Just wanted to update you on all that is happening since so much has been happening. I am honestly really upset and have been doing a lot of crying because everything comes down to the green dollar. My life seems to depend on that stupid paper, and it appears that money is more important than saving a person’s life. I have had a particular hard day today because we have been hitting one roadblock after another after another today. It has been horrible.
First off though, I want to thank everyone for his or her prayers and encouragement. It has been a long and difficult journey, and I definitely would not have made it this far if it wasn’t for you. You really have made a huge difference. I am like the “Energizer Battery” and I keep going and going, but it is you that keep recharging my batteries. Even though I am continuing to suffer and the pain is horrible, I am continuing to push forward… hoping for a day where I will be able to regain my life. I am only able to do this because I have the support of you.
I can’t tell you how thankful I am for everyone’s support. The people that have spread awareness of my website and video are amazing. I can’t tell you how much I appreciate it. I desperately need help and it appears that the only way that this is going to happen is if attention is brought to my condition… and what better way is there than word of mouth. I am so thankful for a dear friend that made this amazing video on YouTube and who has really come to the plate to bat for me. She really is amazing. I really can’t tell her how thankful I am and how much she really has made a huge difference in my life. Even if I can’t necessarily make a difference in my own life, perhaps I can at least gain awareness for this illness since there isn’t much known about it and people in the future won’t have to suffer as much. I can only hope that no one will suffer the same torture that I have been suffering. It is Hell!
Anyway… like I said before… I desperately need help. I am rapidly deteriorating and it appears that I am only hitting one roadblock after another. These few days have really been hectic and I really feel like I am being constantly knocked down. It is getting harder and harder to get back up, but knowing I have you behind me is really the reason why I am still trying to get back up. Let me tell you all that has been happening. I don’t know how coherent this all will be or how mumbo jumbo it might because I am on a lot of meds, in a lot of pain, and have a lot to say. However, I don’t really have a lot of time to write because I am not feeling well… so I am going to try to keep this as brief and concise as possible.
First of all, I think I should let you know that I am going for surgery tomorrow morning. Well actually it will be later today considering it is after midnight. Due to the complications that have occurred because of the last surgery when I had the “trial,” I now have to have a surgery tomorrow that will entail getting a blood patch surgery and a transfusion. I have been suffering from the worst headaches and I have cerebral spinal fluid leaking out of my spine from the past surgery. The doctors were hoping that it might heal on its own, but unfortunately it has not. In fact, it has only gotten worse. The doctors have put me on potent medications like Fiorcet and had me on bed rest so that I lay flat, but despite it all… nothing has worked. I am continuing to leak cerebral spinal fluid and suffer from a massive headache every time I raise my head. Therefore, I need to have that blood patch surgery and transfusion in the morning. It also forced the second part of the surgery, which is was the major surgery that entailed implanting the permanent pumps, to be canceled because they can’t do surgery to do this when I am leaking cerebral spinal fluid like I am.
So I am headed to have the blood patch transfusion surgery tomorrow morning. I really hope that it works because I really have been suffering. Despite all the meds, bed rest, hyperbaric oxygen treatments, etc. nothing has really stopped the cerebral spinal fluid from stopping. So I will have this surgery because it is needed to close the hole that is occurring in the spinal cord as a result of the previous surgery that I had for the trial for the pumps. The doctor will take my blood and actually inject it into my epidural space of my spine. Hopefully, it will form a ‘patch’ and it will stop the cerebral spinal fluid from leaking. The resulting clot then ‘patches’ the meningeal leak. I really hope that this works because I can’t take the pain anymore. I can’t sit up or anything because of the huge headache. I can’t even go to the bathroom because it is also causing my spine to go into spasms and every time I go to the bathroom, I am suffering from intense spasms and pain in my lower spine.
Since I will be undergoing this blood patch transfusion surgery, I will also have a ketamine coma tomorrow as well. They are going to have to put me out in order to do it, so they are going to give me ketamine as well too. Ketamine is definitely needed during the procedure because it is the only drug that prevents the disease from spreading. The disease is already spreading like a wildflower and since it spreads through trauma and surgery, we can’t afford for it to spread again during this surgery. So we are hoping that the ketamine will keep it at “bay”, if you know what I mean. At least since I am getting put into the ketamine coma, I will have one day of relief because that is the only time I get a vacation from my pain.
I also want to let you know that unfortunately we had to stop the hyperbaric oxygen treatments. Even though the doctors really want me to go for them because it has been shown to have benefits, it is extremely costly and unfortunately, we cannot afford them. I have gone for a couple of treatments and have seen firsthand that the hyperbaric oxygen does have the ability to help in certain aspects. It might not cure anything, but it certainly does help. The doctors definitely want me to go for it because it has been shown to help me heal better after surgery, prepare me better for surgery, and has shown other benefits as well. The doctors are also worried about me losing my limbs and such because I am turning colors as a result of no oxygen getting to my limbs and organs (and therefore amputation is a possibility down the line), and they were hoping that the hyperbaric oxygen could restore some of the oxygen and revive the tissue that was considered ‘dead’! They were also hoping to have it help with my GI issues because I have severe gastroparesis and a lot of nerves throughout my entire body are paralyzed and ‘dead’. It has been shown that hyperbaric oxygen can actually have the potential to rejuvenate nerves and possibly help me.
I must say that I definitely have seen a difference when I am under a ‘dive’ in hyperbaric oxygen. When I am in the dive and in 100% oxygen, the coloration of my limbs comes somewhat to normal coloration. That is really good because it means that oxygen is going into the tissue that normally would not get oxygen otherwise. It really is saving my tissues and organs. I have also noticed that my stomach has also felt a little bit better and I am not distended as much. One of the effects of the hyperbaric oxygen is being hungry because it stimulates metabolism and such. I can honestly say that even though I only had a few treatments, I have really had positive effects because I could feel a difference in that area as well. All in all… I really think that the hyperbaric oxygen could have a positive effect on my health and be really beneficial on me. However, I just found out that it is going to have to stop, which is something that really tears at me heart.
I am really upset because I learned today that I am going to have to stop the hyperbaric oxygen treatments. Even though I have only had a few treatments, I have noticed a few subtle differences already. However, they say that in order to really notice differences, I will need at least 40 treatments. In fact, some people even go into the chambers every day… even twice a day. However, I cannot afford these treatments anymore and even though I was given these treatments as a “gift,” I will have to stop them. They gave me 5 treatments to see if it made a difference and what would happen, but now that I am seeing differences, it really stinks that I am going to have to stop it because I don’t have the money to keep on going. It would literally cost me about $1000 a week, which is something that I don’t have. I feel like everything else that it was just a ‘tease.’ I hate when there is something that I see that can potentially help me and then it is pulled out from under my feet. I should have never gone for it to begin with. It really hurts more than ever to know that there is something out there that can help you, but you can’t get it because you can’t afford it. Not many things actually help my illness and the stuff that does is so not affordable because they are so incredibly expensive and insurance of course doesn’t cover it. So of course that leaves me without it and continuing to suffer and deteriorate. This is my life on the line and I am really running out of time!
In addition, we have been having problems for the implant for the permanent pumps. Even though I went for the trial this past week and had endured all those complications, we are having a hard time putting the permanent pumps into me because we need someone to ‘fill’ the pumps. I really need these pumps because they think that it will benefit me in various ways. They think that it will allow me to better absorb the medicine since I can’t absorb medication or food because of the extreme gastroparesis and such (the pump will allow the medication to be deposited directly into the intrathecal space in the spinal cord which is much more effective and don’t have to first wait for it to be first absorbed through the digestive system and into the bloodstream), the pump will allow the meds to be more potent because they are being deposited directly into the intrathecal space of the spinal cord, and they are hoping that I will be able to get additional drugs that are not available in pill form that could possibly benefit me. Since I am having an extremely hard time swallowing because of my illness and take over 50 pills daily, they are hoping that this pump would make a huge difference too because it would cut down on the amount of medication that I would have to swallow. I literally eat pills for breakfast, lunch, dinner, etc. and unfortunately they don’t absorb the way they should. I can literally take the pills and when I vomit over 12 hours later, I can throw them back up and they are not dissolved. So what good are they doing me? So hopefully the pumps would have helped all of that.
However, the pumps are not the easiest of answers. It took awhile to find a surgeon that would be able to implant the pumps into me because I am so thin. The pumps are really big and I am so small because I am only weighing in the 60s. The doctors are so worried that I am not only going to suffer a complication from the actual surgery, but they are worried about the complication of the skin being eroded because there is no padding or anything. Therefore, when we finally found a surgeon to do the pump, there was going to be a plastic surgeon in the room as well so that he could possibly help build a pocket in my abdomen and better position the pump so that the pumps can be better placed in me. You know?
I thought that everything was taken care of now that we had the surgeon and plastic surgeon to put the implant in. However, they are really worried about the doctor who will fill the pump afterwards. Not many doctors are willing to fill the pumps afterwards and those that do fill pumps will only fill the pumps that they put in. I do currently have a doctor that will fill the pump, but I am really worrying what will happen when this doctor retires or something because I will have no one to fill it then. There was an oversight today and we had to find someone besides my regular doctor to fill the pump and when I made additional phone calls to fill the pump, I found that it was extremely difficult to find someone to fill it. I called private doctors as well as hospitals and the truth is that most doctors won’t fill it or if they will… they will only fill the pumps that they put in themselves and therefore, they won’t be willing to fill mine because I would be having my pump put into me by my current neurosurgeon. So after talking to all these doctors and everything, I was really wondering if it really was a good idea to get these pumps after all because even if it might help by making me more comfortable and allowing me to have additional pain meds and such, it might cause more trouble than anything because of the complications that it will cause since I have no ‘padding’ as well as the complications of getting it filled because after my regular doctor retires, I will have no one really to fill it. You know?
Therefore, we are thinking about just proceeding straight into the brain surgery. Originally we were going to go through with the pumps and then proceed with the brain surgery afterwards. However, after careful thinking about the pumps and how they might be more of a problem than anything else, we are thinking of just going directly into the brain surgery. I am not going to go into all the details until we have it all planned, but to put it shortly… they are literally going to put a machine and electrodes in my brain to help try to buy me time. Of course it is very risky and dangerous. We will know more from the surgeon tomorrow, so I will of course let you know then what the plan is.
I am really upset because I really feel like everything that could possibly help me is so unobtainable because we don’t have the money. It is like being teased with something and there is nothing worse than knowing that there is something out there that can help you and you can’t have it and as a result, you are going to suffer and die. You can’t imagine that feeling. I just wish that there were something that can be done. I hate being a burden to my family because they have given up so much because of me. My family has literally gone into the poorhouse because of me and to be honest with you, they have literally given up their lives because of me. We have stacks and stacks of bills and even the mortgage is getting harder and harder to pay. I am really scared that we are going to lose our house and if we ever do… I would never forgive myself because all the money is going towards me.
My parents would do anything to get me well, but it is so unfair that they had to give up their lives for me. They should be at the point in their lives that they should be resting and having the time of their lives. However, they are working harder than ever and not even enjoying themselves. They just turned 60 and they are no youngsters. I am so worried that something is going to happen to them because they work basically every day. My dad works basically 7 days a week and is up at 3 AM, out of the house by 4 AM and not home until 7 PM. It isn’t like he has a desk job either, but his job is all physical work and driving. I look at pictures that have been taken just in the past 6 months and I can see how much they have aged. It really scares me because I really don’t want anything to happen to them. They aren’t so young and they can’t be working so hard. If anything ever happened to them, I would never forgive myself.
Yet… they work so hard and give up so much so that they could try to provide as much as they can for me, which in comparison to the amount of treatment that I need is like basically nothing. They don’t go out to eat, they don’t buy themselves anything anymore, we haven’t been on a family vacation in like over 8 years, and we don’t even do anything for fun anymore. It is really horrible! I need far more than they can ever give me because my treatment is so expensive and that is why I need the help of others. Without the help of others, I will no way be able to receive the lifesaving treatment I desperately need. I hate to sound like a beggar and a crier because I was never like that. However, I am only 31 years old and I don’t want to die. I have so much to live for and I really want my life back.
So… this is where we stand now! I am now waiting to hear what the next step is. Dad is freaking out because dad is extremely nervous about the next step because the next step has never been so dangerous. We have exhausted all the treatments that have not been as dangerous as the ones we are now attempting and dad always hoped it would never get to this point. Dad is so scared that I am not going to make it through the brain surgery or that very intensive ketamine coma that I really need that is given outside the country or that multivisceral organ transplant. Yet, it has come down to the point that I really need them because they are my only chances. My dad would do anything to get me well, but he is really skeptical about having me go for these procedures because of how risky they are. He is soooo afraid that something is going to happen to me in the process. I can’t blame him. But I told him that it comes to a point that we have to take a huge risk like this because it scares me more to continue to live like this.
So tomorrow will be a big day. Like I said before, I have the blood patch transfusion and ketamine, and I will hopefully know more about where I am heading… whether it is for the pump surgery or the brain surgery. Of course I will keep you posted. I really hope that it can be done as soon as possible because I am really suffering. But with all the holidays coming up such as Labor Day and the Jewish Holidays… I hope that it will all work out.
I am also waiting to hear from GEORGETOWN because I will be heading there shortly for some more testing for the multivisceral organ transplant, as I need a new stomach, small and large intestine, liver and pancreas. It is really dangerous and we are really nervous about it because the survival rate isn’t too good. However, this honestly is the only real chance of overcoming my GI problems. It is basically getting a new system! I am getting everything under the hood replaced except the “engine”!! LOL. Everything is in the final stages to be matched for a transplant.
Like I said before, there is a new video up on YouTube about me. It is at http://youtu.be/tRyEp1V6IGs Please continue to share it because it already has over 700 views. I am hoping to get at least 1000 views. That would really be awesome if that would occur. I really need as much help as I can get. I need as much support, donations, and prayers and I can receive. Even if I can’t be helped… at least let me bring awareness to all that is happening so that people in the future don’t have to suffer the same fate that I am. I really want to make an everlasting mark in the world and if this is the way that I have to do it… to let others know about this illness and let others realize that something as horrendous as this disease can exist, then so be it. I also want people to learn from reading my story that when you have your ‘health’… you have everything and also that you should appreciate everything that you have because in a heartbeat it could be taken away. Never did I think that my life was going to end up like this. I also want to show people that even when life is hard and the oceans look impossible to travel, you just gotta keep swimming!!
Well… thanks again for all your support!