Finding The Answers: Mono and My Tonsils

recovering from tonsillectomyMy, my, my. It has been a crazy few months. Crazy difficult.

I haven’t felt like myself for months. Starting in May, around the time I went to Vegas, I began feeling extreme fatigue. I’ve dealt with fatigue several times before, but this was significantly worse. I though it was caused by a vitamin deficiency, so I got all of my lab work done. But everything came back unremarkable, and the rapid mono-spot test came back negative. My doctor ordered additional tests, and there was still no answer to why I was so dang tired.

I’ve struggled with depression and anxiety for years, and the summer months tend to be difficult for me. I will get into a summertime slump, and try my best to just make it through my seasonal mental health woes. This summer was difficult, but it didn’t feel like the past few years. I had a hard time staying awake through a full day at work. Despite my best attempts to focus and be productive, I felt like my brain was in a continual fog. I would get home from work, zone out, and not accomplish anything else for the day.

Stress was high because our family knew that a cross-country move was on the horizon. Taylor was transferred to Detroit in March, and it became evident that our family needed to relocate to be with him. I wore myself out trying to apply for jobs for months, and nothing was working out. I was discouraged, in addition to feeling like a blob of fatigue.

In late August, some friends invited me to try a yoga class. I’ve heard that yoga is good for stress reduction, so I figured it couldn’t hurt. I didn’t love the class, but I gave it a good effort. The next morning I woke up feeling toxic. Over the next few days, I started developing swollen glands and a one-sided sore throat. I don’t know if this was caused by the yoga, or the toxins released by the stretches, but the timing is suspect.

recovery from tonsillectomy

As the pain and swelling worsened, I decided to get checked out at urgent care. The rapid strep test was negative, but the swelling was large and abnormal. I was diagnosed with peritonsillar abscesses, which can be caused by both bacteria and viruses. I went through courses of IV antibiotics, antibiotic shots, two rounds of oral antibiotics, and a whole lot of steroids. I spent weeks in pain, in bed, and missing work. I visited with my ear, nose, and throat doctor, who said that if they abscesses didn’t resolve themselves on their own, surgery was the next step.

Over a weekend, things got worse. I was in more pain, the swelling increased, and I was very dehydrated. I went back to urgent care, had another negative strep test, and the doctor diagnosed me with infectious mononucleosis. He ordered a large battery of viral testing, told me to avoid contact sports and saliva contact with people, and urged me to get a tonsillectomy ASAP. A few days later, the results came back. I indeed had mono, even though my earlier rapid strep test was negative. I was positive for herpes simplex 1 virus and Epstein Barr virus, with an active infection for 5 months. The only way to resolve the mono was to get the tonsils removed. As soon as my ENT could get me in, I had a surgery date scheduled.

I will not lie. The tonsillectomy was horrible. I wrote a very detailed post about the nitty gritty of an adult tonsillectomy on my other blog. Two weeks of pain, discomfort, swelling, and misery. But it also was a turning point for me – I knew life was about to get much better. I started to feel a spark in me that had been absent for half a year. After months of unsuccessful job hunting, I started getting job interviews. And then I quickly was offered a job. Things were starting to fall in place for our family to move, and we’re now in the thick of the moving process.

I haven’t been writing about my weight loss surgery much because my other health concerns have been far more important lately. I feel like I’m in my groove as a bariatric patient, and there’s not a lot of new things to write about. I have gained about 15 pounds through this mono/steroids/surgery/moving debacle, and I’m looking forward to being back on a schedule once we’re in our new house. I still feel the effects of mono fatigue, so I’ve been very careful to not overdo it with exercise. I do some moderate walking, but avoid anything excessive. I have far too much stress to manage to push myself physically.

I apologize if my future posts are less frequent. I haven’t give up this blog, but I also have greater responsibilities to fill my time (like my new job). I still plan to lose more weight and document it here. My journey is far from over.

But for now, I’ve at least figured out why I’ve felt so awful for half of a year.

Surgery Timeline

Surgery timeline

Many people have asked me when I’m having surgery, what my recovery time is like, and what I have to do in the time until they cut my gut. Here’s a run-down of my next few days. If you want to get updates as things happen, join/like the Beauty and the Bypass Facebook Page. I will update when I can, and my husband will update the page for the times I can’t.

I’m starting out this morning fasting. I’ll be going to St. Mark’s Hospital radiology at 7:40 for a few tests. I will be getting an upper GI endoscopy to see if I have a hiatal hernia, and then I’ll be getting an abdominal ultrasound to see if I need to have my gallbladder removed. If I have the hiatal hernia or a diseased gallbladder, those will be taken care of at the time of my surgery.

After the radiology work, I can break my fast for a few hours. At 3pm, I can call the hospital to see what my surgery time will be for tomorrow. I’ll need to take a bowel prep drink called Citroma (yay!) and then begin a clear liquid diet. In the evening, I need to shower and wash my abdomen with a surgical prep antibacterial soap called hibiclens, which I’ll also have to use again in the morning. Beginning at midnight, I will be NPO (nothing by mouth) until I go in for surgery tomorrow.

My estimated hospital stay will be a day and a half. I’ll go into the hospital Tuesday morning, and likely be discharged Wednesday evening. I’ll be home recovering for 2-3 weeks. I’m glad that my husband will be home with me as I recover.

If you’re interested in visiting me at the hospital, send me a text, tweet, or Facebook message. I’ll let you know when I’m ready for visitors. If you don’t want to come into the hospital to visit, I’ll be anxious for visitors at home.

Unsolicited Advice

One of the most difficult things I’ve encountered in the week since I’ve been telling people that I’m having surgery is the overwhelming amount of unsolicited advice. I feel like every sentence starts with “If I were you…” or “Wait, why don’t you try ____ first?” It feels good to know that there are so many well-meaning people who want me to be healthy, but sometimes I wish people would bite their tongue.

Even though I outlined the nitty gritty details of my weight loss struggles in my post about why I’m having gastric bypass surgery, people are suggesting weight loss methods that have already been unsuccessful for me. Yes, I’ve worked with a personal trainer. Yes, I’ve tried that weight loss supplement. Yes, I understand that I’ll have to completely change the way I eat after surgery.

And then, there are all of the people who are involved in multi-level marketing companies with nutritional products. I’m aware that these shakes and supplements are top-quality and will give me great results…but I DON’T want to sign up for an MLM. For instance, I’m really interested to try the MonaVie RVL shakes, but I can’t just pick them up at a retail store. I’ve reached out to people who are involved with MonaVie, and they want me to just sign up. And then they tell me that if I start the “RVLution,” I won’t even need to have surgery. Maybe I would have been interested 2 years ago, but not now. I’m having surgery, and I’m not going to give that opportunity up after all that I’ve been through to get approved. I have had too many unsuccessful weight loss attempts, and I am confident with my decision.

And for those who are still trying to talk me out of going under the knife:

  • I’ve been to surgery classes and am well informed about the procedure that I’m about to undergo. I am fully educated on the risks and benefits.
  • I have the backing of my primary care physician, pulmonologist, endocrinologist, therapist, and other people who have been professionally involved in my health care. And now, my insurance company has determined medical necessity for surgery.
  • My husband, daughter, and other family members are supportive, and understand the risks and life changes that will have to be made. And they’re excited to see me healthy again after all my illnesses over the past few years.
  • Most of all, it’s my decision. Not yours.

The Surgery Approval Process

approved

In December 2010, after several years of deliberation, I decided conclusively that I wanted to have weight loss surgery. I had tried so many different “conservative means” of weight loss, and I was ready to do something significant. I discussed weight loss surgery with my primary care doctor, endocrinologist, gynecologist, and my pulmonology sleep specialist. All were in agreement that surgery was medically necessary to alleviate my obesity-related health conditions.

Even though I had done hours and hours of research about weight loss surgery, I wasn’t exactly sure what I needed to do get my insurance company’s approval. There’s a lot of websites that talk about weight loss surgery, and give a rundown of  requirements, but it’s plan-specific. I hopped on the Cigna website to verify my benefits, find a surgeon who was a preferred provider,  and determine the gastric bypass surgery approval requirements.

The gastric bypass insurance approval process varies from insurer to insurer, but most companies have similar guidelines. You have to get clearance from your primary doctor for surgery, gather medical records, choose a surgeon and find out what the office procedures are to begin the surgery process. Cigna has a guideline that is more strict and involved than some insurance companies, namely explicit documentation of 6 months of medically-supervised weight loss attempts.

It took a few weeks to get my medical records from other doctors, and get my primary care doctor to complete a letter of medical necessity. At that point, I called up the surgeon’s office and made an appointment for their introductory weight loss surgery class. This 4 hour class outlined the different weight loss surgery options, risks and benefits, and a Q&A session with one of the surgeons. After I class, I was given a large packet of paperwork to fill out, with a checklist of medical records I needed to acquire. About two weeks later, I’d requested all of my medical records from the last 6 years (in 4 states, no less!) and was put on the waiting list.

A few weeks later, I had my appointment to meet with Dr. Sherman Smith, the bariatric surgeon I had chosen for my procedure. We went over my health history, he gave me an examination, and he gathered the information he needed to write a letter of medical necessity for surgery. Originally, I was planning on having a sleeve gastrectomy, but after meeting with Dr Smith, he strongly recommended a roux-en-y laparoscopic gastric bypass instead.

About 2 weeks after my visit with Dr. Smith, I got a call from the office saying that my surgery packet had been sent off to Cigna. About a week later, I was so excited to see a letter in my mailbox from Cigna – until I opened it. The letter stated that medical necessity could not be established until I provided 6 MORE MONTHS of documentation of medically-supervised weight loss attempts. I provided almost a year of physician-supervised weight loss attempts, and they wanted 6 more. Jerks.

I was frustrated because I had started telling family and friends that I was preparing for surgery, I had money set aside, and was expecting to be on the operating table in about a month.

I went through a bit of a mourning period after that. I was so upset that my insurance wanted to postpone a surgery that was already “medically necessary” by every other means, except more paperwork. They questioned my 8 months of records from Weight Watchers as not sufficient, when their website specifically outlines Weight Watchers as a suitable weight loss method, when supervised by a physician. I met with Dr. Poor, my primary care doctor, who said that St. Mark’s Hospital offered a physician-assisted plan through his partner clinic, Lone Peak Family Medicine. I took the information flier, called up the registration line, and had an appointment for the clinic later in the week.

When I went in for my appointment, I was surprised to find that Dr. David Jack was the supervising physician of the program. Dr. Jack and I go back quite a while…he was the doctor who supervised me on my treatment on Phen/Fen back in 1995-1997. He also managed my care for several years after my treatment of ARDS. We went over my more recent health history, set up a very-low fat food plan, and I began on medication for weight loss.

Unfortunately, I didn’t have a significant loss of weight in the time he supervised my weight loss. I went down about 15 pounds in 6 months, which isn’t very significant when I have almost 200 pounds to lose. He agreed that weight loss surgery was a good option, wrote a letter indicating his support of surgery, and forwarded it to my primary care doctor.

In early October, I’d hit my 6 month mark. Dr. Poor wrote another letter for Cigna, again emphasizing the need to expeditiously approve my surgery. Unfortunately, the appeals process with Cigna went on for THREE FULL MONTHS. They kept sending me letters saying that they could not determine medical necessity, even though the needed paperwork had been received. Apparently, they had a really hard time matching up my original surgery packet and my updated paperwork….which were scanned into the same computer system. Yay, technology!

In early January, Kristina (who was my valiant pre-authorization ally through those 3 months) was told to resubmit the entire packet to Cigna. Within two weeks, I FINALLY had the approval for surgery! This was last Monday, and since then I’ve had my surgery date scheduled and began this blog.

I don’t know how many people go through a 13-month approval process for their insurance, especially when all clinical criteria for medical necessity is obvious. It was documentation not being exactly how the insurance authorization team wanted, then many other glitches in the system. But now my surgery is approved, and I meet with Dr Smith again for a pre-surgical appointment tomorrow. Also, my pre-surgery “crash diet” begins.

For those interested in the specific verbiage of Cigna’s 2012 weight loss surgery policy, at the time I went through the process, the criteria is as follows:

CIGNA covers bariatric surgery using a covered procedure outlined below as medically necessary when ALL of the following criteria are met:

The individual is ≥ 18 years of age or has reached full expected skeletal growth AND has evidence of BMI (Body Mass Index) ≥ 40 OR BMI 35–39.9 with at least one clinically significant obesity-related comorbidity, including but not limited to the following:

  • mechanical arthropathy in a weight-bearing joint
  • type 2 diabetes mellitus
  • poorly controlled hypertension 
  • hyperlipidemia 
  • coronary artery disease 
  • lower extremity lymphatic or venous obstruction 
  • severe obstructive sleep apnea 
  • pulmonary hypertension

Failure of medical management including evidence of active participation within the last two years in a weight-management program that is supervised either by a physician or a registered dietician for a minimum of six months without significant gaps. The weight-management program must include monthly documentation of ALL of the following components: weight, current dietary program, physical activity (e.g., exercise program)

A thorough multidisciplinary evaluation within the previous 12 months which includes the following:

  • an evaluation by a bariatric surgeon recommending surgical treatment, including a description of the proposed procedure(s) and all of the associated current CPT codes 
  • a separate medical evaluation from a physician other than the surgeon recommending surgery, that includes a medical clearance for bariatric surgery 
  • unequivocal clearance for bariatric surgery by a mental health provider 
  • a nutritional evaluation by a physician or registered dietician

2013 Update: Cigna has made three separate major changes to the verbiage of their bariatric surgery guidelines since my surgery was approved. Even if it doesn’t seem like the documentation of the 6 months of medically-supervised weight loss is such a sticky point, it is. Three other weight loss surgery patients have contacted me to say they had the same denial for medical documentation of the six months of supervised weight loss. Make sure to document EVERYTHING if you’re considering weight loss surgery, especially if you’re insured by Cigna!

Why I’m Having Gastric Bypass Surgery

With my extensive social media involvement, I have many people that I interact with who I’ve never met. I post a fair amount of pictures of myself online, and I always pick the pictures where I think I look good. I’ll tilt my head the right way, crop out my arms or belly, and avoid showing my whole body. I hide my problem areas along with my insecurities.

The truth is, I’m very large. Technically, my BMI of 51 puts me in the “super obese” category, which is one step above morbidly obese. I have a plethora of health problems including chronic obstructive pulmonary disease, severe obstructive sleep apnea, elevated blood pressure, polycystic ovaries, hormone imbalances, chronic anxiety and depression, edema and circulatory problems. My joints constantly ache, and I have difficulty exercising without injuring myself. I take pills to help with many of these problems, and I’m usually in a doctors office at least twice a month.

Now, you might be thinking “She doesn’t look THAT huge.” I get that all the time. I was blessed with good genes. I’m 5’10”, so my weight doesn’t show as blatantly on my frame as it might on other people. But as stated above, I have a lot of health problems and excess weight. When I stepped on the doctor’s scale last week, I weighed 357. It’s not the most I’ve ever weighed, but close. When I hit 300 three years ago, I could not believe I’d hit that point. But when have disclosed my weight to others, I usually get a depreciating statement like “That’s not possible….you don’t look anywhere near 300 pounds.” As much as I appreciate people telling me I don’t look my weight, the numbers on the scale do not lie. And I’m very self-conscious about it.

I’ve come to hate group photos. All I end up doing is comparing myself to the other people in the picture. Especially arms – my upper arms are 2-3 times as large as a fit woman’s arms, and no amount of toning ever seems to help. I’ve done a fair amount of weightlifting over the years, and all it’s ever done is bulk up my big arms. Or so it seems to me.

I honestly believe I have a more healthy diet than the average American. I’m a pro at the lean protein/whole grain/veggie and fruit way of life. I have been putting myself on restrictive diets to lose weight since age 11, which was when my weight problems began significantly effecting my self esteem. I’ve memorized nutritional information for most foods that I consume, including calories, fat grams, carbohydrates, and protein. Until last week, my main guilty pleasure was excessive consumption of soda and caffeine, but I’m overcoming those addictions and am on day 7 totally soda free.

As I’ve started telling people about my surgery plans, one of the first things that people ask me is “Wait, have you tried _____ diet/supplement/pill/shake?” Honestly, I’m DONE “trying” things. The short list of my weight loss attempts include Weight Watchers (8 times), South Beach diet, Atkins Diet, American Heart Association diet, calorie counting, fat gram counting, high protien diets, liquid diets,  personal training, online diets and support groups, hypnosis podcasts, Curves, Intuitive Eating, Thrive weight loss, and physician-assisted weight loss plans with prescription weight loss drugs (both phentermine and the naltrexone/bupropion combo).

Twenty years of failed weight loss attempts has significantly affected my endocrine and digestive systems, not to mention my self-esteem. I’ve spent the better part of 10 years on a therapists couch, and much of it has to do with my body image issues and addictive behaviors. I have such a skewed relationship with food. Although I do “eat emotionally,” it is not my main issue. I am a social eater. I can stick with a strict eating plan when I’m on my own, but as soon as I’m around other people, I can’t keep up.

I love the experience of indulging in food with love ones. Many of my happiest memories in life include delicious food with friends and family. It’s so easy to lose control when I’m eating with people I love, no matter what the food item is.

So much of my relationship with my husband has included food. When we only have an hour or two for a date, we almost always go out to eat. When we first got married, we ate out all the time and each gained about 35 pounds. While my husband was able to lose it through diet and exercise, my weight has crept up through the 7 years of our relationship, despite my best efforts. My weight and health have affected our relationship, and I know that it stresses my husband out to no end. Because he is away from home for half the month, it’s been hard to come up with a consistent diet/exercise routine that doesn’t stop when he comes back into town.

So, for these reasons and many more, I’m going under the knife. It took two years to come to the decision to have surgery, with the approval process taking another year. I’ll blog about the approval process for me next, but believe me, it was a tough year of paperwork, health histories and exams, appeal letters, and countless phone calls. I’ve been scheduled for laparoscopic RNY gastric bypass surgery on February 7th.