Finding success with BiLevel and getting my life back after apnea diagnosis in 1989 was a miracle. The renewed energy gave me hope and encouragement to exercise my way back to better overall health through weight loss. My weight fluctuated like the proverbial yo-yo over the next several years. BiLevel was great but it did not cause me to lose weight as I had hoped.
I struggled with obesity most of my adult life. Born in 1954, women of my generation will remember the “diet of the month” mentality. We were on diets all the time, and most were goofy diets- what were we thinking? I remember the cabbage soup diet, the grapefruit diet; my shelves are full of diet books. I laugh now, but back then this was serious business! Oh, the havoc these silly diets reeked on our metabolism! I was a member of Weight Watchers, TOPS, I went through the Opti-Fast program two times. I joined gyms and bought exercise equipment. I must have lost and gained thousands of pounds over my lifetime.
My father had a stroke at age 57. I believe his undiagnosed and untreated sleep apnea was a major contributor. My father is also a Type 2 diabetic on insulin. I have my father's genes. In the late 90's I finally received the official diagnosis of Type 2 diabetes. I dreaded it, but knew in my heart it was coming.
Diabetes is a strange disease. I have heard it called the “silent killer”. I never felt any signs or symptoms and never would have known I was diabetic if not for the family history and lab work. Unable to control my diabetes through diet alone, I tried several medication regimes. After a few years, my physician began preparing me for insulin injections. I cried. Over time, diabetes caused me to develop peripheral neuropathy (permanent nerve damage) which left both feet numb from toe to ankle. My metabolism was so messed up that even a 1,000 per day caloric intake would not cough up the loss of one single pound. I felt so defeated. I feared the needle. Now what?
Gastric bypass was something I considered years ago, but it frightened me. I had heard the stories of death and laundry list of ugly complications. Surely I could lose weight on my own…apparently not. I decided to take another look at surgery. Gastric bypass had come a long way and now multiple procedural options were being offered. After attending educational bariatric seminars; spending hours on the internet reading patient comments, and researching physicians, I decided to say yes to the open Roux- en-Y procedure. At the time, this was the most common bariatric procedure. First, a small stomach pouch is created with staples. This restricts food intake. Then they attach a Y-shaped section of the small intestine to the pouch to allow food to bypass the first and second segments of the small intestine. This reduces your body's ability to absorb nutrients and calories. The physician I chose had done this procedure successfully several hundred times. I had confidence in him, he had confidence in me.
Once I made this bold decision, I was eager to move forward. I certainly met all qualifications and quickly breezed through the insurance required nutritional education and psychological counseling. Six months later, I found myself staring down at the surgery date. I was having the procedure to rid my diabetic condition. Dare I also hope that my apnea might be cured? No, I dare not hope for too much.
A few days after Christmas in 2003, in my 49 th year, surgery day was here. I weighed 264 pounds. BiLevel at 20-11 was keeping me alert; I slept well and felt great. As I was taken in to the operating room my prayers asked that I safely come through the surgery and the diabetes be cured with weight loss. This was truly my focus and if my apnea was affected positively, that would be icing on the cake. After all, I already received one miracle, BiLevel saved my life. After 14 years I had fully accepted and was prepared to spend the rest of my life on this machine that guaranteed me quality restorative sleep with optimal oxygen levels.
Roux- en-Y was successful and I was home in three days. The pain was manageable and within a week I was eating a soft diet. I carefully followed all post operative instructions and suffered none of the side effects or complications that I was warned about. Recovery was much easier than imagined. The pounds flew off and eight weeks after surgery my blood sugar was within normal limits. Too early to consider me “cured”, I continued the recovery process, kept losing weight and after sixteen weeks my doctor smiled and said, “congratulations, you are no longer a diabetic.” My heart jumped for joy. I felt so blessed to have my prayers answered again. At nine months post surgery, I had lost about 90 pounds and lab work revealed normal blood sugar, a significant lowering of cholesterol and normal triglycerides. Over the next year the weight came off much slower and eventually I lost a total of 110 pounds.
During the first year of weight loss, I traded in my trusted Respironics BiPap Pro with BiFlex for an AutoPap. I did not expect an apnea cure, but I felt sure my inhalation pressure would drop as drastically as the weight. I was wrong. I waited to try AutoPap until I lost the first 30 pounds. Accustomed to BiLevel for 14 years, I found Auto challenging. Exhalation pressure relief was helpful but not enough. I was used to a differential in IPAP (inhalation positive airway pressure) –EPAP (exhalation positive airway pressure) of 9 cm h2o. The patient controlled expiratory relief features like Respironics C Flex only allow EPAP to drop up to 3 cm h2o and I needed more. I still experienced discomfort and difficulty exhaling over any pressure of 11 or so.
As I struggled week after week trying to make AutoPap work, the information downloaded did reveal that my inhalation pressure was dropping to as low as 14 for some period of time during most nights. This was encouraging and kept me going. I had a positive attitude but I was often tempted to just give up and go back to BiLevel. I was becoming sleep deprived and was reminded of my first year on CPAP in 1989-90 and how hard it was. The old apnea symptoms started reappearing as I awoke with headaches, and had EDS ( excessive daytime sleepiness) but the worst part was experiencing aerophagia or PAPgas as I called it. This phenomenon occurs when the air is forced in to the esophagus instead of the airway. The air fills the belly and causes distension. The pain can be quite severe and the excess air difficult to expel. My stomach had been reduced to such a small size that I feared it might perforate by the force of air at my high pressure. This was happening to me almost nightly with pain and discomfort disrupting my sleep. I made the decision to return to BiLevel, at least to help repay sleep debt. Every other month or so, I would give AutoPap another try to no avail.
Finally, in early 2005 Respironics sent me a prototype BiLevel to trial. It was an AUTO BiLevel, the first to arrive in the US market. I was so excited and thrilled when it worked for me. The downloaded information showed a vast fluctuation of IPAP but at least I could finally sleep through the night and felt well rested.
I had to chuckle. I lost 110 pounds in 2004 and looked and felt a heck of a lot better. I was no longer a diabetic and experienced significant reduction in my cholesterol and triglycerides. Overall, I had accomplished my health goals and I was thankful. Yet it appeared that I would not be “cured” of my sleep apnea. I had mixed emotions.
Over the next years I would continue to use Auto BiLevel which seems to be my optimum device. It has been a roller coaster ride watching the graphs roll up and down over the months. My average IPAP pressure fell to 12-15 range for a brief few consecutive months and then without reason returned to 18-20 where they remain today.
I have maintained my weight loss and remain free from diabetes. My prayers were answered. As for the apnea, I have to admit I am more surprised than disappointed that my significant weight loss did not change my apnea condition.
I have an opinion about why my apnea was not affected. It all has to do with why I have sleep apnea in the first place. Like most patients, apnea is caused by a variety of physiological reasons. For me and most, at least one of those reasons involves the tongue. I may have lost 110 pounds, but I doubt that my tongue lost even a fraction of an ounce. It remains the same, too wide for my narrow jaw. The same tooth marks that run down the length of both sides of my tongue are still there and so is my apnea. I can live with that.
The truth of the matter is that I find BiLevel use a source of comfort and security. Anyone reading this might find that hard to believe, but it is true. If you have not read Part 1 of my story, please do so. Every now and then I read it to remind me of what my life was like before apnea diagnosis. I don't ever want to return to that state. When I retire at night, and pull back the bedcovers my hand reaches for my mask. It's an automatic behavior. There is no conscious decision to make, no resentment, no quandary. I trust that it will assure me the best possible sleep. Any fear I might possibly experience occurs when I lose electrical power and cannot use my machine. In nearly 18 years I have only lost power on a few rare occasions. On those nights, I do not sleep.
If you are reading my story because you think you have sleep apnea, please be tested and have it diagnosed and treated or ruled out. If you use a CPAP and think weight loss will cure you, consider my story. If you are considering gastric bypass, do the research to determine which procedure suits you and your health situation best. The most important advice I can share with you is to choose your surgeon wisely. Make sure they are considered experts in their field and have done numerous successful procedures. It's a risky surgery as all are, but I am fortunate to report that it was one of the best decisions I made. My only regret is not having it done sooner.
I'm a hosehead for life and that's ok with me; CPAP, live long and prosper!