It is Friday and the end of the week! Some might say TGIF but for me I can’t really say that because one day is just the same as the next. I can’t wait for the day that I get back my life and I am back to normal. I am only hoping and praying that through the support, encouragement, prayers, and donations of all of you that a cure will be reached soon and I will be able to receive the very lifesaving treatment that I need to live the life that I was robbed. I really want to make a difference in the world and make a everlasting mark. I really want to be able to have a husband, kids, and become a doctor so that I can cure other people and they don’t have to suffer the same type of fate I have had to endure.
But in the meantime I have only been suffering and getting worse. I am rapidly deteriorating, and I desperately need help. I am so thankful for all that have been supporting me, encouraging me, sending me their prayers, and giving me donations. Without the help of all of you… I would definitely not have made it this far. The road… especially lately has been filled with many obstacles and has been extremely difficult to travel. But it has been because of all of you that have gotten me over humps in the road and kept me going. Even when I think that there really is no light at the end of the tunnel, I think of all of you that are behind me, and it really makes a huge difference. I can’t tell you how much it means to me to know that I have your backing!!!
In the meantime, I really wanted to update you on all that has been happening. I am really excited that my video has made over 1000 views. I really never thought that would happen. Even though I didn’t receive as many donations as I would have liked and needed for treatments, it was really nice to know that so many people have viewed my video. Even if I can’t get ‘well’ … I at least want others to know what I am going through. I want others to become aware of an illness that so little is known about. I hope that this video brought some awareness to all that I am going through so that others that are suffering similar situations don’t have to suffer the same fate as me. I really need help and unfortunately I am only one person in a huge world. The more people that know about my illness and can spread the video, the more awareness that can be brought about and the more attention it can get. I am hoping that perhaps the media can receive the video and post it so that it can definitely receive a lot of attention. Not only am I hoping to raise donations so that I can receive the very lifesaving treatment that I need to live, but I want others to know how in an instant the very things that you take for granted can be taken away from you. I want to show you that ‘health is wealth’ and that as long as you have your ‘health’ you have everything. I also want to show others that even though things look really bad… you NEVER give up. As Jesse Jackson once said, “If you fall behind, run faster. Never give up, never surrender, and rise up against the odds.” Never let your head hang down. Never give up and sit down and grieve. Find another way.
I am so desperate to get well. I really want to get well because there is so many things that I dream to do. I was robbed of so much and been forced to give up everything because of my illness. I lost my friends, the ability to walk, the ability to eat, the ability to go out, the ability to have fun, etc. I was always a fun person who did everything and anything. I loved to go outdoors and go to waterparks, figure skate, play the violin, hang out with friends, go to school, etc. and I can’t wait to do all that again. I have such a huge bucket list to do when I get well and it keeps getting longer and longer. There is no way that I am not going to accomplish all the stuff on that list before I go!
But the truth is that I am rapidly deteriorating and getting worse. I have been in so much pain lately… much more than usual lately. I honestly don’t know how much more I can take, but I keep pushing on even though the pain is unrelenting. I keep asking my parents to “please do something” even though I know that they would if they could. The truth of the matter is though I have been doing some cleaning up of my room because just in case something should happen… I don’t want my parents to be left with doing everything. I am not giving up by any means, but I know that something is happening and I know that I am getting worse. I know that unless something radical isn’t done or a miracle doesn’t happen soon, I know that I am really running out of time. I feel like a time bomb just waiting to go off. But like I said… I am still ticking away and defying medical odds. After all, doctors never even thought that I would have made it this long. They even are shocked that I am still alive because by medical standards and the numbers that I am… I really shouldn’t be alive. But I tell them all the time that I am going to be here FOREVER!!
The past couple of days have been really disastrous. I have been in such severe pain and been so hypersensitive that I haven’t even been able to tolerate the slightest amount of clothing on my body, especially from the waist down. I had a blood patch transfusion performed on Wednesday and I don’t know if my body is reacting to it, but everything is just so much worse.
It is very possible on top of everything else that my body is reacting to the blood patch transfusion because it was very ‘traumatic’ to my body and my body really gets stirred up whenever anything ‘traumatic’ happens to my body. For those that don’t know what a Blood Patch Transfusion is, a ‘blood patch’ is when you have blood taken from you and then given a transfusion except it isn’t in your arm. Instead, the transfusion goes directly into the epidural space of the spinal cord in order to close the hole that is occurring in the dura mater of the spinal cord. There’s cerebral spinal fluid leaking out and as a result, the brain drops instead of being suspended in all that fluid. It’s kinda like when a tire goes flat. Not only is it extremely painful to have this hole and the cerebral spinal fluid leaking, but also it is extremely painful to have this blood patch transfusion performed. You definitely don’t want it done. Even though they kinda knock you out when they do it… It’s mad painful especially upon awakening. Never do I want it again. I get shivers just thinking about it. Hope this info helps as to what a ‘blood patch’ is. Let me know if more questions.
Like I said though, it was so incredibly painful. It hurt so badly. They think it hurt me even worse because my nerve endings are so much more “on edge” and so much more “hypersensitive” than the normal person. However, I have had some really bad complications and reactions towards this transfusion, as I have a headache still, I keep having hot flashes, and I am extremely weak. My autonomic dysfunction is acting up so much lately especially since the transfusion and I keep getting ‘hot flashes’. However, due to my disease and autonomic dysfunction, I cannot sweat because I lost that ability and therefore it only makes things worse. In addition, I also ended up getting a fever of 101 from the transfusion.
The doctor was really worried about all that was happening with me. We spent the last two days back and forth on the phone with the doctor. You know the doctor is really nervous when he gives you his private cell number and texts you constantly during the day and night… even up to midnight to see what is going on. He really is an amazing and caring doctor and I am so thankful for all that he has done. He was really concerned about what was happening and fearful that I could be getting Meningitis because I was definitely at risk with all that I have been through and was scared that I was getting it with all the symptoms that I was having.
I had to go back to the doctor today because they were going to redo the blood patch transfusion because they didn’t think it ‘took’ the way it should. I was really going crazy because I knew how painful the first one was. I was so scared to get it done again and really didn’t want it done. However, when we went to the doctor, the doctor decided to place me into a ketamine coma and give me a very high infusion of ketamine to see if he could ‘quiet’ down my body. He was also hoping that perhaps he could ‘reboot’ my body with the ketamine like a computer gets rebooted. Ketamine is a special drug because it has the ability to ‘reboot’ the body and start it up from scratch again. It really is amazing. That is one of the reason why I need to go out-of-the country to have that really intensive ketamine coma. Since my disease is so bad, I really need a high dose of ketamine that is not FDA approved in the United States to reboot my entire body. They are thinking and hoping that by giving me this really high dose, it will start my entire body from scratch and I will be ‘cured’ and put into remission. It is of course very risky, as they literally put you completely on life-support. They literally have to shut down your entire body and put you completely on machines, which includes heart and lung. You are fully intubated this whole entire time because your body is basically ‘shut down.’ But hopefully after the extremely high dose of ketamine, the body is cured of the disease when it is rebooted and taken off the machines. I really hope that I can have this coma, but it is just so incredibly expensive. It would cost over $100,000 and it is definitely not covered by insurance.
The doctor put me into the ketamine coma in a way of hoping it would help all that was occurring in me because I was not only suffering from the cerebral spinal fluid leaking, but I was in enormous pain from the leakage as well as overall pain from the way my body was reacting toe everything that was occurring. He said that we would try the ketamine coma and then do the “blood patch” afterwards, if needed. The doctor was also hesitant to do the blood patch because of the fever I was having. He really didn’t want to go back into my spine when I was having a fever because he didn’t want to do more damage. So like I said… he was hoping that it might be able to be avoided by having the ketamine coma. However, I was in so much more pain than normal that they even had to give me extra ketamine in order to put me out. That showed that my body was all wound up.
Unfortunately even though the ketamine coma did help while I was “under”, it didn’t last. All the symptoms are back and I am in so much pain. My body is really killing me and I am literally climbing the walls. The doctor thinks that besides the cerebral spinal fluid leaking, he thinks that I am also having a reaction to the actual surgery that I had last week, which was when I went for the trial for the pump. He thinks that I am having a severe irritation to the duramorph injection that I was given on top of everything else.
Since I am really suffering, the doctor is going to call in another drug to help with the pain. I really am climbing the walls and have maxed out on all my drugs. After speaking to the doctor tonight, he is going to give me Vicodin on top of all the other drugs that I am already taking. How many drugs is he going to put me on? After all, I already take Methadone, Morphine, Dilaudid, Nucynta, Ketamine, etc. everyday. I feel like a little ‘druggie!’ You know how easily I would fail a drug test if I was tested?
In the meantime, I also had my bloods taken today and they aren’t good either. My bloods are really bad, which is not anything new. Actually I was hoping that they would have been better than they were because of all the IVs I have been given and the vitamins that were in the IVs too. But I guess even with all that I was given, it still wasn’t enough. My heart bloods are still way down and I can easily suffer from an arrhythmia and cardiac arrest.
I also found out that my the “mean corpuscular hemoglobin concentration” is very low. The “Mean Corpuscular Hemoglobin Concentration” is a measure of the concentration of hemoglobin in a given volume of packed red blood cells. A low count in this occurs in iron deficiency anemia because hypochromic red cells are produced as a result of the lack of iron to support hemoglobin synthesis. So this could be the reason why I am weaker than usual.
I have also found out that my APPT is extremely elevated. This means that I am having an extremely difficult time clotting. Therefore, this could be the reason why I am leaking cerebral spinal fluid because I can’t form a clot in the dura mater to close the hole. This could also be the reason why the first transfusion didn’t take because like I said, I am having a hard time ‘clotting.’ So… this is just another problem to add to all my others.
So… things have not really been good. The doctors really want me to go for another Hyperbaric Oxygen Chamber Treatment but unfortunately we cannot afford it. Even though we did start to see some improvements with the treatments, it is too expensive and therefore we cannot afford to continue it. It is really a shame because it really did help. Not only did it make my body turn normal coloration (so it meant that oxygen was getting to all my parts and it could try to avoid amputation because it was getting to all the dying tissues), but also it was helping my GI tract because I was getting hungry and everything from it. It was also helping the bloating to a point as well. It was also giving me more energy. It was helping my immune system. To think… it was only the beginning and of course it could have been so much more helpful because they said that I would need at least 40 treatments. However, like I said before… it is a shame that I can’t continue them because of how expensive they are. It stinks that insurance just doesn’t cover it.
Well… I guess that appears to be it. I will keep you posted on what is going to happen. I am supposed to be seeing the neurosurgeon on Wednesday to further discuss the brain surgery that he wants to do. They are proposing putting a machine in my brain, but I will tell you more when I know the exact details on Wednesday.
Like I said before, things are really bad and the doctors are thinking about doing another blood patch transfusion. They are hoping that I would be able to hold off until Tuesday because of the holiday and everything. But I will keep you posted.
Oh yeah… I forgot to tell you that I got the call from Georgetown Hospital to go for the testing for the multivisceral transplant surgery. I need a new stomach, small and large intestine, pancreas and liver. So we are headed down there September 16th for some testing. It is only going to be a brief visit, but they want to do some more testing.
In the meantime, I have been trying to keep myself busy with some reading. I have been reading James Patterson’s new book called “Second Honeymoon!” I am trying to keep as many brain cells alive as possible!! I have also been watching a great series on Netflix called “Orange is the New Black.” It really is a great series. After all, there isn’t really anything on TV lately because it is the end of the summer. Just got to hang in there a few more weeks because by the end of September all the Fall shows should be premiering again. You know things are bad when even the TALK shows are repeats.
Well… thanks again for all your support, prayers, and encouragement. I am still in desperate need of plenty of donations because I need to receive treatment to save my life. If you have any suggestions on how to receive some donations, I would really appreciate it. Please continue to spread my video at http://youtu.be/tRyEp1V6IGs because the more people that knows about it the more chances I have of receiving donations!! Remember… “When life gets you down, you know what you got to do? Just keep swimming!”