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!

Wednesday, August 24, 2011

Damned if I do & damned if I don't...



Holy crap!  This NEVER ends!!  My bridge was rocking back and forth yesterday, these are my front/side 7 teeth (it's all one piece) and it came out, and my worst fear came true.  One of the five shaved down teeth cracked off with it!  I didn't see it as such a big deal at the time, because I'm just thinking, the dentist will pull what little root of tooth is left, and will cut off the last 2 teeth of my 7 tooth bridge and make it into a 5 tooth bridge.  WRONG!!!

Maybe I shouldn't have been honest, but, I feel that with this stuff, honesty is the best policy.  So I went to a local dentist, who was very nice, and I told him that I have such serious health issues (which I was planning on holding back, because I just want the damned tooth out!), and, as expected, he asked for medical clearance to pull the root of the tooth.  I thought I was going to get it, it's just a root of a tooth, no big deal, after all, I've had 19 teeth pulled already, so I know what was coming,  plus, the tooth has(had) a root canal on it, so I don't feel a thing on it, I feel like if I took a pair of plyers, I could pull it out myself!  Well, my Transplant Dr. did sign the paper for clearance, and, sadly, he also faxed over my most recent blood work.  The dentist called once he received the fax, and could have knocked me over with a feather.

He said, with my platelet count being non-existent, along with my White Blood Cells, that there is NO WAY that he would be able to do the extraction.  He explained that I would bleed to death, the bleeding wouldn't stop, since a low platelet count means that I can't coagulate, and a non-existent WBC count means that I can't heal.  So, he gave me the number of the hospital, Brooklyn Hospital, and told me what was going to have to happen.  I would need to see the oral surgeon there, I would need a freakin blood transfusion to pump up the platelet count, then he will extract the lil stub of tooth!  Seems like an awfully lot of crap to go through just to get rid of a tiny root in my mouth!  This disturbs me a great deal.  I've never had a blood transfusion before, and I don't know if I want one.  I know blood gets screened more properly than it did in the past, but I just don't want to have to take those unneccesary risk.  All of that just to pull one lil tooth?!

I'm very depressed from all of this, my bridge is being supported by fixodent as of right now, and I can pull it down at any time.  I can't possibly walk around like this for a month, maybe more!  Who knows how long it will take to pump up my platelet count?!  Then, I'll have to have a damned emergency standby team there?  I feel like I'm losing it!  My dentist, and I can't blame him, cause he seems like a very nice man, and I wouldn't mind seeing him again, especially because he told me a few interesting things today about dental implants, and the bone grafting, and told me that if I get it done at this hospital, where I'm going to tomorrow, all I pay for is the materials for the dental implants, and with the implants, abutment and crown, it will be $900 per tooth.  That's a great price, compared to the $15,000 that other dentists charge, considering if I (and I do) wish to keep what little teeth I have left in my mouth, it would be about $3500, which my boyfriend told me that he can pay for (thank god for that!), and to get the process started, it would be about $1,200 to start the whole process to get the 4 implants that I will need.  However, I will not have any teeth in my head during this time.  My self-esteem has taken enough detramental blows, I just don't thing that I can walk around with no teeth in my head!  Even though I know that I will get a more 'permanent' solution to all these problems, but, even more crutial, is that if I need a damned blood transfusion for a simple extraction, when will I get clearance to do all of this other stuff?!  I don't see it happening anytime soon, so I just need to get this tooth extracted, and the dentist can then shave off the last 2 teeth, make my 7 tooth bridge into a 5 tooth bridge.  My upper partial-denture can be modified to add those 2 teeth, and that my insurance will cover all of it.

This is just another reminder of how damned sick I am, and how badly I want my health to be better again.  Such simple stuff that I take it for granted, that I think a lot of people take for granted, which is their health!  I always had the naive, childish attitude that I was young and nothing bad can happen to me.  I was never more wrong in my entire life. 

So, this root must get extracted, because if it doesn't, then it will get infected, and all hell will then break lose!  Damned if I do, and damned if I don't!  Till next time...
Posted by natwillsbrg at 4:20 PM
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