A year and four months out... - Kidney Transplant...

Kidney Transplant Patient Support

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A year and four months out...

10 Replies

Was your transplant from a living donor or a cadaver? I remember getting a call from the Emory Transplant Center at about one o'clock in the morning telling me they had a matching kidney and to get there within four hours.

This is my second kidney transplant, the first was from my mother.

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RUKIDNEYME profile image
RUKIDNEYME

How do you like Emory? My first transplant was in MUSC now my second one is going to be at Emory. Are you on the new drug Belacept?

in reply to RUKIDNEYME

I was first listed at MUSC while I was at school in Greenville attending Bob Jones University. I was placed on non-active status until I graduated then I had my accumulated waitlist time transferred to Emory since I live in GA. I didn't want to be listed in multiple states.

I really enjoy Emory. The staff there are always ready to help and be flexible if I need to change an appointment date . I had my first transplant at Egleston, the Emory children's hospital. I haven't had real complaints about anything. But after 15 years on dialysis, 3 on HD and 12 on PD, I have learned to be very patient with doctors, nurses, and healthcare workers in general.

I guess some might call this a complaint, but I never voiced it to anyone at Emory: when I had a pre-op meeting with the counselor he was talking about coming in after a few weeks to have the J-stint removed through my urethra. He said huge, tough guys usually cringe at the idea. I left that discussion thinking that the doctor wouldn't numb me and it would be like when they put in a catheter, I would just have to take it. When the day came they used enough lidocaine on me to numb me to the bone. I didn't feel a thing other than them putting it in through the tip of the urethra. I don't know if the counselor was joking, trolling, or using reverse psychology to make me think it would be worse than it actually was. It didn't bother me that much because I had been through worse and catheterized many times but for someone else it could have given them a lot of anxiety.

And the "not so funny story" about the doctor bringing me the wrong biopsy results. I attribute that to inexperience and say "no harm no foul." My experience with Emory has been 4.75 stars out of 5.

in reply to RUKIDNEYME

I am on Bela. I like it. It is more convenient to have it just once a month than taking so many pills a day. I remember the liquid cyclosporine as a kid mixed in chocolate milk, that stuff was like toxic waste.

The only issue I had with it at first was driving all the way to the transplant center to get the infusion every month. After a year they allowed me to transfer to a local infusion center.

I have not had any noticeable side effects. I know that my immune system is suppressed so I take precautions like avoiding sick people and I keep hand sanitizer in my pocket for when I'm out in public.

RUKIDNEYME profile image
RUKIDNEYME in reply to

Bob Jones is a excellent school I live about 5 mins from that University, I am glad to hear the Belacept is working out for you. If you are not aware of this but Belacept is on back order and I only wish I could be on that drug right now. I feel your pain about the dialysis. I am glad to hear you like Emory it makes me very optimistic about my upcoming experience with this university.

TamekaS profile image
TamekaS

I went through Mayo...first time they called said had a match, I drove 6 hours, waited 8 hours and they decided sorry not a perfect match, drove back home 6 hours, they called a year , said they had a match, drove 6 hours 2 hours later said it was a perfect match, 7 hours later I was in surgery, but that was.only cause I ate before I got there so I had to wait🤷...anyway I will be 6 months post June 2nd, yaay me

in reply to TamekaS

I'm glad you are six months out. I hope everything is coming along on schedule with no set backs.

I'm sorry to hear about the problem with the first potential match, and you had to go on a "dummy mission." (Old habit to call it that when you go somewhere expecting something but come back empty handed.)

I never had any issues with "false alarms" on potential matches. They had to be extra cautious with finding a match for me because I already had one transplant in my life. So my body had developed antibodies. The match had to be nearly perfect before they would even consider it for me.

TamekaS profile image
TamekaS in reply to

Thanks 😀...but that's how this transplant went. My antibodies were crazy. I did ivig treatments to try and fix it, but it didn't do anything. With the first transplant,. pregnancies, and the multiple blood transfusions. They told me it would be impossible, it took 8 years. So i pray nothing goes wrong here. Wish u all the best.

toeragthecat21 profile image
toeragthecat21

hi chris..i had kidney transplant 20 months ago a cadaver .which most people avoid..but mine has done very well working at over 100 percent.so living donor is not allways the best working...genetics has a role.if it likes you it will be ok.. hope this helps regards chris

Damigi28 profile image
Damigi28

Hi Chris. I hope you are not getting wrong information , but no one’s kidney ever works at 100%, let alone over 100%. I hope your doctors aren’t giving you that info. Best wishes .

in reply to Damigi28

Damigi28

Not sure what you are referring to. Wrong information about what?

I just asked people's experiences to start a conversation.

If another recipient/patient says something that is not a hundred percent accurate I overlook it unless it is "dangerous" or "life/health threatening" because some recipients/patients have been around long enough to know better. I don't feel it is necessary to correct minor mistakes.

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