Well, in my last post I was getting ready to start the colonoscopy prep. That went as well as could be expected. Anyone who has been through it will know what I mean! ;) Thankfully it didn't cause any big acute issues. I also made it through the endoscopy/colonoscopy. I was trying to wait to update until I had some final results from the biopsies...Unfortunately, I lost track of time and it's been about 3 weeks. Sorry! I probably should've given you all I knew and then added on later. Ya know what they say - better late than never! ;) Anyways... I received the final results yesterday at my hematology appointment. I don't have any bleeding, ulcers, or polyps in my GI tract. I had some redness in my stomach, but the biopsies of that were normal so it's nothing to worry about. The stomach biopsies that they stained for mast cell activity came back positive...diagnosing me with Mastocytic Enteritis which means I have too many mast cells in my stomach. This explains why I have such issues with food and have to have a feeding tube to bypass my stomach for formula and medications. It is such a good thing to have this diagnosis! No, I'm not saying I'm glad I have it, but if I'm going to have the symptoms, it is good that I have the name for it because, sadly, I never know when I will come across a doctor that doesn't understand and jumps to conclusions about how they don't think I really need a tube and wants to just get rid of it. I now have proof behind the "theory" that my specialist has had from the beginning that I have too much mast cell activity in my stomach, causing me to need the tube. My treatment doesn't change with this diagnosis, I just have a name for it now.
As I mentioned earlier, I had an appointment with my hematologist yesterday. My anemia has slightly improved! He's very happy that the Hohn is still working, but He is still very concerned about my clot issues. I'm running out of access, and if they try to put PICC lines in my arms (where the clots are), they will most likely dislodge at least part of a clot which will send it right to my lung. That is why my arms are no longer usable for PICCs. Even though I have done amazing with this Hohn line so far, he is certain that it is inevitable that I will come to the point where I won't have any safe vein options. He said we need a plan for when that does happen. I was hoping we wouldn't have that conversation, because its much easier for me to put it out of mind and not grasp reality. I explained how I'd rather risk death from blood clots than risk death from reactions. I just don't want to spend however long the Lord has me on this earth miserable from constant reactions and ER trips from stopping my IV diphenhydramine (Benadryl) pump. I requested that, when the time comes where I no longer have a safe access, they slowly decrease the pump and see if we can get some other way of control over the reactions and, if nothing works, then make the decision between clot complications and reactions. I just don't want to be miserable again. I'm uncomfortable enough with the pump, but it was pure torture and near death before the pump. I don't think I've ever had such a difficult situation and decision like this. I asked him if a procedure to remove the clots would be an option for me. He said it is very dangerous and isn't very successful for older clots like mine. So, he really didn't want to do that.
I have been protecting this Hohn line with my life. I am pretty much home bound right now because the slightest trigger and my mast cells could easily reject this line with yet another blood clot. I could be described as having a big case of cabin fever and a sizably bigger case of paranoia right now! I'm seriously not really leaving the house for anything other than doctors appointments. I've been watching church on livestream, and when I'm scheduled to do music in church, I go in close to the time for us to sing/play and be out the door right after we finish to go home to watch livestream. It has been a bit of a strain emotionally not to be able to be out, but it's much better than being careless and getting more clots. My sisters and I are scheduled to play our instruments on Sunday, I'm scheduled to play a trumpet solo on Wednesday, and our family leaves for a week at a camp in the mountains on the next Saturday. Where we stay in the mountains has a reputation of stirring my mast cells up and causing PICC issues, so I'm quite concerned about my Hohn...but at the same time this is a fun time we look forward to each year. We certainly will be leaving for home at the slightest sign of issues with my line, though. Please pray that my mast cells won't reject my Hohn with all the upcoming exposure to triggers!
I've been very achy and tired lately. We are going to stop my vitamin D pill for a couple weeks and see if I'm reacting to it since this started after starting the vitamin D. If the symptoms go away, I will start it back and see if they return. If they don't improve I will go back on it, assuming the vitamin D pill isn't the cause.
Thank you so much for praying for me and encouraging me!
- "The Lord has promised good to me,His Word my hope secures;He will my Shield and Portion be,As long as life endures.
- Through many dangers, toils and snares,I have already come;’Tis grace hath brought me safe thus far,And grace will lead me home."- John Newton
