Hi everyone! I know I’ve kept y’all waiting for a bit, I’ve been trying to process everything myself over here before I try to explain to everyone else.
Tuesday, the 6th I went in to learn which rejections I have, what stage/numbers I am in, what the plans are. It was a bit more than expected and a lot to process but I have an amazing support team and so many people praying over me.
So now for the results;
As many of you followed me along my crazy train from last years rejection you’ll know it was probably the worst fewmonths of my life. Very hard on my body, hospital stays from Sept-June, and all around a pretty big depressive time for me, family, and friends.
This year I have the same exact rejection but about 100x worse. As a few of you know I have a pretty annoying clotting issue, anytime I am off of my blood thinners I get a DVT pretty quickly. Very annoying. So I will be receiving a “IVC Filter”. It’s a filter that they place into the attery that goes to the heart, and the lungs “filtering” any unwanted clots while I can’t be on my blood thinners. I am kind of nervous as they do have to go in through my groin and all the way up into my mid abdomen. They obviously do these proceedures quite often and it is very well known but new things can be just a bit nervewracking.
So I’ll be getting that tomorrow along with a line in my chest for my first round of treatment which I am not as nervous for. I will be getting one of the same treatments that I got last year, this year, but only once every 3-4 weeks which is so much better. In the next couple weeks I then will have to decide if A: I qualify for a treatment that is still in the expereimental stage and if I do qualify if I want to risk trying a new drug and getting worse/not better at all or just risking it and having to do something else anyway. So that will be decided in the next couple of weeks. If I do not qualify/choose not to do that medication I will have to do chemo (or may have to do it anyway depending on how all these things go.) You’re probably thinking “Chemo? you have cancer?” Nope, apparently I do not have cancer just a pretty serious cell conditon that is attacking my kidney on top of all the other things attacking it at the moment and how they treat it is, unfortunately, chemo. You know its not great when the doctor then apologizes and says good luck to your family.
I have had the rest of the week to try to process at least a little bit of what will be going on in my life within the next couple weeks for however long until my kidney decides this is enough and cant take it anymore. I will be doing 24hr urines every other month to try and catch my kidney function before/when it drops to 20%. At 20% I will then be able to start testing my potential donors one at a time. If I find a match before I get too low I might be able to skip dialysis again which would be great as chemo, IvIG, and all the other stuff I’ll be going through will be so hard on my body already. With all this being said, I really just need prayers. So. Many. Prayers.
Prayers for my sanity as I have been in a huge depressive episode these past few months trying to once again tell the doctors and care-takers that I have infact never started feeling better since last year. Prayers for my nerves as I have to go through some new things with very high anxiety which does not mix well. Prayers for my family as they all are going through this just as much and I am. And prayers for the medical team, let God have his hands on them as they prepare all the treatments I need. And prayers for tomorrow especially, as it is the first step of starting all of these big things so quickly. And thank y’all for being so great at praying when I need prayers, listening when I need listeners, and checking in on my family.
I should also be getting hernia surgery this coming week. No date scheduled yet just waiting on surgeon to look at all my CT scans. So lots of recovery upcoming from that.
Thanks again, y’all. I will be trying to update as news comes!