As we are getting closer and closer to leaving to the Mayo Clinic, I wanted to write and update you on the very latest. This way you will know exactly what is going on. The Mayo is getting to be so very close. However, even though it is only 3 days away, as we leave on Monday, I am not counting on going and being able to get there until I am physically there because anything can happen in the next few days especially with me. My health isn’t really doing too great and my bloods aren’t really doing well either. . I knew that something was definitely up because my body was having more spasms and cramps than ever. So all bets are off until I get there. I don’t want to count my chickens before they hatch.
Before I begin, I want to just let you know something BIG and some good news. One of my favorite authors got whim of my illness through a friend and she actually wrote me a personal email and is trying to bring attention to my cause. I honestly couldn’t believe it when it happened and I still can’t. She is one of my favorite authors of all times and I can’t believe that she actually ‘contacted’ me. She posted something on her FACEBOOK page to help me out as well as tweeted about me too. Perhaps even though I can’t get the media’s attention because it ‘isn’t what you know it is who you know,’ maybe this will help a lot too. If you want to check it out or read any of her books, her name is Jodie Picoult. She is one amazing author and has written books that have went on to become great movies such as “My Sister’s Keeper!” In addition, another one of her fans started a hashtag for me on twitter @helpFallon.
We are supposed to be leaving Monday for Minnesota because we are going to the Mayo Clinic. However, I am not doing too well and to be honest… I really belong in a hospital. I really need to seek medical attention more than ever because not only am I not feeling well and my organs have been shutting down and such, but my bloods (which have been low already) have fallen even more and other things are now going wrong in addition to everything that was happening before. I am also having a really hard time eating anything at all, as even ice pops are getting unbearable to get down. Even taking the pills that I need to take to survive are impossible to take because I can’t tolerate the carbonated drinks or slushies that I make to swallow them. Forget about going to the bathroom also because even that has become basically an impossible feat. My body is just deteriorating and to be honest, I don’t know how much more it can take.
We are really scared because my heart bloods were dangerously low before and have fallen even lower. They are really in a range where cardiac arrest is so very possible. Plus, other levels are worsening including the carbon dioxide level, the brain tumor level, and amylase level. The doctors are worried because I have been having trouble breathing and now with a high carbon dioxide level, it further shows that I am not breathing fast enough to support the functions of the body. High levels of carbon dioxide only compounds the problems that I am already suffering from the Reflex Sympathetic Dystrophy and Autonomic because it can cause flushed skin, increased blood pressure, muscle twitches, reduced brain and nerve function, headaches, confusion and lethargy. It is important to fix the carbon dioxide level because it can also further lead to damage to internal organs such as the brain.
I am really just a disaster and honestly should be in the hospital. However, the doctors are trying to hold out as long as possible because if I were to go into the hospital now (even though it probably is the best thing), it would mean that I won’t be able to go to the Mayo Clinic on Monday, which is way too important to miss out on. We can’t afford to miss out on the Mayo because that is something that we have waited so long for and hopefully will make a huge difference. After all, we have traveled across the country and there really isn’t many doctors to help me nor is there really any potential treatment to help ‘save’ my life. We are really hoping that great things are going to happen at the Mayo Clinic because it is supposed to be one of the top hospitals in the country and great things happen there. They only take on the rarest and severest cases. They only take on the cases that can’t be helped elsewhere. Usually the wait is like months to get an appointment even, and to get an appointment earlier… you have to be really gravely ill. I have been able to get an appointment within a month or so, so it shows how ill I am that they have given me priority when the waiting list to get an appointment is so very long. I don’t want to do anything to jeopardize this trip because great things are happening at this hospital.
Not only is this one of the top hospitals in the country and have some of the top doctors in the country, but it is also a research hospital and have research going on that is not being done anywhere else in the United States. They discover things there that no one else knows of. Mayo Clinic is a nonprofit worldwide leader in medical care, research and education for people from all walks of life. Doctors from every medical specialty work together to care for patients, joined by common systems and a philosophy of “the needs of the patient come first.” They just don’t have technologically advanced medicine, but they have a caring attitude of the doctors. Mayo Clinic’s multidisciplinary research teams translate new discoveries rapidly to improve the prevention and treatment of disease and injury.
They have things going on at the Mayo Clinic that no one else has heard of. I am really hoping that will be able to help me. In fact, it was them that we learned about one of the conditions that I am suffering from. I had a very high level of Eosinophils and the doctors couldn’t figure out what it was due to. Well, the Mayo Clinic researchers were among the first in the United States to recognize Eosinophilic Esophagitis as a new disease. Mayo doctors have extensive expertise and experience treating this condition and other conditions of the esophagus and are actively involved in research on new therapies for eosinophilic esophagitis. This ongoing research means that in addition to standard eosinophilic esophagitis therapy, you may also have access to experimental treatments not available elsewhere. Not only that, but they said that this condition contributes to ‘dysphagia’ by secreting compounds that make the esophageal lining sticky or by making the esophagus stiff and less effective in propelling food downward, thus disrupting the easy passage of food. When they explained the feeling that patients were feeling, it was the exact feeling that I was feeling. It took the Mayo Clinic to figure out what happening with me because no one else could.
So I am really hoping that I will make it there before anything further happens. It is going to be a long trip for me though, but you gotta do what you gotta do. I just hope my body holds up because all this traveling really makes my disease worse. I will be traveling basically the entire day. Thank goodness though that I checked the tickets this past weekend because I realized that I had booked the tickets to the wrong airport. Can you imagine if I didn’t check the tickets and ended up getting on the plane and ended up in the wrong place because I ended up booking the plane tickets for Rochester, New York instead of Rochester, Minnesota? But thank goodness I caught it in time. The only bad part was that even after I found the mistake, we found out that the closest the airline flew to our destination was Minneapolis, Minnesota, which was about 80 miles away from Rochester, Minnesota, which is where the Mayo Clinic is.
We were really stuck because in order to get to the Mayo Clinic in Rochester we had two options… either take another shuttle flight form Minneapolis to Rochester or drive the 80 miles. However, both ways were extremely expensive. Who would think that a short flight like that would cost $400 per person round trip or that driving would cost $200 each way for the rental car? It really was a lot of money. Thank goodness though we were fortunate that someone came forth and volunteered to fly us on a 4-seater prop plane from Minneapolis to Rochester though for free. Even though we are kinda scared of flying on a prop plane because they are so small and dangerous, I am sure it will be ok. But it turned out after all that we won’t be flying because with the weather being the way it is in the Midwest and such, the pilot thought it would be easier and safer to drive the distance instead and asked if we minded if he drove us instead. Of course I didn’t mind because after all those planes don’t fly in bad weather and there would be no guarantees that the plane would fly. At least we would be guaranteed to get there like this. Plus, at least we won’t have to worry about a ‘weight requirement’ and such. We are so fortunate that he was willing to drive us to Rochester because we really can’t afford these extra expenses. When I offered to give him something, he refused to take anything, but we are extremely thankful.
So… we will let you know what happens when we get there. We are supposed to be going for a week and therefore, we are supposed to be coming home Saturday, June 1st. So… just keep your fingers crossed that something good happens there.
In the meantime, I am also going to be headed to Georgia. It turns out that there is another doctor that has joined my ‘team’ down there. Since I can’t get out-of-the country for the very high intensive ketamine coma that I really need due to the finances and because we are having a difficult time finding a place that is doing it at the current moment, we are going to be going to Georgia to have a very intensive ketamine coma down there. Even though I have been having ketamine comas in New York, the amount of ketamine that I require is way too great and not FDA approved and no where the amount that I have been getting. As a result, we are going to be going to Georgia where hopefully this new doctor will be able to help us.
I love this new doctor. He is extremely nice and I am so fortunate that we found him. He is so caring and not only does he seem extremely knowledgeable and a doctor that wants to ‘help,’ but he also is a doctor that has incredible bedside manners. He has called me from Georgia and spent a lot of time on the phone with me. He doesn’t rush me off the phone and lets me ask as many questions as I need. He never calls a question ‘stupid’ and no matter how many times I may ask the same question, he answers every single question as thoroughly as possible. He is one of the nicest doctors I have ever met.
This doctor understands how much suffering I am going through… not just medically and emotionally, but financially as well. In fact, when we asked him if we should come down first to ‘talk and discuss’ everything and let him see everything before we come down for the actual procedures, he insisted that it was a big ‘waste of time.’ He said to us ‘why come here to talk and go over things when we can easily do that over the phone? Why waste both precious time and money when we can easily do this over the phone?’ He was right too. We could discuss everything over the phone and therefore we didn’t have to go down and discuss it face to face. It would definitely save time and money.
The doctor feels so bad about what is happening with me and willing to do whatever he can to help me. The doctor is planning on us coming the week of June 10th. He is going to be doing a very intensive ketamine dose on me for a couple of days. He will be hitting me with doses that are so very high and doses that I am not used to… could be like 400 mg or more. He said that I will probably get very sick from it and he said that I will probably get even a higher unheard dose the following day. But, he said that hopefully it will help.
During this time, I will not just be having the ketamine coma but I will be getting Lumbar and Stellate Sympathetic Blocks, as well as a Celiac Plexus Block. A sympathetic block is an injection of local anesthetic into or around the sympathetic nerves to block the sympathetic nerves on the same side as the injection either in the upper (stellate ganglion blocks) or lower (lumbar sympathetic blocks) extremities. This may in turn reduce pain, swelling, color, sweating and other unusual changes in the lower extremity and may improve mobility. A Celiac Plexus Block is a block that is given to the bundle of nerves located behind the stomach and in front of the diaphragm, which innervates and can improve pain symptoms from a number of organs including stomach, gallbladder, kidneys, liver, pancreas, adrenal glands and blood vessels. Even though I had both these kind of blocks before and they didn’t work, I will be getting them again but they will be totally different. Stellate ganglion blocks or sympathetic blocks helps to relieve pain and ischemia, and is usually performed with local anesthetics followed by therapeutic blockade with steroids and neurolytic agents. However, instead of getting these steroids or neurolytic agents, the doctor will use an adjuvant known as ketamine instead, which will work better. In this way, the nerves will actually get a direct dose of ketamine as well and instead of the ketamine being infused throughout my body and being dispersed throughout, it will be put directly on the nerves as well. This has been really effective as there was significant pain relief of longer duration with significant rise temperature. It has even showed to heal gangrene limbs. So hopefully it’ll work.
In addition, I have only really gotten ketamine when I had the ‘comas.’ Ketamine is known as ‘special K’ and is basically illegal and a street drug. But this doctor said that he would give me ketamine that I can take at home that could possibly help me and help make me also more comfortable as well. He told me that he will give me ketamine nasal sprays and ketamine lotions. In this way, not only will I absorb the ketamine through my skin when I apply it as a lotion so it goes onto my nerves, but when I spray the ketamine in nose, it will be like short quick bursts but extremely helpful. It could honestly be like taking like 20-30 mg, which can make a big difference especially when you are suffering in so much pain.
Besides receiving the ketamine in these large infusions, there is possibility of having a pump of ketamine being connected to me 24/7 and I could wear it as a fanny pack so that I can constantly be given a low dose of ketamine all the time. In this way, even though I won’t be given a large dose like I would in Georgia, hopefully this low dose will help me in the in-between doses in Georgia and let me live more at home and make me more comfortable and tolerable to live. However, when I told him that no doctor in my area performs this treatment, he said that he would ‘talk to my doctor and explain the procedure to him’ and see if he would be ‘willing’ to take on the treatment and cover him while I am in New York. Since my doctors up in New York don’t have the equipment, this doctor was also nice to also volunteer to give me the equipment that I would need because I would probably have no other way of getting it. This way I won’t have to live in Georgia, and between the really high dose ketamine comas, I will be able to hopefully function and survive because the ketamine I get 24/7 every day in the fanny pack will buy time and help. It’s so much and complicated.
I was also told that the doctor could possibly put a pump in me. You don’t know how good that was to hear. I have wanted a pump for so long because not only will it stop me from having to take all those pills (over 50 pills) that I am having difficulty taking and swallowing, but it will make them more powerful and easier to take. It will also enable me to get medication that I normally cannot take because it doesn’t come in pill form such as the snail venom, which has been proven to help with my illness especially with my illness. Finally, the pump is supposed to cut down on the side-effects of the medications as well so hopefully I won’t get as many side effects as I currently get from all the pills I take nowadays. However, since I am so very small, all the doctors that I have seen said it was ‘impossible’ to put a pump in me. This doctor said that he has put pumps in patients that are very thin and that doctors have said it was ‘impossible’ to do so. He said that he put pumps in 80-pound patients and found places that doctors couldn’t. Granted I am not 80 pounds, but I am hoping that he can really still find a place that will be able to still be doable.
The doctor is planning on us coming the week of June 10th. He is going to be doing a very intensive ketamine dose on me for a couple of days. He will be hitting me with doses that are so very high and doses that I am not used to. He said that I will probably get very sick from it and he said that I will probably get even a higher unheard dose the following day. But, he said that hopefully it will help. Depending on how I do, it will determine the next step.
I am really hoping that this doctor will be able to help me. I really have high hopes for him because he told me about how he had another patient that was basically like a ‘stroke’ victim when she comes to him every six months and after he treats her, she walks out of there ‘normal.’ The doc said that he has a patient that he treats that had the out-of-the country coma and comes in like every six month on a stretcher. Like I said, she comes in like a stroke victim and is in so much pain and so paralyzed like me. She also has severe autonomic dysfunction like me. But after he gives her treatment… She walks out of there like a CHAMP and it buys her like 6 months. These are like ‘boosters’ to that huge ketamine coma she had out-of-the country. So I’m really hoping he can help me because he said he knows exactly what I’m dealing with between the pain, GI problems, and autonomic dysfunction and everything else. So cross your fingers. At this point I have really nothing to lose because things are just so horrendous and I need treatment so desperately and immediately.
So that is the upcoming plan. I just hope that everything works out. It is going to be really hard on me and my family in the next few weeks because we are going to be doing a lot of traveling. We are supposed to be coming back from Minnesota on the 1st of June and we then leave basically on June 9th to go to Georgia. We really get no time to be at home because by the time we get home, it is time to leave again. In addition, we are supposed to be leaving for California June 24th but who knows now because of Georgia getting put in the pot. It was really important to go to California because it was supposed to ‘buy’ me time, as they were going to try to put tubes in me again and try to ‘feed me’ and nourish me since I am so very low in weight and deteriorating so much. I don’t know how we are going to manage to do all three trips because I don’t know how we are going to afford all three and how my dad is going to be able to take off from work so much time. But California will be extremely important and needed especially if nothing really works out well at the Mayo Clinic or at Georgia.
I am really nervous because I really don’t know how we are going to manage all this and I know how much I am running out of time. The doctors have already said how much I need help and if it isn’t sought soon… something seriously bad is definitely going to happen. They are so afraid that I am not going to even make it through the summer if something isn’t done. But I know that going to Mayo Clinic, Georgia, and California means a lot of time away and money that dad misses out on because dad is unable to work. I know how difficult it is when we just go to one place and how hard it is for dad to catch up on his work when we go only to one place for a week, now we are going to three places and each place is for such a long time too (Mayo is for a week, Georgia is for a week, California is for 2 weeks). But what stinks is if I don’t go to Cali in June… I’ll have to wait until like July 22 and that’s a VERY long time and if nothing works it helps in Minnesota or Georgia… Who knows if I’ll make it that long?
Well, with all these upcoming plans and such, I really need help financially since nothing in this world is ‘free.’ I was hoping perhaps mom or dad might have won the 600 million Powerball, but obviously we didn’t. So… that only means one thing… I need help from others if all this is going to occur. I have tried various ways to try to bring attention to my cause and try to find various ways to fundraise. However, nothing really has come about. So, if you can think of any ways or can manage to bring attention to my cause and website for donations, I would really appreciate it. I desperately need this treatment and I am walking a tightrope that is ready to snap. I don’t want it to break yet. I still have too much to live for, as I still have the ambition to become a doctor and help others. Please help me in my fight against my disease by raising money so that I can receive the treatment that I need to survive. While the cure of my illness sometimes seems a long way off, one day my disease will be eradicated through your help of bringing awareness to my cause and so I can get the appropriate treatment. Hopefully, there can be an end soon. You don’t stop hoping because if you have hope, you can do anything!
Well… gonna get going. Have a busy next few days. I am gotta pack and everything. Looking for some good movies and books to bring with me. If you have any suggestions, please let me know.