"Dottie,
If your doc write BS/BS and specifies that you need prograf, not a generic med, they will back down. It's up to a doc to decide. All generic meds aren't the same as the name brand. At MGH they prefer prograf, although they said…"
My uncle Victor, Transplant Cafe & my 12th transplant anniversary..
I never really celebrate my txp. anniversary, but I think it's time to start now! Exactly 12 years ago, I had my life saving liver transplant after a severe reaction to a thyroid medication. Tonight I will go celebrate with my youngest sister who is always in charge of the party department each time I visit my family in Puerto Rico. Well, we're actually celebrating that it is Friday, but I'll throw in my anniversary into the mix!
Also, I want to tell you about one of my favorite people, my uncle Victor who died last month in Puerto Rico where I am now. Although I wasn't going to write a blog post about it, Holly helped me see that it was a good idea to tell the cafe a little about him and his life.
The thing is that although he likely left this world believing that he didn't make much of a difference on the world and may have felt that he didn't accomplish much in his own life, he is actually, in huge part, the reason Transplant Cafe exist. As a very young child while I was still living in Puerto Rico, uncle Victor (or as I called him 'Tio Victor') literally blew my mind each time I visited him with amazing concepts of human potential. Concepts and education which at that age (9-13) were truly paradigm shifting for me. He was a well read, self educated man who never had any children of his own, to whom I seemed to fill that role.
He would talk to me about authors like Napoleon Hill and his book "Think and Grow Rich" which is about much more than just making a bunch of money, as well as politics and economics and personal growth and empowerment. He would say things like "the human mind will always be much more powerful, able and important than the most powerful and largest computer man could ever create" and so on.
And at that age that was, at least to me, an amazing education that I wasn't getting from any other person or institution. He definitely paved the way for the type of mindset that I personally needed to trust my own abilities and get passed my own limitations and actually pursue an endeavor such as Transplant Cafe and other great things happening in my life.
So as I sensed that my uncle was in his last days I did get a chance to tell him that his advice, bigger-than-life concepts, books and guidance made a difference to me and the lives of many. And, I thought it would be good to let you, the members of the cafe, know about him as well.
Today, I am humbled to receive messages on my page and email center of members telling me how much this site has touched and affected them positively. Really, notes and messages that I never thought I would be part of anything that would motivate others to write such heartfelt thoughts and thank you's to me. So, thank you as well for making the cafe your community and for helping me bid goodbye to my uncle Victor, literally the reason that the idea of TransplantCafe.com was acted upon and brought about.
Nelson
Also, I want to tell you about one of my favorite people, my uncle Victor who died last month in Puerto Rico where I am now. Although I wasn't going to write a blog post about it, Holly helped me see that it was a good idea to tell the cafe a little about him and his life.
The thing is that although he likely left this world believing that he didn't make much of a difference on the world and may have felt that he didn't accomplish much in his own life, he is actually, in huge part, the reason Transplant Cafe exist. As a very young child while I was still living in Puerto Rico, uncle Victor (or as I called him 'Tio Victor') literally blew my mind each time I visited him with amazing concepts of human potential. Concepts and education which at that age (9-13) were truly paradigm shifting for me. He was a well read, self educated man who never had any children of his own, to whom I seemed to fill that role.
He would talk to me about authors like Napoleon Hill and his book "Think and Grow Rich" which is about much more than just making a bunch of money, as well as politics and economics and personal growth and empowerment. He would say things like "the human mind will always be much more powerful, able and important than the most powerful and largest computer man could ever create" and so on.
And at that age that was, at least to me, an amazing education that I wasn't getting from any other person or institution. He definitely paved the way for the type of mindset that I personally needed to trust my own abilities and get passed my own limitations and actually pursue an endeavor such as Transplant Cafe and other great things happening in my life.
So as I sensed that my uncle was in his last days I did get a chance to tell him that his advice, bigger-than-life concepts, books and guidance made a difference to me and the lives of many. And, I thought it would be good to let you, the members of the cafe, know about him as well.
Today, I am humbled to receive messages on my page and email center of members telling me how much this site has touched and affected them positively. Really, notes and messages that I never thought I would be part of anything that would motivate others to write such heartfelt thoughts and thank you's to me. So, thank you as well for making the cafe your community and for helping me bid goodbye to my uncle Victor, literally the reason that the idea of TransplantCafe.com was acted upon and brought about.
Nelson
Comment
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Comment by Kathryn Flynn on March 28, 2010 at 10:11am -
Nelson- what a great story! And happy belated transplant cafe. This is a truly amazing site to go to. Celebrate away- it is all about living and you are doing a great job with your gift. Your uncle sounds amazing. I am happy to hear you had the opportunity to tell him how you felt.
Kathryn
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Comment by Anne Kirchmier on March 9, 2010 at 9:04pm -
Dear Nelson, Thank you for sharing your story about your Uncle Victor. I am truly sorry for your loss. Take care, AnneK from Va.
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Comment by Isidoritarc on March 7, 2010 at 8:03am -
Eres afortunado por haber tenido en ésta vida la oportunidad de compartir e internalizar como propias algunas ideas y enseñanzas de Victor, "Tío Victor".
Mis cariños para ti, lamento la perdida, pero claramente te dejo algo muy valioso.
Marcela
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Comment by Alan Anderson on March 6, 2010 at 10:51am -
Congrats Nelson,
Each year you have your transplant is worth celebrating, never forget that. WE are blessed that we have recieved this gift that lets us continue on with our lives. I am sorry to hear about your Uncle Victor, I can tell he meant a lot to you. My Uncle Knobby & Aunt Geri were important to me and I spent a lot of time with them in my youth. I still keep in touch with my uncle and hope to see him this month when I am in PA visiting my mom. Like most of us who have gone thru tough times my mother has been there for me all of the time. I am from a big family and all of my brothers and sisters are planing to visit with this month at the same time because we have been told she may not be with us much longer and we all want to be together with her at least one more time. Even though my family live far from me they are one of the main reason I have had such a sucessful transplant. I thank you very much for creating this website because I know is has hepled all of us who are dealing with organ failure and transplatation.
Take Care & God Bless,
Alan
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Comment by TransplantCafe.com on March 6, 2010 at 10:01am -
Thank you all for the nice comments. We have some exciting things we're working on to make this site more exciting, interactive and of greater service to the transplant community. Yes, I agree that uncle Victor is proud and thanks again for the idea to tell the cafe about it..glad I did!
ps; Liversary celebrations were awesome!
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Comment by Bobbiejo Winfrey on March 6, 2010 at 6:27am -
Dear Nelson,
Congratulations on reaching your 12 year transplant anniversary! I am so glad that you had such an inspiring and motivating person in your life who taught you so much so that now his influence has blessed not only you but so many others who have benefited from this forum that you created. I am so grateful to you for building upon his foundations that he instilled in you such that this site has come to be. The fruits of your labor has provided a rich harvest, and I imagine will only continue to do so well into the future. I am so glad that I could be a part. Best of wishes.
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Comment by m. Joshua Morris on March 5, 2010 at 6:53pm -
i am sure Tio Victor was prouder of you than you will ever know... and in some way guiding you still with his influence. i am glad you were the type of kid that listened and admired him. other kids perhaps would find the wisdom and common sense stories too boring. This TC is now a trophy rewarded to Tio Victor!
Nelson again thank you for listening to your Tio and absorbing his vsion and creating the TC for us to use in learning about our transplants (pre and Post) and especially learning about ourselves and helping each other.
We at TC are a special tribe because of you. I am not a big anniversary type of person either but BRAVO to your 12th year and God Bless the donor's family too.
Lastly, BRAVO to Tio Victor ;-)
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Comment by Catherine (Cathy) on March 5, 2010 at 6:49pm -
Nice Blog 12 Years Great To Read
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Comment by Holly Werlein (Holdol) on March 5, 2010 at 5:58pm -
I'm SO proud of you Nelson :) Happy 12th "Liversary" too!! I'm glad that your booty is getting to celebrate with your family. Thank You Nelson for creating this amazing, support community and to your uncle & role model who helped shape your mindset. I'm blessed to be a part of this and we will continue to make a huge impact on the transplant world. Your uncle is very proud of you and so are all of us here at the Cafe :) Thanks for being an awesome person and for all you have done to make this place possible. Cheers from a far my man!
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Dottie welker commented on TransplantCafe.com's group Team Prograf"Hi All,
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Dottie welker joined TransplantCafe.com's group
Team Prograf
This is for those of us who take Prograf as a main immune suppressive drug. We can discuss side effects, etc. Or, we can just keep a head count of how many in the community take Prograf.
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