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, June 8, 2012

Getting listed in FL...

I must admit that I was a little upset about the way things are unfolding here in FL.  There's many tests that I must get done in order to get listed here.  I really wish that I'd have known that fact prior to my arriving here & rearranging my entire life.  I could have gotten all of these tests done before I changed my address & moved out here.  I was expecting to come here & get listed ASAP.  However, that's just not the way things are turning out.

I must get a Colonoscopy, Mammogram, EKG, CT Scan, US-Liver Doppler (aka ultrasound) and blood work.  The most invasive test, by far, is the Colonoscopy.  I see no need to get that done, especially since I've had an Endoscopy done back in February of 2011.  However, if it was up to me, I'd choose to get none of these tests done & I'm not the doctor.

More red tape to go through and what's most shocking to me, is that this all seems just a little too familiar.  I'm used to all of these highly invasive tests, and having to 'jump through hoops' to achieve the desired goal.  So, I was waiting for an authorization for the CT Scan, which, fortunately, came in yesterday and I've now scheduled all of these tests.

I go for the CT Scan, EKG & Ultrasound on June 16th (just my luck, the day after Sam leaves), and the Mammogram on June 18th.  I was fortunate enough to find another Gastrointerologist who will see me a lot sooner than the GI Dr at the Transplant Clinic would.  I have an appointment on June 12th which is a consultation for the Colonoscopy, basically explaining to me what will happen (as if I don't already know, or if I really want to know), then scheduling the actual test to be done at the Outpatient Clinic of Broward General Medical Center.  The procedure should be done about 2-5 days after my consultation on the 12th, the GI Dr is aware that time is of the essence and it's crucial that this test get done ASAP.  The GI Dr that I was referred to from the Transplant Clinic, had the earliest appointment for a consultation on July 2nd!!  That's just completely unacceptable.  So, I took it upon myself to find another GI Dr that would do the Colonoscopy sooner, and was fortunate enough to have found one who, coincidentally, will do the procedure at the very same hospital that my transplant will be done at, Broward General Medical Center (BGMC).

Once these tests are completed, I will see the surgeon at BGMC and will be listed as of that day.  Once listed, all I have to do is wait for the phone call to come.  I spoke to a woman who's 2 months post-op and her MELD score was same as mine (22) and she was listed for 3 weeks and got the call that changed her life forever.  I can only hope that it takes a mere 3 weeks for me.

It feels surreal, like a goal that has never been attainable to me.  I think that reality of it all is sinking in and it envelops my every thought and action.  I just can't stand the waiting!  It's like the angel of death hanging over my head.  Then, I stop and think, "Do I even feel like I'm dying?", "Am I dying?  Or do I just think that I'm sick because a Dr told me that I am?"  All of these thoughts, and more, come to me.  I push them aside and try to stay focused to the desired goal.  But it's been so long, that I don't even remember what the 'desired goal' is anymore.  Do I really want to have this surgery?  Is the quality of life after transplant something that I can, and/or would want to live with for the rest of my life?  What do I have left to accomplish on this world? What do I have to be alive for?

I have my son, family and friends, and I owe it to way too many people to let them down.  But, I never asked for this.  It's so hard because it's out of my hands, beyond my capabilities of controlling.  I think it's just coming to the understanding and acceptance that there's some things in life that no mortal can control.  Once that's been accepted, I mean fully accepted, then these questions that I think about will not be thought about.  Am I even making sense?  I feel myself getting more dim as time goes by and that's when it hits me that something is terribly wrong.  I just keep myself busy and keep my mind as active as possible to avoid it.

On a brighter note, my boyfriend, Sam, is coming today and will be with me for a week.  It's very nice to have my friends, family & loved ones here with me.  I really underestimated how important it is to have family support.  I'm very grateful that I have it.  I miss my son the most, and he will be here in about 2-3 weeks (June 26th), and will stay with me for a few days.  He'll be spending his 11th birthday here, and he's got loads of gift suggestions and I want to fulfill every one of them!  So, till next time...

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