Deanna Maidwell

I'm not certain how to post the different surgeons I've had...  I've had several since this began...  
When it started, back in 2002, I went to a seminar at Winona Hospital in Indianapolis, Indiana.  I was approved with the first letter, so on May 21st, 2002, I weighed 358 lbs, wore a size 26, had an enlarged heart, was on a c-pap and was told at that time that I had Type 2 diabetes and had acid-induced asthma.  I would wake up in the middle of the night with acid coming up through my nose and had multiple ER visits before I was given a prescription for a GI cocktail at home...  I went into the hospital the day before my surgery and was prepped for it by following a soft diet and was cut from my sternum to my belly button (it is not a pretty scar)...  I remember wanting to go to the support group at the hospital and being in so much pain, I could barely walk...  and then one of the doctors coming in and uncorking my drainage tube and I instantly felt better...  It was Memorial Day weekend and there weren't many doctors there that week...  I remember the gas pain being really severe and walking and walking and it not helping...
In July, I ended up going and having to have my esophagous dilated because my foods kept getting stuck... I remember sitting in the bathroom dumping for what seemed like hours...  I was sick all the time.  I also remember thinking I had some really weird reactions...
 In August, I drove myself to Prompt Care and sat in the waiting room for hours and when they got to me, my blood sugar was 38.  They asked how I got there and I replied, "I drove myself, I live right around the corner..."  That was first bag of glucose and saline...  After that I started recognizing that I could not tolerate certain foods...  I then met a guy through a theater I worked with who owned a health foods' store who said he had a lot of people who would come in and they'd have food allergies and it would make them go hypoglycemic...  I started eliminating foods and drinks...  I could not drink anything with concentrated sugars, including juice, red wine, anything with sugar...  I couldn't eat red twists, hard candies with concentrated sugar- anything that would spike me would send me back down just as fast...  I actually got to participate in a study at my endocrinologist's office, they were testing lows on meters and you got paid fifty dollars if your sugar was below 60.  I told them I could do that for them...  they had some hard candies and some hershey's candy up front and they watched as my sugar dropped and they kept asking if I was okay and I explained that I had been getting fifties for a long time before I actually got into the endocrinologist...  the colorful candies make my sugar spike and drop while hershey's would make it spike a little bit...  for some reason, coke and pepsi are the same...  pepsi makes it spike and drop, while coke will make it spike, but not drop like pepsi does...  it has to be the syrup...  However, currently, today, I can't drink either...
In October, 2002, I again went and had to have my esophagous dilated...  This time, I woke up with everyone freaking out because my heartrate had dropped to 32 bpm.  Today, the doctors don't get that worked up about my heartrate dropping, my normal is 46 bpm and we've discussed my getting a pacemaker, but I want to try other options first...  
By November, 2002, I weighed 189 lbs., I began teaching acting classes and producing shows again and was able to sleep at night...  I was scared to use the cpap machine after surgery because it felt like it was blowing my abdomen open, so I wasn't using it any longer...  I was able to breathe by this time so it didn't really matter...  I started exercising again and felt really great...
In January, 2004, I was sworn into the State Guard here and became an acting 2LT.  I worked two part-time jobs, volunteered in the state guard and taught acting classes with a local community theater.  In March, 2004, I had a miscarriage and my hormones were messed up...  At first they believed I was having an ectopic pregnancy, but, for some reason (maybe due to the rny), it took longer for my hormones to drop.
In July, 2004, I was hospitalized and told that I may have Lupus (I had been told in 1999 that I needed to watch for Lupus because my SED rate had been high and I tested positive for ANA which sometimes doesn't turn out to be Lupus) and I received my first blood transfusion and my first iron infusion.  In late August I was told that I was pregnant and was also told that I had antiphospholipid syndrome which may have explained my previous six miscarriages, I had one daughter who was 12 at that time.  My doctor put me on blood thinners and I ended up getting iron infusions every month of that pregnancy and ended up being diagnosed with pregnancy-related diabetes (my Type 2 diabetes had disappeared with the exercise and weight management).  I ended up taking blood thinners and insulin and ended up being scheduled for an induced labor so they could manage the labor.  
I was scheduled to start taking pitocin for 6am.  I was told to go eat a big breakfast so I wouldn't go hypoglycemic (I had had multiple issues with being hyper and hypoglycemic without the insulin)...  During the labor my epidural never worked...  My son's heartbeat and my heartbeat dropped, he had a fetal monitor placed and my pain grew more intense...  The anesthesiologist came to replace my epidural about 1130pm to see if he could get it to work and our heartrates dropped again and the doctors came in about 1am and said I was going to surgery.  I was fortunate enough for them to wheel me past my son as I woke up, so I woke up seeing a beautiful and large red-headed boy hooked up to wires...  He had to stay in the NICU for several hours at Riley Hospital for Children because he was hypoglycemic.  I was able to breastfeed him and be a mommy to him...  I have no idea which doctor actually delivered him and was told several doctors from IU had been in the room with us as my doctor had not been with us during delivery.
About three weeks after my c-section I still had problems walking and they kept telling me it was due to the c-section.  I told my primary care doctor about it and he listened and did a MRI and it showed I had ruptured two discs in my back, was sent immediately to an orthopedic doctor who immediately sent me to a neurosurgeon who explained I would have to have the discs replaced.  I put off the surgery as long as I could and was hospitalized in September with back compression and ended up having to have the fusion November 5, 2005.
After that I had started taking EMS classes to get my EMT certification and found out I was pregnant with my beautiful red-headed daughter.  This time, I knew about taking the additional vitamins, the additional B12 shots (B12 makes red blood vessels), I was prepared for everything for this pregnancy.  I again took the blood thinners and did the iron infusions and was able to be awake for this labor.   However, with this pregnancy, I again started having high and low blood sugars.  I ended up on insulin, but I also ended up eating every two hours...  However, due to the spinal fusion, I could not have a baby with regular labor and had to be scheduled for a c-section.  I was awake for all of her birth...  After this pregnancy, I kept having issues with going hypoglycemic without being on insulin.
Then, in June of 2009, I found out I was pregnant again with my youngest son, but also had an abnormal pap with the first pregnancy exam.  It was high grade dysplasia and was asked if I wanted to abort the pregnancy or if I wanted to wait it out and hope it was pregnancy-related...  I decided to have him and wait to have surgery until after I delivered...  In March, 2010, I had a beautiful baby boy, I was unable to be awake for his delivery, however, because the doctors could not get my spinal placed...  I had developed a lot of arthritis underneath where my fusion had been and between that and the metal, they couldn't get the catheter in my spinal canal.  I ended up being knocked out for the c-section and had chosen the election of having my tubes tied before the procedure and when I woke up was in more pain that I have ever experienced.  I just remember my mom trying to take my picture with my new baby and I just wanted to be alone because I hurt...  About six weeks after that procedure, I had a cone biopsy and ended up having a hysteroscopy because I had an infection because I hadn't been cleaned up inside enough...  I was told that it was level 3 dysplasia and was just about to turn into cancer and I was lucky that they had caught it in time because it had not been pregnancy-related...
After that surgery, I kept having multiple issues with hypoglycemia and was hospitalized several times with problems until one of my endocrinologists suspected I had an insulinoma.  Insulinomas are rare, but they tend to happen in the general population, but they had also had started to be seen in people who had had gastric bypass surgeries...  I was placed in the hospital for 3 days for a 3 day fast...  At that time, they said no liquids or foods.  They checked my sugar every hour until my sugar dropped below 60 and then checked to see if I still produced insulin and I did which was abnormal.  I then was referred to a Dr. Meacham who specialized in telling the difference between a true insulinoma and ones related to weight loss surgery.  I had several more tests done and found out I had a true insulinoma and that was why I couldn't keep my sugar up.  I had had instances when I was working out where I would get really sweaty and clammy and I thought that was due to my working out...  I was about dumb, I had been going hypoglycemic.  I would get really confused at times...  Sometimes, I could mow the grass for like ten or fifteen minutes and would have to get a PBJ sandwich...  The standard rule is carbs followed by protein...  I still have to follow that...  
Anyhow, March 5, 2005, I had pancreatic surgery to remove  the insulinoma/tumor.  I was in the hospital for a week, I went home and taped my prescriptions to the cabinet door saying I'll go get them tomorrow because I was exhausted when I got home and couldn't drive anyhow...  A nurse was supposed to come to the house, but they ended up calling no one would be there because of the snow. I made it through it...  Three weeks later, I had lost the prescriptions that were still taped to my cabinet door in the kitchen, that were in front of my face every time I went to the kitchen, I got really constipated and ended up drinking epsom salts which a friend's mom who was a nurse had suggested...  I don't know how I got through that, but I did and it was not good...  Then about a week later, I screwed up because I got antsy and decided I needed to get up off my butt and build a retaining wall...  JFYI, if you have surgery, you can get up, but don't lift stuff...  No one had said anything about lifting, (for some reason I was under the impression that if it didn't hurt I could do it, another JFYI, just because it doesn't hurt when you did it doesn't mean it won't hurt later...) I called the nurse and she asked me what I was doing and I said I was sitting there looking at my fence and worrying the kids would fall under it and decided to fix it, and that's when she said, "didn't anyone mention to you that you could get a hernia?"...  that was pretty dumb on my part, probably the dumbest thing I've done...
So, a year later, I'm having problems swallowing...  I mention it to the doctors and am told that there is a fistula...  I'm having multiple procedures for my neck and back...  I have spinal stenosis, so it's a delicate management of what I'm allowed to do now...  Anyway, back to the fistula...  
I go into the hospital and I am lucky enough to get the head of bariatrics at IU, Dr. M, who is now a director of a hospital in Oregon...  I have been diagnosed with a fistula in the ER and he wanted to see it for himself, so he does an endoscopy in October, 2014 and says he can fix it through my esophagous via endoscopy...  In November, 2014, the day before Thanksgiving, (he was nice enough to come in on Thanksgiving so I could be discharged and go home with my kids, btw), he goes in and glues the fistula shut...  He explained to me that if it reopened I would have to have everything opened up to fix it and that we could do both my pancreatic and my fistula surgery at the same time if that is the case because we had also found out not all of my insulinoma had been removed in the surgery...  I went about my business thinking everything was fine and started having pain again in January, 2014...  They scheduled me with another endoscopy by a doctor who specialized in endoscopic ultrasounds, hoping he would be able to see the tumor and he found that my fistula was again open...  He then did esophageal surgery on me again in April , 2015 to fix the fistula...  I had a lot of swallowing issues in May of 2015 and the pain became really severe.  In June, 2015, I ended up in a different hospital closer to my home and had an endoscopy done and was told and shown in pics that the clips and staples used to hold my fistula shut in the last procedure were sticking up in my esophagous...  He said he had to remove them and was going to have to go in to repair the fistula via my abdomen at a later time.  All I know is when I woke up after this endoscopy, my pain wasn't nearly as bad...   
I was then told my surgery would end up being like a revision of my roux-en-y.  My diet would be the same as if I had had a new gastric bypass.  When I woke up, I had a feeding tube and a drainage tube...  I went home with both...  I had gained back some weight and weighed 230 lbs by this time which was common with the fistula and the insulinoma (you eat to keep your sugar up...).  My doctor said he would do everything he could to do my surgery lap-wise...  On September 24th, 2015, I went into the hospital with my mom and my youngest daughter with me...  I woke up with another G-tube and a J-tube again and was told that the surgery had taken longer, there were a lot of adhesions, so I ended up with a very small stomach and a one ounce pouch...  This last surgery was probably the hardest...  He rerouted everything again and I had a lot more difficulties with this surgery...  I thought I had pulled my tube out because I couldn't get anything to go in it and we found out there wasn't any place for it to go...  The ER near my home thought I had pulled it out too because they couldn't get any dye in my catheter, the next day I had to drive to where my surgeon was so they could do an upper GI and it was fine, just no volume for anything to go in...
 JFYI, some hospitals don't understand this type of surgery, any of these types of surgery, so if you're having problems, go where you know beforehand they know what they're talking about...  they'll call you crazy, they'll make up excuses, they will put you off, but if you're having a vitamin deficiency and it's a really bad one like B12 or Zinc, go wherever you need to go and don't put it off...  I actually had one where my Zinc was too high and it caused another vitamin to be low because it was high...   Just be careful where you go after these surgeries...  
Since I had the last surgery, I found out from a anesthesiologist at the hospital where I had my surgery that being cut in the abdomen multiple times can cause back pain and there are nerves that go from the front to your back...  That was from when my feeding tube became infected and I couldn't take it out until they knew I would be able to take something in...  it would tug, pull, it was not comfortable...  I was fortunate enough to have a really good PA at my surgeon's office who knows all the different little secrets...  she even turned me onto Rocket Refuel drinks...  they have some with high carbs, but they have some that are chocolate and vanilla that have like ten carbs and 25 g protein- they don't make me dump...  it seemed like every other drink I had had since my rny in 2002 had made me dump...  I also have learned that if I don't take in enough food, I stop losing weight... I won't gain, but I won't lose...
Currently, I am having some issues with pain when I breathe, I was told at one of my endoscopies last year that I don't produce enough acid to worry about anything anymore so I shouldn't have to take any acid stopping meds (protonics/nexium, etc.) and that I should be able to take my arthritis meds...  However, when I started doing that last April, I started experiencing a lot of pain in my throat, esoph., etc.  I then had another upper GI and found out I have motility issues, there is a spot where my food doesn't pass if I don't drink liquids- exactly opposite of what they tell you to do for a bariatric diet, right?  They say you have malabsorption issues if you drink with food...  Well, I'm also having a major problem with constipation now and I can't take anything because I'm constantly going hypoglycemic...  My labs say I'm well-hydrated, I have been drinking like crazy, I have to drink stuff with a little sugar to keep my sugar up about 70...  I can't eat anything bulky- last week I ate and it felt like it just kept piling one thing on top of another until I threw up- I had no nausea then...  This morning I woke up with nausea and spinning, but I was at the ER yesterday trying to get a handle on this...  that was when I found out how much it was hurting me to breathe...  I asked for a GI cocktail...  It hurt when it went down, then better, then about ten minutes into it I had a muscle cramp in my chest near where my stomach was- I can usually tell the difference between my heart and my stomach things now, at least I hope I can...  Anyhow, the cramp lasted about five minutes... after that I could take a deep breath, the first time it hadn't hurt to breathe in I don't know how long...  I could feel the air going down and it felt really good...  however, when I tried to eat some pudding later, that hurt... the doctor said I'd have to get in with the other doctors, but not to forego food and keeping my sugar up for the pain it was causing...  He gave me a script for some lidocaine for my throat...  it isn't working so much yet...  my motility specialist now has me scheduled for another ph test...  I'm glad those have changed over the last fifteen years...  I remember my nose bleeding and not having anyone to drive me home fifteen years ago...  They actually numb your nose, etc. this time and you don't have to wear it for 24 hours which really sucked... 
Sometimes, I get on these kicks where I'm finished going to doctors, but then when I can't take it anymore (when I can't deal with the pain on my own...  I don't like to take pain meds and they just cause other problems..., but there are times when the breathing and pain gets enough...  I felt like ten billion times better after they numbed my esophagous yesterday...  I was exhausted, because I hadn't slept because I've been in pain so I actually slept most of the night, I only got up twice...) I have to go back...  I just get sick of going to the doctor.  I'm tired of hospitals, being cut open, having weird things go on with my body...  I've already had cataract surgery and I'm 46...  Anyway, going to the doctor to make something better, I don't mind...  It's the going to the doctor and them not fixing anything or helping you figure out a way to deal with it because I'm to the point now of just wanting to learn how to self maintain so there are no more doctors...  I kind of would just like to live the rest of my life, see my kids grow up and do it without pain...  Yeah, that's another thing...  do your best to not switch doctors, no matter how scared you get, what someone tells you, etc.  When I moved, I thought I'd get doctors closer to where I lived, there was a hospital five minutes away...  just because a hospital is closer doesn't mean it's a good thing...  Stay with people who know your history...  When I tried to switch doctors to where I live, there had just been an expunging of doctors who handed out pain prescriptions here so no one, even still, will give out pain meds, you have to absolutely go to a pain clinic for that here...  not good for someone who has Lupus or surgery for that matter...   I'm still having issues with getting my Lupus taken care of because I had to switch healthcare programs...  I have had multiple instances where hospitals don't automatically check my sugar when I come into the ER...  With my history, that needs to be the first thing done when anything is bothering me...
Also, after having any surgery, make sure you learn how to maintain after the surgery in case your insurance changes...  I just went through a bounce back and forth thing where I didn't know who to call or who would see me because if one doctor did my surgery, even though my insurance was changed, my old surgeon wouldn't see me thing...
Anyhow, this is a short summary of my surgical history since my first roux-en-y...  I'm hoping in my heart to never have surgery again...  My pathology report shows that my insulinoma is still there and I've had massive problems the last two weeks with hypoglycemia and my motility issues as well as my statsis in my esophagous are getting worse...  I don't know what I did exactly...  I don't know if the fact that I was a health food fanatic has helped me stay here this long or if God has another purpose for me or what is going on, but I'm still here so something must be up...  the surgery for me was never just about losing weight, it was about getting a life that I had never had...  I would've never done tae kwon do five hours a night before that surgery, I wouldn't have gotten into the guard (I volunteered for a lot of things before the surgery, but not like that...), God knows I wouldn't have my youngest kids...  Like I said, I don't know what my purpose is...  Maybe it's letting someone know that they don't have to be afraid, if everything goes normal for you, you'll get your life back and it's only hard for a little bit- not forever...  It WILL BE OKAY...  don't let anyone bring you down and don't get discouraged...  God put us here for a reason...  You aren't a waste because anything that came from God is a gift....  YOU ARE A GIFT and you are never alone because HIS spirit is always with you.  Every time you feel like you're in a dark place, you're afraid of the unknown, remember HE is there with you.  All the surgeries that I've went into alone because my kids were too young to be there...  I would get worked up and remember, if I don't wake up then my purpose was served, if I do then HE still has something planned for me...  I didn't mean to turn this into a sermon, but if it weren't for God making his presence known to me and giving me the secret gifts that I didn't deserve in my life, then I most likely would still doubt HIS presence...  I used to question why others didn't worry more about what the truth was...  where we came from, our existence on this earth...  Anyway, I don't plan on going anywhere.  Whatever doesn't kill you makes you stronger.  170 lbs