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, December 16, 2011

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 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...

Tuesday, December 6, 2011

Taking a Second Shot...

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...