Skeletons in the Closet...

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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...

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...

But what do we say to the kids?...

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I'm having a little bit of a conundrum, or something of some such. For those out there who have undergone transplant, and had small children (when I say small, I mean under the age of 12 yrs old), what did you say to them? I've been using the 'don't ask, don't tell' method and it is proving to be a MASSIVE FAILURE! I think when my 'big day' comes, and I'm going to have to go under the knife, I do want to see him when I wake up, I do want to see his little smiling face, just in case, you know?
However, my child is a worrier. Just like his mommy! I was hospitalized in February, and I don't exactly remember how he found out that I was in the hospital, but he did. And I got a phone call, from my cellular phone, in my hospital bed, from my child's Guidance Counselor telling me that my son was vacant in school today. Vacant in the sense that he was clearly there, but not there. He was very empty and sad...and even in the over-crowded NYC Public Schools (where their can be up to 40 children per classroom), his teacher noticed this and pulled his aside to ask him what was wrong. He told her "I'm sad because my mommy is in the hospital because her heart hurts". Of course, as any parent would, hearing this tore me to shreds. I was actually being hospitalized for Ascites & chest pains, this is what gave him the idea that my 'heart hurts', since he clearly already sees my big belly, and to him, for now, that's almost normal to him. It's become normal to me, it's a part of my life I cannot change. I've learned to simply live around it, stretch my back when it hurts like hell, wear clothing that's not tight like I used to like to wear. I call them my 'tummy illusion' outfits! And my closet is full of them! Being a 30 year old female isn't easy with Cirrhosis. I'm not, I guess, what you would call the 'typical' Cirrhotic. By 'typical' I mean, statistically, Cirrhotic's are male, over 40. So, this has been a particular blow on my ego! I don't mean to sound shallow, but I've almost grown accustomed to people telling me that I'm pretty--it's also annoying, when egotistical-males whistle at you walking down the street--but, to be honest (like I always do here!), I kind of miss that.  I've always took pride in my looks, grateful in the fact that by just rolling out of bed, I don't need a lot of make-up, just a little lip gloss, sometimes not even, and people would STILL say that I was pretty. I'm not going to be pretty anymore...or at least that's how I feel. I feel like I'm going to be a freak with a freakish scar trailing accross my body, never living the way I was, never being the same, and lately, I have asked myself: What kind of quality of life will I have after Transplant? Do I want that kind of life?'
Well, I know I've now strayed off the beaten path (lol) of the title of this particular page, so I will get back to what I wish from all of you.
I feel like my child is going to see me and completely freak out, get depressed, flunk school, all of the things that I, too, went through as a child seeing one of my parents die. Which, either way you look at it, in a small way, or a big way, a part of me is going to die once I get my Transplant, and I don't want it to, but, hey, that's the price tag for living, isn't it? Maybe I'm expecting the worse out of all of this...maybe my 'pessimistic negitivity' is clouding my better judgment. I don't want to have my son find out about all of this like I did...like BAM ...this is what's happening to you, like it or not! So, I now ask all of you, I rephrase my previous statement, and I am asking EVERY parent out there, Transplant patient or not; How would you 'break this' news to your Child? Thanks for listening, your opinion matters to me! Till Next Time...

My Appt. today...

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Well, my feet (as you can see) are the size of tubs, I noticed yesterday that my ankles were a little swollen and I woke up to this! For those who don't know me, I have (had) nice, slender feet & ankles, but right now I don't. The skin's peeling on them too, cause the skins stretched so much so fast. They are ITCHING LIKE CRAZY! I have this powder stuff that tastes God awful, so I usually don't drink it, but it's for the itching & I've been scratching the hell out of my ankles & feet. Oddly, my chest has been itching, too, so I will take this 'powder junk' for the next few days, see if it helps. Well, basically, the Dr. said that she wants 3 non-invasive tests done (CAT Scan, Breathing Test & Echocardiogram) to make sure that the Viagra that I've been on is helping with my Pulmonary Arterial Hypertension (PAH) since I've had my Heart Catheterization done. My PAH must be under control before I get on the 'active' liver transplant list because if it's not, I will not survive the surgery, the risks would be too high, they wouldn't even try. So, the Dr. also agreed w/me that my MELD should be WAY higher than 12, which is what it's at now, due to my liver enzymes only. When they factor in the PAH, my MELD will be higher. So, I will see her in a month, and during this month, I will get these 3 tests done. When I see her, hopefully everything will look good, my MELD will be raised (I believe it will be raised regardless) so I can be on the active list. I feel exhausted, so I'm going to rest for now...the Dr. also told me to take double the dose of the water pills I'm on now. Hopefully, my feet & ankles will not be swollen anymore, due to the raise in my water pill dosage. For those reading out there, please click on the "Follow" button on the right of this page and it will ask you to sign in, it will say google, but you can sign into any email account you have, it doesn't have to be gmail, just put in your email & password & you will be following me, and I can see you following me. Wish me luck on these tests, I have to call tomorrow and schedule them. Will keep an update on when the tests get done. Thx! Till next time...