A bittersweet victory...

Well,I got my heart catheterization on Wednesday, and after 9 months of waiting...I finally got the medical clearance that I've been waiting so long for & thought I would never get. I'm now on the active list, and can proceed with getting the necessary steps taken to get my life-saving Liver transplant.
This may be a bittersweet victory for me. I'm uncertain if I now have any living donors to be screened & I hope I do. If I don't, then I will be waiting for another 9-12 months for a cadaver donor, which feels like a lifetime away. It may also be a death sentence. I don't know if my body can continue functioning for that long...and with all of the pain I'm already in...9-12 months more will be a God-awful nightmare. This means a year of going to the emergency room...getting more taps (paracentesis) done, possibly falling into comas, just to be brought out of them and sent home...I just don't think that I can take that.

I really do understand that it's a HUGE order to ask of anyone, especially since everyone is out for themselves...and if the shoe was on the other foot,I don't think I'd be volunteering to undergo an extremely invasive surgery for my family, but I can't help but be a little angry, well...not angry, but disappointed & depressed. It makes me feel like no one values my life. I was expecting this to happen & I tried to prepare for the worse, but now that I've FINALLY crossed this barrier that has been keeping progress from moving forward, I thought it would all be easy from now on.

I just feel like I have such a large family & assumed that someone would step up & wish to do this for me. I feel foolish in making that assumption.

Since I've started this blog, I've meet so many people that have had transplants, and have had successful living donor liver transplants, from family members that took that courageous, selfless, act to help their loved one, and I was pretty confident that someone would step up for me.

Perhaps I'm making unsubstantiated assumptions, I don't know, but it feels like a very hallow victory. Call me a pessimist, but I just don't think that anyone will wish to be screened for my living donor, or may get screened and then decide that the risks are way to high for them to consider. And the risks are high. I'm not minimizing it in any way, I know this is asking for something that most people would not want to give, even if it meant the suffering and death of a family member. The screening process is a vigorous one. The living donor will be assigned a 'counselor/advocate' who's job is to make sure that this person is not being coerced in any way, shape or form. In fact, I'd even go as far to say that this 'advocates' job is to discourage the person from donating, in a way. If the slightest hesitance is shown, then the plug would immediately be pulled, and this 'advocate' would not let the screening go any further.

This isn't something that I can ask someone to do. This is something that someone WANTS to do, is volunteering to do. Even though I feel like someone should be volunteering to do this, I cannot expect anything from anyone. Not unless they're whole-heartily volunteering to do this, because it's, what they feel, the 'right' thing to do.

I guess only time will tell at this point.  They're other factors to be weighed in, as well.  Does the living donor have the 6 weeks to take off of work without getting fired?  Do they have children that will worry about them, and who need them?  Are they healthy enough to undergo a surgery of this magnitude? Are they what's considered a 'high-risk' donor, due to medical conditions, and if so, is it in my best interest to live with whatever health issues that they will pass on to me?

So many questions...so much 'red-tape', yet so little time.  It's extremely discouraging, and it's also very depressing.  It really makes me realize how alone I am in this world.  I'm not saying that I don't have anyone who cares for me, or that people don't care for me because they're not willing to do this...but, nonetheless, it's depressing.

So, I will see my Pulmonologist/Cardiologist on Monday, and all paperwork will go to my Liver Dr, and I will have to see him to plan the next stages of this journey...perhaps the final stages of this journey, perhaps the beginning, I don't know yet.  Time will tell.  Till next time...

Taking a Second Shot...

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I'm having my right side heart catheterization, again, at the middle of this month (the Dr has yet to given me a date, although she said it would be the middle of December, probably near Christmas) to determine if I am medically cleared for surgery...or not.

I've been in this position once before, 3 months ago, and was sorely disappointed when I did not get the medical clearance, however, I feel this time may be different.  My Dr. has not discussed putting me on more medication, and has not even discussed what would happen if I don't get medical clearance.  I sure hope I do.  I've been experiencing horrific pains, and they're more constant than ever.  I sometimes feel like they're just letting me die...and if they are, why prolong the process and make me suffer unnecessarily?  These pains are so bad, even with the Percocet that the Dr prescribed for me, it does nothing.  I feel completely and utterly useless.  Like I serve no purpose other than to take up space and breathe air.  These pains come so frequent and hard, that I can't even leave my house without the fear that I'll be forced to stop in the middle of what I'm doing to take a car service home.

Perhaps I should try to get out more often.  I find when I'm outside and walking around, the pains usually don't come.  It's when I'm immobile that the pain comes, and although when it comes it's completely debilitating, and my instincts are to just lie on the bed, in fetal position, until it subsides (which it takes sometimes hours for it to subside, and when you're pain level is past the point of tolerable, hours seem like lifetimes), but I discovered that by going against my instinct, and mustering all the energy that I have, standing up and walking around sometimes alleviates it.  It's very weird, and I don't know if I'm explaining it all that clearly.  But, that's about how it feels.

I went to the Emergency Room at Mount Sinai a few weeks ago.  The stitches on my leg needed to be removed and the abscess needed to be cut open and drained, which, by the way, the Dr. did with no anesthesia whatsoever.  It wasn't as painful as it sounds though.  Once he removed the stitches, I could see that it wasn't fully healed, and my Dermatologist told me that it wouldn't  heal, since it was still leaking with nasty fluid (mostly very light colored blood).  But I was kind of surprised when the Dr at the ER pulled out a scalpel and did a little cutting, to get it more open.  He was pushing it so hard, and it was just oozing out, I knew what was going to happen, as I'm sure he did, as well.  I could still feel a very hard ball underneath, which was what needed to be drained, and sure enough, he kept pressing and it just squirted out like a fountain.

They did a culture on what it was, and it was determined to be infected, so about 1-2 days after I went to the ER, I was given an antibiotic called Bactrim, and I've never had any allergic reactions to any medications before, but this appeared on my arm (the red bumps in the picture) and my skin was very itchy and felt prickly.  The Dermatologist was convinced that this was an allergic reaction and suggested that I stop taking the antibiotic, Bactrim, immediately.  So I did, but I wasn't put on another antibiotic, and my body's White Blood Cells are too low to fight off this infection on it's own, and it's not healing properly, it's still oozing.

So, I've yet to have the date for the  right sided catheterization, but, I do have faith that I will get the medical clearance that I need for surgery, and once I get the medical clearance, then living donors can get screened, and if found to be a match, a surgery date can be set.  I'm still a long ways from that happening, but once it starts to happen, at least I know that the 'gears are grinding', so to speak, because I feel like my treatment has come to a complete stand-still and while the Pulmonary Hypertension Unit is trying to 'stabilize' my PAH, my liver and spleen are deteriorating at a rapid rate.  Soon, I hope, I can finally start my life-long journey to recovery.  I will post once I get my heart catheterization...wish me luck!  Till next time...

Holding my breath...

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I haven't written in awhile and that's because there's really not much to tell.  However, there are a few things that I would like to say first off.
I would like to personally thank everyone who has donated their time, money and prayers with me this last few months, I really appreciate it.
I've had a bit of a shock this last week.  I had a 'tumor' on my leg, 3 doctor's told me that it was benign, and I was referred to see a dermatologist, which I saw this past Friday.  Even the dermatologist, at a glance, said that it was a tumor.  It was a marble sized ball in my thigh, on the top part of my leg.  It felt like one of those little rubber balls that come out of the quarter machines, with toys/candy for kids.  So, he said it needed to be biopsied.  I thought he was going to schedule a biopsy, but to my surprise, he did it right then and there.  So I was prepped up, and he stuck this large round lancet-like device into the tumor and said "wait a minute...".  I was sitting back, so I propped up to see what was going on and to my surprise, it was oozing with this white mucus!  The Dr squeezed it out, swabbed it to get a sample, looked up at me in astonishment and said "It's gone!".  I now have two stitches in my leg, and have yet to find out what it was.  It didn't hurt, or anything like that, it was just there.  It started growing like 9 months ago, and it stopped growing when it got marble sized, perhaps a bit bigger and then started to harden.  Never did the spot feel infected or irritated in any way.  That's pretty odd.

As far as my liver Dr. goes, there's no news to tell there, and it's pretty damned frustrating!  I'm still waiting for medical clearance, and my Pulmonologist/Cardiologist had told me that I was to get another Right Heart Catheterization in December, yet no one has called me to make an appointment for the procedure.  This is so stupid and such a waste of time, because they're so focused on treating something that I don't even feel.  I must admit, my ability to climb stairs and walk has gotten better, as far as my breathing goes, but my spleen/liver has gotten much worse.

I'm pretty much living off Aleve, because I've been getting these pains delivered from the devil himself in my left side, and it makes me nauseas.  If I take Aleve, it pretty much subsides and I have to take 2-3 a day.  I can't live like this!  What if I don't get medical clearance next month?  I don't have time for the PAH Dr. to tinker with my medication and sit back and wait to see if it 'gets better'.  I know it's gotten better because I can feel a great difference, so I will be rather shocked to find out that I still am not medically cleared for surgery.

I feel like everything has come to a grinding halt.  My liver Dr. was told, by me, of the pains that I've been getting and he said "The PAH medication can enlarge the spleen".  I'm like "My spleen was already huge by the time I came to him, and what's going to happen is my spleen will rupture, and then what?  They'd have to put me to sleep to remove my spleen, and if that's the case, then why am I not (by what the PAH Dr. says, who I haven't seen in months) medically cleared for my liver transplant?  Shall we sit back and wait for the PAH Dr. to tinker with my medication at my expense?  What if my liver/spleen get so bad that I have to be hospitalized?  Or fall into a coma?  Will I just die if I don't get this 'medical clearance'?"  Shouldn't it be my decision to go under surgery, regardless of the risks?  The way I feel, is that the risks of things going bad are already there.  If the risk is 5% greater of me not making it, then that should be a risk that I should be willing to take.  It should be my decision to go through the surgery, not my Dr.'s.

It's just so frustrating because these Dr's don't care about my 'well-being'.  They don't care if I suffer, and go through hell and back.  Heck, they don't even care if I get a liver transplant or not!  It's all about milking my insurance for as much money as they can get, and having someone die during surgery is something that a surgeon doesn't want to have on his record.  The better success rate a surgeon has, the more highly recommended he becomes, the more he's recommended, the more money he makes.  It all boils down to the same thing: money.

Well, I don't care about money, or the integrity of any Dr's.  I care about getting my liver transplant and I'm going to start to put everyone on the hot-seat with me!  It's so crazy that I have to corner my Dr's to do the right thing!

I'm just not seeing the light at the end of this tunnel, it's like "Yeah, my imaginary liver transplant".  I can't even get on the damned list until I get medical clearance, and then what?  I wait on the list for 2 years?  Or possibly have friends/family members screened as potential donors?  That's all I really want, because I pretty much already know that the liver I get will not come from a cadaver, but from a living donor.  I'm not going to wait and possibly die on a 'waiting list' for a liver when I have so much family and people who are willing to be tested as a donor.

Wish everyone a Happy Thanksgiving, I'm going to my sisters house, unfortunately, my son will not be there with me, he's going with daddy to Maryland for the holiday.  Till next time...

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....

My Cirrhosis may have a name...

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I've sent an email to my Dr. and asked him if he's had a chance to look at the liver biopsy samples that were sent over from Beth Israel about a month ago.  He said he's looked at them and I may have PSC.  I immediately Googled PSC, which stands for Primary Sclerosing Cholangitis.

It's a very rare disorder that damages and blocks the bile ducts inside, as well as outside the liver.  The symptoms vary, and it can progress slowly, or quickly.  To read more about PSC, click here.  Only 7 in 100,000 American's get this disorder, and 70% of the 'lucky' 7 are male and over 40 years old.  Just my luck!  The odds of me, a 30 year old female, to have this, are about 0.6 in 100,000 people in the US.

Somehow, I knew when my Cirrhosis would be diagnosed, is would be some rare type, but then again, my Dr. said 'I might' have this.  I asked him, "What do you mean I might?  Either I have it or not.  And I, for one, would like to finally know what's wrong with me and what caused my Cirrhosis."  He replied "It's more important to focus on your PAH right now".  I disagree.  Well, I don't disagree, but the fact it, I'm already doing all I can do to help lower the PAH levels right now.  I'm taking my medication, and in December, I'm going to have the 3 tests that I've had done last month done again, possibly a heart catheterization, which I'm not happy about at all, and find out if the pressure is finally within tolerable levels so I can get the medical clearance I so desperately need to get my liver transplant.

But in the meantime, there are ways to properly diagnose what I have wrong with me, such as an ERCP, or MRCP, which will let the Dr know if this is what I have, or if I don't have this PSC.  The MRCP is a less invasive test, and I think in the meantime, from now until December, I can get this MRCP test done to confirm this PSC diagnosis.  If need be, I've had an Endoscopy before, but an ERCP is not a 'regular' endoscopy, it's where a special dye is inserted into the duodenum, which is past the stomach, so the bile ducts can be viewed easily.  An MRCP is basically a special kind of MRI where it can obtain pictures of the bile ducts, and it's non-invasive, and accurate, so more Dr.'s are using this method to diagnose PSC.


I'm going for an MRI on October 13th, since I need to get an MRI every 6 months (or 3 months?  I'm not entirely sure) to check the status of my liver.  I would like it if my Dr also orders an MRCP, as well as the standard MRI, which I have to take anyway.  I just want to know what is causing my Cirrhosis.  The last thing I need is to wake up from surgery, when I get my liver transplant, and being told 'Oh, you had such & such disorder, as it turns out'.  Point being, is I don't need any 'surprises' when I awake from surgery.  I'd like to know what's ailing me now!  The liver biopsy should have been able to tell the Dr's that, which, it apparently didn't.  So the question still remains, what kind of Cirrhosis do I have?  Did my Dr just take a 'quick peek' in the microscope at my 2009 liver biopsy results and say "Oh, I think it's this".  If that was the extent of tests he was going to run on my biopsy samples, then why did he hassle me to get the slides from Beth Israel over to him?  And he's not even going to check to see what I have?  Or if he has an idea on what I may have, he's not going to confirm it?  That makes absolutely no sense!

On another topic, my family and friends have really come together and are helping me with my fundraising, which I thank you all very much!  For those who don't know about my fundraising, please click here

So, that's all for now.  Just to mention quickly, I had to go to the Emergency Room twice, first time for my feet & ankles that were very swollen, as was my belly, when the Dr's saw me, they said that I would definitely need a paracentesis, which is a draining of the fluid trapped in pockets in my abdomen.  Turns out, there was no fluid in my abdomen!  The head Dr. of the ER had another Dr. come to verify in the ultrasound that there were no pockets of fluid, meaning, basically, all of my huge abdomen was all Spleen and Liver!!  It was unbelievable to see how large my spleen was, it started right underneath my breast, and shot straight out into a rock-hard bulbous balloon that ended at the beginning of my groin.  That's insane!  Your spleen shouldn't even be outside of your ribs, and not only is my spleen outside of my ribs, it's taking up pretty much all of my abdomen.  This is, yet another problem, that the Dr's aren't doing anything to fix.  The Dr. actually described my spleen as 'popable'!  Is that a 'medical term'?  Jeez...popable, meaning that if I get one whack to my tummy, it's all over, my spleen will rupture & I may die if I don't get immediate surgery to either stitch it back up, or remove it completely.

The only reason they are not removing it now, is because after the liver transplant, in time, it will go down and back to it's normal state.   Your spleen isn't like your appendix, a non-vital organ, your spleen is what makes white blood cells (which is why my WBC's are so low, since they're all trapped in my huge spleen, which can't be drained of all the accumulated blood in it, since it's not in 'pockets' of blood, it's tissue), and if you don't have your spleen, your body isn't making WBC's, which is what fights off infection, and even me, with my WBC's so low, something as simple as the common cold can, in time, kill me.  Any virus can run rampant and infect me to the point of death since my body has insufficient WBC's to fight infection.

The other time I went to the ER, was because of my teeth.  I woke up, and my pajama was soaked in blood, and it was coming from my gums, when I looked in the mirror, I saw it was coming from a particular area, and that area was a deep red color, I thought it was infected.  Turns out, it wasn't, and they were going to do a platelet transfusion if my platelets were low and getting lower, but, as luck would finally have it, they raised from 40 to 67.  I was trying to think what made my platelets go up so much higher (which is great) than before.  The only thing I can think of, is now that I'm wearing the Nicotine Patch & haven't been smoking for 3 1/2 weeks now, I've been eating green, seedless grapes like they're going out of style!  I mean, like a crateful a day!  I guess it's my substitute for smoking, but I just love them.  Perhaps their giving me the platelets that my body needs.  Who knows?  It can't hurt to eat a lot of grapes, though.

Ok, I will keep in touch, as usual.  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!

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...

The Next Painful Months Ahead...

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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! ;-)

More bad news...

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Well, I didn't get the medical clearance that I need for my transplant.  The right side of my heart still has a significant amount of hypertension, so I am being put on a medication called 'Letairis', and this Letairis has some serious effects on the liver. 

More itching, which I'm itching like crazy already, and when I do itch, a tiny scab can cause alot of bleeding, so, this is a side effect of Letairis, as well as Jaundice, which is a symptom I've yet to experience, and stomach pains, which I already have dibilitating stomach pains, and heart palpitations, and to me, it just seems like this new medication is going to put an extreme amount of damage on my liver.  I really am at the point where I don't trust any of these Dr's at Mt. Sinai, who like to play god with my life!  This never ends!!

I'm making a decision, and it's entirely up to me to make this decision.  I've been thinking of the 'quality of life' that will be given to me after my transplant, and I don't think I want that quality of life; constantly going to the Dr's, fighting for a chance at survival when I may die anyway, and my attitude towards this has faded overnight, it seems.  I have no more fight in me.  I can't take any more bad news, it's destroying me.  I can't take the fact that these 'Dr's' are like my baby-sitters, and I have to ask permission for anything I do.  And it will never end!!  Life post-transplant isn't going to be any better than the life I'm living now.  I will never be 'healthy' again, I will always be on hard-core medication, having to see these a-hole Dr's on the regular, I just don't think I can do it.

I know that people care about me, and they want for me to have a long life, but, if this is the kind of life that's going to be in store for me, than...I don't want it.  If this is God's will that I die from this illness, so be it.  I want to enjoy the life I have now and not have to have myself and my entire family constantly worrying about me.

I have some major decisions to make, and I will not make them lightly.  But, I am considering leaving the transplant clinic, eating a healthy diet, and when the time comes that my liver is just too weak to go on, then I want to go on.  I feel like nobody's even bothered to ask me if this 'quality of life' is what I want.  To be forever on SSI, forever disabled, forever seeing these Dr's, and death awaits us all!  Is this really worth it to 'extend my life' for who knows how long, and have my family in constant worry & putting my loved ones in jeopardy for me? I don't want to put others, especially my family, in unneccesary peril and danger to themselves just so I can extend a few yr's on my life!  I would rather enjoy the time I have, now, with my family and son, and when the time comes for me to leave this earth, it comes.  Who am I to interfere with what God has in store for me?

What I guess I'm saying, and I'm sure it's very hard for everyone to understand, but I would like the last yr's of my life to be stress-free, and happy.  I don't want to die on an operating table, or from a massive infection/rejection of a liver.  I want to enjoy what I have now, and cherish these moments.

I don't know, I'm just so sick and tired of these constant, never-ending Dr's appts, tests, being poked and prodded, having to get 'permission' from a Dr in order to do anything! It's not like they seem so adamant on 'saving my life' anyways.  All they're concerned about is, 'Is her insurance going to pay us for this & that?'  It makes me sick to my stomach that these Dr's have the final say on every single thing that I do!  I don't know, I'm just losing all of my bravado and ignorance is definately bliss!

I just feel like this is a never ending cycle that will never stop, and I will be seeing Dr's for the rest of my life, & I'm really not ready for that, I have a deep mistrust of Dr's, and with good reason.  I've been lied to by Dr's before, and I don't see that changing!

Well, I will keep everyone posted, please leave a comment if you have any advice.  Thanks!

Clearing traffic...

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Went to Mount Sinai today, I'm going to keep this blog brief...I'm kind of tired talking about this.  So, I went to Mount Sinai, was up very early this morning, and I had my Echocardiogram & Pulmonary Perfusion Imaging test done.  After that, I went to Brooklyn Hospital's Dental Clinic, and they were extremely nice there. 

I saw the Oral Surgeon and the General Dentist.  They took Xrays, and what the Oral Surgeon said was that he's looking at 'the big picture' here, meaning that he doesn't want for me to undergo a platelet transfusion, just to have one tooth pulled.  So, it was a good thing that Sam was with me.  The cost of dental implants are very inexpensive there, due to the fact that it's done by residents who need the experience, and my insurance pays for the hospitalization (which would be a must, for the platelet transfusion, I would be in the hospital for a minimum of 2 days), and the only thing that needs to be paid for is the materials, not the labor.  This is what makes dental implants so expensive is the dentists charge a fortune for the labor.  So, the general consensus is that the other teeth that I have under the 7 tooth bridge are not in good shape either.  Also, I was told that I can, and have enough bone, for 2 implants, minimum, on the bottom, to support my full bottom denture.  The implants would work as 'anchors', and instead of having teeth placed on the abutment, it would be snaps, so the denture that I already have can be modified to accomodate the two 'snaps' that would be connected to my jaw, and the denture can snap into my jaw, making a secure fit that will be much more comfortable than it's been now.  I wouldn't need to use polygrip/fixodent or any of that glue stuff. 

Now, as for the top, I would need approx. 4 implants, and they charge $300 per implant, and I would need a sinus lift, as well as bone grafting.  This is a serious procedure, made even more so by my medical condition.  To get everything that I would need done, would probably cost about $3,500, which, thankfully, my boyfriend said he can pay for.  What's more concerning, is my health and if I will be able to get general anesthisia, which I probably will not, due to my PAH, however, I took those 3 tests today that will determine my medical clearance for my Liver transplant.  Based on the first test I took, the stress test, it was very good.  Meaning, that my lungs are compensating for the damage my liver is causing the rest of my body, and that can only be coming from one source: the heart.  So, hopefully, I will get some good news Monday that will let me know that I did very good on these two tests that I took today, and that I don't need additional medication to make the hypertension levels go down.  If that's the case, then I should also be able to get medical clearance not just for the liver transplant, but for the dental implants, as well.

Either way, I'm getting these dental implants, and I'm getting them done at Brooklyn Hospital.  Mount Sinai has a dentist that they 'exclusively' use, and he charges a fortune!  I'm not going to that dentist, and that's the dentist that my Liver doctor is telling me to go to.  What can this dentist do that Brooklyn Hospital can't?  Well, I've found out that they've made a 'protocol' for people who have blood work like me, so it's a little scheme they got going on, a monopoly, so that I feel like they're trying to force me to see their dentist!  What a load of crap! 

So, I will find out Monday how these tests went, and how much my PAH has improved, and on Sept 8th, I'm setting up a plan on getting all of this dental work done.  Till next time...

Damned if I do & damned if I don't...

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Holy crap!  This NEVER ends!!  My bridge was rocking back and forth yesterday, these are my front/side 7 teeth (it's all one piece) and it came out, and my worst fear came true.  One of the five shaved down teeth cracked off with it!  I didn't see it as such a big deal at the time, because I'm just thinking, the dentist will pull what little root of tooth is left, and will cut off the last 2 teeth of my 7 tooth bridge and make it into a 5 tooth bridge.  WRONG!!!

Maybe I shouldn't have been honest, but, I feel that with this stuff, honesty is the best policy.  So I went to a local dentist, who was very nice, and I told him that I have such serious health issues (which I was planning on holding back, because I just want the damned tooth out!), and, as expected, he asked for medical clearance to pull the root of the tooth.  I thought I was going to get it, it's just a root of a tooth, no big deal, after all, I've had 19 teeth pulled already, so I know what was coming,  plus, the tooth has(had) a root canal on it, so I don't feel a thing on it, I feel like if I took a pair of plyers, I could pull it out myself!  Well, my Transplant Dr. did sign the paper for clearance, and, sadly, he also faxed over my most recent blood work.  The dentist called once he received the fax, and could have knocked me over with a feather.

He said, with my platelet count being non-existent, along with my White Blood Cells, that there is NO WAY that he would be able to do the extraction.  He explained that I would bleed to death, the bleeding wouldn't stop, since a low platelet count means that I can't coagulate, and a non-existent WBC count means that I can't heal.  So, he gave me the number of the hospital, Brooklyn Hospital, and told me what was going to have to happen.  I would need to see the oral surgeon there, I would need a freakin blood transfusion to pump up the platelet count, then he will extract the lil stub of tooth!  Seems like an awfully lot of crap to go through just to get rid of a tiny root in my mouth!  This disturbs me a great deal.  I've never had a blood transfusion before, and I don't know if I want one.  I know blood gets screened more properly than it did in the past, but I just don't want to have to take those unneccesary risk.  All of that just to pull one lil tooth?!

I'm very depressed from all of this, my bridge is being supported by fixodent as of right now, and I can pull it down at any time.  I can't possibly walk around like this for a month, maybe more!  Who knows how long it will take to pump up my platelet count?!  Then, I'll have to have a damned emergency standby team there?  I feel like I'm losing it!  My dentist, and I can't blame him, cause he seems like a very nice man, and I wouldn't mind seeing him again, especially because he told me a few interesting things today about dental implants, and the bone grafting, and told me that if I get it done at this hospital, where I'm going to tomorrow, all I pay for is the materials for the dental implants, and with the implants, abutment and crown, it will be $900 per tooth.  That's a great price, compared to the $15,000 that other dentists charge, considering if I (and I do) wish to keep what little teeth I have left in my mouth, it would be about $3500, which my boyfriend told me that he can pay for (thank god for that!), and to get the process started, it would be about $1,200 to start the whole process to get the 4 implants that I will need.  However, I will not have any teeth in my head during this time.  My self-esteem has taken enough detramental blows, I just don't thing that I can walk around with no teeth in my head!  Even though I know that I will get a more 'permanent' solution to all these problems, but, even more crutial, is that if I need a damned blood transfusion for a simple extraction, when will I get clearance to do all of this other stuff?!  I don't see it happening anytime soon, so I just need to get this tooth extracted, and the dentist can then shave off the last 2 teeth, make my 7 tooth bridge into a 5 tooth bridge.  My upper partial-denture can be modified to add those 2 teeth, and that my insurance will cover all of it.

This is just another reminder of how damned sick I am, and how badly I want my health to be better again.  Such simple stuff that I take it for granted, that I think a lot of people take for granted, which is their health!  I always had the naive, childish attitude that I was young and nothing bad can happen to me.  I was never more wrong in my entire life. 

So, this root must get extracted, because if it doesn't, then it will get infected, and all hell will then break lose!  Damned if I do, and damned if I don't!  Till next time...

As the world turns...

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Things are unraveling not so fast as I thought, or maybe too fast.  I saw my Pulmonologist yesterday and basically, had a few questions that I wanted to clear up.  I wanted to know the reason for all of these 'appointments', and just to make sure we're on the same page, I wanted to be sure that the reason was to get my medical clearance for surgery. 

As with most Dr's, the right hand didn't know what the left hand was doing...no surprise to me.  She had no idea that my Liver Specialist had sent me to her for medical clearance, what the status was for my transplant, or anything like that.  All she knew, is that I was referred to her, as a pre-liver transplant patient, and needed my PAH (Pulmonary Arterial Hypertension) evaluated.  Now, she had all prior info on the heart catheterization that I had done in March, and based on the levels of pressure in my arteries, I was not clear for surgery.  That's when I was going to Belleview and was put on Viagra (Revatio).  It's been 5 months now that I've been taking the Viagra (time sure does fly...) and, these three tests are needed to determine how the Viagra has changed the PAH.  She (when I refer to 'she', I'm referring to my Pulmonologist, BTW) told me that enough time has elapsed to now show on the Echo cardiogram and Pulmonary Perfusion Imaging tests that they should be able to see the full effects that the Viagra has had on my PAH. 

Now, back in March of this year, when I had the heart catheterization done, I was told before undergoing the procedure that if the pressure was too high, that they would put a stent in my heart, right then and there.  They did not.  I asked her why a stent wasn't put in back in March when I had the Catheterization, if the pressures were so high.  She gave me an important answer that I was not aware of: the heart has 4 chambers, 2 on the left, 2 on the right...the only way that a stent can be placed in the arteries is if theirs hypertension in one of those main chambers.  That's not what PAH is.  It's the arteries that go from my heart to my lungs that have hypertension, thus the name, Pulmonary (lungs) Arterial (in the arteries) Hypertension (high pressure).  Makes sense, right?  So, I asked her why didn't a stent get put into the arteries from my heart to my lungs?  She said that's impossible.  The arteries from the heart to the lungs are on a microscopic level, therefor nothing can be placed in such small arteries to make them expand, this has to be done with medication, to treat the PAH.  Which is what I've been on, the Viagra, since my catheterization results.

Now, there is a bright side, as there usually always is (and me being the eternal pessimist, it's hard for me to say that!), and that is the Pulmonary Function test results that I did on the 8th of this month.  Those test results came back GREAT!  Now, the Pulmonary Function Test is to check the lung capacity, check for blockage in any airways, to see how long I can walk without feeling completely winded, and to see if my lungs are expanding like a normal (more healthy) person.  On the overall, I scored a 76%, and someone without health problems, has a score starting at 70% and up.  So, I'm within normal range.  That means a few things.  It means that my liver/spleen, as big as they are, are still allowing my lungs to expand and are not being hindered (yet) by the hugeness of the liver/spleen.  Also, it means that my lungs are making up for the deficit of my liver, which can only come from one source; the heart.  On the walking test, what they do is get your baseline heart rate, have you walk back and forth for 6 minutes, and each minute, they check this little box that I hold that's attached to my index finger, to check the heart rate.  So, my heart rate was at a 'normal' baseline to start off with, which is good, and it fluctuated during the 6 minute walk (which it should, since as you exert energy, it's only natural for the heart to respond), and they measure what's called the 'come down' meaning after the 6 minute walk, you sit down and they see how long it takes for your heart to reach it's beginning 'baseline'.  This can take up to 6 minutes to happen.  For me, it took 2 minutes, which is awesome! She measured for 3 minutes to be sure that it would stay at that rate and it did. 

These are all good things.  If I do as well on the Echo and the Pulmonary Function tests, then I will get my medical clearance, and things can more forward.  I was also given two puffs of Ventolin throughout this test, since I was prescribed it, once upon a time, and they wanted to see how big a difference it made.  It did make an impressionable difference, so these are all things the Anesthesiologist will need to know before 'putting me under', so I will be given some Ventolin before I go into surgery. 

Unfortunately, my pessemistic attitude can't help but wonder the other possibilities, and it's more than that.  She told me to sign an authorization for my insurance, to approve (I forgot the name, and hopefully, I won't need to know it!) another medication, in the interest of not wasting more precious time, for more medication that I may need.  These last 2 tests are the most crutial ones.  Because PAH shows it's damage in the heart, moreso than in the lungs, and these last 2 tests are testing my heart.  They will be able to get an idea of my heart function through these tests and see the Viagras full effects.  If those effects are not enough to certify me for clearance, than I will be taking this new medication, and in three months time, I will have to get another heart catheterization done.  I really hope that this doesn't happen, and I feel like it's what's going to happen, since they're already having me sign approval's for more medication, I almost feel like I'm being resigned to this fate.  She didn't know that her 'medical approval' for surgery will be the vital kick-off to start the surgery that I need to prolong my life (I hate saying 'save my life', because no life can be saved, death is inevitable, it can only be prolonged, no matter how old you are, and whether it's prolonged for a minute, or fifty years). 

It all boils down to how well I do on these two tests on the 26th and I'm chewing my fingers to stumps till then!  On a different topic, I have my son staying over right now, and he's been bugging me to watch this new xbox game that he borrowed from his friend, so I'm surprised that I've been able to gather my thoughts for this long!

So, I'll check in (maybe) before the 26th, even though, most likely, when I get these tests done, they won't let me know how well I did on them until the 29th, when I get a phone call from Mt. Sinai probably telling me that they're sending the prescription electronically to my pharmacy!  I hate to sound so pessimistic, but I feel like that's what is going to happen.  Anyways, she's not going to be in on the 29th, which is when I was originally supposed to see her, not yesterday, and she's just left instructions to her PA (Physicians Assistant) on how to handle this when the results come in.  I'm keeping my fingers & toes crossed!  Till next time...

And the Chaos begins...

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Well, yesterday I went to Mount Sinai for a Pulmonary Function test and it went very good.  I have three tests to take, all to see the status of my Pulmonary Arterial Hypertension.  So, the deal is, once I have 'medical clearance' to undergo surgery, then I can get on the 'active' list, my living-donor-to-be (hopefully!) can get screened, which only takes 2 weeks to do, and the gears can be set in motion as to a date of when my transplant will be.

Now, most people don't have a scheduled 'date' as of when they're going to get their transplant, if they're getting on the 'active' list and have to wait for a cadaver organ. Fortunately, even though the liver is a vital organ, it regenerates, as most of you already know, and half can be taken out of someone, which is called a 'Right Lateral Hepatectomy', meaning that 40% of their liver, in the right lobe, will be removed.  Now, the liver is made up of two lobes, the right and the left.  What I didn't know, is that once someone gets a hepatectomy, and their liver will regenerate, the right lobe that gets removed does not grow back.  What grows, is the left lobe, and it grows to 90% of the right & left lobe combined, so a living donor will only have a left lobe, but a very large one.  And I, will only have a right lobe, but a very large one, as well.  This anomaly does not hinder the function of a 'normal' liver. And when I say 'normal', I mean the one you're born with (a right & left lobe).  Also, for those who become living donors, must get their gallbladder removed, since it's in such close proximity to the right lobe, which isn't really a big deal, I had my gallbladder removed laproscopically in 2006, due to 'sludge' that was accumulating in my gallbladder and causing me pain when I ate. 

Whew, my ankles are itching like crazy! I fear that they will start to bleed, or worse, swell up again. I'm scratching so much, they're scabs formed and I can't scratch those, because then I'll start to bleed like a stuffed pig!  I see my ankles everyday, but I do think they are swelling a little bit.  It's not just my ankles, though, I'm itching all over, it's driving me mad!  Anyways, I take the two remaining tests for medical clearance on the 26th of this month, and those are the two test I fear I won't do so good in.  It's an Echocardiogram and a CAT Scan of my heart.  When I had the Heart Catheterization done about 6 months ago, it didn't look good, or that was the impression I got from the Dr.'s.  So, after I get these two tests done on the 26th, I see the Pulmonologist on the 28th, and she will look at the results of all three tests and determine if I'm fit for surgery.  If she determines that I'm fit for surgery, and gives me medical clearance on the 28th, I will then see my Hepatologist shortly thereafter and I will be put on the 'active' list.  Once that happens, my living donor can be screened.  She will have to go to Mount Sinai for two days.  Day one is screening on blood type (which I know is compatible), going over any previous medical history (and this person has no prior medical history, which is more than I think a lot of people can say!), and an EKG, and blood work to rule out any diseases that would make her unfit as a candidate.  Once that is done, and everything comes back good, then she'll have to go in for Day two of screening, which is more intense things, such as MRI, Ultrasound of the liver, CAT Scan of the liver, viewing the arteries of her liver to see if they would line up correctly with mine, and this all takes two weeks.  She also would be speaking to a counselor that would be assigned to her, to ensure that she's doing this on her own free will, not being  coerced in any way, and that she's aware of the risks, and that she's doing this voluntarily.  That's the part that I'm most afraid of.  I've tried to educate her as much as possible to make sure that she's fully aware of what she's getting herself into, and if these are risks she's willing to take.  Now, she's family and I will always love her, regardless.  However, I'd be lying if I said that I knew she was a match, then decided that the risks were too great for her and for that reason, she decides not to go through the procedure, which I'm sure happens at the clinic a lot.  This is why it's pertinent not to put all my eggs in one basket, so to speak.  Another family member has offered to be screened, if, for any reason, this does not happen with the first person getting screened, but she's had prior liver problems, and I don't think she'll be able to donate.  I spoke to my Dr. about it, and he said she'd have to get a liver biopsy done first.  It's also my job, as the recipient, that the donor be fully informed of what they're getting themselves into, and be prepared for it.  I feel like, if anything, I'm discouraging people from wanting to be my donor.  I just feel like I don't want anybody to risk themselves for me.  I know I can't keep thinking this way, it's just negative thoughts, but, in a way, it's also the truth.  Mount Sinai has done many successful living donor transplants, and the chance of things going wrong for the donor are slim.  This is why a potential candidate must get heavily screened, to ensure that the procedure will go well for them.  This is not something that should be rushed, whatsoever.  It's strange that I'm discouraging people to get screened just because I'm the only one who's benefiting from this...certainly not the donor!  It's not going to be easy for me, though, and I know this.  I just feel like, if anything goes wrong with me during the transplant, I would hate to leave that burden on the person who risked their lives for me...all in vain.  People do die during transplantation, it's not that rare an occurrence.  In the booklet "What Every Living Donor Needs to Know!" says in the 'psychosocial effects' section is "Would you be able to accept that the recipient may die during surgery?  Not only do you have to deal with the grief of losing that person, but you have to focus on your healing, as well."  Now, these were some really tough things to read and think about, being that the 'recipient' is me!

I guess these are just things that they have to let the living donor know, but I must stay positive and pray that when my day for the transplant comes, I will be waking from the procedure!  I can't think any other way.  But, before I go into surgery, there will be a room for all friends & family of mine to wait in, and I would like to speak to them before I go in.  I can only imagine what kind of a talk I will have with everyone who would be there.  I know it will be in my head that these may be the last words that I say to my loved ones.  The operation is 6-12 hr's, and a Dr. will come out periodically to let my family know how the surgery is going.  And I expect most of my family to be there, as well, to keep abreast of what's going on.  All I ask, is that I wake up to lots of flowers in my recovery room!  I would like that a lot!  To wake up and smell fresh flowers all around me, inspiring me with the scent of life!

Till this point, I've been very impatient on getting this transplant over with, but now that it may be so near, I feel like things are happening so fast!  But I also feel like it's taking forever, it's hard to explain.  I've been living with Cirrhosis for 4, almost 5 years now, and it's only gotten worse over that period of time.  It'll be such a relief to know that once I get my transplant, I will no longer have this accursed Cirrhosis!

Well, that's all for now, I will write to let you all know how the two tests go on August 26th.  Till next time...

Adding to the top of the mountain...

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You know the little yodeling man in 'The Price Is Right"? I feel like that little man going up and up until no end...well, if you know the game, the man eventually will fall from his 'high mountain' and just disappear. Well, I'm not disappearing!

A new, and at the same time, old problem has arisen in my life.  For those who know me personally, then they know the story about my teeth.  For those who don't know me or don't know the story, here it is:

When I was 19 year's old, I went to a dentist. This was a long time coming...at this point in my life, I was not doing anything good! I was on a very long drug binge, and my teeth just started to literally crack in half.  I feared going to the dentist, as may people do, and neglected the 'oral hygiene' that is so vital to everyone, especially someone that was my age!  So, reluctantly, due to pain in my teeth that the substances I was abusing would no longer cover, I went to the dentist.  I left there in tears.

When I saw this 'dentist' (and I refer to him as such, for reasons that will soon become clear), he determined that I needed 19 of my teeth pulled! Now, I knew that my teeth were bad...but I didn't know they were that bad! So, without any knowledge of what a 'bridge, dental implants or even the word extraction' was, I let him begin this process of pulling out the 19 out of about 30 teeth that I was born with.  He pulled 5 teeth that day, and I went to (at the time 'boyfriend', presently my ex-husband) Steve's job, which was only a few blocks away and told him what the dentist said, my gums in stitches, my face in tears.  The 'plan' that my dentist told me was to have all these 19 'bad' teeth pulled and get partial dentures. I thought it would be great, that I would no longer have to worry about pain in my mouth & I would have teeth again.  I couldn't have been more wrong.


So, time passed, as I continued to see this dentist, he eventually pulled all of the 19 teeth, and I healed and got the partial dentures.  They felt like having, well, a foreign object in my mouth.  That's exactly what partial dentures are!  They're painful, I couldn't even imagine ever eating with those 'torture devices' in my mouth, not to mention the spitting while talking, and all of this other gross stuff.  So, learning the hard way, I stood with the partial dentures for a while, until I spoke to someone and they told me what a bridge was.  That they could make one piece of false teeth that were permanent, or semi-permanent, anchored by my real teeth underneath, and that the teeth underneath didn't need to be in 'excellent' condition, and I should talk to my dentist about it.  So I did.  I asked him what exactly a 'bridge' was and he explained it all to me and then mentioned "you never said that you wanted to do a bridge", and that's because he never told me what a bridge was!! How was I, a young, naive, 19 year old, supposed to know what a 'bridge' is? So, he now said to me "Your insurance will not pay for this, and it will cost $500 a tooth". I agreed to this, and got my first bridge done on some of the last remaining teeth I had left in my head.  I then needed to get a new partial denture to accommodate this new bridge, and I loved it! It was the closest thing that I had to having my own teeth again! I then got pregnant, had my son, and had bigger things to worry about than my teeth.  So they had to take a 'backseat' for that time being. And they did.


About five years passed, I went to a local dentist who was very nice and had a completely different attitude from my old dentist.  This dentist stressed how important it was to keep my own teeth, and wondered...'Why, at such an early age, did this dentist deem it necessary to pull 19 of my teeth?'  He wanted to see the original X-rays from before I had all of these teeth pulled.  I went back to my old dentist and he refused to give me the X-rays unless I paid him $50.  I did.  And when I took the X-rays to my new dentist...I left there in tears, once again.  He told me that out of the 19 teeth that I had pulled, he saw only 6 that were 'beyond the point of fixing'.  Meaning, that I had 13 teeth unnecessarily pulled!  That's called 'medical malpractice' and this 'dentist' could have had his medical license taken away from him.  I went to a lawyer, armed with the X-rays and letter from my new dentist, and the lawyer said that I absolutely had a case.  However, the statute of limitations had ran out from the first three years after he had pulled my teeth.  So, legally, there was nothing that I could do, even though what this 'dentist' did was criminal, and I could (and should) have gotten all the money necessary to get dental implants and, at the very least, try to correct this horrible wrong that he did so long ago.  But, that option had long expired; I found out about this too late.  I was now stuck with the burden of caring for what little (I believe, at this point, it was 7) teeth that I had left in my head, and had to accept the fact that I would never be the same again...that the bone where missing teeth were had atrophied, and would continue to do so, and the only option to get teeth that would not come out and feel comfortable in my head were dental implants.  Now, anyone who knows about dental implants, knows that this is no small procedure.  And at my age, or even the age that I was (which was about 24), I would need bone grafting and a sinus lift to 'rebuild' the bone that had deteriorated in my mouth and jaw in order to sustain the impact of the drilling and the screws that go into the jawbone, to rebuild the bone that had healed over all the missing 'pockets' where my teeth used to be.  And, better yet, ALL of this work is considered to be 'cosmetic' and my insurance would not pay a cent for it! Even at my age, and especially due to the fact that I already had so many missing teeth, the only option my insurance provided was to get full dentures...it does not matter how young I am, or that I would be stuck wearing dentures for the rest of my life! 


So, that brings us to the now.  And the 'now' is this...I have 2 bridges in my mouth.  One of them, is a 3 tooth bridge, which is pretty much one piece, but three separate crowns all with little 'stubs' of teeth underneath all three of them.  The second bridge, is more important.  It has four little 'stubs' of teeth underneath it that is anchoring the seven tooth bridge (meaning, one tooth is there, one is not, one is there, one is not, one is there....etc. but it must end with one tooth there, to end the 'anchoring' and secure the bridge).  So these four 'stubs' underneath this seven tooth bridge, I cannot see, nor can an X-ray see the state of these 'stub teeth' cause the bridge is made of metal w/porcelain.  Well, two days ago, this 'bridge' came out (it isn't the first time, when it would come out, I would just glue it back in) but I noticed when it came out, that the condition of the 'stub' teeth that anchor this bridge were in horrible shape.  One of them, in particular, which is in the back and is the last tooth that anchors the bridge, was wiggling back & forth and I felt a dull pain (which I shouldn't since those four 'stub' teeth all have root canals done on them) so, I went to a dentist, and the only option I have to save the ten front teeth that I have, would be to have the four 'stub' teeth underneath pulled, get a sinus lift, bone grafting, and dental implants put in lieu of the 'stub' teeth.  This is a very serious procedure.  It's excruciatingly painful, and super expensive.  It would cost roughly $15,000.  And, as of right now, that's only half the battle.  I would need medical clearance for a procedure like this to be done.  I'm almost certain that I wouldn't get it.  As of right now, my most recent blood work shows that my White Blood Cell count is 1.9 which is dangerously low. A normal count should be in the reference range from 4.5 to 11.0.  Also, my platelets are very low, as well.  They are 47, and the normal reference range is 150 to 450.  This is very bad to have, since not only is my blood like water, and I bleed like a stuffed pig, even from the slightest pick of a scab, due to the low platelet count, but I can't fight off infection & heal properly because of the dangerously low White Blood Cell count.  These are the issues I am now facing.


Just when I thought that my brain could possibly not absorb any more BS, this problem raises it's ugly head at the most awful moment! So what I am going to be forced to do, is 'wear this bridge till the wheels fall off', meaning I will keep it in until this tooth falls out on it's own...and when that does happen, since it is the last tooth in the back anchoring this seven tooth bridge, I will have to have the bridge altered to a five tooth bridge, and keep that in, for the time being.  This would be only a very temporary solution to a greater problem.  I've seen the teeth underneath the bridge and it ain't pretty! However, they are not rocking back & forth, so I will not let them get pulled until they, too, eventually fall out.  My biggest concern is, will I get this transplant before my 'stub' teeth fall out?  Will I be able to get medical clearance for this procedure, and even if I was to get medical clearance for this prior to my transplant, will it heal properly?  Is this even an option to just 'come up' with the $15,000 this will cost? I know, of all people and my experiences, how shady dentists can be.  This dentist that I saw yesterday said, and I quote "It would be nice to get medical clearance for this, but we can do this in a hospital with a medical team on standby".  WTF?!? It would 'be nice' to get medical clearance?  Meaning, he'll just take the $15,000 if I don't have medical clearance, and I may die from blood loss, or it may get infected and my body won't be able to heal it?  This is a 'one shot' deal.  They only go in once, they are not going to 'open up my jaw' if it gets infected to fix it, this will all cost more money if that has to happen, which the odds of it happening in my case, I would think, are pretty damned high.  


So, I'm pretty much at a loss on what to do about this.  First off, I am pleading to anyone reading this who thinks that they can help, financially, towards fixing the teeth I have left, or if they know of a dentist who would be willing to help me at a more reasonable cost.  Now, I would need a sinus lift, bone grafting, dental implants with the abutments, and, finally, a new 7 tooth bridge once (and only if it's possible to raise my WBC count and if my Dr. says I have a reasonable chance of doing this successfully) everything has healed.  If anyone reading this thinks that they know of a better solution for this problem, or is a dentist who wishes to see me in the NYC tri-state area (or if you are in another state, I would be willing to fly there and see another dentist if they are willing to give me a very reasonable price, but remember, that it must be worth my time to fly there, spend money on a flight & hotel and all of that). Please contact me if you think that you can help, or if you know of anyone who can help...I really hate to do this, but I think as of right now, I'm going through more than enough issues, medically, emotionally and every and any other way possible, and I need the help.  Thanks for reading...