I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Xplantdad on December 22, 2016, 07:09:39 AM
-
Well, we got the call that we've been waiting for-for almost 4 years! We got a kidney offer for Holly this morning at 4 am.
We have decided to accept the offer-and we will put Holly on dialysis this morning as instructed by the staff at Mayo-then, go the hospital in anticipation of the kidney arriving. We should be at the hospital by 9:30am. Once the kidney arrives-the folks at Mayo will check it out thoroughly and if everything is good to go with both Holly and the kidney-the transplant should happen around noon.
We ask that you please pray for the deceased donor and the donors family, for Holly's upcoming surgery and a good outcome after surgery.
Here's Holly last year at the Barrett-Jackson auction in Scottsdale with her friend Chris Jacobs from the Overhaulin' TV show (and the Barrett-Jackson auction coverage on TV)
(http://img.photobucket.com/albums/v645/xplantdad/Barrett%20Jackson%20Friday%202015/tn_DSC_0555_zpsbe45f731.jpg)
-
Anticipating a great outcome.
Prayers continuing.
-
Very very happy for you! Praying for a great Outcome!
-
This is the best news I've heard in a long time. I am so excited and am fervently hoping for more good news from you as the day goes on.
Prayers to your family and to the donor's family.
-
Off to the hospital now! We will update as we can :)
Thanks everyone. :grouphug;
-
Merry Christmas!
:pray;
-
Many many prayers for Holly, the kidney and her donors family. Best wishes for a VERY Merry Christmas! :santahat;
-
Good luck
-
Much luck to all!!
:grouphug;
-
Best of luck. I hope everything works out to a "T."
-
Transplant is done and she's in recovery. The transplanted kidney has already made a bit of urine :) . Thank you everyone for your prayers and positive thoughts
-
Fantastic news, hugs for the both of you!!!
:cheer:
-
Great news! It's been a rough day on my end and I am so happy to end it with such great news.
-
Transplant is done and she's in recovery. The transplanted kidney has already made a bit of urine :) . Thank you everyone for your prayers and positive thoughts
Oh, this has made me rather teary. I hope everything goes well. Please keep us posted! We're all so excited for you both!
-
Transplant is done and she's in recovery. The transplanted kidney has already made a bit of urine :) . Thank you everyone for your prayers and positive thoughts
That is great news! Will continue cheering and praying for you guys! :cheer:
-
She's out of recovery and in her room. They are monitoring urine output now. She is asleep. It's been a long day. Lots to do tomorrow. Lots to learn...but a lot is the same as the cardiac transplant follow up. 21 appointments set up already...sounds about right :)
Thanks to everyone for their positive comments...and prayers :)
-
Bruce so happy for you guys! I can really say I know the great feelings and happiness you and your family now have. It's great. Prayers are with you and your daughter as the recovery begins. :flower;
-
What fabulous news to see this evening!!! Congratulations and many prayers for a smooth recovery! So, so happy for you, Holly, and your family!
:2thumbsup; :clap;
-
Update part 1:
Here's the update for holiday after transplant still waiting for the kidney to output urine. But that's to be expected on kidneys that have been out of the body for awhile. They will probably do dialysis today to help her clear the toxins from her body. We will be moving out of the critical room to the regular care room. Doctor's rounds will happen here in a bit. As if on cue, Holly's long term nephrologist, Dr. Thomas came by and visited, too. We thanked him for his outstanding care...as we will now transition to the Kidney transplant team docs.
Merry Christmas everyone!
And part two:
Update for the afternoon. Holly is in dialysis now. They are not pulling off any fluid...just filtering the blood. Transplant surgeon came in and thinks everything looks good. Transplant follow up team and doc think everything looks great, too. Word is that we may be home for Christmas eve! We have 70 plus appointments so far over the next couple of months...and dialysis starts (for the short term) on Monday evening.
Part three:early evening today-Cardiac team came by and said everything looks great on their end. Praise God!
(http://img.photobucket.com/albums/v645/xplantdad/Adam/transplantdayafter_zpsk4lonwiu.jpg)
-
And thank you to all of you who have followed along! You are the best :thumbup;
-
Hopefully Holly will have her beautiful self with her new beautiful kidney snuggled up with her beautiful family for Christmas Eve. ;musicalnote; Joy to the world... ;musicalnote; ;musicalnote; Something tells me there will be a lot of singing and spontaneous giggles this year at your house..have a Merry Christmas!
-
Hope Holly is going home today. Wishing your family a wonderful Christmas! Congrats.
-
Glad to hear everything going as well as planned.
Hoping all continues on schedule with no surprises.
Wishing everyone a Merry Christmas and a much better New Year.
Take Care,
Charlie B53
-
Wonder ful news for Christnas and New Year!xxx
-
Hope Holly is going home today. Wishing your family a wonderful Christmas! Congrats.
And we have been home since last night. We have one outpatient IV to do today, plus a blood draw to check her levels of immunosupression ( a normal thing)....then home to celebrate the best Christmas ever. I have said so many prayers for the donor and the donor family...and will continue to do so.
Merry Christmas everyone!
-
So happy for you, Holly and your family. This is the best Christmas news ever.
Best wishes for a Happy and busy New Year!
Kathy
-
Great news !!! Well done!!! And the best of luck!!!
... And please let us know how "things" develop ...
... And all the best wishes from Kristina. :grouphug;
-
Such a wonderful story and pictures.
-
So far everything is going great. Every other day blood tests to monitor kidney function as it "wakes up", also to monitor her medication levels as her body gets adjusted to them and check the rate of metabolism. Also, still doing dialysis (either pulling off the minimum...or in the case of last night, just above the minimum)...until the kidney wakes up fully.
The dialysis is being done in center-so my wife and I get our respite from NXStage home hemo...kinda nice after a year doing it at home. No complaints here!
-
Wonderful news! I can't begin to explain how much this will mean to her life and health.
-
Happy New Year to you, Holly and her new bean! How is she doing? Hope this isn't too personal but am curious, are they telling her to drink lots of water? Thought I've read other posts about transplants and the docs say drink lots of water to wake up or work the new kidney. Is it the same in Holly's situation? I think it would be hard for someone to live with fluid restrictions for so long and then one day be told to drink up. Hope Holly is doing well.
-
Primetimer....thanks for asking! That was a question that I asked as well! They told us to limit intake to 1500ml per day until the kidney woke up. We did Dialysis on December 26 (took off the min) December 28 (took off 2.0) and December 30 (took off the min). It appears that the kidney started to wake up on December 30...and we've been monitoring urine output from the start. When she was first home, she was averaging 150 to 300 ml per day. Today so far, she's output 1300ml.
We go for blood tests early tomorrow am and for a quick clinic visit, but they told us that we could be close to being done with dialysis :)
Then, the next step is to get the stent out..and once the dialysis is done, the CVC cath!
Holly is progressing wonderfully from the surgery...and we are trying to take walks of at least two blocks each day.
Oh, Holly has named her kidney Alejandro :cuddle; LOL!
Charlie, she is so happy right now...but also understands that someone died...so she could get her kidney.
Thanks again everyone for the good wishes!
-
We are so happy for Holly and her "Alejandro the kidney". We wish them many happy years together! Bet she looks forward to getting off dialysis, I cannot imagine what her life has been like and now to not have to be on dialysis...my husband says just getting to drink what you want would be worth going thru a transplant (altho he has stated he doesn't want one). I imagine a young woman like Holly is ready to get out and about without having to think of running back home or to a center during certain hours to do dialysis...good for her! Hope you guys keep us posted on her progress, emotionally, physically and medically. Seems that on one hand she is going through a very serious situation while on the other, a very exciting one. I just could not imagine...
-
Hi PT! Holly's output for today so far is 1950ml...and the day isn't over yet...it's 5:21pm. Kidney is definitely waking up...and the blood tests are showing all of the necessary progression towards complete wake up. They cancelled dialysis for today...and after the blood test tomorrow-if all looks good and they cancel dialysis, the doc said that they will pull the tunneled CVC tomorrow.
I will certainly keep everyone updated about what's happening with her. :thx; :grouphug;
-
Whooo Hooooo!
-
Men o men that's such fantastic news!!!
Happy peeing darlings!
:cheer: :cheer: :cheer:
Love, luck and strength, Cas
-
Great news! Happy for you, Bruce and Holly! A better life is ahead!
-
Congrats to you and your wife, too... Hootie on your wife's transplant! Thanks Cas for the good wishes-you, too Charlie!
Blood tests this am show continued progress. They are cancelling tomorrow's dialysis...and if they cancel it for Friday, the tunneled CVC cath will come out. The doc just doesn't want to rush into getting the cath out and having something happen :)
So, we take it one day at a time. And that is fine with us!
-
I'm such a chicken with many procedures, and that cath doesn't HAVE TO come out so soon. She can wait another week, just to be sure. And that wouldn't hurt a thing except extend the time before she can FINALLY stand in the shower and get ALL wet!
-
Here's the update for Holly. Kidney function is continually improving. She's doing number one...quite a bit...and is above the daily average.
She got the CVC (Central venous catheter) taken out today. The CVC was used as the hook up for dialysis both at home and at the dialysis center...which means....NO MORE DIALYSIS! All of her blood tests are trending in the right direction...and where they expect Holly to be. Next step is staples removed next Tuesday and stent removed next Wednesday (Oh, and a million blood tests...LOL).
And I packed up all the NXStage stuff for them to pick up. We have so many dialysis supplies that they cannot take back. We're going to research to see if there are any dialysis training classes that could use any of this stuff...if not, we will pitch it :thumbup;
-
"Holly News is Happy News"! So glad she got the cath out and is OFF dialysis! Looks like you've got some celebrating to look forward to this weekend, have fun (or as much as the patient can!) :guitar:
When I go, I want to donate my organs but also was set on donating my body to a willed body program for med students to practice on (they don't allow you to do both). Cadavers have to be intact for the med students to learn on. But the more I think about it, the more I feel that donating ALL my organs, including skin, muscles and corneas would perhaps give society the biggest bang for the buck. Thanks to Holly's story and the others on this site, that when my time is up, I'm leaning more towards having every part of me donated.
Let the Good Times Roll!! ;musicalnote; ;musicalnote; :popcorn; :bandance;
-
Yay! Wonderful news!
-
Bruce, really happy Holly is doing well. We donated our consumable supplies to a free health clinic in our area. They took syringes, tape, gauze, saline, etc. no meds and no dialysis paks, saks, bags, needles. Others have given to vet clinics. Davita is having the machine, bags, paks, saks,, picked up for us. On Monday we will be completely rid of the dialysis stuff.
The wife had her first month anniversary today with a visit to Emory. All is well as blood work was perfect. Got her second infusion of belatacept. Appears to be working well. :bandance;
Continued good health to Holly...
-
Bruce, really happy Holly is doing well. We donated our consumable supplies to a free health clinic in our area. They took syringes, tape, gauze, saline, etc. no meds and no dialysis paks, saks, bags, needles. Others have given to vet clinics. Davita is having the machine, bags, paks, saks,, picked up for us. On Monday we will be completely rid of the dialysis stuff.
The wife had her first month anniversary today with a visit to Emory. All is well as blood work was perfect. Got her second infusion of belatacept. Appears to be working well. :bandance;
Continued good health to Holly...
Hootie...great idea on the free health clinic and vets. We will do that as well.
Fresenius will not take the paks/saks/bags/etc so we will have to toss that stuff. I am waiting on the Fresenius folks to come and get the cycler...still :)
Sounds like your wife is doing well, too! Here's to her continued good health, too! :cuddle;
-
Actually, Davita is taking the core dialysis fluids along with cartiledges and paks. They are trashing them for us.
-
Sending all good thoughts to Holly!
And my thanks to those families with the compassion to donate. They are the best people.
-
I figured that I would give an update on Holly...as we are just past two months out from her transplant. Thing are going awesome for Holly and "Alejandro". Holly's creatinine is 1.2 (sometimes 1.1), she's on a low dose of immunosuppressants (the dose it actually lower than when she was on them just for the heart transplant!), all of the other markers and levels that they are measuring are well within spec, too!
She's gone from 80.2KG (right after transplant) to 71.1KG now. Her dry weight when she started dialysis was 69.6 (I think?) so she's almost back to that weight, too.
We pray nightly for the person who donated the kidney.
-
Thanx for the update Xplantdad. Real nice to hear all of you are doing so well.
Love, luck and strength, Cas
-
Wonderful news!
-
Thanks for the update. Here is to hoping that her kidney is one of those that hold up for the long term. Maybe she will make it to the future with artificial kidneys on this one.
-
Wonderful update, thank you.
-
Wonderful update, thank you.
:thumbup; Thank you everyone :)
-
Oh, this is wonderful news! And I am so thrilled for that 1.2/1.1 creatinine.
Wishing Holly and "Alejandro" (love that) many years of good fortune!
-
Many thanks for the update Xplantdad,
I am so glad that "things" are going well for all of you
and I am also glad to read that Holly is now on a low dose of immunosuppressants...
I send you my best good-luck-wishes from Kristina. :grouphug;
-
Thanks you Lorinn and Kristina :thumbup;
-
Does Holly talk much about this whole transplant experience? Is she taking it all in stride, or is she rather blown away by it all?
-
MM....Since Holly had a heart transplant at the age of 5 1/2 months...we've had 26+ years to discuss transplantation (the tremendous gift that she was given 26 years ago that allowed her to be here now). We've had numerous talks when Holly was smaller. She (and we) have learned to live each day...as if it's our last....and relish our time together. :cuddle;
We have recently found and been in touch with the donor family and hope to meet up with them soon-they have had a harder time with this than Holly (as being a transplant is all she's ever known...I told them that I am available whenever they need any questions answered. I have shared with them pictures of Holly (only after I asked if they wanted to see them) and some of the newspaper clippings, too.
As far as the kidney, Holly is aware that someone passed away-and was able to help a bunch of people. Kidneys went to Holly and another female at Mayo, liver went to someone at Mayo, pancreas and lungs went to another person at Mayo :)
I think this whole experience has been a whirlwind, but in an odd way, Holly was able to experience some of the stress/anticipation/rejection that we experienced while waiting for Holly's heart transplant.
Does that even make sense? ???
-
Yes, that makes sense.
Since she has had a transplanted heart for so many years, now that she has a new kidney, has her meds regimen changed at all?
-
Yes, that makes sense.
Since she has had a transplanted heart for so many years, now that she has a new kidney, has her meds regimen changed at all?
Oddly enough, she's on less immunosuppressants now (lower dose of Tacrolimus) than before the kidney transplant. I would have to attribute that to the better kidney function. She's now taking the lowest dose available of Myfortic as well (which she wasn't on before the translpant :) )
-
I wanted to update everyone at the one year anniversary for Holly after the kidney transplant. All is going great! She had almost two weeks of testing for both the kidney and the heart transplants-and the doctors couldn't be happier. They did the second kidney biopsy this year-all is good. She doesn't have to have another biopsy until 2022. She's been "pushed out" officially and will only see the kidney transplant team twice a year (June and December). She will only see the heart transplant team once a year (December). They will piggy back the blood tests for both-so they are done at the same time, too. Blood tests will happen every 3 months to check immunosuppressant levels.
We are blessed in many ways-and are so thankful for the donors and their families for their gift of life....that allowed our daughter to still be with us!
-
That's great news, XPD. May there be many more great reports. Go Holly.
-
We are blessed in many ways-and are so thankful for the donors and their families for their gift of life....that allowed our daughter to still be with us!
I second that.
I remember talking about the choice to be a donor a few times as a young adult (and making the choice). But from my experience most of us make the choice knowing its a good thing to do but without any real grasp whosoever of the significance of the choice. That choice ends up having a huge significance once you or your loved ones benefit from that choice.
-
Awesome news!
-
Thanx for the update. Great to hear such good news.
Love, luck, strength, Cas
:cheer:
-
I wanted to update everyone at the one year anniversary for Holly after the kidney transplant. All is going great! She had almost two weeks of testing for both the kidney and the heart transplants-and the doctors couldn't be happier. They did the second kidney biopsy this year-all is good. She doesn't have to have another biopsy until 2022. She's been "pushed out" officially and will only see the kidney transplant team twice a year (June and December). She will only see the heart transplant team once a year (December). They will piggy back the blood tests for both-so they are done at the same time, too. Blood tests will happen every 3 months to check immunosuppressant levels.
We are blessed in many ways-and are so thankful for the donors and their families for their gift of life....that allowed our daughter to still be with us!
So glad that Holly is doing well. I personally know of a family whose loved one donated her kidneys upon her death. The family said it softened the blow for them and helped knowing that she gave someone life. They want the recipient to do well. Sounds like Holly is doing very well. Her gifts of life are in the right place being with her. Very happy that you have shared this with us. Hope you have a very Merry Christmas! :santahat;
-
Thanks for the update, merry christmas.
-
Thank you everyone for the positive wishes. We had a very good Christmas. As I said before, we are blessed.
Thanks for being here for us! :grouphug;
-
I really like the quote from you: Thank God and donor for another day. Everything else is irrelevant. It’s my everyday’s mantra now.
Take care.
-
:)
-
I wanted to update everyone...since today is the 2nd anniversary of Holly's kidney transplant. She's still doing amazing (praise God) and we've had zero issues.
Last weekend was the best weekend of our lives, by far. We finally met with the family that donated the heart to Holly. Read about it here if you'd like: http://ihatedialysis.com/forum/index.php?topic=34929.msg528125#msg528125
Merry Christmas to everyone.... :grouphug;