PedalSteelGirl
What Else Can Go Wrong?
Mar 02, 2011
Things were always tedious for me in the eating category. I followed each and every instruction to a "T" -- and one day I would eat a meal and do just fine, and the next day I would make the identical meal and get sick as a dog. I swear I did everything I was told to do, the vitamins, I didn't drink before a meal or too soon after a meal...I even set a timer; I ended up consulting nutritionists from Sibley Hospital and Johns' Hopkins Hospital both of whom took notes from me and said I was doing the right thing, keep going. Problem was I was losing weight too fast and either had vomiting or diarrhea most of the time. My Primary Care Physician was the first one to diagnose my problem after giving me a blood glucose meter. I suspected diabetes because it ran in my family but my doctor said no. He gave me an article from the New England Journal of Medicine regarding a condition called "Nesidioblastosis." It was about abnormal islet cell tumors in the pancreas that (when you eat) become active and create too much insulin resulting in what doctors think is dumping syndrome but in my case it was severe hypoglycemia with blood sugars going as low as 17. Normal is 80-120, the lowest acceptable is 65. A blood sugar of 17 is not good. I had such repeated instances of this that I lost the "symptoms" and was actually still able to walk and talk when I should have been unconscious. And unconscious I did become, on many many occasions. I've been in a coma. I've spent 2 months in an Intensive Care Unit. I've been transferred to Georgetown University Hospital in D.C., and operated on by the Transplant Team - and 2/3rds of my pancreas has been removed and my spleen. This Nesidioblastosis syndrome is as a direct result of my having had RNY Gastric Bypass Surgery in 2003. It didn't start to rear it's ugly head until 2005, but by that time I was underweight. I have been on PICC lines and fed by TPN, I have been taken from my house unconscious and put into an ambulance - transported to a hospital ER - and admitted to ICU - and not even known it no less than 20 times. It is my understanding that I am one of five (5) cases in the State of Maryland and about 48 across the United States and when I last spoke with my Endocrinologist at Georgetown the numbers are popping up all the time. So when you go to the seminar - if you're a pre-op, listen up when they talk about complications. Surgery to have most of my pancreas and spleen removed was HORRENDOUS. It was 4 times the incision my RNY was plus my ribs were broken on my left side and I'm still in pain from that. For a while after the surgery my blood sugars ran high and the doctors said that was ok, better too high than too low...and it's been two years since that hellacious surgery, but I'm in trouble again and registering blood sugars as low as 30; and the doctors want to go back and take the rest of my pancreas out. I have to take shots four times a day and check my blood sugar eight (8) times a day because I am immune to the symptoms of low blood sugar -- most people will start to shake and sweat, but I don't feel a thing, until I become unconscious. I have passed out and broken my cheek bone and teeth and my face is now forever marred unless I can come up with the money for plastic painful surgery. If I don't pay attention in one month I lost 20 lbs. Then here comes home health with a PICC line and the TPN. Enough for now, I'll talk to y'all later, but please please please, ask your doctor about this BEFORE it's too late because once it's done, it's done. BTW, I haven't posted (except once in 2005) about this disease, but I spoke with someone from my surgeon's office and they actually encouraged me to tell my story, so...here it is. I've heard of others catching flack for being a "downer" and discouraging people that they ended up pulling out of the Forum, and I hope that doesn't happen to me and that everyone just keeps an open mind that there is a reason that other procedures are being offered other than RNY.Yours always,
Jo Ann
0 Comments
About Me
Silver Spring, MD
Location
22.3
BMI
Surgery
11/12/2003
Surgery Date
Oct 23, 2002
Member Since
Before & After
rollover to see after photo
Barely making it through life...
Over 304lbs
Enjoying life to the fullest and more in love with husband every day.
126lbs
