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!

Tuesday, September 6, 2011

The Next Painful Months Ahead...


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! ;-)
Posted by natwillsbrg at 7:22 AM
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