Help I Need Advice ASAP!


New member
I just moved and have been trying to get an appointment with the center in New Orleans but it's been a headache. They told me they needed a demographic page plus last clinic notes before they could give me an appointment. I called them to see if they got them in the middle of September because she said she'd call me with an appointment once she got that information. They hadn't received that info yet so I called medical records from my old center but they told me they faced the info on September 3rd so I had them fax it again. I waited and I didn't hear anything so I called Tulane back and they got the info but all they sent was the domographic page and my last PFT, weight, height, and vitals. She then told me that she might be able to get me an appointment one of two days in November and she would let me know which day after she talked to the doctor and she would call me last Wednesday but I haven't heard anything form her. She said because I've got other issues besides CF they need my medical records before they see me so I filled out the medical release forms my old center emailed me and sent them in.
I have been feeling really bad since August and have been trying to get an appointment with the doctor because I can't stand to go through the emergency room because I've had a lot of mistakes made in the ER. I've just been feeling worse and worse each day. Now it's gotten to where just getting dressed or even taking a shower makes me out of breath and exhausts me. I've been falling asleep even if I'm doing something for example I was using my phone and fell asleep and dropped it on my face. Other than the typical sick symptoms I normally get I've been feeling dizzy and extremely tired. I honestly don't know the words to explain exactly how I'm feeling except somethings wrong. I really need some advice on what to do. I've never been in Tulane before and I don't know their procedures for Cystic Fibrosis patients. Can anyone give me advice on what I should do with this big mess? And what's the procedure for inpatient care? For example is it the CF doctor that rounds? Is there a physical therapist? Are there any perks or privalages? I've had so many bad things happen in the hospital at the center I used to go to it makes me very nervous about the new center, so if anyone knows anything about Tulane's center good or bad please let me know.


Active member
I would suggest that you have the CF Clinic at your "old CF Center" directly contact the CF Center at New Orleans. I know, first hand, that the small community of CF Doctors have extensive contact with each other at CFF Conferences, for example. You might call the CF Doctor at your "old CF Center" and ask for his/her help.
I agree with Printer! Please contact your old center asap and see what they can do. Explain your health situation and ask that they contact a doctor or nurse practitioner to get you seen asap at the new center. Possibly they could even get you on the phone with someone to schedule an admit to the hospital rather than just waiting months for an office appointment. Then records can be transferred, etc but you could get started on some IV meds and/or other therapies as needed while they figure it out.

I agree showing up at the ER doesn't usually work. If you need to, do so and ask that they admit you to the CF floor/ward/etc and possibly you can then be seen by the proper team. Your health shouldn't suffer due to technicalities of paperwork. Hang in there!


Super Moderator
I'm having my own version of a medical cacophony at the moment so pardon my sense of having been at one too many one horse rodeos. Before CF took the wind out of my sails, my wife and I had worked our butts off running a business and dealing with an increasingly hard to manage illness, of unknown origin. Contrary to popular belief that having your own business is being your own boss, the truth is you are working for everybody from the client or customer on down to the employees. It's my responsibility to keep everybody happy and everything running. I won't go into what all we did but we took the colossal risk of providing the industrial equivalent of a heart-lung machine. Failure was not an option.

From having to make very complex automation operate perfectly, we went about fixing what's wrong with the way we approach medicine. Their system is broken. In my lifetime I can probably count the number of times my medical records have actually made it from one office to another on my hands. I'm sure they teach this somewhere in business school but you have to assume 100% responsibility for everything. Or so "they" say. If you know you have a flat tire, don't expect your car to go. The same applies to trusting the medical system. In my taking 100% responsibility for my doctors, I at least know that I have my ducks in a row.

Locate a fax machine and obtain its number. Call your old CF center and set a time to have the records re-faxed. When you make that call to your old CF center at the appointed time, be standing at a fax machine and have them fax copies of everything to you. While your at it, have them try faxing the information to your new CF center. As soon as you have confirmation that the records have been faxed to you, call your new CF center and tell them to look for records coming over the fax at the time they were supposedly sent.

When the new CF center fails, you have a copy of the records and you can make some copies and deliver the required records in the most reliable way you can. Personal delivery to a CF nurse-coordinator is a good means. Whatever you do, never, ever give the last copy away. Something that may be far simpler is to obtain a HIPPA release form from your old and new clinics, give each other permission to access your electronically stored medical information. We spent a huge load of our taxes to subsidize all medical practitioner's transfer of paper records into something that you can provide access to at will. These are your records and God bless them, they're still not making enough money so you might find them competing with Kinkos. In other words, they might charge you for the copies.

For decades, I have kept hard copies of all my medical records and like you I have faithfully sent records time and time again via fax with the identical result. When my old, old primary care doctor retired back in 1998, I walked away with about 200 pounds of my medical records. My old primary care doctor retired just a year ago and I have all my records from 1999-2015 on a thumb drive or memory stick. I have no difficulty accessing the records on the thumb drive but I don't know if all electronic medical records are readable without a special software package. It started out that way and CT's on disk I still get whenever I have an imaging test done. But, I have nearly every blood test, X-ray and record because I ask for copies at the time I have any tests done.

We discovered that a quantum singularity exists in the medical profession. Doctors do not work and play well with each other, all records sent from one doctor to another will not be accessible at the time of an appointment regardless of the number of times it is sent. Hand carry all the records you might need to every appointment. Buy yourself a couple of stamps. One that says "Original" so you don't give it away by accident and " Copy provided by ______ on______" so they can't charge you for your own copies when you move.

Honestly, I am so sorry for you. I just spent a year getting established with new doctors and if my experience is typical your troubles are just beginning. My suggestion on managing your records may sound heavy handed but I hate going to doctors when they waste my time. You might want to preemptively complain. Locate your old and new local or regional CF Foundation and give them a piece of your mind. This is just sloppy service. The CFF sponsors, promotes and profits from these centers for US. Our donations pay for all the services the CFF provide and they have dropped the ball so badly, I will only go to my CF center if I have to. Less than a year ago my rather sympathetic local chapter informed me they had in fact dropped the ball as far as anticipating so many longer living CFers. Like Adults?

Good Luck


New member
Good advice on record keeping. I've got a deeper history of my PFTs than my clinic does. I bring a chart with PFT data dating back to 2000 where my clinic is only looking back to 2008. All my records have been with the same clinic but when the clinic went digital the older PFT numbers got 'filed away' somewhere. I suppose getting records from the past would even be that much more challenging if I ever moved out of the area.