Victoria Female Brooklyn, NY United States: Like

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Liver Transplants

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To win, or to give up the fight...

Started this discussion. Last reply by Kim Sep 30, 2011. 7 Replies 0 Likes

Well, a lot has been going through my mind these last few days. For starters, I didn't get the medical clearance that I need for my transplant. The right side of my heart still has a significant…Continue

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Cisco left a comment for Victoria

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

yesterday

David left a comment for Victoria

" Happy Birthday Victoria ! "

yesterday

Paul and Victoria are now friends

Mar 18

ebear63 commented on Victoria's blog post 'Intro...'

" "

Oct 23, 2011

Anna left a comment for Victoria

"Hi Victoria! Thank you for the friend request. How are you doing these days? I hope that you are feeling better! Be well, Anna"

Oct 2, 2011

Kim replied to Victoria's discussion 'To win, or to give up the fight...'

"My heart goes out to you. And it is a big decision you have to make, and in the end you have to be the one that makes the decision. I haven't had a liver transplant, however, I have had two kidney transplants. I have had to deal with…"

Sep 30, 2011

Gilly replied to Victoria's discussion 'To win, or to give up the fight...'

"Victoria, Everything you said, I said to myself over and over again, even 12 weeks after the transplant. Its now a year later and yes i take meds and go back to the clinic every 3 months, but yes it has been worth it. Every day i see my family…"

Sep 26, 2011

DebbieK replied to Victoria's discussion 'To win, or to give up the fight...'

"It is a hard journey. Keep the faith and hope alive and you will have a much better life. It wil be worth it. I am a few months out from a double lung transplant and have had quite a few bumps in the road but they figure it out and it is worth…"

Sep 24, 2011

Julie left a comment for Victoria

"Hey Victoria, welcome to Transplant Friends! I hope you find this website and connection to the community helpful. I'm sorry to hear about your health issues going on, just try to keep your head up and keep smiling. Mental health…"

Sep 14, 2011

A.J. replied to Victoria's discussion 'To win, or to give up the fight...'

"Victoria, I can feel the the total frustration, hopelessness and feeling of having no control that you expressed in your letter. I was in your shoes a couple years ago and I remember it so well. Many times I wanted it all to just end, I…"

Sep 8, 2011

Stevep commented on Victoria's blog post 'More from the beginning...'

"What is your latest status? Are you on a transplant list? Have you taken and passed all the necessary medical tests to be placed on a list? What is your current MELD score? Have the Doctors given you any time line? Be…"

Sep 8, 2011

Rita replied to Victoria's discussion 'To win, or to give up the fight...'

"Hi Victoria, I read everything you wrote and I can hear your anger and frustration. I can't say I have ever walked in your shoes but I have felt my own anger and frustrations with waiting, meds, being ill and wanting the rainbow to come. I am…"

Sep 3, 2011

Linda M left a comment for Victoria

"Hi Victoria, well if you can just get your clearance it looks like your set to go. Being a RN, I know alot about all the tangles and risks of surgery. Luckily my PA pressure is only between 36 and 42. Have they tried any drugs for…"

Sep 2, 2011

Hostess Rise' replied to Victoria's discussion 'To win, or to give up the fight...'

"Hi Victoria I just read your blog and hear every word loud and clear. I am glad that you were able to share your thougths and feelings as many people in your situation will grow into their depression and not say a word. I had two…"

Sep 2, 2011

Cathy left a comment for Victoria

"Keep Your Faith As Everything Will Fall Into Place. Praying you receive The Gift Of Life Very Soon!! The road of waiting to me was a true learning and as you I helped others to not fear to learn and be strong... I just had my 3rd year…"

Sep 2, 2011

Victoria liked Victoria's profile

Sep 1, 2011

Profile Information

Are you a member of http://TransplantBuddies.com ?: Yes

Where did you hear about Transplant Friends?: National Foundation for Transplants

Share why you had to have a transplant.: Cryptogenic Cirrhosis w/Pulmonary Arterial Hypertension

Which Organ(s) did you receive? If you are on the waiting list, please share.: none

I am Interested in Transplant Friends because...: Educating the public on liver disease, share my story with others, get inspiration from others who have went through Liver transplantation and advice on how life will be like after transplant. Educating myself more about my illness.

Which Transplant Center has or will perform your life saving surgery?: Mount Sinai Recanti/Miller Transplantation Center

How has transplantation changed your life? If Yes, please share.: I am unable to do anything that I used to do, my whole life is put on pause due to getting my health better. I get chronic back pains, due to the 40" circumference of my belly (measured around bellybutton), chronic itching, horrible side effects from alot of medication, can't walk more than 5 blocks, can't get any medical procedures cause I don't have medical clearance due to my Pulmonary Arterial Hypertension (PAH), family/friends constantly worry about my health, disabled for the last 4-5 yrs, swollen feet/ankles, blackouts (one was as long as 12 hrs), lethargy, nausea, Huge Spleen (Spleenomegaly)

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Victoria's Blog

NFT new Patient

Posted on September 1, 2011 at 9:52am 0 Comments 0 Likes

Hey...I'm now an official patient fundraising on NFT's website, the link is: www.transplants.org/donate/victoriasantiago If anyone wishes to donate in my honor, it would be MUCH appreciated! Every dollar counts! Also, if you can please share this link w/your friends via facebook/twitter/emails to help spread the word, I would be very grateful!

I will be holding a fundrasing event probably sometime early next…

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My website

Posted on September 1, 2011 at 8:39am 0 Comments 0 Likes

I had created my own blog a while back, I just discovered this forum, so, I may copy my blogs and add them to this site, however, for those who wish to read all the blogs now, you can view them at www.pre-livertransplantjitters.blogspot.com Thanks! Please send me invitations for friends!

More from the beginning...

Posted on September 1, 2011 at 8:28am 1 Comment 0 Likes

Just to let everyone know, these are blogs that are already posted at my blog

Well...even though my intro looks fine & dandy, I've gotten a lot of compliments on this site (thanks 2 u all!), but I'm gonna start from when it started..it came from a bit of thinking WAY back on a time when I didn't know what Cryptogenic Cirrhosis was...someone I sent a message to who's read my blog, as…

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Intro...

Posted on September 1, 2011 at 8:24am 1 Comment 0 Likes

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Comment Wall (8 comments)

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At 7:54am on May 29, 2012, Cisco said…: Happy birthday Victoria! 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 5:42am on May 29, 2012, David said…: Happy Birthday Victoria !

At 7:31pm on October 2, 2011, Anna said…: Hi Victoria! Thank you for the friend request. How are you doing these days? I hope that you are feeling better!

Be well,

Anna

At 9:29am on September 14, 2011, Julie said…: Hey Victoria, welcome to Transplant Friends! I hope you find this website and connection to the community helpful. I'm sorry to hear about your health issues going on, just try to keep your head up and keep smiling. Mental health can take your physical health a long way! I had a liver transplant over 10 years ago when I was just 12 years old. I was really lucky and fortunate, I had acute liver failure and did not have much time to wait and got a liver very quickly. If you have any questions for me please feel free to ask, I can answer as best I can. Good luck and wish you well!

At 2:28pm on September 2, 2011, Linda M said…: Hi Victoria, well if you can just get your clearance it looks like your set to go. Being a RN, I know alot about all the tangles and risks of surgery. Luckily my PA pressure is only between 36 and 42. Have they tried any drugs for you to help bring that pressure down? I guess its a good thing your meld is only at 12, but in many cases there can be a huge difference in how we actually feel and our meld scores. Its good you have a living donor since these days a meld of 12 would not get you the call you need for transplant, at least in most hospitals. It used to be lower, but so many more are waiting and lifestyles of the donors have also caused some problems with the organs available.

Bainbridge Island is on the other side of Seattle from here, but I have to say, Island life is pretty nice. Slower paced and these days I move much slower. Take Care. LindaMRN

At 10:18am on September 2, 2011, Cathy said…: Keep Your Faith As Everything Will Fall Into Place. Praying you receive The Gift Of Life Very Soon!! The road of waiting to me was a true learning and as you I helped others to not fear to learn and be strong... I just had my 3rd year Liver Anniversary. No family member said a word know other person except for you or I can understand this journey we are living know one other than us can know or pain. Your not alone as you see by joining this webpage and when your @ your transplant center. Blessings to you <3 Cathy

At 7:24pm on September 1, 2011, Linda M said…: Hi Victoria, thanks for the invite. I know all about waiting for a donor/organ as I have been listed for 4 years now. I also have stage 4 cirrhosis. Doing my best to hang in there. Money, unfortunately is usually and issue for many of us. Have you tried to get SSDI (social security disability insurance?) After two years you are able to get Medicare, which does cover transplant for the most part. That is of course unless the government takes it all away from us. It would depend on how long you have lived in the U.S. and work history.. What ever the case may be for you, I wish the best of luck with your fund raiser. Keep in touch and take care.

LindaMRN