to those disorganized folks in the office.

I thinking you def need to tell the surgeon though, that their disorganization and lack of focus almost caused you to cancel surgery all together.

Sent from my iPhone using the BariatricPal App

[Krystenaj 7]

The good news is you still have a little time, more importantly, you have confidence in your surgeon's abilities.

The bariatric support staff sound like they are lacking a little.

Talk to your surgeon & your insurance company your concerns. Maybe even the staff to discuss some of your concerns regarding feeling like you are not being properly prepared.

I am sure you researched this procedure (pre/post WLS), but see what bariatric centers of excellence and the ASMBS recommend.

Good luck.

I have definitely done a lot of research. They are highly rated by pretty much everything. My mother had bypass when I was younger and I am in science, so I have read every paper I can get my hands on and asked every question I can think to ask. I am trying to figure out who to contact as we speak. I don't want to cancel my surgery, but I am also in a place where I feel like I am totally "alone in the woods" as to what I am supposed to be doing or not doing. I'm also in constant fight or flight mode waiting for the next "surprise" to come at me.

[Valentina 2,642]

Thanks for responding. As weird as it sounds, I am glad I am not the only one who has had this experience. Unfortunately, the surgeon is very hands off. I actually did request a meeting a while back and had an appointment with him. I had some concerns about this surgery (technically this is a duodenal switch but in two stages) in that I did not want the second surgery, etc. He dismissed all of my concerns, including these about these issues with his team. I have only seen him twice--evaluation and my requested appt---and everytime I have another appt I see someone new that I have never met before.

I think I am, understandably, frustrated and just feeling very torn. I want the surgery and to be able to move forward but I am afraid of risking my health with the inadequacies I have experienced if they bleed over into postop.

It is your RIGHT to see your surgeon --one on one.

I realize that surgeons do their best "bedside manner" work when their patients are asleep, but your trust and confidence with his team--which ultimately HE is responsible for, is waning.

I would be a wee bit assertive and see your surgeon and exchange with him your concerns, experiences and confidences lost.

Good luck and stand strong!

[Krystenaj 7]

It is indeed, a center of excellence, thought I believe that to be a very low standard at this point.

I have wondered if I'd be able to move my post-op care to another center and I'm really not sure. It's something I need to call and ask about I suppose, though I'm not precisely sure who to contact. I'll have to do some looking.

I really don't know how much of their support I'll need after surgery, but based on what little I could gather from the meetings, it seems they have pretty strict diets and such that they expect you to do and follow ups with them. And so, if they are to be the ones helping me figure out eating after surgery and such, I am incredibly concerned.

I have also considered switching hospitals. I have I think 2 other options in the area, and it is becoming more and more attractive to consider that, though it would delay my surgery of course.

I do think I will call the surgeons office and/or patient relations after teaching a class I have coming up. I tend to agree that maybe (hopefully) the surgeon isn't aware that things are done so disorganized and could jump everyone into action.

[4MRB4PHOTO 3,900]

The good news is you still have a little time, more importantly, you have confidence in your surgeon's abilities.

The bariatric support staff sound like they are lacking a little.

Talk to your surgeon & your insurance company your concerns. Maybe even the staff to discuss some of your concerns regarding feeling like you are not being properly prepared.

I am sure you researched this procedure (pre/post WLS), but see what bariatric centers of excellence and the ASMBS recommend.

Good luck.

I have definitely done a lot of research. They are highly rated by pretty much everything. My mother had bypass when I was younger and I am in science, so I have read every paper I can get my hands on and asked every question I can think to ask. I am trying to figure out who to contact as we speak. I don't want to cancel my surgery, but I am also in a place where I feel like I am totally "alone in the woods" as to what I am supposed to be doing or not doing. I'm also in constant fight or flight mode waiting for the next "surprise" to come at me.

How do their pre/post surgery (and actual surgery) protocols, plans and recommendations compare to the WLS centers of excellence and the ASMBS?

[Krystenaj 7]

The good news is you still have a little time, more importantly, you have confidence in your surgeon's abilities.

The bariatric support staff sound like they are lacking a little.

Talk to your surgeon & your insurance company your concerns. Maybe even the staff to discuss some of your concerns regarding feeling like you are not being properly prepared.

I am sure you researched this procedure (pre/post WLS), but see what bariatric centers of excellence and the ASMBS recommend.

Good luck.

I have definitely done a lot of research. They are highly rated by pretty much everything. My mother had bypass when I was younger and I am in science, so I have read every paper I can get my hands on and asked every question I can think to ask. I am trying to figure out who to contact as we speak. I don't want to cancel my surgery, but I am also in a place where I feel like I am totally "alone in the woods" as to what I am supposed to be doing or not doing. I'm also in constant fight or flight mode waiting for the next "surprise" to come at me.

How do their pre/post surgery (and actual surgery) protocols, plans and recommendations compare to the WLS centers of excellence and the ASMBS?

So far as I can tell, they have sort of set the curve in these areas. I'm going to do some research on this more specifically though. I have wondered if its an example of setting the curve and then getting slack because you have such a name to ride on.

[Valentina 2,642]

The good news is you still have a little time, more importantly, you have confidence in your surgeon's abilities.

The bariatric support staff sound like they are lacking a little.

Talk to your surgeon & your insurance company your concerns. Maybe even the staff to discuss some of your concerns regarding feeling like you are not being properly prepared.

I am sure you researched this procedure (pre/post WLS), but see what bariatric centers of excellence and the ASMBS recommend.

Good luck.

I have definitely done a lot of research. They are highly rated by pretty much everything. My mother had bypass when I was younger and I am in science, so I have read every paper I can get my hands on and asked every question I can think to ask. I am trying to figure out who to contact as we speak. I don't want to cancel my surgery, but I am also in a place where I feel like I am totally "alone in the woods" as to what I am supposed to be doing or not doing. I'm also in constant fight or flight mode waiting for the next "surprise" to come at me.

How do their pre/post surgery (and actual surgery) protocols, plans and recommendations compare to the WLS centers of excellence and the ASMBS?

So far as I can tell, they have sort of set the curve in these areas. I'm going to do some research on this more specifically though. I have wondered if its an example of setting the curve and then getting slack because you have such a name to ride on.

The good news is you still have a little time, more importantly, you have confidence in your surgeon's abilities.

The bariatric support staff sound like they are lacking a little.

Talk to your surgeon & your insurance company your concerns. Maybe even the staff to discuss some of your concerns regarding feeling like you are not being properly prepared.

I am sure you researched this procedure (pre/post WLS), but see what bariatric centers of excellence and the ASMBS recommend.

Good luck.

I have definitely done a lot of research. They are highly rated by pretty much everything. My mother had bypass when I was younger and I am in science, so I have read every paper I can get my hands on and asked every question I can think to ask. I am trying to figure out who to contact as we speak. I don't want to cancel my surgery, but I am also in a place where I feel like I am totally "alone in the woods" as to what I am supposed to be doing or not doing. I'm also in constant fight or flight mode waiting for the next "surprise" to come at me.

How do their pre/post surgery (and actual surgery) protocols, plans and recommendations compare to the WLS centers of excellence and the ASMBS?

So far as I can tell, they have sort of set the curve in these areas. I'm going to do some research on this more specifically though. I have wondered if its an example of setting thecurve and then getting slack because you have such a name to ride on.

No excuse. It is their obligation not only to the community, but more importantly--TO YOU--the individual patient to become and live up to the merit of a "Center of Bariatric Excellence".

[Krystenaj 7]

Certainly not an excuse, in fact something to be ashamed of. But it does happen, and I've wondered if that's what is happening here.

I am definitely making some phone calls as soon as I am done teaching today.

[KristenLe 5,979]

@@Krystenaj From my experience working in accredited medical facilities for over 30 years - all it means is that they showed they were doing a good job and met the standards of care either through an unaudited application or during the brief site visit. It means very little to the quality of daily operations. I would call the Administrator of the Program and voice your concerns. The surgeon is probably an employee and has no control over any of these other areas. I would also notify the accrediting body with your concerns. I don't think I'd cancel surgery though -especially if you're confident in your surgeon.

Edited June 15, 2016 by KristenLe