I've now got three appointments to see the surgical coordinator, anesthesiologist and the psychiatric evaluation on February 17th. All three appointments are very close together, maybe a little too close together, because my first appointment is at 9:30AM at the E98th Street building, and that one is for the surgical coordinator, then at 10:00AM, I've got to walk about 2-3 blocks to the main hospital where I've got an appointment with the anesthesiologist, after that, I go about one block up to my final appointment (and probably, the most boring/challenging) to see the Psychiatrist to be evaluated, as well.
I've got no fears as to seeing the psychiatrist to be evaluated, I just don't know exactly what they're going to say to me. I always like to be prepared for those types of questions, and have answers ready to tell them. But, I guess I'll just have to play it by ear at this point. That's fine, I'm just going to answer the questions, without giving more information than is necessary (which, sometimes when I'm caught off-guard, I start to talk about things that are not relevant to the questions that I've been asked, giving away too much unnecessary information! I've come way too far to make idiotic mistakes like that now!).
As for other news, I've got two potential living donors who wish to be screened, which is really good news! I do feel a little torn, however, since both are, obviously, very close to me, and I don't want to put anyone in harms way for me. But, as I've said in the past, knowledge is power! I've been dedicating my time to know as much as possible about the living liver donation program at Mount Sinai. That's important, and I've told both (as well as any potential future) living donor candidates to do the same.
It's hard for me to relate to that, since this is a completely voluntary decision made of their part, and, I know it's not fair for me to compare myself to any potential living donors, but I feel like this is a little unfair. This is completely voluntary for them, but it's not voluntary for me. No one ever asked me 'Hey, Vicky, wanna get a liver transplant?' No. In fact, I was told 'Either you undergo a surgery that has many risks, or the odds of living to 50 years old are less than 20%'. I've even had the original Gastrointerologist back in 2007, when I first discovered that I had liver disease, tell me 'You know you're going to die from this, right?' That was really hard to hear those words, and perhaps, when told so bluntly like that by a professional, I just couldn't deal with that, which lead me to divulge in my substance abuse problems, because I just didn't want to accept what he had told me. I wanted to 'wake up' from this nightmare, and be ignorant about my illness and, in a lot of ways, be in total denial as to how serious my illness actually was. Ignorance can be bliss, for some. But not when it comes to your health! We have one chance at this life, and once your health is gone, then most people take it one of two ways. They either a) be in total denial about the magnitude of their illness and/or make the decision to not see any doctors, ever again, and just die from their illness, or b) do all they can to prolong their lives, and become eager to know what can be done about their illness, and that's when the 'survival mode' kicks in. The will to live & the will to want to live and not give up. I've been torn between these two courses of actions, but, in the end, I've decided that I will not live in denial of my illness...I just can't. I've got too much to do, so many wonderful things to experience, things that I've yet to do with my life to just let it end here. Not like this, and not at this time. I've got too much to live for, and perhaps, in a way, everyone does, but not everyone can deal with all of these problems and continue to fight them.
It's just amazing that something that seemed so far off, is now right around the corner, and I hope that God gives me the courage to walk into that hospital, sign all paperwork and 'put my life in the surgeons hands'. That's going to be the hardest part, for me. Having to willingly give them my arm, have an IV put in, have the anesthesiologist inject me with general anesthesia knowing that there's a chance (even if it is a small one) that I may not wake up from this surgery. All of the things that I want to say to my friends & family before I go into surgery. That's going to be really hard for me, too.
I'm not going to be a 'drama-queen' and say my farewells to everyone prior to surgery, but I feel like maybe I should say something. Perhaps that's just something that i won't be able to do. All of this is very difficult and very real for me to accept. But, this is what needs to be done. My liver disease will only get worse over time, and it's not even the liver disease that will be fatal, it's the Pulmonary Arterial Hypertension. I've never truly understood how serious my PAH was/is. I should've realized that long ago, because I know how much that medication costs and it's insane! The Letairis costs $5,300 a month, and the Adcirca costs roughly $1,400 monthly. That's a lot of money and the doctor had to put in a special authorization to my insurance for that and it was approved (thank God!) because if they wouldn't cover that, then I'd already probably have one foot in the grave by now, maybe both!
So, I will keep advised as to how the screening for potential candidates for a living donor goes, and if there's anyone who wishes to know more about the living donor process, please feel free to contact me, and you can check out the links provided on this site, or email me and I will share that information with you. Just so you know, I'm blood type A+, meaning, that I can accept a potential donor who is: O+, O-, A+ or A-. Thanks! Till next time...
Thursday, February 9, 2012
Thursday, February 2, 2012
Time's up! The decision must be made...
What a bunch of drama! I hate to start off an entry like this, but there's really no better way to explain how I'm feeling right now. Ok, first off; I saw the liver specialist (Dr. Schiano) today, and I always leave there feeling like shit (and I know 'shit' ain't a feeling, but it is for some!), especially going there by myself and having to take all this in with no one to support me when I leave his office, feeling like an emotional train wreck!
Here's the situation: I had several questions that I wanted to bring up with him, and I wrote them down (since my memory is pretty bad), and I'll share here what the questions were and how they were answered.
Only those who've had to rely on others to give them the most precious gift of all...life, can truly know what it feels like to be in my shoes right now. Once you lose your health, nothing in the world can get it back, and you only have one chance at this life, and no amount of material possessions can buy you a new life, or buy you the health that you so desperately crave. It's really true. People have the power to help, but it's at a very high price, and I acknowledge that.
Who knows? Perhaps someone will get screened, and I will get my transplant before I lose the medical clearance that I've been fighting for since February of last year. But if someone is going to 'step up' and be a living donor for me, then they must do so now. I'd hate to go through all of the things I've already been through by losing my medical clearance.
I've also added a very resourceful link to what it entails to be a living liver donor, and how the generous gift of donation can effect someone's life. Please Click Here to read more.
Well, I'm getting mighty tired now, and this whole ordeal has totally worn me out! Till next time...
Here's the situation: I had several questions that I wanted to bring up with him, and I wrote them down (since my memory is pretty bad), and I'll share here what the questions were and how they were answered.
- Q-Recent lab results have shown that my AST, ALT & Alkaline Phosphotase have, strangely, shown normal, after being extremely high ever since I was diagnosed with liver disease. Why is that? Also, why are my RBC's, Hematocrit & Hemoglobin low?
- Q-What forms of Birth control can I get on?
- Q-I'm in serious need of Dental Implants. What are the chances of success, and I will I encounter rejection issues, since I need not only dental implants, but bone grafting and a sinus lift, as well?
- Q-I'm going to FL on May 9th until the 14th. Would it be advisable to get on the FL waiting list for a transplant? Would my NY Medicaid cover this? Is it more trouble than it's worth?
- Q-How long am I expected to be on the NY waiting list? What is the length of the medical clearance that I've just been given as of December 19th, 2011? The Pulmonologist informed me that if the transplant is not done in 6 months, another heart catheterization would be required. Is this true?
- Q-How can I get any potential living donors screened? What exactly does the process entail?
- Q-Is there any possibility that a liver transplant is not necessary? Has this ever been known to go away?
- Q-What is the life expectancy if I choose not to undergo surgery?
- Q-When can I be expected to have my liver transplant? Regardless of living donors, if I have to wait for a cadaver liver?
- Q-If I got a cadaver liver transplant, would it be a full liver? Is the wait time less if I was to get half of a cadaver liver?
- Q-Would my insurance pay for a home health aid/nurse attendant after my liver transplant? If so, for how long? If not, how long would I require, if at all, assistance with daily activities?
- Q-I've been feeling very depressed lately. Would it be harmful to get on some type of Anti-Depressants? (I can't believe I'm actually considering that, but for me at this point, I feel that it may help me with coping with all of this stress)
- The low HCT, RBC's & Hemoglobin means that I'm anemic. I should be taking Iron vitamin supplements.
- No oral contraceptives since they can cause clotting issues, and for someone who has PAH, that can be very dangerous.
- After transplant, when my PAH no longer requires medication (which, for 4 out of 5 people who have PAH and Cirrhosis, in one year the PAH goes away on it's own, post-transplant). No action for dental implants is advisable pre-transplant due to the PAH. Also, since my platelets are low, even by getting a platelet transfusion, the transfusion only raises the platelets for about one hour. Constant platelet transfusion can lead to serious transfusion reactions, such as, infection, pneumonia, and, worse of all, a sudden drop in my blood pressure, which will then have dire consequences on my PAH, which will result in death.
- Yes. FL has a much shorter waiting time than NY does. I need to contact the University of Miami, however, I would be required to live there for about 1-2 months, since the time it takes from when I get a phone call for a cadaver liver, I would need to be there in no more than 4 hours. Insufficient time to jump on a plane and fly to Miami from NY. I also need to ask them how long the wait time is for someone with a MELD score of 22 (my current MELD score was so low, it was like an 8, but due to the extenuating circumstances of the PAH, it's now increased from 8 to 22 and will continue to increase by 3 points every 3 months, but I would be required to have a heart catheterization every three fucken months!!! That's simply crazy! I've had 2 heart catheterizations in my life, and even with all the Fentonyl and Morphine that they give you, it's still hell!) NY Medicaid should cover all of this, it would be unnecessary for me to get FL medicaid, however, I would need to live in FL for the wait time that it would take for someone with a MELD of 22 (I think it would make more sense to get another heart catheterization in late April, so that I can go to FL with a MELD score of 25, which will make my wait time shorter) to get a liver transplant, which could be a month, or it could be more. I would also probably need to stay there for a little longer after I was to get my transplant, but can then come back home to NY and continue my post transplant care at Mount Sinai. I think this is a very difficult decision to make, however, because I won't have any of my family there with me when I go into a surgery that I may not wake up from. So, needless to say, that would be very hard.
- NY Wait time, even being a priority, and this is if my MELD remains at 22 (which I will probably 'bend-over' and get the heart catheterization to show that my PAH is still normal, like it is now. If it was to show up abnormal, then I would be off the list, have to go back through all the BS with the Pulmonologist & Cardiologist to have my PAH under control again, so that I can, once again, be medically cleared for surgery. There's simply no possibility that they will perform the surgery if my PAH is not stable, since I will die due to cardiac arrest during the surgery.
- For living donors, to find out if they're potential candidates (and all of this is in the link on the right side of this page, titled 'What Every Living Donor Needs to Know!'), they must have a blood type of O or A (+/- doesn't matter) and it's just a question of being in the physical condition to have an operation after that. The screening process is 2 days, that consists of vigorous testing (MRI's, CAT Scans, Blood work, etc.) and if shown to be a match, then there is no 'wait time' and a surgery date will be set. There's a telephone number for the transplant coordinator that would set all of this up, that is, if anybody is willing to undergo the risks involved in saving my life.
- No.
- My life expectancy is not in jeopardy from the liver disease. However, it's the PAH that will cause an early demise. If I choose not to get a liver transplant, then the odds of me living to see the age of 50 yrs old are less than 20%. Those who've had a liver transplant, and PAH, in one year, it goes away. This happens to 4 out of every 5 people who have cirrhosis and PAH.
- 9-12 months, if my MELD doesn't go up and stays at it's current 22. However, I believe that I will get more heart catheterizations so it can at least go up to the high 20's, but I can only get a heart catheterization every 3 months...no sooner! The 9-12 months can turn into more like 8 months if I get another heart catheterization or 2.
- Yes. It would be a full liver, not half, and it wouldn't change the wait time.
- My insurance should cover a home attendant, however, if they don't, then I will have to use my NFT Fundraising money to have a home health aid for about a month post-transplant.
- Yes, getting on an Anti-Depressent is not a bad idea. Just not Cymbalta since it's very damaging on the liver, which a lot of medication is)
Only those who've had to rely on others to give them the most precious gift of all...life, can truly know what it feels like to be in my shoes right now. Once you lose your health, nothing in the world can get it back, and you only have one chance at this life, and no amount of material possessions can buy you a new life, or buy you the health that you so desperately crave. It's really true. People have the power to help, but it's at a very high price, and I acknowledge that.
Who knows? Perhaps someone will get screened, and I will get my transplant before I lose the medical clearance that I've been fighting for since February of last year. But if someone is going to 'step up' and be a living donor for me, then they must do so now. I'd hate to go through all of the things I've already been through by losing my medical clearance.
I've also added a very resourceful link to what it entails to be a living liver donor, and how the generous gift of donation can effect someone's life. Please Click Here to read more.
Well, I'm getting mighty tired now, and this whole ordeal has totally worn me out! Till next time...
Friday, January 27, 2012
Starting the Chapter...
First off, I'd like to say to all out there, I've hope you had a wonderful holiday, and may this New Year be a great one for you, as well!
So, the 'Jitters' are really starting to affect me now...it's no longer a fictional (not that it ever was fictional, but perhaps, now, it's feeling a lot more real..hard to explain) event, but it's actually going to happen this year, and I speak of my liver transplant.
Regardless of living donor's, or lack thereof, I will have my liver transplant this year. As everyone knows, or if you don't know, now you do, I now have the medical clearance that I so desperately needed for my life-saving liver transplant. I have already seen the Cardiologist & Pulmonary Department at Mount Sinai Hospital, and I'm going to finally continue with the process of getting on the 'active' list on February 2nd. That's when I see my Liver specialist/transplant Dr.
I must say so myself, that the last week has given me lots of perspective, not just with my health issues, but with other issues as well. I've been so absorbed in my health, that I've not been giving much thought to what life will be like after my transplant. I guess, in simple terms, I still haven't decided what I want to be when I grow up! lol! I think that I've came to two decisions as far as that goes that a) I wish to travel the world and see more of other ways of life and b) I wish to study more...and not just for 'financial' gain, but just for the gain of enlightening my mind.
I'm going on a cruise this May, on a better note, to the Caribbean via Carnival Cruise, for 4 days of some much needed R&R. I'll be leaving at the port of Miami, returning at same location, to a private island that is owned by a band that I have highly admired throughout my life, 311. I've never seen them play live, and they will be performing 4 shows during the Cruise and I will also get a photograph with the band, as well.
So, back to the topic of this particular blog, regardless of living donor situation, which may still work out, after all, if I've learned anything from all of this, I've rekindled my religious beliefs that I've abandoned for many years, that the Lord works in mysterious ways, and if it's meant to be that I must wait for a cadaver donor, then so be it! My health is what's most important here, and in many ways, I don't wish to jeopardize anybody's life, even if they have the most honorable intentions. I just don't think that it'll work out and I certainly can't use coercion or 'emotional blackmail' to have someone do something that they simply don't wish to do. I should've really taken more consideration about that, and for that, I'm deeply regretful. Even though my Dr has told me that a living donor would be an ideal situation for me, I think this is my hole, so to speak, and I've dug it and I'm not expecting anyone to dig a hole for themselves in helping me get out of mine.
The Dr says the my Cirrhosis is Cryptogenic, which, doesn't actually mean 'unknown' Cirrhosis, because that would be more like Idiopathic Cirrhosis, but it means that I have Cirrhosis and there is a cause for it, but that cause cannot be verified. However, I'm pretty sure how my liver damage has occurred, as is my Dr, I'm pretty certain, which is due to my past substance abuse problems. All of that is irrelevant, however, because the simple fact is that I have Cirrhosis, it's here, regardless of the source, and I'm in need of a liver transplant due to this.
So, I will close here by saying that I will keep all informed as to what happens after February 2nd. Thanks for reading, as always! Till next time...
So, the 'Jitters' are really starting to affect me now...it's no longer a fictional (not that it ever was fictional, but perhaps, now, it's feeling a lot more real..hard to explain) event, but it's actually going to happen this year, and I speak of my liver transplant.
Regardless of living donor's, or lack thereof, I will have my liver transplant this year. As everyone knows, or if you don't know, now you do, I now have the medical clearance that I so desperately needed for my life-saving liver transplant. I have already seen the Cardiologist & Pulmonary Department at Mount Sinai Hospital, and I'm going to finally continue with the process of getting on the 'active' list on February 2nd. That's when I see my Liver specialist/transplant Dr.
I must say so myself, that the last week has given me lots of perspective, not just with my health issues, but with other issues as well. I've been so absorbed in my health, that I've not been giving much thought to what life will be like after my transplant. I guess, in simple terms, I still haven't decided what I want to be when I grow up! lol! I think that I've came to two decisions as far as that goes that a) I wish to travel the world and see more of other ways of life and b) I wish to study more...and not just for 'financial' gain, but just for the gain of enlightening my mind.
I'm going on a cruise this May, on a better note, to the Caribbean via Carnival Cruise, for 4 days of some much needed R&R. I'll be leaving at the port of Miami, returning at same location, to a private island that is owned by a band that I have highly admired throughout my life, 311. I've never seen them play live, and they will be performing 4 shows during the Cruise and I will also get a photograph with the band, as well.
So, back to the topic of this particular blog, regardless of living donor situation, which may still work out, after all, if I've learned anything from all of this, I've rekindled my religious beliefs that I've abandoned for many years, that the Lord works in mysterious ways, and if it's meant to be that I must wait for a cadaver donor, then so be it! My health is what's most important here, and in many ways, I don't wish to jeopardize anybody's life, even if they have the most honorable intentions. I just don't think that it'll work out and I certainly can't use coercion or 'emotional blackmail' to have someone do something that they simply don't wish to do. I should've really taken more consideration about that, and for that, I'm deeply regretful. Even though my Dr has told me that a living donor would be an ideal situation for me, I think this is my hole, so to speak, and I've dug it and I'm not expecting anyone to dig a hole for themselves in helping me get out of mine.
The Dr says the my Cirrhosis is Cryptogenic, which, doesn't actually mean 'unknown' Cirrhosis, because that would be more like Idiopathic Cirrhosis, but it means that I have Cirrhosis and there is a cause for it, but that cause cannot be verified. However, I'm pretty sure how my liver damage has occurred, as is my Dr, I'm pretty certain, which is due to my past substance abuse problems. All of that is irrelevant, however, because the simple fact is that I have Cirrhosis, it's here, regardless of the source, and I'm in need of a liver transplant due to this.
So, I will close here by saying that I will keep all informed as to what happens after February 2nd. Thanks for reading, as always! Till next time...
Friday, December 16, 2011
A bittersweet victory...
Well,I got my heart catheterization on Wednesday, and after 9 months of waiting...I finally got the medical clearance that I've been waiting so long for & thought I would never get. I'm now on the active list, and can proceed with getting the necessary steps taken to get my life-saving Liver transplant.
This may be a bittersweet victory for me. I'm uncertain if I now have any living donors to be screened & I hope I do. If I don't, then I will be waiting for another 9-12 months for a cadaver donor, which feels like a lifetime away. It may also be a death sentence. I don't know if my body can continue functioning for that long...and with all of the pain I'm already in...9-12 months more will be a God-awful nightmare. This means a year of going to the emergency room...getting more taps (paracentesis) done, possibly falling into comas, just to be brought out of them and sent home...I just don't think that I can take that.
I really do understand that it's a HUGE order to ask of anyone, especially since everyone is out for themselves...and if the shoe was on the other foot,I don't think I'd be volunteering to undergo an extremely invasive surgery for my family, but I can't help but be a little angry, well...not angry, but disappointed & depressed. It makes me feel like no one values my life. I was expecting this to happen & I tried to prepare for the worse, but now that I've FINALLY crossed this barrier that has been keeping progress from moving forward, I thought it would all be easy from now on.
I just feel like I have such a large family & assumed that someone would step up & wish to do this for me. I feel foolish in making that assumption.
Since I've started this blog, I've meet so many people that have had transplants, and have had successful living donor liver transplants, from family members that took that courageous, selfless, act to help their loved one, and I was pretty confident that someone would step up for me.
Perhaps I'm making unsubstantiated assumptions, I don't know, but it feels like a very hallow victory. Call me a pessimist, but I just don't think that anyone will wish to be screened for my living donor, or may get screened and then decide that the risks are way to high for them to consider. And the risks are high. I'm not minimizing it in any way, I know this is asking for something that most people would not want to give, even if it meant the suffering and death of a family member. The screening process is a vigorous one. The living donor will be assigned a 'counselor/advocate' who's job is to make sure that this person is not being coerced in any way, shape or form. In fact, I'd even go as far to say that this 'advocates' job is to discourage the person from donating, in a way. If the slightest hesitance is shown, then the plug would immediately be pulled, and this 'advocate' would not let the screening go any further.
This isn't something that I can ask someone to do. This is something that someone WANTS to do, is volunteering to do. Even though I feel like someone should be volunteering to do this, I cannot expect anything from anyone. Not unless they're whole-heartily volunteering to do this, because it's, what they feel, the 'right' thing to do.
I guess only time will tell at this point. They're other factors to be weighed in, as well. Does the living donor have the 6 weeks to take off of work without getting fired? Do they have children that will worry about them, and who need them? Are they healthy enough to undergo a surgery of this magnitude? Are they what's considered a 'high-risk' donor, due to medical conditions, and if so, is it in my best interest to live with whatever health issues that they will pass on to me?
So many questions...so much 'red-tape', yet so little time. It's extremely discouraging, and it's also very depressing. It really makes me realize how alone I am in this world. I'm not saying that I don't have anyone who cares for me, or that people don't care for me because they're not willing to do this...but, nonetheless, it's depressing.
So, I will see my Pulmonologist/Cardiologist on Monday, and all paperwork will go to my Liver Dr, and I will have to see him to plan the next stages of this journey...perhaps the final stages of this journey, perhaps the beginning, I don't know yet. Time will tell. Till next time...
This may be a bittersweet victory for me. I'm uncertain if I now have any living donors to be screened & I hope I do. If I don't, then I will be waiting for another 9-12 months for a cadaver donor, which feels like a lifetime away. It may also be a death sentence. I don't know if my body can continue functioning for that long...and with all of the pain I'm already in...9-12 months more will be a God-awful nightmare. This means a year of going to the emergency room...getting more taps (paracentesis) done, possibly falling into comas, just to be brought out of them and sent home...I just don't think that I can take that.
I really do understand that it's a HUGE order to ask of anyone, especially since everyone is out for themselves...and if the shoe was on the other foot,I don't think I'd be volunteering to undergo an extremely invasive surgery for my family, but I can't help but be a little angry, well...not angry, but disappointed & depressed. It makes me feel like no one values my life. I was expecting this to happen & I tried to prepare for the worse, but now that I've FINALLY crossed this barrier that has been keeping progress from moving forward, I thought it would all be easy from now on.
I just feel like I have such a large family & assumed that someone would step up & wish to do this for me. I feel foolish in making that assumption.
Since I've started this blog, I've meet so many people that have had transplants, and have had successful living donor liver transplants, from family members that took that courageous, selfless, act to help their loved one, and I was pretty confident that someone would step up for me.
Perhaps I'm making unsubstantiated assumptions, I don't know, but it feels like a very hallow victory. Call me a pessimist, but I just don't think that anyone will wish to be screened for my living donor, or may get screened and then decide that the risks are way to high for them to consider. And the risks are high. I'm not minimizing it in any way, I know this is asking for something that most people would not want to give, even if it meant the suffering and death of a family member. The screening process is a vigorous one. The living donor will be assigned a 'counselor/advocate' who's job is to make sure that this person is not being coerced in any way, shape or form. In fact, I'd even go as far to say that this 'advocates' job is to discourage the person from donating, in a way. If the slightest hesitance is shown, then the plug would immediately be pulled, and this 'advocate' would not let the screening go any further.
This isn't something that I can ask someone to do. This is something that someone WANTS to do, is volunteering to do. Even though I feel like someone should be volunteering to do this, I cannot expect anything from anyone. Not unless they're whole-heartily volunteering to do this, because it's, what they feel, the 'right' thing to do.
I guess only time will tell at this point. They're other factors to be weighed in, as well. Does the living donor have the 6 weeks to take off of work without getting fired? Do they have children that will worry about them, and who need them? Are they healthy enough to undergo a surgery of this magnitude? Are they what's considered a 'high-risk' donor, due to medical conditions, and if so, is it in my best interest to live with whatever health issues that they will pass on to me?
So many questions...so much 'red-tape', yet so little time. It's extremely discouraging, and it's also very depressing. It really makes me realize how alone I am in this world. I'm not saying that I don't have anyone who cares for me, or that people don't care for me because they're not willing to do this...but, nonetheless, it's depressing.
So, I will see my Pulmonologist/Cardiologist on Monday, and all paperwork will go to my Liver Dr, and I will have to see him to plan the next stages of this journey...perhaps the final stages of this journey, perhaps the beginning, I don't know yet. Time will tell. Till next time...
Tuesday, December 6, 2011
Taking a Second Shot...
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I'm having my right side heart catheterization, again, at the middle of this month (the Dr has yet to given me a date, although she said it would be the middle of December, probably near Christmas) to determine if I am medically cleared for surgery...or not.
I've been in this position once before, 3 months ago, and was sorely disappointed when I did not get the medical clearance, however, I feel this time may be different. My Dr. has not discussed putting me on more medication, and has not even discussed what would happen if I don't get medical clearance. I sure hope I do. I've been experiencing horrific pains, and they're more constant than ever. I sometimes feel like they're just letting me die...and if they are, why prolong the process and make me suffer unnecessarily? These pains are so bad, even with the Percocet that the Dr prescribed for me, it does nothing. I feel completely and utterly useless. Like I serve no purpose other than to take up space and breathe air. These pains come so frequent and hard, that I can't even leave my house without the fear that I'll be forced to stop in the middle of what I'm doing to take a car service home.
Perhaps I should try to get out more often. I find when I'm outside and walking around, the pains usually don't come. It's when I'm immobile that the pain comes, and although when it comes it's completely debilitating, and my instincts are to just lie on the bed, in fetal position, until it subsides (which it takes sometimes hours for it to subside, and when you're pain level is past the point of tolerable, hours seem like lifetimes), but I discovered that by going against my instinct, and mustering all the energy that I have, standing up and walking around sometimes alleviates it. It's very weird, and I don't know if I'm explaining it all that clearly. But, that's about how it feels.
I went to the Emergency Room at Mount Sinai a few weeks ago. The stitches on my leg needed to be removed and the abscess needed to be cut open and drained, which, by the way, the Dr. did with no anesthesia whatsoever. It wasn't as painful as it sounds though. Once he removed the stitches, I could see that it wasn't fully healed, and my Dermatologist told me that it wouldn't heal, since it was still leaking with nasty fluid (mostly very light colored blood). But I was kind of surprised when the Dr at the ER pulled out a scalpel and did a little cutting, to get it more open. He was pushing it so hard, and it was just oozing out, I knew what was going to happen, as I'm sure he did, as well. I could still feel a very hard ball underneath, which was what needed to be drained, and sure enough, he kept pressing and it just squirted out like a fountain.
They did a culture on what it was, and it was determined to be infected, so about 1-2 days after I went to the ER, I was given an antibiotic called Bactrim, and I've never had any allergic reactions to any medications before, but this appeared on my arm (the red bumps in the picture) and my skin was very itchy and felt prickly. The Dermatologist was convinced that this was an allergic reaction and suggested that I stop taking the antibiotic, Bactrim, immediately. So I did, but I wasn't put on another antibiotic, and my body's White Blood Cells are too low to fight off this infection on it's own, and it's not healing properly, it's still oozing.
So, I've yet to have the date for the right sided catheterization, but, I do have faith that I will get the medical clearance that I need for surgery, and once I get the medical clearance, then living donors can get screened, and if found to be a match, a surgery date can be set. I'm still a long ways from that happening, but once it starts to happen, at least I know that the 'gears are grinding', so to speak, because I feel like my treatment has come to a complete stand-still and while the Pulmonary Hypertension Unit is trying to 'stabilize' my PAH, my liver and spleen are deteriorating at a rapid rate. Soon, I hope, I can finally start my life-long journey to recovery. I will post once I get my heart catheterization...wish me luck! Till next time...
I'm having my right side heart catheterization, again, at the middle of this month (the Dr has yet to given me a date, although she said it would be the middle of December, probably near Christmas) to determine if I am medically cleared for surgery...or not.
I've been in this position once before, 3 months ago, and was sorely disappointed when I did not get the medical clearance, however, I feel this time may be different. My Dr. has not discussed putting me on more medication, and has not even discussed what would happen if I don't get medical clearance. I sure hope I do. I've been experiencing horrific pains, and they're more constant than ever. I sometimes feel like they're just letting me die...and if they are, why prolong the process and make me suffer unnecessarily? These pains are so bad, even with the Percocet that the Dr prescribed for me, it does nothing. I feel completely and utterly useless. Like I serve no purpose other than to take up space and breathe air. These pains come so frequent and hard, that I can't even leave my house without the fear that I'll be forced to stop in the middle of what I'm doing to take a car service home.
Perhaps I should try to get out more often. I find when I'm outside and walking around, the pains usually don't come. It's when I'm immobile that the pain comes, and although when it comes it's completely debilitating, and my instincts are to just lie on the bed, in fetal position, until it subsides (which it takes sometimes hours for it to subside, and when you're pain level is past the point of tolerable, hours seem like lifetimes), but I discovered that by going against my instinct, and mustering all the energy that I have, standing up and walking around sometimes alleviates it. It's very weird, and I don't know if I'm explaining it all that clearly. But, that's about how it feels.
I went to the Emergency Room at Mount Sinai a few weeks ago. The stitches on my leg needed to be removed and the abscess needed to be cut open and drained, which, by the way, the Dr. did with no anesthesia whatsoever. It wasn't as painful as it sounds though. Once he removed the stitches, I could see that it wasn't fully healed, and my Dermatologist told me that it wouldn't heal, since it was still leaking with nasty fluid (mostly very light colored blood). But I was kind of surprised when the Dr at the ER pulled out a scalpel and did a little cutting, to get it more open. He was pushing it so hard, and it was just oozing out, I knew what was going to happen, as I'm sure he did, as well. I could still feel a very hard ball underneath, which was what needed to be drained, and sure enough, he kept pressing and it just squirted out like a fountain.
So, I've yet to have the date for the right sided catheterization, but, I do have faith that I will get the medical clearance that I need for surgery, and once I get the medical clearance, then living donors can get screened, and if found to be a match, a surgery date can be set. I'm still a long ways from that happening, but once it starts to happen, at least I know that the 'gears are grinding', so to speak, because I feel like my treatment has come to a complete stand-still and while the Pulmonary Hypertension Unit is trying to 'stabilize' my PAH, my liver and spleen are deteriorating at a rapid rate. Soon, I hope, I can finally start my life-long journey to recovery. I will post once I get my heart catheterization...wish me luck! Till next time...
Wednesday, November 16, 2011
Holding my breath...
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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...
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...
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....
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