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...