My Liver Disease Journey...

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

Friday, October 21, 2011

What a bummer...

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:
Ok, till next time....

Wednesday, October 12, 2011

My Cirrhosis may have a name...

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...