I am NOT going to Mayo, Rochester on Monday. I was just fine with it til that "whatever" nurse called to go over history and medications. She got shall I say "testy" (not the word I wanted but it will do) because I read the med too fast, or she couldn't spell them...then I had too many adverse reactions , and I DON'T remember everything they caused....how hard is it? Just don't give them to me!!! What nurse can't spell vistaril??? Did I have any abd. surgery? Do you have my chart?? Yes....ok. And as far as I can tell they herd ya through there like a bunch of cows( I live in the Mid-west- although I've heard they have "happy cows" in California. Maybe someone could confirm that for me, its on all the TV adds, Happy Cows in California)I am not going! I do not want a MAYO doc, I don't want any doc ! and I certainly do not want drive three hours to be treated like a piece of meat.My scope might be at 1230. my doc visit at 430....what am I supposed to do in between? I know I am a raving lunatic. I appreciate your understanding, (or good natured laughing could be helpful as well). BUT I'M STILL NOT GOING!!
LoriP

Can't say I can blame you. I wouldn't let them touch me with a staff that is apparently inept and rude. Is it feasible to find a good doc and travel to Chicago for J-Pouch related medical care?

Thanks , LuckyOne, Chicago is about 5 hrs out. And I wouldn't know where to begin to find a doc...actually my doc is not that bad, (actually she recently moved here from Chicago). But Mayo Staff are nasty. There is NO WAY that this is going to work!
LoriP

Lori,
Forgive me for saying this but you do not know who you were talking to.
I have ben through this hundreds of times for myself and Chris. You are being irrational.
Granted this was not handled the way you think it should be but you aren't going for the nurse or other admin staff. It is the DR.
We live in a world filled with incompetent people and we all have to deal with them.
You are only spiting yourself. They don't care if you come or not.
You should give this more thought.
Unless you want to fly to Cali or Ohio.
We waited 10 hours in Ohio for tests while Chris sat in a wheelchair with excruciating rectal pain after being on a plane til midnight, not arriving at the hotel ti 2 am and had to be at the clinic at 8 to wait all day!
Dr Fazio was late and we waited 4 hrs for him.Chris was in the ER for 5 days because they didn't have a bed.
Then there was Amr who was told to come from Egypt, OOPs! mistake. Sorry, go home,at his expense.
So, take a deep breath, try to remember everyone is not as smart as you.We all know more than most of the staff and Drs!
Do what will get to the bottom of the problems.
Write it all down and fax it next time!

I had both surgeries at Mayo, and what you describe couldn't be more inconsistent with the care I got there. The staff are definitely reserved--it is Minnesota, after all! But I didn't encounter any rudeness or ineptness--quite the opposite.

It's also true that they do bunch appointments together in one day, but they do it to try to accommodate people who come from afar. I didn't feel "herded" at all, especially compared to my experience at the major university teaching hospital a block from my house. (Had not really lived until I tried to answer questions about stool consistency from a postdoc researcher in the waiting area of my GI's office while not subjecting everyone in the room to the gory details--the postdoc seemed not to care either way!)

When I call Mayo, I get a live human being every time, not a voicemail menu or an answering machine. Everywhere I went, they gave you a vibrating pager to call you in instead of calling your name--it meant you could walk around, and things were quieter and calmer than in big, busy clinics. Seems like small stuff, but it really helped me to feel like they "got it" about the details, and I trusted them more. For me, it turned out to be worth it.

If you're staying in a hotel nearby, it will be easy for you to get back to the hotel to rest between appts. (or take the historical or art tours of Mayo, or listen to some of the awesome "Arts at Mayo" music in the main building entryway).

But those things are all add-ons. The point is that the care, in my experience, is absolutely fantastic. You may have gotten a weird nurse, but don't let her or your reaction to her cut off your access to the whole facility and its staff. They really know what they are doing.

Good luck!

This message has been edited. Last edited by: Charlotte Gilman,

I like my doc.....but I'm still NOT going. Maybe I'm a little stir crazy, do you know that beyond this board I HAVE NOT SPOKEN TO ANYONE in weeks. I'm not sure this counts as talking,well sort-of. I do not have one friend in all of Wisconsin. and i'm not going to Mayo and I don't want their "care" and from what the nurse explained as their procedure,( its just a scope, should be no big deal, I've had plenty...) there is no way I'd get through it without losing it. Well, thanks for taking the time to respond anyway.
LoriP

Holly- I know I'm irrational. However am finding it a little difficult to get grounded.

Lori, I know how hard it is to feel grateful or positive about care for a disease I never wanted to begin with. I'm thinking of you.

Don't hesitate to pick up the phone and call someone (even outside WI!) if you feel like it would help.

No reason you should go if you don't want to. I think that people will go to whatever lengths are needed, if they think it is a necessity. If you are OK with the way things are, why go?

As far as the phone interview goes, I wouldn't get your panties in a bunch too much about the questioning. I had recent procedures that were not j-pouch related and in one morning, I had several different staff members ask me the same flipping questions over and over, as if the previous one did not document the answers. Basically, everyone has their job to do, and part of it is filling out their required forms. Usually it is faster to just ask the patient than to get it all from the record. Of course, there is no reason to be testy or otherwise unprofessional.

But, bottom line, if you really needed or wanted to go, you'd probably overlook this transgression and hope for the best when you are face-to-face. I think the bigger tragedy is that you have no one to really talk to nearby. Make sure you come here often to vent as needed. (yes it DOES count!)

Jan

Hi Lori,
We took our daughter to Mayo, Jacksonville, and they follow the same procedures as MN. Think of all the preliminary stuff as jumping through the needed hoops to get to the doc who can possibly help you get some answers.

We made a couple of visits to the Mayo and did feel like we were herded from place to place, but really, they do that to accomodate the out of towners...and we appreciated because we live so far away from the clinic. Labs, MRI's, and x-rays were done all in one day and pretty incredible really...and because of that, I'm sure they become desensitised to a degree, so see it for what it's worth...access to top notch doctors.

In the end, for us, we saw several doctors, ran her through several tests, hotel and gas $, and in the end, was actually very disappointed in that we were told "there are no magic wands to fix this" and left disappointed, BUT, we did get further in her care and left with a clearer understanding of how extensive her osteonecrosis was with more x-rays and MRI's to push us to keep looking for someone else who could help...and we did. So they were a stepping stone in the path of her treatment and don't regret going.

While there, I wished there was a hair/nail salon inside the building so we could have passed the time..now THAT would have been a great way to pass the time

hugs,
Elise

I think the better approach is to just send the patient a questionnaire and self addressed envelope to mail back, with questions such as these. That way you don't have to worry about personality issues, ability to spell, etc. It's also more patient friendly in some ways because people can complete a questionnaire at their leisure and after reflecting on the questions, whereas with a phone call like this, the patient may be in the middle of doing something, distracted and not able to "think on their feet" as needed to answer these questions.

I am going to see a new gastroenterologist here in Connecticut for a second opinion on my "unknown form of IBD." His office sent me a questionnaire, asking all the same questions that the Mayo nurse asked LoriP. I took my time filling it out, and also sent it back with a detailed letter summarizing my 36 year history of IBD in pithy fashion with all the treatments and medications, their effects, the key surgical and test dates, and the important recent events.

There is something to be said for telephone demeanor. I recall when I started practicing law with a small firm in the early 1990s, we had a secretary who was an absolute crackerjack typist and very astute in terms of doing normal paralegal tasks, but we had to relieve her of her phone answering duties because her telephone demeanor was so dreadful. Part of it was her speaking voice, which was naturally nasally and whiny (in a really awful sounding way), and part of it was her less than cheerful tone. However when we kept her muzzled and behind her desk, she could perform swiftly and accurately any typing, dictation or even drafting of simple pleadings that we needed.

I think Mayo has to learn to assess these things a little better as well. Some nurses are better for these kinds of tasks than others.

This message has been edited. Last edited by: DJBHusky,

Also keep in mind that it's not always a nurse asking the questions - sometimes it's an intake clerk whose job is to write down your answers. I've not been to Mayo so maybe they do have nurses doing the phone intake but my experiences have been as mentioned above... receiving medical history forms in the mail prior to surgery. But that's only a luxury for planned procedures.

My oncologist's office staff is completely incompetent which was frustrating at first but as long as I'm diligent in doing what I need to do and being sure the blood test orders are correctly written by them, I just pay attention to the visit with the doc. It's still frustrating to watch them decide where to order lunch right in front of me while I'm waiting to pay the co-pay but I try not to sweat the small stuff anymore. Good luck!

Thanks guys....DJBHusky, practical as always, I have settled down a bit. Talked to my family doc, he agreed , no Mayo. They might be "the" place to go but they are not equipped to handle my unique issues. Anyway, thanks for the support during my totally wacked-out irrational rant. Jan, you are always so calm...and you are correct, the strife and frustration of seeing this doc is NOT worth the hastle. I am as good as I'm gonna get, it was just a stupid check-up, that I do not want to have. I appreciate you all, in my little computer world....(you are real people , right?)
Arizonafour- like to give her the benefit of the doubt, but she did identify herself as "nurse". She called at the end of the day and unfortunatly my case was alot more complex than I think she wanted to handle while the clock was ticking to punch out time...just my guess, my head is starting to clear somewhat.
I am embarrassed that you all now know that at times I'm a total nutcase, most of the time I'm fine....but when I mention PTSD, well it does happen to be on the severe end of the scale.(sigh) And I ranted, and now I'm embarrassed.
LoriP

Lori,
Unfortunately, you cannot take all the honors of being any kind of nutcase.
I am sure there are many of us. I know I am one at times who goes off the deep end.
We all have bad days and coupled with our fears, anxiety, other people's lack of understanding and medications, don't get me started. When I took prednisone NO ONE would come near me.
Don't be so hard on yourself.
Oh, and yes, we are real people.
That's why we are all here to listen to the rants and raves and help and support each other since no one else understands us!
FREE THERAPY!
Take a deep breath as Jan says, this too shall pass.
Can't wait til the full moon next week.haha

I chose a different surgeon to do my takedown because of stuff like this! When the first surgeon asked why I didn't come back to him, he seemed shocked at my response! Other patients had told me they had the same experience with his office staff. They just hadn't told him. When people ask why I had two surgeons I tend to say, "I fired my first surgeon."

I live within an hour of some of the top medical centers (Stanford and UCSF), and even if my medical plan allowed for me to go there, I probably would not have. When I was sick, the last thing I wanted to do was to hassle with a teaching hospital and have a constant parade of students and residents coming through to have a poke at me. As long as I had confidence in my chosen surgeon, I did not need the superstar (who probably wouldn't even be the one performing the surgery anyway).

I have a family member who had suffered with GI problems for decades and never was properly diagnosed. It practically broke their bank, but she and her husband made a trek to Mayo, spending weeks there. She returned knowing no more than when she left. It was not until she was seen by a local doc that she was finally diagnosed with Crohn's and started on Remicade. She is now finally getting some relief.

Personally, I think that if you want an expert second opinion, I'd go with the remote second opinion at Cleveland Clinic, where only your records need to travel, before packing the bags and heading out into the unknown.

PTSD can be a real bugger. I hope you are getting treatment for it and not letting it consume you and keeping you housebound.

Jan