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Anyone else have Superior Mesenteric Artery Syndrome (SMAS)?
Digestive Health | Last Active: Sep 29 3:11am | Replies (132)Comment receiving replies
Just wanted to give a quick update on my daughter Shelby. We still haven’t gotten in at Mayo. However she had her TPN pick line put in about three weeks ago. And while it’s early in the process, Shelby has put on about 6 pounds. Doesn’t sound like much to most folks, but to the people on this board they know how important it could be. We had a Sunday family dinner about two weeks ago..........it was the first time in I don’t know how long that I watched her clean her plate. Fried chicken, mash potatoes, biscuits and gravy. Her spirits have been better too.
Like I said, it’s early, I know that. But I’m looking for good anywhere I can find it. We have an appointment with her Gastro on Friday. So maybe there will be more to share.
Thank you so much for thinking about my Princess.
Greg
Replies to "Just wanted to give a quick update on my daughter Shelby. We still haven’t gotten in..."
Here is the link. A lot better than me trying to explain it. She is hooked up 14 hours a day. We’re just lucky that her employer allows her to work from a home office. Any more questions feel free to ask. I will respond as best I can.
https://en.m.wikipedia.org/wiki/Parenteral_nutrition
Thank you,
Greg
@gregh Hello Greg:
Thank you so much for the update! I'm glad to hear that she is doing better. Yes, I believe that a 6 pound gain is worth celebrating!!
Please keep us posted on the progress of your Princess, we are all in her corner and cheering her on.
Teresa
@gregh Hello Greg:
I was thinking about you and your daughter. In your last update she was able to work from home and getting parenteral nutrition. I hope that she is still making progress. Also wondering - was she able to get an appointment with the Mayo doctor in Florida?
I would enjoy hearing from you.
Teresa
@gregh Hello Greg:
I hope that your daughter is still making progress and gaining weight.
I would enjoy hearing from you when it is convenient.
Teresa
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That's great @gregh! I am curious if you don't mind me asking what is TPN. I have been through so many GI drs and tests and never heard of it, or maybe the abbreviation. I posted on Jan. 11 about the possibility of it being vascular and MALS. It is very rare and overlooked. I feel for your daughter so young. Most of the MALS patients are female and young so just a thought. Well good luck to you. You can try calling the nurse of the department and tell them you had a call for an appointment. Maybe that may help better then just going through scheduling. I got through to my dr. once by saying he called and left a message and operator put me through. He did, but otherwise they don't list numbers. You are not lying since you were given an appointment "time". Just a thought. I understand your frustration. I wish you the best