I've got a date...

[paris]

This is exciting.      Keep us updated and take care.  We love your sister for doing this!   

[kellyt]

My donor was a 3/6 match, as well.  I'm doing great!   I'm so excited for you!  Is this your first transplant or second?

[Sunny]

Hope all is going well. Hopefully we'll hear from you soon.

[Wattle]

3/6 is pretty good. I think it is a 25% chance of matching a sibling. The better the match the lower the drugs ... usually.


   I will be cheering you and your sister on from down here. PKD sucks.   

[openboat]

Just a short update, I'll post more when I'm home.  My sister went in at 0700 on March 31, the bone marrow aspiration happened first and took a couple of hours.  Her kidney was out by 1200, and I went in around 1230.  I awoke around 1830 in PACU, my O2 sat was in the low to mid 80's at first so I didn't get to my room until around 2030.

The graft went right to work, it's peeing like a fire hydrant and my creatinine is already down to 2.9.  Surgeons and staff at Emory have been amazing.  I'm feeling great, have been up and walking the floor several times.  My sister was worse off than I was until this evening, she's looking and feeling much better now.

I may be able to go home Friday, though they will leave the central line in my neck since it will be used for the bone marrow infusion on April 7. 

Many thanks to all for the thoughts and prayers.   

[pelagia]

  congratulations!

[okarol]

Wow I didn't know you were getting bone marrow too - it will be amazing to see how this all works out. That's pretty tough on the donor - please give your sister a great big hug from me!! I hope each day is better and you both have a very speedy recovery!

[kellyt]

Yea! It's over and you have a new lease on life!  I hope everything goes great in your recovery, as well as your sister's.  I'm so happy for you.  I was in the hospital for 7 days and although it was extremely boring, I was well taken care of.  Going home can be a little stressful when you're not getting your lab results every day.

Congratulations on your transplant!   

[Wattle]

    Congratulations. I am happy it went so well.

I am sure your sister feels blessed to be able to do this for you. Having dodged the PKD bullet would make her even more willing to help. She is wonderful.   

[pelagia]

I should have mentioned this in my earlier message too -  Thinking about the generosity of a living donor still stops me in my tracks.  It makes me feel very humble.   Please tell your sister thank you for all of us who have been touched by the realities of kidney disease and then had their lives changed by a donor.

[willieandwinnie]

  openboat.  Take it slow and drink plenty. Give that sister the biggest  she can handle. What an angel. 

[paul.karen]

 

Great news.
May you both recover fast with no complications.

Will they be leaving your PKD kidneys in or take them out at a later date?

[openboat]

I'm home and feeling great - they released me yesterday, just three days after the surgery.  Everything has gone as perfectly as I could have hoped.  I have some pain from the incision, but it's healing quickly and even the day after the operation I was feeling better than I had in years.  Any nagging doubts I had about whether it was the right time to do this are gone.  The last creatinine number I saw was 1.6, it's probably a bit lower now but I'll find out for sure at my labs on Tuesday.

My sister is doing great, too.  The surgery is harder on the donor than the recipient, mostly due to having to move the spleen and colon out of the way.  She also had the bone marrow aspiration to go through first.  She was hurting more than me for a couple of days but she's up and walking around now, dad even drove her over to my house for a visit today.

My native kidneys are still in place, no plans to remove them yet but if they start acting up more I will look into that.  I still have a central line sticking out of my neck.  I have plenty of RN's in the family to flush it daily and leaving it in means that I don't have to get a new one installed for the bone marrow infusion Tuesday.

The study drugs have gone smoothly so far.  My Rapamune dose is still adjusting, no side effects yet but I expect to have wild cholesterol and triglyceride numbers for a while.  The Belatacept infusions have been easy, just an infusion over 30 minutes.  I'll have a biopsy at six months then again at a year, if both are clean then I'll be weaned off of the Rapamune entirely.  If that goes well then we'll decide whether or not to wean off of the Belatacept, too. 

Thanks again for all the thoughts and prayers.  I'm going to take it easy for a few weeks, but I'll let you know what happens, especially with the study.

[okarol]

  openboat! Great news!
So the goal is to eventually have you off anti-rejection meds eventually? That's incredible!
Good luck - hugs to your sister too!

[openboat]

That's the plan.  There are no guarantees, but if everything keeps going this well then I'll be off immunosupressives entirely after about 18 months.

[Wattle]

    I hope it all goes to plan. I will be following your progress.