That I never told you.

Horrible news from dialysis today.

My kidneys are only functioning at 1%. Nothing I am doing is improving this.

I will have to continue extensive dialysis when the 90 days of AKI are over and I will need to be put on a transplant list.

They want me to get a fistula because it’s safer and I don’t want to disfigure my arm and I don’t want to be stabbed multiple times every other day.

I also don’t want to have my life be tied to a fucking dialysis center for the rest of my life either. No vacations, no staying in other places without arranging a new dialysis center, no eating out, no eating other meals everyone else is eating.

I went from being a perfectly healthy person to immediately being on the brink of death needing around the clock care, to having the quality of life of an 80 year old disabled patient.

I genuinely want to die sometimes because I don’t want to live like this.

Our new house appraised for 1k over the selling price so the loan people offered to throw in another 1k of seller contributions to the closing costs if we change the sale price on the contracts to the appraised price. So that’s nice because I had to pull 11k from my retirement for this down payment and we are already eating into it because I’m on maternity leave and not getting paid

(Rent, and the 1250 to the builders to put in blinds and the garage door opener. Why these didn’t come with the brand new house I will never know) but hey I’m new here so

Health updates:

My eyesight is almost 100% normal again which is a blessing. My blood pressure is still not under control and the very last 5 minutes of dialysis when they’re giving me the blood back and make me stand, my pressure has been tanking to like 115/45 and I am fighting fainting and then I have to sit and do oxygen and drink water and yadda yadda so idk what’s up with that but it’s not great

My kidneys are about the same. Some weeks the creatinine and BUN go up a little and some weeks they go down a little. I believe we are having VERY small improvement but nothing noteworthy yet. It is looking like I will be headed for the transplant list shortly. :/ and dialysis for the foreseeable future.

I am severely anemic and have had some very crazy muscle soreness so we need to check my magnesium. Walking up the 8 stairs to my house is hard. Carrying the baby more than 30 feet is hard. Walking up an incline is like an entire cardio workout. If I stand up too fast my hearing goes out all muffled and I have to sit immediately. It’s all dumb and I don’t even know what to try to fix because it’s all related to kidney bullshit.

My next chemo treatment is in a week so hopefully we see some improvement after that because apparently it’s supposed to make many things feel better but I had two and didn’t super feel a difference so, idk.

Work updates:

My boss has asked me every day for like two weeks when I’m coming back even tho the teams messages make it look like they’re doing perfectly fine without me. I could definitely extend my leave for another 4 weeks but I really really need the full paychecks right now, so I am on track to return 7/17. I work remotely so I am not super worried, but I will need to be very communicative about my abilities during and immediately after dialysis Tuesdays/Thursdays.

What I AM worried about is childcare. We need a nanny. Husband is still on paternity leave, but the baby is a contact baby and we would definitely need help. I paid for a care.com thing and all the background checks and like 50 people have applied but I am so overwhelmed I don’t even know where to begin. Even if we do the lowest rate of like $20 an hour, on the three days a week my husband is working in the office, that’s still 8x20 =160 and 160x3=480 per week…..like bro. I don’t know anyone here to do a nanny share and I def can’t afford to put my 2 month old in daycare. But I can’t take him with me to dialysis for 3.5 hours every other day.

Thoughts anyone??? Seriously. Help.

Moving updates:

Mira a mi preciosoooooo 🩵🩵

This is my only baby

And I literally had dialysis yesterday and am on a fluid restriction and I have no idea how my body is still producing milk

It is a full time job keeping this catheter dry while bathing

I can’t even submerge myself or take showers. I hate this man. But I still don’t want a fistula lol

Happy Saturday