Well the countdown is on! Not including today… 5 more days until Christmas and only 10 more days until 2016. I can’t believe how fast it is coming. It is probably coming so fast because this weather has been totally unbelievable. Forget about worrying if it is going to be a ‘white Christmas!’ We will be lucky if it is even going to be a ‘cold’ Christmas. Hopefully the weather will stay like this and it won’t get colder and it won’t snow, but I have a feeling that we are going to get slammed once the New Year comes… just like we did last year. Once the snow started last year, we couldn’t come up for air.
Hopefully it won’t happen like that and hopefully it won’t happen in January because we are hopefully going to be heading to Nebraska Medical Center, which is known for HUGE snowfalls. I really need to get to Nebraska as soon as possible and hopefully nothing will happen that will cause us to cancel the trip because I am extremely ill and getting worse. I desperately need treatment if I am going to be able to see my birthday, which is not too far away (February 7th).
I am only hoping and praying that Santa brings me a great Christmas gift on Friday, which of course would be waking up to find me “cured” and able to have my life back. My entire life was taken from me because of this illness and I have been left with basically nothing. I can no longer eat or drink anything. I have no social life. I have no friends, as everyone (both friends and family) have walked out on me. Gosh you really learn who your true friends and family are when you are sick. My calendar is all filled up with doctor appointments and procedures instead of with fun social events like it should be for a person my age. My phone serves the purpose of just being a communication link to doctors instead of being a way to communicate socially with others for fun. I can’t remember the last time my family and me went out to dinner or even had a vacation (going away to medical appointments isn’t quite considered a vacation because first of all mom isn’t able to go with us due to the fact that someone has to stay behind to watch the business and keep it going, as well as there isn’t enough money to have all of us to go. It is hard enough for just my dad and me to afford to go. Second of all… it isn’t like going to the hospital and seeing doctors is any fun too!). In just plain English… my life just stinks. I desperately lost everything… including all my dreams. I wanted to make a difference in the world so badly. I had a dream of becoming a doctor so that I could help others and make the hugest difference in the life of someone else and also in society. It is a shame how I worked my butt off all throughout school and got all straight A’s and had a 4.0 GPA in college, but I was then robbed of this dream. I only hope and wish that I get the treatment that I need to be ‘cured’ so that I can not only continue to be able to live my life and reclaim all that I have lost, but so that I can be able to be come that doctor I always dreamed I would be so that I can make a difference in the life of another person. But of course I desperately need your help if I am going to have that happen.
I know deep down that for Santa to bring me this special gift that it would really be a “miracle!” That is why I desperately need your help. Not only do I desperately need your help if I am going to be able to have my life back, but I desperately need your help just to get me the treatment that I need to continue living. It has gotten to the point that if something isn’t done quickly, I am not going to make it much longer. That is why I need to get to Nebraska ASAP and I can’t have anything stand in its way. From the last time I wrote… things have gotten realy bad.
Since the last time I wrote, I have really taken a turn for the worst. So much has happened also that it is literally unbelievable. To begin with, I have developed severe swelling and pitted edema in my lower extremities. My legs literally are so swollen that when I went to the doctor, the doctor and nurses were like “oh my gosh! What on earth happened? Your legs are soooooo swollen!” I am literally gaining like 2 pounds a day on fluid. After seeing the doctor, they believe that I am suffering from cellulitis, which is extremely dangerous and needs immediate attention and help.
Cellulitis is a common, potentially serious bacterial skin infection. Cellulitis appears as a swollen, red area of skin that feels hot and tender. It can spread rapidly to other parts of the body. In addition, the area of infection is painful and therefore, it is super painful for me because not only am I extremely hypersensitive so that the slightest touch or pain puts me in horrendous agony, but I am already in excruciating pain already!! The bacteria that causes cellulitis can spread rapidly, entering lymph nodes and your bloodstream. Left untreated, the spreading infection can rapidly turn life-threatening. The bacteria that causes cellulitis can spread rapidly, entering lymph nodes and your bloodstream. It can even spread to the deep layer of tissue called the fascial lining and cause flesh-eating strep (necrotizing fasciitis), which of course is an extreme emergency. However, with my body being the way it is and especially since it doesn’t absorb… it is not going to be easy fighting this.
I am in such excruciating pain because of the cellulitis. Not only are my legs feeling like lead weights because they are so heavy from being filled up with so much fluid. I am so thirsty and yet the more that I drink, the worst that the pitted edema gets in my legs. Due to the cellulitis and it causing the autonomic dysfunction to also worsen, it has made it literally impossible to go to the bathroom. Therefore, I am retaining all of my fluids, which is causing the pitted edema to worsen as well as the pain. In addition, the fluid is becoming so much that it is spilling into my lungs as well and making it difficult to breathe. It is just horrible.
I spent the entire day in the hospital this past Wednesday. To think… I didn’t even know that I was going to have to spend the entire day in the hospital for IV antibiotics either. I was at the hospital to get my ketamine treatment, but when the doctors saw what was happening, they immediately put me on IV antibiotics. So in a way I killed 2 birds with one stone. I not only had my ketamine treatment and procedures in my spine, which I was scheduled for, but I had the IV antibiotics too. What a day it was!
I was then sent home with a very high dose of antibiotics. The doctor also wanted to put me on a diuretic, but I was really hesitant about it. I heard really bad things about them and therefore, the doctors said that they would hold off on them and see what happens. Yet, with me not being able to absorb, we don’t know if I will be able to be treated with oral antibiotics. If the swelling doesn’t go away or worsens, I will have to go back to the hospital and get more IV antibiotics. However, if I do have to go back to get more antibiotics through the IV, I doubt it will be a one-day thing like it was this last time. I will probably have to stay there for at least a couple of days, which I really don’t want to do. You would think that with all that I have been through that I would be used to the hospital by now. But instead it is the reverse. I can’t stand them. The more that I am hospitalized, the worst it is getting. I am literally freaking out when I have to be hospitalized. I don’t mind going as long as I know I am coming home, but if I have to stay… I freak!
I am totally afraid that I am going to have to go back because the pitted edema is still very much there and whereas I was able to urinate on Wednesday and Thursday, it isn’t happening anymore. I guess the oral antibiotics aren’t helping me as much as the IV antibiotics did. I am wondering now if they are helping even at all. I just really hope that they are because I am so scared that something is going to happen like the infection will worsen and could cause me to lose my leg or something, or that I will have to be hospitalized.
They aren’t really quite sure what caused the cellulitis. But they are thinking that it has to do with my failed GI system. They said that my colon has to desperately come out because of all the toxins it is leaking out and also because it is causing blockages. That is why I need to get to Nebraska as soon as possible. I need to get this taken care of because I am in a life-threatening crisis that is a real emergency right now.
I also went to have a CT scan on Thursday to further determine what was happening. Due to my illness, they put me to sleep when I underwent the scan because they needed me to hold perfectly still and I wouldn’t be able to do so because of the autonomic dysfunction and the pain. In addition, they also had to give me contrast and therefore, they thought that it would help the autonomic dysfunction not going out-of-control and me feeling it when they administered it because the contrast did cause a warm sensation throughout the body, which could easily stir up the autonomic dysfunction and make me uncomfortable.
The results of the CT scan were not good and therefore I now have to go for abdominal MRI to further investigate what is happening. At least they will be putting me to sleep for this as well. It is such an emergency for this to happen that the doctor is trying to get the authorization to undergo the scan asap. Not only did they find degenerative bone disease and multilevel degenerative disc disease of the lumbar spine with foraminal narrowing narrowing of the spine, they were very concerned with the hyper-enhancement of the small bowel. They think that I have enteritis, as well as colon mechanical-fecal obstruction that is impeding lymphatic flow. There is also so much other stuff going on that can cause further problems and infection.
The doctors are saying how I need to get the culprit out as soon as possible because it is causing so many problems. I need to get the colon removed and a new GI system. So I desperately need your help so that I can get the lifesaving treatment that I need. I am scheduled to leave for Nebraska in January and I will need all the help I can get in trying to raise money because it is going to cost a lot. This is going to be the first of many trips and we will also have to stay a long time there as well because the treatment that I need (even without the transplant) is long.
I can’t wait to get to Nebraska. Dad and I are going like usual. We of course are also going to take the Scoobster! I am really happy that we are going because I really feel comfortable there. This hospital is like no other that we have gone too. Even when I speak to them on the phone, I don’t just feel like another “patient!” They treat me and everyone else like a family member. Nebraska Medicine transplantation specialists were among the first to recognize patients suffering from the complications of intestinal failure and began performing liver and intestinal transplants. In 1993, we became one of the first medical centers to perform isolated intestinal transplants. Today, Nebraska Medicine is one of a few facilities with expertise in intestinal failure – and one of the busiest programs in the United States. Innovation, solid outcomes and high patient survival rates have distinguished our center as a leader in intestinal failure. I have heard nothing but good things about this hospital and my doctors.
The intestinal transplant program has a worldwide reputation. They performed more intestinal transplants than any other hospital in the world. People go from having no hope to realizing that, very likely, they will be able to live and eat normally. So I am really hoping that this is where I will be able to get my miracle.
So… this is it. I just wanted to share all that has been happening. This will be Scooby’s first Christmas and therefore, I want to make it as special as possible for him. I have a Christmas sweater for him to wear, but who knows with the weather now if he will be able to wear it because it is soooo warm. Hopefully he will because it is sooooo cute. Scooby is my little baby. I am so fortunate to have him. He goes with me everywhere and helps me so much get through each day. Even the doctors say that if I didn’t have him that I probably wouldn’t be alive today. They think that the reason I am holding on and still as strong as I am is because of Scooby. We do everything together from going to doctors to going to the hospitals to going anywhere and everywhere I have to go. He even has his own car seat and sunglasses. We are inseparable.
Everyone that sees him falls in love with him because he is like a real life “teddy bear!” No one can believe how well-behaved he is especially when I tell them that he is only 9-months old. He loves getting dressed in the morning and in fact won’t even go outside to the bathroom until he is dressed. Scooby is my ‘service dog’ and therefore he can’t be touched really by others because he is technically working. So at night when we take off his clothes, my dad always teases him by not only telling him that he is ‘naked,’ but he tells him that he can ‘act like a dog again because he isn’t working!’ Scooby is definitely one of a kind.
Scooby can always be spotted in his stroller and since he is so loveable… everyone falls in love with him and wants to pet him. We had to get labels and tags to put all over him that says “Service Dog” and “Do Not Pet” because like I said before he isn’t supposed to be technically pet when he is working. He even pulls back when someone goes to pet him and to be fair to him, we got him some tags so people won’t have to bother him anymore.
Please help get me the treatment that I need. I desperately need all the help that I can get in trying to raise money so that I can get the help to get to Nebraska so I can get the treatment that I desperately need, as well as to continue my day-to-day treatment at home. I am literally watching myself die and deteriorate so fast.
Please spread this link so I can try to get as much donations as possible because every dollar is one less that we have to come up with and is extremely helpful. www.gofundme.com/help4Fallon. Thank you so much for all your support and encouragement. Have a very happy holiday and a very happy and healthy New Year.