I met with the neurologist today, and looks like we will be heading down to Charleston again soon for a nerve study so we have a base line of the neuropathy. FAP is what I am diagnosed with Familia Amyloidosis Polyneuropathy. She wants to send her notes to Dr. Judge so they both can come up with what treatment is the best option. There are two one is a weekly injection and with that it requires weekly blood test, and urine test 2 times a month for the rest of my life. I have factor 5 so this may not be an option because of that because it does something with your platelets.The second is the infusion every 3 weeks, and with that I need to make sure my thyroid and my vitamin A are being monitored. She was hopefully that we could find a infusion center up here, but how she explained it to me was the infusion center has to participate in that medicine. Because it is extremely expensive, (close to 200k a year) some infusion centers lose money by doing it. She said Palmetto infusion does it down there, and we have one in Rock hill so hoping if thats the route we take I can go there. So somehow I was under the impression that when starting treatment, that things would reverse because thats how medicine does it makes you better, but no. The damage that is done by Amyloid is done, and there is no reversing it. The medicine will slow down the progression of it going forward, so I am not in a wheelchair in a year. I am also diabetic which adds another level of complications, I am seeing a nutritionist on Thursday because she wants me low carb, not keto she was very strict about no keto but low carb for a few reasons. My body doesnt do well with carbs, carbs cause inflammation and swelling which makes the Amyloidosis angry and more aggressive. Before the infusion I need steroids and Benadryl and steroids and diabetics are not friends. Sugars will soar but with low carbs they should be low enough that there is no great spike every 3 weeks.I see Dr. Judge on the 30th and should know more then too as they are working together because medically ( I say medically because God has the final say) it will hit my heart.
I keep seeing my dad’s walk it just keeps flashing in my mind. How he lost everything, driving, walking, and to know that the damage is done is a lot to take in today. You never know how much life you want to do till all of a sudden it gets restricted. I have no idea the cost of each infusion but we are looking at every 3 weeks for the rest of my life, to do that to my family just brings me to tears. I know Brad would never utter a word, never complain because thats who he is, but my heart hurts for what this is going to do, the limits, the walk, and what they will endure. The life expectancy is 10 years after symptoms start, I know a God that doesnt go by science and isnt limited, but my mind goes to what if that is His plan, how much life of my boys will I miss….
Today my heart is overwhelmed today I cant stop the tears from falling, today my heart is breaking in a million pierces not for me, but for my family, for my friends who don’t have words, and this journey is too much for them to walk with me. Today I am broken, but I also know God is with me, He is crying with me, and His heart breaks too….
So for now we meet with the nutritionist Thursday and Dr. Judge the 30th, waiting to hear when the nerve study will be in Charleston. Brad already joked when I told him said him and the boys have wanted to go back to the walmart in Charleston, lol.
Thank you for walking this journey with me. Prayers for my mind, I can handle the body but the mind is a dangerous place…..