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!

Monday, July 11, 2011

My Appt. today...



Well, my feet (as you can see) are the size of tubs, I noticed yesterday that my ankles were a little swollen and I woke up to this! For those who don't know me, I have (had) nice, slender feet & ankles, but right now I don't. The skin's peeling on them too, cause the skins stretched so much so fast. They are ITCHING LIKE CRAZY! I have this powder stuff that tastes God awful, so I usually don't drink it, but it's for the itching & I've been scratching the hell out of my ankles & feet. Oddly, my chest has been itching, too, so I will take this 'powder junk' for the next few days, see if it helps. Well, basically, the Dr. said that she wants 3 non-invasive tests done (CAT Scan, Breathing Test & Echocardiogram) to make sure that the Viagra that I've been on is helping with my Pulmonary Arterial Hypertension (PAH) since I've had my Heart Catheterization done. My PAH must be under control before I get on the 'active' liver transplant list because if it's not, I will not survive the surgery, the risks would be too high, they wouldn't even try. So, the Dr. also agreed w/me that my MELD should be WAY higher than 12, which is what it's at now, due to my liver enzymes only. When they factor in the PAH, my MELD will be higher. So, I will see her in a month, and during this month, I will get these 3 tests done. When I see her, hopefully everything will look good, my MELD will be raised (I believe it will be raised regardless) so I can be on the active list. I feel exhausted, so I'm going to rest for now...the Dr. also told me to take double the dose of the water pills I'm on now. Hopefully, my feet & ankles will not be swollen anymore, due to the raise in my water pill dosage. For those reading out there, please click on the "Follow" button on the right of this page and it will ask you to sign in, it will say google, but you can sign into any email account you have, it doesn't have to be gmail, just put in your email & password & you will be following me, and I can see you following me. Wish me luck on these tests, I have to call tomorrow and schedule them. Will keep an update on when the tests get done. Thx! Till next time...
Posted by natwillsbrg at 2:52 PM
Labels: , , , , , ,

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)