Home hemo no mo'

last Friday I got a call there was a kidney that may have my name on it. I was called again Sat. a.m. and crossmatch was good but one kidney had a tumor which had to be biopsied. later they told me to come in.
I was transplanted Saturday and came home yesterday, Tuesday.
my staples hurt but otherwise I feel pretty good. I passed urine all along but it was pale. now lots of it and its very yellow.
I have lots of pills to take but not prednisone.
its kind of hard to adjust to not having to do dialysis but I’m sure I’ll get used to it pretty quick.
wish me luck and I wish all of you the best.

CONGRATULATIONS!! Can I be so nosy as to ask how long you were on the list?? I am almost at 3 years with no hint at all of being close!! Had one living donor but she didn’t “pass”.

Sounds as if everything went extremely well to be home 4 days after transplant!! Wonder if that is any kind of record??

Great news. Ditto to everything Cathy wrote! Keep us in the loop - keep us up to date on how you’re doing.

Spiderwoman, that is fantastic news! Now you have the opportunity to learn all kinds of new things about living with a transplant. Interesting that you’re not on prednisone. Different transplant programs follow different drug regimens. You’ll have to check in periodically to share how you’re doing.

Cathy, so far as waiting time for a transplant. I’m sure you know that the list is not first come, first served. When you get called depends on such things as your tissue typing, availability of donors in your area, length of time you’ve been on the waiting list, and the urgency of your need.

The thing that always upsets me is when I find out people believe they’re on the waiting list when they’re not. I assume your clinic is regularly drawing your blood and sending it to your organ procurement organization. If there’s any question about whether you are on the list, ask your doctor and/or clinic.

I’d suggest that you ask your doctor, clinic, or the transplant coordinator at the transplant center where you’d get your transplant how common your tissue typing is. As an alternative, you can look at the US Transplant Registry (www.ustransplant.org) for the data reports. You can look at a particular center’s outcomes or look at how your organ procurement organization is doing compared to the national average on procuring organs that are being used for transplant. If you look at national reports you can see the waitlist activity for kidneys at different transplant centers. All the data I saw is as of 6/30/04.

Finally, some people choose to be listed at more than one place in different geographic areas of the country in an effort to shorten their waiting time. The downside of doing this is that you have to be able to get to that center fast enough and it’s best if you have someone in the area you can stay with for the outpatient post-transplant period and follow up visits or it can greatly increase expenses. Also, you need to be sure that where you go is on your insurance plan if you have insurance other than Medicare.

thank you for your good wishes.
I recently (January) transferred my time (nearly 4 years) in NYC to St. Barnabas in NJ.
all day Friday each time the phone rang I thought it may be the hospital calling with a kidney and at around 8 it actually was.
the staples are painful and I am all swollen in that area but not red so I guess its ok.
I will keep involved with the group if you will still have me.

That is super news!
I pray you have many many many many years of urinating!
Keep smiling and keep us informed.
Pat

Wow, indeed that’s a miracle! SpiderWoman, hang in there!..your on your way to great freedom, wish you a great future ahead and take care! Give us a followup after a few months or so… :slight_smile:

I’m fairly new here, but that’s so great to hear. Congratulations. I wouldn’t mind giving up home hemo if they called me, that’s for sure!

I was called in and admitted as the backup recipient a little over a year ago, because the main recipient had a lot of antibodies. I spent all day from 9am to 5pm waiting in a hospital room by myself, but then they sent me home. I haven’t heard a peep since, and I was on hold for a month since then because of chest pains. It’s really nerve wracking to be on the waiting list. I’ve been on it for 2 and half years now - just an ordinary type A with few antibodies too. Next time they call me, I won’t get too excited until they are actually wheeling me down to surgery.

As you know, there’s a lot more to it than just seniority on the list. In addition to the things already mentioned, there’s also kidney size to consider. The donor kidney size has to roughly match up with yours.

Pierre

Hi Helen, I’m so happy for you and hope you can be out on the ocean soon. It couldn’t have happened to a more deserving person. Your ability to do your hemo by yourself and keep such a postive attitude has been an inspiration. Hope that incision heals quickly! Love, glo

Cathy, so far as waiting time for a transplant. I’m sure you know that the list is not first come, first served. When you get called depends on such things as your tissue typing, availability of donors in your area, length of time you’ve been on the waiting list, and the urgency of your need.

I’ve never heard of urgency of need with regard to kidneys since dialysis is an option. I am O+ so have the longest wait but do not have high antibodies.

The thing that always upsets me is when I find out people believe they’re on the waiting list when they’re not. I assume your clinic is regularly drawing your blood and sending it to your organ procurement organization. If there’s any question about whether you are on the list, ask your doctor and/or clinic.

Yes, although Kaiser recently started doing their own transplants and have moved me from UCSF to their list. Have no idea how they mete out the available kidneys so that all of the transplant units in the area get equal rights to the available kidneys. I was told it would be a 5 1/2 to 6 year wait when I first went on.

All the data I saw is as of 6/30/04.

This center didn’t open until 9/04 so no data is available there or at UNOS

Finally, some people choose to be listed at more than one place in different geographic areas of the country in an effort to shorten their waiting time. _________________

My insurance will not allow me to be on more than one list. There are 3 or 4 transplant centers within a couple of hours of me, but without insurance coverage it doesn’t make sense.