I am just going to give a fair warning that this post will probably be a lengthy one...so you have the time to stop reading here if you want to! Bronson has had a very up and down week. I will say that it seems like he is having more good days than bad days. He has been eating more real, solid food this week...and he seems to really be enjoying it for the most part. He has had to take it very slowly though. Yesterday was a bit of a frustrating day, as he had excessive diarrhea and vomiting for the first time in a few days. When that happens, it just takes all of his strength out of him and he has a hard time recovering. He has adjusted well to his TPN and lipids, and we are working our way from a 16 hour (7pm-11am) cycle, down to a 12 hour (7pm-7am) cycle. It has been a week now, so I am hoping that another week of it, and we may start to really see some improvements. We got a call from his hematologist yesterday, that his blood counts were low and that we needed to get him out to Northside to be Type and Crossed so that he could get 2 units of blood today at their infusion center. Luckily, we were already going to be out there for an appointment today with the transplant team (Dr. Bashey). That brings me to the complicated part of this post. Today was supposed to be the day that we found out if he was going to be a candidate for transplant or not. However, as we were sitting in the infusion center, I got a phone call from the transplant coordinator. She said that Dr. Bashey had been discussing some things with his cardiologist (Dr. Priester) and that we would definitely need more definitive testing of the heart. They feel strongly that he has cardiac amyloid based on EKG, echo, labs, etc..., but they want to be 100% certain of it before denying us the transplant. So, I talked to the cardiologist tonight, and he has placed the order for a Cardiac MRI to be done at Piedmont by one of his fellow cardiologist. The kicker to this, is that if they have to use contrast, due to his kidney failure, he is at increased risk for what is called systemic nephrogenic fibrosis. In other words, he would lose all function of his body and it would essentially feel like he was wrapped in a cast. If this developed, it probably would not develop for several years. Bronson said he wanted to proceed anyway, so we are hoping to have this done mid December. They will first do it without any contrast, and if they see what they need, then he wont even need to proceed with the contrast portion. If he does not see what he needs, then they will proceed with the contrast, and maybe even a cardiac biopsy. Finally though, this will give us the answer to the million dollar question...whether or not he indeed has cardiac amyloid. If he does, then no transplant, and if he doesnt, then we can proceed with further evaluation for potential transplant. Currently, regardless of his heart function, he is not a candidate right now due to his functional status. He is still so weak, and is using a walker intermittently. Dr. Bashey would like him to have some physical therapy to work on his strength, and continue for another month off any chemo to hopefully give his body a chance to start recovering. One of the biggest concerns is that his excessive diarrhea is not actually chemo induced, but could be amyloid in his GI tract. Dr. Bashey wanted to talk to his hematologist to see about doing a potential GI work up (colonoscopy and EGD for biopsies). They are thinking that his kidney failure is most likely due to the diarrhea and dehydration. Dr. Bashey said that he would recommend us going to Boston University for a second opinion, even while all this other testing is going on. So, we will wait for it to be approved by our insurance, and then our records can be sent there and an appointment be made. We would most likely fly up there for 3-4 days of appointments and complete testing, and that could open the doors up to much more advanced treatment and/or clinical trials. I am tired from typing all of that, so I am sure you are all tired from reading it! I wish there was a way to not make these posts seem so complicated. I try hard to put things in simple terms...I really do. His disease is just so complicated. Thank you for all of the wonderful words of support and encouragement that you post, text, call, mail, etc... Sometimes, its exactly what we need to hear. We would all be lost without our friends and family, and thank you just doesnt seem enough. Continue lifting us up in prayers, and if I dont post before next week, I hope you all will have a Happy Thanksgiving!! I know I have so much to be thankful for!!
Posted on: Fri, 21 Nov 2014 00:56:44 +0000
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