I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: kitkatz on July 26, 2017, 11:51:48 AM

Title: Jenna transplant
Post by: kitkatz on July 26, 2017, 11:51:48 AM
Karol says Jenna is in for 2nd transplant today. Live donor kidney is being flown in from north east   Surgery is scheduled for for 5 pm tonight.
Best wishes to everyone involved.
Title: Re: Jenna transplant
Post by: Jean on July 26, 2017, 11:55:03 AM
Thanks for the update Kit
Title: Re: Jenna transplant
Post by: smartcookie on July 26, 2017, 12:47:43 PM
Woooohooooo!!  Loving all these transplant stories!  Go Jenna!  :yahoo;
Title: Re: Jenna transplant
Post by: MooseMom on July 26, 2017, 01:16:02 PM
Okarol and Jenna have been through so much.  I sure hope things go well.  That girl needs a chance at a normal life.
Title: Re: Jenna transplant
Post by: SooMK on July 26, 2017, 01:30:10 PM
Hoping all goes well. This is wonderful.
Title: Re: Jenna transplant
Post by: Xplantdad on July 26, 2017, 01:32:04 PM
Great to hear...hoping for the best~!
Title: Re: Jenna transplant
Post by: kristina on July 26, 2017, 01:52:39 PM
Dear Okarol and Jenna, I am thinking of you and keep my fingers crossed that everything goes well.
Good luck and best wishes from Kristina. :grouphug;
Title: Re: Jenna transplant
Post by: iolaire on July 26, 2017, 03:24:44 PM
Its amazing how fast her kidney got lined up once things fell into place.  I'm "friends" with her need a kidney site on Facebook and it was only very recently that a friend of her's donated a kidney into the paired exchange program and by the time that donor was out of of the hospital a donor was identified for her!  Its fairly amazing how its all happening due center based networks of of people donating kidneys on behalf of their loved ones with the hope that in turn someone else will do the same for the person they represent.  I also find it interesting that the kidneys are still flown across the country. 

I wish her the best and hope Okarol does ok with all the stress if it really happening.  I've always believed the role or the partner or loved one is the hardest, us patients just get to live through the stressful part in a Anesthesiologist created daze where the loved ones have to do all the waiting and worrying.
Title: Re: Jenna transplant
Post by: Blake nighsonger on July 26, 2017, 05:28:07 PM
Jenna Jenna Jenna !!! go go go i'm Routine for you . What a great thing.
Title: Re: Jenna transplant
Post by: nursey66 on July 26, 2017, 05:52:34 PM
So happy for you ! Good luck and God Bless you !
Title: Re: Jenna transplant
Post by: PrimeTimer on July 26, 2017, 06:58:40 PM
This is very good news! Sending Jenna, Okarol, donor(s), their families and everyone in the paired exchange program best wishes.
Title: Re: Jenna transplant
Post by: Simon Dog on July 27, 2017, 01:07:23 AM
Quote
I also find it interesting that the kidneys are still flown across the country. 
A pilot friend loves it when an organ is booked on his flight since it gives him first priority for a landing slot.  He tells me he simply has to mention one term to air traffic control (I think it was "life flight" but I am not sure of that) and he's moved right to the head of the line.
Title: Re: Jenna transplant
Post by: cassandra on July 27, 2017, 02:53:28 AM
This is such good news. Any updates?

Lots of love, luck and strength, Cas

    :flower;
Title: Re: Jenna transplant
Post by: iolaire on July 27, 2017, 05:13:20 AM
This is such good news. Any updates?
At about 2am eastern they posted Jena is resting comfortably in ICU.
Title: Re: Jenna transplant
Post by: smartcookie on July 27, 2017, 08:19:51 AM
Yeeessss!!  I have followed Jenna's story for quite some time and am so excited for her!  I pray this little bean works for her for many glorious years!!!
Title: Re: Jenna transplant
Post by: Michelle2016 on July 27, 2017, 09:02:09 AM
Best of luck.
Title: Re: Jenna transplant
Post by: Xplantdad on July 27, 2017, 10:13:35 AM
This is such good news. Any updates?
At about 2am eastern they posted Jena is resting comfortably in ICU.


Thank you for letting us know. Such great news!!
Title: Re: Jenna transplant
Post by: cassandra on July 27, 2017, 11:48:59 AM
Fantastic news!!!

   :yahoo;
Title: Re: Jenna transplant
Post by: Rerun on July 27, 2017, 12:47:52 PM
You go girl!!   

        :pray;
Title: Re: Jenna transplant
Post by: willowtreewren on July 27, 2017, 12:50:21 PM
This makes me feel so happy!  :yahoo;

 :flower; :flower; :flower;
Title: Re: Jenna transplant
Post by: nursey66 on July 27, 2017, 04:32:11 PM
 :clap;
Title: Re: Jenna transplant
Post by: iolaire on July 30, 2017, 03:24:51 PM
Per Facebook she walked on Saturday and had her first real meal on Sunday morning - both are positive milestones. 
Title: Re: Jenna transplant
Post by: MooseMom on July 30, 2017, 03:30:05 PM
Thanks for letting us know!
Title: Re: Jenna transplant
Post by: cassandra on July 30, 2017, 10:01:00 PM
Thanx Iolaire, what's your creatinine down to today? So great to read good news

     :cheer:    :cheer:    :cheer:
Title: Re: Jenna transplant
Post by: iolaire on August 05, 2017, 03:12:11 PM
They just posted after today's lab work results the hospital will release Jenna today.
Title: Re: Jenna transplant
Post by: smartcookie on August 07, 2017, 07:28:55 AM
I saw a post with Jenna at home!   :yahoo; :yahoo; :yahoo;
Title: Re: Jenna transplant
Post by: okarol on August 07, 2017, 07:33:19 AM
Hello - We are at Jenna's first 6am post-transplant labs and follow up appt. She's feeling pretty good and we got a little sleep yesterday. Showering is a challenge because she has a chest catheter, PD catheter, large incision and wound drain. Also, not to jinx anything, we did not cancel her dialysis supplies that came on the day of her transplant. So she has 28 boxes of fluid to deal with. Some centers take it back to use for PD training while others refuse to take any of it. Hoping today's labs are good! 😃
Title: Re: Jenna transplant
Post by: iolaire on August 07, 2017, 09:26:01 AM
Good luck on the labs and speedy recovery.
Title: Re: Jenna transplant
Post by: PrimeTimer on August 07, 2017, 10:28:52 AM
So happy for this girl! Jenna is a beautiful young lady with a whole new life ahead of her. That would be a lot of excitement to suddenly take in. Here's to that beautiful new bean!  :beer1; 
Title: Re: Jenna transplant
Post by: PaulBC on August 07, 2017, 10:35:40 AM
I'm so happy to hear Jenna has had her 2nd transplant and is doing well. Keep us posted!
Title: Re: Jenna transplant
Post by: okarol on August 09, 2017, 12:06:38 AM
Yesterday creatinine was 1.41 - they lowered her Prograf to 5/5 and prednisone from 20 to 15.
Title: Re: Jenna transplant
Post by: iolaire on August 09, 2017, 04:44:08 AM
Yesterday creatinine was 1.41 - they lowered her Prograf to 5/5 and prednisone from 20 to 15.
Great creatinine is it still dropping?
Title: Re: Jenna transplant
Post by: okarol on August 11, 2017, 11:42:15 PM
Yesterday creatinine was 1.41 - they lowered her Prograf to 5/5 and prednisone from 20 to 15.
Great creatinine is it still dropping?

As of Thursday it had bumped up to 1.7 but they think it's because her Prograf is very high. We are going in to the hospital in the morning for labs for creatinine and Prograf only.
Title: Re: Jenna transplant
Post by: PaulBC on August 12, 2017, 03:52:37 PM
My daughter's creatinine was also elevated by too much prograf (most likely cause anyway). It took them a while to get it right. I hope Jenna is recovering well otherwise.
Title: Re: Jenna transplant
Post by: okarol on August 12, 2017, 06:23:44 PM
Yes, creatinine back down to 1.4 and another reduction in Prograf will hopefully improve it even more. Her blood pressure spikes up in the evening so they will figure out what to do on Monday. Her heart rate is also high, and the doctor said this can also be related to the Prograf or the prednisone.  She is still tender in her incision area, and still a little tired, but she said her mental awareness is better than it has been for a long time.  👍
Title: Re: Jenna transplant
Post by: smartcookie on August 14, 2017, 12:54:41 PM
I am so glad to hear that she is doing well!  Jenna and I are the same age and I cannot imagine going through what she has been through.  Please let her know we are all rooting for her and her new bean!
Title: Re: Jenna transplant
Post by: okarol on August 28, 2017, 09:41:53 PM
I am so glad to hear that she is doing well!  Jenna and I are the same age and I cannot imagine going through what she has been through.  Please let her know we are all rooting for her and her new bean!
I will, thank you  :thx;

Last Friday got her wound drain out and all the incision staples too.
Today she had surgery to remove her ureter stent, chest catheter and PD catheter.
After a couple more days she will be able to shower again!
Every day we think of all the people waiting, and how hard it is to hear when someone else got a transplant.
And for those who cannot get a transplant, it breaks my heart.
As we know, there are no guarantees on how long a transplant will last. I am hoping Jenna can make the most of this new chance.


Title: Re: Jenna transplant
Post by: iolaire on August 29, 2017, 04:39:52 PM
Last Friday got her wound drain out and all the incision staples too.
Today she had surgery to remove her ureter stent, chest catheter and PD catheter.
After a couple more days she will be able to shower again!

Congratulations thats a great accomplishment and has to be a relief for her.  Its great as the hospital ports start to get removed.  I hope she heals well from those various access points.
Title: Re: Jenna transplant
Post by: okarol on August 29, 2017, 10:22:44 PM
Just looking through my notes. I am afraid to see how much Jenna's medical bill will be, after insurance and Medicare, just for her desensitization treatments.

Over 2 months, she had:
Surgery to add a permacath for plasmapheresis.
1 dose of Rituximab which is about $10,000.
12 plasmapheresis treatments.
6 Thymoglobulin infusions.
8 IVIG infusions.


Title: Re: Jenna transplant
Post by: iolaire on August 30, 2017, 06:12:32 AM
Just looking through my notes. I am afraid to see how much Jenna's medical bill will be, after insurance and Medicare, just for her desensitization treatments.

Hopefully your co-pays are capped at some point?  If not yes you should be very fearful. 

My non eventful transplant had a co-pay after Medicare of about $1,200 but they had not billed my secondary so I hope that will be fully covered.  I've yet to see anything from all the clinic visits, lab work, etc.. But I have seen the non immunosuppressant pharmacy bills on the Aetna site and I've already hit my co-pay limit on those so they are fully covered.
Title: Re: Jenna transplant
Post by: SweetyPie on March 08, 2018, 05:22:42 PM
Was plasmaphereisis done before or after the transplant? Is it done outpatient? Trying to look at a time frame for myself
Title: Re: Jenna transplant
Post by: okarol on May 04, 2018, 12:05:15 AM
Was plasmaphereisis done before or after the transplant? Is it done outpatient? Trying to look at a time frame for myself

Jenna had plasmapheresis and IVIG over 4 weeks before the transplant, done outpatient, each time took about 2 hours.  Then she had more plasmapheresis immediately after the surgery, in her hospital room.
Title: Re: Jenna transplant
Post by: SweetyPie on May 04, 2018, 03:26:28 PM
Plasmaphereis is tough, I didnt like it. Had to do it for 4 weeks right after my live donor. Trbasplant lasted a year. Not sure what's the situation for a deceased donor.