My Liver Disease Journey...

Just to give everyone a gist of what kind of a blog I'm trying to create here, it's basically for people who have been diagnosed with Liver Disease (Cirrhosis, Cancer, etc) and are awaiting a liver transplant. I am sharing my story (like an open book), and keeping this also as a 'journal' for what I am going through due to my illness and my life & past experiences.
My name is Victoria Santiago and in 2007, I was diagnosed as a Cirrhotic at the age of 26 yrs old; I am now 30 yrs old. This blog is for those who know what having liver disease is like; the Dr appt's, the freaking out when Dr's can sometimes be so cold & rude in telling you that you're probably going to die from this disease. I walked into my GI (Gastrointestinal) Dr's office, got a liver biopsy done because I noticed some distention in my belly and my AST, ALT & Alkaline Phosphotase came back irregular, which are all liver enzymes. I walked in to try to find out what the heck was going on, and he assured me a biopsy would give me that answer. For those who have had Liver Biopsy's...I feel your pain! It's awful to lay there on your side having a HUGE needle poked under or in between your ribs TWICE for a liver sample. Well, my results raised more questions than answers. It was determined by the pathologist that I had a transition to Cirrhosis, and was consistent with Chronic Hepatits C. However, my blood work shows, from 3 different lab's, that I was diagnosed with Hepatitis C, but I have no virus, the HCV test always come back as "insufficient or mutated virus" meaning that there is no Hepatitis C virus in my blood; I was even told that I can live a long and happy life without ever having it's effects. So I knew this pathologist made a mistake in that diagnosis, and future Dr's whom are liver specialists concurred. I went through a whole mess of 'liver specialists' for year's, seeking a specialist that would take my insurance, which were few & far between. Long story short (too late!lol), I just started going to Mt. Sinai Recanti/Miller Transplantation Institute about a month ago. I also have Pulmonary Arterial Hypertension (P. A. H) and am seeing both a Pulmonologist & Cardiologist (had to get a Heart Catheterization to determine the condition of the P. A. H earlier this year) and I saw them for the first time on July 11th. I would like for everyone who are or has gone through transplantation to share their stories here for moral support (which helps both you & me, for there is strength in numbers), informative links, websites, and help in obtaining what we need and what is out there for people like us. This is by far the biggest threat I have yet to deal with, and being a rape 'survivor' from the age of 18, a former drug/substance abuser that led to the loss of so much of myself, my dignity and self-respect (currently celebrating my first year in sobriety, makes things even harder, but it is getting better with time), is saying a lot. Fact being, I'm a mother of a beautiful son, a daughter of a caring mother, an aunt to 5 precious girls, and a sister to three brave women. Granted, I've made some awful mistakes that I may pay the ultimate price for, but no one is perfect and no one deserves to go through all of these awful things in life, but to have to go through them and learn nothing...well, that's just not very smart! Believing in God has helped me A LOT and strengthening my relationship with Him has not been easy, but I would be lost without my faith. Even though I have family support, it's hard for them or anyone to understand what kind of pain I'm going through, except those who are going through it, and even then, everyone has their own unique story in their 'path to recovery'. I'm inviting those who wish to share their story, wisdom, and strength with me, on my blog. Thanks for reading & please feel free to share your story with me!

Monday, September 19, 2011

And the Fundraising Begins...


I've added a new link on the right side of this page, I'm now a patient of National Foundation for Transplants (NFT) and you can make a tax-deductible donation in my honor by clicking here.  When you click to donate, please be sure to put that your donation is in Honor of Victoria Santiago.
If you don't put that, it will go to the general cause of NFT.  I've also been recruiting volunteers.

It's very vital to the fundraiser that I have volunteers to help me, weather it be people who can donate an hour of their time, donate items, or any services that you can offer (i.e. babysitting, haircuts, baked goods, items you wish to get rid of that can be auctioned off, etc.)

Now, in order to be a volunteer, I need to put you down as one.  For this, I need your full name, address (where you get mail), phone number, and email address.

I'm going to give a short description of what volunteering entails (all don't apply, even if you can do one of these, it would be much appreciated!):

  • Contact local (and national) people you may know (friends/family) who might help with donations, volunteering time or sponsoring events
  • Participate in local events that have/are being(been) planned
  • Collect donations at booths at events, put canisters by cash registers at local stores (materials will be provided to you) & collect funds to be handed in at the next Committee Meeting
  • Contact local businesses for donations of products/services to use at an event (auction &/or raffle)
  • Contact local civic organizations and ask for volunteers to help (methods of approaching organizations & businesses will be discussed at Committee meetings, as well as all proper forms)
  • There will be 'brainstorming sessions' at Committee meetings and all ideas are welcomed/needed!
  • Committee meetings will be held 2x per month, for 1 hour, on a weekend in the evening, so more can attend (I will not have Committee meetings interfere w/work schedules & make them at appropriate times when everyone will have an hour to spare
These are just a few things that a Volunteer can do.  I am very considerate to everyones hectic life, and I don't wish to interfere with it.  However, this Fundraiser is a necessity for my survival.  Life after transplantation is not easy.  There's lots of medications that I will need to take for the rest of my life, and I'm not certain that my insurance will cover all of this.
Also, all funds that are donated go to NFT, and NFT regulates what can be reimbursed, and what cannot be reimbursed.  For example, I just put in for reimbursement for a blood pressure monitor that my PAH Dr. told me to get.  That will be approved by NFT.  If I wanted to buy new clothing, or pay my phone or cable bill, these will not be reimbursed to me from the funds that NFT has in my honor.  Only medical expenses, and expenses related to my transplant will be reimbursed to me.  So anyone who wishes to make a donation, be assured that this money is going towards medical expenses.

Committee meetings are essential to keep the Fundraising efforts running smoothly, and to ensure that efforts are being made towards the cause.

If there's any students who wish to become a volunteer, since NFT is a 503 (c) charity organization, it can be put towards any school requirements of volunteering.

Also, Volunteering is a great thing to add to your resume.  Companies are impressed to see that you have volunteered your time for a very worthy cause.

I have much more information on volunteering, and, as most of you may already know, I'm planning a Fundraiser in Central Park which will be a 'Movie Night'.  I'm very grateful for those who have agreed to help with this particular event, however, to keep the Fundraising Committee together and aware of what is going on 'as a group', is vital in order to help with any particular event(s).

If you wish for more information on volunteering, please send me a message.  It doesn't matter what state/country you live in, anyone can volunteer by helping with fundraising efforts, and documents can be emailed to those who live outside of NYC.  Anyone who wishes to help me in my fundraising efforts are welcome!

Thank you very very much for all of your help and time.  I look forward to having you as a part of the fundraising committee!  Have a blessed day!
Posted by natwillsbrg at 6:23 AM
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