Happy Holidays! O my goodness. I can’t believe that the holidays are here already and the New Year is basically just about here too. I really hope that 2014 is going to be a lot better than 2013 because I don’t think I can tolerate another bad year. I am only hoping for a happy, healthy, and prosperous New Year, but in terms of being realistic… I know that is not going to happen without getting the help that I need to overcome my illness. I have been hoping each year that the New Year would be better than the last, but it never is. The only way it will happen is if I actually “get better,” which requires the help of others. Like I have said so many times in the past, I need expensive treatments that my family cannot afford by ourselves. Therefore, it is important that I receive as many donations as I can so that I will be able to receive the appropriate treatment needed to save my life. I also need so many prayers because I really need a “miracle” to happen. I am really sick and deteriorating beyond belief. The treatments that I even require are extremely high-risk and dangerous. For example, to date, fewer than 300 patients in the U.S. have undergone the transplant that I need, which is fraught with even more rejection-related complications than other organ transplants. The intestines are loaded with immune-system cells meant to fight off invaders and when they’re transplanted, those same cells work against the recipient.
It has been a “miracle” that I have lasted this long. In fact, I have even fascinated the doctors that I am still alive because they never thought in their wildest dreams that I would still be alive today especially in the condition that I am in. Yet, despite facing such a killer condition, I have somehow survived. Yet, my luck has now run out and unless something is done now, I am not going to be able to last much longer.
Yet, I am still hoping to have a happy holiday season despite this all. I am hoping that since this is the season for “giving,” I might be able to receive some additional donations because people might consider my treatment goal as an option for giving back and making a difference during the holiday season. I am also hoping for that Christmas miracle so that I can overcome my illness and be able to live.
Well… I just wanted to give you the absolute latest because so much has been occurring. First off… things have gotten so horrendous with my GI system. I am in so much pain with my GI system and every time I try to eat or drink, it only makes things worse. I am so incredibly thirsty because of the fact that I can’t absorb anything anymore. I keep drinking and drinking to try to quench my thirst, but all it keeps doing is making me aspirate more, drown in my fluids, cause me more abdominal pains because of the distension of the liquids, etc.
The doctors don’t want me eating or drinking anymore because my body can’t support it anymore. In fact, it is only making things worse. However, since you have to eat and drink in order to live, I still have been doing this and causing more problems because that is all I can do until I receive the tubes that I need. However, in order to receive the tubes that I need, I need to have them done in a hospital such as Hopkins (in Maryland), Stanford (in California), or Mayo Clinic (in Minnesota)… and those hospitals aren’t exactly located around the corner. Those hospitals are all going to cost us money that we don’t have. Not only will we have to pay the cost of the medical bills that we would have incurred even if the operation was local, but we have to worry about traveling expenses and also the fact that no income will be made for my family during this time because my dad won’t be able to work because he will be with me during this time.
After speaking with my team at Hopkins, I was told that I desperately have to get down to see them as soon as possible. My heart and lungs are also suffering, as my respiration is only in the single digits and I am filling up with fluids and literally ‘drowning’ in them. Even my heart rate is dropping incredibly low. We think its because the autonomic dysfunction is acting up quite a lot, but even so, they want to put in a pacemaker because of the fact that my heart rate keeps dropping to the low 30s. Yet, it will be a major procedure for me because I will need to have “open heart” surgery because I need this pacemaker to be surgically implanted under the muscle, ribs, etc. It isn’t going to be a “minor” operation like it is for other people. Then with all my other complications, it is really a difficult operation.
The doctors have also stated how I desperately need the multivisceral transplant (stomach, small and large intestine, pancreas and liver) more than ever. However, I really am too ill right now to receive it, but they are hoping to make me stronger with the tubes and such so that when the window of opportunity opens up… we will be able to take it. Of course that would entail that everything would have to be in place, which includes finances and such because that was a major problem before and it is also a major factor in getting the transplant. It is so unfair how the green dollar dictates my life! Sometimes I wonder what life would be like on earth if money didn’t exist.
I desperately need help because my GI system is so incredibly horrible on top of all the pain I am already in all throughout my body because of the horrendous reflex sympathetic dystrophy. Due to my GI tract being completely paralyzed, I cannot eat or drink anything, nothing moves, and I can’t even go to the bathroom. In addition, the doctors are so worried also because since I am not going to the bathroom, I am not expelling my meds and other wastes and therefore, I am having all these poisonous toxins build up inside of me. This can be causing me great harm as well.
I really need help because I literally can’t breathe or walk. Not only does the stomach pains prevent me from breathing because it causes aspiration and such, but it also causes severe pain. You know when you go running and you get a muscle spasm or kink in the side? Well I get it throughout my stomach and it feels like my entire stomach is stitched up.
After speaking to my doctors though, they want me down at Hopkins as soon as possible because of everything that is occurring. They are thinking that until the autonomic dysfunction is under control, we are really going to be facing a real battle because that is our greatest enemy. So, we are hoping that we will be able to somehow work on that aspect and be able to control that because without that under control… we don’t honestly know how the other things are going to happen like the tubes and such because the autonomic dysfunction literally causes disaster and havoc inside my body. There is nothing worse than the autonomic dysfunction. I literally hate it. I hate how I can’t regulate temperature. I hate how I can’t regulate liquids. I hate how I feel all prickly all the time if the autonomic dysfunction acts up. I just hate everything about it! It is just the worse.
As such, we were supposed to head down to Hopkins on January 3rd to see the doctor. Of course the holidays cause a huge complication in the sense that nobody is around because doctors always take their vacation during that time. So… since it is now Christmas time and New Years, I have to wait until afterwards so that they will see me. Of course it will be my wonderful dad who will be going with me. I love my dad. I don’t know what I would do without him. I am so fortunate to have him in my life because if it wasn’t for him, I would definitely not be here today. He is not only my dad, but my best friend and hero. He is really the one who keeps me going. I really wish my mom could come too, but unfortunately, someone has to stay behind to take care of everything like the business and house as much as possible. Plus… we can’t afford for everyone to go. Even though I would love to have my mom though with me, as long as I have my dad… that is enough for me! At least I will get to spend the holidays with both of them hopefully!
However, I did receive a phone call tonight though to be honest with you from my doctor. The doctor called and told me that the head of the hospital wants me to come to Hopkins on Monday and meet with me. He is one of tee best doctors around. However, due to the fact that it is already Friday and Monday is basically 2 days away, it is literally impossible to arrange. Plus, I have no funds on hand to go as of now, so it is really impossible to go. I am going to have to call in the morning to rearrange the date because of this. It’s a shame because I am really suffering too. Yet, I can’t go if there are no funds. We were even hoping that we would be able to get enough funds by Jan. 3rd. There is no way we could manage by Monday!
I can’t wait to see this new doctor that my current doctor scheduled me an appointment with. He was recruited from Stanford University, where he was chief of gastroenterology for five years. So… he is from my other hospital and even knows my head doctor over there too. So that is a really good thing. Dr. Pasricha is an expert in neurogastroenterology and leading the establishment of the Johns Hopkins Center for Neurogastroenterology. He deals with disorders affecting the nerves and muscles of the stomach causing problems with gastrointestinal motility and pain. Since Dr. Pasricha is supposed to be one of the top of the fields, I am hoping he can help. I only hope I can see him as soon as possible because I am suffering so much.
I also need surgery again for my jaw. Even though I had surgery about 2 weeks ago, I need to have it again because there bone went again. When I came out of surgery last time, I felt something ‘funny’ going on and I could have sworn that I felt a hole. I feel everything because I am so hypersensitive… so I can feel the most microscopic thing. Therefore, I felt it even before it occurred, even though I had just came out of surgery and the surgeons couldn’t really ‘see’ it. They did do work in that area because it was causing problems, but obviously they didn’t do enough because they didn’t see these microscopic occurrences.
Anyway… one week out and I was like “uh oh” … there it all went! My bones collapsed again and I have a gaping hole again!! Went to the surgeon and they need to get me in ASAP to have it done. This only means more money… money I can’t afford and don’t know how I am going to get because he is of course not on my insurance plan. I already got his bill from the last surgery and it is a lot despite the fact that I still have to pay the copayments as well to the hospital and such. I have like at least a $100 copayment for each thing I underwent… procedure, test, each day I stayed, etc. It never ends.
So now that we have to go back into the hospital for more surgery… not only am I upset because I have to be operated again on, have to spend more time in the hospital, going to feel more pain and everything, etc., but I keep hearing ca ching ca ching because I know that this is going to be more money on top of all that money that I just already received a bill for and didn’t even have in the first place. I really need to raise money, but unfortunately no matter how hard I try… I keep failing. I really need the media’s attention, but you know the saying… “It doesn’t matter what you know… it is who you know” and unfortunately… I don’t know ANYONE! So… I am on my own two feet!!
I also have a ketamine coma on Wednesday. Not only do I have a coma on that day, which I am looking forward to because it is the only time I get a break from my illness, but I am also going to be getting an injection hopefully so I can start a new medication. The surgeon for my jaw wants to put me on a new medication (Torredol) but unfortunately, I need to have the first dose by IV in order for it to work as well as it can. So I can’t wait for that to happen because my mouth and jaw are killing me as well.
In the meantime, I am trying to get another hyperbaric oxygen treatment. I am hoping to go today because it does relieve some of the distension and pain in my abdomen. Even though it is incredibly expensive… It is the only relief I get in terms of my stomach.
So so hopefully all will work out because I am really suffering. I am literally climbing the walls with everything. I never have been suffering so much. I am not just suffering physically, but emotionally as well. I am tired of being in pain and tired of hurting… both physically and emotionally. I am tired of watching my life pass me by and tired of watching all that I accomplished get wasted. I really feel like a “nobody!” So I haven’t really been doing well overall.
On a better note… I have been reading such a wonderful book that I really recommend. It is called “The First Phone Call From Heaven,” which is written by Mitch Albom.
Well… I am going to get going. Please help me have a happy holiday. If you can please spread the word of my website, I would really appreciate it. Anything and everything is needed and will be appreciated! Any amount, no matter how small, helps!!!
Sorry if this message was a bit mumble jumble. It is just that I haven’t been feeling well tonight. I will write more when I know more and hopefully clarify some of this up that is hard to grasp right now.