By Today has had many ebbs and flows, and God has not only moved mountains but has crushed them! Last night was rough up a lot with chest pains and just couldn’t sleep thinking about today. I didn’t ask ahead of time what they were going to biopsy or the process because I am a big baby, lol! Made it there fairly simple, got lost once, but made it on time. They took 3 pieces from my leg, I am down for 2 weeks till they heal and wasn’t able to do anything today, daily bandage changes but so far just a little bit of pain. While Dr. Judge was doing the samples he said that Dr. Polydefkis would be testing it, and he would run it through the insurance but if the insurance denied it he was going to do it for free.
Tears just fell on how good God is that He has placed such amazing Dr’s in my path. Dr. Judge said they both understand how bad the ALA60 (thats my gene mutation) is and the best way to get ahead of it is aggressive. We talked about my chest pains. He said from my legs, stomach, and vein in my neck I am holding on to a ton of fluid, which means that the heart is getting stiffer and the disease is progressing. The stiffness in the heart makes it hard for the heart to push the fluid and then it just builds up. We are permanently upping my water pill. It was nice to finally meet him in person, he was awesome. I cried most of the way home, prayed and cried, it was not news I wanted to hear.
After we got home I got a call from John Hopkins, Dr. Polydefkis will see me Monday at 2 virtual for free. Him and judge talked and both are not happy with how fast the disease is progressing, they know the medicine I need to be on, the part is getting the insurance on board with paying for medicine that costs 1/2 a million a year. So while I was upset and crying in the car, and thinking that this disease was moving faster then I was ready for, God was moving and crushing mountains for me to be able to see the best and hopefully that the samples they got show the amyloid to be able to get me on the most aggressive medicine. The problem with biopsy’s is that the amyloid deposits into the organ and the nerve. Showing it on the heart was easy, its compromised my left ventricle and put me into heart failure.
With the nerves its tricky because you can have a 6 inche nerve and the amyloid will only be in 4 inches of it, so depending in where you cut you can miss it by a sliver. That’s what happened with my dad, he had many biopsy’s and they couldn’t find anything, I want to say 6 later is when they finally got the amyloid. It’s been a long day. To see Brad’s face when I told him how the disease is progressing was heartbreaking, but to turn around an hour later and see how God moved was amazing. I pray that in the 3 samples amyloid can be seen, I pray the insurance says yes to the most aggressive medicine, I pray for more time. I said I wouldn’t pray for total healing, because I want to be in God’s will and He is still working on me with that, because thats what I would love. I am not ready for the decline road, I am not ready to leave my family. Tonight we rest, my chest is still hurting and I have to take it easy till these water pills help the fluid come off, tonight we praise God for moving mountains, and making a way when there seemed like no way. Thank you for all your prayers, I have amazing friends.
They loved my mask thank you Sabrina! I love Pooh bear!!
