Got the call and Jaclyn gets a kidney!

[Chris]

10.5mg a dose??  wow...

Yeah that is one of the highest I have seen.

[willieandwinnie]

Susan, hope you get some fresh air and some real rest. That sure is a lot of prograf. Len also had the zenapax infusions and they quickly starting reducing medications, and I pray that is the case for Jaclyn. Keep us posted. 

[TeenHatesDialysis]

Thanks for your input. I think that the other meds that Jaclyn was taking at the same time as the prograf impacted her absorption. She is down to 9.5 mg 2x per day and only taking cellcept with the prograf. All other meds are taken an hour later. Her prograf levels are just a bit on the high side so I think the docs will be lowering her prograf dose again soon. Her 3 month biopsy was completed at 7 weeks and her stent has been removed.  She had 2 spikes in creatinine (1.6 and 1. that both seemed to be induced by prograf spikes due to med changes. Praying for good numbers tomorrow. We need some stability.  .8 - 1.2 sounds good.

[okarol]

  I hope things improve for Jaclyn. Thanks for keeping us informed. 

[pelagia]

Seems like good news.     hugs 

[willowtreewren]

Hugs, Susan.

 

[Sunny]

Hope all goes well. She is so lucky to have you for a Mom watching out for her. Prayers and hugs.

[TeenHatesDialysis]

6+ month update on Jaclyn's kidney transplant. I thought that we would be having a huge 6th month kidney-anniversary on January 4th, but that was not the case.....    Jaclyn rec'd her new kidney on July 4th 2009 and did fairly well with the exception of some Prograf and Cellcept spikes, until the dreaded EBV virus reared its ugly head. In October, Jaclyn was re-admitted to the Lucile Packard Childrens Hospital at Stanford in Palo Alto, Ca. She was in very bad shape. Her EBV virus had gotten out of control. I am infuriated that the Nephrology team did not take it seriously and treat her aggressively, but I can only move forward. The EBV and wiped out immune system caused post-transplant lymphoproliferative disorder (CANCER) The Pet Scan showed lymph node cancer from her mouth to her pelvic area with lesions in her liver and lung. Her immunosuppressants were reduced to almost nothing and she was treated with Rituximab for 4 weeks. Four weeks and much praying later, another Pet Scan, showed the PTLD had cleared. 

The Nephrology Team started to increase her immunosuppressants and sent her back to Colorado. Within an hour of getting on the plane, I received a phone call telling me that Jaclyn's labs numbers were bad (creatinine increasing etc) and she needed to be retested asap. She was tested in Colorado and at first the Nephrology team thought that the culprit was a UTI, but a UTI analysis had not been ordered so she had to go back to the Colorado lab and be re-tested. By that time, she was in acute rejection and told to fly back to California immediately. She was re-admitted to Lucile Packard Childrens Hospital on December 2nd. On Dec 4th, she had another biopsy that originally showed cellular rejection (SEVERAL WEEKS LATER WE WERE TOLD THAT IT WAS ACTUALLY VASCULAR REJECTION). She was treated with 3 does of Methylprednilosone with intermittant infusions of IVIG/Cytogam to prevent EBV and CMV. He creatinine started to improve after a couple of days. After several treatments, her creatinine decreased from 2.4 to 1.4. However, each week she would receive infusions and creatinine would go down, but increase a couple of weeks later. They referred to this as recurrent acute rejection. On Jan7th, 2010, she had her 4th biopsy in 6 months. It showed very mild cellular rejection, but still a major concern because of its recurrence. She is once again receiving Methylprednisolone and Cytogam infusions. She is wiped out. I am micromanaging her prograf and cellcept levels. The lead Nephorologist said that the goal was a prograf trough of 8 and cellcept of 2. Her prograf is currently at 8.1 and her cellcept lab results were faxed to me at midnight and the level was 4.5.

I email Jaclyn's transplant coordinator weekly to express concerns that I would like discussed in the weekly Nephrology meetinag and she blew me off stating  that Jaclyn's situation didn't require her immediate assistance and that she would address when she got around to it and that she had hundreds of other patients. OMG! Jaclyn has been here more than 6 months, fighting for her life, after getting cancer, and then several episodes of rejection and I have to point out that my daughter that my daughter is being over medicated AGAIN by their standards. Jaclyn's medical bills, being paid by 2 insurance companies, have exceeded $2 million and I have to monitor my daughter's treatment constantly. UGH! Thanks for letting me vent. Prayers and positive vibes that Jaclyn gets healthy very soon and a certain transplant coordinator falls off the face of the earth.

I am looking for a new transplant center for my other daughter. I am currently looking in Southern CA as we will be moving in the next year since my husband is working in Irvine 50% of the time. I plan to look at Scripps Green Hospital (Jenna's hospital), UCLA (adult program) and Cedar Sinai. Any input is greatly appreciated.

[willowtreewren]

Oh, Susan.

What a terrible time you have had...

I wish there were something besides good wishes that I could do.

 

Aleta

[cariad]

I am so sorry to hear about Jaclyn's struggles and the total lack of support from the medical staff. I hope that Jaclyn will permanently overcome this obstacle soon.

Since I lived in SoCal for a few years, I would say Cedars is great. No experience with Scripps, but obviously Jenna did well with them. I did not like the feeling I got from UCLA. I could never get anyone on the phone, and even though I left messages, as often as not my calls would never be returned.

Good luck. 

[tyefly]

    Yes  Susan     the story is sad.....   I wish for better days for you ..... and your daughters....

[Chris]

Sorry to hear what is happening and I hope you find another facility who can take better care of Jaclyn.

[RichardMEL]

All my wishes going out to dear Jaclyn and family. This is so frustrating and worrying after the beautiful surprise and gift. All my thoughts that things will improve and she can get back to worrying about normal teenage things like school and boys!!!

[okarol]

Hi Susan, It's just so tragic, all your family has endured. I hope things get better - poor Jaclyn is overdue for some good news.
Did you get my last PM about hospitals?

[monrein]

Susan, I have no useful input regarding hospitals but I do have enormous sympathy for what you, Jaclyn and your entire family has been coping with.  I'm so very sorry that this has been so awful and to have human disregard from that coordinator piled on top is just plain wrong.  I hope that things improve and you'll all be in my thoughts. 

[Sunny]

 Stanford is the transplant hospital I am dealing with. Needless to say, I am getting a little worried for myself after hearing this. Wondering if I should switch to USF in San Francisco. I know the adult and pediatric units are headed by different medical people and I wonder if it makes a difference. On a side note, I receive the San Jose Mercury News and your daughter was in an article at Christmas because your daughter was in the Lucille-Packard Children's Ronald-McDonald House then. I'm sorry she had to spend her Christmas in the Hospital. I think of her often and pray a good outcome.

[TeenHatesDialysis]

Karol, I rec'd your PM about Jenna's team and I plan on checking them out as soon as I get out of here. 

Sunny, The adult team at Stanford is separate from the pediatric team. The surgeon that performed Jaclyn's transplant was from the adult team, Dr. Busque. I highly recommend him. Jaclyn's problems started with problems managing her Prograf and Cellcept and then she got EBV, etc. Some people sail through the transplant process and some struggle. Jaclyn has struggled so there is a lot of bad karma here.

Thanks for pointing out the article in the San Jose Mercury. I didn't even know that was published. Jaclyn's dad, my ex, visited her over the holidays and I was a bit shocked when he brought her back to the Ronald McDonald House with a Mohawk Christmas Eve. Jaclyn and I are still at the Ronald McDonald House, which is a really great place to be. We have met so many great families.  We have befriended 8 heart transplant families, 2 liver transplant families, 1 lung and 8 kidney families. I have seen more problems with the kidney transplants than the other organs.  Another little girl has been here for 7 months trying to keep her kidney that was transplanted in June and has spent more time in the hospital than on the outside. Another teenage boy received a perfect 6 antigen match kidney from his 22 year old brother and ended up with prograf toxicity and hospitalized for more than a couple of weeks 10 weeks post transplant after the medication caused huge oral ulcers in his mouth and throat. 

I currently have all of Jaclyn's lab results faxed via efax.com so they come to my email and I can view them on my cell phone so I know before anyone if her meds need to be adjusted. Spikes in immunosuppressants can cause severe problems. Graph your lab results.  I knew that going from EBV - to EBV + was worrisome, but I didn't know that Valcyte could be increased and Cytogam infusions given to prevent/reduce the severity of EBV and/or CMV. If you are CMV or EMV -, it is something to consider when getting any organ transplant.

I don't want to scare anyone. Everyone's experience is different and Jaclyn's has been a nightmare. Thanks as always for listening to me vent. I really don't hope the transplant coordinator falls off the face of the earth, but I hope she starts collecting unemployment soon and they find someone who can read lab results and adjust meds timely and accurately and takes this job seriously as these kids deserve better.

[Hanify]

Lordy lordy what a battle!  Thinking of you all.

[okarol]

Thank God Jaclyn has you because she's been through so much more than she should have. Thank you for sharing what you have learned. I hope it helps someone else. Best wishes and prayers sent for sweet Jaclyn. 

[Maxridex]

Wonderful news 

[TeenHatesDialysis]

Sorry again for the delayed update. My mom always said, "If you don't have anything nice to say then don't say anything at all". I am going to try to stay nice, but this situation has been very frustrating and ugly. The past month has been one challenge after another. In January, Jaclyn had a Pet Scan that displayed a "hot Spot" in her small intestines. This required a biospy to rule out PTLD. The results were great, no PTLD, yeah!

Although I would have preferred to wait another couple of weeks for another kidney biospy, I was overruled again and Jaclyn had a kidney biopsy on Feb 12th. This biopsy show slight cellular rejection with inflamation. BUMMER, but she has come a long way since October-November PTLD and December vascular kidney rejection. Once again, she was scheduled for Solu-Medrol infusions, 3 starting Feb 16th. This was her 5th round of Solu-Medrol infusions and they must be working since her rejection status improved from Vascular to cellular, which is very good. However, this is the first time that they refused to give her IVIG on the days in between the Solu-Medrol infusions. This was very scary, because the IVIG gives her an immune system a boost since the Solu-medrol wipes her out. I argued and once again was overruled. I didn't like the responses for the IVIG refusal. The first was that it was too expensive. AY YI YI .......OMG! After being told that IVIG was too expensive and after my long, loud GASP, I was told it was a "mistake" to give it to her with previous solu-medrol infusions. Once again, I was overruled. She did not get the IVIG.

The following week, her cellcept levels were 1.3 and 4+. Apparently, not good enough for some of the team that want her Cellcept level between 2-4, but too much for those team members that want her Cellcept levels between 1-3.5.  UGH. Her cellcept levels were increased, which cause her immune system to be further compromised.

Well, that brings us to the past week. On Wednesday, she woke to take her meds and get ready for school. Within seconds of ingesting her Prograf, she vomited across the room........recall scene from Exorcist....VERY BAD . After 1/2 hours, she was able to keep down her 4 mg of Prograf and rest for an hour. After she woke up, she began vomiting not stop, until 6pm, when she was admitted to the hospital and hooked up to IV fluids and Zofran for nausea. Finally peace.

The following day she began having an extremely bad headache and by 3pm she was screaming in agonizing pain with the feeling of daggars going through her temples. She had experienced a migraine in the hospital in December, but this was more intense. Her dad's side of the family have suffered from debilitating migraines, which are often brought on by stress. Hospitals = Stress. I informed the doctors of her dad's migraine history and they administered dilaudid and then increased the dose when her migraine didn't improve. She was screaming in agonizing pain and a CT scan was ordered for her head. They were looking for bleeding in the brain. The results were negative. They gave her oral Max-alt, but that did nothing. She continued in agonizing pain. Then one of her doctors monitored her for several minutes and ordered a Benadryl-Compazine cocktail. This is the newest ER protocol for migraines and is non-narcartic. Her pain subsided completely within 1/2 hour.

Since she became ill on Wednesday and survived her Thursday migraine, her health has not improved. It is currently Monday and her WBC is low, 2.4. Her lymphocyte, ABS, which measured the body's ability to fight off infections is .60, very low. I requested blood tests for EBV, CMS and BK virus. All of the flu tests that were processed over the weekend came back negative. Her WBC is 2.4 and has dropped significantly in the past 5 days. One of her doctors has ordered IgG and IgM tests that will confirm if she needs the IVIG to fight off this infection.

Her creatinine had stabilized between 1.4-1.6, but is 2.0 today. Has anyone experienced increased creatinine with viral or flu-like infections? It is not an hydration issue. She is being IV hydrated and her BUN is 13, although it typically runs in the mid 30s.

It has been 8 months since Jaclyn's kidney transplant and the only time she has been healthy is the first 2 months. Since becoming EBV +, then PTLD, then vascular rejection, life has been H-E-L-L. She has been in the Stanford area for 8 months with the exception of being released for 2 weeks in September and 5 days, Nov 27th-Dec 2.  Sometimes I don't know how either one of us get through this. I feel as though we are walking through hell and you don't stop in hell, you just keep walking and hoping that one day we will find our way out.

Prayers and positive vibes always appreciated.

Thanks again for letting me vent.
Susan, mom of Jaclyn

[monrein]

Susan, I feel just awful that you, Jaclyn and your family are navigating this particular version of hell still and it's been going on for so long now.  I have no answers really but you definitely have all my positive vibes, hopes, prayers, and caring thoughts coming your way.  I hope that others will chime in about the creatinine/infections link, if there is one that has nothing to do with dehydration.
 

[okarol]

I am so aorry, this just is too much for all of you.
Jenna's WBC is also at 2.4 so we reduced her Cellcept (now taking 1/4 pill twice a day = 125 mg X 2 a day) and hopefully her next labs will improve. Jenna had horrible headaches and vomitting after the ATG knocked her immune system out. I don't have any answers. Have you considered asking UCLA for a second opinion?
 

[Sunny]

I'm so sorry things continue to be this difficult for your daughter.
I wish they could just get it all figured out so your daughter could start her new life with a fully functioning kidney transplant.
She is such a brave little thing. I think of her often and pray for a good resolution.

[Wattle]

   Hugs   

I am at a loss for words Susan. Jaclyn has been through so much the past 8 months.

What was the result of the viral bloodwork (EBV CMV) ? Could the rise in creatinine be due to the increase in Cellcept? I don't have any answers either. Just what I have experienced.

I have been having some weird falls in WBC counts also. I was taken off Cellcept for 48 hrs then started again and bloodwork taken daily, this has happened twice. They have no idea what caused the drop. I also have CMV, the donor was +ve I was -ve. :/  So I am now back on Valcyte 450 x2 daily. Six months of meds wasn't long enough for my body, it only took a few weeks to show up in my bloodwork.

I have to agree with Okarol on maybe looking for a second opinion. Although I also understand how hard it is to find another team when you are struggling with multiple problems at the moment.

Hugs to you and Jaclyn