Yesterday was my annual transplant program check-in. Here are some highlights for those who may be curious what that entails.
First up, unfortunately, is the weight and height check. This is one of the two the most dreaded moments for me. I wore the lightest clothes I could find. I've threatened to go commando, but I didn't. Every ounce counts. Especially, when you were kept off the transplant list until you reached a magic number, not based in science. At 224 I was in the same morbidly obese category as someone who weighed 1200 pounds. Somehow I lost an inch in height. I don't think I actually did, but that's what they put on my chart. I guess I should have stretched first! I was under their magic bar of 200 though. I was 181 at home and 186 at the hospital.
Next was the usual re-telling them every bit of demographic information over again. My assigned transplant coordinator was busy with her previous appointment, so I had a sub this time. Even though I had to do an electronic check in - 5 times for the 5 different appointments. My name, address, birthdate, employer, insurance and all of that minutia hasn't changed in the past year. The constant repeated questions is very annoying to me, but I smile and answer to prove "compliance."
Next was the hospital social worker and more duplicate questions. What insurance do I have, do I have paid leave and disability insurance, who are my caregivers who can drive me to the many appointments- pre and post transplant. No changes there either. Then comes my third most dreaded moment - the depression and anxiety assessment forms. I refuse to lie on these forms. As a result I have to explain, that while I have no suicide plan, and am not suicidal, I do have frequent thoughts of being better off dead. I point out that MANY people have chosen death over living with an ileostomy. I point out that my multiple, serious health conditions leave me tired, the MJ reduces my appetite, and more. I remind them I have a very stressful job and that we are in the middle of the most stressful and complex work ever. I work in Medicaid and CHIP compliance for my state. After years of the PHE continuous coverage requirements and the daily changes with the unwinding, we will have record breaking audit errors due to the continuous policy and procedure changes. I made it through the quizzes and explanations. I am grateful for my previous therapist who spent a hour on the phone with the social worker 3 years ago explaining that health related depression was normal and that I was not a risk for suicide or non-compliance with transplant requirements. The program is really big on "compliance" and not wasting kidneys on people who won't take care of them.
Next was the pharmacist. I had to bring all my bottles in a tote bag. Even though I updated my med list online - 5 times - to check in before the appointments. Even though I have a list of my meds and doses. Even though I know my meds. She has to compare the bottles to what's in the chart. Then she goes through the post transplant medication, what each pill is, what they do, how they will change. This is the forth time I've had this presentation. I've been taking daily meds since I was a teen. I know what all my meds are for and what they do. But I nod and smile and explain how I load my pill box and take my current medications.
The nephrologist is next. It's a new one. I think they like to rotate what team nephrologist you see so they can all meet the folks on the list. Gratefully, this one had actually read my chart before coming in the room and knew and believed my CKD was from ileostomy dehydration. It was the first time I didn't have to play, "educate the doctor." I usually have to explain the difference between an ileostomy and a colostomy and more. We discussed the pros and cons of me going inactive on the list. Since starting Mounjaro 8 months ago my eGFR has been creeping higher. It's impossible to know if the MJ is helping the kidney function or if the ~30 pound weight loss is the reason.
A research intern popped in next. She's helping a Dr. who is doing a study on web based communication and education materials about choosing to accept a kidney. Sometimes you get offered a high risk kidney. They are creating a website to share information about Kidney Donor Profile Index (KDPI) stuff in an understandable way. I said, sure, I'd be happy to be in a focus group and review proposed language.
Finally, my transplant coordinator, nurse Patty, was free. We talked about me going inactive since with a eGFR of 30 I don't need a donated kidney to live - today. If I go inactive I will continue to accrue time on the list, I don't have to give quarterly bloods for matching, and I don't need an annual heart stress test. My case will go up to the committee for discussion in two weeks and she'll get back to me.
My final appointment of the day is the most dreaded, most horrible of them all. I hate the dietician and I'm sure she feels the same about me. She was trained in old school, calories in, calories out theories. She doesn't understand the carbohydrate-insulin model. She also uses the same calorie charts she was given in school. So, she constantly tells me to eat more food, 2000 calories a day, and lose more weight. If I ate the calories she suggests I would have been 300 by now, not 182. She assumes I am lying about what I eat, like most fat phobic people assume, that fat people must sit all day eating bon bons and chocolate. She assumes I'm lying about exercise, because if I really went to the Y five nights a week for 2-4 hours I should be skinny like her. Since she exercises less than I do and is skinny I must be lying. She wants me to drink high calorie ensure products since I'm nutritional malnourished. Which is true, because I can't take any multivitamins (they are all encoated and come out my bag whole) and I can't tolerate veggies, I am a fat, yet malnourished person. The calories in the chewy vitamins are too high and are bad for teeth.
Anyway, since I'm requesting to go inactive, the dietician suggested to nurse Patty that we just skip my appointment. My husband almost laughed aloud when I quickly said "sure." All my anxiety, fear and anger over how she treats me disappeared instantly! By then it was 2:30 so we headed to an overpriced, but very yummy restaurant in downtown Minneapolis, just a few blocks from the hospital. As usual I only ate half my sandwich and may be 10% of my chips.
I was able to get on the transplant list because my eGFR had gotten as low as 7. NO ONE thought it would be at 30 three years later. My fistula is over 2 years old and has never been tapped. When the time is right to go active again, it will take a few months. I'll have to have another day long check-in like yesterday and a heart stress test and a committee review. I already keep all my other tests up to date, dentist, pap, mammogram and more. In the meantime I'll be still accumulating time on the list. Hopefully I'll be at the top when the time comes for a kidney. Avoiding dialysis would be a big WIN, I'll be able to keep working, keeping my income and insurance.
Every transplant program does things differently. I'd be interested to hear how other folks have to check in while on the list.
Barbara
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