Jaclyn - PTLD Post Transplant Lymphatic Disorder - :~(

[TeenHatesDialysis]

As many of you are aware my 15 year old daughter, Jaclyn, received her new kidney on July 4th. Life has been a roller coaster since then. Unfortunately, she has been back in the hospital for 3 weeks now, diagnosed with PTLD - post transplant lymphatic disorder. She has a lesion the size of a wlanut pushing against the capsule of her liver, causing excruciating pain. She had to be heavily sedated until either antibiotics or the rituximab starting to take effect and decrease the inflamation.

As many of you know I have posted Jaclyn's journey on facebook and on her www.cotaforjaclynp.com sites, but I have been reluctant to post anything regarding her current diagnosis as it has been devastating. After being sick for so many years, and then on dialysis and finally getting a transplant, she is extremely ill with PTLD.

I feel like a failure as a parent. I researched hospitals to find the best success rate for kidney transplants, only to find out that my daughter's kidney is perfect, but she has an oncology issue now. Never in a million years would I ever think this could happen. I think that her immune system was over compromised with prograf/cellcept doses that were too high. Her immune system was completely wiped out. She has had 2 treatments of Rituximab and at least 2 treatments to go and her morning prograf is .5 and night 1mg. Cellcept has been discontinued.

This is very scary. I have another daughter who is 18 and has 20% kidney function. I planned to have her kidney transplant at Lucile Packard Childrens Hospital at Stanford or Stanford Hospital, but now I have no faith in the transplant team. 

Please don't post anything regarding Jaclyn's PTLD diagnosis on my facebook or on Jaclyn's COTA website. Any comments or positive news regarding PTLD treatments, prayers and positive vibes are appreciated.

Has anyone had any experience at Cedar-Sinai or another California hospital?

Those that are at greatest risk of getting PTLD are EBV - . I did not know that Jaclyn was EBV -.  Most people are EBV +. PTLD only occurs in approx. 1% of kidney transplant patients and mainly children that are EBV -, but it is life threatening and very scary.

As always, thank you for your support.
Susan, mother of Jaclyn

[okarol]

Susan, I have sent you a PM.
Sending you hugs 
  Praying for Jaclyn.

[RichardMEL]

Susan *HUGS* I am so sorry at the turn of events that have happened.

I just wanted to say something in response to your post. You are NOT a failure as a parent!!! I couldn't think of anyone more devoted to their children and of course Jaclyn's journey than you. You've done everything you humanly can for her - the web site, the support, the efforts, the looking for the best hospitals, research etc... You have done far more than some others probably would. Yes, Jaclyn has had a horrible setback - but it's hardly your fault or due to some lapse on your part.

Hang in there please. Hopefully things can improve for her. She is absolutely in our thoughts and hearts at this time.

 

[lola]

 

[Romona]

  You are a great parent. You made the best decisions you could with what you knew. My prayers are with you.

[pamster42000]

Sorry that your daughter and your family have had to live through this experience.

Seems like some people get a transplant and have all the luck in the world and then others have misfortune after misfortune. All a person can do is go by the information you have at the time when a decision is made. No one person can foresee every complications that may possibly happen.

I had been with my daughter when she was hospitalized numerous times when she was in terrible pain and it is such a helpless feeling. You just wish you could have the pain yourself instead of your child.

I also at times felt like a failure as a parent.....but looking back now I feel I did the best I could considering the circumstances.

Is there any treatment or surgery that can be done for daughter's current condition. I have never heard of it before.

My thoughts are with you and I hope the best for your daughter, Jadyn.

[Sunny]

I am very sorry for your daughter's troubles with her transplant. What I hear you saying is that maybe she didn't have appropriate treatment from the medical facility. This is something out of your hands and can't possibly be your fault so please don't feel like a failure of a parent. You are doing your absolute best given the information available. It is unfortunate that these extremely rare events are happening to your daughter. As a mother I know that all we want to do is ease any pain for our beloved children. Hang in there for the sake of your children. As you mentioned, maybe look into other medical facilities for when the time comes for your other daughter.

[TeenHatesDialysis]

Update on Jaclyn's PTLD..... Jaclyn received 4 treatments of Rituximab and her Cellcept discontinued and Prograf reduced to .5mg AM and PM. After 4 weeks, her Pet Scan, which had shown severe case of PTLD from neck to pelvis, lesions in liver and lungs, was NORMAL! 

Once the PTLD had cleared, it was time to increase the immunosuppressants in order to prevent kidney rejection. On Friday, Dec 4th (5 month kidney anniversary), Jaclyn had a kidney biopsy due to increased creatinine. Third biopsy in 5 months, however, this one showed rejection. There are different levels of rejection 1A, 1b, 2a, 2b, 3A, 3B. Her rejection was 1B, however, increasing immunosuppresants to reverse rejection while not reactivating the EBV or PTLD is quite the challenge.

So far, 3 infusions of Methylprednisolone (IVMP) and 3 infusions of Cytogam and 1 infusion of IVIG and her creatinine is down to 1.8 from 2.2. She is scheduled for 3 more half infusions of Methylprednisolone and 5mg of prograf AM and PM and Imuran in PM. Hoping this reverses kidney rejection while keeping EBV and PTLD AWAY!

Poor kiddo was released to home twice for 5 days each time only to be emergency flown back to California. UGH! This kid needs a break.

[cariad]

Great news on the normal PET scan!      

I am sorry you and Jaclyn have to go through this frustrating and terrifying high-wire balancing act. I have also never heard of this condition, so have nothing to offer in terms of advice or soothing words. You're right - your child needs and deserve a break. I hope one is coming her way directly.

Take care 

[willowtreewren]

Susan,

Sending you and Jaclyn many 

She really does need a break. And I hope one is on its way right now.

Aleta

[okarol]

Poor Jaclyn. This must be so hard for all of you Susan. I pray things improve soon. 

[monrein]

Susan, I can only imagine how tough all this has been on your entire family.  I'm thinking of you and sending positive thoughts Jaclyn's way.   

[Wattle]

Sending hugs to you Susan and Jaclyn. I agree she really needs a break, I hope they have it settled by Christmas and she can enjoy the holiday without the needle sticks!!   

[pelagia]

Susan, I haven't been on much in recent months so I missed your original message.  This is way more than any child should have to deal with, but I am very happy to be coming in after the update to hear that Jaclyn is doing better.  I remember when you first joined IHD and my first impression has never been changed.  You are a dedicated and loving mother.