June 16, 2015
Good Morning! Today is the big day. Today is the day our insurance company approves or denies the gastric pacemaker. We of course, and so badly, hope they approve. We are so hopeful that we went ahead and scheduled the gastric pacemaker surgery for this Tuesday, June 23, 2015.
My nausea is almost constant and the vomiting episodes are, with the help of a lot of intravenous medications, only slightly better, at best. I continue to battle poor blood glucose control, dehydration, weight loss & malabsorption of oral medications.
Now, more than ever, it's apparent that what we've been using to treat my severe Gastroparesis is ineffective. The nausea and vomiting persist despite aggressive intravenous medication management. The motility drug that was showing true promise is no longer an option for me, as I had a severe allergic drug reaction to it. If I want a chance at a better quality of life and, quite frankly, more years of life, I have no other choice but to try the gastric pacemaker.
I cannot continue to live like this. Long hospital stays that take a toll on our finances and put a huge strain on our marriage & relationships; repeated ER visits; rising medical debt; unemployment; and, extra help with our daughter, Hattie, do NOT add up to the quality of life I envision.
I cannot live this way because it directly and negatively affects my lung function. Dehydration, malabsorption of medications and nutrients, low energy, nausea, vomiting and pain, all of which are consequences of Gastroparesis, make it next to impossible to do 3-5 nebulizers per day, sterilize the equipment, perform airway clearance twice per day, exercise, and manage my cystic fibrosis (CF) related diabetes.
Add the time, energy and cost it takes to go to multiple doctor's appointments each month, most of which are 3.5 hours away, and you get the perfect recipe for disaster: inability to stick to my daily CF & diabetes maintenance routine. If I don't stick to my daily routine I will, inevitably, need a pulmonary 'tune-up', which usually results in a 2 week hospital stay.
So, like I said, the gastric pacemaker is my only choice for the time being. I still plan to go and be evaluated by two other CF centers in my region. I really want second opinions re: gastrointestinal issues in adult CF patients. If the world was a perfect place I would get these second opinions before making a decision on the gastric pacemaker. However, I have learned that getting in to other CF centers is a long and arduous process. For instance, by the time we go thru all of the 'steps' that each center requires, the earliest I can be seen is late summer or early fall.
Keep your fingers crossed, everyone! I'll keep you all posted as soon as I learn of a decision. It's because of your generosity that, no matter what the insurance company says today, I can continue to receive the care that I need right now and in the near future. Your support and love and generosity will, despite the insurance company's decision, see to it that I get the gastric pacemaker. Love to you all.
Until next time,