About Me

Were you a member of our Forum on http://TransplantBuddies.com

No


Where did you hear about Transplant Friends?

Internet


Are You Male or Female?

Female


Share - which illness led up to you needing a transplant?

I didn't have a transplant, my daughter had it. She was diagnosed with End Stage Renal Failure and the finally, a very rare genetic disorder called Joubert-Nephronophthisis.


Which Organ(s) did you receive? If you are on the waiting list, please share.

Kidney


Drugs, vitamins, favorite foods

Prograf, Cellcept, Protonix My daughter loves hamburgers


How many years have you had your Transplant for?

She has had it for 6 years


I am Interested in Transplant Friends because...

I would like to "meet" others in an open forum to discuss any issues related to my daughter's transplant. Sometimes I feel like I am all alone in this....we receive no supports where we live.


Which Transplant Center has or will perform your life saving surgery?

Jackson Memorial Hospital/University of Miami


Share how your transplant experience changed your life?

My daughter's health improved vastly and she can do more. Prior to the transplant she was lethargic and every body system was failing.


Share whatever information you want us to know about you

I am not only my daughter's mother, I am also her primary caretaker and legal guardian. The diagnosis my daughter received prior to her kidney transplant was devastating. It has been and is quite difficult to find supports and/or care where we currently live. My daughter also has Autism on top of everything else going on in her young life and, this has complicated her care significantly. I try to do research on my own to find good options for my daughter's care but, sometimes this can become quite overwhelming.


Share your interests and hobbies

I am a professional artist and amateur writer. I love to collect antique porcelain, jewelry, travel, and read. I make jewelry in my spare time and am currently writing two books.


What Part of The World Do you Live? Feel free to share city, state, country

South West Florida


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Comments

  • Hello Susan, your daughter is in my prayers, hang in there love, God bless always
  • Greetings and Welcome to Transplants Friends, Susan. And try to join us in the chat room Saturdays and Sundays at 3 pm EST / 12pm PST. Take care.  Be sure to post the titleof yours books here on transplant friends.

  • Hi Susan

    Welcome to Transplant Friends and I hope you are both well.

  • Hi Rise!  Thanks for the welcome and the nice comment.  So glad to "meet" someone else from Florida that was also transplanted at Jackson.  I do have lots of questions for you regarding your experience at Jackson/University of Miami.  Not sure how to go about asking you and stay within the requirements of this website?  Thanks -- Susan :)

  • Hi Susan

    Welcome to Transplant Friends! So glad that you joined us today. What a great profile- I too was txed at JMH.

    Be well and give my best to your daughter!

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