What a bummer...

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The MRCP was done, and I do not have PSC, and in a way, I'm really pissed about that, but another part of me is relieved.  It's hard to explain.  I'd have to say that I'm more pissed than relieved, though.  I'm tired of not knowing what I have, and how my liver became so messed up.

My Dr. said "20% of their patients have unknown cirrhosis, and it's as frustrating to them as it is to me".  YEAH RIGHT!  I highly doubt that.  I've subjected myself to countless MRI's, CAT Scans, an Endoscopy, a liver biopsy, blood work monthly, and we still don't know!?  I'm willing to continue with the 'process of elimination'.  I've already been through all of these test, what's a few more?  We know what it's not, it's not Alcoholic, Hepatic, Billirubin, Auto-Immune, and now PSC, so let's keep going.  If we keep excluding the types of cirrhosis, whatever is left must be the cause.  Let's start thinking outside the box.  Let's not exclude things just because it happens mostly to males, or those over 40, cause chances are, it's probably something so rare, that my Dr. isn't even considering it as the cause for my cirrhosis.

On another subject, my fundraising is going very well, and for all those who don't know, I'm fundraising with NFT (National Foundation for Transplants) and the link can be seen here.  I've already raised a nice amount, but nowhere near what needs to be raised, if I'm to have a successful liver transplant.

I'm selling feather extensions (as seen on the left) for $5.  I have two different kinds, as you can see.  One set is 16 inches long, the other's are 5-8 inches long, and if you live in Brooklyn, NY, I can put it on you very easily, if you don't live nearby, I can ship them to you anywhere you are (please let me know location, and I will tell you how much the S&H will be).  I should have them in my possession in 2 weeks.  You can send me an email on which one you would like, which color you would like from the selection in the pictures, donate $5 per extension (if being shipped, contact me first, so I can determine the total of your order, go to the NFT donation website here and put in the comment 'Feather Extensions', make sure that the donation is "In Honor of Victoira Santiago", I will be notified that the donation has been made and will ship them out.  I will start taking orders once they arrive, which should be soon, which I will put on my Fundraising site, which is here.

So, that wraps it up for now, for all those out there, if you haven't sent any appeal letters, or shown the fundraising site to others, please do as soon as possible.  The web address is: www.transplants.org/donate/victoriasantiago
Ok, till next time....

And the Fundraising Begins...

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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!

The Return of the Ascites...

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Well, this was to be expected, I guess.  This medication, Letairis, is showing it's awful side effects and pretty quickly, too.  My feet, ankles, toes, legs and belly are balloons, once more, except my diuretics have already been raised, so taking more of those won't help.  Also, my tummy is exceptionally large, once again, so the water pills alone are not enough.  This is also a side effect of the Letairis, which I can't just stop taking, since it's crutial for my medical clearance and helping my PAH. 

So, I'm pretty much at a loss of what to do, but I'm also pretty sure what needs to happen.  A paracentisis, which is also knows as a 'tap' where a needle is inserted into the abdomen and the fluid is drained out.  I probably also need IV Lasix (one of the diuretics I take in pill form) to drain the fluid from my legs & feet areas. 

Unfortunately, this is all inpatient stuff, so I'm going to pack a little bag with clothes/necessities and go to Mount Sinai's ER.  I'd rather be admitted there, since they have all of my medical history there already, and it's a much better hospital than Woodhull, which is my local hospital.  So, it looks like I'll be 'out of commission' for about 2-3 days, hopefully no more than that.  Also, my Dr. will be able to visit me while I'm there, just to check in and see how I'm doing.

Well, that's about all for now.  The weird thing is: I'm not afraid.  My friends/family are freaking out WAY more than I am.  I've spoken to a lot of post-liver transplant patients through TransplantBuddies and they've been hospitalized more times than they can remember!  Having the taps done (one person had 7 liters of fluid drained from them, and another had 120LBS of fluid drained, isn't that insane?!) are part of the territory when it comes to liver disease, everyone who's a pre/post-liver transplant patient knows that!  It's just something that happens, and it gets dealt with like anything else.  So, I feel like to be nervous & complain about going to Mount Sinai is acting like a baby compared to others who've went through this before me!

You know, it's amazing to hear other's tragic stories on what they've went through, and came out alive and living their lives, and loving it!  That's really been my inspiration lately, especially when I was feeling so tired of everything and all of this horrible (which is an understatement) news that I've had to deal with this last month, but hearing others who have already went through all of this, and are living life now, has really given me the strength and courage to push through!  I'm even considering writing a book.  Not just on all of my health problems, but of my entire life, things that I don't really talk about here, but have only touched on (such as being raped, living on the streets, selling myself to support an addiction, having overcome all of that and now, facing the ultimate test of faith, by having all of these health issues).

I've already got a very full plate, since I'm spearheading my Campaign for Fundraising (for more info, click here), and getting together as many volunteers as possible.  It is recommended by NFT that I should designate a 'Chair Person' other than myself who can do all of this for me, but I really don't have anyone who will fight for this cause as much as I will.  Everyone I know has jobs, so they're time's already limited, but, to my surprise, I'm actually really good at fundraising, and have came up with some great ideas and events.  However, I will designate someone to be my Co-Chair person, so that when times like this, that I'm 'out of commission', my Co-Chair person can take over and make sure things in the Campaign are running smoothly.

Also, for those who wish to Volunteer, or would like more information on Volunteering for my NFT Campaign, please send me an email and I will send you all of the information you need.  It's crutial that I get more Volunteers, regardless of what state/country you live in, you can Volunteer towards the Campaign, and, sadly, as of right now, including myself, I only have a lousy 9 Volunteers!  So please send me an email on how you can help! 

Thanks for listening, and wish me luck at Mount Sinai! Till next time...

The Route I choose to take...

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Well...this is a VERY slow process, however, I do believe that I have found my living liver donor. She is aware of the risks, not to say that she's bound and has to do this, but she has agreed after all that I could explain about the risks to her. So, I'm writing this page because I think now is the time to start my fundraising. I've had a few offers from organization's who are willing to help me, I think $10,000 is my goal to raise. I've done the math, and her rent & bills for 3 months, not to mention the fact that she has 3 children and would need Child Care costs, Transportation, & whatever else is deemed necessary for her to live for 3 months after her donation. My insurance (it's NY Law) covers her procedure of getting the Hepatectomy, however, I do not wish for her to lose her job and have to pay money out of pocket for me, I think, as I think all of you will agree, that she's 'paying' enough! Her gift to me is priceless, it's the gift of life. So, I'm writing to all out there who wish to donate, they can contact me via email on the email contact form to the right of this message, any amount donated is sincerely appreciated, it is also tax-deductible. I will add another blog sometime soon when I get in touch with some organizations who the money can be sent to, and I am writing this blog for those organizations who wish to help me with getting this fundraising started. Out of respect for the donor, as of now, I am leaving her anonymous, she knows who she is, we have spoke all about this. Thanks for reading! Hope everyone else is doing better than I am! I've been feeling very nausea's lately and my feet are aching day & night. God Bless.