Were you on dialysis before your transplant?
No, I had a preemptive transplant.
Did you have a live or deceased donor, if live how did you know them?
Living. My cousin.
When and where did your surgery take place?
July 23, 2018. Swedish Hospital, Seattle.
How long did your surgery take from start to finish?
6 hours or so
How was your pain before and after the surgery?
Before I was fine. No real symptoms, no cysts bursting, no kidney pain. Just really tired. After it was painful. I relied on pain meds for about 2 months then Tylenol. My first ever surgery so nothing to compare it to.
How many days did you spend in the hospital?
Explain your post transplant clinic visits. How often and for how long did you see the clinic?
3/x week for 3 months
2/x week for 2 months
Had a setback with med side effects so had a visit with a colon doc and a lot of labs for about two months
Now monthly with my initial nephrology team
How old were you when you had your first surgery?
How long did or has your kidney transplant lasted?
8 months so far
How many transplants have you had?
What meds are you on post transplant?
Tacro, Imuran, Prednisone(low dose), Vitamin D, Cholesterol med, anti depressant, Fiber pill, occasional Xanax for sleep. Tylenol.
Compare your post transplant diet vs. your pre-transplant diet.
Eat a lot less big meals and mostly graze all day. Low salt before and after. Not a fan of meat so low protein. I eat eggs, yogurt, pasta, nut butters, salads, candy, pizza, cheese, fish, etc.
How soon after, if at all, did you begin drinking alcohol?
7 months. Had a couple drinks on vacation and lots of water.
How soon after, if at all, did you begin smoking and/or using marijuana or CBD?
I tried CBD for sleep but it didn’t help me. No smoking or pot at all. My docs are okay with edibles but I haven’t tried that.
How soon after did you begin having sexual intercourse?
Still waiting…..have other female stuff to fix now…
If applicable, how soon after did you get pregnant?
After transplant, have you ever had a rejection? If so, what happened?
How long after transplant until you returned to working.
4 months at PT, then a month of 32 hour weeks then back to FT in April 2019
How long after transplant until you began exercising?
Walking always, just last weekend did some yard work. I was exhausted. I still have pain near incision so taking that slowly.
How often do you get your blood work done, 3 months post, 6 months post, 1 year+ post transplant?
What kind of setbacks or hiccups have you had shortly after transplant?
It hurt like hell to get the stent removed. I apparently have scar tissue in my urethra. I had terrible side effects from the initial antibiotics they had me on….lots of diarrhea so had to mange that with Imodium however it caused hemroids and a anal fissure which hurt more than the kidney surgery. Had to use creams, sits baths, up fiber, etc but it was two months of intense pain when defecating.
Were are you from?
Renton, Wa. Outside of Seattle
Of what ethnicity are you?
White or Caucasian
Final words of wisdom:
You can do this. It’s hard but worth it. As my neph said yesterday all of the side effects while they suck aren’t as bad or difficult as those who are on dialysis face. I feel fortunate to have skipped that step. If trying for a living donor you have to put yourself out there and let people know. Patience, as this is a marathon, not a sprint. Lots and lots of tests and bloodwork, just roll with it. Learn to read your important numbers and understand them. Own your health. Don’t panic over every little thing. It’s a new normal. This disease builds resilience.