Please help SAVE MY LIFE!

September 19, 2012

on September 20, 2012



Just wanted to update because it is getting close to leaving for California and so much has happened since the last time I posted.  So… I wanted to keep you abreast on all that has been happening, so I decided to write now so that it all doesn’t build up into one GIANT post.  I also wanted to share that I ended up saving a person’s life today.  So, just when I thought that I was “useless,” I ended up saving a lady’s life today.  I couldn’t believe what I did.  I just happened to be in the right place at the right time. 

I guess I should begin with the news that I saved a lady’s life because that is not an everyday occurrence.  I really still can’t believe all that has happened.  I just happened to be at the right place at the right time.  Since I am leaving in such a few days for California and will not be able to eat ever again (if all goes well with the tubes and the surgeries in California), I wanted to get my ice cream today.  I love my ice cream and that is definitely something that I am going to miss when I can’t eat anymore.

Ever since I got sick, I have been getting weird visions and feelings.  It is something that only the “dying” gets.  It is really hard to understand unless you are going through it.  Well, I kept getting a feeling that something was going to happen in the parking lot exit of the place that I got my ice-cream from.  I kept feeling that something was going to happen and kept saying how dangerous it is here and such. But, I never really thought my feeling would come true.  Then again, whenever I have these feelings, they do 99% always come true, so it shouldn’t surprise me.  But still… I never expect that it will happen still.

Anyway, I was going out of the parking lot and was the only one around.  I wasn’t really even supposed to be out because I wasn’t feeling well.  Well, a lady about 68 years old was walking on the sidewalk and crossing the driveway of the parking lot to go to French class.  All of a sudden this huge Dodge Ram came and hit her.  I saw the truck come and I was like “he is going to hit her.”  He wasn’t even supposed to be making a turn to enter the parking lot at that area, as it is only the “exit.”  But, he entered it anyway.  I saw him coming and such even though he wasn’t making the turn completely yet because I see things before they happen.  It is really weird. 

Before I could get out of the car to say something to the lady to get her attention, he ended up hitting her.  My hindsight was right all this time.  The feeling that I had all week that something was going to happen was right and the feeling today that he was going to turn and hit her even before he did was right too.  He hit her, knocked her down, and she went underneath the wheel well.  However, not only did he hit her and knock her down, but he gunned the car as soon as he hit her and basically dragged her like 20 feet.  During this time, she was stuck underneath the wheel well.  If he was going 20 mph with entering the parking lot, he then went close to 40 mph once he made contact with her.

 I couldn’t believe it.  I started honking immediately after he hit her.  He dragged her 20 feet and all I could do was stare with my mouth agape.  I thought for sure that she was dead.  She wasn’t even moving.  She was knocked unconscious.  However, luckily there was a cop across the street pushing another car that was immobile.   So when this happened, he came running and called for ambulances and emergency vehicles immediately.  Everyone came ended up coming down from policemen to firefighters to EMT to rescue workers to helicopters to more.  It was a real ruckus.

What did shock me though was that the officer even attend to her.  The guy that was driving the vehicle came out screaming and he went to him.  I was the one that went over to the woman.  I was so shocked that the officer didn’t attend to the woman and check her vitals and everything, but he went and dealt with the man.  I think the man worked for the town and it was a TOWN OF HEMPSTEAD vehicle.  But, I am not completely sure.

I rushed right over to the lady.  She regained consciousness and told her she will be ok. I talked to her and tried to keep her calm.  She knew the day, her name, her age, where she was going, etc.  But, she was really pinned.  She wasn’t in pain at that point, but I think it was because she was in “shock” and because of the pressure of the truck.  She really lucked out because it could have been A LOT worse.  She had lacerations on her head, but they were minor.  I think she had a pelvis fracture. I am pretty sure that she probably has internal bleeding too because of the weight of the truck. But, at least she was able to talk to me.  Another person came over to help me and when she did, I asked the officer for gloves.  I stayed with her and everything until the paramedics, firefighters, and other rescue crewmembers arrived.  However, I didn’t want to remain in the way, so when they came, I left the other person with her since I couldn’t really move around because of my illness.  They had to literally hoist the vehicle off of her and then she was transported to the hospital by helicopter.

Since I was the only one around, I had to stay with the officers and detectives to talk to them and give a statement and everything.  I never saw anything like that.  It was a real mess. The street closed down and it literally took over an hour to get down the street because of the traffic.  The detectives and policemen were extremely nice to me. They all asked me if I wanted to sit in their cars and everything because they saw the condition that I was in (not the healthiest). 

The cops asked me so many questions and I tried to remember to the best that I could the answers.  However, it is amazing how much you don’t really pay attention to when something happens.  They wanted to know such specific info like which way she was walking, the type of turn he made (wide or narrow), did he have his blinkers on, what did his eyes look like, etc.  I gave them as much detail as I could, but I couldn’t remember everything.  

Gosh… when something happens, so many people come to see and watch.  People from everywhere came out to see what happened. Everyone just wanted to know what happened.  Of course since I was the only one around and saw everything, all questions were directed towards me.  I can’t believe how “nosy” people could be as there were even people snapping pictures. One person kept snapping my picture for over 20 minutes.  The cop told him to “stop snapping” but he just moved across the street.  The cops were trying to keep me calm after all that I did and were talking to me.  It did get to the point that with the guy that was snapping pictures, I said to the cop, “I am going to whack that man.” The cop told me “Go ahead, I didn’t see anything.”  That guy was really pissing me off.  I wonder what he is going to do with all the pictures that he took of me. 

Anyway, I really hope that the lady is going to be ok. She was such a sweet lady too.  I tried my best to do everything that I could. Even when she was pinned under the car and everything, she wouldn’t let go of her pocketbook.  I told her that she could let go of it and I promise that she will get it back.  To think…  all I wanted was to go out and have my ice cream because I only have a few more days to enjoy food.  Look what I got myself into.  I did make a lot of “friends” though, as I was well taken care of by the cops.  I am just so glad that I was there to help. I am just still freakin out to be honest with you because of those visions and feelings that I get.  I can’t believe that every time I get one… 99% of the time they come true.

I can’t believe how close it is getting.  It is going to be here in no time. Three more days and I am out of here.  Sunday is the big day that my dad and I leave for California.  I am so very nervous. I am not only nervous about going, but nervous that I am not going to make it to California too even though it is only a few days away.  I desperately need to get to California because I am going for lots of surgeries. I am rapidly deteriorating and I don’t have much time left.

So many things can happen in 3 days that can prohibit me from going to California.  I am really hoping that I am going to make it.  But, we will see.  The doctors are hoping that I will make it as well because I am so very sick, so everyone has their fingers crossed. With everything happening lately, I should really be in the hospital as we speak.  However, the hospital here is not really situated to take care of me or able to really “help” me.  The BEST place for me is California and therefore, we are hoping that I will just make it there.  If I would go to the hospital here in New York, I would never make it to California, and California is the place where my “team” is located and where the doctors are most knowledgeable about what is going on with me.  I am not going to admit that they are 100% knowledgeable and will definitely be able to help me, but they are doing stuff there that they are not doing anywhere else. For example, they have treatment of snail venom for my neurological disease and autonomic disease that they pioneered and cannot be found anywhere else.

California is also the best place for my gastroparesis.  Only 8 hospitals in the United States are really situated for a small bowel transplant, and it is even less for a “multi-organ visceral transplant.” Stanford Medical Center, which is the hospital that I go to, is one of those hospitals that specialize in those transplants that I need, as I need a new stomach, small intestine, large intestine, and pancreas.  I also recently found out that a new esophagus might be needed, which really complicates things.  This is a very dangerous, risky, radical transplant and it runs the highest risk of rejection of all transplants.  You really have to have the BEST doctors in the field in order to undergo a transplant like this and therefore, California is where all the BEST doctors have culminated.

Doctors from all over the country, from top hospitals, have traveled and relocated to Stanford Hospital and therefore, it is where I can receive top-notch treatment.  I really need to be there because I can get treatment that I don’t receive no place else since all the top-notch doctors are there.  Not only are they extremely knowledgeable, but their bedside manners are unmatchable.  They really have a “team” approach and work together.  It is amazing how much they work together and try to “help” the patient.  They are in it for the patient, unlike the doctors who are only in it for themselves. I have never seen anything like it before.  The only thing that stinks is that they are located across the country.

Anyway, I am just hoping to get to California because like I said before, so much has been happening.  First of all, I have really been bleeding.  We don’t know where the blood is coming from, but we know that I am bleeding from somewhere because I have had blood in my stool.  I have had blood in my stool for a while, but it is getting a lot worse.  The doctors in the past in other hospitals besides California have tried to figure out where the bleeding was coming from and the cause, but they have unable to do so.  They have wanted to do a colonoscopy to see what was occurring in the intestines, but even that was a fruitless attempt because I was unable to prepare for it.

In order to have a colonoscopy, you have to prepare for it and be basically completely “cleaned out” by using laxatives.  People generally take pills or drink a gallon of a mixture called GO LITELY. However, since I suffer from severe gastroparesis and unable to swallow anything, the doctors placed a NG tube in me to help “prep” me for the procedure.  Since my GI tract is completely “dead” and nothing really passes through, the doctor placed a tube in me that went directly into my stomach to help put the mixture in me so that I wouldn’t have to swallow it.  However, when the doctors put the mixture into the tube, they only had to remove the tube because it failed.  They were only able to put in less than a quarter of a liter because the tube started to back up.  My GI tract is too bad and my stomach is too “dead” that nothing was passing through whatsoever.  Therefore, the tube was completely backing up and the mixture (Go Litely) was coming back out the side that they were putting into the tube.  So, since they couldn’t put any of the mixture into the tube anymore because it was “backing up,” the doctors had no other choice but to remove the tube.  It was a failed attempt to prep for the colonoscopy and therefore, the colonoscopy could not be performed.  Even with the amount that was given to me in the tube, it still should have made me go to the bathroom, even if it is was a little bit.  However, my GI tract is too bad that I didn’t go at all.

So, the doctors were unable to do the colonoscopy to find out where the bleeding was located.  The doctors have also tried in the past to put a camera in me by having me “swallow” the camera.  It came in a pill form, but that too was a failed attempt. Nothing passes through my stomach and therefore, I only threw up the camera a few hours afterwards.  I literally throw up everything because nothing passes through my stomach.  I can literally take pills in the morning and then when I throw up over 12 hours later, I can vomit up my pills and bring them to my dad in a cup.  They are all whole and not dissolved.  You would think especially after that much time that they would be dissolved or something, but they aren’t.  Even with the pills that do dissolve, they don’t even dissolve in the place that they are supposed to, which is in the stomach.  They end up dissolving in the esophagus and therefore, the doctors have to be extremely careful when giving me medications because it can easily ulcerate my esophagus since they dissolve there instead. There have been so many times that I have needed emergency endoscopies to remove pills because they became stuck in my esophagus and were causing problems.  After all, we can’t afford for my esophagus to ulcerate.

Therefore, when I go to California, not only will I be having other surgeries, but one of the surgeries that I will be having will be surgically placing the camera into my small intestines.  This way they will find out exactly what is going on because I am bleeding worse than ever.   They can’t find out what is happening any other way, so this way it will bypass my stomach and they can be assured that it will be put in the place that they need it to be. 

I really have been bleeding a lot more than usual.  So, the doctors are really getting worried.  We have no idea where it is coming from.  So, hopefully I will make it to California and they will be able to find out where it is coming from.  I have been so very thirsty as well lately.  We know I don’t absorb because of the severe gastroparesis, but we are thinking that the bleeding is possibly making things worse. From the severe gastroparesis and malabsorption, I really am dehydrated.  So, I really can’t afford to lose even more hydration because of the bleeding.  Things just keep getting worse and worse.

Speaking about bleeding, it also turns out that I have bleeding in my ears.  We don’t know why there is bleeding in my ears, but I now have bleeding in my right ear.  I went to my internist today and he confirmed that there was indeed blood in there, especially in the ear canal.  There was also a lot of congestion as well.  We don’t know what to make of this, but this is not good.  Not only in general is it not a good thing that I am bleeding, but it can really complicate things with going to California as you aren’t supposed to fly with ear problems and it isn’t a “short” flight either.  The flight to California will be easily 8 hours long and it will be up and down because we have stopovers.  So, it is really going to be a problem.

The doctors are really worried about the bleeding in my ear and congestion not just because they don’t know why there is the bleeding, but because of the “flying” to California.  They have me seeing an ENT doctor tomorrow because something has to be done because it can cause a great big problem if it is not taken care of.  It cannot only cause further problems if not treated, but it can cause a lot of pain on the plane.  I am in so much pain as it is when I am on the plane that they have to literally overmedicate me and knock me out in order to get me there, I don’t need something else occurring.  So…. we will see what will happen tomorrow when we go to the ENT doc tomorrow.  All I know is that he better have some “magic” up his sleeve because I leave in such a short amount of time.  I need a quick “fix!”

I also have recently gone to the cardiologist and had an echo because my heart isn’t doing too well.  I am still awaiting the results, but I should have them back tomorrow.  I am really having heart problems and trouble breathing lately.  My organs are failing, my heart is having trouble beating, I am having trouble breathing, and the doctors are afraid that I am going to have a life-threatening fracture on my spine because of the Gastroparesis.  Due to the Gastroparesis, I am getting so much gas/air buildup in me.  There is so much in me that it is putting huge amount of pressure on all my organs, spine, and diaphragm.  As a result, it is causing organ failure and difficulty breathing.  In addition, my bones are paper-thin and I already suffer from dextroscoliosis.  They are so worried that pressure from the gas/air will collapse the vertebral bodies of the spine because of how weak they are.  I really need someone to “pop” me.  It is so dangerous because it is twisting my colon too and once that twists, I am in HUGE trouble because I can easily die. I need to have a rectal tube inserted to remove the pressure and air, but that is only a temporary fix. It will be back in no time.  So, something really needs to be done and done quickly because of the gastroparesis. 

So, tomorrow will be a big day because I will not only be seeing the doctor for my ear, but I will be talking to the cardiologist and getting back the results to my heart.  I really hope that I get good results because as of the last ECHO, my heart was really in distress.  I was suffering from pericardial effusion, ascites (is an accumulation of fluid in the peritoneal cavity), and other stuff.  Never a dull moment. 

I am really deteriorating and I am seriously going to die soon if something isn’t done fast.  The doctors already said that if I was a “male,” would sure have been dead already.  He said that a male would never be able to live at the BMI level that I am, as males can’t live below 13 under any circumstances.  Females can live for a little longer, as they can live til 12.  I am at a level of 12.2, so I am borderline death.  So… I really need something to be done and done quickly.  Plus, I am really starting to show all the “effects” that my illness has been doing to me all these years.

I have really been fortunate (f you want to call it that) because I was able to conceal being sick for a long time.  Even though I was suffering with this life-threatening disease, I never really “showed” it and people never really knew that I was suffering with this condition.  People just thought that I was extremely thin because I always had a good attitude and I never showed it.  I was always able to conceal everything that was happening.  However, the diseases have gotten so badly that I can no longer do that. People even comment on a daily basis of how “bad” I look and how “worried” they are of me.  I am in so much pain and I am getting symptoms that I never got before.

I was always able to conceal all that was happening to me.  However, the pain and suffering lately has gone way out of control.  I am getting too many new pains and I can’t tolerate it anymore. I can barely even get off the couch nowadays.  Even though I was so sick before, I did try to be as “active” as possible.  However, it has gotten to the point that I can’t even move.  It is complete agony no matter what I do.  Even getting up and down off the couch is too much for me to bear.  My legs feel like they can’t even support me and I keep getting very dizzy and such.  You know when you over exercise and your muscles are all shaky from being overused? That is how I feel.  

The doctors say that even though I was able to conceal all that was happening in the past and even though I was so “sick” for so long and my body was able to handle it for such a long time, it doesn’t mean that my body wasn’t suffering in the inside it wasn’t physically suffering in the inside either with damage.  My body has been undergoing all this physical damage all throughout the years even though I have been able to conceal it and such.  So, it is at the point where this “damage” can’t be concealed anymore. My body just can’t do it anymore.  I need desperate help or else I am going to die.  My body just can’t do it anymore. 

So, it is imperative that something be done and done fast.  I have had countless procedures and surgeries, but nothing has worked.  We have even exhausted all the medications out there and even tried medication that I get out-of-the country because it is not FDA approved, but nothing still has worked to help me get better.  I am just getting worse and worse.  It is at the point that not only do I have the neurological disease and autonomic dysfunction that is spreading like a wildflower and affecting everything throughout my body because it affects everything and anything on the nervous system, but I am suffering from severe gastroparesis.  I suffer from severe paralysis of the stomach, small intestine, and large intestine.  They are essentially “dead,” as there are no contractions of them whatsoever.  The sphincters of them are literally wide open and it looks like I was given Botox. Yet, nothing can pass through because there are no contractions because the organs are so “paralyzed” and “dead.”  My esophagus is even giving problems, as it is giving me severe swallowing difficulties.  I can no longer really swallow and it is having dysphagia as well.  As a result, it has led to aspirations into my lungs and has caused other severe life threatening problems like organ failure too.  I am also life-threatening thin and malnourished because I can’t absorb, as I barely weigh 70 pounds.

Although I am awaiting a transplant, we are trying to “buy” time because I am definitely running out of time.  So many people die waiting for a transplant because of the time that they have to spend “waiting” for a transplant. As of now, I really don’t have time to do this “waiting.”  In addition, the transplant is extremely risky and dangerous.  It runs the highest rejection of all transplants.  Since I am so low in weight and malnourished, I am not even the strongest person to undergo surgery.  I really need to gain some weight so that I can be stronger.  I really need to regain some of my strength, especially if I am to undergo a huge transplant like this.  I am going to need all the strength that I have if I am going to survive the transplant because the survival rate of this transplant is not good. 

With just small intestine transplant, the survival rate after 5 years is 60%. I need a whole system, so the survival rate is less.  Even with just the transplant alone, there is not one transplant that happens that doesn’t come with complications.  Everyone that has this transplant undergoes complications.  So, I need to be strong enough so that I can overcome it.  After all, 20% end up with major complications and may not even survive the surgery.  I don’t want to be one of those statistics.

In a way to make me stronger for the transplant and in a way to “buy” me time because if something isn’t done, I am going to end up dying, I am headed to California so that I can have multiple surgeries next week. They are going to be putting in tubes in me that will bypass my entire GI system and go into the small intestine directly.  They know that the small intestine is “dead” as well, but they are hoping that if they go low enough into the small intestine, there just might be a viable part.  So, the tube will bypass the esophagus, stomach, and upper portion of the intestines and enter directly into the lower portion of the small intestine.  This surgery will take place on Monday. 

If the surgery is successful and the tubes can be tolerated, I will then have a second surgery on Thursday to make the tubes more permanent and have them coming out of abdomen. The doctors don’t want to make the tubes completely permanent because they don’t know if the tubes are going to work or if I am going to be able to tolerate it.  I have less than a 20% chance of this happening.  Due to my neurological and autonomic dysfunction, I have trouble having anything “foreign” in my body.  Even when I have IV in me, it doesn’t come without extreme pain.  They can’t usually give me IV fluid without knocking me out because I am so extremely hypersensitive.  I am in so much pain because I am so hypersensitive and they are fearful that I will be in so much pain from the tubes because of the sensitivity too.  In addition, usually anything “foreign” stirs up the autonomic dysfunction as well. If that occurs, I have difficulty breathing, I become in more pain, I get extremely hot and cannot sweat because of the autonomic dysfunction, etc.  It is simply horrible.

I am in so much pain as it is and I can’t tolerate any more pain. The amount of pain that I am in is astronomical as it is.  Doctors say that if “Hell was a medical condition, it would be known as my disease.”  My neurological disease is ranked as the most painful thing that can occur.  It is more painful than exist.  RSD ranks #1 on the McGill Pain Scale, which means it is the most painful disease that exists.  As you can see on the scale, Arthritis pain is ranked about a 18, Cancer pain is 24, Chronic Back Pain a 26, and then my illness is ranked a whopping 42! The only thing close to RSD pain is the amputation of a finger and that is quick.  My disease is constant, as I don’t get a break from it. I suffer with it 24 hours a day, 7 days a week.  So, I can’t afford for it to be made worse or for it to be exacerbated. In addition, any traumatic event or exacerbation can cause it to “spread.”  It is already spreading like a wildflower and therefore, I can’t afford for it to spread even more.  Basically we are playing with fire.  So, if it means starting this illness of even more and exacerbating it, the doctors will have to remove the tubes as well.

The tubes will also have to be removed if they fail to work because the intestines are too “dead.”  They are hoping to find a small piece in the lower intestine, but they are not even sure that will be possible.  Since I have no contractions, it is very possible that even though they are going into the lower intestine, whatever enters the intestine at that portion will still collect there and form a “bag” there.  In the upper portion of the intestine, the food had no place to go and therefore, it always collected there with no place to go.  It formed a “bag” there and abdomen would become extremely distended. I would even look pregnant.  So, if this would occur even with the tubes, it will have to be removed as well.

If the tubes do work, I will never be able to eat again.  That is one thing that is really bothering me.  To think about never eating again and only being 30 years old, it really bothers me.  I mean… eating is such a social issue that people love to do.  So many people go out to eat with friends and family to talk and such.  But, I know I wouldn’t feel comfortable sitting around and just “watching” other people eat and I am sure that other people wouldn’t feel comfortable either having me “watch” them either.  In addition, I would constantly feel hungry despite being fed minimally through the tube.  Even though I would be “fed” through the tube, I won’t feel full because being “full” entails feeling food in your stomach and in your mouth so it registers in your brain.  Since I won’t have this anymore, I will always be hungry and my stomach will always be rumbling.  I don’t know how I am going to manage.

So, I have been trying to enjoy as much food as I can in the last couple of days before surgery.  I already told my mom that Saturday night, which is the night before I leave for California, all I want for dinner is mounds and mounds of ice cream.  I love my ice cream and I am surely going to miss it.

So, I have been spending my last few days trying to enjoy whatever food I want to have before I can’t have it anymore.  I love pumpkin, so I went to Dunkin Donuts yesterday and had a whole “pumpkin” fix.  I really went PUMPKIN overboard at Dunkin Donuts… pumpkin muffin, pumpkin cream cheese, and pumpkin coffee to wash it down. Would have gotten a pumpkin donut too if they had that, but I had to settle on an Apple Orchard donut.  However, when I got home, I realized they messed up on the cream cheese.  They ended up giving me Jalapeno cream cheese instead.  So, I was kinda annoyed.  But… Dunkin Donuts definitely has the BEST pumpkin muffins in the world.

Well, I am headed to California on Sunday. I will be undergoing the surgeries for the tubes, the surgery for the camera to be put into my small intestine and hopefully be given the snail venom, which they pioneered.  Although they would really like to put the snail venom in a pump, I am too small for one, as there is no room for one in my body.  They thought about putting it in my toosh, but there isn’t even enough room and padding there.  So, they are just going to put it in my spine (the venom), and then when I gain weight and room is made, I will have the pump implanted. 

I really hope that I can make it to California.  I just gotta hang in there 3 more days.  But, I am sure that since I don’t want it to come, it will come in a blink of an eye because whenever you don’t want something to come, it comes so quickly.  Isn’t it amazing how that happens.  It is only the stuff that you want to come so quickly that doesn’t.  However,  I do find it awesome that I am going to be in the same state as the EMMY awards this year. Even though I of course won’t be in Los Angeles, I think it is still awesome that I will be in California when they are being televised.

I am still having problems with the insurance company in regards to covering me with the transplant in California.  They will only cover me if I have it in Nebraska or Indiana, and both places aren’t really the best places to have it.  If I have it in Nebraska, they don’t do multi-organ transplants.  They only do small bowel transplants.  Indiana only started doing multi-organ visceral transplants since January, so they only did 1 or 2 since.  This is such a risky operation that I don’t want to be the guinea pig for this operation.  I really need to be in California because they did this operation before and my entire team is there.  Like I said before, they are the only place also that is equipped to handle my neurological disease as well.  So, I really need to go there.

We have made an appeal to the insurance company, but I doubt they will allow me to have it in California.  I did speak to the transplant nurse from the insurance company today because I got the approval for Nebraska and such, but when I explained my case to her saying how detrimental it is that I have it in California and how I can’t have it in Nebraska and Indiana, she said that I have a very valid case and that I really do in fact need to have it in California.  However, she is just a “nurse,” so essentially… she has no say.  She told me that unfortunately my insurance company will only approve 2 centers.  I don’t know what is going to happen.

Even worse case scenario and I end up being the guinea pig, I still need plenty of money in order to have this operation.  Even with the insurance covering it, I still have plenty of money that I need to fundraise because the insurance is not going to pay for everything.  They will pay for the multi million-dollar operation, but I will still have a deductible.  I will have to still pay for the living expenses because I will have to remain out there for 3-4 months afterwards, traveling expenses, appointments, medications, etc. 

We desperately need help because the anti-rejection meds that are required to take after the transplant that are needed in order to survive are not even covered by the insurance and will easily cost me $1000 per month alone.  That is not even including all the other medications that I will need that are not covered by the insurance or the copayments that we still pay.  After all, our copayments alone for the year (and that is with insurance paying) usually total up to over $25,000.  Also, I won’t be able to fly to the transplant center commercially when it is time for the transplant.  They won’t accept that at all.  I will need to fly PRIVATELY and therefore, it will be additional money.  The cost of a private plane is like $20,000.  I don’t know how we are ever going to afford this.

So…. even if the insurance should cover the actual operation, there are just so many other costs that I will still have to pay.  So… even if the insurance does cover the actual operation, I will still need over at least $100,000 in order to have the operation.  I don’t know how on earth we are going to pay for this, especially when there aren’t a lot of donations coming in.  Don’t get me wrong… I am extremely grateful for all the donations that I did receive, but they are not nearly enough to what I need.  I really need so much more because the amount that I have already made is like “peanuts!” 

I have tried so much to find different ways of fundraising, but nothing works.  If anything, it will work initially and then quickly die out.  I have tried websites, writing to the media, flyers, etc.  Yet, they really haven’t produced much.  I really wish I could get on the news or in the media because the media is so powerful.  I don’t understand how other people get on the news and TV talk shows and such and then I can’t.  I guess it is like it always goes… “It is not what you know, it is who you know.” 

Well… Gonna go and rest. Had a really big day today and need to rest.  Like always, please say a prayer for me.  I really need all the “help” that I can get.  If you can, please spread the word of my site so hopefully there can be more awareness of my condition and I can receive further help.

Love always,



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