Today was a wonderful day of rest.
I’m back home now and in a holding pattern with dialysis three days a week, blood transfusions as needed, and an infusion of a new kidney treatment every Friday. The kidney biopsy I had las week showed some unexpected results- Thrombotic Microangiopathy is the condition causing my kidneys to fail. It’s a rare disease that unrolls a pattern of clotting problems in the small blood vessels and ends up damaging and killing off parts of the kidney for lack of blood flow (oversimplified… you get the idea). This diagnosis was surprising, and I’m very thankful I went through with that kidney biopsy… even though it made me really nervous… it’s not a diagnosis they would have guessed. And this leads me to thank all of you American taxpayers out there. THANK YOU. My health insurance is paid for by your hard earned cash, and the cost for my kidney medicine is… well… high. In fact it’s one of the most expensive drugs in the world! It’s called Soliris or eculizumab (the cost is over $700,000 for the first year, or between $7,000-27,000 per dose depending on how much you need).
How’s life at home?
- We still have our wonderful family rotating through helping with kids, and chores, and cooking, and driving… I love them so much. My body is super weak. My mind is running on low. My eye is slowly recovering, but still can’t see all the way. I take forever to get cleaned up in the morning (I measure urine output, temperature, weight, blood pressure, and I can’t shower or bathe with my dialysis femoral catheter, so I have to carefully sponge bathe all around.)
- My diet has become a big challenge, but thanks to my mom, it’s getting mastered. I desperately need to gain weight, but on under 2000 mg sodium per day, low phosphorus, low potassium, and keeping the nausea down. Getting enough calories this way is NOT fun. My wonderful mother has made salt free bread for me, salt free breakfast sausage, sauces, dip and -most impressively- has been tracking everything I eat to make sure the goals are met and I have a record that can then be repeated more easily moving forward. She’s a keeper.
- My small talk has been severely affected… Today I went on an outing to Walgreens. I wore one of those keep-the-germs-away masks. At checkout the cashier kindly asked “How are you doing? You’re looking like you’re coming down with something with that mask on.” Me: “Well, thankfully I don’t have anything contagious… just trying to keep everyone else’s germs out.” Then she said: “Oh! That’s a good idea- glad you’re not sick!” Then I felt like I was deceiving her, so I filled her in: “Well, I do have cancer…” “Oh, so sorry to hear it- what type?” “A kind of nasty blood cancer called MDS.” Her: “Oh wow. How did you know you had it?” Me: “Severe anemia” Her: “Well my sister’s got anemia and can’t seem to shake it- I sure hope she doesn’t have cancer” Me: “Don’t worry, they’d be able to tell if its MDS… once they saw the shape of my red blood cells they knew to look at my marrow and it was a straight shot diagnosis.” Her: “Well that’s good to know! All the best to you now! Thanks!” Can’t I keep it light anymore??? Oh well.