Well, if any of you have been keeping up with me on Facebook, you would know that I recently underwent surgery to remove my appendix. All of this began last Thursday night, when I started having abdominal pain seemingly out of nowhere. Being that I have had kidney stones in the past, to me it seemed like it might be another kidney stone trying to pass. I waited for my appointment with my PCP, because I knew that going to the Emergency Room would be a big hassle as well as the fact that I would probably just be sent back home. Things really did not improve from there, I was in the midst of a pretty bad Mito crash when we went in to see my doctor. He noticed it almost immediately, which was reassuring. I had been in the Emergency Room exactly a week prior to the appointment, and the reason for my ER trip was dizziness and some cognitive issues due to dehydration. Fluids have proven to be somewhat helpful during Mito crashes and kind of help me from going downhill more dramatically. We made the decision to do a liter of fluids on an outpatient basis, and came to the conclusion that I would probably benefit from doing this on a somewhat regular basis. So after that discussion, we also decided that GI needs to be consulted. During the IV infusion, I noticed that the abdominal pain did not subside. They gave me Toradol, which is IV Ibuprofen, and that really did not help my pain much at all. At that point, I decided I would like to have some additional testing done to determine what exactly was going on with my kidneys and other abdominal organs. Due to numerous disease processes, it is often difficult to discern what exactly is causing the pain. A CT scan was done without contrast and determined no abnormal findings. It was decided we would finish the IV infusion and go home, trying to keep me out of the hospital over the weekend.
Saturday was actually a really good day for me. I had enough energy to get myself into the shower and we were able to go to Mass. Justin and I really enjoy going to Mass together. It is a really good opportunity for us to grow together as a couple. We were able to enjoy a nice dinner together at Green Mill after Mass, and it was one of the best meals I've been able to eat in a long time. Around 2 AM, things started to get bad fast. My abdominal pain become unbearable. I have a fairly high pain tolerance, but I was screaming and crying, unable to get my pain under control with my home medications. I was very much unwilling to go in the Emergency Room, because I was afraid they were going to simply send me home. After nearly an hour, almost two of extremely horrible and unbearable pain, Justin finally convinced me to go into the Emergency Room. There, they gave me more Toradol which worked for a while, but it wore off. Then we tried Morphine which again worked for a little while but wore off. Our last ditch effort was Fentanyl, which followed the same pattern as the previous two medications. Dr. H was concerned, because she was not able to control my pain adequately despite trying to use whichever medications she could. At that point, we decided to proceed with a CT scan with contrast. It took over an hour for me to get all of the oral contrast down, and they also used IV contrast so they could really get a good look.
A few things came up in the CT scan. First being what we always see, that there is significant constipation. Because of my Mitochondrial disorder, digestion is a very tedious, time consuming, and painful process. This means that the entire process of eating and digestion, from start to finish, is extremely painful. More recently, my PCP started me on a drug called Amitiza, which is a relatively new drug for constipation. It has really helped for my constipation, but it still is not taking care of things. It is difficult to say exactly how much of my issue is caused by constipation, I certainly do not think that it is the sole cause for my health issues. However, there is an on-going concern I have that my muscles in my GI tract are not able to perform their necessary functions and as a result, food is not get digested or absorbed properly, nor are the wastes getting out of my body as it needs to. Dr. H suggested adding a medication called Lactulose in addition to the Amitiza to see if that helps with this on-going issue.
The second finding we saw was that there was a cyst on my left ovary. I have had ovarian cysts since the age of 14, and up until last month I was on oral birth control to keep them at bay. Now, ten years later, I am getting married next month. If you have been following my blog for a prolonged period of time, you would know that I have always wanted to be a mother. This has been a lifelong dream. Now that I am getting married, this dream is far more reachable than ever before. With that, a great deal of risk is involved. Timing needs to be as precise as possible, seeing as I have been in the midst of a pretty dramatic decline and my nutrition status is leaving a lot to be desired. Right now we are looking at adding yet another member to our care team, Dr. L. She is a religious sister who is specializes in Natural Family Planning, which is based upon the teachings of the Catholic Church on family planning. Our first appointment with her is next week. Dr. H at the time of the ER visit strongly recommended going back on oral birth control. For the moment, we are waiting until we have our appointment with Dr. L to make a more informed decision on this particular issue.
The third, final, and most shocking finding of all was my appendix. Giving you a background story, my CT scans have not shown any normal findings in my appendix since about last February. It has never really been clear as to what was showing up in my appendix, suffice to say all we could come up with is "dense material of unknown significance." At that point, it looked like the findings were consistent with chronic appendicitis. Because we were unable to get my pain under control, it looked as though an appendectomy would probably be the best approach to see if we could get the pain under better control. At that point, Dr. H left the decision in my hands, strongly encouraging me t do the surgery to see how things could go. I made the decision to proceed with the surgery, and we had me at the hospital about half an hour away by 9 AM. Originally I thought I was going to be directly admitted to the hospital, but they tried to admit me through the ER first. Then, it was confirmed that I was supposed to be on the floor, so they admitted me directly. Shortly after I had been admitted, I met Dr. R, my surgeon. I gave him a brief history of my issues and mentioned that we were working toward a Mitochondrial diagnosis. To his credit, he actually knew what Mitochondrial disorders were. We decided to proceed with an appendectomy. Originally he suspected Crohn's disease, so he decided during the surgery to explore around and see what he could see. During surgery, they decided to take out my appendix and rupture and drain the cyst on my left ovary. No abnormalities were found during the exploratory part of the surgery. This ruled Crohn's out almost definitely.
I was discharged Monday afternoon. It is unclear how much this surgery will change things from my stability standpoint. But so far it does not seem like things will change too drastically. I am working on controlling my post-operative pain.
We have some difficult issues and decisions ahead of us. I ask you keep this situation in prayer.
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