Mountains Climbed

Nine Months has gone by since my new life began. I have proudly called it my second birthday many times and truly mean it. July 31, 2013 I got an Enterra gastric stimulator implanted. A device that has forever changed my life. I had been suffering a severe case of gastroparesis that was not responding to treatment. I went from a slim frame to a skeletal frame, losing more than 30 total pounds throughout the course of the disease. It was recommended for the umpteenth time that I go to Johns Hopkins University Medical Center. After a consultation in my hometown for a feeding tube determined my comorbidities would be exacerbated, even life threatening with forced nutrition, the surgeon had an 'out-of-the-box' idea I had never heard. Leaving that appointment with little information other than an "We'll be in touch after some research..." I was devastated. I had been weakening and weakening physically, but more so emotionally. A week later, a doctor had been chosen in Dallas, TX they were sure could help. But I also had to go to Johns Hopkins in a last ditch effort to save my life.


Within a month of the consultation with the feeding tube surgeon, we were on our way to Dallas to meet this amazing doctor. That very first appointment, he made a clear decision that my only hope was the gastric stimulator and I had plenty of history to show I was a great candidate. Not only do the physical ailments have to be there for medical devices such as these, but mental state plays a big roll. They do not want to implant a device or even attach any device to a patient who is not going to follow what is necessary for the device to work. For example, an insulin pump patient (which I also have due to Type I Diabetes) goes through the same mental test, insuring the patient has the right mindset to have a device attached to them 24 hours a day. You'd be amazed at what these things effect in daily life. He needed to be sure I understood everything. The device is implanted in a subcutaneous pouch in the abdomen (made by the surgeon) and leads attached to the device are guided through the abdominal muscles into the lining of the stomach. Recovery time and full effectiveness usually take about a year. You do see the device bulge out under the skin and you have to learn to adjust you movements accordingly. The battery lasts about five to ten years. At that time it is determined if a new one can/should be implanted. While explaining this he monitored my reaction and comprehension to determine if I was a candidate. Thank God it turned out positively for me. He then needed ammunition for the insurance to agree with his findings.


This time last year I was going through some brutal testing to prove to my insurance company why I was a candidate for such rare treatment. It actually isn't even considered treatment. The FDA classifies it as a humanitarian device, which simply means it improves quality of life but does not treat or correct a problem. That is why so much is needed for the insurance companies to even consider it. I was taken off my motility medications as well as my digestive enzymes and ulcer preventative medication. I take digestive enzymes because my body absolutely does not produce them. The ulcer preventative is due to Pernicious Anemia in which the inner lining of my stomach is eaten away by my immune system as well as having an alkaline environment as opposed to a normal pH level in the stomach or an acidic much like a GERD patient may have. The alkaline state is just as dangerous, if not more, than an acidic state in the stomach. I also have Celiac Disease in which the immune system is attacking the lining of the small intestine when gluten is in your system. That all being said, you can imagine I was incredibly uncomfortable. The process took about two weeks. I had endoscopies, gastric emptying studies, MRIs, CT scans, and I even swallowed a pill with a camera and other scanning properties that traveled throughout my digestive system giving a better look at what was going on inside. That in itself was the most difficult yet interesting one of them all. I was finally told the doctor had enough ammo and I was free to return home, but it was also necessary to be seen at Johns Hopkins to solidify it all and be sure every stone had been uncovered.


Once I returned home from Texas, I had six days to prepare for my trip to the scariest place I had ever gone. I had been seen at the Mayo Clinic in 2008 following through to the beginning of 2009 (not continuous). I was terrified then. Now to be sent to an equivalent or an even more progressive facility really puts mortality in front of your face. Luckily, I had my husband and my son along as well as an amazing aunt and cousin who flew out to Baltimore just to support me. That will never be forgotten- all the support. My sister even set up a donation account to help with travel and medical expenses. I was blown away by all the love. A quick trip into the doctor's office at Johns Hopkins lead to a few minor in-office tests all coming out as expected. This gave the doctor the ok to agree with the opinion of the previous two doctors I had seen regarding the need for the gastric stimulator; if for nothing else but the increased caloric allotment. The only stipulation, we had to move to the Dallas/ Fort Worth area to be closely monitored for life. I had never lived outside of New Mexico other than the two years of back and forth to California when my dad was alive. A move that was absolutely not planned had to be made within six weeks.


A feat I thought was impossible slowly began to play itself out. Years and years of pain and suffering with little to no answers in terms of relief- just diagnosis after diagnosis with treatments but relief was hardly part of the equation. My prayers for respite had been answered, loudly. But as those moments of change began, all I could think was the world was moving too quickly. Again, with the incredible support of my sister and extended family we found a place to live that fit all of our requirements. With the help of my parents we were packed and ready to go within those six weeks. My husband had to stay behind to continue working until logistics got worked out. Thankfully, he was only there three weeks before he could join us. He made his move two days before the beginning of this new life. All the while I was wasting away even quicker because life had gotten away from me. I couldn't believe it all fell into place so easily yet so inconceivably.


Entering the hospital, I was down to 80 such pounds. I did not ask the exact number. I had to fast as you normally do with most procedures involving anesthesia. I have had to fast so much in recent years, I will be glad to never see lemon-lime soda or Gatorade as well as lemon or lime Jello. The next day, all I remember was being excited to finally get the stimulator and then, waking up. I woke up in incredible pain as if a fire had been started in my abdomen and nothing was there to stop it. I am not talking heartburn type fire, I am talking roasting-chestnuts and accidently falling in the fire. A nurse immediately came to the rescue with pain relief pushed into my IV. My husband was allowed to see me shortly after that and I remember him asking how I felt. I said, "Like I have been hit by a truck....but a good truck!" He must have passed that along because that phrase has followed me since and I love it.


Those first few days were difficult. I was expecting or strongly hoping I would be able to eat right away. I actually could only handle smoothies but quickly moved on to tiny doses of pizza and French fries. What else would you chose after not being able to eat solid food for so long? I thought life was going to be better, but that I was going to be weakened and forever changed by the surgery. The timeline was given to me, a year towards recovery and full effectiveness. As the year passes, I have reached many milestones, but in the back of my mind every month I think "Look what this has done for you. This is the best it can be." I am proven wrong time and time again.


I recently have reached milestones I have dreamed about for years. You may get tired of blog post after post talking about the unthinkables I have reached, but that's the reality of my journey. And isn't that incredible? For the first time in two to three years I was able to put jeans on with little to no discomfort this past weekend. Previously the waistband and button that have no give would only cause pain to my constantly full and distended belly. Then, in the past nine months, I would try jeans on every now and then, but it would still cause pain, only now it was the device sight and the belly discomfort. I have saved my favorite pairs of jeans out of hope of one day wearing them. As I was doing laundry on Saturday they caught my eye while putting away my normal attire of yoga pants. I stopped in my tracks and decided to try them on. I put on a loose pair first and they felt alright so I moved on to my favorite pair. They felt fine. I squatted, I bent, I twisted, I sat...and no usual pain.

The pain at the site had now turned into just slight discomfort. That's normal with jeans considering none of us ever find the perfect fit. I danced around with my son for a little while and the jeans still felt alright. I made him take a picture out of sheer glee. I have not challenged myself to wearing them all day, but I will get there. I felt so accomplished, my mind has been reeling about what else I may be able to do. This morning a challenge was calling my name.


I usually rotate walking and yoga for exercise about five to six times a week. It's a great time for centering myself. My walks includes my little dog Chewy. He is a Dachshund/ Chihuahua mix, that's what I mean by little. This morning I took him for our usual walk at a walking trail at the college across the street. It's a one mile loop and we normally do two. Today, as I normally do, I saw a few joggers along the loop. I used to be a long distance runner so that itch is always there. I haven't been able to run for at least two and a half years or more. Today I thought "could I run a mile? I could try....but stop if it doesn't feel right. Stop." So, I had this little discussion in my head the whole time I was on my walk. Chewy couldn't run with me for certain so I walked him home. I told my husband what I was going to try and he was reluctantly excited. I went across that street, I got on that path, and I ran. I thought I would surely wimp out a few steps in, but my body just fell into natural motion. I didn't get out of breath. I didn't push myself. I just ran a mile. I felt ecstatic. I walked home feeling more powerful and accomplished than I had in years all the while knowing this incredible device is helping me climb mountains.


Not only have I been able to do these things; eat more solid food, go to restaurants, wear jeans, run again, even build strength with yoga not just maintain the little I had; but my heart and mind have grown exponentially too. Years and years of day in and day out malaise is so exhausting. Imagine waking up feeling like you have the flu everyday, but you still have the same responsibilities and expectations on you as any other person in the world. You put on your best face and muddle through the best you can. Every now and then a burst of energy comes and, a phenomenon described by doctors, you go into this manic state, trying to accomplish as much as you can while the energy is there. So, I may be glued to the bed one day and the next day a little feeling of increased energy has me rushing to the store, cleaning the bathroom, washing dishes, vacuuming, etc. until the energy fades. You crash and burn then pay for the overexertion for a few days thereafter. Now, I often still feel puny, achy, nauseated, flu-like but it has lightened up enough for me to notice. I sleep through the night sometimes feeling refreshed in the morning. All in all, the humanitarian device has done exactly what it is intended to do.


The thought I'd like to spread to the world is open your eyes to the world, don't focus on the daily grind. When I stop to write my blog or in my journal at night, I am often tired and in need of a release. As I go about my writings I start to uncover all the little jewels I missed throughout the day, the week, the month. This makes me turn to my son and see how far he has come. Not a day has gone by with him on this earth, that I have not seen a miracle up close and personal. But to know he has lived his entire life with a sick mother only speaks volumes to who he is today. At such a young age he has more compassion, wisdom, and intelligence than I see in the average adult. He challenges me intellectually on a daily basis. Sometimes I get so wrapped up in responsibilities I forget to slow down to embrace him fully. When I open my eyes, I see the glory of the world. I see how amazing he is. I see how beautiful the trees and the sky are. I feel all the improvements in my body. I see lights at the end of the tunnels when physical ailments overcome me. These mountains I have climbed will be in clear view for years to come.


I will actively continue and strive to keep my eyes wide open. The happiness I have felt these past few weeks is close to the elation I felt the day my son was born and the day I got married. How can the unimaginable continue to happen only to remind you how grand life can be?