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!

Thursday, July 28, 2011

Adding to the top of the mountain...



You know the little yodeling man in 'The Price Is Right"? I feel like that little man going up and up until no end...well, if you know the game, the man eventually will fall from his 'high mountain' and just disappear. Well, I'm not disappearing!

A new, and at the same time, old problem has arisen in my life.  For those who know me personally, then they know the story about my teeth.  For those who don't know me or don't know the story, here it is:

When I was 19 year's old, I went to a dentist. This was a long time coming...at this point in my life, I was not doing anything good! I was on a very long drug binge, and my teeth just started to literally crack in half.  I feared going to the dentist, as may people do, and neglected the 'oral hygiene' that is so vital to everyone, especially someone that was my age!  So, reluctantly, due to pain in my teeth that the substances I was abusing would no longer cover, I went to the dentist.  I left there in tears.

When I saw this 'dentist' (and I refer to him as such, for reasons that will soon become clear), he determined that I needed 19 of my teeth pulled! Now, I knew that my teeth were bad...but I didn't know they were that bad! So, without any knowledge of what a 'bridge, dental implants or even the word extraction' was, I let him begin this process of pulling out the 19 out of about 30 teeth that I was born with.  He pulled 5 teeth that day, and I went to (at the time 'boyfriend', presently my ex-husband) Steve's job, which was only a few blocks away and told him what the dentist said, my gums in stitches, my face in tears.  The 'plan' that my dentist told me was to have all these 19 'bad' teeth pulled and get partial dentures. I thought it would be great, that I would no longer have to worry about pain in my mouth & I would have teeth again.  I couldn't have been more wrong.


So, time passed, as I continued to see this dentist, he eventually pulled all of the 19 teeth, and I healed and got the partial dentures.  They felt like having, well, a foreign object in my mouth.  That's exactly what partial dentures are!  They're painful, I couldn't even imagine ever eating with those 'torture devices' in my mouth, not to mention the spitting while talking, and all of this other gross stuff.  So, learning the hard way, I stood with the partial dentures for a while, until I spoke to someone and they told me what a bridge was.  That they could make one piece of false teeth that were permanent, or semi-permanent, anchored by my real teeth underneath, and that the teeth underneath didn't need to be in 'excellent' condition, and I should talk to my dentist about it.  So I did.  I asked him what exactly a 'bridge' was and he explained it all to me and then mentioned "you never said that you wanted to do a bridge", and that's because he never told me what a bridge was!! How was I, a young, naive, 19 year old, supposed to know what a 'bridge' is? So, he now said to me "Your insurance will not pay for this, and it will cost $500 a tooth". I agreed to this, and got my first bridge done on some of the last remaining teeth I had left in my head.  I then needed to get a new partial denture to accommodate this new bridge, and I loved it! It was the closest thing that I had to having my own teeth again! I then got pregnant, had my son, and had bigger things to worry about than my teeth.  So they had to take a 'backseat' for that time being. And they did.


About five years passed, I went to a local dentist who was very nice and had a completely different attitude from my old dentist.  This dentist stressed how important it was to keep my own teeth, and wondered...'Why, at such an early age, did this dentist deem it necessary to pull 19 of my teeth?'  He wanted to see the original X-rays from before I had all of these teeth pulled.  I went back to my old dentist and he refused to give me the X-rays unless I paid him $50.  I did.  And when I took the X-rays to my new dentist...I left there in tears, once again.  He told me that out of the 19 teeth that I had pulled, he saw only 6 that were 'beyond the point of fixing'.  Meaning, that I had 13 teeth unnecessarily pulled!  That's called 'medical malpractice' and this 'dentist' could have had his medical license taken away from him.  I went to a lawyer, armed with the X-rays and letter from my new dentist, and the lawyer said that I absolutely had a case.  However, the statute of limitations had ran out from the first three years after he had pulled my teeth.  So, legally, there was nothing that I could do, even though what this 'dentist' did was criminal, and I could (and should) have gotten all the money necessary to get dental implants and, at the very least, try to correct this horrible wrong that he did so long ago.  But, that option had long expired; I found out about this too late.  I was now stuck with the burden of caring for what little (I believe, at this point, it was 7) teeth that I had left in my head, and had to accept the fact that I would never be the same again...that the bone where missing teeth were had atrophied, and would continue to do so, and the only option to get teeth that would not come out and feel comfortable in my head were dental implants.  Now, anyone who knows about dental implants, knows that this is no small procedure.  And at my age, or even the age that I was (which was about 24), I would need bone grafting and a sinus lift to 'rebuild' the bone that had deteriorated in my mouth and jaw in order to sustain the impact of the drilling and the screws that go into the jawbone, to rebuild the bone that had healed over all the missing 'pockets' where my teeth used to be.  And, better yet, ALL of this work is considered to be 'cosmetic' and my insurance would not pay a cent for it! Even at my age, and especially due to the fact that I already had so many missing teeth, the only option my insurance provided was to get full dentures...it does not matter how young I am, or that I would be stuck wearing dentures for the rest of my life! 


So, that brings us to the now.  And the 'now' is this...I have 2 bridges in my mouth.  One of them, is a 3 tooth bridge, which is pretty much one piece, but three separate crowns all with little 'stubs' of teeth underneath all three of them.  The second bridge, is more important.  It has four little 'stubs' of teeth underneath it that is anchoring the seven tooth bridge (meaning, one tooth is there, one is not, one is there, one is not, one is there....etc. but it must end with one tooth there, to end the 'anchoring' and secure the bridge).  So these four 'stubs' underneath this seven tooth bridge, I cannot see, nor can an X-ray see the state of these 'stub teeth' cause the bridge is made of metal w/porcelain.  Well, two days ago, this 'bridge' came out (it isn't the first time, when it would come out, I would just glue it back in) but I noticed when it came out, that the condition of the 'stub' teeth that anchor this bridge were in horrible shape.  One of them, in particular, which is in the back and is the last tooth that anchors the bridge, was wiggling back & forth and I felt a dull pain (which I shouldn't since those four 'stub' teeth all have root canals done on them) so, I went to a dentist, and the only option I have to save the ten front teeth that I have, would be to have the four 'stub' teeth underneath pulled, get a sinus lift, bone grafting, and dental implants put in lieu of the 'stub' teeth.  This is a very serious procedure.  It's excruciatingly painful, and super expensive.  It would cost roughly $15,000.  And, as of right now, that's only half the battle.  I would need medical clearance for a procedure like this to be done.  I'm almost certain that I wouldn't get it.  As of right now, my most recent blood work shows that my White Blood Cell count is 1.9 which is dangerously low. A normal count should be in the reference range from 4.5 to 11.0.  Also, my platelets are very low, as well.  They are 47, and the normal reference range is 150 to 450.  This is very bad to have, since not only is my blood like water, and I bleed like a stuffed pig, even from the slightest pick of a scab, due to the low platelet count, but I can't fight off infection & heal properly because of the dangerously low White Blood Cell count.  These are the issues I am now facing.


Just when I thought that my brain could possibly not absorb any more BS, this problem raises it's ugly head at the most awful moment! So what I am going to be forced to do, is 'wear this bridge till the wheels fall off', meaning I will keep it in until this tooth falls out on it's own...and when that does happen, since it is the last tooth in the back anchoring this seven tooth bridge, I will have to have the bridge altered to a five tooth bridge, and keep that in, for the time being.  This would be only a very temporary solution to a greater problem.  I've seen the teeth underneath the bridge and it ain't pretty! However, they are not rocking back & forth, so I will not let them get pulled until they, too, eventually fall out.  My biggest concern is, will I get this transplant before my 'stub' teeth fall out?  Will I be able to get medical clearance for this procedure, and even if I was to get medical clearance for this prior to my transplant, will it heal properly?  Is this even an option to just 'come up' with the $15,000 this will cost? I know, of all people and my experiences, how shady dentists can be.  This dentist that I saw yesterday said, and I quote "It would be nice to get medical clearance for this, but we can do this in a hospital with a medical team on standby".  WTF?!? It would 'be nice' to get medical clearance?  Meaning, he'll just take the $15,000 if I don't have medical clearance, and I may die from blood loss, or it may get infected and my body won't be able to heal it?  This is a 'one shot' deal.  They only go in once, they are not going to 'open up my jaw' if it gets infected to fix it, this will all cost more money if that has to happen, which the odds of it happening in my case, I would think, are pretty damned high.  


So, I'm pretty much at a loss on what to do about this.  First off, I am pleading to anyone reading this who thinks that they can help, financially, towards fixing the teeth I have left, or if they know of a dentist who would be willing to help me at a more reasonable cost.  Now, I would need a sinus lift, bone grafting, dental implants with the abutments, and, finally, a new 7 tooth bridge once (and only if it's possible to raise my WBC count and if my Dr. says I have a reasonable chance of doing this successfully) everything has healed.  If anyone reading this thinks that they know of a better solution for this problem, or is a dentist who wishes to see me in the NYC tri-state area (or if you are in another state, I would be willing to fly there and see another dentist if they are willing to give me a very reasonable price, but remember, that it must be worth my time to fly there, spend money on a flight & hotel and all of that). Please contact me if you think that you can help, or if you know of anyone who can help...I really hate to do this, but I think as of right now, I'm going through more than enough issues, medically, emotionally and every and any other way possible, and I need the help.  Thanks for reading...

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