After a brief break I am back to share my stories, worries, concerns, joys, and all that falls in between. I believe there is joy in all we go through. It is simply the intricacy of any situation that gives us the window to the beauty. I have been through a few twists and turns since we last met.
For several months, back into late 2014, I have been having these strange, painful, sudden then lingering cramps. Cramps are the only way I can describe them for lack of a better term. In mid March one of these sudden pains came on and dropped me to my knees. A pain that became suddenly debilitating, even to the point that I could not take a breath or call for help. After staying frozen long enough for the pain to settle down a bit, I called my doctor. The only way I can describe it is imagine you have eaten a super sized meal from McDonald's then took off at a full on sprint. A side cramp to knock a giant out would hit you like a brick. Now multiply that and imagine it remaining constant, but with sudden jolts sporadically. I went back and forth for a week or two with my doctor until he heard enough. He told me to get down to the hospital for admittance. Thankfully my brother and sister-in-law dropped everything to help with our son. My husband's family was ironically on their way to visit. It became a tag team situation until most of his family left, leaving behind my mother-in-law with us as long as we needed her. That was a true blessing.
Once admitted I was put on a clear liquid diet. This would be a major downer for anyone. One of the worst downers for me. I have been well over anything lemon/lime or jiggly for years now. Being a diabetic made it more challenging, as my doctor had noted it in my diet (explanation to follow). The next morning they quickly did an EGD/ endoscopy. I was still ordered to stay on the clear liquid diet thereafter. I tend to vomit often after tests or severe pain and this scope proved no different. The rest of the day was not worth ingesting a thing. IVs are certainly a life saver.
Over the next few days I was run through a battery of tests. So when I woke on that second day I read my diet allowance through and through, time and time again. Italian ice. Ok, that sounds pretty safe. I love the frozen lemonade or cherry ice you can buy almost anywhere during summer months. I called down and ordered a cherry Italian ice. I was quickly swept away for a quick scan. Upon my arrival I saw this melted red substance, somewhat jelly-like, with a strange white cream (if that's what I want to call it) which was obviously not clear yet allowed on this diet. It was not something I thought I'd like no matter what diet I needed. I decided to call down for some ginger ale considering the vomiting was only tapering off. "You are not allowed ginger ale."
"But it shows it IS allowed on the clear liquids options..."
"Well, you are diabetic and have already hit your carb limit until lunch."
Carb limit?! What exactly is my limit? I had no idea. The person on the other end and I played our little game for another few minutes. Me explaining I am Type I and have an insulin pump as well as being on the clear liquids reiterating my limited options. Him explaining I did have the option of a broth, which is also something I despise, or wait 4 hours before ordering. At this point I ended the conversation defeated. Then a light bulb. I asked my husband to run to a gas station and buy me some darn ginger ale for goodness sake. The nurse happened to be in my room at the time and said she would sneak down to the cafeteria and grab something she thought I could stomach. Within minutes I had some lemon/lime soda (oh yuck) with a small cup of orange sherbet. I asked for a cup. I decided to put the sherbet in the cup and pour the soda over it. Instant party punch. My husband then comes in with a six pack of ginger ale with a surprised look on his face because there I was with the lemon/lime soda he saw. When I explained, he was delighted at my starving, innovative ways to find a happy place. I was in such excitement when I got bumped up to a full liquid diet the next day, especially since we now knew how to work around the ridiculous carb limit.
We knew how to work our way through a lot of this due to previous hospital stays with similar restrictions. I slowly worked my way up to smoothies. With a little more substance in me I was overjoyed by getting the chance to roam the hospital when I got restless....every few minutes in my case. The pain had lessened up enough, though I was doped up pretty well by this time. I certainly could tell when my re-up was necessary. Throughout it all my doctor came by once or twice a day to check my progress or decline as well as give any updates to my family and me. Much of the stay blends together as you may imagine.
Two or three days in he came in with some information that set the stage. The endoscopy showed irritation around the leads of my gastric stimulator. There is a clear print out of risks with this stimulator, as with any other medical need, where it lays out the possibility of migration of leads, perforation of the stomach, and rejection. At that point in time, all they could definitively say was there was irritation and inflammation. He needed to communicate with Medtronic, the manufacturer, and was going to try to touch base with a national expert he knew well. The manufacturer asked for my records while communication with the colleague was difficult. Days passed with little to no new information or plan of action. It was discussed that the leads and/or device needed to be replaced. My doctor was tossing the idea around about different casing around the leads and different materials to hold them in place hoping to prevent the irritation. By that time he had determined it was rejection of some sort.
Along the way he asked if I thought I would be able to handle food. My eyes lit up, but my belly second guessed me. I opted to try applesauce with little confidence. My lack of confidence turned out to be a true finding. Vomiting ensued so I moved at a snail's pace. At day six I tried some dry cereal that soon turned in to shards of glass going slowly through my digestive system only increasing the pain I was experiencing. I gladly went two steps back and crawled even slower to solid food. By day eight, although I love my shakes and smoothies, I was ready to try again. This time I ordered scrambled eggs, a staple usually, and some potatoes, not hash browns. I made it through a few good bites. I was pleased to show my doctor when he stopped by. He wanted to see a little more before he would discharge me. At this stage of the game he had come to a decision to get me stable, discharging me, and continuing to search for a solid answer with me as an out patient. A couple of days later, I was up to half a plate of eggs with potatoes and showing clear signs of holding down fluids. He finally discharged me. He wanted to turn up the device a bit in hopes it would allow me to eat just a bit more. He also wanted to check back in two weeks for a follow-up with possibly another bump up. There were plenty of loose ends to tie up, but some strengthening and recovering time at home would be very beneficial.
I have seen him several times since. We have been left with the same lack of knowledge from others as well as the manufacturer. In another patient a replacement of leads or the device would be a no brainer, but my situation is different. What if my body just rejects what they do? What if my body is not strong enough to withstand another really major operation? How dangerous is this all? Neither my doctor nor I had any clue what our next step should be. He wanted some firm answers or strong opinions from others before he jumped the gun. In the meantime, he wanted to compile as much information as possible to present to someone or to show him light through the open door.
Many of these tests and scans were frightening, none painful in lieu of the pain we are trying to mend.
The last scan I had was a Gilliam scan, named after the man who discovered it. This is a three day nuclear medical test. The patient is injected with radioactive tracers. A special camera takes pictures from several angles while the patient lies still, usually on their backs, for 30 minutes to an hour. For me, that is when pain is at its most high. Flat on my back. On the third day a radiologist reads them and if something is seen at that time they will decide if more is needed. That extra imaging is an additional hour long scan. Lo and behold, I needed the additional time. According to the hospital staff my doctor would have the results within two days. He then would contact me with said results. Not my doctor. He is absolutely phenomenal, but he takes his time combing through everything before he says or does a thing. Admirable in this rush-and-go society.
Yesterday was my most recent appointment since the Gilliam scan. I am always a nervous wreck before appointments, no matter the health need, especially with my gastroenterologist. Add in the hectic freeway driving and navigating through Dallas equals an adventure in Laurentown. I was discouraged from the get-go with the simple number on the scale. I remind myself of my efforts in those moments. The doctor came in shortly after. Our assumptions proved true. The scan showed significant inflammation and irritation around the leads. The solution to this problem, you might ask. Remove the device. He decided replacing the leads would not help because there is no other casing. If my body is rejecting the casing, it would be wasted effort. The only solution is to remove the device. He then said we could leave it in if I could bare it until the battery dies. He and I went through a maze of, what we thought was, logic. I asked if there was any immediate danger such as additional damage being caused. He said there was not. I asked if it is affecting my small or large intestines and again he said it isn't. I asked how long the battery is estimated to last considering I am coming up on my second birthday/anniversary. Based on my settings his original estimate was three or four years back when I got it so that encouraged me. He said normally they simply replace the battery when it dies, but what he could do is replace the entire device and see where that leaves us. All the worries of keeping it in were somewhat hashed out. Ultimately, the decision is my own.
I have gone through this same scenario in my head for some time now. I have often told relatives and friends that I don't know what's worse, this pain or the pain I experienced before I had the stimulator. Now, that is exactly what I face. Here are my thoughts with some reliable opinions of others. With the device still in I am feeling pain, constant with sporadic jolts. Without the device I was constantly distended only growing as the day went on. That caused pain that increased throughout the day leaving me with a heating pad on my abdomen every night. With the stimulator in I am able to enjoy some "normal" food without intense fear. Without, I never knew when I could handle anything. With the stimulator vomiting and others are at a minimum. Without the stimulator it was daily and sometimes multiple times a day. With or without the stimulator I can hardly wear anything but elastic clothing. Without the stimulator I would have more canvas for my insulin pump and continuous glucose sensor. I hardly weigh a thing, but who knows if or how much that number will drop if the stimulator is removed. I was also reminded of how much more isolated I was before I had the stimulator. I would sleep a lot usually ending my day around 6:00p purely out of lack of energy and strength. I was also candidly reminded how close I was to death before I had the stimulator. In writing this post that statement has come to the forefront of my mind because it is a reminder that I celebrate the implant date by calling it my birthday. It was a second chance at life that day. I was blessed to have the option.
As I tie up my post for now, I leave you with the question. What would you do faced with a decision so serious, but choosing the lesser of two evils? Do not get me wrong, everyone has their cross to bare. I am simply asking how you would come to a decision. Would it take an instant to make a final decision? Or would it take some intense thought and needle searching for answers?
I will not lie and say I am ready to make a choice. I can openly say this is weighing heavy on me. The difficult part is finding an objective view because the pain is indescribable no matter the choice. The uncertainty and isolation are the same no matter the choice. I have love, support, a son who is a tornado of joy, a hard working husband, a nice place to call home, and more. I get out and interact, just not as much as my counterparts. I go on long walks. I read good books. I have so much and yet somehow the hardest decision clouds all of the amazing gifts.
Today I choose to hang in there. I choose to manage my symptoms as they stand. My doctor said my physical activity and life should not be an issue. He said to do what I can handle. So I choose to listen closely to the pain and work around it. Tomorrow, next week, next month I may change my mind. I may decide I can't take it anymore. I am at peace knowing what it is, but I am war between emotions and clear thoughts. And you yourself are probably reading this with a major decision in your life. Maybe we should just stick to the moment to see where it takes us.
As I said to my doc as I was leaving his office, "trust your gut" no pun intended....but it sure is funny if it was intentional.
