I've got my Heart Catheterization scheduled for Wednsday, April 18th, at Mount Sinai. The same doctor who performed the last one is scheduled to do this one, so I'm going to have him not even try to go into my neck (they couldn't get into the vein in my neck last time, spent 20 minutes and a lot of Morphine & aggravation for me, trying to do it), and just do it in the groin area (the crease where the thigh & torso meet). I like this doctor, nonetheless, because he tells me the results right as he's doing the procedure, doesn't make me wait for a week to get the results, waiting on pins & needles. All I want to hear is "You're tension levels are great! You're still medically cleared." Anything other than those words will cause me massive, paralyzing depression! It will mean that I cannot go to FL, or I can, but it'll just be a waste of time, because I'll be off of the list, and will need my medication adjusted, require another heart catheterization 3 months after my medication gets adjusted, and it'll just be a nightmare! It gives me chills just thinking about it, to be honest. I'm fairly certain that won't happen, because I've quit smoking, I've got no problems breathing, been exercising, and I've never felt greater! So, all should be well. Keep me in your prayers for that one, however.
With that said, I've got quite a lot going on. I'm still going on my 311 cruise (I've spent close to a grand on this cruise, and I really need the vacation, as well), and I leave to Miami on May 9th, and I know I'm going to spend money while on the cruise, which, unfortunately, I'm going to have to keep at a minimum. I'm paying for things now so that I'll have available funds and won't be broke afterwards. I'm going horseback riding on the beach (the horse actually goes deep & swims in the ocean! Pretty cool, huh?) and, of course, my personal favorite, jet skiing! I'll be doing these activities on the island in the Bahamas, Half Moon Cay (the private island that 311 owns and will be performing live at, as well). I've also noticed that for the concert that's taking place on the cruise has seating. This I knew & I had thought that I'd be in the nosebleed section, but, to my astonishment, I'm in the 2nd row from the stage! Pretty awesome, I must admit. I know I'm going to have a blast...the only thing that I need to worry or concern myself about is...nothing really! I'm going to have the time of my life, and food & non alcoholic drinks are all complimentry on the cruise, so I won't be spending tons of money while on board. It's only 4 nights and the person I'm sharing a cabin with told me that he didn't spend more than $200 last year when he went, so I shouldn't spend more than that, either.
I arrive back in NY on May 14th. I've decided that I'm going to cancel my NY Medicaid on May 8th (the day before I fly out) because I'll only be in NY for a day before returning to FL (in Fort Lauderdale) on the 16th of May. I'm then going to re-apply for FL Medicaid that same day that I cancel my NY Medicaid, so that I can be approved by the time I get to FL. I've got a 'safety-net' while down there, thanks to a very good friend of mine (you know who you are if you're reading this!) who added me as an authorized user on their credit card...just for emergencies. NFT will reimburse me for things that I need while there, however, they do just that. Reimburse. So, if I don't have the money to pay for things that are necessities (eg. food, transportation, etc.), then I won't be able to get reimbursed. It's not like I have unlimited access to those funds (which, by the way, are surprisingly low. For all those reading this, the time has come where I really need the finances to make this happen, so please make a donation in my honor, to NFT, by clicking here. Every donation is much appreciated!), I have to show proof of what I'm using things for, and get reimbursed by check, and only based on how much funds I have available, which, like I said, are not much. I can easily see what I have available right now being depleted in 2 months, at the most. That's not very comforting to me, and I definitely don't want to have to come back to NY because I didn't have enough money to stay there. I also don't want to have to rely on one person (my friend who's paying for my lodging while there) to take care of my financially. It puts me in a bad position & I've never been the type to depend on others. Unfortunately, this is something that my friend is willing to do, and without her help, this would not be possible for me. I can only be grateful & show my gratitude in the best way I know how.
Well, that's about all for now. I'll try to post after my heart catheterization. Till next time...
I am a 31yr old Hispanic Female w/Cryptogenic Cirrhosis going through my Pre-transplant phase. This is for ALL out there who are suffering w/any kind of liver disease and wish to tell their story! You can contact me via Facebook or Twitter on the bottom toolbar. Also, be sure to click on the orange box that says "+Share" on the toolbar to share this page with your friends!
My Liver Disease Journey...
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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!
Sunday, April 15, 2012
Getting ready for the trip...
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