So, to answer the first question that I know EVERYBODY has: No, she is NOT on "The List."
To answer the other question I've heard a few times today, "WTH is going on?"
Last weeks' unexpected clotting catastrophe overrode my typical tendency to keep people in the loop. Today was scheduled ages ago: Met the surgical transplant team to see if she can be put on The Transplant Waiting List. It's part of the ongoing process that all potential transplant recipients MUST go through to be listed. Last week, she had all of her initial visits by phone: Dietician, transplant coordinator, financial counselor, social worker. That took the better part of a day, but we were, at least, at home for that.
Today? Start at 9 AM, meet ALL the people, get blood work and x-rays, and check off all the "missing information" boxes. We drove down last night to avoid utter exhaustion LOL.
First up was her regular medical transplant NP. She plays both teams, apparently, and we were fortunate enough to have someone familiar with the situation start us off.
We had, on the preliminary phone call, discussed Evusheld with her. This is an injection of a pair of anti-covid antibodies that lasts about 6 months to decrease risk of serious infection in high-risk patients. It was in very short supply initially, and you had to literally throw your name into a lottery to get it. You are also supposed to have epinephrine immediately available in case of allergic reaction. (I popped my EpiPens out of my purse and asked, "Will this do?" "Well, yes....") Supplies are better now, so her NP ran to the pharmacy and came back and gave her the injections. Repeat in 6 months unless there is a new strain of that covid crap.
She ordered all of the necessary weird blood work that Babygirl needs to clear the hurdles listed below (it was 24 tubes).
Step one Pass/Fail: Pass.
Next was the surgical transplant nephrologist. He was a very articulate man who was clearly fluent in both DocSpeak and PatientSpeak. He didn't condescend, but he has a gift of making complicated things simple. It is a VERY rare gift. He covered a lot of ground:
1) Babygirl is in the process of actively rejecting a transplanted kidney, and she's had multiple blood transfusions. This means that she has likely developed a LOT of antibodies against, well, nearly ALL other humans. This means she will be extremely difficult to match. Since the current average wait time is 5-6 years for a kidney, I didn't see this as good news, particularly. She might match only 1/1000 available kidneys, or 1/10,000.
Oddly, this can be good news. In the past 2-3 years the rules have changed for people like her. The UNOS system puts the EXTREMELY difficult-to-match people at the top of the list, so the very rare matching kidney goes straight to those people right away, from anywhere in the nation. This doesn't mean she'll match sooner (although it can), but that the one-in-a-million kidney won't go to someone who could safely wait a couple weeks more for a less accurate match. Blood work done today will assess how bad the antibody situation is, and where she fall on that scoring system. This is a separate score (degree of difficulty, if you will) from the overall (likelihood of longevity of both patient and donor kidney) "how close am I to getting a transplant" score.
2) Next, he discussed "high risk" kidneys. He immediately said he would refuse on her behalf any kidney from an older, sicker patient because he wants her to have a kidney with a better life expectancy. Basically, "Let the old people take the old kidneys." On the other hand, he made it plain to her that even a bad kidney is better for her long-term health and prognosis than dialysis (something she was blissfully unaware of until this point. Not gonna lie, I've kinda kept that to myself).
So if old kidneys are too risky, what is less risky, you say?
Drug overdose patients. The ugly, unfortunate truth is that more than a third of the current donors are young people who've made bad choices. Car and motorcycle victims with no known history of IV drug use are a "safer" choice, because needles can be contaminated with HIV, Hepatitis B, and C. She's been vaccinated (two full series) for Hepatitis B. The last known HIV-to-transplant-recipient transmission was well over 5 years ago nationally. Any potential donor who tests positive for HIV/HepB viruses does NOT donate, ever. However, if there is too little virus to detect, a week or so into the infection, transmission can still occur. Hepatitis C gets its own discussion in a minute. If she's willing to accept a high-risk donor, her odds of getting a match earlier is higher. She agreed, but can change her mind at any time.
3) Known Hepatitis C donors get their own category of risk. Aside from the rare patient where status cannot be determined (an infection less than 2 weeks old), Hep C is a known quantity. About 30% of available young, deceased donors actually have Hepatitis C (from needle use, prison tattoos). Until a very few years ago, this diagnosis ALSO excluded these donors. However, well over 99% of Hepatitis C cases can be completely cured by current medical treatments with minimal side effects. She was willing to sign on for this as well.
4) Apropos of nothing, he remarked that her inability to make blood is likely due to an erythropoietin (the hormone that she has been getting at dialysis, that your kidneys send to your bone marrow to make blood) resistance. This is apparently common during rejection episodes, so he's adding some blood tests to look at how much ongoing inflammation she has going on.
5) Both Babygirl and the donors get a score. She's young, fundamentally healthy (for a sick kid LOL), and will hopefully get a score of 20/100 or less. That moves her up the list. Donors get a score also, and the ideal would be to match a donor with a similarly good score with her.
Step two Pass/Fail? To be determined.
Finally, we met with the transplant surgeon. She wanted a CT of Babygirl's belly to outline anatomy. Lucky us! The ER did one in April, so they will get those films. She ordered an updated chest x-ray and EKG. Her echocardiogram from January is good. No additional doctors need to see her to clear her for surgery, but she does need a dermatology cancer screening and a PAP smear (scheduled, and scheduled).
Step three Pass/Fail? To be determined.
The entire team meets every Monday to decide which among the patients hoping to be listed actually qualify, and how they score. It might be 11 days before we hear anything.
We didn't leave the hospital until after 3. We drove to Seneca Falls to begin exploring the Women's History Museum (it closed a little more than an hour after we got there), and stopped for ice cream before hitting the road.
So that is WTH is going on.
DeeDee.
