Please help SAVE MY LIFE!

November 25, 2012

on November 25, 2012



Just wanted to update you on that I made it through another ketamine coma.  However, what a day I had!  Like usual, it is always an adventure when I undergo one of these comas. 

I didn’t know really if I should have it done because like I said in the past blog, I didn’t feel very well and I was sick with a “bug!”  Besides my usual illness and not feeling well because of my usual complaints, I also was suffering from an additional “bug,” as I had severe stomach pains and a fever and was weaker than usual.  I think perhaps I might have had a stomach virus on top of everything else.  But, I knew how imperative the ketamine coma was because I was in so much pain, as I was literally climbing the walls with pain.  The disease has also been spreading like crazy and hopefully the ketamine coma would help “contain” the disease to a point. 

I am also leaving for Nebraska in 1 week and therefore, I was literally out of time because I couldn’t have it at a later date because first of all I was in way too much pain.  I don’t get any escape from the pain whatsoever and it has gotten to the point that even with maxing out on all the meds, the pain was still way too much to bear.  I really needed a relief from the pain… even if it was just for a day while I was under because the amount of ketamine that I need to actually help with the pain after I come out of the coma is way too great.  I am in too bad of shape and need an amount that is not FDA approved.  Therefore, the most that the ketamine really helps for is during the coma.  But even though it only helps for this short amount of time, I will take it because any relief is better than no relief since this is the worst pain imaginable and I never get a single second of rest from it.  So, I had to have the ketamine coma done now because if it wasn’t done today, I wouldn’t’ be able to have it done til after I came back from Nebraska, and I wouldn’t have made it that long. 

When I go to Nebraska, I will be undergoing lots of testing.  Even though the effects of the ketamine on the pain will be over with long before then, we still don’t know how long the actual effects of the ketamine will affect my body.  After all, when I come out of the coma, the ketamine affects my body even worse than it did before in the sense that it really stirs up my autonomic dysfunction.  My disease doesn’t like to be “messed” around with and therefore, whenever something or someone messes around with it… it “pays” me back big time.  As a result, I will pay for it big time afterwards, as my autonomic dysfunction will flare up big time afterwards.  I will get a whole array of sensations from cold sweats (even though I can’t sweat because of the autonomic dysfunction) to feeling prickly to having trouble breathing to many other things.  But, it all is worth it to have that relief during the day. 

In addition, we don’t want the ketamine to possibly “mask” anything that could be occurring in my body.  We want the doctors in Nebraska to get the FULL picture of what is happening with me and want the tests to show the actual picture of me because the doctors have to know the exact and appropriate way to treat me.  After all, I have tried all different types of treatments already and nothing has worked.  We are going to Nebraska for evaluation and workup for the transplant, as I need a multi-organ visceral transplant, which includes a stomach, small and large intestine, and pancreas.  Therefore, we aren’t talking about a  “minor” thing.  This is a very major workup because this transplant is very MAJOR.  It is very rare and VERY risky.  In fact, it runs the highest rate of rejection of all transplants.  Since it is so dangerous, rare, and risky, only 8 hospitals in the entire United States actually do this transplant.  Therefore, we can’t be playing around and getting “false” information.  You know? 

As I said before, Ketamine is an NMDA receptor, otherwise known as an inhibitor of N-methyl-D-aspartate (NMDA) receptors. These receptors permit the transfer of electrical signals between neurons in the brain and the spinal column. Studies support the idea that RSD results from a dynamic change in the physiology and structure of central pain neurons mediated by NMDA receptors. When these receptors malfunction, enzymatic and metabolic cascades occur in pain cells, and the degree of pain is magnified out of proportion.  As an NMDA antagonist, ketamine blocks central sensitization.  The theory is that the coma allows the constant throbbing pain connections from the body to the brain to reset, like a computer reboot. 

Therefore, we aren’t playing with an “easy” or “everyday” drug.  In fact, this drug is a drug that is not even really FDA approved.  It is even known as a “horse tranquilizer” or “Special K.” Due to the hallucinations, which may be caused by ketamine, it is not typically used as a primary anesthetic, although it is the anesthetic of choice when reliable ventilation equipment is not available.  It has many short and long-term effects and we can’t afford for them to play into a factor of the results of the testing as it could possibly “mask” or alter the results.  Therefore, we had to have the ketamine coma today since the trip is scheduled for next week in order to give my body time to go back to its “usual” state and so that the doctors can see how it actually is.  I can’t afford for the doctors to get a false sense of my body because I am in too grave of a state.  I am literally dying and deteriorating rapidly.  I am extremely fragile and the wrong move can literally “kill” me.  In fact, the doctors know how fragile I am and that is partially why they want to do so much testing on me.  They want to know me from head to toe before they even touch me because they know the slightest wrong move can literally “kill” me. 


So I really had no choice but to go for the coma today because like I said… I was in way too much pain and I had to go because Nebraska is scheduled for next week and I needed time for my body to go “back” to the way it usually I; I couldn’t afford for the ketamine to mask anything that it possibly would.  So, like always, dad took the day off and took me for my ketamine coma.  Even though the pain relief from the coma wouldn’t last after I awoke from the coma, at least I would finally get a relief from my suffering for the day.  I would finally have a day “free” from suffering and I would have a day of “rest” because this would be the only “sleep” that I get since I don’t sleep at night. The pain is way too much to bear at night and I can never get comfortable.  I can’t even sleep with a blanket, as the slightest touch literally sends me up the walls.

But like always, the ketamine coma is always an adventure.  At least when I go for the ketamine, the staff at the place is extremely nice and reassuring.  It is really is great that the staff is the way that they are because when you are going through something like this… a warm smile or the “niceness” that they show you really goes a long way.  They really treat us like “family!”  It really is nice to go there because they give us “first rate” treatment.  Even though the waiting room is usually crowded, they never make us wait.  They always take us right into the back and I always wonder what the other people in the waiting room are saying about that.  I know that if I was waiting all that time and someone came in and went right into the back before me, I know I would be mad and say something.  But, it is very nice that they take me right in back because I can’t really be around a lot of people since I suffer from an autoimmune disease and can’t really afford to be around a lot of people.  If I get sick, it could be really bad because I can’t fight it.  Everything is magnified for me and therefore, a simple cold is like getting the “flu” to me and it can easily put me in the hospital.  I have no defense mechanisms and therefore, I catch everything.  In addition, I appreciate being brought right into the room because I don’t have to wait long, as the doctors can get me ready to be put “under” right away instead of having to wait around.  Nothing is worse than waiting around for this because I get antsy. 

What an ordeal we had.  To begin with, the doctors had a hard time starting my IV.  I used to have such great veins.  Yet, they have since become so fragile.  The veins just kept blowing and infiltrating today.  I was in so much pain too while they were doing it as well.  As I am so hypersensitive, a simple needle stick is like someone sticking a “knife” into me.  It is excruciatingly painful.  Yet, after the IV was started, they did give me so lidocaine, which was supposed to “numb” the pain.  But, I was in too much pain and it barely did.

During the coma, my dad and the doctor had a very long talk.  I guess there isn’t anything much else to do when I am under.  I mean… since my dad and the doctor are there for many hours just watching me… they talk.  When I undergo a ketamine coma, the doctor won’t really take on any other patient because he has to be fully available for me in case something should happen.  So, I kinda have both their full attentions for the entire day. So, since they both really had nothing to do since I was “sleeping” as the ketamine was doing its “magic,” they were talking.

They spoke about many things, but one of the things they spoke about was of the upcoming trip to Nebraska.  The doctor feels that I am in too fragile of a state and not up to having the transplant.  He told my dad that if I go to Nebraska and have the transplant, I am going to die.  He literally said that I am “going to die if I go to Nebraska and have the transplant.” I can’t believe he said that because you don’t go and say that to my dad who is freaking out about the transplant as it is.  My dad is the type of person who listens to everything the doctors say because he would do everything and anything to get me well.  My dad would literally have me living in the hospital all the time because in his mind he thinks that nothing can happen to me in the hospital because the doctors wouldn’t let anything happen to me.  If the doctors say, “jump,” my dad will literally say “how high?”

I honestly couldn’t believe that the doctor was telling my dad that I was going to die if I went to Nebraska to have the transplant.  My dad said to the doctor that “the doctors in the Nebraska wouldn’t do the transplant if they thought I was too fragile” but the doctor then told my dad otherwise.  The doctor explained to my dad that when you are dealing with me, they will do it no matter what because there aren’t any really other options and they aren’t going to just “turn me away” and let me die and do nothing.  So now even though my dad was nervous before about going to Nebraska and having this major transplant, he is even more nervous now because of what this doctor said.  My dad knew that I was very fragile, but he truly believed that if the doctors thought in Nebraska that I wouldn’t make it through the transplant, they wouldn’t do it.  Now… he was being told otherwise.

Then, we had another complication because I needed to get injections as well during the time that I was under the coma.  I need to get injections into my knee and such, but as I said before, I am way too hypersensitive and therefore a simple needle stick is like someone sticking a knife in me.  Therefore, in order to make it less painful on me because it is too painful for me to bear them putting a needle especially into my leg, they can only do these injections while I am in the coma.  Yet, with everything going on today, the doc waited too long. 

When the doctor came into the room to do the injection and got everything all set and ready to do it, and my dad was like “I don’t think its a good idea… she is starting to wake up.”   The doctor had everything all prepared and ready to go and therefore, the doctor was like “don’t worry… it will be ok… she won’t feel or remember it. We will freeze the sites and stuff.”  Anyway… I was waking up like my dad was saying so When he was going to do it I opened my eyes momentarily because when you are coming out of the ketamine coma you come out in spurts and then go back and forth… but I was like “I Don’t think so!  You are not going to do that to me!”  The doc was freaked out because I opened my mouth just as he was about to do it. I was like “You are not going to be doing that unless you knock me back out!”  But since I was knocked out for a while already and my blood pressure and heart wasn’t so good, they said it would be too risky to put me under again so soon.  So… there went the injections.  The doctor couldn’t give it to me.  So… part of the reason I went for the coma… which was so I could get the injections…. I couldn’t do.

To make matters worse, I ended up spitting up all over my dad.  When the coma was all done and it was time to leave to go home, I had to depend on my dad to carry me.  I am always “too out of it” to walk and therefore, my dad becomes SUPERMAN and always carries me out and to the car.  He then carries me out of the car and into the house when we get home.  Thank goodness that I weigh so little because at least my dad is abele to carry me.  At least there is one good thing about weighing so little.  Anyway, I ended up spitting up all over my dad because I was so very sick.  My dad just happened to be wearing his new jacket too today.  He couldn’t believe that it was the very first time he was wearing it and I already spit up all over it.  I felt really bad when he told me about it afterwards. 

Well, that was my day.  Now I just have a bad bellyache and have to worry about the side effects of the coma, which among them are the strong hallucinations and nightmares.  The ketamine puts me into these nightmares that are so vivid that my parents literally have to wake me up out of because I can’t get myself out of them myself.  My mom literally has to wake me up all throughout the night so that I don’t spend so much time in the nightmares because they are so very vivid and scary.  That is one of the really big downsides of the ketamine.  Even though they try to give me something to minimize the effects of the ketamine, it isn’t 100% alleviated.  If they are this bad with the drugs that they give me to counteract the ketamine, I can only wonder what it would be like without the drugs.

My dad is really funny when I go for comas because he watches me so carefully.  HE knows when I “fade in and out.” He is always like “Fallon is on a trip.”  He is so funny. But, thank goodness that I have my dad around because I need him more than ever.  He is my “superman!” He literally has to carry me out of the place, put me in the car, and then carry me into the house because I am totally not “with it!” Without my dad… I definitely wouldn’t be able to do any of this and I definitely wouldn’t have made it this far. 

So… I guess I am going to go and rest.  It has been a long day.  Just wanted to update you on what happened today.  It is going to be a busy week because leaving Monday, December 3rd, for Nebraska.  Gosh… it is going to fly this week because whenever you don’t want something to happen… time always flies.  I am really going to miss my mom because like always, my mom will stay back.  I just hope that this trip isn’t going to be so bad because traveling is so “hard” on me. 

I also want to get stuff ready for the holidays this week because by the time I get back, the holidays will be here already.  I really want to get something special for my parents because they are two of the most special people in my life.  They have done so much for me throughout my life and I want to really make their holidays special.  Plus, with the doctors saying that unless a “miracle” happens I won’t be here next holiday season, I really want this holiday season to be special.  But… with money being so tight as well, it is kinda going to be difficult.  I just wish I knew what that perfect gift would be other than “getting well.”  They have given up so much for me such as not being able to go on vacation, going out to eat, having to work so much, etc.  They really have given up so much so that I can live and I can’t ever thank them enough.

My family has had such a difficult life.  Even though they don’t have my illness, they are still affected, as there is an overshadowing threat the outcome of this illness will be my death. This is a tremendous additional burden, which intensifies the challenges of everyday life for the family, because they periodically have to deal with grief and great uncertainty. My parents have always shown how strong they are even though they may fear at times hopelessness and fear of me dying. Being a parent with an ill child is heart wrenching, and I know how much it pains them that I am sick.

I am really going to take full advantage of this holiday season.  I hope that they have lots of decorations in Nebraska because I love looking at all the decorations on the houses.  It is the best time of the year.  It is amazing how neighbors get so competitive as to who has the BEST house in looks.  But, even though they become competitive, it is better for the public and neighborhood because the houses become extravagant to see.  Since I won’t really be around to appreciate the holiday season in NY, I hope that they have lots of houses decked out in Nebraska so that I can still see the extravagance.  But we all know that no one does nothing as good as New York.  New York has the BEST of everything.

As for me, I don’t really have much that I want for the holidays.  I really want to get well and therefore, what I want is that “miracle” of getting well.  But, I am at least hoping that I get some funds so that I can continue treatment or at least hoping that some of the letters that I wrote to the media will be answered and as a result, they will feature my story so awareness can be brought to my situation.  I am hoping I might have better luck since it is holiday time!   But… like everything else… I don’t expect much and this way I don’t get hurt. Since I have dreams of having a family of my own and leading a productive life, I refuse to give up hope that maybe my holiday wishes will come true.  

Well… talk to you soon. 

– Fallon


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