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!

Thursday, September 15, 2011

Skeletons in the Closet...


I quit smoking yesterday, it was something that had to be done, and it may have been the reason that I didn't get medical clearance last month.  Any disease/disorder that can result in the need for a lung transplant, smoking definitely isn't helping it get better, regardless of the medication.

Since I'm on this new Letairis to help my PAH, and it's side effects are so awful, it'd be pretty pointless to continue to smoke cigarettes and take this medication, as well.

Well, the Edema (swelling/water in my feet) was actually coming out of the pores of my foot yesterday!  I didn't even know that could happen.  Everyone told me to keep my feet elevated, and I, stubbornly, finally heeded to their advice last night, and to my surprise, woke up today and they're about 75% less swollen than they were!  So I'm definitely going to keep my feet up!  It's not the most comfortable position, but it works.  When I first elevated my feet, I felt a tingling sensation coming up my legs (possibly the fluid moving up my leg?) and I guess, once it got high enough into my abdomen area, it could then be processed by my kidneys (since I'm on large doses of diuretics aka water pills) and I can urinate it out, which, this morning, after sleeping with my feet up all night, I went a lot this morning!  So that's good!

So, I wanted some advice on all who are reading this, you can click the "comments" blue words at the end of this particular blog, and 'Post a Comment'.  I came upon a young woman on Face Book that published her own book.  I've started to read it and it's really an amazing story!  Many people have told me that I should write a book, since I've conquered so many things and have came out alive on the other side.  This isn't solely about my liver disease, it's more of my teen years, and how everything spiraled out of control.  Of course, I do want to mention where I'm at now, and I would almost be tempted to talk about a lot of those things here, but some of it is a little disturbing.  Nevertheless, it's what's happened in my life.  One main thing I would touch upon that I haven't touched upon here, is when I was raped.  I've never really spoken about it, and after it happened (when I was 18), I did the right thing and testified against him in trial, and he was found guilty.  His sentence was up to the judge and based upon his crimes (which can be seen here [last name: Samuels, first name: Craig]) the sentence could have been 7-25 years.  He was sentenced to 20 years.

I see my life in chapters, just like a book, and certain 'chapters', I see it as other life-times that I just don't want to think about.  However, my way of dealing with things for a long time was not to deal with them; it was much easier to stick a needle in my arm and forget.  When you stop using heroin and get this flood of emotions, turmoil, and everything that's been suppressed over the years comes and smacks you in the face, it's too much to handle.  Reality hits like a smack in the face and it becomes overwhelming.  There's only so much that one person can take, and everyone has their 'breaking point' which I define as the point of no return.  Just losing your mind and never coming out of it.  I've heard of things that have happened to women, who are now permanent residents of a psychiatric ward.  Their body functions, but when you look into their eyes, there's a vacant stare and nothing can be seen in them.

When your life is threatened by another person, it's an indescribable feeling.  A lot of women who've been raped block out what's happened to them, but I remember everything.  I don't know if that's due to me testifying at his trial, or having to repeat my story to the police, detectives and the District Attorney, or just because my memory is good.  I even remember when it finished, and I was in his car, I yanked out my hair and tucked it between the seat, left a big hand print on the window, all in the hopes that if I was going to die, right now in this car, the police will find my DNA in this vehicle.  My death will not go unavenged.

I also remember when he told me to get out of the car, that I was going to take down his license plate.  I had no pen, & I frantically went through my purse, got out a lipstick and wrote his plate # down & kept repeating it in my head, like a mantra, AD8-66A, AD8-66A, over and over until I got to the pay phone and called 911.  I also recall breaking down in the back seat of the police car.  I was a complete mess, clothing ripped, hair all over the place.  I heard the cops asking me "What was the model/make of the vehicle?" and I said it was a silver/grey older long car.  I then hear 2 officers conversing and saying "What does the plate come back as?" (other cop) "It's coming up as a silver 1987 Grey Lincoln, registered to a Craig Samuels".

Craig Samuels.  This was the first time I ever heard that name.  The unspeakable evil now had a name.  A name I would never forget, and a name that I wish I'd never heard.

At that moment, I knew that the police had him.  I knew that he was stupid enough (or just assumed that I was stupid and wouldn't call the police on him, I don't know) to use his own vehicle & license plates.  I went to the nearest hospital, was checked and had a 'rape kit' done (they scrape the bottom of your nails, have a piece of paper to collect whatever comes out), and I saw my mother.  She was in tears, just seeing me in the state I was in, and she hugged me and we cried, together, in an over-crowded hospital Emergency Room.

In the following weeks, I was brought to a police station, and there was this female detective who had me view a line-up.  Surprisingly, there was another woman in the car, who was viewing the line-up as well.  We talked a little bit, and I asked her if she knew that this was the person who assaulted her.  She didn't know it for a fact (didn't take down his license plate), but they brought her along to view the line up since the perpetrators MO (Modus Apperendi) was the same.  It was a dark night (like something out of a bad Hollywood movie) and the conversation was minimal, however, she was confident that this would be the same man that assaulted her.  We waited in the police station in a closed room.  An officer opened the door.  She went in first.  When she came out, she was in tears, shaking her head and said he wasn't there.  I really felt for her, however, at the same time, I was pretty confident that wasn't going to be my case, since I had more concrete evidence of this mans identity.  I barely had to look for a second when I said "Number 2".  I asked the officers if I was right, and they said I was.  Then the detective spoke to me and told me "This man's been violently raping women since 1979, but the women he targets (street-walkers, drug addicts, etc) never show up to testify, or show up to testify while they're high, and he's found not-guilty.    She told me he was laughing in the other room, thinking this is all a game, that I would not show up to testify, or I would change my mind to testify.

That wasn't the case.

If anything, that gave me even more fuel to nail this SOB to the wall to be certain that his 'reign of terror' ends here and now!

By the time the trial came around, they had found four other victims, and he was being charged for 3 different rape cases, and, after that, he was to be tried for 2 other rape cases.  By this time, (almost a year after the crime occurred) I was pregnant with my son, had a job and I dressed accordingly for court and told my story when the time came for me to testify.

I must have made an impressive witness, because my story never changed from when I called 911, till then.  However, his story changed several times.  First, he had no idea who I was.  His DNA was extracted from me, and when faced with this, he said "She was a prostitute that I saw and paid her", then his story finally stood at "She was a prostitute and I didn't pay her"(like he thought that would matter, it only damaged his credibility, not mine).

Surprisingly, he was found guilty on my case only, and not guilty on the other two cases (which is strange, and I think the only logical explanation for that is (a) the two girls did not show up to testify,  (b) were very high while testifying, or (c) lied about what they were doing on the streets in the first place, and changed their story, which doesn't help their credibility.  I was honest from the start.  Even though I was up to no good when this happened, that doesn't give anyone the right to do what he did.

I even showed up at sentencing, where I learned even more horrible things about this man, Craig Samuels.  Things that, by law, couldn't be used to try him on the case (prior bad acts), but can be used as an aggravating factor for sentencing purposes.  The DA said "This is a predator, a menace to society and his own family.  He was charged with Attempted Murder when he beat his wife with a 2 by 4 piece of plywood with nails protruding from it, puncturing her lung, among other things, and sending her to the hospital for 3 months."

The Judge said that he cannot sentence him based on prior bad acts, and can only sentence him based on what he did to me.  He said "Sentence for these crimes is 7 to 25 years.  I hereby sentence you to 20 years", smacked his gavel and the prisoner (monster) was taken away.

He was supposed to have yet another trial, after being found guilty on my case, so he took a plea bargain with the district attorney and plead guilty to all 3 counts (well, 2 actually, not including mine) and was sentenced to 20 years, all to run concurrently (at the same time) and chose not to have another trial.  Had he rolled the dice at another trial, he would still have to do the 20 years for my case, and any other charges found guilty on, the time would be done consecutively (one after the other), not concurrent.
Strangely, I've been keeping tabs on him, and his prison record.  I don't know why, I should just leave it alone, but curiosity, I guess, gets the better of me.  I've seen that he's been transferred to many different facilities, and I recall calling one of these facilities asking about him.  When the Correction Officer asked "Are you a family member?", I told him the truth, that I was the victim (I hate that word), and his lips sealed, but, he did tell me he was transferred because of all the 'write-ups' (bad things) that he had, and that he's had 2 1/2 years of good time taken away from him.  So, even though I plan to record a video for his parole hearing, I'm pretty sure that he will be denied parole when it comes up in 5/08/17.  It's a private hearing (unlike TV shows us, you cannot be physically at the parole hearing, however, the DA can either read a letter, or show a video tape of your feelings about him being paroled), so I will write the DA a letter to be read at his hearing, but it's just scary to know that this man will be free one day, and as much as I'd like to put it behind me, I can't.

I'm afraid that he will want to retaliate against me.  Technology is a great thing, but in the wrong hands, it's something that can track me down, as if I have a GPS inside of me!  I can't worry about that now, I have much more pressing issues right now with my health.

Alright, so I'm asking everyone or anyone who has published a book before, if it would be a good idea to write a book, or if you think it would be therapeutic, or if it will just remind me of things that I'm trying to forget.

Life is always a battlefield.  Everyone has his/her own definition of what a 'crisis' or 'problem' is, and, I'm going to say it...but since I've been diagnosed with a life-threatening disease, I think that, as a whole, I've been though so much more, and it makes me completely insensitive to other's petty problems.

I guess I just always assume that my 'friends/family' would automatically be there for me, and be willing to help in any way, shape or form, but a family member of mine is really giving me a hard time.  Claiming they're been 'reluctant to help me' cause of......  Reluctant to help me??  Is that serious??  Your my family, I shouldn't have to even be asking them for help, in times of crisis, all the BS gets set aside, and we stick together, like a family should!!  I mean, what part of "I'M DYING" do they not understand?  So yes, I may get a little bitter or angry when I have to ask my own flesh & blood to help me, their dying sister/cousin/aunt/niece, whatever!  I feel that I have a right to be a little pissed off that I have to ask my family for help when they know darn well that I need the help!

I've met some awesome and amazing people from all over the world through this site and Face Book, as well, and they're total strangers to me, and they're helping me more than my own family is!  I'm very grateful for that, but I'm also a little depressed and disappointed that total strangers (who have now become good friends) are more willing to donate their time/effort for me, than my own family is!  I shouldn't even have to ask!  I should be asked if their is anything they can do to help me through this awful time.

Some people are so self-centered & self-absorbed with themselves, that they don't care about anyone else but themselves!  I just can't see how people can stroll through life thinking that the world revolves around themselves, and have no heart towards anybody else's problems, including their own family & children.

Well, that's enough of that, and like the saying goes "When s**t hits the fan, you find out who you can really trust & rely on", or something like that!  So, please leave comments, click on "Comments" right below these words, and another window will open and it will have space for you to "Post a Comment".  Thanks for listening...Till next time...

Sunday, September 11, 2011

The Return of the Ascites...


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...

Tuesday, September 6, 2011

The Next Painful Months Ahead...


So, I'd be lying if I said I wasn't scared out of my mind right now.  This new medication that I'm on, Letairis (click here for more info), has a lot of very bad side effects, especially towards the liver (click here to see side effects of Letairis).

This medication was more of a 'last resort' for me, which is why I was put on the Revatio in late March 2011, which is after I got the results from my Heart Catheterization.  At the time, the Cardiology Dept. at Belleview Hospital thought it would be the best medication for me to take that does the least damage to the liver to treat my PAH. 

Even though Letairis is damaging to the liver, it's the only medicaiton that is the 'least damaging' to the liver, however, it still puts a very bad strain on the liver, even for someone who doesn't have liver disease.  There are different types of PAH.  Their's Primary Pulmonary Arterial Hypertension (PPAH) and Secondary(aka Associated) Pulmonary Arterial Hypertention (SPAH/APAH), obviously, I have SPAH/APAH, and in each of these two types, their's what's called the WHO scale, which determines how severe the PAH is.  It ranges from Class 1, being the least damaging, and Class 4, being the most damaged which includes; unable to perform any physical activity, feeling tired even while at rest/sleeping, shortness of breath even while sleeping and symptoms increase with almost any physical activity. (Click here to read more about the WHO Class Scale)

I have tried to educate myself as much as possible about PAH.  However, it's just more bad news that I really don't need to hear, but in a way, it's best to know what's wrong with our bodies.  In severe cased of PAH, a lung transplant may be necessary.  However, and thankfully, I am not in a Class 4, I'm somewhere between Class 2&3.  This is where Letairis comes in.  It will help relax my Pulmonary Arteries so that the blood may flow  more freely.

I try to push all of this stuff into the back of my mind, or not so close to the forefront because if I thought about it 24/7, I'd destroy myself!  I'm just thinking of today, and the now, cause the now is all I have.  Nobody's guaranteed tomorrow, and when faced with all of these super-critical health issues, it makes that even more real

I enjoyed two birthday parties this weekend, and it was nice, but it's also a reminder on how many more birthdays, family events, and holidays I may have left to spend with my friends & family. 

These next three months are going to be very hard because I will start to get all of the side effects that I was hoping to be spared of.  The constant pain, which I'm in pain every now and then and it completely dibilitates me when it comes.  The stomach cramps are unbeareable, and all I can do when they come is lay in fetal position until it passes.  I try to not make a huge show on when these occur, and to be honest, I don't really want to talk about it here, because I don't want to sound like I'm complaining, or expecting sympathy or pity from anyone.

What really bothers me also is that people assume things that they have no idea about.  I'm disabled, and just because I wear nice clothing, makeup and don't complain about all of my 'private horrors' doesn't mean that they're not real.  I wish they weren't real, and I wish I could say that I was feeling fine, but I'm not.

This medication 'Letairis' will destroy any strength/energy I have.  In fact, I'm struggling to keep my eyes open right now to finish writing this blog!  Most of the side effects of all of the medications that I'm taking is dizziness and feeling sleepy all the time!

So, I'm going to wrap it up here and get some rest.  I'm just concerned about these next three months, and I'm really scared on how these effects will change me.  The jaundice which is what I've really not been looking forward to, because my family & friends will see me in a very bad way and I don't want anyone to worry about me more than they already are.

Ok, I will keep in touch...till next time! ;-)