Things with Lav have been stable this month. Not any worse lately, but not any better. it’s been eerie for us, because she hasn’t had any appointments all month, and that hasn’t happened for almost 2 years.<\/p>\n
<\/p>\n
We got the results of her genetic testing, and she doesn’t have any known genetic immune conditions underlying all her issues. Clearly, she has an underlying autoimmune problem, but it’s not one that they have identified and can treat as an immune condition, if that makes sense. At the very least, this means that there isn’t anything preventing her from getting her transplant from an immunology standpoint, so that’s good.<\/p>\n
<\/p>\n
She did get approved for a few “exception points” toward her MELD score, bringing her score to 16. Transplant usually occurs around 30. This is about what we expected – she will have to inch her way up the list, because her liver function has remained ok-ish, while the other complications of liver disease are what are primarily impacting her health.<\/p>\n
<\/p>\n
We are very much in a holding pattern of “hurry up and wait” right now. It’s a little anxiety inducing, but we are powering through.<\/p>\n
<\/p>\n
For good news: Lavender turns 16 in about a month! That’s always a big milestone, and we are looking forward to celebrating her. Keep an eye out for an online party\/fundraising event coming up in mid-May. A few weeks ago, she was telling me that she was trying to think of what to ask for for her birthday, but was having a hard time because “all I really want is a liver.” If you think you might be willing to be a living donor, please look into it! You can find information and a link to a health questionnaire for liver donors here: https:\/\/www.ucsfhealth.org\/lp\/living-organ-donors<\/a><\/p>\n <\/p>\n As always, thank you for your love and support as we navigate this! We appreciate you!<\/p>\n","protected":false},"excerpt":{"rendered":" Things with Lav have been stable this month. Not any worse lately, but not any better. it’s been eerie for us, because she hasn’t had any appointments all month, and that hasn’t happened for almost 2 years. We got the results of her genetic testing, and she doesn’t have any known genetic immune conditions underlying all […]<\/p>\n","protected":false},"author":0,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-8","post","type-post","status-publish","format-standard","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/cota.org\/cotaforlavender\/wp-json\/wp\/v2\/posts\/8","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cota.org\/cotaforlavender\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cota.org\/cotaforlavender\/wp-json\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforlavender\/wp-json\/wp\/v2\/comments?post=8"}],"version-history":[{"count":0,"href":"https:\/\/cota.org\/cotaforlavender\/wp-json\/wp\/v2\/posts\/8\/revisions"}],"wp:attachment":[{"href":"https:\/\/cota.org\/cotaforlavender\/wp-json\/wp\/v2\/media?parent=8"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}