I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: openboat on March 10, 2009, 08:33:52 PM
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If all goes according to plan I'll have one more kidney on March 31. :2thumbsup;
Since I last posted my kidney function has been declining rapidly - at one point my creatinine went from 4.6 to 5.0 in three weeks, and it keeps rising. Docs say it's time to start D or get a Tx before I get any more symptoms. So far it's just been nausea, fuzzy-headedness, elevated K and phosphate and very low energy levels. I feel like I could wait longer, but I've decided to be a wimp about it and not experience anything worse. ;D
The living donor is my amazing (and PKD-free) sister. She's a pediatric ICU nurse, so she's very familiar with the procedures, and she's still willing to give one up!
Does anyone have last-minute suggestions for things to take to the hospital, other than the usual toothbrush, loose-fitting clothes, etc.?
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Tell your sister I said she ROCKS! :bow;
We were in and out of the hospital in 3 days, so there wasn't enough time to do anything.
Afterward Jenna did enjoy having DVD's to watch. We also went out to the movies (she wore a face mask, and the theater was mostly empty anyway, midweek.)
All the best to you! :cuddle;
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:clap; :clap;
Good Luck Openboat.
Give your sister a hug. Both my sister and I ended up with PKD and we have always said it would have been so much easier if one was able to donate.
And don't think of yourself as wimping out. Dialysis sucks.... I would have done anything to avoid it. Take the transplant before your body is affected by your toxic blood stream! :cuddle;
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Wishing you and your sister all the best. As for things to take, any chance of taking a laptop so you can let us know how it goes? ;)
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Good Luck there.
Well all I can think of to bring is your hairbrush, soap, new toothbrush, your own toothpaste because what the hospital gives is, well crap. Bring some extra loose fitting sweat pants and maybe socks I'm thinking.
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Throw the old milk out before you leave for the hospital!
P.S. this is great! news and this :cuddle; is for your angelic sister.
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You are one lucky brother. Maybe arrange to have flowers delivered to her room if the hospital allows them. Some places don't. Or maybe silk flowers or balloons that say "Thank You". I'm sorry, but guys usually don't think of these things.
:yahoo;
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:grouphug;
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Congratulations openboat! :2thumbsup;
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:grouphug; Best Wishes!
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:clap; :yahoo; Keep us posted. :cuddle;
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Great news openboat. And so good of your sister :clap;
Now this and dont get upset just something to think about as i have.
Does your sister have kids?
Does she plan to have kids. If no then no worries.
But if she has or plans on having kids they could get the dreaded PKD disease.
I told my brothers not to even get evaluated as donors for me due to the fact they have kids or may in the future. and i would feel very bad and selfish if one of there kids did end up with PKD. And i had there parents kidney in me. When it could have maybe been used for there own child.
I am not in any way trying to bring you down openboat. Please dont think i am. But it can be good to look at the long run for everyone.
And sorry if i bummed you out not my intention.
With that said i do wish you and your sister the BEST.
P&K
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I always take my own pillows to the hospital, a memory foam one (from Ikea) for my head, and a small buckwheat one that I use to support my side. I don't like the hospital pillows because they're covered in plastic and don't smoosh down comfortably.
I also like an electric toothbrush (I use an Oral B) because you get a consistent 3 minute brushing and when I'm not feeling my best it's too easy to cut corners. Post transplant, dental hygiene is crucial.
All the best with the transplant and your sister is wonderful to step up like this for you. Very nice indded.
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Wishing you all the best, My caring thoughts and prayers are with you. Keep us updated, of course! :grouphug;
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Great news openboat. And so good of your sister :clap;
Now this and dont get upset just something to think about as i have.
Does your sister have kids?
Does she plan to have kids. If no then no worries.
But if she has or plans on having kids they could get the dreaded PKD disease.
I told my brothers not to even get evaluated as donors for me due to the fact they have kids or may in the future. and i would feel very bad and selfish if one of there kids did end up with PKD. And i had there parents kidney in me. When it could have maybe been used for there own child.
I am not in any way trying to bring you down openboat. Please dont think i am. But it can be good to look at the long run for everyone.
And sorry if i bummed you out not my intention.
With that said i do wish you and your sister the BEST.
P&K
I understand where you're coming from, but as I said she does not have PKD. If she did then I (and the docs) wouldn't consider her as a donor. The common adult form of PKD (ADPKD) is passed on as a dominant trait, she can't transmit what she doesn't have have to her kids.
Thanks for all of the thoughts, I don't know if I'll have internet access in the hospital but I will post when I get home.
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YEAH!!! That is great news!! :cheer: Your sister is an angel. :bow; :bow;
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Good luck, I am hoping all goes well for you and your Sister :thumbup;
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Thinking good thoughts for a great transplant! :2thumbsup;
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Do we have an answer yet? Is the transplant scheduled for the 31st? Good Luck! :beer1;
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Good Luck! I hope it goes wonderful :flower;
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Do we have an answer yet? Is the transplant scheduled for the 31st? Good Luck! :beer1;
Yep, we'll be checking in to Emory at 5:30 on the 31st. I've decided, after talking to my sister and reading everything I can get my hands on, to participate in this study (http://clinicaltrials.gov/ct2/show/NCT00565773). We'll have a 50% chance of doing a bone marrow transplant in addition to the kidney graft, and I'll be on Belatacept and Sirolimus instead of the usual Prograf, Cellcept and Prednisone. I'll keep everyone here updated on how it goes.
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I hope everything goes well! Congratulations! Hugs to your sister, as well! :cuddle;
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Interesting Study. I wish you luck.
Just out of interest.. What was your HLA match with your sister?
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Interesting Study. I wish you luck.
Just out of interest.. What was your HLA match with your sister?
3/6
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:clap; openboat. This is so exciting. Give your sister a big :grouphug; from us. :cuddle;
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This is exciting. :2thumbsup; Keep us updated and take care. We love your sister for doing this! :grouphug;
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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?
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Hope all is going well. Hopefully we'll hear from you soon.
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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.
:cheer: I will be cheering you and your sister on from down here. PKD sucks. :cuddle;
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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. :)
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:bandance; :2thumbsup; :yahoo; congratulations!
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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!
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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! :cheer:
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:cheer: :cheer: 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. :cuddle;
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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. :cuddle;
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:bestwishes; openboat. :bandance; Take it slow and drink plenty. Give that sister the biggest :grouphug; she can handle. What an angel. :cuddle;
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:2thumbsup; :clap;
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?
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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.
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:cheer: 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! :cuddle;
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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.
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:cheer: :cheer: :cheer: I hope it all goes to plan. I will be following your progress. :cuddle;