What's been going on...

Well, it's been a long time since I've posted an entry here and that's because there's really nothing I have to say.  No good news, in fact, quite the opposite.  I've been taken off the list in NY cause I've missed my doctor's appointments.

This was no accident.  At times, I feel like I want to get this over with, but as of late, I'm just really stressed out and have made some major changes in my life that take some getting used to.  I'm going to go back to the transplant clinic and get re-listed  but 'when' is the question.  I feel fine & I'm in no hurry to get a major organ replaced and, very possibly, bring about a whole new set of health issues that are worse than what I'm dealing with now.

While I've made a fantastic accomplishment, and by that, I'm referring to the fact that I've been off methadone since January 31, 2013, making it almost 3 months now.  Jeez...feels a helluva lot longer than that.  I've made the transition to get on Suboxone, which for the first week, I thought I was going to die, but I'm now well adjusted on my dose.  I get it from my PCP, so no BS clinic to go to, and I've started seeing a therapist, which I am hopeful of the outcome of that.  However, I've been on a pretty destructive path as of late and I'm really trying to control it and I refer to drinking.  At first, it was just a glass or 2 of wine on the weekends but it's now turned into a lot more, and that's just about the worse thing that I can be doing now.

So, instead of cutting me off from everything (by everything, I mean cigarettes, xanax, and the drinking) all at once, which would be extraordinarily stressful on me and could quiet possibly lead me to a very horrible relapse) I'm getting rid of one thing at a time.  I'm going to cut down on everything, then one by one, cut it out altogether.  I think that's the smart way to do it.  I cannot go back to the Dr if there's alcohol in my system and I know that it takes FOREVER for my system to get rid of stuff, so I'd give it a week.

On a better note, I'm going to an awesome concert, family reunion and Puerto Rico this July.  Since my son will be with me this summer, I'm very hopeful that by the time summer is over, I'll be rid of all these bad new habits.  My son gives me the strength that I need, strength that no one else can give me, cause he's the one who needs me the most.  Not that I'm unappreciative of well-wishers, but when it comes down to it, my death would mean nothing more than "Wow! It's a shame she died so young".  But for my son, it would devastate his life forever and that's something that I just won't allow to happen.

Well, that's about all I've got to say as of right now.  Till next time...

Cut my losses?

I'm extremely disappointed at how things have turned out in the last few days.  I'll fill you in on that now.  I've done everything that I was asked to do, in order to get listed here in FL.  I've done the colonoscopy, 2 mammograms, seen a Pulmonologist, got dental clearance, and saw a psychiatrist, yet again, to get psychiatric clearance.  All of that has been done.

Finally, I go to get listed, and I'm now listed with my biological MELD of 8.  What the surgeon is concerned about now, is the steady decline in my MELD score.  The MELD usually gets higher, not lower, over time.  He now wants to know if my PAH is due to the liver disease, if they're linked in any way, or if I have PPAH, and not APAH (Primary Pulmonary Arterial Hypertension, or Associated PAH).  He's now telling me that since my MELD is getting lower, that there's no urgency to get a liver transplant.  I do understand his viewpoint, however, it's pretty irrelevant, since it's already been determined that I do need a liver transplant.  The whole 'when' point, is one that we're seriously butting heads on.

I may not be dying right now, and my liver is obviously still functioning in a limited capacity, but the heart of the matter is that I came to FL for the sole purpose of getting my transplant faster, as opposed to waiting in NY.  I'm still listed with my upgraded MELD score of 22 in NY, and I'm actually due for another heart catheterization if I wish to stay listed in NY, and have my MELD upgraded, once again, to 25.  I've asked Mt. Sinai if I was to get the heart catheterization here, if that would be sufficient to have my MELD upgraded again.

So, the surgeon here in FL, wants me to see a PAH specialist, which I've got no problem doing, but he's not going to even attempt to have my MELD upgraded here in FL.  That's going to take, yet again, more time.  I now have an HMO, so I must see my Primary Care Physician to get a referral to see the PAH specialist, and then I can make an appointment with the PAH specialist, where I'll be evaluated as to whether my PAH is Associated (which it most likely is) or if it's Primary (if it were Primary PAH, than I'd need to be on a lot more stronger medication.  Mt. Sinai has accepted the fact that I have APAH, so that's good enough for me).

If it's PPAH, than a liver transplant can actually cause more harm than good.  It can actually cause death during the transplant.  I really wish that I know someone who's had PAH & a liver transplant, just to know what it is that they had to go through to get listed.  Anyways, the way that I see it, is the PAH Specialist will, most likely, want another heart catheterization.  If that's the case, than will I get listed with my upgraded MELD in FL?  Probably not.  I'd probably have to wait until the heart catheterization is performed and the results are in.  The question that I've asked Mt. Sinai, is that if I get a heart catheterization here in FL, and if they fax the results to them, will that be sufficient to have my MELD upgraded yet again, in NY to 25?  If so, than it's probably worth it to get the heart catheterization done here in FL, because not only will I finally get listed with an upgraded MELD, but I'll be listed in NY with an upgraded MELD, as well.  The problem is:  Can I tolerate staying here that long, alone?  I'm not so sure anymore that I can.  I told the surgeon that I was planning on being home in time for Thanksgiving and he said that's an unrealistic expectation.

What I see happening here is that the rules seem to be changing every time that I go to the transplant clinic.  I was asked to see a Pulmonologist, and I did, and he said that I'm still medically cleared for surgery.  Now, he wants me to see a PAH Specialist.  I've got no problem doing that, but I'd rather get listed with my upgraded MELD score now, rather than later.  I mean, what is the PAH Specialist going to tell this surgeon that he doesn't already know without performing numerous tests on me?  Then what?  I'll have to wait until all these tests get performed and the results come in?  It's just something that I can see going on & on.

Regardless, I'm not leaving FL as of right now, due to the simple fact that I've already paid to have dental work done, and it's getting done as we speak.  Rick Hirsch has been on vacation and will not be coming back until Monday, the 13th. I'd really like to have a little talk with him about all of this.  I'll know a lot more in 2 weeks, as to what's going on and a better time frame of how long I would have to be here in FL until I get listed with my upgraded MELD, and once upgraded, how long will it take until I get called in for my transplant.  I'm pretty much 50/50 as of right this moment.  I'll know more in 2 weeks, and I'll write another post then.  Till next time...

Seriously freaking out...

Here's a little update from today's earlier entry.  Broward General Medical Center just called me back, and I'm going in on August 8th, where I'll finally be listed.  However, I'll be listed with my biological MELD score of 9, then, most likely by that Friday, I'll be listed with my upgraded MELD of 22.

This is all very nerve-wracking.  Things are happening so fast.  This means, that in just 2-3 short, little weeks from now, I could be undergoing the most important surgery of my entire life; one that any human being should never have to undergo, and one that very few people have undergone.

There's a vaccine that I must get, I think it's the pneumonia vaccine, but the coordinator told me that it's actually a vaccine that's given only to people who are going to be on immuno-suppressant medication, since my immune system will be suppressed, so that my body doesn't reject the organ.  I also have to tell my dentist (and I'm certain that he's NOT going to be happy about this...possibly might tell me to get the hell out of his office) to write a letter, to the Transplant Clinic, stating that I have no loose teeth or open sores in my mouth.  I asked why this is important, and I was told this: "During surgery, if there's any loose teeth in your mouth, they could get knocked out and get lodged in your lungs.  The mouth is generally a dirty place to begin with, but if there's any open sores, than that infection will make it's way into your blood stream."

This is all so crazy!  The emotional part of me is screaming 'Go home!!  Get away while you can!  WTF are you thinking?' and the more logical part of me is saying 'Good.  Let's just get this over with already, before I change my mind'.

My whole life I've ran from problems.  I've seldom looked a problem in the eye, so to speak, and just dealt with the consequences.  It's almost like it's in my nature to run & hide.  I'm not running & hiding, and this is totally going against everything that I've ever done in my life.  If there was ever a time to 'run & hide', it would be now.  This is serious business.  I've had nightmares about this.  My life's been seriously interrupted by my health problems, and I've grown accustomed to it.  I try to think positively and tell myself that this is the beginning of a new life for me, a chance to start over.  I feel too old to 'start over'.  I've started over too many times already, put in half-hearted attempts at change, and for me especially, change is scary.  Fact is, I don't know what life's going to be like once I get my transplant, and that's uncharted waters for me.

Regardless of what's going to happen, I've just got to suck it up, soldier on, and get this over with.  I'll write another entry on next Monday.  Till next time...

All systems a go...

I've seen the psychiatrist, here in FL on Saturday.  He wrote a book, pretty much, but as I have said, he asked me "Why are you here?  You've already got psychiatric clearance from NY."  I agreed with his assessment, as it's true, but the surgeon insisted that I see a psychiatrist in FL, and even the psychiatrist, once I told him of my awful experience with the surgeon, agreed with me that this particular surgeon has absolutely no bedside manners, as a lot of surgeons do.

His conclusion is that I'm very well informed about my health condition, and I'm fully prepared to undergo surgery.  So, psychiatric clearance has been, once again, granted.  This was the last thing that was required of me to do prior to being listed.  So, as of right now, all systems are a go!

As I've said in my previous entry, I will first be listed, here in FL, with my biological MELD score of 9 (which is nothing), and my case will be brought before the UNOS committee, and, legally, they've got 21 days to respond, however, the Transplant Coordinator, Rick Hirsch, said to me that he's never seen it take longer than 4 business days.  Furthermore, he said that in my case, it'll be more simple for them due to the fact that my biological MELD score has already been raised in another state.

As luck would have it, Mr. Hirsch is on vacation until the 15th of August.  There's someone filling in for him, but they're not fully abreast as to what Mr. Hirsch said to me, personally, but they can still do what needs to be done in his absence.  What needs to be done, is basically having me see the wonderful (yes, I'm being facetious!) Dr. Selvaggi, again, showing that I've been granted (yet again) both medical & psychiatric clearance to get listed in the Great State of FL (again...I'm being facetious).  I'll be listed, as of that day, only with my biological MELD of 9, and whoever is covering for Mr. Hirsch in his absence, will make the appeal to UNOS about having my MELD raised on the basis of my PAH condition.  This should, hopefully, take no more than 5 business days after I'm listed.  Once that happens (which will probably coincide with Mr. Hirsch's arrival back from vacation, then it's just a matter of getting that phone call.

I've been thinking a lot about that phone call.  Whenever my phone will ring, my heart will skip a beat.  I'm almost certain that those who've had transplants in the past have probably felt the same exact thing.  I'll have a small bag packed with undergarments, a few personal effects, and toiletries, as well as medications (which are already in a big plastic bag).  Then, I'll call a taxi, to go to the hospital where my life will change forever.  On the way to the hospital, I'll call my mother, my boyfriend, and my very good friend.  I've already decided that I won't call my son, as badly as I'd like to, for the simple fact that he's not in FL, there's absolutely nothing that he can do to help me, quite the contrary, he'll be unnecessarily traumatized.  I'll call him after the surgery, to let him know that everything went all right, and that I'll be seeing him soon.

I've also thought about the whole '90 days' that I'm supposed to stay here, once I'm post-op, and I've decided that if I'm feeling better prior to these 90 days, then I'm going to go back home to NY.  What can the hospital do?  Take the liver back?  I'm just so far from my family & friends that even my own mother told me "Do you know how hard it's going to be , for me, to just go home and leave you in FL while you're recovering?"

I don't know how hard it'll be, but having a child of my own, I can only imagine that it'll probably be the hardest thing that a parent can ever do.  Perhaps not 'the hardest', but it's definitely one of the hardest.  The simple fact remains though:  I need this operation to save my life.  There should be no weeping while I'm recovering, because my life is going to be so much better once it's all over.  That's the way I see it, and I'd like to think that's the way my family & friends should be seeing it, too.

As for FL, I'd be lying if I said that I've grown accustomed to it here, because I certainly have not.  Not to say, like my best friend told me, "NY is not the center of the universe.  The more you travel & see other places, the more you realize that."  However, NY is where my life is and there's no other place I'd like to be.

I'm waiting, at this moment, for the Transplant Clinic to call me back, to make the appointment to see Dr. Selvaggi again.  The psychiatrist told me that they're going to have to type up all of his notes (which seems like quite a large task, since he wrote about 10 pages during the appointment) and once typed up, then he'll fax over his assessment of my psychiatric clearance.  He told me this should be done by Tuesday, but I'm going to call today to see if it's possible for them to just fax a more basic letter today stating that I'm cleared for surgery, psychologically.

If all runs smoothly, then I should be listed, with my upgraded MELD of 22 by the 2nd week of August.  It's exciting, relieving, and terrifying, all at the same time.  It's out of my hands now, and into Gods hands, which is where it'll stay.  Till next time...

Seeing the surgeon...

I finally saw the surgeon on Monday, and to be honest, I was very disappointed!  He wasn't the nicest guy I've met, and everything was going so smoothly until I saw him, Dr. Selvaggi (the surgeon who came so highly recommended).

First off, the colonoscopy went well, I've got no polyps or anything like that, so that's fine.  However, my mammogram didn't go as well.  I have to get a second, more detailed mammogram done because my results came back abnormal, showing that I have calcification in my breasts.  This is nothing to be concerned about, hopefully, but I can't really afford to dwell on that right now.

So, Dr. Selvaggi actually said to me "You're not the first person who came to FL shopping for an organ".  I couldn't believe a doctor would actually say that!  I've uprooted my entire life to come here, subjected myself to all of their tests and he was talking to me like I'm something stuck on the bottom of his shoe!

Regardless, he said that my psychiatric clearance was 'vague at best', which is SO untrue because I did get psychiatric clearance to be listed.  I wouldn't be listed with UNOS if I didn't get psychiatric clearance!  So, I've got to see a psychologist here, in FL, to get psychiatric clearance, once again, and I've also got to see a Pulmonologist so that they can overlook my recent heart catheterization results and confirm that Dr. Ajith Nair was correct in clearing me for surgery, which he is.

They referred me to these 2 doctors, and when I called them, not one of them took my insurance!  So, I had to do A LOT of footwork, and finally found a Pulmonologist & Psychiatrist who will see me on the 17th & the 19th.  The 19th is a Thursday, and I'm going back to the transplant clinic on the very next day, Friday, so that I can FINALLY get listed!  But when I finally get listed, it's going to be with my biological MELD score of 6!!  Then, they take my case to the UNOS (United Netword of Organ Sharing), requesting the MELD increase, just like Mount Sinai did.  That'll take about 4 business days to do & once I'm listed with my MELD score of 22, that's when I'll be getting a call PRETTY QUICKLY.  It could be a day, it could be a month until I get that call I've waited so long for.  So, my surgery will probably take place in August.

Other than that, I've also had some tragic things happen.  My 7 tooth bridge has fallen out, along with 3 of the 4 teeth that were anchoring it, so I now have NO front teeth!  I went to the dentist yesterday, hoping that they'll just pull these 'teeth', that aren't even teeth, they're just roots of teeth, and the scheduled my appointment for the 18th, which is HORRIBLE because on the 18th at 2:30PM is when I have to see the psychiatrist!  The appointment for the extractions is at noon, but I can get there at 11:30AM, but still, it's going to be horrible to go to see the psychiatrist, who has the power to NOT grant me psych clearance, with a mouth full of bleeding gums!

I've told the dentist that if anyone cancels their appointment, to call me ASAP & I'll take their appointment.  I'm hoping that'll happen.  If not, then I'm going to call the psychiatrist and explain to them what's going on, so maybe they can see me on the 20th instead.  I highly doubt it, but it's worth a shot.  I'm not going to call them until Monday, however, because I'm hoping that I'll get an earlier appointment for the dentist.

FL Medicaid is SO different than NY Medicaid & it SUCKS!!  They barely pay for anything and they don't have many doctors that accept Medicaid, and worse still, is that I've got to pick an HMO.  I'm going to try to call the Medicaid office to try to keep my straight Medicaid.  However, I've already called the Medicaid Choice line and they said that I'm required to pick a plan, and since 2 of my doctors take a certain HMO, I might just go with that one.  However, it won't become active until August 1st, and the dentist that I'm seeing does NOT accept any HMO plans, so I'd like them to charge everything before the 1st, like the extractions and the bottom denture.

That's the other thing.  FL Medicaid doesn't require any authorization for a full denture, but they require an authorization for a partial denture, which takes 6-9 weeks!!  There's NO WAY that I'm going to wait that long with no front teeth, so I've opted to pay for the upper partial, which is $750.  Thankfully, my Mom & Sam are going to pay for it, so at least I won't have to worry about my teeth for a while.  And I can still get dental implants once I get my liver transplant and get settled back in NY.

So, that's pretty much what's been going on.  I'm pretty upset that it's taking so long to get listed, but that's the hardest part.  Once I'm listed, then things will happen very quickly, and I should be listed by the beginning to mid August.  It's taken a lot longer than I'd have thought it'd take, but I'm almost there!  So, I"m just hanging tough until then.  Till next time...

Things are in motion...dates are set...

I've finally gotten my appointment for the final, and most invasive, test that's required of me in order to get listed here in FL.  My colonoscopy is scheduled for June 29th, which is a Friday, so the following Monday, I'm going to call the Transplant Coordinator at Broward General Medical Center (BGMC) and an appointment will be made for me to see the surgeon that week.

The transplant surgeon is Dr. Selvaggi, who, to my relief, is an excellent surgeon.  He's actually the main surgeon for me, as they'll be 4 transplant surgeons working on me during the liver transplant.  Hopefully, I will get the call that I've waited 6 years for telling me to come in for surgery on the 3rd or 4th week of July.  If that happens, then I will be coming home in October.

I shouldn't even be thinking about when I'm going to get the call, because it can take longer.  I base this on the fact that a woman I've met here in FL had the same exact MELD score as I do, and she was called in 3 weeks after being listed for her surgery.  She's now 2 1/2 months post-transplant, and doing very well.  Her Dr. was Dr. Selvaggi & she asked me if I knew who my surgeon would be yet, and at the time, I did not.  She did tell me that she'd hope it's Dr. Selvaggi because he's the best.  I'm not so good when it comes to trusting Dr's, so I sure hope that he is the best.

On another note, my son, Jonah's, baseball team were playing in the Jr. World Series and he won!!  I'm so proud of him, and he's so proud of the gigantic trophy that all of his teammates got.  He's probably going to show it off to all of his classmates today!  It's news like this that really makes me think "These are moments that are worth living for!"  I felt so special when I found this out yesterday, that his team won the world series, but even more, I felt like it would be nothing short of criminal to miss out on these wonderful moments in his life.

I went to church this past Sunday, something that I haven't done in a very long time, and since it was Father's Day (by the way, Happy-belated Father's Day to all of the daddies out there!), and the Pastor said some very inspiring words.  It really touched me and I left mass feeling at peace with myself.  As I left mass, everyone was walking to their cars in the parking lot.  As I'm walking, I see a wad of bills wrapped in a red rubber band.  This woman behind me said "Oh, it's your lucky day", as if I was just going to pocket this money that didn't belong to me, after leaving mass feeling blessed & good about myself.  Instantly, I thought to myself 'This is a test and I'm not falling for it!'  So, I ran ahead and yelled to those getting into their cars "Did anyone drop money?"  People shook their heads no after checking their pockets, and then one woman said to her elderly father 'Dad?  Did you lose money?'  The old man checks his pockets in his blazer that was on his arm, and I could tell by the look on his face that he had lost money.  I asked him "Did you have your money in a rubber band?"  He said "It's in a red rubber band".  At this point, I handed him the wad of cash and told him that he should put it in a safer place.  His daughter thanked me, as did he, and I felt very good about what I'd done.  I felt like I did the right thing, and I know I did.  I spoke to my Mom about it that day and she said "You don't take what doesn't belong to you.  God was watching you and he's proud that you did the right thing."  I couldn't agree more!

I've decided that I'm going to attend mass every Sunday, since, coincidentally, there's a Catholic Church literally 3 buildings down from where I'm living at, so it's so close.  I may also go to confession, since it's been a very long time.  The priest said some very touching things, things that he's experienced in his life that are almost identical to what I've experienced.  He said that his father died when he was 14 years old, and the only sadness that he feels is the sadness that he didn't get to know him as an adult.  I wish I could say the same, but there's a lot of sadness that I feel about my father.  I'm sad because he died so young, sad because he never got to see me grow up, sad because he never got to meet my son and my father wanted a son more than anything.  I've got a lot of sadness when it comes to my father.  But, I've accepted this, and am moving on in the best way that I know how to.  For a very long time, the only way I dealt with his death, was to not deal with it & self-medicate.  Those days are long gone & I'm never looking back.  So, I've got my own coping skills, skills that everyone should get while growing up, but that wasn't the case with me.  No point in dwelling on the past, I've just got to look to the future.  And I've got a lot to look forward to!  Till next time...

Getting listed in FL...

I must admit that I was a little upset about the way things are unfolding here in FL.  There's many tests that I must get done in order to get listed here.  I really wish that I'd have known that fact prior to my arriving here & rearranging my entire life.  I could have gotten all of these tests done before I changed my address & moved out here.  I was expecting to come here & get listed ASAP.  However, that's just not the way things are turning out.

I must get a Colonoscopy, Mammogram, EKG, CT Scan, US-Liver Doppler (aka ultrasound) and blood work.  The most invasive test, by far, is the Colonoscopy.  I see no need to get that done, especially since I've had an Endoscopy done back in February of 2011.  However, if it was up to me, I'd choose to get none of these tests done & I'm not the doctor.

More red tape to go through and what's most shocking to me, is that this all seems just a little too familiar.  I'm used to all of these highly invasive tests, and having to 'jump through hoops' to achieve the desired goal.  So, I was waiting for an authorization for the CT Scan, which, fortunately, came in yesterday and I've now scheduled all of these tests.

I go for the CT Scan, EKG & Ultrasound on June 16th (just my luck, the day after Sam leaves), and the Mammogram on June 18th.  I was fortunate enough to find another Gastrointerologist who will see me a lot sooner than the GI Dr at the Transplant Clinic would.  I have an appointment on June 12th which is a consultation for the Colonoscopy, basically explaining to me what will happen (as if I don't already know, or if I really want to know), then scheduling the actual test to be done at the Outpatient Clinic of Broward General Medical Center.  The procedure should be done about 2-5 days after my consultation on the 12th, the GI Dr is aware that time is of the essence and it's crucial that this test get done ASAP.  The GI Dr that I was referred to from the Transplant Clinic, had the earliest appointment for a consultation on July 2nd!!  That's just completely unacceptable.  So, I took it upon myself to find another GI Dr that would do the Colonoscopy sooner, and was fortunate enough to have found one who, coincidentally, will do the procedure at the very same hospital that my transplant will be done at, Broward General Medical Center (BGMC).

Once these tests are completed, I will see the surgeon at BGMC and will be listed as of that day.  Once listed, all I have to do is wait for the phone call to come.  I spoke to a woman who's 2 months post-op and her MELD score was same as mine (22) and she was listed for 3 weeks and got the call that changed her life forever.  I can only hope that it takes a mere 3 weeks for me.

It feels surreal, like a goal that has never been attainable to me.  I think that reality of it all is sinking in and it envelops my every thought and action.  I just can't stand the waiting!  It's like the angel of death hanging over my head.  Then, I stop and think, "Do I even feel like I'm dying?", "Am I dying?  Or do I just think that I'm sick because a Dr told me that I am?"  All of these thoughts, and more, come to me.  I push them aside and try to stay focused to the desired goal.  But it's been so long, that I don't even remember what the 'desired goal' is anymore.  Do I really want to have this surgery?  Is the quality of life after transplant something that I can, and/or would want to live with for the rest of my life?  What do I have left to accomplish on this world? What do I have to be alive for?

I have my son, family and friends, and I owe it to way too many people to let them down.  But, I never asked for this.  It's so hard because it's out of my hands, beyond my capabilities of controlling.  I think it's just coming to the understanding and acceptance that there's some things in life that no mortal can control.  Once that's been accepted, I mean fully accepted, then these questions that I think about will not be thought about.  Am I even making sense?  I feel myself getting more dim as time goes by and that's when it hits me that something is terribly wrong.  I just keep myself busy and keep my mind as active as possible to avoid it.

On a brighter note, my boyfriend, Sam, is coming today and will be with me for a week.  It's very nice to have my friends, family & loved ones here with me.  I really underestimated how important it is to have family support.  I'm very grateful that I have it.  I miss my son the most, and he will be here in about 2-3 weeks (June 26th), and will stay with me for a few days.  He'll be spending his 11th birthday here, and he's got loads of gift suggestions and I want to fulfill every one of them!  So, till next time...