Told you that I would update you on what happens as soon as I knew something. Well… here it is…
Spoke to Nebraska and everything appears to be a “GO!” I am scheduled to fly out November 18th. I just now have to last that long. It isn’t that far off, so I hope I can make it that far. But, I am not counting my chickens before they hatch, so I am just going to take one day at a time.
I was really hesitant to go that week because it was Thanksgiving. It was really important for me to stay at home that week because I am so sick and have a gut feeling that this is my very last Thanksgiving. I really wanted to celebrate it with my entire family, which included my mom and brother since they won’t be going to Nebraska with my dad and me. Unfortunately, it is only my dad who travels with me because not only is it too expensive for the entire family to go to all these places, but someone has to stay home and take care of things such as the house, animals, and business to a point. Even though the business can’t really function without my dad since he is the one who really “owns” the business and does the work (he goes out and services the customers and puts everything together), my mom does her best to try to keep the business going when we aren’t here. Although she can’t physically do the work that is needed to get away the pests, insects, rodents, etc., at least she can be in the office to take the calls when people call in. If she weren’t there, people would just bypass us and move on to another company. But of course even though she does take the call, the company does suffer because my dad is needed to carry out the work. Only so much work can go out via the other technicians. Plus, my mom pays the bills. So, at least that is accomplished as well.
Some people might ask why she doesn’t go with me to the hospitals instead of my dad. Although it might seem better that my mom go with me to the hospitals and travel with me to the necessary hospitals, it is really better if my dad travels with me for multiple reasons. First of all, my mom needs to be around for the business. Although the business can’t really “function” without my dad because the work can’t be carried out physically, at least the bills can be paid to a point (as long as there is money) and she can answer the phones when they ring. If my dad was here and my mom was with me, there would be no one in the office and as a result, no new work could be brought in because there would be no one in the office to answer the phones. My dad also isn’t really capable of doing payroll, sending out invoices to customers, and paying bills. Whereas my dad does all the “physical” work in the business so that the business can function and the work can get carried out, the business cannot function without my mom because my mom is the only one who can really do the “internal” work of the company. She is the one who allows the company to function at the “office” level and makes sure that everything runs smoothly. They really make up a great team and when one of them is missing, it really takes a HUGE toll on the company because the company is unable to function. So, which is the better of the two evils? We figured that it would be better for my dad to travel with me because if my dad was left here alone in the company, he wouldn’t be able to do everything and he doesn’t really know how to do payroll, wouldn’t be able to send invoices to customers (so that we can get paid and money can be brought in to some point), bills can be paid, and he can be in the office to answer phone calls and bring in new work.
In addition, my mom can’t travel with me to various places because she isn’t well herself. My mom also suffers from her own medical problems, as she suffers from Multiple Sclerosis. Some might say that my family has our hands full, but we try to make do with what we are dealt with. My mom has really been a real “trooper” because we all know how difficult Multiple Sclerosis can be to handle and especially when she doesn’t get as much help, as she really needs. It would really be too much of a trouble for her to travel with me with her own illness and therefore, she remains at home.
My mom not only suffers from multiple sclerosis, but she also needs knee replacement surgery. As a result, she can barely walk. Problems with walking and gait are one of the biggest problems with multiple sclerosis, but having this knee problem is a huge problem. Her knee is so bad that the knee has basically collapsed and as a result, she literally has bone rubbing on bone. She can barely walk and is walking with a cane, if at all, and she desperately needs knee replacement surgery. However, she is not getting the surgery because of my health. I am so fortunate that I have such a wonderful mother that puts herself on the back burner so that I can take care of myself because I know how difficult and painful this is for her. Not only can she not walk, but she is also in enormous pain. Yet, she doesn’t have the surgery that could and would correct this situation because she doesn’t have the time to have it since the recuperation is so long. She wouldn’t be able to work or do anything for such awhile and therefore, it would really interfere with me getting treatment. There would be absolutely no way I would be able to travel to get the necessary treatment that I need because there would be absolutely no one available to stay in the office to do the stuff that needs to be done for the office to function. Even though the office minimally functions at the level it does when we are away and it really has a detrimental effect on the business, at least it still is “functioning.” Without my mom being there, it would be horrendous as the business would definitely be lost, as there would be no one to pay the bills, answer the calls, send out invoices, do the work, etc. Essentially, the business wouldn’t be able to exist and we would lose the business for sure… something we definitely can’t afford to have happen. So… my mom has put aside her problems so that I can get the treatment that I need.
I can’t thank my mom enough for all that she has done for me and continues to do for me. I really do have the best mom in the world. I am just so worried that something is going to happen to her because people with multiple sclerosis really can’t take so much stress and work like she does. Plus, with all the inflammation that is occurring because of her knee, I am sure that it is affecting her MS as well. I am also so very worried that she is going to fall or something because she can barely walk. She is in enormous pain and especially when we are gone, there is no one to help her do anything. My mom desperately needs knee replacement surgery and I only wish there was something that can be done so that she could get it. She is in an enormous amount of pain and she definitely shouldn’t be in this much pain. She shouldn’t have to suffer with this much pain, especially when there is a way to correct it and have all that pain disappear. Yet, she constantly battles this pain and such because she wants me to take care of myself instead. She always puts my needs ahead of herself and with money being so “tight” as it is, we really can’t afford to have the business close down or not have any money brought in. It would really be detrimental to us as we are having a HUGE amount of trouble paying our bills as it is. If I could make it better for her, I wish I could. I just wish I would get better already so that she could take care of herself.
Perhaps one of the reasons that I suffer from an autonomic disease is because my mom has MS. After all, MS is a chronic demyelinating inflammatory disorder, and it is presumed to be of autoimmune etiology. In fact, the most common manifestations of the Autonomic Dysfunction in patients with MS include bladder dysfunction, sleep disturbances, sweating, gastrointestinal and cardiovascular disturbances. In addition, digestion is controlled by the autonomic nervous system. When the ANS malfunctions, the “victim” commonly develops gastrointestinal problems. Therefore, it is no wonder that I developed a problem known as gastroparesis.
Gastroparesis is a condition that reduces the ability of the stomach to empty its contents, but there is no blockage (obstruction). Gastroparesis, also called delayed gastric emptying, is a disorder that slows or stops the movement of food from the stomach to the small intestine. Normally, the muscles of the stomach, which are controlled by the vagus nerve, contract to break up food and move it through the gastrointestinal (GI) tract. The GI tract is a series of hollow organs joined in a long, twisting tube from the mouth to the anus. The movement of muscles in the GI tract, along with the release of hormones and enzymes, allows for the digestion of food. Gastroparesis can occur when the vagus nerve is damaged by illness or injury and the stomach muscles stop working normally. Food then moves slowly from the stomach to the small intestine or stops moving altogether. Gastroparesis is complicated to treat and treatment options are limited. There are few medications available, mostly geared towards symptom control rather than dealing with the underlying problem. For this reason, they are often ineffective.
As a result, I have been really suffering and have been really sick. Besides suffering from my underlying neurogical disease of RSD and my brain tumor, I have been suffering from this severe gastroparesis. I barely weigh 70 pounds and my body is quickly shutting down. I am suffering so much and I really need something to be done in order to be able to continue to live. However, not many doctors know how to treat this illness, as it is extremely difficult to treat. I have been to countless number of doctors and exhausted all my options in the New York area. I have traveled to various places in the United States and tried various methods to improve my quality of living. Yet, it has come down to the fact that only a GI transplant would potentially save my life.
I need a transplant that is extremely rare and only 8 hospitals in the country actually do it. It runs the highest rejection rate of all transplants. I need a new stomach, small and large intestine, and a brand new pancreas at the very least. In short, I need a multi-organ visceral transplant if I have any chance of living. Although the best place for me to get this done is California because they have all the treatment teams there to handle all my underlying conditions, the only places that my insurance will cover will be Nebraska and Indiana. Only if they “deny” me will the insurance company most likely pay for California to have it done there. However, even with the insurance company paying for the transplant, which will cost over a million dollars, I desperately need the help of others if I am going to be able to have it done. There is no way that I can be able to afford to continue treatment, as my disease as really become a financial burden on my family. The copayments, doctors, traveling expenses, medications, insurance costs, deductibles, etc. all add up and we can’t afford it anymore despite making as many “cuts” as we did. Even with us going to Nebraska and having the insurance pay for the actual transplant, we still need help because we have to worry about the traveling expenses, copayments, deductibles, medications, etc. We will have to worry about the living expenses while we are there because I will have to live there for a period of time, and each time I go into the hospital, go for a test, see a doctor, etc., there is a huge copayment to be paid. In addition, after the transplant, I will also have to pay for the anti-rejection medications, which will cost me $1000 alone just for those… and that is not including all the other medications that I will need.
We have no idea how we are going to be able to afford all of this. My only hope is that I will be able to raise money through the help of others. That is my only chance of being able to “survive.” I only hope that through the help of others… whether it is through the prayers, spreading the word that I need help and of my website, or even donating… that I will receive some donations that will be able to help me. After all, every $1 makes a HUGE difference.
Anyway, I told you that I would write when I had more info to share. Well… it appears that we are supposed to be leaving November 18th for Nebraska. We had to take a very early flight because I have surgery scheduled on Monday. The doctors want to do an “exploratory” type of surgery to see exactly what is going on and to get a better picture of what is doing. After all, even though I have a huge amount of records and have been to other places and had other doctors look at me, this is the first time I will be at the hospital in Nebraska.
This hospital is really intensive with getting a very “clear” picture in what they are dealing with. Even though they had received all my records, they still wanted to run their own tests to make sure that all the tests were as accurate as could be. They insist that the only records that they can “trust” are the records that they run and therefore, they want to run their own despite all the tests that I already had. In addition, they don’t just want to run GI test that are in the field we are dealing with. They want a complete picture of me, and therefore, they want to know my entire body. They are running every single test that you can imagine from bone tests (dexa scans) to pap smears to gastric emptying studies to more. They want to make sure that they don’t miss anything in any field. It is nice to know that they are very thorough.
When I go for the surgery on Monday, I will be having the head of the gastroenterology department perform the surgery. I knew that the doctor that I was seeing when I went down there was head of the “transplant” team and when I asked if he was the one performing the surgery as well, I was told that the head of the gastro dept. was doing it instead. I can’t believe that I am getting all the very best doctors working on me. I am not just getting the “ordinary” doctors that work in the hospital, if you know what I mean. Instead, they are making sure that I receive the very best care.
The surgery will be done under bypass as well. They are putting me under general anesthesia and due to my complex medical history and how sick I am, they will be putting me on total bypass. With all my medications that I take and how very sick I am, it isn’t safe to not do it any other way. They said that my organs, heart, lungs, etc. need to rest during this time and they wouldn’t be able to manage everything during this time.
So, I will be having surgery on Monday and then meeting with the transplant doctor, Dr. Mercer on Tuesday. Like I said before, he is “head” of the transplant team, so I know that I will be in very good hands. I will be having additional testing and such for the next couple of days. However, they knew how very important it was that I was home for Thanksgiving and guess what? They are allowing me to come home for thanksgiving. Even though I will be traveling on that actual day, at least I am coming home.
I am so glad to be coming home for Thanksgiving because it was so very important to me. I really wanted to celebrate thanksgiving with my mom and brother and such because I have a feeling with my deteriorating health that it is going to be my very last thanksgiving. I definitely have a feeling that if I don’t get the transplant that this will be my very last thanksgiving. I definitely won’t make it another year without the transplant. I am just way too sick. I just don’t weigh enough and my organs are shutting down too much as well. The doctors already said that if I was a “male,” I definitely wouldn’t be alive. Thankfully, I am a female and therefore, I am able to survive a bit longer because females can live at lower levels than males. Yet, even at the levels that females can live at, I am already at their border. The doctors have already stated that they don’t know how much longer I can “hang in there.” They already said that I can basically “die any day.” So… in the meantime, I just wanna celebrate each day that I am living and cherish each day as well. I wanna live each day to the fullest.
Each Thanksgiving, I am the one who usually makes the dinner. However, since I will first be coming home this Thanksgiving on that actual day, it gives me no time to actually “make” thanksgiving. I did suggest to my mom that we would have a “thanksgiving brisket” instead because it takes so much less time to cook a brisket than a turkey, but something about having a brisket instead of a turkey on thanksgiving, it just doesn’t seem right. So, my mom said that we will order a pre-cooked turkey with all the trimmings and therefore, it will be all cooked and prepared for us. This way we will still be able to have our “official” turkey. It won’t be as nearly as good as if I cooked the meal myself, but it will just have to do. I insisted that I would still make the side dishes because our flight arrived about 1 O’clock, but my father insisted that I probably will be too “sick” to do anything. After all, traveling takes a lot out of me and especially traveling from Nebraska and being up all those hours, it probably will exhaust me.
But, I am just so glad that I am getting to come home that day. I do have to return though 2 weeks later to continue the treatment and do the surgery in whatever is decided during the time I go down during the week of the 18th.
I really can’t believe how well the hospital in Nebraska is taking care of me. I never heard of the stuff that they are doing for me. When I was talking to them and scheduling everything, they wanted my flight numbers. I couldn’t imagine what it would be for, but apparently we don’t have to worry about transportation to or from the airport. Instead, the people from the hospital (doctors) will be picking us up from the airport and also driving us back to the airport when we leave. I can’t believe how much they will be keeping complete tabs on me from the moment I leave New York to the minute I touch down in Nebraska. They even have my complete flight information from the time I leave Nebraska to the minute I return to New York, which includes my stopover as well too. I would think they would at the very most just want my flight time I am leaving. I wouldn’t think that they would want the exact details. But… they really want to keep close tabs on me, like I said before.
I never heard of anything like this before. When they said that they were picking us up and driving us to the airport when we were leaving, I was completely surprised. I would never think that a hospital would do this. But, because I am so very sick and because I am on their service… they end up doing this. It isn’t like the entire hospital does it for everyone. It is just their service. You know?
In addition, I was also told that they would make the accommodations for me. Originally I thought I would have to stay at a hotel that was “separate” from the hospital. Who would think that the hospital would have its own hotel connected to it? The service that I am on in the hospital actually has its own hotel in the hospital so that we don’t have to leave the hospital at all. I couldn’t believe it. However, I don’t know if my dad and I are going to stay there during this time, but we know we are definitely probably going to stay there the next time.
The hotel in the hospital consists of suites, so it is just like staying in a real hotel. The only thing is that it doesn’t have a “restaurant” per se. Instead, it is eating in the cafeteria in the hospital and they have SUBWAY and other stuff. Knowing how difficult I have eating and such, I don’t know if it is such a good idea to stay there and such because I definitely can’t get done SUBWAY and stuff like that. However, the next time we go to the hospital, we are definitely going to be staying in the hotel at the hospital because I will be hospitalized the entire time. In this way, my dad will be able to stay very close to me and not have to worry about traveling back and forth to the hospital and hotel. It will be so much more convenient. We won’t have to worry about me eating either because I will be on the actual “inpatient floor” of the hospital. I never heard of things like this. They really try to make it as “homey” as possibly for you and as “easy” for you as possible too. They are going to make arrangements at the hotel at the hospital for both visits in the meantime and we will decide as we get closer, but in the meantime at least we will have that option.
In a way it would be better to stay at the hotel on campus as well because it will be so very cold in Nebraska. I hate the cold and it is already so cold there. When I spoke to them today, it is only having a high of 40 degrees. Gosh, I can only imagine how cold it is going to be in 3 weeks. I am really going to freeze. I am definitely going to have to bring winter wear… scarf, gloves, winter coat, etc. At least they said I won’t have to worry about snow. They don’t get snow until later on in the year. However, with the weather being the way it has been lately, you never know what is going to happen. Anything is possible.
Speaking of weather… I am really crossing my fingers that the storm (Hurricane Sandy) isn’t so bad. Even though we are listed with LIPA as getting priority status in case of an EMERGENCY, I still don’t want to bother having to deal with this issue. Having no power is definitely no fun. I don’t know what I am going to do with no power because my life sustaining equipment relies on it, I need the heat that relies on it, and of course I need to eat and drink that rely on the usage of power as well. So… I am just hoping that everything will be ok and the storm will “fiddle” out as much as possible. I remember last year how they said that the storm was going to be so HUGE and they had all these evacuations and everything. We ended up staying because we had our animals even though we did pack a bag in case we had to get out in an emergency. However, it definitely was not that much to worry about and we really lucked out. Hopefully we will be in the same boat.
Well… I am going to get going. I just wanted to update you on all that is going on. When I know more information, I will let you know more. I have bloods on Monday, which is when the storm is going to hit, so I hope that I still get to get them drawn. With my bloods being the way that they are… it is really detrimental for me to have them done because my heart is doing really bad. It is at the level that I can have cardiac arrest very easily and can easily go into an arrhythmia. They definitely need to be closely monitored because if they drop further, it can be very dangerous (even more so than now). I have been fortunate to be able to bargain with the doctors as of now to keep me out of the hospital, but I know that will only keep up for so long. I know that if it continues to drop… they will only bargain for so long. I know honestly the best place for me is the hospital, but I just don’t want to go. I don’t want to spend my life in the hospital and I know that is what is going to happen if I go there. I know that if I go to the hospital, it will just be a merry-go-round because even though they might be able to bring up my bloods to a point, it won’t be without doing further harm because I can’t tolerate the medication in or IVs in my veins, and by the time I am released… it will only be a matter of days until I am back to square one. Then I will only be back in the same situation. When I had this done the last time and was discharged, I was back within the same boat within 5 days. It isn’t where it even lasted for a while.
I know I am sick and I don’t want to spend whatever time I have left in the hospital. Plus… with my condition, spending time in the hospital can only make me worse because I can’t be treated like a “normal” or “typical” patient. Whenever I go to the hospital, the doctors and nurses don’t really know how to treat me and they always end up saying that they “see” things with me that they have never seen before. I am always such a “sight” to be seen.
Well, until next time… please say a prayer, spread the word that “help” is needed and every $1 does make a difference. Thanks again for all the help you have done for me. I appreciate anything that you have done and continue to do for me. I can’t tell you how much it means to me. After all, my life depends on it and I am too young to die. I still have my whole life to live and I have so much to live for and still want to do. I am the “Energizer Bunny” and my batteries aren’t ready to “die out” yet.