Sorry I haven’t written in quite some time, but I have not been feeling well. To be quite honest, I am really not doing well and really deteriorating. As time is proceeding, I am getting weaker by the day and it is getting even harder to make it through a day or night. It takes me quite a while now to build up the energy to do something so even simple tasks like writing my blog is getting too difficult to do and that is why I haven’t really written as frequently as I once did. I desperately need treatment and need it NOW, but unfortunately we can’t afford it and we are in extreme need of the help of others so that I can get the lifesaving treatment that I need.
I figured that since I haven’t written in a while, I would write and update you on all that has been happening especially since the year is coming to a close and I am only hoping that 2015 will be better. Plus, I am in need of so much help that I am hoping that through this blog, you might realize how much help I really do require to stay alive and therefore, perhaps maybe you might be able to help in someway… whether it is by donating, spreading the word of my website so that others can know about it and be able to donate, say a prayer, give some fundraising ideas, etc. I am really hoping that something can be done because without any help, I am not going to make it much longer.
As it is, we had to cancel the lifesaving surgery that I was scheduled to receive this upcoming week at the Cleveland Clinic. Due to insufficient funds, we had to cancel and it was something that we really couldn’t afford to do because I am literally hanging on by a “thread” and that thread is snapping already. We did reschedule it to a later date, but even the doctors are skeptical about how much longer I can hang on and if I can honestly make it to even another month for when the surgeries are now scheduled. In my state right now… even day counts and makes a difference.
I desperately needed to get to Cleveland Clinic this week because I was supposed to have heart surgery as well as have my colon removed. I was supposed to have heart surgery not only to remove the calcium calcifications in my coronary artery, but also to put lines and catheters into my heart to serve as a port, emergency access, a place I can receive TPN, etc.
This heart surgery was very important because I desperately needed the lines placed in me. Not only did I need it for the massive surgery to remove the colon, which would follow because it would be an “emergency access” port into me since it was a central line and go straight to my heart, but it would also have other purposes as well. With this port, I would be able to give given medication and would be a huge relief because of the amount of medications that I need to take and because I can’t absorb the medications as they need to be either since my either GI system is basically dead and doesn’t function. If given meds through this access, they would be far more potent and would hopefully help me better both in pain and in general. In addition, as I take so many pills daily that according to docs would “kill a horse” and a 300-pound man would never be able to take because it would even kill them, and it is extremely difficult for me to get them down. I have to take literally over 50 pills daily and with this port I would not have to worry about swallowing any of them anymore. Even the injections that I need to keep poking myself for wouldn’t have to happen anymore, as this port would prevent me from receiving injections and being constantly stuck with needles to give me both medication and draw my blood and everything.
Finally, one of the major reasons I need this port is for TPN. As I only weigh in the 60s, I have no ‘reserves’ to help me fight anything should I get sick and for when I undergo surgery. I definitely would need this to help me ‘heal’ especially from major surgeries that I will be undergoing.
So everything is just at a standstill right now because we have no funds to send me. Not only do I need help even paying for my medical treatments at home, and medications and everything, but there is absolutely no way we could pull off this trip. I would need to spend at about 6-7 weeks in Cleveland, which would amount to a lot of money. So we are just praying that help will come and arrive in time for February because that is when the surgeries are rescheduled. We just hope I will make it that long as well.
Whereas it was hoped that I would be going for the surgeries this month and this way I would be starting the New Year as hopefully a brand new person, it is obviously not going to happen. Now I am scheduled to leave February 2nd and I have heart surgery on the 3rd and then my colon is being removed on the 18th. I will literally be going to Cleveland as an extremely SICK 32 year old, but hopefully coming back as a healthy 33-year old because I will be celebrating my 33rd birthday there. What a way of celebrating your birthday, right? But hopefully there will definitely be something to celebrate this year because hopefully we will be celebrating receiving the lifesaving treatment that I need and the start of a brand new healthy life. That would be the best birthday gift of them all.
Technically speaking it is kind of better that I have the surgery in February rather than now in December because there will be more days being able to be dedicated to the TPN than if I went now. Since I suffer from this painful and rare debilitating illness, I can’t tolerate anything ‘foreign’ in me and therefore, we don’t know how my body is going to be able to tolerate these lines going into my heart. I can’t even tolerate IVs. In order for me to get my colon out and have that massive surgery, I need to have at least 10 days of TPN. If I went this month, we would have to use every single day and wouldn’t be able to miss one day acclimating to the tubes. Yet, now that I am going in February, we will have more time to go ‘slowly’ and hopefully get my body to work with us. As it is, they will be having me heavily induced on ketamine during this time so hopefully I won’t be bothered by the central lines. I am so malnourished and deprived according to the doctors that we are going to need those extra days to go slowly. So in a way it is better.
However, even though we will be going to Cleveland for the massive surgeries starting February 2nd, we still are planning on making a trip to Cleveland on January 6th for a few days. It is important that we do so because we have to meet with some doctors and go over a few things. We need to see at this time the heart doctor, endocrine doctor, GI surgeon, neurological doctor, etc. It is extremely important to see the neurological doctor because he is one of the very few doctors in the world that is knowledgeable about my illness and has actually done research on it as well. This way the team will know exactly how to care for me during this operation because I cannot be treated like normal patient and even the slightest surgery, needle stick, tube placement, etc. will stir up my disease, cause havoc on me and my autonomic dysfunction, and cause my illness to spread.
So that is another reason why it is kinda better that we rescheduled to February as well. If we went for the operation during this month, I wouldn’t be able to see this neurological doctor prior because he was off on vacation this entire month. In fact he is actually ‘retired’ and not seeing patients at all. Yet, he is still willing to see “past” patients once a week and thankfully I have been a patient of his years ago and therefore, he is willing to see me as now too. So at least I will have the ability to see one of the best and knowledgeable doctors to talk to and we can know exactly what to do. After all, my illness is so horrendous and spreads like a wildflower that the slightest thing sets it off. I don’t wish this disease on my worst enemy. The pain is so intense and the autonomic dysfunction is just simply insane. One time in California, I had a tube placed in me by just going up my nose, and dragged into my intestines as way to see if they could feed me by bypassing the stomach. However, not only was this a failed procedure, but it stirred up the illness so badly that I immediately couldn’t talk. They immediately put me into the ICU and gave me high doses of ketamine and thankfully, it worked and I regained the ability to walk with the crutches.
So if I undergo anything, I always have to have ketamine. Not only is it used as a pain reliever, but also it is a way of suppressing my illness. That is why I need to get to Mexico and why I have the weekly daily coma. When I get those comas, it is the only time I am not suffering. But unfortunately I can’t live in them 24/7 and that is why I only wish that I could get to Mexico so that I can receive the ketamine coma that I really require that would “cure” me. Even though I do go for ketamine every week here, it is only a temporary relief and it no way would ‘cure’ me or anything. We pray that it is even helping a little in stopping the spread of the disease even though it is spreading like a wildflower, but we don’t know how much faster it would be spreading without the ketamine. Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer.
I really need the Mexico coma because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries. Since the amount of ketamine that I need is not FDA approved and the only place to receive it is in Mexico, but unfortunately I can’t get it done because of insufficient funds. They want over $100,000 for the surgery and it can easily be more than that. Yet ketamine is my only hope because it will hopefully ‘cure’ my underlying neurological condition, which is the basis of this condition. This ketamine procedure is very radical and rare, and I would be the 38th patient to undergo it. Yet, it is for the people that have exhausted all other options. During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.
So… in the meantime my body just continues to suffer like the domino theory and continues to shut down. This disease has caused so many other problems such as the severe gastroparesis, autonomic dysfurnction, etc. However, since my entire body is affected and it is causing all these other problems in my body, I need to do things that will buy me time and fight what this illness is doing to me. That is why I need to go to Cleveland Clinic.
In addition, now when I go to get my ketamine every week, I just don’t get ketamine. I have been getting vitamin bags too because of how sick I am and how we are trying to prevent me from getting and catching anything… even a cold! Everything is magnified for me and a simple cold is like getting the flu to me and can really literally kill me. Since I can’t take the FLU shot because the doctors have stated explicitly that could easily kill me and it is the time of the year where germs are prevalent because everyone is getting sick, I have to be extremely careful because I have no immune system and can catch everything. Even my dad has been joining me in taking the Vitamin bags. The doctor has been giving it to him because he can’t afford to get sick either. Not only can’t he afford to get sick because he needs to work and take care of me and everything, but he can’t get sick because then I can easily get sick since we live together.
You know… between getting constant IV when I go for ketamine and when I go for the surgeries to clean out my intestines every Friday, you would think that I wouldn’t be dehydrated. But due to my illness, I am extremely dehydrated. No matter what I do… I can’t quench my thirst. It is so annoying. I just can’t understand it.
This illness has taken a huge toll on my GI system and caused me to have severe gastroparesis. It has forced me to basically have my entire GI tract become dead, as nothing moves… from the esophagus to the stomach to the intestines. I literally can’t eat and I weigh only in the 60s. I am in need of a multivisceral transplant, which is a complete new GI system or in order words I need everything underneath the hood replaced except for the engine. With the multivisceral transplant, I would receive a new stomach, small and large intestine, pancreas, and liver. It is one of the most dangerous surgeries you can have and has been known to be the most dangerous transplant that you can have. It is extremely rare and in fact, only 6 hospitals in the country actually perform this transplant with Cleveland Clinic being one of them.
I need to have this transplant as soon as possible and especially get this colon removed because since nothing is passing through, everything (whether it is meds or food or anything else) is just sitting inside my body and rotting. The doctors are extremely worried that my intestines are going to rupture and that I am going to go into sepsis. As it is, my colon is spilling toxins into my bloodstream and these toxins are traveling in my bloodstream to all my organs and brain and poisoning them. So essentially I am also being poisoned to death.
I also need to have surgery done as soon as possible because intestines are literally twisting and having Intussusceptions. They are literally strangling themselves and it can be extremely fatal. I have had it for a while and whereas a regular person would need surgery immediately to correct this situation, I have been fortunate (if you want to call it that) to be able to live with it because my intestines are so dead and over dilated that they are so BIG and floppy. In fact, when the doctors go into my intestines, it literally takes a whole team to navigate my intestines because of how big and floppy they are. It will take them pushing on my stomach and holding my intestines in place. Just to get to my cecum, it can take over an hour, which is an extremely long time. Therefore, even though I have Intussusceptions and twists, I have been able to live with it. But now it has gotten to the point where I can’t live with it anymore and it is now VERY life threatening to me. I can’t even produce any stool anymore except for this mucous that is really weird.
So it is essential that I get to Cleveland Clinic because it is the only place that I can have these surgeries. It is the best place for me because not only do they have the best surgeons there and are ranked as one of the best hospitals in the country, but they are one of the very few hospitals that even do this transplant. Plus, as I stated before, I need to have ketamine whenever I have something done and that is one of the very few places that will keep me on the ketamine for that length of time so that I can hopefully be able to tolerate the TPN and get the surgeries that I need. So we just hope and pray that I will make it there and that we receive funds so that it will be able to happen.
In the meantime, I guess I just have to keep up with what I am doing to hold on. I have to go every Friday to the OR so that I have my intestines cleaned out. After all, I can’t afford to have these toxins build up in my colon because if my intestine ruptures, then I can easily go into sepsis and die. Plus, an added benefit of this surgery every Friday is that it makes me feel better because it helps to remove everything that is just ‘sitting’ in my body.
So that appears all that is happening with Cleveland. Speaking about cleaning out my intestines though, I was originally scheduled today for the doctor to clean out my esophagus as well. However, when I went to the hospital today to have it done, the doctor all of a sudden refused to do the esophagus and just wanted to do the intestines. I threw such a fit because I knew that something was stuck in my throat like a pill because as I said before… my entire GI system is paralyzed, which includes my esophagus. Therefore, nothing goes down and pills end up getting stuck in my esophagus. It is extremely painful because not only is something stuck in my esophagus, but it is absorbing in the esophagus rather than the stomach, which is extremely painful.
So I ended up fighting him on this procedure and the doctor said to me that if he did the procedure and there was nothing there, he would “never” do another procedure on me again. Even the anesthesiologist made a comment of how ‘persuasive’ I am. I didn’t care what they said because I knew that something was wrong and that I needed it. So I told the doctor that I don’t care what he says, I need him to do it.
But guess what? When I woke up in the recovery room, the first thing that I did was grab my chart to see what they found when they did the procedures and guess what? I was totally right. There were pills stuck in my esophagus that they had to remove. So who was right? I know my body and I knew that something was wrong. I couldn’t wait to see the doctor to rub it into his face because he was so adamant before about not doing it and how he wasn’t going to do another procedure if there was nothing there. Look who was right and who was wrong. He usually comes to see me and my dad after I wake up to explain everything that happened, and I was just waiting for him because I couldn’t wait to give him my piece of mind.
So that appears all that is happening right now. I am so sick and I desperately need help. Therefore, I really pray that someone will be able to help me and that you will help me pray that I will get well, as well as send out the link of my fundraising site so hopefully I will be able to raise enough money so that I can receive the lifesaving treatment that I desperately need. Even besides the surgeries in Cleveland, I need medications and even medical treatments here that we can’t afford. I hate to sound like a complainer or a beggar or anything, but we are basically ‘broke’ and can’t afford anything. I desperately want to live and unfortunately we don’t have anything to help me get well. It kills my parents that no matter how hard that they try… they just can’t get me the treatments that I need. The bills that have just snow blown out of proportion. Not only are my medical pills extremely high, but because we have been dedicating all our funds to paying for my health, which we can no longer do, we can no longer even afford our regular bills, which have also built up. We can’t even afford our mortgage and we can’t even afford food on our table. I never thought that I would be so grateful on the days that my mom is able to go food shopping and we are able to have food on the table. As of last year, we didn’t celebrate any holidays and I know that it will be the same this year.
So if you can please do anything, I would really really really appreciate it. I would appreciate any donation whatsoever because even $1 is one less dollar that we have to come up with. If you can think of any ideas for fundraising, I would really appreciate it. If you can spread the link and really help get my story out so I can get the help I need, I would really appreciate that as well. If you need to contact me, please feel free to do so by contacting me at firstname.lastname@example.org.
We are just totally out of funds and totally out of ideas. Dad thought possibly of even when I go to Cleveland that he would leave me there and travel back and forth. Despite the fact that it wouldn’t be the ideal situation and I wouldn’t want to be left alone in Cleveland, we thought that at least this way we would possibly ne able to save some money because would could save some days on the hotel stay because he would ne traveling home and we could also have him work as well some days because to not to have him work while I am in Cleveland, which will be for about 6-7 weeks, it is going to really kill us. We will have no income during this time and we can’t even afford the bills now that he is working. We can’t imagine what it will be like when he won’t be working. We don’t even know how we are going to manage. However, this idea was clearly put down and is not even an option because when we spoke to the doctor about this, the doctors at the Cleland Clinic expressively said that he had to remain with me the entire time or they will not be able to do the surgery. They said that I need to have a family member with me at all times or they will not do it and therefore, it gives my father no other choice but to stay with me or I will not be able to have the surgeries. So… that is more reason why we need fundraising and donations. We won’t be able to have any funds or any income for 2 months, which is such a long time. Our bills, especially my medical bills, are exuberant. There is no way we can afford not to work especially when we can’t even afford them when they are working. So if there is anything that can be done… please help. Sorry to sound like a broken record, but I am desperate. I am going to die without this surgery and all our funds are depleted and we sold everything that we could. Please help!!
I guess in the meantime I just need to try to keep up my strength and to try to keep going. I have my animals that are my best friends and I also am reading. I have the new SHOP-A-HOLIC book called SHOPAHOLIC TO THE STARS. So I plan on reading that.
Well… I hope that all is well with you. Thanks again for all your help. When I know more information, I will write again. In the meantime, have a happy holiday.