On Tuesday I saw my new GI doctor at the Cleveland Clinic. I saw him for the first time at the beginning of April. At the end of April, I had an endoscopy where they changed my feeding tube, took some biopsies, and did an endoscopic ultrasound of my stomach and intestinal lining and pancreas. We also did a good bit of blood work. Some of the results have been trickling back in, and I got a call from his office to schedule a follow-up as soon as I could.
Because I am still showing some neurological issues with no really cause, my GI doctor felt that there was still the potential to be some mitochondrial involvement and ordered some blood work that would give an indication either way. This is not the first time that mitochondrial disease has been mentioned, but it is the first time that we now have some test results that might point toward that rather than just speculation. I have put in paperwork to be seen at the Clinic by the mitochondrial specialist, so hopefully we will hear back from him at some point.
We also discussed the results from the biopsies that were taken during the endoscopy. The stomach biopsies show no indication of fibrosis, which is very good! They did show chronic gastric inflammation. Basically my doctor says the biopsies indicate that my stomach is irritated on a regular basis...oh really?? I had no idea...yeah, we both got a good laugh out of that =P The last thing the biopsies showed which is really good news is that the Xolair appears to be working! When I first had stomach and intestinal biopsies done looking for mast cells, I had an average of 68 mast cells per high powered field (hpf). Normal is considered below 20 mast cells/hpf. While I did have 2 samples showing over 100 mast cells, the average was 47 mast cells/hpf! Still more than "normal," but a good step in the right direction!
We also discussed some of the issues that were noted with my pancreas during the endoscopic ultrasound. I have been loosely diagnosed with chronic pancreatitis multiple times mostly because the ER had no other explanation for my symptoms. However, it appears that they might not have been too far off as there was pretty significant abnormalities noted throughout my pancreas during the scope. Chronic pancreatitis is a loose diagnosis anytime, and with all my other issues, this is more likely related to mast cell stuff. Unfortunately, this may mean that my sugars may not stabilize once I am off tube feeds like we hoped since it appears that there are actually issues with my pancreas. We are also discussing possibly needing to change the dose of my digestive enzymes that I take with food as I have been having increasing issues digesting. Since I already had an appointment scheduled with my endocrinologist for Thursday, we put any actual changes on hold until I talked with her.
So I saw her yesterday. The first thing we talked about was the new medication she put me on for my blood sugars. To make a long story short, we don't really know if the medication or Leni was helping me the most over the past few weeks, and since I have been having pretty awful side effects we decided to stop the medication. So thankful for that because the past month that we have been trying it have been ROUGH. For the first few weeks we didn't know why I was having these weird-for-me symptoms. It was only about a week ago when we connected the pieces and realized that my increase in symptoms came right about when I started the medication. Good and bad. Good because hopefully when I stop taking the med, these symptoms will leave. Bad because it will likely take almost a month for it to fully get out of my body...so I have to deal with potentially another month of these symptoms...
The next thing we talked about is my ongoing blood sugar issues. Because I am continuing to have these low sugars, and some previous testing was borderline abnormal/inconclusive, she feels that we need to do some more testing to make sure we're not missing something more serious. Anyone remember the Cortisol Stimulation Test I wrote about back in March? To summarize for anyone new to the blog...it caused me to go into anaphylaxis...since that was one of the borderline tests...yep, you guessed it...I have to re-do it =\ We're going to try a low dose of the typical stim test with the hopes that since it will be significantly less than the first dose, I might not react. Or at least if I do react, it will be not quite as severe a reaction.
You could say I'm a bit less than thrilled that I have to do this again. In fact, I'm actually legit scared. I hate anaphylaxis (in case anyone was wondering =P). Every time is terrifying, doesn't matter how many times it has happened. The "sense of doom" that is a symptom of progressing anaphylaxis is very real and very scary. It's one thing when anaphylaxis comes out of no where, it's another completely to knowingly enter a situation that has the potential to cause a severe reaction. I wouldn't have agreed to do this test again if my doctor didn't feel it was the best chance at making sure we're not giving me an incorrect diagnosis or missing something important.
We're doing everything we can to make sure things go more smoothly. We scheduled the repeat test on a day when the doctor that was in the infusion center the first time is working again. My doctor is in the office that day (one floor above the infusion center) and will be available if any issues arise. I have a friend "on call" to come get me should I have a reaction and be unable to drive home. All I can do now is wait 2 weeks, and start praying now =)
So the good is that we got some answers, are moving in the right direction, and I have 2 doctors who care. The bad is that we are still left with more unanswered questions than we would like. And like I feel like has been the case for so long, we're left praying. Praying that the repeat Cortisol Stim Test goes smoothly with no anaphylaxis. Praying that the medication gets out of my system quickly and I get relief from these symptoms. Praying that the adjustments we make to my current GI medications resolve the issues I have been having with few side effects. Praying that the mitochondrial doctor will agree to see me (sometime this century preferably) and that he will have some insight to my ongoing issues. Praying that despite all this, I can hold onto joy and not get discouraged with the lack of answers.
I am still so thankful to finally have a team of doctors who care and are willing to work with me to figure things out. It was not that long ago that I was still fighting for doctors to believe me. It is so incredible to be able to leave appointments with my doctors doing everything they can to help me and sort through my weird, unrelenting symptoms. Unfortunately, the reality of living with a rare disease is that even when doctors do care and want to help, there may be little they can actually do because so much is still unknown.
Please continue praying for wisdom for my doctors as they are considering my care and wisdom for us as we are making decisions. Pray that nothing will go to waste, the appointments that need to be scheduled will happen and that those that would not be good will not be. Obviously, please be praying the cortisol test goes smoothly and we get the answers we need. And most of all, please pray for some spiritual encouragement. These past few weeks have knocked me down both physically and spiritually. Some days I just feel as though I am crumbling under the weight of everything, and that is not me. Please pray that I am able to continue to find joy and peace in the midst of whatever may be going on physically.
And THANK YOU. During the past few weeks, I have struggled to pray. I have tried, but the tears come before any thoughts or words. It is during these moments that I truly rest on your prayers. I believe God is good. I believe He is sovereign. I trust that no matter what I go through, He can use it for His glory. I know I am right where He wants me. And I am okay with that. But that doesn't change the fact that sometimes the weight of this world feels crushing. When this life is more than I can handle, thank you for coming alongside me. When I feel like I can't look up, thank you for shining God's light to me. I know a lot of people struggle to pray because it feels like their words go out and answers are few and far between. Please know that your prayers are not going unanswered. Thank you for being a part of my life through prayer and that your part is not going unnoticed.
I still believe that God is and will continue to bring about VICTORY in my life this year. Thank you for coming with me and being a part of what God is doing. That VICTORY is being brought about through your prayers and support. This is not just a blog of my struggle with mast cell disease. This is a testimony of how God can use anyone and anything for His glory.
You know the phrase that used to play before (after?) certain TV shows years ago..."This program was made possible by viewers like you?" Here's what I think mine would say, "This life is made powerful by prayer warriors like you." God isn't finished with me yet. And He is using your prayers and support to encourage me and lift me up when I have fallen. Thank you.