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...

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! ;-)

More bad news...

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Well, I didn't get the medical clearance that I need for my transplant.  The right side of my heart still has a significant amount of hypertension, so I am being put on a medication called 'Letairis', and this Letairis has some serious effects on the liver. 

More itching, which I'm itching like crazy already, and when I do itch, a tiny scab can cause alot of bleeding, so, this is a side effect of Letairis, as well as Jaundice, which is a symptom I've yet to experience, and stomach pains, which I already have dibilitating stomach pains, and heart palpitations, and to me, it just seems like this new medication is going to put an extreme amount of damage on my liver.  I really am at the point where I don't trust any of these Dr's at Mt. Sinai, who like to play god with my life!  This never ends!!

I'm making a decision, and it's entirely up to me to make this decision.  I've been thinking of the 'quality of life' that will be given to me after my transplant, and I don't think I want that quality of life; constantly going to the Dr's, fighting for a chance at survival when I may die anyway, and my attitude towards this has faded overnight, it seems.  I have no more fight in me.  I can't take any more bad news, it's destroying me.  I can't take the fact that these 'Dr's' are like my baby-sitters, and I have to ask permission for anything I do.  And it will never end!!  Life post-transplant isn't going to be any better than the life I'm living now.  I will never be 'healthy' again, I will always be on hard-core medication, having to see these a-hole Dr's on the regular, I just don't think I can do it.

I know that people care about me, and they want for me to have a long life, but, if this is the kind of life that's going to be in store for me, than...I don't want it.  If this is God's will that I die from this illness, so be it.  I want to enjoy the life I have now and not have to have myself and my entire family constantly worrying about me.

I have some major decisions to make, and I will not make them lightly.  But, I am considering leaving the transplant clinic, eating a healthy diet, and when the time comes that my liver is just too weak to go on, then I want to go on.  I feel like nobody's even bothered to ask me if this 'quality of life' is what I want.  To be forever on SSI, forever disabled, forever seeing these Dr's, and death awaits us all!  Is this really worth it to 'extend my life' for who knows how long, and have my family in constant worry & putting my loved ones in jeopardy for me? I don't want to put others, especially my family, in unneccesary peril and danger to themselves just so I can extend a few yr's on my life!  I would rather enjoy the time I have, now, with my family and son, and when the time comes for me to leave this earth, it comes.  Who am I to interfere with what God has in store for me?

What I guess I'm saying, and I'm sure it's very hard for everyone to understand, but I would like the last yr's of my life to be stress-free, and happy.  I don't want to die on an operating table, or from a massive infection/rejection of a liver.  I want to enjoy what I have now, and cherish these moments.

I don't know, I'm just so sick and tired of these constant, never-ending Dr's appts, tests, being poked and prodded, having to get 'permission' from a Dr in order to do anything! It's not like they seem so adamant on 'saving my life' anyways.  All they're concerned about is, 'Is her insurance going to pay us for this & that?'  It makes me sick to my stomach that these Dr's have the final say on every single thing that I do!  I don't know, I'm just losing all of my bravado and ignorance is definately bliss!

I just feel like this is a never ending cycle that will never stop, and I will be seeing Dr's for the rest of my life, & I'm really not ready for that, I have a deep mistrust of Dr's, and with good reason.  I've been lied to by Dr's before, and I don't see that changing!

Well, I will keep everyone posted, please leave a comment if you have any advice.  Thanks!

As the world turns...

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Things are unraveling not so fast as I thought, or maybe too fast.  I saw my Pulmonologist yesterday and basically, had a few questions that I wanted to clear up.  I wanted to know the reason for all of these 'appointments', and just to make sure we're on the same page, I wanted to be sure that the reason was to get my medical clearance for surgery. 

As with most Dr's, the right hand didn't know what the left hand was doing...no surprise to me.  She had no idea that my Liver Specialist had sent me to her for medical clearance, what the status was for my transplant, or anything like that.  All she knew, is that I was referred to her, as a pre-liver transplant patient, and needed my PAH (Pulmonary Arterial Hypertension) evaluated.  Now, she had all prior info on the heart catheterization that I had done in March, and based on the levels of pressure in my arteries, I was not clear for surgery.  That's when I was going to Belleview and was put on Viagra (Revatio).  It's been 5 months now that I've been taking the Viagra (time sure does fly...) and, these three tests are needed to determine how the Viagra has changed the PAH.  She (when I refer to 'she', I'm referring to my Pulmonologist, BTW) told me that enough time has elapsed to now show on the Echo cardiogram and Pulmonary Perfusion Imaging tests that they should be able to see the full effects that the Viagra has had on my PAH. 

Now, back in March of this year, when I had the heart catheterization done, I was told before undergoing the procedure that if the pressure was too high, that they would put a stent in my heart, right then and there.  They did not.  I asked her why a stent wasn't put in back in March when I had the Catheterization, if the pressures were so high.  She gave me an important answer that I was not aware of: the heart has 4 chambers, 2 on the left, 2 on the right...the only way that a stent can be placed in the arteries is if theirs hypertension in one of those main chambers.  That's not what PAH is.  It's the arteries that go from my heart to my lungs that have hypertension, thus the name, Pulmonary (lungs) Arterial (in the arteries) Hypertension (high pressure).  Makes sense, right?  So, I asked her why didn't a stent get put into the arteries from my heart to my lungs?  She said that's impossible.  The arteries from the heart to the lungs are on a microscopic level, therefor nothing can be placed in such small arteries to make them expand, this has to be done with medication, to treat the PAH.  Which is what I've been on, the Viagra, since my catheterization results.

Now, there is a bright side, as there usually always is (and me being the eternal pessimist, it's hard for me to say that!), and that is the Pulmonary Function test results that I did on the 8th of this month.  Those test results came back GREAT!  Now, the Pulmonary Function Test is to check the lung capacity, check for blockage in any airways, to see how long I can walk without feeling completely winded, and to see if my lungs are expanding like a normal (more healthy) person.  On the overall, I scored a 76%, and someone without health problems, has a score starting at 70% and up.  So, I'm within normal range.  That means a few things.  It means that my liver/spleen, as big as they are, are still allowing my lungs to expand and are not being hindered (yet) by the hugeness of the liver/spleen.  Also, it means that my lungs are making up for the deficit of my liver, which can only come from one source; the heart.  On the walking test, what they do is get your baseline heart rate, have you walk back and forth for 6 minutes, and each minute, they check this little box that I hold that's attached to my index finger, to check the heart rate.  So, my heart rate was at a 'normal' baseline to start off with, which is good, and it fluctuated during the 6 minute walk (which it should, since as you exert energy, it's only natural for the heart to respond), and they measure what's called the 'come down' meaning after the 6 minute walk, you sit down and they see how long it takes for your heart to reach it's beginning 'baseline'.  This can take up to 6 minutes to happen.  For me, it took 2 minutes, which is awesome! She measured for 3 minutes to be sure that it would stay at that rate and it did. 

These are all good things.  If I do as well on the Echo and the Pulmonary Function tests, then I will get my medical clearance, and things can more forward.  I was also given two puffs of Ventolin throughout this test, since I was prescribed it, once upon a time, and they wanted to see how big a difference it made.  It did make an impressionable difference, so these are all things the Anesthesiologist will need to know before 'putting me under', so I will be given some Ventolin before I go into surgery. 

Unfortunately, my pessemistic attitude can't help but wonder the other possibilities, and it's more than that.  She told me to sign an authorization for my insurance, to approve (I forgot the name, and hopefully, I won't need to know it!) another medication, in the interest of not wasting more precious time, for more medication that I may need.  These last 2 tests are the most crutial ones.  Because PAH shows it's damage in the heart, moreso than in the lungs, and these last 2 tests are testing my heart.  They will be able to get an idea of my heart function through these tests and see the Viagras full effects.  If those effects are not enough to certify me for clearance, than I will be taking this new medication, and in three months time, I will have to get another heart catheterization done.  I really hope that this doesn't happen, and I feel like it's what's going to happen, since they're already having me sign approval's for more medication, I almost feel like I'm being resigned to this fate.  She didn't know that her 'medical approval' for surgery will be the vital kick-off to start the surgery that I need to prolong my life (I hate saying 'save my life', because no life can be saved, death is inevitable, it can only be prolonged, no matter how old you are, and whether it's prolonged for a minute, or fifty years). 

It all boils down to how well I do on these two tests on the 26th and I'm chewing my fingers to stumps till then!  On a different topic, I have my son staying over right now, and he's been bugging me to watch this new xbox game that he borrowed from his friend, so I'm surprised that I've been able to gather my thoughts for this long!

So, I'll check in (maybe) before the 26th, even though, most likely, when I get these tests done, they won't let me know how well I did on them until the 29th, when I get a phone call from Mt. Sinai probably telling me that they're sending the prescription electronically to my pharmacy!  I hate to sound so pessimistic, but I feel like that's what is going to happen.  Anyways, she's not going to be in on the 29th, which is when I was originally supposed to see her, not yesterday, and she's just left instructions to her PA (Physicians Assistant) on how to handle this when the results come in.  I'm keeping my fingers & toes crossed!  Till next time...

More Appt's & MELD & grt links...

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Well, I am going to see the pulmonologist & cardiologist at Mt. Sinai Recanti/Miller Transplantation Institute Monday, July 11th. I LOVE Mt. Sinai because EVERYTHING is centralized there. They have all medical specialists to deal w/the problems that come from Liver/Kidney Transplant patients. It's great, cause I'm so sick of being the 'hot potato' of other Dr.'s. I've been referred to so many Dr's so many times, I've lost count...all I know is I've been being tossed around since 2007, and I've had my initial pre-transplant appt at Mt. Sinai on May 26th of this year! Anyways, thanks to all out there who have been helping me learn more about this & it just feels good to talk to others who knows what I'm going through. My Dr. also thinks this blog is good because it helps me spread the word of how serious Liver Disease is, and that it doesn't only happen to alcoholics, or people with Hepatitis, or the Elderly. Granted, I know that I am not a 'normal' Cirrhotic. Being a 30yr old Hispanic Female with Cryptogenic (unknown) Cirrhosis is not commonly heard of.
Once I go to this appt for the Cardiologist & Pulmonologist to review my Pulmonary Arterial Hypertension (PAH), which can be shown in detail on the Heart Catheterization I had done on March 13, 2011, which I do know came back prertty bad, my MELD# will go up and I will be continutally seen every 3 months to evaluate what my MELD should be.

However, I found some good links for those with Liver Disease: http://healthtools.aarp.org/adamcontent/liver-disease This link shows you about ALL TYPES of Liver Disease

http://www.allabouthepc.com/hepc/index.jsp This link shows ALL YOU NEED TO KNOW about Hepatitis C

http://www.nlm.nih.gov/medlineplus/ency/article/002441.htm This link can be followed via Twitter and shows the diet someone with Liver Disease should follow and it also explains why you should follow that diet, which I really like! I don't like being told what to do without explanation, I don't think anyone does! lol

Well, that's all for now, hope everyone is well! I will post late Mon or Tue and write about how the Appt went. I will know my new MELD# 2 weeks after this appt, but I'm pretty certain it will go over 15, so I can get on the 'Active' Liver Transplant List. As of right now, I am on the Transplant list, just not the 'Active' transplant list, but after Monday when the Dr's evaluate my PAH, that will all change. I know the Dr's objective is to 'run out the mileage' on the liver I have now, which is fine; however, I just want to get it over with at the same time. I've already experienced most of the effects of Liver Disease, not to mention effects of the PAH, which includes blackouts. This is no way to live & I do get frustrated that nothing can be done to counteract these symptoms. This all goes with the territory of having Liver Disease, so these are things that are out of my hands and I have to trust it into Gods hands now and I will. Well, have a blessed weekend, everybody, and ttyl!

Those who have contacted me...

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I would sincerely like to thank all of those who had sent me links, info, and other stories about people like me. I find it astounding that their are so many of us out there going through this same nightmare! But, I think it will give us strength & hope by sharing our stories with one another, be it if you are pre or post transplant. I have met a few people who are post transplant and I would like to know what I have to 'look forward' to. I know it's only going to get harder before it gets easier, but I'm at one of the best hospitals there is in NYC, and that's Mt. Sinai Recanti/Miller Transplantation Institute. They have EVERYTHING centralized in this one building on the upper east side & since I have Pulmonary Arterial Hypertension (PAH) as well, I am going to see the Cardiologist & Pulmonologist at the same time to discuss my PAH, which qualifies as a 'special circumstance' that will increase my MELD# which is currently at 12, but that is solely based on the 3 liver enzymes they check for. Once the Cardiologist&Pulmonologist look at my case & see my Right Heart Catheterization & Echogardiogram results I took, they feel that I need to be on more medication (sure, why not? I'm already taking 10 damned pills a day, what's more going to do!?). Currently, I am taking (believe it or not) Viagra for my PAH, since I am a Cirrhotic & I can't take any of the other medications that would normally treat PAH, and the Pulmonologist said that it's good that I'm already taking that, but she said I will need more medication & when I do see them July 11th, I will also tell them that I feel like my tummy is going to burst & I'm having difficulty in taking deep breaths. I'm constantly yawning, and this is due to the PAH because there is a lack of oxygen in my body, the Dr's could tell just by looking at my Catheterization results & my fingertips, which, they referred to as "clubbed" meaning that the nails grow kinda downward and my fingertips are more rounded at the end.

What I love about Mt. Sinai is that the Dr's there are like Teflon. NOTHING SURPRISES THEM! They have seen the worse of the worse & I had a HORRIBLE experience at a state hospital called Woodhull when I wanted to get the results of my Cardiac Catheterization, 3 Cardiologists came into the room and were writing frantically, speaking frantically, making me feel like I have the worse health in the ENTIRE WORLD. Mt. Sinai doesn't react like that. The Cardiologist I spoke to, he said "We would never 'freak out' like that in front of a patient, we know by the time people get to this Institute, they have been on a Dr. seeking roller coaster. I am not minimizing your illness, you do have PAH, it would be better if you didn't, but you do, so we are going to treat it best we know how to" That was comforting, but at the same time, it was a little disstressing to know that these 'teflon' Dr's have seen it all! Nothing surprises them anymore! Well, that's all for now, folks, hope all is well & please say a prayer for those who will never know what life is like w/o Liver Disease who are no longer with us. God Bless.