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....
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.