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I haven't written in awhile and that's because there's really not much to tell. However, there are a few things that I would like to say first off.
I would like to personally thank everyone who has donated their time, money and prayers with me this last few months, I really appreciate it.
I've had a bit of a shock this last week. I had a 'tumor' on my leg, 3 doctor's told me that it was benign, and I was referred to see a dermatologist, which I saw this past Friday. Even the dermatologist, at a glance, said that it was a tumor. It was a marble sized ball in my thigh, on the top part of my leg. It felt like one of those little rubber balls that come out of the quarter machines, with toys/candy for kids. So, he said it needed to be biopsied. I thought he was going to schedule a biopsy, but to my surprise, he did it right then and there. So I was prepped up, and he stuck this large round lancet-like device into the tumor and said "wait a minute...". I was sitting back, so I propped up to see what was going on and to my surprise, it was oozing with this white mucus! The Dr squeezed it out, swabbed it to get a sample, looked up at me in astonishment and said "It's gone!". I now have two stitches in my leg, and have yet to find out what it was. It didn't hurt, or anything like that, it was just there. It started growing like 9 months ago, and it stopped growing when it got marble sized, perhaps a bit bigger and then started to harden. Never did the spot feel infected or irritated in any way. That's pretty odd.
As far as my liver Dr. goes, there's no news to tell there, and it's pretty damned frustrating! I'm still waiting for medical clearance, and my Pulmonologist/Cardiologist had told me that I was to get another Right Heart Catheterization in December, yet no one has called me to make an appointment for the procedure. This is so stupid and such a waste of time, because they're so focused on treating something that I don't even feel. I must admit, my ability to climb stairs and walk has gotten better, as far as my breathing goes, but my spleen/liver has gotten much worse.
I'm pretty much living off Aleve, because I've been getting these pains delivered from the devil himself in my left side, and it makes me nauseas. If I take Aleve, it pretty much subsides and I have to take 2-3 a day. I can't live like this! What if I don't get medical clearance next month? I don't have time for the PAH Dr. to tinker with my medication and sit back and wait to see if it 'gets better'. I know it's gotten better because I can feel a great difference, so I will be rather shocked to find out that I still am not medically cleared for surgery.
I feel like everything has come to a grinding halt. My liver Dr. was told, by me, of the pains that I've been getting and he said "The PAH medication can enlarge the spleen". I'm like "My spleen was already huge by the time I came to him, and what's going to happen is my spleen will rupture, and then what? They'd have to put me to sleep to remove my spleen, and if that's the case, then why am I not (by what the PAH Dr. says, who I haven't seen in months) medically cleared for my liver transplant? Shall we sit back and wait for the PAH Dr. to tinker with my medication at my expense? What if my liver/spleen get so bad that I have to be hospitalized? Or fall into a coma? Will I just die if I don't get this 'medical clearance'?" Shouldn't it be my decision to go under surgery, regardless of the risks? The way I feel, is that the risks of things going bad are already there. If the risk is 5% greater of me not making it, then that should be a risk that I should be willing to take. It should be my decision to go through the surgery, not my Dr.'s.
It's just so frustrating because these Dr's don't care about my 'well-being'. They don't care if I suffer, and go through hell and back. Heck, they don't even care if I get a liver transplant or not! It's all about milking my insurance for as much money as they can get, and having someone die during surgery is something that a surgeon doesn't want to have on his record. The better success rate a surgeon has, the more highly recommended he becomes, the more he's recommended, the more money he makes. It all boils down to the same thing: money.
Well, I don't care about money, or the integrity of any Dr's. I care about getting my liver transplant and I'm going to start to put everyone on the hot-seat with me! It's so crazy that I have to corner my Dr's to do the right thing!
I'm just not seeing the light at the end of this tunnel, it's like "Yeah, my imaginary liver transplant". I can't even get on the damned list until I get medical clearance, and then what? I wait on the list for 2 years? Or possibly have friends/family members screened as potential donors? That's all I really want, because I pretty much already know that the liver I get will not come from a cadaver, but from a living donor. I'm not going to wait and possibly die on a 'waiting list' for a liver when I have so much family and people who are willing to be tested as a donor.
Wish everyone a Happy Thanksgiving, I'm going to my sisters house, unfortunately, my son will not be there with me, he's going with daddy to Maryland for the holiday. Till next time...
Wednesday, November 16, 2011
Friday, October 21, 2011
What a bummer...
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The MRCP was done, and I do not have PSC, and in a way, I'm really pissed about that, but another part of me is relieved. It's hard to explain. I'd have to say that I'm more pissed than relieved, though. I'm tired of not knowing what I have, and how my liver became so messed up.
My Dr. said "20% of their patients have unknown cirrhosis, and it's as frustrating to them as it is to me". YEAH RIGHT! I highly doubt that. I've subjected myself to countless MRI's, CAT Scans, an Endoscopy, a liver biopsy, blood work monthly, and we still don't know!? I'm willing to continue with the 'process of elimination'. I've already been through all of these test, what's a few more? We know what it's not, it's not Alcoholic, Hepatic, Billirubin, Auto-Immune, and now PSC, so let's keep going. If we keep excluding the types of cirrhosis, whatever is left must be the cause. Let's start thinking outside the box. Let's not exclude things just because it happens mostly to males, or those over 40, cause chances are, it's probably something so rare, that my Dr. isn't even considering it as the cause for my cirrhosis.
On another subject, my fundraising is going very well, and for all those who don't know, I'm fundraising with NFT (National Foundation for Transplants) and the link can be seen here. I've already raised a nice amount, but nowhere near what needs to be raised, if I'm to have a successful liver transplant.
I'm selling feather extensions (as seen on the left) for $5. I have two different kinds, as you can see. One set is 16 inches long, the other's are 5-8 inches long, and if you live in Brooklyn, NY, I can put it on you very easily, if you don't live nearby, I can ship them to you anywhere you are (please let me know location, and I will tell you how much the S&H will be). I should have them in my possession in 2 weeks. You can send me an email on which one you would like, which color you would like from the selection in the pictures, donate $5 per extension (if being shipped, contact me first, so I can determine the total of your order, go to the NFT donation website here and put in the comment 'Feather Extensions', make sure that the donation is "In Honor of Victoira Santiago", I will be notified that the donation has been made and will ship them out. I will start taking orders once they arrive, which should be soon, which I will put on my Fundraising site, which is here.
So, that wraps it up for now, for all those out there, if you haven't sent any appeal letters, or shown the fundraising site to others, please do as soon as possible. The web address is: www.transplants.org/donate/victoriasantiago
Ok, till next time....
The MRCP was done, and I do not have PSC, and in a way, I'm really pissed about that, but another part of me is relieved. It's hard to explain. I'd have to say that I'm more pissed than relieved, though. I'm tired of not knowing what I have, and how my liver became so messed up.
My Dr. said "20% of their patients have unknown cirrhosis, and it's as frustrating to them as it is to me". YEAH RIGHT! I highly doubt that. I've subjected myself to countless MRI's, CAT Scans, an Endoscopy, a liver biopsy, blood work monthly, and we still don't know!? I'm willing to continue with the 'process of elimination'. I've already been through all of these test, what's a few more? We know what it's not, it's not Alcoholic, Hepatic, Billirubin, Auto-Immune, and now PSC, so let's keep going. If we keep excluding the types of cirrhosis, whatever is left must be the cause. Let's start thinking outside the box. Let's not exclude things just because it happens mostly to males, or those over 40, cause chances are, it's probably something so rare, that my Dr. isn't even considering it as the cause for my cirrhosis.
On another subject, my fundraising is going very well, and for all those who don't know, I'm fundraising with NFT (National Foundation for Transplants) and the link can be seen here. I've already raised a nice amount, but nowhere near what needs to be raised, if I'm to have a successful liver transplant.
So, that wraps it up for now, for all those out there, if you haven't sent any appeal letters, or shown the fundraising site to others, please do as soon as possible. The web address is: www.transplants.org/donate/victoriasantiago
Ok, till next time....
Wednesday, October 12, 2011
My Cirrhosis may have a name...
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I've sent an email to my Dr. and asked him if he's had a chance to look at the liver biopsy samples that were sent over from Beth Israel about a month ago. He said he's looked at them and I may have PSC. I immediately Googled PSC, which stands for Primary Sclerosing Cholangitis.
It's a very rare disorder that damages and blocks the bile ducts inside, as well as outside the liver. The symptoms vary, and it can progress slowly, or quickly. To read more about PSC, click here. Only 7 in 100,000 American's get this disorder, and 70% of the 'lucky' 7 are male and over 40 years old. Just my luck! The odds of me, a 30 year old female, to have this, are about 0.6 in 100,000 people in the US.
Somehow, I knew when my Cirrhosis would be diagnosed, is would be some rare type, but then again, my Dr. said 'I might' have this. I asked him, "What do you mean I might? Either I have it or not. And I, for one, would like to finally know what's wrong with me and what caused my Cirrhosis." He replied "It's more important to focus on your PAH right now". I disagree. Well, I don't disagree, but the fact it, I'm already doing all I can do to help lower the PAH levels right now. I'm taking my medication, and in December, I'm going to have the 3 tests that I've had done last month done again, possibly a heart catheterization, which I'm not happy about at all, and find out if the pressure is finally within tolerable levels so I can get the medical clearance I so desperately need to get my liver transplant.
But in the meantime, there are ways to properly diagnose what I have wrong with me, such as an ERCP, or MRCP, which will let the Dr know if this is what I have, or if I don't have this PSC. The MRCP is a less invasive test, and I think in the meantime, from now until December, I can get this MRCP test done to confirm this PSC diagnosis. If need be, I've had an Endoscopy before, but an ERCP is not a 'regular' endoscopy, it's where a special dye is inserted into the duodenum, which is past the stomach, so the bile ducts can be viewed easily. An MRCP is basically a special kind of MRI where it can obtain pictures of the bile ducts, and it's non-invasive, and accurate, so more Dr.'s are using this method to diagnose PSC.
I'm going for an MRI on October 13th, since I need to get an MRI every 6 months (or 3 months? I'm not entirely sure) to check the status of my liver. I would like it if my Dr also orders an MRCP, as well as the standard MRI, which I have to take anyway. I just want to know what is causing my Cirrhosis. The last thing I need is to wake up from surgery, when I get my liver transplant, and being told 'Oh, you had such & such disorder, as it turns out'. Point being, is I don't need any 'surprises' when I awake from surgery. I'd like to know what's ailing me now! The liver biopsy should have been able to tell the Dr's that, which, it apparently didn't. So the question still remains, what kind of Cirrhosis do I have? Did my Dr just take a 'quick peek' in the microscope at my 2009 liver biopsy results and say "Oh, I think it's this". If that was the extent of tests he was going to run on my biopsy samples, then why did he hassle me to get the slides from Beth Israel over to him? And he's not even going to check to see what I have? Or if he has an idea on what I may have, he's not going to confirm it? That makes absolutely no sense!
On another topic, my family and friends have really come together and are helping me with my fundraising, which I thank you all very much! For those who don't know about my fundraising, please click here
So, that's all for now. Just to mention quickly, I had to go to the Emergency Room twice, first time for my feet & ankles that were very swollen, as was my belly, when the Dr's saw me, they said that I would definitely need a paracentesis, which is a draining of the fluid trapped in pockets in my abdomen. Turns out, there was no fluid in my abdomen! The head Dr. of the ER had another Dr. come to verify in the ultrasound that there were no pockets of fluid, meaning, basically, all of my huge abdomen was all Spleen and Liver!! It was unbelievable to see how large my spleen was, it started right underneath my breast, and shot straight out into a rock-hard bulbous balloon that ended at the beginning of my groin. That's insane! Your spleen shouldn't even be outside of your ribs, and not only is my spleen outside of my ribs, it's taking up pretty much all of my abdomen. This is, yet another problem, that the Dr's aren't doing anything to fix. The Dr. actually described my spleen as 'popable'! Is that a 'medical term'? Jeez...popable, meaning that if I get one whack to my tummy, it's all over, my spleen will rupture & I may die if I don't get immediate surgery to either stitch it back up, or remove it completely.
The only reason they are not removing it now, is because after the liver transplant, in time, it will go down and back to it's normal state. Your spleen isn't like your appendix, a non-vital organ, your spleen is what makes white blood cells (which is why my WBC's are so low, since they're all trapped in my huge spleen, which can't be drained of all the accumulated blood in it, since it's not in 'pockets' of blood, it's tissue), and if you don't have your spleen, your body isn't making WBC's, which is what fights off infection, and even me, with my WBC's so low, something as simple as the common cold can, in time, kill me. Any virus can run rampant and infect me to the point of death since my body has insufficient WBC's to fight infection.
The other time I went to the ER, was because of my teeth. I woke up, and my pajama was soaked in blood, and it was coming from my gums, when I looked in the mirror, I saw it was coming from a particular area, and that area was a deep red color, I thought it was infected. Turns out, it wasn't, and they were going to do a platelet transfusion if my platelets were low and getting lower, but, as luck would finally have it, they raised from 40 to 67. I was trying to think what made my platelets go up so much higher (which is great) than before. The only thing I can think of, is now that I'm wearing the Nicotine Patch & haven't been smoking for 3 1/2 weeks now, I've been eating green, seedless grapes like they're going out of style! I mean, like a crateful a day! I guess it's my substitute for smoking, but I just love them. Perhaps their giving me the platelets that my body needs. Who knows? It can't hurt to eat a lot of grapes, though.
Ok, I will keep in touch, as usual. Till next time...
I've sent an email to my Dr. and asked him if he's had a chance to look at the liver biopsy samples that were sent over from Beth Israel about a month ago. He said he's looked at them and I may have PSC. I immediately Googled PSC, which stands for Primary Sclerosing Cholangitis.
It's a very rare disorder that damages and blocks the bile ducts inside, as well as outside the liver. The symptoms vary, and it can progress slowly, or quickly. To read more about PSC, click here. Only 7 in 100,000 American's get this disorder, and 70% of the 'lucky' 7 are male and over 40 years old. Just my luck! The odds of me, a 30 year old female, to have this, are about 0.6 in 100,000 people in the US.
Somehow, I knew when my Cirrhosis would be diagnosed, is would be some rare type, but then again, my Dr. said 'I might' have this. I asked him, "What do you mean I might? Either I have it or not. And I, for one, would like to finally know what's wrong with me and what caused my Cirrhosis." He replied "It's more important to focus on your PAH right now". I disagree. Well, I don't disagree, but the fact it, I'm already doing all I can do to help lower the PAH levels right now. I'm taking my medication, and in December, I'm going to have the 3 tests that I've had done last month done again, possibly a heart catheterization, which I'm not happy about at all, and find out if the pressure is finally within tolerable levels so I can get the medical clearance I so desperately need to get my liver transplant.
But in the meantime, there are ways to properly diagnose what I have wrong with me, such as an ERCP, or MRCP, which will let the Dr know if this is what I have, or if I don't have this PSC. The MRCP is a less invasive test, and I think in the meantime, from now until December, I can get this MRCP test done to confirm this PSC diagnosis. If need be, I've had an Endoscopy before, but an ERCP is not a 'regular' endoscopy, it's where a special dye is inserted into the duodenum, which is past the stomach, so the bile ducts can be viewed easily. An MRCP is basically a special kind of MRI where it can obtain pictures of the bile ducts, and it's non-invasive, and accurate, so more Dr.'s are using this method to diagnose PSC.
I'm going for an MRI on October 13th, since I need to get an MRI every 6 months (or 3 months? I'm not entirely sure) to check the status of my liver. I would like it if my Dr also orders an MRCP, as well as the standard MRI, which I have to take anyway. I just want to know what is causing my Cirrhosis. The last thing I need is to wake up from surgery, when I get my liver transplant, and being told 'Oh, you had such & such disorder, as it turns out'. Point being, is I don't need any 'surprises' when I awake from surgery. I'd like to know what's ailing me now! The liver biopsy should have been able to tell the Dr's that, which, it apparently didn't. So the question still remains, what kind of Cirrhosis do I have? Did my Dr just take a 'quick peek' in the microscope at my 2009 liver biopsy results and say "Oh, I think it's this". If that was the extent of tests he was going to run on my biopsy samples, then why did he hassle me to get the slides from Beth Israel over to him? And he's not even going to check to see what I have? Or if he has an idea on what I may have, he's not going to confirm it? That makes absolutely no sense!
On another topic, my family and friends have really come together and are helping me with my fundraising, which I thank you all very much! For those who don't know about my fundraising, please click here
So, that's all for now. Just to mention quickly, I had to go to the Emergency Room twice, first time for my feet & ankles that were very swollen, as was my belly, when the Dr's saw me, they said that I would definitely need a paracentesis, which is a draining of the fluid trapped in pockets in my abdomen. Turns out, there was no fluid in my abdomen! The head Dr. of the ER had another Dr. come to verify in the ultrasound that there were no pockets of fluid, meaning, basically, all of my huge abdomen was all Spleen and Liver!! It was unbelievable to see how large my spleen was, it started right underneath my breast, and shot straight out into a rock-hard bulbous balloon that ended at the beginning of my groin. That's insane! Your spleen shouldn't even be outside of your ribs, and not only is my spleen outside of my ribs, it's taking up pretty much all of my abdomen. This is, yet another problem, that the Dr's aren't doing anything to fix. The Dr. actually described my spleen as 'popable'! Is that a 'medical term'? Jeez...popable, meaning that if I get one whack to my tummy, it's all over, my spleen will rupture & I may die if I don't get immediate surgery to either stitch it back up, or remove it completely.
The only reason they are not removing it now, is because after the liver transplant, in time, it will go down and back to it's normal state. Your spleen isn't like your appendix, a non-vital organ, your spleen is what makes white blood cells (which is why my WBC's are so low, since they're all trapped in my huge spleen, which can't be drained of all the accumulated blood in it, since it's not in 'pockets' of blood, it's tissue), and if you don't have your spleen, your body isn't making WBC's, which is what fights off infection, and even me, with my WBC's so low, something as simple as the common cold can, in time, kill me. Any virus can run rampant and infect me to the point of death since my body has insufficient WBC's to fight infection.
The other time I went to the ER, was because of my teeth. I woke up, and my pajama was soaked in blood, and it was coming from my gums, when I looked in the mirror, I saw it was coming from a particular area, and that area was a deep red color, I thought it was infected. Turns out, it wasn't, and they were going to do a platelet transfusion if my platelets were low and getting lower, but, as luck would finally have it, they raised from 40 to 67. I was trying to think what made my platelets go up so much higher (which is great) than before. The only thing I can think of, is now that I'm wearing the Nicotine Patch & haven't been smoking for 3 1/2 weeks now, I've been eating green, seedless grapes like they're going out of style! I mean, like a crateful a day! I guess it's my substitute for smoking, but I just love them. Perhaps their giving me the platelets that my body needs. Who knows? It can't hurt to eat a lot of grapes, though.
Ok, I will keep in touch, as usual. Till next time...
Monday, September 19, 2011
And the Fundraising Begins...
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I've added a new link on the right side of this page, I'm now a patient of National Foundation for Transplants (NFT) and you can make a tax-deductible donation in my honor by clicking here. When you click to donate, please be sure to put that your donation is in Honor of Victoria Santiago.
If you don't put that, it will go to the general cause of NFT. I've also been recruiting volunteers.
It's very vital to the fundraiser that I have volunteers to help me, weather it be people who can donate an hour of their time, donate items, or any services that you can offer (i.e. babysitting, haircuts, baked goods, items you wish to get rid of that can be auctioned off, etc.)
Now, in order to be a volunteer, I need to put you down as one. For this, I need your full name, address (where you get mail), phone number, and email address.
I'm going to give a short description of what volunteering entails (all don't apply, even if you can do one of these, it would be much appreciated!):
Also, all funds that are donated go to NFT, and NFT regulates what can be reimbursed, and what cannot be reimbursed. For example, I just put in for reimbursement for a blood pressure monitor that my PAH Dr. told me to get. That will be approved by NFT. If I wanted to buy new clothing, or pay my phone or cable bill, these will not be reimbursed to me from the funds that NFT has in my honor. Only medical expenses, and expenses related to my transplant will be reimbursed to me. So anyone who wishes to make a donation, be assured that this money is going towards medical expenses.
Committee meetings are essential to keep the Fundraising efforts running smoothly, and to ensure that efforts are being made towards the cause.
If there's any students who wish to become a volunteer, since NFT is a 503 (c) charity organization, it can be put towards any school requirements of volunteering.
Also, Volunteering is a great thing to add to your resume. Companies are impressed to see that you have volunteered your time for a very worthy cause.
I have much more information on volunteering, and, as most of you may already know, I'm planning a Fundraiser in Central Park which will be a 'Movie Night'. I'm very grateful for those who have agreed to help with this particular event, however, to keep the Fundraising Committee together and aware of what is going on 'as a group', is vital in order to help with any particular event(s).
If you wish for more information on volunteering, please send me a message. It doesn't matter what state/country you live in, anyone can volunteer by helping with fundraising efforts, and documents can be emailed to those who live outside of NYC. Anyone who wishes to help me in my fundraising efforts are welcome!
Thank you very very much for all of your help and time. I look forward to having you as a part of the fundraising committee! Have a blessed day!
I've added a new link on the right side of this page, I'm now a patient of National Foundation for Transplants (NFT) and you can make a tax-deductible donation in my honor by clicking here. When you click to donate, please be sure to put that your donation is in Honor of Victoria Santiago.
If you don't put that, it will go to the general cause of NFT. I've also been recruiting volunteers.
It's very vital to the fundraiser that I have volunteers to help me, weather it be people who can donate an hour of their time, donate items, or any services that you can offer (i.e. babysitting, haircuts, baked goods, items you wish to get rid of that can be auctioned off, etc.)
Now, in order to be a volunteer, I need to put you down as one. For this, I need your full name, address (where you get mail), phone number, and email address.
I'm going to give a short description of what volunteering entails (all don't apply, even if you can do one of these, it would be much appreciated!):
- Contact local (and national) people you may know (friends/family) who might help with donations, volunteering time or sponsoring events
- Participate in local events that have/are being(been) planned
- Collect donations at booths at events, put canisters by cash registers at local stores (materials will be provided to you) & collect funds to be handed in at the next Committee Meeting
- Contact local businesses for donations of products/services to use at an event (auction &/or raffle)
- Contact local civic organizations and ask for volunteers to help (methods of approaching organizations & businesses will be discussed at Committee meetings, as well as all proper forms)
- There will be 'brainstorming sessions' at Committee meetings and all ideas are welcomed/needed!
- Committee meetings will be held 2x per month, for 1 hour, on a weekend in the evening, so more can attend (I will not have Committee meetings interfere w/work schedules & make them at appropriate times when everyone will have an hour to spare
Also, all funds that are donated go to NFT, and NFT regulates what can be reimbursed, and what cannot be reimbursed. For example, I just put in for reimbursement for a blood pressure monitor that my PAH Dr. told me to get. That will be approved by NFT. If I wanted to buy new clothing, or pay my phone or cable bill, these will not be reimbursed to me from the funds that NFT has in my honor. Only medical expenses, and expenses related to my transplant will be reimbursed to me. So anyone who wishes to make a donation, be assured that this money is going towards medical expenses.
Committee meetings are essential to keep the Fundraising efforts running smoothly, and to ensure that efforts are being made towards the cause.
If there's any students who wish to become a volunteer, since NFT is a 503 (c) charity organization, it can be put towards any school requirements of volunteering.
Also, Volunteering is a great thing to add to your resume. Companies are impressed to see that you have volunteered your time for a very worthy cause.
I have much more information on volunteering, and, as most of you may already know, I'm planning a Fundraiser in Central Park which will be a 'Movie Night'. I'm very grateful for those who have agreed to help with this particular event, however, to keep the Fundraising Committee together and aware of what is going on 'as a group', is vital in order to help with any particular event(s).
If you wish for more information on volunteering, please send me a message. It doesn't matter what state/country you live in, anyone can volunteer by helping with fundraising efforts, and documents can be emailed to those who live outside of NYC. Anyone who wishes to help me in my fundraising efforts are welcome!
Thank you very very much for all of your help and time. I look forward to having you as a part of the fundraising committee! Have a blessed day!
Thursday, September 15, 2011
Skeletons in the Closet...
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I quit smoking yesterday, it was something that had to be done, and it may have been the reason that I didn't get medical clearance last month. Any disease/disorder that can result in the need for a lung transplant, smoking definitely isn't helping it get better, regardless of the medication.
Since I'm on this new Letairis to help my PAH, and it's side effects are so awful, it'd be pretty pointless to continue to smoke cigarettes and take this medication, as well.
Well, the Edema (swelling/water in my feet) was actually coming out of the pores of my foot yesterday! I didn't even know that could happen. Everyone told me to keep my feet elevated, and I, stubbornly, finally heeded to their advice last night, and to my surprise, woke up today and they're about 75% less swollen than they were! So I'm definitely going to keep my feet up! It's not the most comfortable position, but it works. When I first elevated my feet, I felt a tingling sensation coming up my legs (possibly the fluid moving up my leg?) and I guess, once it got high enough into my abdomen area, it could then be processed by my kidneys (since I'm on large doses of diuretics aka water pills) and I can urinate it out, which, this morning, after sleeping with my feet up all night, I went a lot this morning! So that's good!
So, I wanted some advice on all who are reading this, you can click the "comments" blue words at the end of this particular blog, and 'Post a Comment'. I came upon a young woman on Face Book that published her own book. I've started to read it and it's really an amazing story! Many people have told me that I should write a book, since I've conquered so many things and have came out alive on the other side. This isn't solely about my liver disease, it's more of my teen years, and how everything spiraled out of control. Of course, I do want to mention where I'm at now, and I would almost be tempted to talk about a lot of those things here, but some of it is a little disturbing. Nevertheless, it's what's happened in my life. One main thing I would touch upon that I haven't touched upon here, is when I was raped. I've never really spoken about it, and after it happened (when I was 18), I did the right thing and testified against him in trial, and he was found guilty. His sentence was up to the judge and based upon his crimes (which can be seen here [last name: Samuels, first name: Craig]) the sentence could have been 7-25 years. He was sentenced to 20 years.
I see my life in chapters, just like a book, and certain 'chapters', I see it as other life-times that I just don't want to think about. However, my way of dealing with things for a long time was not to deal with them; it was much easier to stick a needle in my arm and forget. When you stop using heroin and get this flood of emotions, turmoil, and everything that's been suppressed over the years comes and smacks you in the face, it's too much to handle. Reality hits like a smack in the face and it becomes overwhelming. There's only so much that one person can take, and everyone has their 'breaking point' which I define as the point of no return. Just losing your mind and never coming out of it. I've heard of things that have happened to women, who are now permanent residents of a psychiatric ward. Their body functions, but when you look into their eyes, there's a vacant stare and nothing can be seen in them.
When your life is threatened by another person, it's an indescribable feeling. A lot of women who've been raped block out what's happened to them, but I remember everything. I don't know if that's due to me testifying at his trial, or having to repeat my story to the police, detectives and the District Attorney, or just because my memory is good. I even remember when it finished, and I was in his car, I yanked out my hair and tucked it between the seat, left a big hand print on the window, all in the hopes that if I was going to die, right now in this car, the police will find my DNA in this vehicle. My death will not go unavenged.
I also remember when he told me to get out of the car, that I was going to take down his license plate. I had no pen, & I frantically went through my purse, got out a lipstick and wrote his plate # down & kept repeating it in my head, like a mantra, AD8-66A, AD8-66A, over and over until I got to the pay phone and called 911. I also recall breaking down in the back seat of the police car. I was a complete mess, clothing ripped, hair all over the place. I heard the cops asking me "What was the model/make of the vehicle?" and I said it was a silver/grey older long car. I then hear 2 officers conversing and saying "What does the plate come back as?" (other cop) "It's coming up as a silver 1987 Grey Lincoln, registered to a Craig Samuels".
Craig Samuels. This was the first time I ever heard that name. The unspeakable evil now had a name. A name I would never forget, and a name that I wish I'd never heard.
At that moment, I knew that the police had him. I knew that he was stupid enough (or just assumed that I was stupid and wouldn't call the police on him, I don't know) to use his own vehicle & license plates. I went to the nearest hospital, was checked and had a 'rape kit' done (they scrape the bottom of your nails, have a piece of paper to collect whatever comes out), and I saw my mother. She was in tears, just seeing me in the state I was in, and she hugged me and we cried, together, in an over-crowded hospital Emergency Room.
In the following weeks, I was brought to a police station, and there was this female detective who had me view a line-up. Surprisingly, there was another woman in the car, who was viewing the line-up as well. We talked a little bit, and I asked her if she knew that this was the person who assaulted her. She didn't know it for a fact (didn't take down his license plate), but they brought her along to view the line up since the perpetrators MO (Modus Apperendi) was the same. It was a dark night (like something out of a bad Hollywood movie) and the conversation was minimal, however, she was confident that this would be the same man that assaulted her. We waited in the police station in a closed room. An officer opened the door. She went in first. When she came out, she was in tears, shaking her head and said he wasn't there. I really felt for her, however, at the same time, I was pretty confident that wasn't going to be my case, since I had more concrete evidence of this mans identity. I barely had to look for a second when I said "Number 2". I asked the officers if I was right, and they said I was. Then the detective spoke to me and told me "This man's been violently raping women since 1979, but the women he targets (street-walkers, drug addicts, etc) never show up to testify, or show up to testify while they're high, and he's found not-guilty. She told me he was laughing in the other room, thinking this is all a game, that I would not show up to testify, or I would change my mind to testify.
That wasn't the case.
If anything, that gave me even more fuel to nail this SOB to the wall to be certain that his 'reign of terror' ends here and now!
By the time the trial came around, they had found four other victims, and he was being charged for 3 different rape cases, and, after that, he was to be tried for 2 other rape cases. By this time, (almost a year after the crime occurred) I was pregnant with my son, had a job and I dressed accordingly for court and told my story when the time came for me to testify.
I must have made an impressive witness, because my story never changed from when I called 911, till then. However, his story changed several times. First, he had no idea who I was. His DNA was extracted from me, and when faced with this, he said "She was a prostitute that I saw and paid her", then his story finally stood at "She was a prostitute and I didn't pay her"(like he thought that would matter, it only damaged his credibility, not mine).
Surprisingly, he was found guilty on my case only, and not guilty on the other two cases (which is strange, and I think the only logical explanation for that is (a) the two girls did not show up to testify, (b) were very high while testifying, or (c) lied about what they were doing on the streets in the first place, and changed their story, which doesn't help their credibility. I was honest from the start. Even though I was up to no good when this happened, that doesn't give anyone the right to do what he did.
I even showed up at sentencing, where I learned even more horrible things about this man, Craig Samuels. Things that, by law, couldn't be used to try him on the case (prior bad acts), but can be used as an aggravating factor for sentencing purposes. The DA said "This is a predator, a menace to society and his own family. He was charged with Attempted Murder when he beat his wife with a 2 by 4 piece of plywood with nails protruding from it, puncturing her lung, among other things, and sending her to the hospital for 3 months."
The Judge said that he cannot sentence him based on prior bad acts, and can only sentence him based on what he did to me. He said "Sentence for these crimes is 7 to 25 years. I hereby sentence you to 20 years", smacked his gavel and the prisoner (monster) was taken away.
He was supposed to have yet another trial, after being found guilty on my case, so he took a plea bargain with the district attorney and plead guilty to all 3 counts (well, 2 actually, not including mine) and was sentenced to 20 years, all to run concurrently (at the same time) and chose not to have another trial. Had he rolled the dice at another trial, he would still have to do the 20 years for my case, and any other charges found guilty on, the time would be done consecutively (one after the other), not concurrent.
Strangely, I've been keeping tabs on him, and his prison record. I don't know why, I should just leave it alone, but curiosity, I guess, gets the better of me. I've seen that he's been transferred to many different facilities, and I recall calling one of these facilities asking about him. When the Correction Officer asked "Are you a family member?", I told him the truth, that I was the victim (I hate that word), and his lips sealed, but, he did tell me he was transferred because of all the 'write-ups' (bad things) that he had, and that he's had 2 1/2 years of good time taken away from him. So, even though I plan to record a video for his parole hearing, I'm pretty sure that he will be denied parole when it comes up in 5/08/17. It's a private hearing (unlike TV shows us, you cannot be physically at the parole hearing, however, the DA can either read a letter, or show a video tape of your feelings about him being paroled), so I will write the DA a letter to be read at his hearing, but it's just scary to know that this man will be free one day, and as much as I'd like to put it behind me, I can't.
I'm afraid that he will want to retaliate against me. Technology is a great thing, but in the wrong hands, it's something that can track me down, as if I have a GPS inside of me! I can't worry about that now, I have much more pressing issues right now with my health.
Alright, so I'm asking everyone or anyone who has published a book before, if it would be a good idea to write a book, or if you think it would be therapeutic, or if it will just remind me of things that I'm trying to forget.
Life is always a battlefield. Everyone has his/her own definition of what a 'crisis' or 'problem' is, and, I'm going to say it...but since I've been diagnosed with a life-threatening disease, I think that, as a whole, I've been though so much more, and it makes me completely insensitive to other's petty problems.
I guess I just always assume that my 'friends/family' would automatically be there for me, and be willing to help in any way, shape or form, but a family member of mine is really giving me a hard time. Claiming they're been 'reluctant to help me' cause of...... Reluctant to help me?? Is that serious?? Your my family, I shouldn't have to even be asking them for help, in times of crisis, all the BS gets set aside, and we stick together, like a family should!! I mean, what part of "I'M DYING" do they not understand? So yes, I may get a little bitter or angry when I have to ask my own flesh & blood to help me, their dying sister/cousin/aunt/niece, whatever! I feel that I have a right to be a little pissed off that I have to ask my family for help when they know darn well that I need the help!
I've met some awesome and amazing people from all over the world through this site and Face Book, as well, and they're total strangers to me, and they're helping me more than my own family is! I'm very grateful for that, but I'm also a little depressed and disappointed that total strangers (who have now become good friends) are more willing to donate their time/effort for me, than my own family is! I shouldn't even have to ask! I should be asked if their is anything they can do to help me through this awful time.
Some people are so self-centered & self-absorbed with themselves, that they don't care about anyone else but themselves! I just can't see how people can stroll through life thinking that the world revolves around themselves, and have no heart towards anybody else's problems, including their own family & children.
Well, that's enough of that, and like the saying goes "When s**t hits the fan, you find out who you can really trust & rely on", or something like that! So, please leave comments, click on "Comments" right below these words, and another window will open and it will have space for you to "Post a Comment". Thanks for listening...Till next time...
I quit smoking yesterday, it was something that had to be done, and it may have been the reason that I didn't get medical clearance last month. Any disease/disorder that can result in the need for a lung transplant, smoking definitely isn't helping it get better, regardless of the medication.
Since I'm on this new Letairis to help my PAH, and it's side effects are so awful, it'd be pretty pointless to continue to smoke cigarettes and take this medication, as well.
Well, the Edema (swelling/water in my feet) was actually coming out of the pores of my foot yesterday! I didn't even know that could happen. Everyone told me to keep my feet elevated, and I, stubbornly, finally heeded to their advice last night, and to my surprise, woke up today and they're about 75% less swollen than they were! So I'm definitely going to keep my feet up! It's not the most comfortable position, but it works. When I first elevated my feet, I felt a tingling sensation coming up my legs (possibly the fluid moving up my leg?) and I guess, once it got high enough into my abdomen area, it could then be processed by my kidneys (since I'm on large doses of diuretics aka water pills) and I can urinate it out, which, this morning, after sleeping with my feet up all night, I went a lot this morning! So that's good!
So, I wanted some advice on all who are reading this, you can click the "comments" blue words at the end of this particular blog, and 'Post a Comment'. I came upon a young woman on Face Book that published her own book. I've started to read it and it's really an amazing story! Many people have told me that I should write a book, since I've conquered so many things and have came out alive on the other side. This isn't solely about my liver disease, it's more of my teen years, and how everything spiraled out of control. Of course, I do want to mention where I'm at now, and I would almost be tempted to talk about a lot of those things here, but some of it is a little disturbing. Nevertheless, it's what's happened in my life. One main thing I would touch upon that I haven't touched upon here, is when I was raped. I've never really spoken about it, and after it happened (when I was 18), I did the right thing and testified against him in trial, and he was found guilty. His sentence was up to the judge and based upon his crimes (which can be seen here [last name: Samuels, first name: Craig]) the sentence could have been 7-25 years. He was sentenced to 20 years.
I see my life in chapters, just like a book, and certain 'chapters', I see it as other life-times that I just don't want to think about. However, my way of dealing with things for a long time was not to deal with them; it was much easier to stick a needle in my arm and forget. When you stop using heroin and get this flood of emotions, turmoil, and everything that's been suppressed over the years comes and smacks you in the face, it's too much to handle. Reality hits like a smack in the face and it becomes overwhelming. There's only so much that one person can take, and everyone has their 'breaking point' which I define as the point of no return. Just losing your mind and never coming out of it. I've heard of things that have happened to women, who are now permanent residents of a psychiatric ward. Their body functions, but when you look into their eyes, there's a vacant stare and nothing can be seen in them.
When your life is threatened by another person, it's an indescribable feeling. A lot of women who've been raped block out what's happened to them, but I remember everything. I don't know if that's due to me testifying at his trial, or having to repeat my story to the police, detectives and the District Attorney, or just because my memory is good. I even remember when it finished, and I was in his car, I yanked out my hair and tucked it between the seat, left a big hand print on the window, all in the hopes that if I was going to die, right now in this car, the police will find my DNA in this vehicle. My death will not go unavenged.
I also remember when he told me to get out of the car, that I was going to take down his license plate. I had no pen, & I frantically went through my purse, got out a lipstick and wrote his plate # down & kept repeating it in my head, like a mantra, AD8-66A, AD8-66A, over and over until I got to the pay phone and called 911. I also recall breaking down in the back seat of the police car. I was a complete mess, clothing ripped, hair all over the place. I heard the cops asking me "What was the model/make of the vehicle?" and I said it was a silver/grey older long car. I then hear 2 officers conversing and saying "What does the plate come back as?" (other cop) "It's coming up as a silver 1987 Grey Lincoln, registered to a Craig Samuels".
Craig Samuels. This was the first time I ever heard that name. The unspeakable evil now had a name. A name I would never forget, and a name that I wish I'd never heard.
At that moment, I knew that the police had him. I knew that he was stupid enough (or just assumed that I was stupid and wouldn't call the police on him, I don't know) to use his own vehicle & license plates. I went to the nearest hospital, was checked and had a 'rape kit' done (they scrape the bottom of your nails, have a piece of paper to collect whatever comes out), and I saw my mother. She was in tears, just seeing me in the state I was in, and she hugged me and we cried, together, in an over-crowded hospital Emergency Room.
In the following weeks, I was brought to a police station, and there was this female detective who had me view a line-up. Surprisingly, there was another woman in the car, who was viewing the line-up as well. We talked a little bit, and I asked her if she knew that this was the person who assaulted her. She didn't know it for a fact (didn't take down his license plate), but they brought her along to view the line up since the perpetrators MO (Modus Apperendi) was the same. It was a dark night (like something out of a bad Hollywood movie) and the conversation was minimal, however, she was confident that this would be the same man that assaulted her. We waited in the police station in a closed room. An officer opened the door. She went in first. When she came out, she was in tears, shaking her head and said he wasn't there. I really felt for her, however, at the same time, I was pretty confident that wasn't going to be my case, since I had more concrete evidence of this mans identity. I barely had to look for a second when I said "Number 2". I asked the officers if I was right, and they said I was. Then the detective spoke to me and told me "This man's been violently raping women since 1979, but the women he targets (street-walkers, drug addicts, etc) never show up to testify, or show up to testify while they're high, and he's found not-guilty. She told me he was laughing in the other room, thinking this is all a game, that I would not show up to testify, or I would change my mind to testify.
That wasn't the case.
If anything, that gave me even more fuel to nail this SOB to the wall to be certain that his 'reign of terror' ends here and now!
By the time the trial came around, they had found four other victims, and he was being charged for 3 different rape cases, and, after that, he was to be tried for 2 other rape cases. By this time, (almost a year after the crime occurred) I was pregnant with my son, had a job and I dressed accordingly for court and told my story when the time came for me to testify.
I must have made an impressive witness, because my story never changed from when I called 911, till then. However, his story changed several times. First, he had no idea who I was. His DNA was extracted from me, and when faced with this, he said "She was a prostitute that I saw and paid her", then his story finally stood at "She was a prostitute and I didn't pay her"(like he thought that would matter, it only damaged his credibility, not mine).
Surprisingly, he was found guilty on my case only, and not guilty on the other two cases (which is strange, and I think the only logical explanation for that is (a) the two girls did not show up to testify, (b) were very high while testifying, or (c) lied about what they were doing on the streets in the first place, and changed their story, which doesn't help their credibility. I was honest from the start. Even though I was up to no good when this happened, that doesn't give anyone the right to do what he did.
I even showed up at sentencing, where I learned even more horrible things about this man, Craig Samuels. Things that, by law, couldn't be used to try him on the case (prior bad acts), but can be used as an aggravating factor for sentencing purposes. The DA said "This is a predator, a menace to society and his own family. He was charged with Attempted Murder when he beat his wife with a 2 by 4 piece of plywood with nails protruding from it, puncturing her lung, among other things, and sending her to the hospital for 3 months."
The Judge said that he cannot sentence him based on prior bad acts, and can only sentence him based on what he did to me. He said "Sentence for these crimes is 7 to 25 years. I hereby sentence you to 20 years", smacked his gavel and the prisoner (monster) was taken away.
He was supposed to have yet another trial, after being found guilty on my case, so he took a plea bargain with the district attorney and plead guilty to all 3 counts (well, 2 actually, not including mine) and was sentenced to 20 years, all to run concurrently (at the same time) and chose not to have another trial. Had he rolled the dice at another trial, he would still have to do the 20 years for my case, and any other charges found guilty on, the time would be done consecutively (one after the other), not concurrent.
Strangely, I've been keeping tabs on him, and his prison record. I don't know why, I should just leave it alone, but curiosity, I guess, gets the better of me. I've seen that he's been transferred to many different facilities, and I recall calling one of these facilities asking about him. When the Correction Officer asked "Are you a family member?", I told him the truth, that I was the victim (I hate that word), and his lips sealed, but, he did tell me he was transferred because of all the 'write-ups' (bad things) that he had, and that he's had 2 1/2 years of good time taken away from him. So, even though I plan to record a video for his parole hearing, I'm pretty sure that he will be denied parole when it comes up in 5/08/17. It's a private hearing (unlike TV shows us, you cannot be physically at the parole hearing, however, the DA can either read a letter, or show a video tape of your feelings about him being paroled), so I will write the DA a letter to be read at his hearing, but it's just scary to know that this man will be free one day, and as much as I'd like to put it behind me, I can't.
I'm afraid that he will want to retaliate against me. Technology is a great thing, but in the wrong hands, it's something that can track me down, as if I have a GPS inside of me! I can't worry about that now, I have much more pressing issues right now with my health.
Alright, so I'm asking everyone or anyone who has published a book before, if it would be a good idea to write a book, or if you think it would be therapeutic, or if it will just remind me of things that I'm trying to forget.
Life is always a battlefield. Everyone has his/her own definition of what a 'crisis' or 'problem' is, and, I'm going to say it...but since I've been diagnosed with a life-threatening disease, I think that, as a whole, I've been though so much more, and it makes me completely insensitive to other's petty problems.
I guess I just always assume that my 'friends/family' would automatically be there for me, and be willing to help in any way, shape or form, but a family member of mine is really giving me a hard time. Claiming they're been 'reluctant to help me' cause of...... Reluctant to help me?? Is that serious?? Your my family, I shouldn't have to even be asking them for help, in times of crisis, all the BS gets set aside, and we stick together, like a family should!! I mean, what part of "I'M DYING" do they not understand? So yes, I may get a little bitter or angry when I have to ask my own flesh & blood to help me, their dying sister/cousin/aunt/niece, whatever! I feel that I have a right to be a little pissed off that I have to ask my family for help when they know darn well that I need the help!
I've met some awesome and amazing people from all over the world through this site and Face Book, as well, and they're total strangers to me, and they're helping me more than my own family is! I'm very grateful for that, but I'm also a little depressed and disappointed that total strangers (who have now become good friends) are more willing to donate their time/effort for me, than my own family is! I shouldn't even have to ask! I should be asked if their is anything they can do to help me through this awful time.
Some people are so self-centered & self-absorbed with themselves, that they don't care about anyone else but themselves! I just can't see how people can stroll through life thinking that the world revolves around themselves, and have no heart towards anybody else's problems, including their own family & children.
Well, that's enough of that, and like the saying goes "When s**t hits the fan, you find out who you can really trust & rely on", or something like that! So, please leave comments, click on "Comments" right below these words, and another window will open and it will have space for you to "Post a Comment". Thanks for listening...Till next time...
Sunday, September 11, 2011
The Return of the Ascites...
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Well, this was to be expected, I guess. This medication, Letairis, is showing it's awful side effects and pretty quickly, too. My feet, ankles, toes, legs and belly are balloons, once more, except my diuretics have already been raised, so taking more of those won't help. Also, my tummy is exceptionally large, once again, so the water pills alone are not enough. This is also a side effect of the Letairis, which I can't just stop taking, since it's crutial for my medical clearance and helping my PAH.
So, I'm pretty much at a loss of what to do, but I'm also pretty sure what needs to happen. A paracentisis, which is also knows as a 'tap' where a needle is inserted into the abdomen and the fluid is drained out. I probably also need IV Lasix (one of the diuretics I take in pill form) to drain the fluid from my legs & feet areas.
Unfortunately, this is all inpatient stuff, so I'm going to pack a little bag with clothes/necessities and go to Mount Sinai's ER. I'd rather be admitted there, since they have all of my medical history there already, and it's a much better hospital than Woodhull, which is my local hospital. So, it looks like I'll be 'out of commission' for about 2-3 days, hopefully no more than that. Also, my Dr. will be able to visit me while I'm there, just to check in and see how I'm doing.
Well, that's about all for now. The weird thing is: I'm not afraid. My friends/family are freaking out WAY more than I am. I've spoken to a lot of post-liver transplant patients through TransplantBuddies and they've been hospitalized more times than they can remember! Having the taps done (one person had 7 liters of fluid drained from them, and another had 120LBS of fluid drained, isn't that insane?!) are part of the territory when it comes to liver disease, everyone who's a pre/post-liver transplant patient knows that! It's just something that happens, and it gets dealt with like anything else. So, I feel like to be nervous & complain about going to Mount Sinai is acting like a baby compared to others who've went through this before me!
You know, it's amazing to hear other's tragic stories on what they've went through, and came out alive and living their lives, and loving it! That's really been my inspiration lately, especially when I was feeling so tired of everything and all of this horrible (which is an understatement) news that I've had to deal with this last month, but hearing others who have already went through all of this, and are living life now, has really given me the strength and courage to push through! I'm even considering writing a book. Not just on all of my health problems, but of my entire life, things that I don't really talk about here, but have only touched on (such as being raped, living on the streets, selling myself to support an addiction, having overcome all of that and now, facing the ultimate test of faith, by having all of these health issues).
I've already got a very full plate, since I'm spearheading my Campaign for Fundraising (for more info, click here), and getting together as many volunteers as possible. It is recommended by NFT that I should designate a 'Chair Person' other than myself who can do all of this for me, but I really don't have anyone who will fight for this cause as much as I will. Everyone I know has jobs, so they're time's already limited, but, to my surprise, I'm actually really good at fundraising, and have came up with some great ideas and events. However, I will designate someone to be my Co-Chair person, so that when times like this, that I'm 'out of commission', my Co-Chair person can take over and make sure things in the Campaign are running smoothly.
Also, for those who wish to Volunteer, or would like more information on Volunteering for my NFT Campaign, please send me an email and I will send you all of the information you need. It's crutial that I get more Volunteers, regardless of what state/country you live in, you can Volunteer towards the Campaign, and, sadly, as of right now, including myself, I only have a lousy 9 Volunteers! So please send me an email on how you can help!
Thanks for listening, and wish me luck at Mount Sinai! Till next time...
Well, this was to be expected, I guess. This medication, Letairis, is showing it's awful side effects and pretty quickly, too. My feet, ankles, toes, legs and belly are balloons, once more, except my diuretics have already been raised, so taking more of those won't help. Also, my tummy is exceptionally large, once again, so the water pills alone are not enough. This is also a side effect of the Letairis, which I can't just stop taking, since it's crutial for my medical clearance and helping my PAH.
So, I'm pretty much at a loss of what to do, but I'm also pretty sure what needs to happen. A paracentisis, which is also knows as a 'tap' where a needle is inserted into the abdomen and the fluid is drained out. I probably also need IV Lasix (one of the diuretics I take in pill form) to drain the fluid from my legs & feet areas.
Unfortunately, this is all inpatient stuff, so I'm going to pack a little bag with clothes/necessities and go to Mount Sinai's ER. I'd rather be admitted there, since they have all of my medical history there already, and it's a much better hospital than Woodhull, which is my local hospital. So, it looks like I'll be 'out of commission' for about 2-3 days, hopefully no more than that. Also, my Dr. will be able to visit me while I'm there, just to check in and see how I'm doing.
Well, that's about all for now. The weird thing is: I'm not afraid. My friends/family are freaking out WAY more than I am. I've spoken to a lot of post-liver transplant patients through TransplantBuddies and they've been hospitalized more times than they can remember! Having the taps done (one person had 7 liters of fluid drained from them, and another had 120LBS of fluid drained, isn't that insane?!) are part of the territory when it comes to liver disease, everyone who's a pre/post-liver transplant patient knows that! It's just something that happens, and it gets dealt with like anything else. So, I feel like to be nervous & complain about going to Mount Sinai is acting like a baby compared to others who've went through this before me!
You know, it's amazing to hear other's tragic stories on what they've went through, and came out alive and living their lives, and loving it! That's really been my inspiration lately, especially when I was feeling so tired of everything and all of this horrible (which is an understatement) news that I've had to deal with this last month, but hearing others who have already went through all of this, and are living life now, has really given me the strength and courage to push through! I'm even considering writing a book. Not just on all of my health problems, but of my entire life, things that I don't really talk about here, but have only touched on (such as being raped, living on the streets, selling myself to support an addiction, having overcome all of that and now, facing the ultimate test of faith, by having all of these health issues).
I've already got a very full plate, since I'm spearheading my Campaign for Fundraising (for more info, click here), and getting together as many volunteers as possible. It is recommended by NFT that I should designate a 'Chair Person' other than myself who can do all of this for me, but I really don't have anyone who will fight for this cause as much as I will. Everyone I know has jobs, so they're time's already limited, but, to my surprise, I'm actually really good at fundraising, and have came up with some great ideas and events. However, I will designate someone to be my Co-Chair person, so that when times like this, that I'm 'out of commission', my Co-Chair person can take over and make sure things in the Campaign are running smoothly.
Also, for those who wish to Volunteer, or would like more information on Volunteering for my NFT Campaign, please send me an email and I will send you all of the information you need. It's crutial that I get more Volunteers, regardless of what state/country you live in, you can Volunteer towards the Campaign, and, sadly, as of right now, including myself, I only have a lousy 9 Volunteers! So please send me an email on how you can help!
Thanks for listening, and wish me luck at Mount Sinai! Till next time...
Tuesday, September 6, 2011
The Next Painful Months Ahead...
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So, I'd be lying if I said I wasn't scared out of my mind right now. This new medication that I'm on, Letairis (click here for more info), has a lot of very bad side effects, especially towards the liver (click here to see side effects of Letairis).
This medication was more of a 'last resort' for me, which is why I was put on the Revatio in late March 2011, which is after I got the results from my Heart Catheterization. At the time, the Cardiology Dept. at Belleview Hospital thought it would be the best medication for me to take that does the least damage to the liver to treat my PAH.
Even though Letairis is damaging to the liver, it's the only medicaiton that is the 'least damaging' to the liver, however, it still puts a very bad strain on the liver, even for someone who doesn't have liver disease. There are different types of PAH. Their's Primary Pulmonary Arterial Hypertension (PPAH) and Secondary(aka Associated) Pulmonary Arterial Hypertention (SPAH/APAH), obviously, I have SPAH/APAH, and in each of these two types, their's what's called the WHO scale, which determines how severe the PAH is. It ranges from Class 1, being the least damaging, and Class 4, being the most damaged which includes; unable to perform any physical activity, feeling tired even while at rest/sleeping, shortness of breath even while sleeping and symptoms increase with almost any physical activity. (Click here to read more about the WHO Class Scale)
I have tried to educate myself as much as possible about PAH. However, it's just more bad news that I really don't need to hear, but in a way, it's best to know what's wrong with our bodies. In severe cased of PAH, a lung transplant may be necessary. However, and thankfully, I am not in a Class 4, I'm somewhere between Class 2&3. This is where Letairis comes in. It will help relax my Pulmonary Arteries so that the blood may flow more freely.
I try to push all of this stuff into the back of my mind, or not so close to the forefront because if I thought about it 24/7, I'd destroy myself! I'm just thinking of today, and the now, cause the now is all I have. Nobody's guaranteed tomorrow, and when faced with all of these super-critical health issues, it makes that even more real.
I enjoyed two birthday parties this weekend, and it was nice, but it's also a reminder on how many more birthdays, family events, and holidays I may have left to spend with my friends & family.
These next three months are going to be very hard because I will start to get all of the side effects that I was hoping to be spared of. The constant pain, which I'm in pain every now and then and it completely dibilitates me when it comes. The stomach cramps are unbeareable, and all I can do when they come is lay in fetal position until it passes. I try to not make a huge show on when these occur, and to be honest, I don't really want to talk about it here, because I don't want to sound like I'm complaining, or expecting sympathy or pity from anyone.
What really bothers me also is that people assume things that they have no idea about. I'm disabled, and just because I wear nice clothing, makeup and don't complain about all of my 'private horrors' doesn't mean that they're not real. I wish they weren't real, and I wish I could say that I was feeling fine, but I'm not.
This medication 'Letairis' will destroy any strength/energy I have. In fact, I'm struggling to keep my eyes open right now to finish writing this blog! Most of the side effects of all of the medications that I'm taking is dizziness and feeling sleepy all the time!
So, I'm going to wrap it up here and get some rest. I'm just concerned about these next three months, and I'm really scared on how these effects will change me. The jaundice which is what I've really not been looking forward to, because my family & friends will see me in a very bad way and I don't want anyone to worry about me more than they already are.
Ok, I will keep in touch...till next time! ;-)
So, I'd be lying if I said I wasn't scared out of my mind right now. This new medication that I'm on, Letairis (click here for more info), has a lot of very bad side effects, especially towards the liver (click here to see side effects of Letairis).
This medication was more of a 'last resort' for me, which is why I was put on the Revatio in late March 2011, which is after I got the results from my Heart Catheterization. At the time, the Cardiology Dept. at Belleview Hospital thought it would be the best medication for me to take that does the least damage to the liver to treat my PAH.
Even though Letairis is damaging to the liver, it's the only medicaiton that is the 'least damaging' to the liver, however, it still puts a very bad strain on the liver, even for someone who doesn't have liver disease. There are different types of PAH. Their's Primary Pulmonary Arterial Hypertension (PPAH) and Secondary(aka Associated) Pulmonary Arterial Hypertention (SPAH/APAH), obviously, I have SPAH/APAH, and in each of these two types, their's what's called the WHO scale, which determines how severe the PAH is. It ranges from Class 1, being the least damaging, and Class 4, being the most damaged which includes; unable to perform any physical activity, feeling tired even while at rest/sleeping, shortness of breath even while sleeping and symptoms increase with almost any physical activity. (Click here to read more about the WHO Class Scale)
I have tried to educate myself as much as possible about PAH. However, it's just more bad news that I really don't need to hear, but in a way, it's best to know what's wrong with our bodies. In severe cased of PAH, a lung transplant may be necessary. However, and thankfully, I am not in a Class 4, I'm somewhere between Class 2&3. This is where Letairis comes in. It will help relax my Pulmonary Arteries so that the blood may flow more freely.
I try to push all of this stuff into the back of my mind, or not so close to the forefront because if I thought about it 24/7, I'd destroy myself! I'm just thinking of today, and the now, cause the now is all I have. Nobody's guaranteed tomorrow, and when faced with all of these super-critical health issues, it makes that even more real.
I enjoyed two birthday parties this weekend, and it was nice, but it's also a reminder on how many more birthdays, family events, and holidays I may have left to spend with my friends & family.
These next three months are going to be very hard because I will start to get all of the side effects that I was hoping to be spared of. The constant pain, which I'm in pain every now and then and it completely dibilitates me when it comes. The stomach cramps are unbeareable, and all I can do when they come is lay in fetal position until it passes. I try to not make a huge show on when these occur, and to be honest, I don't really want to talk about it here, because I don't want to sound like I'm complaining, or expecting sympathy or pity from anyone.
What really bothers me also is that people assume things that they have no idea about. I'm disabled, and just because I wear nice clothing, makeup and don't complain about all of my 'private horrors' doesn't mean that they're not real. I wish they weren't real, and I wish I could say that I was feeling fine, but I'm not.
This medication 'Letairis' will destroy any strength/energy I have. In fact, I'm struggling to keep my eyes open right now to finish writing this blog! Most of the side effects of all of the medications that I'm taking is dizziness and feeling sleepy all the time!
So, I'm going to wrap it up here and get some rest. I'm just concerned about these next three months, and I'm really scared on how these effects will change me. The jaundice which is what I've really not been looking forward to, because my family & friends will see me in a very bad way and I don't want anyone to worry about me more than they already are.
Ok, I will keep in touch...till next time! ;-)
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