Jenna transplant

[smartcookie]

I saw a post with Jenna at home!   

[okarol]

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! 😃

[iolaire]

Good luck on the labs and speedy recovery.

[PrimeTimer]

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!   

[PaulBC]

I'm so happy to hear Jenna has had her 2nd transplant and is doing well. Keep us posted!

[okarol]

Yesterday creatinine was 1.41 - they lowered her Prograf to 5/5 and prednisone from 20 to 15.

[iolaire]

Yesterday creatinine was 1.41 - they lowered her Prograf to 5/5 and prednisone from 20 to 15.

Great creatinine is it still dropping?

[okarol]

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.

[PaulBC]

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.

[okarol]

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.  👍

[smartcookie]

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!

[okarol]

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 

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.

[iolaire]

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.

[okarol]

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.

[iolaire]

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.

[SweetyPie]

Was plasmaphereisis done before or after the transplant? Is it done outpatient? Trying to look at a time frame for myself

[okarol]

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.

[SweetyPie]

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.