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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...
Thursday, July 28, 2011
Friday, July 22, 2011
But what do we say to the kids?...
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I'm having a little bit of a conundrum, or something of some such. For those out there who have undergone transplant, and had small children (when I say small, I mean under the age of 12 yrs old), what did you say to them? I've been using the 'don't ask, don't tell' method and it is proving to be a MASSIVE FAILURE! I think when my 'big day' comes, and I'm going to have to go under the knife, I do want to see him when I wake up, I do want to see his little smiling face, just in case, you know?
However, my child is a worrier. Just like his mommy! I was hospitalized in February, and I don't exactly remember how he found out that I was in the hospital, but he did. And I got a phone call, from my cellular phone, in my hospital bed, from my child's Guidance Counselor telling me that my son was vacant in school today. Vacant in the sense that he was clearly there, but not there. He was very empty and sad...and even in the over-crowded NYC Public Schools (where their can be up to 40 children per classroom), his teacher noticed this and pulled his aside to ask him what was wrong. He told her "I'm sad because my mommy is in the hospital because her heart hurts". Of course, as any parent would, hearing this tore me to shreds. I was actually being hospitalized for Ascites & chest pains, this is what gave him the idea that my 'heart hurts', since he clearly already sees my big belly, and to him, for now, that's almost normal to him. It's become normal to me, it's a part of my life I cannot change. I've learned to simply live around it, stretch my back when it hurts like hell, wear clothing that's not tight like I used to like to wear. I call them my 'tummy illusion' outfits! And my closet is full of them! Being a 30 year old female isn't easy with Cirrhosis. I'm not, I guess, what you would call the 'typical' Cirrhotic. By 'typical' I mean, statistically, Cirrhotic's are male, over 40. So, this has been a particular blow on my ego! I don't mean to sound shallow, but I've almost grown accustomed to people telling me that I'm pretty--it's also annoying, when egotistical-males whistle at you walking down the street--but, to be honest (like I always do here!), I kind of miss that. I've always took pride in my looks, grateful in the fact that by just rolling out of bed, I don't need a lot of make-up, just a little lip gloss, sometimes not even, and people would STILL say that I was pretty. I'm not going to be pretty anymore...or at least that's how I feel. I feel like I'm going to be a freak with a freakish scar trailing accross my body, never living the way I was, never being the same, and lately, I have asked myself: What kind of quality of life will I have after Transplant? Do I want that kind of life?'
Well, I know I've now strayed off the beaten path (lol) of the title of this particular page, so I will get back to what I wish from all of you.
I feel like my child is going to see me and completely freak out, get depressed, flunk school, all of the things that I, too, went through as a child seeing one of my parents die. Which, either way you look at it, in a small way, or a big way, a part of me is going to die once I get my Transplant, and I don't want it to, but, hey, that's the price tag for living, isn't it? Maybe I'm expecting the worse out of all of this...maybe my 'pessimistic negitivity' is clouding my better judgment. I don't want to have my son find out about all of this like I did...like BAM ...this is what's happening to you, like it or not! So, I now ask all of you, I rephrase my previous statement, and I am asking EVERY parent out there, Transplant patient or not; How would you 'break this' news to your Child? Thanks for listening, your opinion matters to me! Till Next Time...
I'm having a little bit of a conundrum, or something of some such. For those out there who have undergone transplant, and had small children (when I say small, I mean under the age of 12 yrs old), what did you say to them? I've been using the 'don't ask, don't tell' method and it is proving to be a MASSIVE FAILURE! I think when my 'big day' comes, and I'm going to have to go under the knife, I do want to see him when I wake up, I do want to see his little smiling face, just in case, you know?
However, my child is a worrier. Just like his mommy! I was hospitalized in February, and I don't exactly remember how he found out that I was in the hospital, but he did. And I got a phone call, from my cellular phone, in my hospital bed, from my child's Guidance Counselor telling me that my son was vacant in school today. Vacant in the sense that he was clearly there, but not there. He was very empty and sad...and even in the over-crowded NYC Public Schools (where their can be up to 40 children per classroom), his teacher noticed this and pulled his aside to ask him what was wrong. He told her "I'm sad because my mommy is in the hospital because her heart hurts". Of course, as any parent would, hearing this tore me to shreds. I was actually being hospitalized for Ascites & chest pains, this is what gave him the idea that my 'heart hurts', since he clearly already sees my big belly, and to him, for now, that's almost normal to him. It's become normal to me, it's a part of my life I cannot change. I've learned to simply live around it, stretch my back when it hurts like hell, wear clothing that's not tight like I used to like to wear. I call them my 'tummy illusion' outfits! And my closet is full of them! Being a 30 year old female isn't easy with Cirrhosis. I'm not, I guess, what you would call the 'typical' Cirrhotic. By 'typical' I mean, statistically, Cirrhotic's are male, over 40. So, this has been a particular blow on my ego! I don't mean to sound shallow, but I've almost grown accustomed to people telling me that I'm pretty--it's also annoying, when egotistical-males whistle at you walking down the street--but, to be honest (like I always do here!), I kind of miss that. I've always took pride in my looks, grateful in the fact that by just rolling out of bed, I don't need a lot of make-up, just a little lip gloss, sometimes not even, and people would STILL say that I was pretty. I'm not going to be pretty anymore...or at least that's how I feel. I feel like I'm going to be a freak with a freakish scar trailing accross my body, never living the way I was, never being the same, and lately, I have asked myself: What kind of quality of life will I have after Transplant? Do I want that kind of life?'
Well, I know I've now strayed off the beaten path (lol) of the title of this particular page, so I will get back to what I wish from all of you.
I feel like my child is going to see me and completely freak out, get depressed, flunk school, all of the things that I, too, went through as a child seeing one of my parents die. Which, either way you look at it, in a small way, or a big way, a part of me is going to die once I get my Transplant, and I don't want it to, but, hey, that's the price tag for living, isn't it? Maybe I'm expecting the worse out of all of this...maybe my 'pessimistic negitivity' is clouding my better judgment. I don't want to have my son find out about all of this like I did...like BAM ...this is what's happening to you, like it or not! So, I now ask all of you, I rephrase my previous statement, and I am asking EVERY parent out there, Transplant patient or not; How would you 'break this' news to your Child? Thanks for listening, your opinion matters to me! Till Next Time...
Tuesday, July 19, 2011
A little more on the beginning...
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Well...even though my intro looks fine & dandy, I've gotten a lot of compliments on this site (thanks 2 u all!), but I'm gonna start from when it started..it came from a bit of thinking WAY back on a time when I didn't know what Cryptogenic Cirrhosis was...someone I sent a message to who's read my blog, as well, who is a recepient of a liver, said I was handling this in a very positive way for all that I've been through...this is the message I wrote him... He said surprised how well I'm handling this for someone who's been 'through the ringer' so to speak by Dr's! My reply was thus, w/my added comments I now tell you from the beginning:
Thanks! Not to say I'm an angel...I freaked out...I cried like a baby...having all of my 'past deeds' thrown in my face, having 'strangers' I didn't even know determining if I was 'worthy' of a liver and life, telling me that there's ppl out there who ...have NEVER had substance abuse prob's & need a liver, so why should I get one, even though I've been sober for a year? It made me feel like they were playing God w/my life! These are things that I can't think about because everytime I do, I cry...& it will destroy me from the inside. My counselor tells me, 'You have a yr sober...all u can do is look to the future' and I told her 'But I DESERVE THAT CHANCE TO HAVE A FUTURE! I HAVE A 10 YR OLD SON WHO NEEDS ME' and I just couldn't keep control of myself...so...being raised 'strict Catholic' having religion shoved down my throat during my youth, when my dad died when he ws 43 yrs old & I was 12, I turned rebelious. I cut off all my hair, started doing drugs and realized I was believing in a 'God' that I didn't even know...was just a name....he didn't exist. Throughout the rest of my yrs until VERY recently...I've found my Catholisizm again, & I don't question it, because I NEED IT! I need that faith to wake up in the morning...2 keep going! Whew! That was hard!! My face is all wet!
Now, I just cut & pasted that! I will gve u a lil more background. In about 2006/7ish, was told my ALT, AST & Alkaline Phosphotase were VERY HIGH & I would need to see a GI Dr. In 2006 (which may have been unrelated) I had my Gallbladder removed due to 'sludge'. Was havin pains everytime I ate, first I thought it was the foods I was eatin, so I cut out the fried/unhealthy junk...then I noticed a glass of water & slice of bread was doing the same thing...so I reluctantly went to the Dr. They did an ultrasound. I was sent a letter saying "You need to be referred to a ___surgery___ Dr. & the word "Surgery" was written on a blank line in ink. Hmm?? Freaked out for 2 wks, they wouldn't ans any questions on the phone when I asked "Wht surgery Dr? Wht did u find?" I'm thinkin the worse. Cancer? Tumors? So I went to the appt, Dr said I had sludge in my gallbladder...could give me prevacid, tht would relieve the symptoms, but the sludge ain't goin anywhere & at a young age (26), he recommended I have it removed, it would be better to have it done elective, while I was 'healthy' rather than if it swells or gets worse, which he said in time, it will. I figured...makes sense...no biggie...they did it laproscopically...I healed nicely (Kinda freaked when i saw staples & a scar btwn my boobs(lol!) But things were good....or so I thought. Dr. told me everything inside me looked good, liver was nice, smooth & pink...all was well, I healed. about a yr later, my AST, ALT&Alkaline Phosphotase were VERY high (I rmmbr the Alkaline Phosphotase were 1,098, norm being 40-150, they thought it was a test malfunction, false result, did it again, it came back 998) was told to see a GI dr., did tht, got the MRI, ultrasound, couldn't see nuthin, just tht my liver was enlarged, didn't know why. (noticed a lil belly) then...got the biopsy, was told it would answer ALL MY QUESTIONS, I WOULD FINALLY KNOW WHT THE BLOOD TESTS REFUSED TO TELL THEM! That was AWFUL!! I remember sayin, "If I ever need another liver biopsy, I'll jst let myself die first before going through that again!" Was all anxious to know the results of biopsy, results said "Transition to Cirrhosis stage 3/4 modified Isaac's scale, fibrous septa, CONSISTENT W/CHRONIC HEP C" The GI Dr. tells me "ur biopsy raises more questions than answers" I'm like...WTF? He said he sent my blood work to 3 different labs...& the HCV test comes back negative, always has...even though I knew I had the Hep C antibodies(?) but NO VIRUS! I couldn't even transmit it, I was told...I had NO VIRUS...tests just reacted when tested for Hep C. He said there's a piece of the puzzle missing here, & he can no longer help me, I needed a liver specialist. Funny, cause he referred me WAYYY BACK THEN...IN 07 to the Dr. I'm seeing now, Dr. Schiano at Mt Sinai, he told me 'If u got liver disease, there's no better place to be" Called to make an appt, Dr. Schiano's sect's said "We don't take ur insurance...BYE!" Called my insur, got the 'run around' saw a Dr. who didn't know her ass from her elbow, started me on Diuhrettics (Lasix 20mg&Aldactone 50mg...WHICH I STILL TAKE TODAY! Was told that's a baby dose, I need more, the only reason my ankles & feet went down, u know, fr the pic in my blog, is cause my Dr. told me to DOUBLE the dose! I did, they went down, she said to go bck to my original dose) Went to Woodhull after seeing this 'private' Dr. for a while, got all the new tests (MRI, CAT, Ultrasound, etc), felt like "Why is this taking so long? The hepatologist, Dr. Nora Bergasa, was only at Woodhull on Mondays, so seeing her was far & few btwn." Wasted over a yr on seeing her, she finally had the pathologist who looked at my 07 biopsy & she told me "You don't have hepatic cirrhosis...nor do u have Alcoholic, Billiary, Auto-Immune, or ANY other kinds of Cirrhosis, we destroyed ur samples ruling those out...U have Cryptogenic Cirrhosis" I was like...YES! FINALLY A NAME TO WHT I HAVE! Googled Cryptogenic Cirrhosis only to find out it means "unknown Cirrhosis" GREAT! Finally, I got so sick& tired of waiting months to see this Dr. & she called me & said "I'm sending u to the Mt. Sinai Recanti/Miller Transplantation Center" (I would argue w/the Dr's at Woodhull "Wht's going on? I've been coming here for like over a yr...& YOU'VE DONE NOTHING!" The Dr. said "Get another MRI...then we will refer you to the Transplant Clinic, if u don't like that decision, seek a second opinion!" Like my insurance is gonna cover all this nonsense & surprisingly it did, but I went to Mt. Sinai) Dr. Bergasa told me "I have all of your records, I'm calling Mt. Sinai, sending them ur rec's, along w/my personal authorization as cheif of medicine at Metropolitan Hosp that u need a transplant" So, May 26, 2011 (3 days b4 my 30th b'day) I had my 'initial interview' where I cried in a room for like 4 hr's...telling of my med hist, they felt my spleen..I can actually SEE IT through my skin, all u gotta do is touch my skin & it feels like a rock underneath! Oh...Feb '11, was hosp for Ascites& trouble breathing, found out I had Pulmonary Arterial Hypertension, was referred to Belleview to get a Right Heart Catheterization...saw the referring Dr's at Woodhull...like 3 Cardiologists come in...frantically talkin, freakin me out! Tellin me of my PAH & how serious it was to have this PAH & Liver Cirrhosis) so, May 26, got the great news all about liver transplantation...left there feeling like an empty corpse w/no soul inside me...numb. So, I go to my appt's, right now, my PAH needs to be sorted out, got on Viagra for that, gonna get these 3 tests done (non-invasive... CAT scan, Xray & breathing test), got a MELD of 12 but the Pulmonologist at Mt. Sinai told me "ur DEF not a 12, ur PAH makes u a much higher risk".
I've accepted all this that I've been through. I don't have a choice. I have a 10yr old son & history is NOT going to repeat itself, my son WILL have his mother see him graduate high school, unlike my father's passing when I was 12. And the battle goes on...
Well...even though my intro looks fine & dandy, I've gotten a lot of compliments on this site (thanks 2 u all!), but I'm gonna start from when it started..it came from a bit of thinking WAY back on a time when I didn't know what Cryptogenic Cirrhosis was...someone I sent a message to who's read my blog, as well, who is a recepient of a liver, said I was handling this in a very positive way for all that I've been through...this is the message I wrote him... He said surprised how well I'm handling this for someone who's been 'through the ringer' so to speak by Dr's! My reply was thus, w/my added comments I now tell you from the beginning:
Thanks! Not to say I'm an angel...I freaked out...I cried like a baby...having all of my 'past deeds' thrown in my face, having 'strangers' I didn't even know determining if I was 'worthy' of a liver and life, telling me that there's ppl out there who ...have NEVER had substance abuse prob's & need a liver, so why should I get one, even though I've been sober for a year? It made me feel like they were playing God w/my life! These are things that I can't think about because everytime I do, I cry...& it will destroy me from the inside. My counselor tells me, 'You have a yr sober...all u can do is look to the future' and I told her 'But I DESERVE THAT CHANCE TO HAVE A FUTURE! I HAVE A 10 YR OLD SON WHO NEEDS ME' and I just couldn't keep control of myself...so...being raised 'strict Catholic' having religion shoved down my throat during my youth, when my dad died when he ws 43 yrs old & I was 12, I turned rebelious. I cut off all my hair, started doing drugs and realized I was believing in a 'God' that I didn't even know...was just a name....he didn't exist. Throughout the rest of my yrs until VERY recently...I've found my Catholisizm again, & I don't question it, because I NEED IT! I need that faith to wake up in the morning...2 keep going! Whew! That was hard!! My face is all wet!
Now, I just cut & pasted that! I will gve u a lil more background. In about 2006/7ish, was told my ALT, AST & Alkaline Phosphotase were VERY HIGH & I would need to see a GI Dr. In 2006 (which may have been unrelated) I had my Gallbladder removed due to 'sludge'. Was havin pains everytime I ate, first I thought it was the foods I was eatin, so I cut out the fried/unhealthy junk...then I noticed a glass of water & slice of bread was doing the same thing...so I reluctantly went to the Dr. They did an ultrasound. I was sent a letter saying "You need to be referred to a ___surgery___ Dr. & the word "Surgery" was written on a blank line in ink. Hmm?? Freaked out for 2 wks, they wouldn't ans any questions on the phone when I asked "Wht surgery Dr? Wht did u find?" I'm thinkin the worse. Cancer? Tumors? So I went to the appt, Dr said I had sludge in my gallbladder...could give me prevacid, tht would relieve the symptoms, but the sludge ain't goin anywhere & at a young age (26), he recommended I have it removed, it would be better to have it done elective, while I was 'healthy' rather than if it swells or gets worse, which he said in time, it will. I figured...makes sense...no biggie...they did it laproscopically...I healed nicely (Kinda freaked when i saw staples & a scar btwn my boobs(lol!) But things were good....or so I thought. Dr. told me everything inside me looked good, liver was nice, smooth & pink...all was well, I healed. about a yr later, my AST, ALT&Alkaline Phosphotase were VERY high (I rmmbr the Alkaline Phosphotase were 1,098, norm being 40-150, they thought it was a test malfunction, false result, did it again, it came back 998) was told to see a GI dr., did tht, got the MRI, ultrasound, couldn't see nuthin, just tht my liver was enlarged, didn't know why. (noticed a lil belly) then...got the biopsy, was told it would answer ALL MY QUESTIONS, I WOULD FINALLY KNOW WHT THE BLOOD TESTS REFUSED TO TELL THEM! That was AWFUL!! I remember sayin, "If I ever need another liver biopsy, I'll jst let myself die first before going through that again!" Was all anxious to know the results of biopsy, results said "Transition to Cirrhosis stage 3/4 modified Isaac's scale, fibrous septa, CONSISTENT W/CHRONIC HEP C" The GI Dr. tells me "ur biopsy raises more questions than answers" I'm like...WTF? He said he sent my blood work to 3 different labs...& the HCV test comes back negative, always has...even though I knew I had the Hep C antibodies(?) but NO VIRUS! I couldn't even transmit it, I was told...I had NO VIRUS...tests just reacted when tested for Hep C. He said there's a piece of the puzzle missing here, & he can no longer help me, I needed a liver specialist. Funny, cause he referred me WAYYY BACK THEN...IN 07 to the Dr. I'm seeing now, Dr. Schiano at Mt Sinai, he told me 'If u got liver disease, there's no better place to be" Called to make an appt, Dr. Schiano's sect's said "We don't take ur insurance...BYE!" Called my insur, got the 'run around' saw a Dr. who didn't know her ass from her elbow, started me on Diuhrettics (Lasix 20mg&Aldactone 50mg...WHICH I STILL TAKE TODAY! Was told that's a baby dose, I need more, the only reason my ankles & feet went down, u know, fr the pic in my blog, is cause my Dr. told me to DOUBLE the dose! I did, they went down, she said to go bck to my original dose) Went to Woodhull after seeing this 'private' Dr. for a while, got all the new tests (MRI, CAT, Ultrasound, etc), felt like "Why is this taking so long? The hepatologist, Dr. Nora Bergasa, was only at Woodhull on Mondays, so seeing her was far & few btwn." Wasted over a yr on seeing her, she finally had the pathologist who looked at my 07 biopsy & she told me "You don't have hepatic cirrhosis...nor do u have Alcoholic, Billiary, Auto-Immune, or ANY other kinds of Cirrhosis, we destroyed ur samples ruling those out...U have Cryptogenic Cirrhosis" I was like...YES! FINALLY A NAME TO WHT I HAVE! Googled Cryptogenic Cirrhosis only to find out it means "unknown Cirrhosis" GREAT! Finally, I got so sick& tired of waiting months to see this Dr. & she called me & said "I'm sending u to the Mt. Sinai Recanti/Miller Transplantation Center" (I would argue w/the Dr's at Woodhull "Wht's going on? I've been coming here for like over a yr...& YOU'VE DONE NOTHING!" The Dr. said "Get another MRI...then we will refer you to the Transplant Clinic, if u don't like that decision, seek a second opinion!" Like my insurance is gonna cover all this nonsense & surprisingly it did, but I went to Mt. Sinai) Dr. Bergasa told me "I have all of your records, I'm calling Mt. Sinai, sending them ur rec's, along w/my personal authorization as cheif of medicine at Metropolitan Hosp that u need a transplant" So, May 26, 2011 (3 days b4 my 30th b'day) I had my 'initial interview' where I cried in a room for like 4 hr's...telling of my med hist, they felt my spleen..I can actually SEE IT through my skin, all u gotta do is touch my skin & it feels like a rock underneath! Oh...Feb '11, was hosp for Ascites& trouble breathing, found out I had Pulmonary Arterial Hypertension, was referred to Belleview to get a Right Heart Catheterization...saw the referring Dr's at Woodhull...like 3 Cardiologists come in...frantically talkin, freakin me out! Tellin me of my PAH & how serious it was to have this PAH & Liver Cirrhosis) so, May 26, got the great news all about liver transplantation...left there feeling like an empty corpse w/no soul inside me...numb. So, I go to my appt's, right now, my PAH needs to be sorted out, got on Viagra for that, gonna get these 3 tests done (non-invasive... CAT scan, Xray & breathing test), got a MELD of 12 but the Pulmonologist at Mt. Sinai told me "ur DEF not a 12, ur PAH makes u a much higher risk".
I've accepted all this that I've been through. I don't have a choice. I have a 10yr old son & history is NOT going to repeat itself, my son WILL have his mother see him graduate high school, unlike my father's passing when I was 12. And the battle goes on...
Wednesday, July 13, 2011
The Route I choose to take...
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Well...this is a VERY slow process, however, I do believe that I have found my living liver donor. She is aware of the risks, not to say that she's bound and has to do this, but she has agreed after all that I could explain about the risks to her. So, I'm writing this page because I think now is the time to start my fundraising. I've had a few offers from organization's who are willing to help me, I think $10,000 is my goal to raise. I've done the math, and her rent & bills for 3 months, not to mention the fact that she has 3 children and would need Child Care costs, Transportation, & whatever else is deemed necessary for her to live for 3 months after her donation. My insurance (it's NY Law) covers her procedure of getting the Hepatectomy, however, I do not wish for her to lose her job and have to pay money out of pocket for me, I think, as I think all of you will agree, that she's 'paying' enough! Her gift to me is priceless, it's the gift of life. So, I'm writing to all out there who wish to donate, they can contact me via email on the email contact form to the right of this message, any amount donated is sincerely appreciated, it is also tax-deductible. I will add another blog sometime soon when I get in touch with some organizations who the money can be sent to, and I am writing this blog for those organizations who wish to help me with getting this fundraising started. Out of respect for the donor, as of now, I am leaving her anonymous, she knows who she is, we have spoke all about this. Thanks for reading! Hope everyone else is doing better than I am! I've been feeling very nausea's lately and my feet are aching day & night. God Bless.
Well...this is a VERY slow process, however, I do believe that I have found my living liver donor. She is aware of the risks, not to say that she's bound and has to do this, but she has agreed after all that I could explain about the risks to her. So, I'm writing this page because I think now is the time to start my fundraising. I've had a few offers from organization's who are willing to help me, I think $10,000 is my goal to raise. I've done the math, and her rent & bills for 3 months, not to mention the fact that she has 3 children and would need Child Care costs, Transportation, & whatever else is deemed necessary for her to live for 3 months after her donation. My insurance (it's NY Law) covers her procedure of getting the Hepatectomy, however, I do not wish for her to lose her job and have to pay money out of pocket for me, I think, as I think all of you will agree, that she's 'paying' enough! Her gift to me is priceless, it's the gift of life. So, I'm writing to all out there who wish to donate, they can contact me via email on the email contact form to the right of this message, any amount donated is sincerely appreciated, it is also tax-deductible. I will add another blog sometime soon when I get in touch with some organizations who the money can be sent to, and I am writing this blog for those organizations who wish to help me with getting this fundraising started. Out of respect for the donor, as of now, I am leaving her anonymous, she knows who she is, we have spoke all about this. Thanks for reading! Hope everyone else is doing better than I am! I've been feeling very nausea's lately and my feet are aching day & night. God Bless.
Monday, July 11, 2011
My Appt. today...
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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...
Friday, July 8, 2011
More Appt's & MELD & grt links...
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Well, I am going to see the pulmonologist & cardiologist at Mt. Sinai Recanti/Miller Transplantation Institute Monday, July 11th. I LOVE Mt. Sinai because EVERYTHING is centralized there. They have all medical specialists to deal w/the problems that come from Liver/Kidney Transplant patients. It's great, cause I'm so sick of being the 'hot potato' of other Dr.'s. I've been referred to so many Dr's so many times, I've lost count...all I know is I've been being tossed around since 2007, and I've had my initial pre-transplant appt at Mt. Sinai on May 26th of this year! Anyways, thanks to all out there who have been helping me learn more about this & it just feels good to talk to others who knows what I'm going through. My Dr. also thinks this blog is good because it helps me spread the word of how serious Liver Disease is, and that it doesn't only happen to alcoholics, or people with Hepatitis, or the Elderly. Granted, I know that I am not a 'normal' Cirrhotic. Being a 30yr old Hispanic Female with Cryptogenic (unknown) Cirrhosis is not commonly heard of.
Once I go to this appt for the Cardiologist & Pulmonologist to review my Pulmonary Arterial Hypertension (PAH), which can be shown in detail on the Heart Catheterization I had done on March 13, 2011, which I do know came back prertty bad, my MELD# will go up and I will be continutally seen every 3 months to evaluate what my MELD should be.
However, I found some good links for those with Liver Disease: http://healthtools.aarp.org/adamcontent/liver-disease This link shows you about ALL TYPES of Liver Disease
http://www.allabouthepc.com/hepc/index.jsp This link shows ALL YOU NEED TO KNOW about Hepatitis C
http://www.nlm.nih.gov/medlineplus/ency/article/002441.htm This link can be followed via Twitter and shows the diet someone with Liver Disease should follow and it also explains why you should follow that diet, which I really like! I don't like being told what to do without explanation, I don't think anyone does! lol
Well, that's all for now, hope everyone is well! I will post late Mon or Tue and write about how the Appt went. I will know my new MELD# 2 weeks after this appt, but I'm pretty certain it will go over 15, so I can get on the 'Active' Liver Transplant List. As of right now, I am on the Transplant list, just not the 'Active' transplant list, but after Monday when the Dr's evaluate my PAH, that will all change. I know the Dr's objective is to 'run out the mileage' on the liver I have now, which is fine; however, I just want to get it over with at the same time. I've already experienced most of the effects of Liver Disease, not to mention effects of the PAH, which includes blackouts. This is no way to live & I do get frustrated that nothing can be done to counteract these symptoms. This all goes with the territory of having Liver Disease, so these are things that are out of my hands and I have to trust it into Gods hands now and I will. Well, have a blessed weekend, everybody, and ttyl!
Well, I am going to see the pulmonologist & cardiologist at Mt. Sinai Recanti/Miller Transplantation Institute Monday, July 11th. I LOVE Mt. Sinai because EVERYTHING is centralized there. They have all medical specialists to deal w/the problems that come from Liver/Kidney Transplant patients. It's great, cause I'm so sick of being the 'hot potato' of other Dr.'s. I've been referred to so many Dr's so many times, I've lost count...all I know is I've been being tossed around since 2007, and I've had my initial pre-transplant appt at Mt. Sinai on May 26th of this year! Anyways, thanks to all out there who have been helping me learn more about this & it just feels good to talk to others who knows what I'm going through. My Dr. also thinks this blog is good because it helps me spread the word of how serious Liver Disease is, and that it doesn't only happen to alcoholics, or people with Hepatitis, or the Elderly. Granted, I know that I am not a 'normal' Cirrhotic. Being a 30yr old Hispanic Female with Cryptogenic (unknown) Cirrhosis is not commonly heard of.
Once I go to this appt for the Cardiologist & Pulmonologist to review my Pulmonary Arterial Hypertension (PAH), which can be shown in detail on the Heart Catheterization I had done on March 13, 2011, which I do know came back prertty bad, my MELD# will go up and I will be continutally seen every 3 months to evaluate what my MELD should be.
However, I found some good links for those with Liver Disease: http://healthtools.aarp.org/adamcontent/liver-disease This link shows you about ALL TYPES of Liver Disease
http://www.allabouthepc.com/hepc/index.jsp This link shows ALL YOU NEED TO KNOW about Hepatitis C
http://www.nlm.nih.gov/medlineplus/ency/article/002441.htm This link can be followed via Twitter and shows the diet someone with Liver Disease should follow and it also explains why you should follow that diet, which I really like! I don't like being told what to do without explanation, I don't think anyone does! lol
Well, that's all for now, hope everyone is well! I will post late Mon or Tue and write about how the Appt went. I will know my new MELD# 2 weeks after this appt, but I'm pretty certain it will go over 15, so I can get on the 'Active' Liver Transplant List. As of right now, I am on the Transplant list, just not the 'Active' transplant list, but after Monday when the Dr's evaluate my PAH, that will all change. I know the Dr's objective is to 'run out the mileage' on the liver I have now, which is fine; however, I just want to get it over with at the same time. I've already experienced most of the effects of Liver Disease, not to mention effects of the PAH, which includes blackouts. This is no way to live & I do get frustrated that nothing can be done to counteract these symptoms. This all goes with the territory of having Liver Disease, so these are things that are out of my hands and I have to trust it into Gods hands now and I will. Well, have a blessed weekend, everybody, and ttyl!
Wednesday, July 6, 2011
Those who have contacted me...
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I would sincerely like to thank all of those who had sent me links, info, and other stories about people like me. I find it astounding that their are so many of us out there going through this same nightmare! But, I think it will give us strength & hope by sharing our stories with one another, be it if you are pre or post transplant. I have met a few people who are post transplant and I would like to know what I have to 'look forward' to. I know it's only going to get harder before it gets easier, but I'm at one of the best hospitals there is in NYC, and that's Mt. Sinai Recanti/Miller Transplantation Institute. They have EVERYTHING centralized in this one building on the upper east side & since I have Pulmonary Arterial Hypertension (PAH) as well, I am going to see the Cardiologist & Pulmonologist at the same time to discuss my PAH, which qualifies as a 'special circumstance' that will increase my MELD# which is currently at 12, but that is solely based on the 3 liver enzymes they check for. Once the Cardiologist&Pulmonologist look at my case & see my Right Heart Catheterization & Echogardiogram results I took, they feel that I need to be on more medication (sure, why not? I'm already taking 10 damned pills a day, what's more going to do!?). Currently, I am taking (believe it or not) Viagra for my PAH, since I am a Cirrhotic & I can't take any of the other medications that would normally treat PAH, and the Pulmonologist said that it's good that I'm already taking that, but she said I will need more medication & when I do see them July 11th, I will also tell them that I feel like my tummy is going to burst & I'm having difficulty in taking deep breaths. I'm constantly yawning, and this is due to the PAH because there is a lack of oxygen in my body, the Dr's could tell just by looking at my Catheterization results & my fingertips, which, they referred to as "clubbed" meaning that the nails grow kinda downward and my fingertips are more rounded at the end.
What I love about Mt. Sinai is that the Dr's there are like Teflon. NOTHING SURPRISES THEM! They have seen the worse of the worse & I had a HORRIBLE experience at a state hospital called Woodhull when I wanted to get the results of my Cardiac Catheterization, 3 Cardiologists came into the room and were writing frantically, speaking frantically, making me feel like I have the worse health in the ENTIRE WORLD. Mt. Sinai doesn't react like that. The Cardiologist I spoke to, he said "We would never 'freak out' like that in front of a patient, we know by the time people get to this Institute, they have been on a Dr. seeking roller coaster. I am not minimizing your illness, you do have PAH, it would be better if you didn't, but you do, so we are going to treat it best we know how to" That was comforting, but at the same time, it was a little disstressing to know that these 'teflon' Dr's have seen it all! Nothing surprises them anymore! Well, that's all for now, folks, hope all is well & please say a prayer for those who will never know what life is like w/o Liver Disease who are no longer with us. God Bless.
I would sincerely like to thank all of those who had sent me links, info, and other stories about people like me. I find it astounding that their are so many of us out there going through this same nightmare! But, I think it will give us strength & hope by sharing our stories with one another, be it if you are pre or post transplant. I have met a few people who are post transplant and I would like to know what I have to 'look forward' to. I know it's only going to get harder before it gets easier, but I'm at one of the best hospitals there is in NYC, and that's Mt. Sinai Recanti/Miller Transplantation Institute. They have EVERYTHING centralized in this one building on the upper east side & since I have Pulmonary Arterial Hypertension (PAH) as well, I am going to see the Cardiologist & Pulmonologist at the same time to discuss my PAH, which qualifies as a 'special circumstance' that will increase my MELD# which is currently at 12, but that is solely based on the 3 liver enzymes they check for. Once the Cardiologist&Pulmonologist look at my case & see my Right Heart Catheterization & Echogardiogram results I took, they feel that I need to be on more medication (sure, why not? I'm already taking 10 damned pills a day, what's more going to do!?). Currently, I am taking (believe it or not) Viagra for my PAH, since I am a Cirrhotic & I can't take any of the other medications that would normally treat PAH, and the Pulmonologist said that it's good that I'm already taking that, but she said I will need more medication & when I do see them July 11th, I will also tell them that I feel like my tummy is going to burst & I'm having difficulty in taking deep breaths. I'm constantly yawning, and this is due to the PAH because there is a lack of oxygen in my body, the Dr's could tell just by looking at my Catheterization results & my fingertips, which, they referred to as "clubbed" meaning that the nails grow kinda downward and my fingertips are more rounded at the end.
What I love about Mt. Sinai is that the Dr's there are like Teflon. NOTHING SURPRISES THEM! They have seen the worse of the worse & I had a HORRIBLE experience at a state hospital called Woodhull when I wanted to get the results of my Cardiac Catheterization, 3 Cardiologists came into the room and were writing frantically, speaking frantically, making me feel like I have the worse health in the ENTIRE WORLD. Mt. Sinai doesn't react like that. The Cardiologist I spoke to, he said "We would never 'freak out' like that in front of a patient, we know by the time people get to this Institute, they have been on a Dr. seeking roller coaster. I am not minimizing your illness, you do have PAH, it would be better if you didn't, but you do, so we are going to treat it best we know how to" That was comforting, but at the same time, it was a little disstressing to know that these 'teflon' Dr's have seen it all! Nothing surprises them anymore! Well, that's all for now, folks, hope all is well & please say a prayer for those who will never know what life is like w/o Liver Disease who are no longer with us. God Bless.
Tuesday, July 5, 2011
All of the Dr's appt's/headaches!
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Well, I ran into a bit of a roadblock, as many patients do w/their insurance, I had to chance my Medicaid Choice plan from UHC to HIP. Now, UHC has always been great to me, but I was sorely disappointed when the financial coordinator of Mt. Sinai told me my insurance stinks! I asked him why, that I always get approved for the medical treatment I need and he replied "Of course you do! They approve everything for everyone & then they DON'T PAY!" This was a bit of a shocker and he also said, on the serious tip, that there is a current freeze on UHC formerly known as AmeriChoice, because they owe Mt. Sinai something like over $1mill or some crazy amount. Of course, this is all due to the deflation of the Economy & I know that, as nice as their staff is, they are there because they are GETTING PAID! Not that they don't earn their pay, they work hard & they also go above & beyond the 'call of duty' so to speak. Well...just wanted to get that out!
That's what this forum is all about, ladies & gent's! Just vent your anger, frustration & all of that emotional turmoil here, or if you're seeking advice on the best medical treatment, I or someone else following me will give you great links.
So, I believe I'm going to go w/the Living Liver Donor operation, this is like THE SCARIEST SHIT that I have EVER been through! For those who have had a liver transplant, PLEASE WRITE ME W/SOME ADVICE! I am so afraid of dying during the procedure, which is a Hepatectomy & I fear that I won't wake up from this 6to10 hr operation. Please advise. Thx
Well, I ran into a bit of a roadblock, as many patients do w/their insurance, I had to chance my Medicaid Choice plan from UHC to HIP. Now, UHC has always been great to me, but I was sorely disappointed when the financial coordinator of Mt. Sinai told me my insurance stinks! I asked him why, that I always get approved for the medical treatment I need and he replied "Of course you do! They approve everything for everyone & then they DON'T PAY!" This was a bit of a shocker and he also said, on the serious tip, that there is a current freeze on UHC formerly known as AmeriChoice, because they owe Mt. Sinai something like over $1mill or some crazy amount. Of course, this is all due to the deflation of the Economy & I know that, as nice as their staff is, they are there because they are GETTING PAID! Not that they don't earn their pay, they work hard & they also go above & beyond the 'call of duty' so to speak. Well...just wanted to get that out!
That's what this forum is all about, ladies & gent's! Just vent your anger, frustration & all of that emotional turmoil here, or if you're seeking advice on the best medical treatment, I or someone else following me will give you great links.
So, I believe I'm going to go w/the Living Liver Donor operation, this is like THE SCARIEST SHIT that I have EVER been through! For those who have had a liver transplant, PLEASE WRITE ME W/SOME ADVICE! I am so afraid of dying during the procedure, which is a Hepatectomy & I fear that I won't wake up from this 6to10 hr operation. Please advise. Thx
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