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Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/11/2010 5:19 AM (GMT -7)   
We finally got the apt. at MD Anderson after dealing with ms incompatent for 4 weeks . 5 hour drive to Houston and made it on time. 7 am. After being quickly regestered and placed in a room to wait for the doctor we waited for hours. When the doctor came in she said she was sorry for the wait but had no info on what treatment my wife had had in the past. All she could do was schedule a pet scan and send us home . My wife called her doctor and the nurse there said that all that info had been faxed to the case worker weeks ago. Long story short, 22 pages of reports had never made its way into my wifes file and the doctor was stuck with no info. Ms imcompatent had struck again . Needless to say, I am not impressed with MD Anderson right now. We are going to talk to the patient advacate today but I am leaning toword saying to h--- with this and geting an apt in New Orleans. That may turn out just as bad though. I am very unhappy with all this and the stress is doing a number on my wife and I. Hope to have better results today , at least thats what I keep telling myself. I mean, this place is suppose to be one of the best. How long can the nightmare go on before they get their act together ?
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 8/11/2010 5:42 AM (GMT -7)   
That is just unacceptable! Can they re-fax the paperwork. It seems to me that would be the simple thing. But what do I know, I'm not part of the "system".

I'm sorry you are getting such a run around. The stress certainly isn't good for either of you. Keeping you both in my thoughts.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/11/2010 7:15 AM (GMT -7)   
I am so sorry Sniper. I agree with Zanne, they couldn't just quickly re fax the paperwork so the doc could have reviewed then and there. So sorry for this added stress, I know you both don't need anymore. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 8/11/2010 3:02 PM (GMT -7)   
I am sorry this is happening to you and your wife.

I strongly suggest you get a copy of your wife's file and take it with you wherever you go. Add any new info to it. A 3-ring binder with dividers helps keep you organized. I did this a long time ago when I was being treated for Lyme Disease. I had everything right there with me to show to the specialists and it really helped a lot. (I am NOT that organized now!)

flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 8/11/2010 3:11 PM (GMT -7)   
So, you drove 5 hours for a Cat Scan? Wow! So sorry !what a joke! I'd be so upset! And you weren't even impressed with the Dr. once you got there? My heart goes out to you two. I agree with Dagger..should have copy of the files...heck, why not just have it all tatooed on your body! that way if anybody looses it..you got it all with U!
Crohns, Diabetes type 2, Fibro, (Depression and Anxiety..who wouldn't?) Back surgery on herniated L-4 L-5 and S-1. Total of 13 surgerys!


Imran 200 mlg, Asacol, Colestid, Bentyl, Lamotil, Paxil, Amitriptlyne, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!

Glori
Regular Member


Date Joined Jul 2010
Total Posts : 42
   Posted 8/11/2010 3:43 PM (GMT -7)   
Have you seen the USB flash drives that can be worn as a necklace that can contain medical information? I'm not sure that it would have been a solution to your problem, but it might be worth considering when you are going back and forth between different medical facilities. Something to consider would be whether or not you actually want your medical information on something that can be lost. There was an episode of "The Doctors" that featured a heart-shaped necklace that contained a USB flash drive. Just an idea ..

Glori

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/11/2010 4:00 PM (GMT -7)   
I'm so sorry, Sniper.

That is wrong, on many different levels. I'm glad you're talking to the patient advocate.

Honestly, even if they didn't have the records to hand, couldn't they have had them faxed over asap?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/11/2010 7:11 PM (GMT -7)   
Im sorry too Sniper. As if you and your wife need all this extra pressure on you both.
I agree with everyone who said 'how hard would it have been to re-fax them'. Good luck with the patient advocate
((HUGS))
Take care to both of you
Jo
Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 8/12/2010 12:52 AM (GMT -7)   
i would have insisted a immediate fax from the dr at home. thats just terrible. please try and stay sane james.
randynoguts 



     http://www.geocities.com/randynogutsweb/

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/12/2010 4:34 AM (GMT -7)   
The re fax was made and they now have all the info. The doc. only sees patients on Tuesdays though. We have gone to the patient advavate yesterday and now the ball seems to be rolling a bit but still waiting on an apt. for the pet scan. The doctor has been contacted and has sent the reports to the pathologist . He will decide if there is enought tissue in the last biopsy or they need to do another one. Hoping to get info on the pet scan today. Still, I am not impressed but to start over in New Orleans would take longer so we will stick this out. Advacate says the doctor has already come up with a possible plan of action but wants to wait on biopsy results. Maybe we will get a break and wife wont need another one. Thanks for the hopes and prayers and support you guys give. I am trying not to go off on these people as that would not help my wife to see me lose it so I'm leaning toward control now and not anger. Knowing you guys care and support us helps me a great deal. Thanks to all again.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 8/12/2010 9:50 AM (GMT -7)   
I wish you and your wife all the luck in the world with this situation. (((((hugs)))))
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 8/12/2010 12:25 PM (GMT -7)   
Really hope this all gets sorted soon you and your wife have enough going on big hugs to you both Bevx
Diagnosed with crohns at 13 now 43
Salazophrine 2000mg daily,
Lomotil, 20mg citalopram & VSL#3.

“I may not be where I need to be but,
I thank God I’m not where I use to be “

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 8/12/2010 2:59 PM (GMT -7)   
Whatever gets sent to this "patient advocate" you're dealing with should also go to the doctor's nurse practioner in the future. And you should always bring a hard copy to the appointments. I've never had to deal with a "patient advocate" insinuating themselves between me and the doctor - in fact I've never dealt with one at all. I hope everything goes more smoothly for you guys from now on.

Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 8/12/2010 5:08 PM (GMT -7)   
Thanks for keeping us posted Sniper. I think about you and your Bride often. I will keep you in my prayers for a great outcome, as my friend had at MD Anderson. Wish I had it in me to pull some funny words out for you to break the stress a bit. I guess that's your job, but right now I just wish I could return the favor. God Bless you and best wishes the MD Anderson maze.
  Never go faster than your guardian angel can fly! I get by with a lotta help from my friends!Be Patient And Tough, Someday This Pain Will Be Useful To You.     
 Crohn's DG 2003 , symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Followed SCD Strictly 2003-06, then modified by adding new things 10-12 days apart to avoid delayed reactions in the form of arthritis symptoms. Scope on 2-5-09 was great! Doc says no symptoms,No scope for 10 years!!!
                                                                                    Margie11

Post Edited (Margie11) : 8/13/2010 8:04:07 AM (GMT-6)


mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 8/13/2010 1:04 PM (GMT -7)   
Sniper, I wish I could give you some great witticisms to help you cope and the most awesome right advice.........so hopefully it's the thought that counts. smilewinkgrin    I agree with the others, get hard copies and keep em with you, probably the best thing to help control your encounters.
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
 
 

Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 8/13/2010 1:12 PM (GMT -7)   
OH Gosh Sniper.

You know what I'd do if I were you. Personally go to all these people, stand there and physically request all the paperwork, the reports, the films and their notes. It's a BIG file sometimes but when its in YOUR hands, you know those idiots in the incompetent office can't screw up since you have a copy of them to hand over to the doc yourself.

I had a doc do that because he KNEW I wouldn't get the right care at the hospital where I'd just had a surgery. He have them print all my paperowk from THAT hospital and I carried all these films and this three inch think file on my surgery and their findings to the NEXT hospital and a specialist he wanted me to see. I had surgery the next day (it was something like four weeks between surgery 1 and surgery 2). I thought i was going to TALK to this doc. Oh no, I got erm...probed, he showed me what the problem was on the films themselves and he let me go home to gather my pillow and some comfortable clothes since he insisted on the surgery the next day. It was the best one I've ever had. With all my paperwork handed over MYSELF, I sat there and listened to the doc murmur to himself as he read through all those reports. Sometimes that's the way it has to go. Don't give up. I'd DEFINITELY request a new case worker though.

Good luck Sniper and I hope you and your wife get the care you need!
29/f
Allergies and Asthma my whole life: Benadryl
Depression and PTSD after surgeries and illness of 2003 (turned out to be Crohns)
Crohns Dx'd: February 2008: Pentasa, Hyoscyamine
Fibromyalgia Dx'd: July 21, 2009: Lyrica, Cymbalta, Hydrocodone, Prenatal Vitamin

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 8/13/2010 4:30 PM (GMT -7)   
It never ends, does it James? So sorry to hear about the stupidty of certain people entrusted with essential, sometimes Life and Death, information.
Best of luck, may everything work out for you..

Sincerely,
Matthew

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/14/2010 5:40 AM (GMT -7)   
Welllllllllllllllllll, finally got things straight yesterday. Test will be run monday and then we will go home for a week. Next apt one week later and by then we should have enough info for a plan of action.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/14/2010 7:48 AM (GMT -7)   
Yes finally!! Sending good wishes that everything works out well for you both. Hugs to you both!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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