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silverninja66 added a discussion to the group Prograf
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gums bleeding/swollen/red

My son is one year out from his bowel transplant, taking 1mg in the am and 1/2mg in pm with his levels coming out to be 3-5, which is his goal. Totally off prednisone. Just last week he started with excessive drooling, bad breath and red, swollen gums. Last two days his gums are now bleeding and so swollen you can barely see his teeth.  We're headed to clinic tomorrow but wondering if anyone else has had this side effect and if so what the treatment included and how long it took to resolve?…See More
Jun 20, 2012
silverninja66 added a discussion to the group Dental Care
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Gum swelling/redness/bleeding

My son is one year out from his bowel transplant and up until this point has really had no major side effects from meds. This past week however, he's started with excessive drooling, bad breath, gums red and swollen to the point of barely being able to see his teeth, low grade fever and bleeding gums. His coordinator said they've only seen this in one other kid on prograf. We are headed to Pittsburgh clinic tomorrow... Just tryin to put some feelers out to see if anyone else has experienced the…See More
Jun 20, 2012
silverninja66 joined Hostess Risé's group
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Dental Care

Take care of your oral health. Share your thoughts and experiences.See More
Jun 20, 2012
Cisco left a comment for silverninja66
"Happy birthday silverninja66! Have a great day! You should join us for chat on Saturdays and Sundays starting at 2 pm CDT. Hope to see you there!"
Jun 6, 2012
silverninja66 joined Hostess Risé's group
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Prograf

If you are currently taking Prograf consider joining this group.See More
Feb 12, 2012
silverninja66 and Hostess Risé are now friends
Feb 12, 2012
cthelite left a comment for silverninja66
"Silver Ninja I am thrilled that a suitable donor blessed your son and your family. May your lil warrior enjoy many, many years of health and happiness. Godspeed. "
Jan 3, 2012
silverninja66 joined Hostess Risé's group
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Transplant No-No's

What has your transplant center advised you regarding transplant precautions regarding your new life?See More
Dec 1, 2011
silverninja66 commented on Hostess Risé's group 'Proud Parent'
"New to the site and I am the proud momma of a 2 year-old miracle named Vinnie... a kind family in Kentucky donated life to us in the form of new intestines for my son in May 2011.  They told me first winter after transplant might be a little…"
Dec 1, 2011
silverninja66 joined Hostess Risé's group
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Proud Parent

We all love to see photos of children. This group is for all the proud Moms, Dads and Grandparents out there. Please post along with your photos, your organ tx type and what transplant center your child/teen is being treated at."Kiss Baby" by JudithTo visit more of Judith's beautiful work http://www.raccoonridge.com/See More
Dec 1, 2011
Hostess Risé left a comment for silverninja66
"Hi Silver Ninja   Welcome to Transplant Friends! Thank you for sharing a detailed questionaire. This certainly helps others as well.   I am very happy for you all. God Bless your Donor family!   Thank you for joining Rise'"
Nov 30, 2011
silverninja66 is now a Friend of TransplantFriends.com
Nov 30, 2011

Profile Information

Were you a member of our Forum on http://TransplantBuddies.com ?
Yes
Where did you hear about Transplant Friends?
Transplant Buddies/facebook
Are You Male or Female?
Female
Share - which illness led up to you needing a transplant?
My son, Vinnie, was born at 29 weeks weighing 1 pound, 15 ounces. At a month old he developed a severe case of necrotizing enterocolitis and after undergoing 3 bowel resections in a 1 1/2 weeks, was deemed "short gut" with no large intestine left and only 1/3 of his small remaining. He was TPN dependent and developed liver disease from that.
Which Organ(s) did you receive? If you are on the waiting list, please share.
We waited for a year until a kind family from Kentucky opted to share their 4 month old baby's intestines. We didn't know until the actual transplant surgery whether or not Vinnie needed the liver too... but turned out he didn't! 11 hour surgery at the Children's Hospital in Pittsburgh - small and large bowel transplant on 5/4/11. Vinnie was 17 months old at the time.
Drugs, vitamins, favorite foods
Transplant meds as of now are Prograf 1 mg every morning and alternating 0.5/1mg every evening, Prednisone 2.5 mg every other day! Also on Immodium 3 mg twice a day, multivitamin twice a day, iron twice a day, bactrim 30 mg 3 times/week, sodium bicarbonate 600 mg once a day, 1/4 baby aspirin once daily, fludrocortisone 0.01mg once daily, Neupogen 45 mcg once a week
How many years have you had your Transplant for?
7 months!
I am Interested in Transplant Friends because...
There's no support than the support you get from other's who have lived in your shoes! Race, gender, class, whatever - it doesn't matter - if you've lived through the transplant process you've gained a certain insight that other's will never know. I hope to give my son as normal a life as possible and tap into as many resources as possible for him and our family!
Which Transplant Center has or will perform your life saving surgery?
Children's Hospital of Pittsburgh, PA
Share how your transplant experience changed your life?
It was obviously life-saving for my son. Getting the bowel transplant early on in his life stopped his liver disease as well as gave him a chance to actually grow and gain weight... and reach milestones! The families we've met along the way have been instrumental in changing our lives as well, sharing in their joys and agonies, seeing some transplant friends not live through the journey :( we are just so OVERJOYED that our son received his gift and is doing so well.

Comment Wall (4 comments)

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At 2:34am on June 6, 2013, David said…

 Happy Birthday Silver ! 

At 8:27am on June 6, 2012, Cisco said…

Happy birthday silverninja66! Have a great day! You should join us for chat on Saturdays and Sundays starting at 2 pm CDT. Hope to see you there!

At 12:20am on January 3, 2012, cthelite said…

Silver Ninja

I am thrilled that a suitable donor blessed your son and your family. May your lil warrior enjoy many, many years of health and happiness. Godspeed. 

At 10:16pm on November 30, 2011, Hostess Risé said…

Hi Silver Ninja

 

Welcome to Transplant Friends! Thank you for sharing a detailed questionaire.

This certainly helps others as well.

 

I am very happy for you all. God Bless your Donor family!

 

Thank you for joining

Rise'

 
 
 

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