Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 In a message dated 3/3/01 5:11:32 PM Central Standard Time, liamhoha20@... writes: > . My gall bladder, > spleen, 2/3 pancreas, some of my stomach, diaphram & liver have been > removed. I am insulin dependent now, take enzymes, stomach & pain > medication. > > > > > > > goodness - you've been through the mill so to speak. do you still have a portion of your liver? did you have other problems besides pancreatitis?? glad you've found this group. welcome. where are you from? your new friend, debbie (arkansas) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 Hello, My name is , welcome to the group. I would have liked to met you under different circumstances, but if we had to meet here I guess it is to be. I am 24 with Chronic Pancreatitis. It is upsetting welcoming someone else to the group, but you will hopefully get a lot of questions answered, and great friendships here. Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 Sharon Welcome!! I was thinking of your recently, and I was going to email you again. (Kerry from the FOD site connected us around Christmas time) I hope that you find support through this group, and I hope both of your daughters stay healthy. Kerry and I are both going to go to Dallas, and I look forward to meeting you there. Sincerely, Bridget Mom to Owen, 3, highly suspected Mito, Global Delays, Hypotonia , 9 months and doing well (thank God everyday!!) New to group Hello,My name is Sharon Fisher. I am new to this group. I have been reading the messages for a while though. I was afraid to write in case I didn't belong. I have been on the FOD suport group for over a year now. Let me tell you all a little about us. We have 2 daughters. Our oldest, Isabelle, was diagnosed with a Fatty Acid Oxidation Defect, probably LCHAD, in October of 2000. We have since learned that she does not have LCHAD or any of the known FODs. Our metabolic doctor at Mayo feels that she definatly has a metabolic disorder but he says that it could be an unknown FOD or a Mito. If you want to read all about us Isabelle's strory is on FOD site at www.fodsupport.org. We just recently found out that she is allergic to milk and has asthma on top of everything else.Our other daughter, Rebekah, tested negative for a FOD at birth through both a blood test and a skin biopsy. The problem is that she wasn't sick when they did the tests. Also, since we don't know for sure what her sister has she could very likely have it too. She just turned a year last month and she has not had any MAJOR illnesses. She has had a mild flu a couple of times and dropped her sugars into the 50's but we were always able to get them back up with soda pop that she easily kept down. Our dr thinks that she migh be allergic to milk but no test has ever been done to confirm it.So anyway, I have enjoyed reading all of your letters and look forward to meeting you at the UMDF thing in Dallas. We live in Nebraska now but are planning to move to Dallas in June. I couldn't believe the coincidence. Thanks for listening and I will talk at you all later.Sharon Fishermom to Isabelle (3, unspecified metabolic disorder) Rebekah (1, ?)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Hello Everyone. I am new to this group. My name is and I am almost 11 weeks post op (Open RYN). As of Thanksgiving I had lost 50# and have only had a few complications. I am now dealing with the flu which has really got me down and out but I will survive!! I am not able to drink any of the protein drinks. I take about 2 sips and then I feel sick to my stomach (pouch LOL). I am in the process of looking for things that are high in protein that I can eat to get my protein in. Any suggestions? I am getting about 50-55 oz of water down each day and am working to get in more in the near future. The dr put me on sudafed yesterday for this flu and it is really drying me out which is making me want more water than before. I am looking forward to being apart of this group. God Bless Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 Hannah, this is excellent. I've wondered how I'm going to do with the protein, and you've spelled it out. I've never been too much on meat, but had some chicken today that was wonderful. I'm going to start counting tomorrow. Thanks! Joan lap RNY 11/18/03 Dr. Higa, Fresno, CA 282/250/140 Re: New to Group Hi , I was 11 weeks post op on Monday(had my surgery on 9/29/03)...I had a really hard time with the protein drinks and eventually gave up on them...they hurt my tummy so bad!!! I am also just getting over the flu(boy, let me tell you...it kicked my butt for about 3 days)...Anyway, as for me and protein, we are best friends...I always eat my protein, I start off with a SF Instant breakfast with skim milk(approx 12 grams of protein), then I have a boiled egg(7 grams of protein)...I used to eat one scrambled, but they would get cold and become very unappealing, so I could never eat a whole one. Drink more water, then I have some string cheese(which I think is about 7 grams)...for a late lunch, I usually have some chicken(about 5 grams,on the way home from work I have another cheese (another 7 grams)...for dinner I usually have some turkey and some cottage cheese(which i think is about 10 grams)...and i have some milk before bed(5grams), in between i drink my 64 ounces...that gives me 53 grams...so i figure i am as close as I will ever get...I of course, make adjustments, sometimes I have just beans and cheese for dinner, or cottage cheese with 2 peaches for a snack. Since I have been sick, I have slacked off, but I did make sure that I got my water, the way I figure is that, I didn't eat much meat, and couldn't have milk or cheese before surgery, so I don't think that I was taking in as much protein before as I am now! For some reason I am no longer lactose intolerant(that was a strange thing, I cannot explain). Sorry so long, but maybe this will help... Hannah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2004 Report Share Posted April 10, 2004 Cheryl, I know how hard I have made it for the people around me. I never meant to give them a hard time, but my brain just dosen't work the way it used to. I lived on an emotional roller coaster and I'm sorry to say that I took a lot of people I loved on the ride with me. It was/is very hard to find out that I was now DISABLED and things were probably going to get a lot worse! Will he join the support group? I know that in the begining ( about nine years ago ) the Internet was a real lifesaver to me. A friend lent me a computer and I learned how to " Surf the Net " . I had very little computer knowledge, but when I found out that you could find almost anything there I was hooked. My quest for medical information was almost all consuming and I started to become easier to live with. I saw a Shrink after dragging my feet for months and I even started Therapy. If he will talk to the group or just to any one of us, maybe we can help him understand what's going on with him. He can email me at pacoepi@... or I'll give him my phone number if he would rather talk on the phone. I'm a 54 year old male and I live in NY State about an hour plus from the City. I know it's a hard thing to deal with, but I think you'll find a lot of friends here willing to try and help the both of you. I'm sure that there are better qualified people than me, but I'll sure do my best to help. Sometimes just learning that your not alone helps a lot. I'm still hard to live with, but I've learned to say I'm sorry and thank you a lot. If it weren't for the few friends I have left I probably would be out on the street. Do what you need to do, but try to remember that it really isn't him giving you all the grief, it's the Horrendous disease that he has. frankE, the MadMystyk pacoepi@... > > Cheryl, this can be the side affects from the steroids especially > if he is on Prednisone. > > > > The TIA'a can also affect him as well. > > > > Good luck and you may want to ask his doctor for the side affects > or better yet, get his medicine bottles and look up the meds on the > internet. You will find a lot of info on them. > > > > Sharon > > > > > > From: " cheryljones69 " <editing4u@e...> > > > Date: Thu Apr 8, 5:20 PM > > > To: Neurosarcoidosis > > > Subject: New to group > > > > > > Quote Link to comment Share on other sites More sharing options...
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