You've Had WLS, Now Get Tested... Demand It!

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

Thirtysomething is Almost Over

I haven't been here in awhile. I blame the mild Adult ADD but I felt the need to come back today. I'm going to go off topic for a minute but knowing me I'll find my way back to food or WLS somehow. Today (or rather yesterday since it's after midnight but hey, I'm still up) I turned 39. Let me start by saying I despise my birthdays. Always have since I was a kid. I'm sure a psychologist would love to pick it apart but I honestly don't know why. Some years are better than others but this one was especially hard. I've been horribly emotional all week and this morning was disastrous. I woke up at 1:00 am to find that my adorably evil cat decided to play with the flowers our daughter brought me and spilled the water on my laptop and phone. AHHH Panic ensued. The laptop seems to be okay but the phone was sizzling. It was on it's last leg anyway so I'm not even trying to revive it again. That took a couple of hours to clean up so of course I overslept. Work was the normal drama but I was anxious to just come back home.

Coming home never felt so right. My wonderful husband worked hard all day to make sure I was having a good day. He even raced home to get to the cupcake shop to get me a birthday cupcake (it's a waste of money and carb grams for two WLS post-ops to get a big cake - AND WE'RE BACK ON TARGET) only to find they had sold out for the day and were closed. So we've been sitting here tonight, listening to good music, enjoying each other's company, and talking about life.

A few days ago I received a Facebook birthday wish from an old high school friend. To say we were friends is probably stretching it a little bit but it's the best description of our relationship I have. We chatted off and on most of the day and I realized something that should have hit me years ago - I'm not the same person I was 10 years ago, much less way back then. I don't even remember who that 15 year old girl was but I can say the decisions she made had a huge impact on my life. I am stronger, more confident and assertive, more comfortable in my own skin than I remember her being. That 15 year old kid and I do have a few things in common. My best friend from then is still my best friend now. My friends have always been more like family than my real family and they still are. And when I love someone, I love them with everything I have. She did too. So maybe I remember more about her that I first thought. I made fun of my husband when he turned 39 that it was his last thirysomething year. It's not so funny now. I am thankful and blessed that this gentleman took the time to wish me a Happy Birthday because I honestly don't know if I would have spent the last couple of days processing this.

So what is the significance of this epiphany? Well first of all, it's the right time. Since I'm now in my final thirtysomething year, I'm not going to let it go to waste like I have the past several years. There are things I want to do with my life and I don't know if I can get them all accomplished before I get to play with 40 but I'm going to do as many as possible. That scared, confused girl is becoming distant memory and I really like that feeling. I was an obese child that grew up to be an obese teenager and adult, hence the need for gastric bypass surgery. Being an obese teenager is hard. Thankfully I had friends who loved me anyway and I am still friends with most of them now. What I find interesting is that I am the same size now that I was then but it's definitely not the same. I'm sure many, many years of therapy helped with that. I could go on a rant about teenage obesity but I'll save that for another midnight post.

One of the goals I want to achieve in the next year is to get back down to or close to my goal weight. I honestly don't think I could handle it the first time around. If you've had any of the weight loss surgeries, you should have been warned about the psychological effects of this decision. People treat you differently when you are thin than when you are obese, whether they realize it or not. That's hard to comprehend and even harder to respond to. I've learned a lot about myself and about people in the 6 years I've spent gaining some of the weight back. I'm ready to try again and now's the time to do it. This is a "if I knew then what I know now" kind of moment and I have the rare opportunity for a do-over.

39. Wow. I'm good at setting goals for myself, not so good at meeting them. Is 39 going to be my year? I'm going to do everything I can to make it sure that it's successful. Thank you to my new found friend for inspiring me and thank you to my husband for turning this birthday into the best birthday yet. I can't guarantee I'll share my journey but I will try if you'll stick around with me.

Talk to you again soon
Angie