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CFkitty
05-28-2012, 03:43 PM
I am 40 yr old female with CF, have had CFRD for 12+ years, Double Delta 508 mutations. I chronically culture strains of PA and MRSA. I have a lot of GI problems - GERD, IBS, DIOS, and Pancreatitis.
I've been suffereing for five years with chronic pancreatitis pain and nausea.
When the symptoms became chronic in 2007, we saw specialists here, went up to Boston for a second opinion. The diagnosis was established, but they also said there was nothing else they can do for me. My life is about controlling pain. On top of respiratory issues and everything else CF-related.
I'm looking for a fresh set of eyes and mind. My quality of life is in the bucket. Does anyone have suggestions on where in the US I can go to look for answers? I looked up the Mayo Clinic, but the closest place to me is a 3-hour plane ride. I'm in New England.

I need help. I wish there was a real "Dr House" like on the television show. Everyone else has given up on me. I cannot settle on living in pain for the rest of life. It's no way to live. I'm ready to do just about anything. There have to be answers.

Thanks in advance,
CF Kitty

Printer
05-28-2012, 04:07 PM
Kitty:

Who did you see in Boston?

Bill

Printer
05-28-2012, 07:03 PM
Kitty:

I sent you a personal message.

Bill

melx
06-03-2012, 12:54 PM
I know you dont sound too hip on traveling for Mayo but my CF doc recently told me to see Dr. Michelle Lewis (GI doc) at Mayo Clinic in Jacksonville, Florida. From what I have heard she is very good and specializes in CF GI issues. Especially enzyme issues. She has some CF research under her belt too. So it might be worth the plane flight.
I live in the area and am on the waiting list to see her sometime this summer.

melx
06-03-2012, 12:58 PM
Sorry, double post.

melx
06-03-2012, 01:07 PM
Sorry I meant to say I understand one of her primary focus is in CF Pancreatitis

AUG19DW
06-07-2012, 03:28 PM
I will say this. Every GI in our area and even 3 hours away at Duke Univ. in NC gave up on my son. But he had gotten to the point of 24/7 pain. All they said was deal with pain management and there was nothing more anyone could do for him. Honestly Pancreatitis is worse than CF anyday in my opinion. This child had to stop going to school at age of 15 because of it also. Homeschooling he couldnt even do because of the severity of the pain. CF dr's didnt know what to do with him either. He has the Double Delta 508 also and so does my daughter. So I took it upon myself to research Pancreaitits and I found the yahoo website for the pancreatitis group and they helped me tremendously. I found Dr. Sutherland at the Univ. Of Minn. that did the Total Pancreatectomy with the Islet Cell Transplant on my son 02/21/08. Now just to let you know this was a last option which we were at. This is a major surgery but we were out of options and he was on heavy narcotics at 15 thru 17 yrs. old. He even had a Dilaudid pump in a carry around bag at the end before the surgery. Fentanyl lollipops were ruining his teeth also. Dr. Sutherland is the one that started this procedure in the late 70's and by the time he had gotten to my son he had done a little over 200 of these surgeries. Of course none of the CF dr.'s or GI dr.'s approve of this surgery but you know what we didnt care at that point. My son even thought of suicide alot due to the pain for years. He had no life or friends to come see him and he stayed at home all the time or my cousins house while I worked to be on suicide watch. He had no life at all!!! So after the surgery it took a year to wean off all the narcotics but he then became Pain FREEEEEEE!!! It was wonderful to have him enjoy life again. So that was 02/08 and now 4 yrs. later he is working and 21 now and loving life and engaged. He does have some GI issues, which of course due to the surgery no GI wants to touch him or knows what to do for him but whats new!! So if you are at the point of no other options contact the Univ. Of Minn. and they will let you know if there is a surgeon near you that is doing this surgery now. Their have been a few that studied under Dr. Sutherland that have brached out to hospitals across the U.S. I know of one now in Arizona, and VA.
If you need to talk to me send me a private email to [email protected]

katethekid
06-08-2012, 02:30 PM
I'm not sure of a team that is near you. I have seen a pancreatologist at the Mayo clinic in Jacksonville Fl named Dr.Bishop. I've also been to MUSC Medical University of South Carolina in Charleston. Dr. Peter Cotton and David Adams are awesome there. Dr'Adams has no bedside manner, but he is one hell of a surgeon. He performed my whipple and puestow.

katethekid
06-10-2012, 01:45 PM
Melx is talking about the same doctor as I am. I guess she got married since I saw her last, it has been years. Michelle is now Dr.Lewis, not Dr.Bishop. She is the best and definitely worth the trip if it's possible.