This is a story of a life changing decision, how the healthcare community has failed us, and finally redemption. I hope you learn from our mistakes and ultimately enjoy the roller coaster ride....
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As most of you are aware, my husband and I had Roux-En-Y Weight Loss Surgery in 2003 and 2002 respectively. Our surgeon was the only surgeon in town doing the procedure and our insurance at the time wouldn't cover for us to go to Nashville. We put our complete and total trust in this doctor. He has actually performed three different surgeries on me, operated on most of my family, and of course my husband. We had our usual follow-ups for the first two years that included weight, vitals, and a standard blood test focusing on B-12. The only nutritionist we ever saw was the visit required by our insurance company for preapproval. This was an in-house nutritionist at the hospital who admitted she knew nothing about Weight Loss Surgery. She read us a pamphlet distributed by the surgeon and said not to follow it but we did the best we could and got lots of help from the internet and online support groups. After the initial two years, all communications stopped except for an invite to the local Bariatric Center he created, and now has two other surgeons working with him.
In the meantime, we were seeing a Primary Care Physician who we adored. He listened to us, he spent time with us, he expressed genuine concern and did what he could to help us when we needed. Or so we thought. Blood work again was standard tests, glucose, B-12, iron, and in my case thyroid and rheumatoid. In 2004 he diagnosed me with Fibromyalgia with the standard treatments that never really worked effectively. He sent me to random local specialists over the years who would see me once and say "well, your primary is doing what I would do so go back to him." A waste of time and money.
In 2007 he sent me to a local oncologist/hematologist for an iron infusion. My ferritin levels never got above 15. The specialist he sent me to didn't understand Gastric Bypass Surgery and refused to do the infusion. Instead she prescribed 8 over the counter ferrous sulfate pills a day. The constipation and nausea made me sicker than I have ever been or ever would be. When I called him crying, his only response was to treat the constipation with Miralax and told me to follow the advice of the specialist. After 10 appointments and lots of money in co-pays, my ferritin level maxed out at 15 so she discharged me back to him.
Fast forward to 2010. Still no contact with our surgeon and our PCP is spending more time dealing with personal issues than seeing patients. Appointments are scheduled weeks in advance only to be cancelled an hour before. If we even made it to the office, the wait time was never less than 4 hours and the care was sub-par at best. After fighting with his office for over a year, in 2011 it was time for us to find a new PCP. My gynecologist of all people referred me to someone in Nashville. Thankfully our insurance now covers doctors in Nashville so I made an appointment for us to see her within 6 weeks. I needed my PCP one more time and my intent was to show him some respect and talk to him about leaving. I waited 7 hours in the waiting room to see him, 2 hours in the exam room, and that was the absolute final straw. I got what I needed and never went back.
Our new doctor is fabulous. We've been with her for two months and she didn't wait to address the pain issues and the iron deficiency. As is typical with specialists, the appointments weren't immediate but were timely enough. The first appointment that I went to last week was with a pain specialist. After some probing and making me really think about it, we were able to pin point that the pain started after having Weight Loss Surgery. Of course my husband was with me and the doctor was honest with us, he's not sure Fibromyalgia even exists. He's actually a neurologist that specializes in pain. His theory is that all pain originates from somewhere and the trick is finding where.
He also revealed something else. New studies show that those of us who had the early Roux-En-Y are severely malnourished, more so than we were originally warned. He believes that my pain and exhaustion is actually a response to a vitamin deficiency. I mentioned the chronic anemia and he said this is bigger than just anemia. He started naming what to me sounded like the periodic table of elements. Another aspect of my pain is centered in my hips and legs. Past MRI's show arthritis in my lower back and down so he is going to treat that pain. I have a nerve block scheduled for next week to see if some of the pain can be relieved and he sent a letter to my new PCP with his theories and suggested blood work. I am excited and livid at the same time. Excited because I may be able to shed the stigma that comes with Fibromyalgia, finally end the cycle of daily pain and exhaustion, and start living the life I have wasted the last 9 years. Livid because had my surgeon actually followed-up or my Primary Care Physician not become complacent in accepting the Fibromyalgia diagnosis, this could have been caught years ago.
Today I had an appointment with the Nashville office of oncology/hematology and the Iron Deficient Anemia was in full swing. I had a hard time staying awake even after a good night sleep and my breathing was labored, typical symptoms of dangerously low iron levels. After a brief interview and a look at my blood work, the doctor was pissed. I revealed that the doctor at his sister office refused to do the infusion which made him angry and the fact that I begged for an infusion for years without results made him just as livid as me. My ferritin level was 7 a few weeks ago and despite the acceptable range of 10 - 150, he's not happy with a level less than 100. While he was looking at my blood work he said "wow, you are really malnourished" and pointed out a few other test results that while within the normal range are not actually normal. He had me moved to the other side of the office immediately for a 3 hour iron infusion. I'm already feeling better and am actually unable to sleep tonight which they warned me would happen.
Then finally this afternoon my husband had an appointment with our PCP to discuss some odd symptoms he's been having. After a thorough exam and discussion, she is sending him to a specialist as well, one that will refuse to give up until she finds the cause and fix it. Even though I didn't have an appointment, she asked if I needed anything and I asked about the letter from the pain specialist and told her about the infusion. Before leaving, she had nine.. yes I said nine.. vials of blood drawn to check the periodic table we discussed the week prior. It's going to be several days before we get the results and I'll be on pins and needles until I get the call. After 9 years of misery we have finally found a group of doctors who will take us seriously and are working hard to find answers. I will come back next week to give you the results as well.
So the moral here is that this is a major life decision that you've made. Don't make the same mistake we did and become complacent in your care. If your doctor is only checking the basics or worse yet, not checking anything at all, demand a complete nutritional workup and if you can't get it, find a doctor who will. Vitamin deficiencies lead to more serious effects if left untreated and we didn't have this surgery just to fight with other problems later in life. Weight Loss Surgery is meant to give you a second chance at a normal healthy life, don't let a doctor take that away from you. Our next step is to find a nutritionist who specializes in Weight Loss Surgery so we can become the healthy active members of society we deserve to be.
Let me know your experiences, where you have been failed, and who your champions have been. By sharing we can learn from each other and enjoy this gift we have been given. Stay tuned until next week.
Much love
Angie
Showing posts with label Roux-en-Y. Show all posts
Showing posts with label Roux-en-Y. Show all posts
Thursday, September 29, 2011
Tuesday, May 31, 2011
Starting Over... Day 2
Monday was a good day. I wish all Mondays were like this one. It was Memorial Day and we had the day off. We started the morning with our daily turkey, egg, and four cheese Mexican blend scramble.
You can save calories by using Pam instead of butter. If you have a digital kitchen scale, use it for this until you can recognize an ounce of each on sight.
1 small pat unsalted butter (less than ¼” thick)
1 oz lean thin sliced deli turkey breast (I use Hillshire Farm oven baked), roughly chopped
1 oz shredded 4 cheese Mexican blend
1 large egg
Melt the butter in a small sauté pan over medium heat. Toss in the turkey breast and cook, stirring occasionally just until the edges start to turn a light golden brown, about 5 minutes. Crack the egg directly in the pan and begin stirring immediately. Stir constantly until the egg is cooked through but not dry. Remove from heat and stir in the cheese. Allow scramble to sit in the pan, off the heat, until the cheese is completely melted. Serve immediately or pack to stay warm. (I increase the eggs to 3 and the turkey to 2 oz during the week and we split it between us. We pack this every morning and eat them when we get to work.)
Nutrition:
Calories: 240
Total Fat: 16.3 g
Saturated Fat: 8.6 g
Cholesterol: 241 mg
Carbohydrates: 3.1 g
Sodium: 840 mg
Sugars: 1.4 g
Protein: 19.8 g
I know it’s a lot of fat, cholesterol, and sodium. I’m looking for a good quality reduced sodium turkey and cheese but I can only find reduced fat. We’ve been eating 2 eggs every morning for several years and our cholesterol hovers around 140. I’m ok with the nutritional information here.
After breakfast we went outside, worked in one of the flower/herb beds, mowed the yard, and grilled enough meat for a few days. This stupor that I’ve been stuck in has kept us inside the past couple of summers. It felt great to be in the sun, digging in the dirt, and working together to actually accomplish a goal. It was a really good day.
We finally grilled for the first time this season. We grilled (4) Hebrew National Jumbo Beef Franks, (2) Hamburgers made out fresh ground chuck from a local butcher, Guinness Extra Stout, and Low Sodium Worcestershire, (4) boneless, skinless chicken breasts, and (4) boneless pork loin chops, both marinated in Lowry’s Tuscan Sundried Tomato 30 minute marinade, over night of course, and both also from our local butcher. Throw in a pound of asparagus tossed with olive oil and balsamic vinegar, a head of garlic, and white onion wedges. I go into that much detail because quality has become a major factor in our food choices. One of the early post op habits that we continue today is chewing each bite until it’s mush. You become very aware of and develop an appreciation for texture. If food has random crunchy or rubbery bits, you know like bone, cartilage, silver skin, fibrous tissue, egg shells, unidentifiable debris, we notice it immediately and it completely ruins the meal. After trying multiple brands we found that higher quality, fresher foods have little if any grit to destroy a beautiful dish. I admit it is more expensive but we don’t throw away near as much food as we did on lesser quality products. Watch for sales, coupons, and The Choppin Block, our local butcher who only sells All Natural meats in Choice grade or higher, runs specials on Tuesdays. The final price ends up being close to that of cheaper quality meats at the grocery.
(Disclaimer: I notice I’m using “we” a lot when this blog is supposed to be about me. My husband is my best friend. And even though I am the only one experiencing excessive weight gain, our surgeries were only 14 months apart and we still share every aspect of our lives, including this adventure.)
We snacked on hot dogs (1 for each of us) while the other meat cooked and we continued to clean out the flower/herb bed. Dinner was a burger, 1/2 cup asparagus, a few cloves of garlic, and a TBSP of roasted onions. Throw in a couple of South Beach Meal Replacement Bars throughout the day and a handful of berries and I was 83 calories over where WebMD wants me to be. That’s when the day went downhill.
A few weeks ago we discovered mini cupcakes made with Pillsbury Sugar Free Yellow Cake Mix. My darling husband has been asking me for Lemon Poppy Seed Muffins for months so I made them tonight. It was really simple; just add a small packet of Sugar Free Lemon Instant Pudding and 1/4 cup poppy seeds to the cake mix before adding the ingredients on the box. Even though it’s sugar free, each mini muffin is 62.5 calories. Before I was done, I had popped 3 in my mouth, along with a handful of blueberries and blackberries tossed with Splenda and Sumner Crest Tennessee Blackberry wine. I overestimated the amount of berries to account for the tablespoon of wine but WebMD now has my calories for the day at 1625, 324 calories above their goal of 1301 and a whopping 425 calories above my personal goal of 1200. That’s 128 calories more than I ate yesterday. The goal was to reduce my calories while maintaining the protein, not the other way around. I’m only 2 days into this but that 1200 calories is being elusive.
So here are my stats for today:
Open RNY Gastric Bypass: 10/22/2002
Highest Weight: 356
Weight at Surgery: 306
Lowest Weight: 156
Highest Recorded Weight Gain: 238
Weight on 05/29/2011: 224
Weight on 05/30/2011: 221.8
Weight on 05/31/2011: 221.4 (Total loss since 05/29/11 - 2.6 lbs)
WebMD Personal Actual
Calories: 1301 1200 1625 (Are you kidding me?)
Protein: 46 grams 100 grams 95.2 grams (Less than Sunday)
Total Carbs: 130 grams 50 grams 111.3 grams (A little less than Sunday)
Sugars: 25 grams 20 grams 27 grams (Almost the same as Sunday)
So with less protein and less carbs, where are the calories coming from? I still lost .4 lb which is good for one day but it also tells me that 1625 is too high. The Hebrew National Beef Frank is 275 calories and the hamburger is 345 calories. Those two items also account for 43 grams of protein. The South Beach
So what have I learned so far after day 2?
- Protein = calories. If I’m going to watch my calories, I need to find alternative, lower calorie sources of protein.
- I now understand what the disclaimer “not a reduced calorie food” really means.
- Making a treat for the husband is not always the best idea
- Be conscious of the food on my plate, concentrate on what I’m eating, and chew gum while cooking. Grazing is always a bad idea.
I’m really getting excited about what the week has in store. “Information is the mortar that builds and destroys empires” (Tobsha Learner, The Witch of Cologne
Until tomorrow...
Angie
Sunday, August 30, 2009
What exactly is WLS and Roux en Y and what does it have to do with this blog?
For those of you who are unfamiliar with this, WLS is the common abbreviation for Weight Loss Surgery and Roux en Y Gastric Bypass is the type of Weight Loss Surgery my husband and I had. I had my surgery in October 2002 and he had his in December 2003. At the time of surgery, I was 180 lbs overweight and my husband was 150 lbs overweight. The average adult stomach will hold an average of 1 quart of food, or 32 oz. The surgeon reduced our stomachs to only hold a volume of 1 oz. This new stomach is referred to as a gastric pouch or "pouch". The surgeon also performed a Roux-en-Y gastrojejunostomy. This procedure removes a portion of the intestine and the duodenum, preventing absorption of fat and sugar, then the new pouch is attached to the small intestine. So not only does the volume of food we are able to eat decrease to a minimum, but there is also an issue with malabsorption. The diet immediately after surgery consists of only liquids. The solidity and types of foods allowed gradually evolves over the first 6-8 weeks.
Having this procedure has changed the way we choose which foods to eat. Because of the malabsorption, our diets should be high in protein, low in simple carbohydrates, low in fat, and minimal sugar. Too many carbohydrates, fats, and/or sugars at once causing "dumping syndrome" where our bodies essentially reject the food and we are left nauseated, breaking out in sweats until the offending food moves through the intestines. It's not fun to go through and takes about an hour before we are feeling normal again. The size of the pouch dictates that we need as many nutrients as we can get in as little food as possible. The size of the pouch causes pain when the wrong foods are eaten as well. Carbonated beverages, rice, pasta, breads (anything that expands when wet), medications, too much sugar, can all be extremely painful and if the food bites are too big, it can actually get stuck in the stomach, preventing other foods or beverages from being consumed.
Don't get me wrong, even with these limitations, I would do again today. We both lost approximately 150 lbs in the first year after surgery. I no longer have to take medications to regulate my blood sugar and his blood pressure is normal for the first time in a decade. Unfortunately, our bodies are very resilient and over the past 6-7 years, our pouches have expanded to 8 oz. While that's a far cry from 32 oz, it is enough that when combined with other factors, it has caused us to gain back 50% of what we lost. This is normal for most RNY patients and is still considered a successful procedure.
So what have we discovered in this process? We feel better when we are eating lean, good quality meats, fresh fruits and vegetable, and drinking lots of water. We read labels now before we buy a new product. Sometimes we have to take another look at the nutritional labels on products we've always used. We've become amazed at how many additives are in processed foods, how much sugar is in the most savory products, and fats that really do not need to be there. We buy All Natural and Organic as much as we can afford and have learned some fabulous ways to prepare our meals. But this isn't just for WLS patients.. everyone.. whether you are obese, overweight, needing to add an exercise program, or physically fit and running marathons, the recipes and tips that will be covered by this blog will fit your lifestyle.
For more information on Weight Loss Surgery and Roux en Y, please visit these and other sites available online. The RNY is not the only Weight Loss Surgery option available and information on those procedures is available as well.
Thank you
Angie
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