I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: TeenHatesDialysis on July 04, 2009, 04:58:21 PM
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After having several potential living donors rejected, several more had been going through the lengthy process when we got "THE CALL" at 2am this morning. A 22 year old organ donor was brain dead from a vehicle accident and being kept alive by machines. His relative decided that he would not want to be kept alive artificially and graciously agreed to donate his organs. He was either at Stanford, our transplant hospital, or close by and he is a 3 antigen match and negative crossmatch for Jaclyn. We flew from Denver to San Francisco at 6am this morning. All airlines were full and our 3 seats were $1900 each! Crazy! Yes, the airlines knew that she had to get to San Francisco for a kidney transplant and still refused to give us a better deal. I am hoping that the insurance company covers most of it, but I knew that she had to be on the plane and at Lucile Packard Childrens Hospital asap. She went into surgery at 2pm. Our surgical team is out this weekend due it being the 4th of July holiday weekend, but we have always been impressed with the transplant staff at Stanford and they brought forward a very impressive team. Jaclyn's surgery will continue 4-5 hours so I do not expect her to be done with surgery until 7pm tonight. It has been 2 1/2 hours and I wish that I would get an update, but nothing yet. Please pray or send positive healing vibes her way. It is ironic that Independence Day has always been her favorite holiday. She loves fireworks and is quite the piromaniac. She will get her new kidney and celebrate her new found freedom from dialysis every 4th of July! I will post an update as soon as I hear anything. Thank you for your support, prayers and positive vibes! :2thumbsup; :grouphug;
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:yahoo; Susan, what wonderful news. I will pray that everything goes well for Jaclyn and will keep your family my thoughts. Donors are angels. :cuddle;
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Oh that's just fabulous!! Thank you for letting us know! I got on my knees just now and said a prayer for Jaclyn, for you and for the donor and his family. Best wishes for a good surgery and a speedy recovery!
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Fantastic! :flower; :cheer: :flower; :cheer: :flower;
I am thinking positive thoughts for your family, and wishing your daughter a quick and painless transition to her dialysis-free life (long may it continue!) And of course, I hope the donor family can find peace and healing through their generous act.
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:bandance;
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Thanks for keeping us informed. Thinking of you all.
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:cheer: this is great news :cheer: Can't wait for the updates! :cuddle;
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will keep you and your HERO's family in my prayers :grouphug; :grouphug; :bandance; :bandance; :cheer:
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Praise God for the donor's family to give such an amazing life saving gift. I pray for the surgeon's hands and for Jaclyn's body to accept this new kidney as its own. Independence for years and years to come!
Keep us posted! :cheer:
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fantastic. what a wonderful celebration for the 4th :cheer: :cheer:
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What terrific news on such a perfect day for it. I hope all goes smoothly and the kidney works immediately! :cheer:
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:2thumbsup; What a lovely story, the selfless generosity of the donor's family and the great news for Jaclyn, you and your family. I will pray for you all. :grouphug;
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I am adding my prayers to the circle..
Oh baby girl Jaclyn, hoping it's the best possible outcome
for you. Thank you Dear Lord for the generosity of the
doner's family and that his family has peace of mind knowing
that his passing was not in vain.
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Oh wow!!! What an Independence day for you to celebrate!!!!
What wonderful news! I hope this kidney lasts for years and years and years.. What fantastic news!!!!
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Great news! I do hope everything is well!
Please keep us posted, kind regards and good luck from Kristina.
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:yahoo; Wonderful news.
Wishing Jaclyn a speedy recovery. :cuddle;
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Any news yet? I can't wait to hear that Jaclyn's recovering comfortably in a private room! God Bless the donor's family. What a wonderful gift. :clap;
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Great news!! I hope all is well :thumbup;
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I'm so happy for your family. Praying for a quick recovery.
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Awesomeful news1 :yahoo;
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:2thumbsup; Jaclyn is loving her new kidney and her new kidney is loving her! God bless her kidney hero and his family. Thank you for all of your support. Life is good! :grouphug;
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:cuddle; Jaclyn :cuddle; Bless her donor and please keep us updated. :cuddle;
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glad things are going well :grouphug; :grouphug; :grouphug; :flower;
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:bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance;
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:yahoo; I am so happy for all of you!
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Thought I responded last night to this, but anyway, Congrats to her for getting a transplant.
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:flower; Good to hear the update! Sending lots of love and hugs!! :grouphug;
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... what okarol said....
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Waiting for the happy "pee shot" (Tamara started the trend!! :D )
So very very happy for the young lady! Every time I hear of an IHD transplant I am filled with such hope and happiness for them (yes and a tinge of 'when's my call?')....
So glad the kidney loves her and is working already(that's what I take that to mean!).. AWESOME!!!
freedom from Dialysis. What more could you want on July 4th?!! :bow; :yahoo;
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Oh, Susan,
Tears of joy for you and Jaclyn and your whole family! This is such wonderful news.
Aleta
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:clap; :2thumbsup; :bow; :flower; :cheer: :bandance;
This is such good news.
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:yahoo; :clap;
Excellent news to read :thumbup;
Praying all stays well and the kidney lasts a lifetime.
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What wonderful news. You will all be in my prayers. Also, the family who so graciously gave this gift in the midst of their own grief. We are all thrilled for your family. :2thumbsup;
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Always great to hear some one gets off dialysis...God Bless the Donor's family!!! May it last years to come.. Hope many more get "that call" :clap;
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Here's an update from Jaclyn's aunt on facebook:
Karen Becker Hillers says " Happy 4th of July to Jaclyn! She received a new kidney! Freedom from Dialysis! She's up and walking around the hospital looking for the closest Subway! Miracles of Medicine! Now the kid can be a kid again! Keep Smiling! I Love You! Aunt Karen"
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SO COOL!!!!!!!
Congrats and may she enjoy being a kid......
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What wonderful news!!!...
Congratulations!... :yahoo;
My God bless and protect her...
Thoughts and prayers for the donor's family... Thank you for your bravery and compassion in donating your precious loved ones organs... May you be rewarded a thousand fold... :flower;
Love to all...
Darth...
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That's awesome. Hopes everything goes ok. Can't wait to hear back from you. It's like the process of entering a new world ! :thumbup;
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This is wonderful news. I am so happy that little darling of yours got what she needed.
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Any updates?
Wonder if she will get out as soon as Jess will post tx.
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Jaclyn's creatinine was 1.3 on Monday, 1.1 on Tuesday. She ate pizza yesterday and power walked around the hospital today. :~) She had a frosty and fries and was in heaven on earth. God bless organ donors. Jaclyn is scheduled to leave the hospital on Friday and we will be staying at the Ronald McDonald house in Palo Alto, CA for 3-4 months. Life is good (GREAT!) Never give up.
:yahoo; :yahoo; :yahoo; :2thumbsup; :2thumbsup; :2thumbsup; :grouphug;
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:flower; I am so happy for Jaclyn!
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This is awesome news! I hope you all can get out and enjoy the Bay area a little during her stay. I worked in downtown Palo Alto for 3 1/2 years.
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That's great, but what did she really think of the hospital's pizza taste? :rofl; :rofl;
Staying there 3 to 4 months, that's a long time to be away from home.
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Jaclyn was discharged from the hospital yesterday, Friday, 7/10. If anyone is struggling with what to send a kidney transplant recipient while recovering, her 3 favorite gifts while inpatient were....
Ghiradelli chocolate
Round Table Pizza
Bottle of Dr. Pepper
We are a walking pharmacy. She is on the following meds:
Prograf 6mg at 8am and 8pm
Cellcept 500 mg at 8am and 8pm
aspirin 81 mg at 8am
Pepcid 20mg at 8am and 8pm
Valcyte 450 mg at 8am
Norvasc 5 mg at 8am
Magnesium plus protein 133 mg at 8am and 8pm
Cipro 500 mg at 8am and 8pm
Vicodin 500 mg as needed (1 yesterday, 0 today...so far)
No steroids. :~)
The past 6 days have been overwhelming! I have never seen so many people come into a hospital room to check out urine! Pee, wonder pee! One after another, "You need to see Jaclyn's perfect pee" :cheer:
Then, she was not allowed to have water or ice chips until she passed gas. I thought we would have to hire a stunt pooter to pass gas to get Jaclyn ice chips, but it finally came and the docs and entire staff were ecstatic! :cheer:
Last, Jaclyn could not leave the hospital until she had a bowel movement. Wow! :yahoo; too much excitement when that occurred. Its all about the pee, poots and poo. :clap;
We are staying at Ronald McDonald house. She has met a couple of new friends, 15 yr old Jessica who received a kidney 5 weeks ago and doing great and 14 year old Tatiana who received a heart transplant 6 weeks ago. The kids here are fighters, very supportive group.
Life is GREAT. Never give up.
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:clap; Susan, wonderful news indeed. Give Jaclyn a hug from me. :cuddle;
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What wonderful news! :yahoo;
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:bandance; :bandance; :bandance; :bandance;
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:yahoo; I am so happy for Jaclyn!
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Fabulous!! :yahoo;
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Oh, Susan,
You must be on cloud nine. Wonderful, wonderful, wonderful. :bandance; :cheer: :bandance; :cheer:
Keep sending good news.
Aleta
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Lovely to share your good news :yahoo;
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I have tears of happiness reading these updates. Jaclyn and Jess (the two J's!!) both getting kidneys within days of eachother and both doing so well.. two beautiful young ladies getting another look at a more normal life. It so gives me hope for everyone and helps me be more positive about my own life and waiting for that call!!!
pizza! dr pepper!! WOOHOOO!! :clap; :clap; :clap; :yahoo; :yahoo; :yahoo; :rofl;
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WONDERFUL NEWS!!!
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:clap; :clap; :yahoo; :yahoo;
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Outstanding news. Congratulations to both of you! :bandance;
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:flower; Super Fantastic!!! What an inspiration she is! Give her a big hug for us!!! :flower;
Oh yea, so thankful she isn't on steriods!
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Fantastic update. Thanks, it is so great to read good news. :grouphug;
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:2thumbsup; :yahoo; :bandance; Yay, I'm glad she's doing so well! I got out the same day as her, but I am on more meds..I have steroids. And pizza, well pizza I haven't had yet but I did get a baked potato the day after I got out. OMG. I just can't wait til French onion soup. but I did have a dr. pepper tonite like her! :beer1;
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French Onion does sound good right now.
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Jaclyn gets a Zenopax infusion tomorrow. She gets these infusions every other week instead of Prednisone steroids.
From Drugs.com:
Zenapax is a monoclonal antibody and immunosuppressive agent. It works by blocking the activation of the immune system, which decreases the risk of the body rejecting a transplanted organ.
Jaclyn's lab results today: Creatinine 1.0 and BUN 21.....Good Kidney! She is drinking 3.5 liters of fluids each day. Doctor says that "A juicy kidney is a happy kidney" :2thumbsup;
Life is good. We are forever grateful. :flower;
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:bandance; :bandance; :yahoo; :yahoo; :beer1; :beer1; :clap; :clap;
yea...those sum it up!
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:2thumbsup; :2thumbsup; :2thumbsup; great numbers!
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She's drinking 3.5L a day.. is that a doctors order, or just what she's doing? What if she wants to drink MORE?
I understand during longer term dialysis the bladder shrinks due to reduced fluid intake(if you're good :) ) and it's very hard for some people post transplant to actually drink lots because their bladder fills up very quickly - and it has to expand again over time to get used to all the extra fluid.
Hell I wouldn't mind if that was my biggest problem in life. Hand me another 1L bottle of chilled water please!!! *drool*
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:bandance; Awesome!
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RichadMel, 3.5 L is the new minimum standard my transplant center wants us to folow for fluid intake. When I had my tx, the standard at the time was just 2L which I still have trouble getting in, but even though I have the bladder problem, I have other problemsthat makes it hard to drink and eat.
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wow.. I DREAM of drinking 3.5L a day! :) I hope I am able to whenever the time comes!!! My fridge is groaning to hold 2L bottles of cold water again :)(
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wow.. I DREAM of drinking 3.5L a day! :) I hope I am able to whenever the time comes!!! My fridge is groaning to hold 2L bottles of cold water again :)(
I hope your fridge gets that chance soon.
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I am hoping that this is just a bump in the road to a forever healthy kidney and happy kid.
Has anyone experienced issues with Prograf absorption. A week ago Jaclyns prograf intake was 11 mg morning and night without anything to drink or eat an hour prior or after. Her prograf lab results were approx 8 after 12 hours. The docs wanted it to be in the 10-12 level range. So they added a new med. I don't have the bottle with me, but it was Fluconasol(???), an anti-fungal med, but in this case not used for fungi, it was prescribed to help the prograf absorption. After one dose, Jaclyn's prograf lab show a level of 16.7. The docs quickly eliminated that med. On the next blood test Jaclyn's creatinine had gone from 1.0 to 1.8 (ugh!). The first thought was that the increased prograf level constricted the kidney vessels causing the creatinine to spike. They got the prograf back to normal and creatinine decreased to 1.2 within 48 hours. However, it start creeping back up again, 1.3 then 1.4. Since it went the wrong direction, they decided to perform Jaclyn's 3 month biopsy at 7 weeks. Results will be available tomorrow.
Some of the kids at the Ronald McDonald House where we were staying prior to being re-admitted take their prograf and cellcept alone and take their other meds later. Some of the other parents say that takin g all of the meds together impacts the absorption of the prograf. The interesting thing is that all of these kids are monitored by the same team of doctors. Has anyone else on this board had issues with prograf absorption or does anyone know if it is better absorped taken alone. Jaclyn does take it on an empty stomach. I think if we can stabilize and absorp the prograf then the creatinine issue may resolve itself.
Any input is great appreciated. Sorry if this blog is confusing and dificult to read as I don't get much sleep when Jaclyn is in the hospital.
:pray;
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I never had that problem like that. Mine have all been due to the time the blood was taken and how much fluid I am not getting in.
Is she drinking caffinated products? I am told by my center that can have an efect along with raising bp due to constriction caffiene can cause. Other thing that comes to mind is what is she drinking and what is her other levels like such as Potassium and Phosphorus. After my transplant I was told I should drink Gatoraid to get fluids in, but later told I should not fue to lab results of raise Creat, Potassium, and Phosphorus.
Not sure how Prograf level is determine. I was told before, but have forgotten. Mine is kept at a 5 - 8 range, but my age, height, and weight is different also.
So maybe something is being overlooked that is not med related, but food related. Did they tell you not to drink prior to test? I also take all my meds at once except for meds specifically saying so such as Actonel (30 min prior to other meds) that is how my center has had me take them since transplant in 2000. Maybe kids are different depending on age?
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Susan, From what I can gather by scanning the web, the Prograf dosing regimen for kids with renal transplants is not well developed.
Hopefully they will continue to watch her trough levels closely until they get her numbers stabilized.
I hope that you can find time to get some sleep. I know that's difficult for the caregiver! :cuddle;
Here are a few of the things I found:
http://www.rxlist.com/prograf-drug.htm (http://www.rxlist.com/prograf-drug.htm) (which is lifted from the manufacturer)
"Pediatric Patients
Pediatric liver transplantation patients without pre-existing renal or hepatic dysfunction have required and tolerated higher doses than adults to achieve similar blood concentrations. Therefore, it is recommended that therapy be initiated in pediatric patients at a starting IV dose of 0.03-0.05 mg/kg/day and a starting oral dose of 0.15-0.20 mg/kg/day. Dose adjustments may be required. Experience in pediatric kidney and heart transplantation patients is limited."
The manufacturer's site has a lot more info, but it seems to say basically the same thing.
Click http://www.astellas.us/docs/prograf.pdf (http://www.astellas.us/docs/prograf.pdf) to download the pdf with details. The manufacturer doesn't have dosing recommendations for pediatric kidney transplant patients. There was a study done is with pediatric liver transplant patients.
There's a long list of drugs that can increase tacrolimus levels in blood, including fluconazole.
This article may also be of interest as it highlights the issues concerning bioavailability (uptake into bloodstream from the stomach or intestines).
http://www.medicalnewstoday.com/articles/99273.php (http://www.medicalnewstoday.com/articles/99273.php)
Looks like there may be a newer, related drug on the market that will give prograf a little competition.
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Thanks for the input! The biopsy indicated perfectly healthy kidney. She is taking a high dose of prograf twice a day, 10.5 mg each dose. She was released tonight after a blood transfusion. Her hemoglobin and hemotocrit had been very low for several weeks and the iron was not helping. Hopefully, this blood boost will do the trick.
Although she was released she will be back to the hospital this week for another blood test, stint removal, clinic appointment and zenapax infusion, but it is good to be on the outside for a bit.
Thank you for your input. I learn something new each time I sign onto this board. Thank you for your support. :grouphug;
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:) Whew! I am happy the kidney is okay - hopefully her levels will stabilize soon and you all can relax a bit! :cuddle;
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Caring thoughts and prayers with you all the way. :grouphug;
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10.5mg a dose?? wow...
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10.5mg a dose?? wow...
Yeah that is one of the highest I have seen.
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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. :cuddle;
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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 1.8) 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. :pray;
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:pray; I hope things improve for Jaclyn. Thanks for keeping us informed. :cuddle;
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Seems like good news. :thumbup; hugs :cuddle;
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Hugs, Susan.
:cuddle; :grouphug;
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Hope all goes well. She is so lucky to have you for a Mom watching out for her. Prayers and hugs.
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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. :pray;
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. :grouphug; :thx;
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Oh, Susan.
What a terrible time you have had...
I wish there were something besides good wishes that I could do.
:grouphug;
Aleta
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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. :grouphug;
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Yes Susan the story is sad..... I wish for better days for you ..... and your daughters....
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Sorry to hear what is happening and I hope you find another facility who can take better care of Jaclyn.
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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!!!
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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?
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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. :grouphug;
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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.
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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. :thx;
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. :grouphug; 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. :stressed;
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.
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Lordy lordy what a battle! Thinking of you all.
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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. :cuddle;
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Wonderful news :clap;
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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. :banghead; 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 :puke;. 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. :pray;
Thanks again for letting me vent.
Susan, mom of Jaclyn
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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.
:grouphug; :cuddle; :grouphug;
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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?
:grouphug; :grouphug; :grouphug;
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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.
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:grouphug; Hugs :grouphug;
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 :grouphug; :grouphug; :grouphug;
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Sending my prayers to Jaclyn, You and the rest of your family.