Were you on dialysis before your transplant?
Did you have a live or deceased donor, if live how did you know them?
I had two living donors, and one deceased. My uncle donated his liver, my cousin donated a kidney. Deceased donor was from different state.
When and where did your surgery take place?
Double live donor liver kidney transplants in 2005, Lahey Clinic, Burlington MA. Deceased donor Kidney transplant in 2016, University transplant hospital San Antonio TX
How long did your surgery take from start to finish?
Double organ transplant took 12 hours. Deceased Kidney transplant took 6 hours
How was your pain before and after the surgery?
I wasn’t in much pain before either transplant, but very weak and very tired. Couldn’t eat much and was on constant antibiotics for peritoneal infections. I tend to lose weight rather than gain (even with water retention).
How many days did you spend in the hospital?
Liver kidney transplant recovery was 15 days in the hospital. Deceased donor kidney transplant recovery was 6 days in hospital.
Explain your post transplant clinic visits. How often and for how long did you see the clinic?
I saw the clinic weekly for three months after my liver kidney transplant. Labs, weight, and looking at incision to make sure there wasn’t infection. It slowed down to monthly at my third month for the first year, then every six months until my 5 year mark. Now annually.
How old were you when you had your first surgery?
How long did or has your kidney transplant lasted?
Living donor Kidney lasted 13 years, deceased donor kidney is going on 3+
How many transplants have you had?
What meds are you on post transplant?
I am on tacrolimus and mycophenolate. I was on some antiviral and antibiotics for three weeks after surgery each time. Prednisone was higher doses for a month or two after surgery, then dropped down to low management dose. I was able to stop blood pressure meds (amlodipine) since Kidney was now removing extra fluid.
Compare your post transplant diet vs. your pre-transplant diet.
Pre transplant I was limited from high protein and sodium. Now I eat steak and even snack on French fries when the mood strikes me. I’m more careful about eating leftovers as I find I get food poisoning much easier post transplant, but am able to easily find a tasty healthy meal even in our local cafe!
How soon after, if at all, did you begin drinking alcohol?
I do not drink alcohol due to the liver transplant and the medications recommend not to while taking them.
How soon after, if at all, did you begin smoking and/or using marijuana or CBD?
I don’t use either.
How soon after did you begin having sexual intercourse?
Lol. The week I came back from surgery. We were very careful. I was back to normal about 3 months out. It took some getting used to as the nerves had been severed in my groin so things felt different.
If applicable, how soon after did you get pregnant?
It was recommended I do not have children.
After transplant, have you ever had a rejection? If so, what happened?
I had rejection twice. Both times it affected my kidney, not the liver. I felt like I had a cold, but no sinus symptoms. 2007 I had a fever and was achey. I was admitted to the hospital ICU and given immunoglobulin and high steroid doses. Second case of rejection in 2016 I was again admitted but this time I had plasmapheresis and given albumin to try to replace my antibodies with healthy ones.
How long after transplant until you returned to working.
Six months after liver kidney transplant, two months after Kidney transplant I was allowed back on light duty.
How long after transplant until you began exercising?
I was walking immediately. Began running after 3 months. Ran a half marathon by one year anniversary of kidney transplant.
How often do you get your blood work done, 3 months post, 6 months post, 1 year+ post transplant?
Monthly for the first year, then every three months, then every six.
What kind of setbacks or hiccups have you had shortly after transplant?
Infections. UTI mostly. Given antibiotics and they e resolved quickly. Also struggled with anemia. I’ve been given blood transfusions and Procrit injections to increase RBC count.
Final words of wisdom:
Remember that caregivers have a rough time watching you be sick as well. Plan for times when they can have a break (even if it’s a spouse), so your support doesn’t get burnt out.