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Well, I didn't get the medical clearance that I need for my transplant. The right side of my heart still has a significant amount of hypertension, so I am being put on a medication called 'Letairis', and this Letairis has some serious effects on the liver.
More itching, which I'm itching like crazy already, and when I do itch, a tiny scab can cause alot of bleeding, so, this is a side effect of Letairis, as well as Jaundice, which is a symptom I've yet to experience, and stomach pains, which I already have dibilitating stomach pains, and heart palpitations, and to me, it just seems like this new medication is going to put an extreme amount of damage on my liver. I really am at the point where I don't trust any of these Dr's at Mt. Sinai, who like to play god with my life! This never ends!!
I'm making a decision, and it's entirely up to me to make this decision. I've been thinking of the 'quality of life' that will be given to me after my transplant, and I don't think I want that quality of life; constantly going to the Dr's, fighting for a chance at survival when I may die anyway, and my attitude towards this has faded overnight, it seems. I have no more fight in me. I can't take any more bad news, it's destroying me. I can't take the fact that these 'Dr's' are like my baby-sitters, and I have to ask permission for anything I do. And it will never end!! Life post-transplant isn't going to be any better than the life I'm living now. I will never be 'healthy' again, I will always be on hard-core medication, having to see these a-hole Dr's on the regular, I just don't think I can do it.
I know that people care about me, and they want for me to have a long life, but, if this is the kind of life that's going to be in store for me, than...I don't want it. If this is God's will that I die from this illness, so be it. I want to enjoy the life I have now and not have to have myself and my entire family constantly worrying about me.
I have some major decisions to make, and I will not make them lightly. But, I am considering leaving the transplant clinic, eating a healthy diet, and when the time comes that my liver is just too weak to go on, then I want to go on. I feel like nobody's even bothered to ask me if this 'quality of life' is what I want. To be forever on SSI, forever disabled, forever seeing these Dr's, and death awaits us all! Is this really worth it to 'extend my life' for who knows how long, and have my family in constant worry & putting my loved ones in jeopardy for me? I don't want to put others, especially my family, in unneccesary peril and danger to themselves just so I can extend a few yr's on my life! I would rather enjoy the time I have, now, with my family and son, and when the time comes for me to leave this earth, it comes. Who am I to interfere with what God has in store for me?
What I guess I'm saying, and I'm sure it's very hard for everyone to understand, but I would like the last yr's of my life to be stress-free, and happy. I don't want to die on an operating table, or from a massive infection/rejection of a liver. I want to enjoy what I have now, and cherish these moments.
I don't know, I'm just so sick and tired of these constant, never-ending Dr's appts, tests, being poked and prodded, having to get 'permission' from a Dr in order to do anything! It's not like they seem so adamant on 'saving my life' anyways. All they're concerned about is, 'Is her insurance going to pay us for this & that?' It makes me sick to my stomach that these Dr's have the final say on every single thing that I do! I don't know, I'm just losing all of my bravado and ignorance is definately bliss!
I just feel like this is a never ending cycle that will never stop, and I will be seeing Dr's for the rest of my life, & I'm really not ready for that, I have a deep mistrust of Dr's, and with good reason. I've been lied to by Dr's before, and I don't see that changing!
Well, I will keep everyone posted, please leave a comment if you have any advice. Thanks!
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!
Wednesday, August 31, 2011
More bad news...
Labels:
Cirrhosis,
Heart Catheterization,
Liver Disease,
Pulmonary Arterial Hypertension,
Pulmonologist
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Bless u, some very tough decisions to make Hun. Thinking of you. Try and see what good this crappy medication can do in next few months and then consider ur options. I do totally get the wanting quality of life thing as I'm same, just found my Lung function dropped 11% due to colonisation infection. No coming back from it for me. Transplant is a massive deal x x
ReplyDeleteI definately don't take this lightly. I've been fighting tooth & nail for the last 5 yrs to improve my health. But these Dr's are just SO SHADY, when I was told this yesterday that I didn't have medical clearance and that I would need to be put on more medication, which, BTW, has some MAJOR side effects, and these side effects will actually speed up the deterioration of my Cirrhosis, causing Jaundice, heart palpatations, more itching, more swelling of legs/ankles, more cramps, and the nurse practitioner told me all of this like she's telling me the weather! Her only question was "Do we have your correct insurance on file?" They don't give a shit if I live/die, so long as their getting paid, they could care less. I couldn't even speak, and more than that, I was so appalled that she would mention that after just telling me this horrible news! I hung up on her...I know they have my correct insurance info on file, they're the ones who I speak with to get an insurance approval whenever I get these tests done!
ReplyDeleteI just think that it's never going to get better. I think I was fooling myself to believe that life after transplantation will be better, but it won't. I'll still have to be on lots of medication, still have to see Dr's, still have to get all of these invasive tests, and for what? To what end? For the CHANCE that I MAY live longer? Wouldn't it be less stressful for me&my family to grieve my death, eventually move on, instead of being in constant fear if I'm going to die, indefinately?
Life after transplantation is NOT easy! Not by a long shot!
No one takes this more serious than I do. I don't want to die, but I don't want to die on an operating table, or die because of some medication that I would be taking either. I'm not saying that if I stop going to the transplant clinic that I'll just quietly pass away in my sleep, I know that won't happen! It's an agonizing way to die, from liver cirrhosis, it's painful, and it's just terrible.
I've never been the type to 'bend over' for anybody, and for the last 5 yrs, I've been 'bending over' for all of these Dr's, who really don't care about me at all!
I don't want to die being 'the girl who fought for her life & lost'. I want to be remembered for the funny, witty person that I was, making the best out of my last days on this earth.
This is a HUGE decision, and I'm going to call my social worker from the transplant clinic, and I'm pretty certain that I'm not the first person who's been feeling this way!
So what kind of life will I have after transplantation? It NEVER ends! The appts, the invasive procedures, the risks, ALL OF IT, never ends! It's MORE than a lot to go through! And I just feel like the more I learn, the worse it will be and the less bravado I have. I don't know, I will call the social worker tomorrow and talk to her about this, not that I trust her opinion, since, of course, she's going to tell me to continue to come to the clinic, after all, my insurance is paying her salary!