O my goodness. What a day I have had today. I made it to California. Yup!! I never thought I would, but I did. I have had such a huge 2 days. It really has taken a lot out of me… both the traveling and seeing all the doctors. I am so very sick from everything. I am writing not only to update you as to what is happening with me, but as a way or sorting through everything that is happening because I have to do something to get my thoughts together. I am literally freaking out with everything that is happening.
I guess I should start though by telling you everything from the very beginning. The flight to California was not easy on me by any means. We left New York and of course, we were delayed. It wasn’t a huge delay like we had the last time we went to California, but it still was something. We had huge rainstorms the night before we left for California and we were told that the crew had to “sleep.” Apparently, there is this rule that they have to be able to have a certain amount of hours of “sleep” and “rest” and due to the rainstorms the previous night, the crew came into the airport delayed and therefore, it cut into their “rest” period that they normally would have had before our flight would have taken off in the morning. So… we had to wait around and wait for the crew to “wake up” and arrive at the airport. In fact, every member did happen to arrive at the airport on time, even though the time was delayed, but this one crewmember didn’t. Even though the flight was originally delayed to wait for them, we still had to wait even longer because there was this one crewmember who still didn’t show up when she was supposed to.
Despite the delay though on the first leg of our trip, we were promised that everyone would make his or her connection when we arrived in Chicago. However, when we arrived in Chicago, it was not the case. The only reason that we made our connection was because that second part of our trip that would take us to San Francisco was delayed as well. Thank goodness because otherwise we would have definitely missed the plane.
The flight was horrible. I was very sick. My disease makes me extremely hypersensitive and the pain I was feeling throughout the trip was really intense. I can only wear a sneaker on one foot because the other foot is way too sensitive and too painful to even wear a sock on it, but it got to the point on the plane that we even had to remove the shoe on the other foot because it was “acting” up. I have the disease throughout my body, but my left leg/foot has it the worst. I really had a difficult flight because I was so very sick and uncomfortable. No matter what I did, I just couldn’t get comfortable.
To make matters worse, I had to go to the bathroom just when we were landing in San Francisco. Since I was already in the process of getting up and due to the nature of my disease, when I say that I “have to go” then I really have to go because I can’t really control my bladder when I get the sensation that I have to go. On the plane the seats were situated so that there were 3 seats on one side and 3 seats on the other, so I was in the innermost seat, which was the window. Therefore, it was really a big deal to get out of the seat and go to the bathroom because it meant that my dad and the other person had to get up so that I could get “out” to the aisle, and my dad also had to go into the overhead bin to get my crutches since I cannot walk without the aid of them. However, just when I was doing so, the pilot came onto the overhead speaker and announced that we were making our “final” descent in San Francisco and to buckle up and prepare the cabin for landing. However, I still had to go to the bathroom.
I instantly ran to the bathroom even though this message came across the loudspeaker. The flight attendant was right outside the door preparing the cabin and he told me to “hurry up because it was unsafe to be up at this time.” Gosh… you never can go to the bathroom fast enough when you need to. I had visions of being stuck in the bathroom during the landing, which kinda was freaking me out. I tried to go as fast as possible, but it didn’t feel like I was moving fast enough because I could feel the plane really descending fast since it was making its “final” descent. Luckily, I managed to finish what I needed to do and made it back to my seat right before touchdown. However, I couldn’t believe the timing of everything that was happening. Gosh… things always occur at the worst of times. When I got to my seat, my dad was like “Was it clean in there?” I couldn’t believe my dad was even asking me this. I was like “I didn’t really have time to inspect.”
So I made it to California and of course the traveling took a huge toll on me. I literally collapsed when we got to the hotel. I was so sick that I couldn’t even muster the strength to eat anything or move. My dad however, knew how important it was that I ate, so he literally forced me to go downstairs for dinner. After all, he said that I couldn’t afford to lose even an “ounce.” I barely weigh 70 lbs. and therefore every pound is important. I knew that it was so important to eat, but I just wasn’t feeling well. But, my dad was on my case so and he made me go down and eat. I was just so sick, weak, and in pain from all the traveling. All I did was not want to move. I had visions that I was going to end up in the hospital with the way that I was feeling.
Anyway, I made it through the day and night and I had all my doctor appointments today. I went to Stanford Medical Center today and met with my “team” of doctors. Gosh… I met with so many doctors today and so much has happened that my head is literally swimming with information. So much has happened, and I didn’t receive the best of news. After all that has happened, I didn’t feel like talking to anyone. I really didn’t want to talk to anyone because of the news that I received and with everything that I was going through. But, I knew that everyone cared about, especially how people did give me their phone numbers to text them to tell them how things went, so I knew how important it was to tell them what happened because they “cared.” That is why I am “updating” my site as well. I know you care and therefore, I don’t want to leave you out of all that is happening. Why should I shut all the people that care about me out when this is the time that I can really use them to lean on?
I went to the hospital today because I was going to meet with the Gastroenterologist, Anesthesiologist, Neurologist, autonomic dysfunction doctor, etc. I have surgery on Monday and I also had a pre-op appointment as well. Gosh… these doctors are really amazing. I never had such amazing doctors before. All these doctors are really smart, very knowledgeable, have excellent bedside manners, will answer all your questions, etc. The only part that stinks is that I have to travel to the other side of the country to see them. But at least I can say that the traveling is well worth it. These doctors literally go out of their way to see me. Some of these doctors didn’t have appointments today, as they didn’t see patients on Fridays. However, they made it so that they would see me. I couldn’t believe how they went out of their way to actually come into their practice to see me. I even had doctors cut their “vacation” short so that they could see me as well. Who could ask for better doctors?
It wasn’t just my doctors who were amazing. The entire hospital is amazing. All the doctors there at the hospital are willing to help you out in anyway possible. We got lost one time and one of the doctors literally used his phone to call up information to find out exactly how to get to the doctor we needed to go. Then, he actually took us. I couldn’t believe it. This hospital is just simply amazing. I am so surprised about this hospital because they actually let the patients go outside. They even take patients out in their beds. I couldn’t believe it. I guess it is because the weather is so beautiful and everything. I can finally enjoy the weather here because it isn’t too cold or too hot. There isn’t any wind to actually bother me either. It really is beautiful. I wonder if it ever really rains here because some of the hospital wings and hallways are actually kinda outside. I can’t imagine it raining because how would you walk through these hallways. I asked a nurse and they said that it rains sometimes, but only for 20 minutes at a time. What a huge difference in weather it is from San Francisco because we will literally go from being at the hotel in San Francisco in 60-degree weather to Palo Alto, where the weather is in the 80s. It is beautiful.
But, I guess what makes the hospital top-notch is the staff. The doctors stay with you for so long. They never push you out and they never shun you away when you ask a question… no matter how stupid it may be. I literally stayed with each doctor I met today for like 2 hours. My dad and I couldn’t believe the time that they dedicated to us. It really made us feel very comfortable with how much time they gave us, how they didn’t rush us out, and how they thoroughly explained everything… no matter how stupid the questions may have sounded.
The first appointment that we had was with the gastroenterologist. It turns out that the surgery on Monday is really long and going to be a really big deal on me. It is going to be 10 hours long and it will be under general anesthesia for the first part. They are going to be investigating how my intestines function and to see exactly if a transplant is needed. Even though they kinda have a 99.9% certainty that it will be needed, they want to be 100% sure before they proceed with it because it is a very radical, risky, and rare transplant. This transplant is extremely dangerous and runs the highest rate of rejection out of all transplants. It isn’t an easy transplant either. It will require many months in the hospital afterwards. Only 8 hospitals in the country perform this transplant… Stanford being one of them. Also, it hasn’t really been done a lot so far and it mainly has only worked in pediatrics. So… they are still kinda hesitant to do it because it isn’t really a “successful” transplant. However, in my case… they really don’t have a choice. My organs are so far gone that I need a new stomach, esophagus, small intestine, and large intestine. So… we will see what happens afterwards.
According to the doctor though, they are really scared for my life and I am literally dying. They are even scared that I am not going to make it much longer because of my weight. Even if I do go for the transplant, they would like for me to gain some weight since it is nutrition and weight that helps you heal. If I was to go for a mega operation such as the transplant, they would want as much “weight” and nutrition in me as possible because I will definitely need that to recover. At the weight that I am at now, it would make it extremely hard for me to recover, especially when my BMI is less than 12.
As a result, the doctor wants to put a tube in me that will go from my nose to my intestines. They really don’t have any GOOD options with my situation, but the doctor said that we have to go with what we have because something has to be done and our hands are really tied. The doctor said at this point, we only have 2 real options. One is to have TPN and the other is to have this tube put in me. The doctor feels that with all my other situations and illnesses, the tube would be the better option because the TPN and surgery to put the ports in would only stir up my disease and cause further havoc on my body. I have already had TPN and it wasn’t a pleasant experience. They had to remove it because it caused my disease to worsen.
The doctor said that even though both are not good options, the tube is the better option because at least it wouldn’t be a huge unnecessary operation for no reason. The doctor would place a tube in me, but it would also mean that I would be “starving” for about a week. The tube would be in me for a week and if it works the way they are hoping, then they would do a huge operation to surgically put the tube in. During the week that they are “trialing” the tube, I won’t be able to eat though, so they will be essentially starving me.
Due to my severe gastroparesis, my stomach and intestines do not work. Therefore, the tube will be bypassing my stomach and going into my intestines directly because nothing passes my stomach and my stomach doesn’t empty. However, my intestines don’t really function either, as they are paralyzed as well. So, they will have to really limit the amount of “food” they put in the tube. They are talking about only being able to put in about 10 cc of food per day, which is only about 300 calories. I will only be able to have that amount of calories, as I won’t be able to eat anything by mouth because I can’t vomit. Since every time I eat I end up vomiting, I will not be allowed to eat during this time because they wouldn’t want me to vomit up the tube. So… essentially I will be “starving” during this time. Even though it is only going to be 300 calories per day, at least if I am able to tolerate that amount and able to surgically implant the tube, I will then be able to get the 300 calories by tube (which hopefully they may be able to increase at a later date) and I will also be able to eat by mouth because even if I vomit, I won’t be able to pull out the tube.
I am really nervous about this procedure because I don’t want to have the tubes. My intestines are severe paralyzed and therefore I am scared that everything is just going to collect in my intestines and form a “bag” there like it has done in the past. It is really uncomfortable because it has nowhere to go and as a result, I become bloated and I look and feel pregnant and such. My stomach becomes so distended and I am so very uncomfortable. I know it isn’t just me seeing or feeling this because even other people can see and have commented on how “distended” my stomach is. Plus, when I am distended and really uncomfortable, it really stirs up my neurological disease and causes breathing difficulties because I am so very hypersensitive. So… it really is a big decision.
However, I really don’t have a choice because there really isn’t a choice. I am at a very dangerous weight and I am going to die unless I gain some weight. Plus… if I go for the transplant, I definitely need to gain some weight and get some nutrients into me for “power” to heal and recover. The doctor said that if I was to go for this procedure, I would be sedated and such when they put the tubes in because it isn’t an easy procedure. It is much more difficult than putting in a simple Nasogastric (NG) tube that people have that goes from their nose and into their stomach for feeding since this actually has to bypass the stomach by going through it and such, and then going into the intestines. The doctor also said that she would work with me by shutting off the “feeds” and even slowing them down to give me less if needed if I felt that I was bloated or distended. Even if I wanted to “stop” the feeds, she said that she would do it. But, she wanted to at least “try” the tube because there really wasn’t any choice.
So… it looks like I have no other choice. She wants to do this procedure as soon as possible. However, it also depends what she sees during the surgery on Monday. If she sees absolutely no contractions whatsoever or such, then she is going to call it. So… it still matters what happens on Monday before anything is fully decided. In a way I hope that she doesn’t see contractions because I really don’t want to go through this. But, I know that I have to do everything that is possible, so I have no other choice. I am just afraid because I had an NG tube a little while ago and it had to be removed because it was “backing” up after only less than a quarter of a liter was put in. But, since this is bypassing the stomach, perhaps it will be a little bit better in receiving the food. The doctor is also hoping it will help to use this “predigested” food, which should he easier to pass and not make me as distended or bloated. But, everything is up in the air and a trial.
So… we shall see. If it is a “go” though for this procedure, it looks like I will be returning again in another 2 weeks to have this done. Gosh… this place is starting to be my “home away from home.” Every time I get to go home (back to New York), I have to turn right around and come back to California. But, time is of the essence and therefore, it is imperative that I get back and have this all done as soon as possible. After all, I can’t live at this weight and my body is shutting down. Plus, it makes anything that I do (even going for ketamine) even more dangerous when I am at this low weight.
The next appointment was with the anesthesiologist because I had a pre-op appointment since I am scheduled to have surgery on Monday. I am really nervous to have this surgery because it is one HUGE surgery. To think though… they aren’t even going to be correcting anything during this operation either. They are just going to be using this operation as a way of “investigating” and “testing” what is going on with my intestines and other parts of my digestive system. I hate to think though that this is a 10-hour procedure and it is so intense. I never would have thought that a “test” could be like this. But, I guess it can.
Due to my complex situation and the nature of my illnesses, the doctor (surgeon) is really scared. I found out that I am not even getting the “ordinary” anesthesiologists. Instead, they are giving me the “best of the best” anesthesiologists and there aren’t even going to be just one of them in my room. Due to my complicated history and all the potent medications that I am on, they want to make sure that I am in “good” hands and that they will be able to handle me if a crisis would occur. After all, in my situation and the way that I am at, it is very possible for a crisis to occur because I am very high risk and take a lot of potent medications that are not usually used everyday in normal patients. Therefore, they need to bring in the BEST doctors in case a crisis should occur because they will be better equipped to handle it if and when it should occur. I also found out that they are bringing in other specialists to monitor other parts of me because due to my complicated nature, they don’t want one doctor monitoring more than one aspect of my condition. There is so much that can go wrong that they are dividing the tasks up among each other. After all, I am not only on potent medications, but I suffer from autonomic dysfunction, which can bring a whole host of problems. I also change colors in a split second and they have to be ready to act if anything should happen.
I am really an extraordinary case that they don’t see everyday. They had to have a meeting just to figure out what medications I can take before the surgery since I am on so many medications already and I need them for various aspects. They wanted to eliminate as many meds as possible because they didn’t want a chance of them over sedating me or having interactions or anything else because it could really cause HUGE problems and even kill me. Therefore, they went through each and every one of my meds as a “team” and tried to only give me the necessary meds. They wanted me to continue all the opioids such as the methadone, morphine, etc. because they were scared that I was going to go into withdrawal. They also wanted me to take all my lung medications as well. However, we also ran into the problem that I can’t eat or drink anything after 10 PM the previous night and the only way I could take my pills in the morning is by having soda with them because of the carbonation. They really didn’t want me to have soda, but there wasn’t any other way. Even with carbonation… it is getting to the point that it is extremely difficult to get the pills down, but at least I have a “chance.” Without the carbonation, I have not a chance. So… despite them not wanting me to drink the soda, they said that I really had no other choice, but they only wanted me to take “sips” of the soda (the bare necessities) to get the pills down. It only adds to how much more complicated and riskier I am making the operation, especially since I have the severe gastroparesis already because they want my stomach as “empty” as possible and my stomach doesn’t empty as it is. Even with the length of time that they have given me that I can’t eat or drink before surgery, they know if is not nearly enough time to “empty” my stomach because I need a lot more time whereas the normal person probably could “empty” their stomach in that time. That is why they usually tell people don’t eat or drink 6 hours before a procedure. But… in my case where my GI system is so paralyzed and doesn’t move… I need days notice.
Due to my poor bloods that I have been having, the pre-op team took more bloods on me. They wanted to get reading on my heart bloods, especially since they were very low when I came here. My heart bloods were so low in New York that I really should have been in the hospital. However, the doctors were more concerned about getting me to California and they knew that if they hospitalized me, I probably wouldn’t get to California. Plus, they knew that I needed to be in the hands of the doctors in California because it probably wouldn’t do any good being in the hospital in New York since they really didn’t know anything. So the doctors just hoped and prayed that I would make it here.
When I do go for the surgery though, they will going to be giving me ketamine in addition to everything else. Ketamine is very potent and it is needed to hopefully keep the disease at bay. After all, the more trauma that occurs to me, the more likely it is that my disease will spread and get worse. Even the most innocuous hit can spread the disease. However, the more harmful of course the more chance of it spreading and surgery is very traumatic. So, with everything happening to me, the doctors are going to be giving me ketamine in addition to all the other drugs when they put me under for the surgery.
My next appointment after the pre-op appointment was with the neurologist. He specialized in autonomic dysfunction. We spent so much time with the doctors beforehand that we really didn’t have to leave the hospital at all. We thought that we would have a “break” before we would see the neurologist, but due to the doctors and the pre-op appointments taking so long because they were so thorough and spent so much time with us, it was basically time for the neurologist when we were done with the pre-op appointment. I couldn’t believe how two appointments took literally 4 hours. I guess it just showed how much the doctors and staff at this hospital “cared!”
To be quite honest with you… I am not quite too fond of neurologists. I really don’t have a “liking” for them because they really don’t know quite what they are doing and they usually make up some BS or something. However, I must say that the neurologist that I saw today was just simply amazing. Even my dad said so. I even told the doc that as well. I told him how I normally don’t care for a lot of doctors, but I really liked him. He was so knowledgeable about his field… it was simply amazing. In addition, he was really nice. I didn’t feel like he was “messing” around with my head, as most neurologists usually do. My dad couldn’t get over how informative he was and how much time he spent with us, especially when he normally didn’t have office hours today. He made special arrangements today to see me, which was really nice of him. I couldn’t thank him enough.
With all the testing that he did and investigating, I am really surprised that what he found and what he is further investigating was never looked into further beforehand. I mean… how could all the doctors that I have seen in the past miss this? From what I brought the doctor from New York and from what he examined me, he saw so many things wrong with me. He knew exactly what I was talking about as well, which was great because not a lot of doctors know what I am talking about when I tell them what I am experiencing. In addition, even though I experience a lot of things, I am not always sure of as to “why” I experience it. It was finally nice to have explanations as to what exactly is going on because he was the first doctor to basically be able to sit down and explain things to me. So… not only did he know what I was talking about, but he understood me. I didn’t feel like I was talking to a brick wall.
To begin with… The doctor noted that I have a very lazy right eye and it cannot focus. When he looked inside the eyes, he saw the damage that was being done by the brain tumor. Therefore, after examining me and seeing the vision disturbances that I was suffering from such as the double vision, blurriness, as well as the headaches, he said that the brain tumor that I am suffering from on the pituitary gland will most likely have to come out. The doctor said, “At times we can do a wait and see approach, but with you we cannot do that.” The reason that they cannot do that is because of my complex medical condition and they don’t wanna wait and watch it get worse, especially when it is this bad already. Plus, I am taking medication for my severe gastroparesis already that “feeds” the brain tumor and makes it get bigger. Therefore, they kinda don’t really have a choice but to remove the tumor. Never a dull moment, right?
Of course removing a brain tumor is not “easy” task. The doctor is having me meet with the neurosurgeon the next time I come back, which like I said before will probably be in 2 weeks. They aren’t sure if they are going to open my skull completely to remove it or if possibly they can remove it through gamma knife. Everything is just up in the air. All we know is that it most likely has to be removed… especially with all the problems that it is making.
The doctor examined me and my blood work and didn’t like what he saw. The doctor said that I am literally dying because my organs are shutting down. Based on my blood work and such, I am not getting oxygen to my organs and therefore, they are shutting down. He also saw that my white count is very very very low and that other vitamins are especially low. But you wanna hear something amazing? Even the doctor was impressed by this because despite how little I weigh and everything… I am not “malnourished.” He couldn’t even believe it himself. But, my albumin is not low, and I am getting adequate proteins and everything. So… the doctor said “I don’t know what you are doing, but you must be doing something right.”
However, there are values that were really low that certain be. Some values that were really low included my white count, B6, B12, calcium and Coenzyme Q10. We think it is because I am not absorbing. However, it is very dangerous to have these values really low because they are essential for the body to survive. The doctor thinks though that part of the reason that they might be so low is because of the fact that I have too little mitochondrias in my blood and they are intoxicating me.
My Coenzyme Q10 is extremely low. Coenzyme Q10 is produced by the human body and is necessary for the basic functioning of all cells. It is known to be highly concentrated in heart muscle cells due to the high-energy requirements of this cell type. The body’s cells use coenzyme Q10 to make energy needed for the cells to grow and stay healthy. The body also uses coenzyme Q10 as an antioxidant. An antioxidant is a substance that protects cells from chemicals called free radicals. Free radicals can damage DNA(deoxyribonucleic acid). Genes, which are pieces of DNA, tell the cells how to work in the body and when to grow and divide. Damage to DNA has been linked to some kinds of cancer. By protecting cells against free radicals, antioxidants help protect the body. In addition, it shows that I have no immune system.
I also was told that my calcium level is extremely low. It might explain why my bones are deteriorating so badly. However, even though I am trying to consume the calcium, I cannot absorb and therefore, that is why my calcium level is so low. I am even getting calcium deposits throughout my body that there are like “marbles” throughout my entire body. I never knew what those marbles were, but now I do. It could all be related to the calcium level not being absorbed. After all, I can take my pills in the morning and then throw them up after dinner. The pills will literally come out unabsorbed. They will come out whole. It is really unbelievable that it is like over 12 hours and it looks like I just took the pills and never swallowed them.
The doctor also examined my reflexes and it appears that I have no reflexes whatsoever. Something is definitely going on because it is definitely not normal not to have ANY reflexes. After all, reflexes help protect your body. A reflex is a muscle reaction that happens automatically in response to a certain type of stimulation. Certain sensations or movements produce specific muscle responses. When you don’t have any reflexes, it surely shows that something is wrong in your nervous system.
The doctor did all these weird tests that I never had and discovered things that I never knew that I had either. I am surprised that doctors in New York or any place else I traveled never picked up on any of this because I went to really good hospitals before too, but they weren’t nearly as great as Stanford. The doctor saw that I twitched and has spasms. The doctor said it was partially due to the brain tumor, but it is also due to my organs and cells not getting enough oxygen.
The doctor also noticed that I had brown spots and severe atrophy in my throat and tongue. It meant significant things and showed that I had difficulty swallowing.
When taking into account of everything that I am suffering with, the doctor thinks I can be suffering from another disease that would clearly explain everything that I am suffering from. It is a very rare disease, but it would certainly explain everything. However, the only thing is that people with this disease don’t live past the age of 50 definitely. There is no known cure for this disease. The doctor is testing me for this disease as we speak because we have to know if I have it. When I asked the doctor “what does his ‘gut’ tell him in terms of whether or not I have this illness?” you know what he said? He tried to make me laugh and he didn’t want to make me panic one way or the other without having all the facts, so his answer was “my professor always said ‘don’t go with your gut because you know what it is always filled with, right?’’” You know what he was referring to… right? I will give you a hint… sh*t!
The disease that the doctor thinks I might have is called MNGIE. I can’t believe with all these symptoms that he found that no other doctor has ever picked up on it. Mitochondrial neurogastrointestinal encephalopathy (MNGIE) is a rare, inherited, multisystem disorder that affects the gastrointestinal (digestive) system and neurologic (nervous system) function. The main characteristic of MNBIE is the body’s inability to move food through the body (gastrointestinal tract) or to absorb nutrients from food causing extreme weight loss and wasting of the muscles.
Mutations in the TYMP gene (previously known as ECGF1) cause MNGIE disease. This gene provides instructions for making an enzyme called thymidine phosphorylase. Thymidine is a molecule known as a nucleoside, which (after a chemical modification) is used as a building block of DNA. Thymidine phosphorylase breaks down thymidine into smaller molecules, which helps regulate the level of nucleosides in cells. TYMP mutations greatly reduce or eliminate the activity of thymidine phosphorylase, and a shortage of this enzyme allows thymidine to build up to very high levels in the body. Researchers believe that an excess of this molecule is damaging to a particular kind of DNA known as mitochondrial DNA or mtDNA. Mitochondria are structures within cells that convert the energy from food into a form that cells can use. Although most DNA is packaged in chromosomes within the nucleus, mitochondria also have a small amount of their own DNA. Mitochondria use nucleosides, including thymidine, to build new molecules of mtDNA as needed. A loss of thymidine phosphorylase activity and the resulting buildup of thymidine disrupt the usual maintenance and repair of mtDNA. As a result, mutations can accumulate in mtDNA, causing it to become unstable. Additionally, mitochondria may have less mtDNA than usual (mtDNA depletion). These genetic changes impair the normal function of mitochondria.
So, the doctor is investigating a lot of things since he discovered plenty of things that were wrong with me and were never looked into before. I won’t know if I have that rare disease for about 2 weeks, but other blood workups should be back before then. As soon as I know something, of course I will let you know. I am so very nervous because even though it will explain a lot of stuff if I have this illness, it will make it certain that I will definitively not live past the age of 50 and my life will only further deteriorate with no hope of it getting better. There is a stem cell and bone marrow transplant that can be done, but it is risky and it isn’t like it is so easy to get a donor. Plus… all it would do would hopefully slow down the progression of the disease. Without it, I will continue to suffer and my life will be much shorter then I ever intended it to be.
In order to investigate everything that has been going on with me, the neurologist sent me for bloods. These were more bloods that were taken in addition to the blood I already gave earlier when I went for pre-op. When I went to go and get the bloods drawn, the phlebotomist told me to wait until he figured everything out because he thought that he had “duplicates” of the test tubes that he had to draw because he had so many to draw. Little did he know that he was going to come back to me so quick because there wasn’t any duplication whatsoever? The phlebotomist had to draw like 15 vials of blood on me, and that was on top of the 3 vials of blood they drew on me earlier. I almost freaked out because of how much blood that they had to take out of me. I didn’t think I was going to have that much blood in me without passing out. No one, not even the phlebotomist, could believe that I needed that many bloods drawn. When I called home to tell my mom what was going on, my mom even and brother even said “I didn’t know you had that much blood.”
Of course they couldn’t get it out of the same vein though. With so much blood being needed, I had to be stuck twice (not including the time I was stuck earlier) because the vein collapsed after giving so much blood. I guess there was only so much blood a vein could give. The Phlebotomist felt bad that he had to poke me again because he knew how hard it was on me. I am so hypersensitive due to my illness and a simple needle stick is like someone sticking a knife in me. I literally felt like a human pincushion. With everything happening and being stuck so many times, it was really flaring up my illness and I was in so much pain and agony. I couldn’t wait to get back to the hotel.
However, before we could even go back to the hotel room, we had to stop at the pharmacy as well. It turned out that when I went to the neurologist, he was able to access the bloods that were drawn earlier today for the Pre-Op. It turns out that my bloods dropped even more from when I was in New York and I really was in the danger zone. It was even more dangerous too because I am supposed to have surgery on Monday and I can easily go into cardiac arrest or have an arrhythmia at this value. My value is literally like 2.8 and a heart attack is surely likely to happen and your heart is likely to go at values of 2.6 and below. So… it is really walking a tight rope at this value.
As a result, the doctor called in some medication for me to take in hopes that it will bring up my values. Everyone is scared that something is going to happen to me, including my dad. My dad went around to all the doctors today saying, “Remember… my wife said ‘don’t come home without her.’” I was even more nervous because not only were my bloods low before we left the for California and I had a risk of going into cardiac arrest and having an arrhythmia at that level, but now they were even lower. How much can a body take, especially when it is under the stress of surgery? After all, with blood values this low, it can’t beat right.
I couldn’t believe it also that when I was walking out of the hospital today that I received a phone call from the anesthesiology team. They were calling to inform me about my bloods and how low they were. I told them that I was aware of the situation and I told them how my neurologist just gave me medication to try to improve the situation. They wanted to try to keep me out of the hospital because if they gave me the medication through IV, it would really cause havoc on me and burn up my veins. It is really torturous to the “normal” person… let alone me who is much more hypersensitive. So… they are just hoping that the pills will do the trick. They said that before the surgery on Monday, they will give me some of the medication for my heart by IV as well to try to bring it up. I really thought that they were going to cancel the operation because of how low my bloods were, but this is Stanford… they are used to things like this. They are used to treating the most urgent cases and the most complex cases. After all, they don’t call it one of the TOP hospitals in the country for nothing. U know? If this was New York, I am sure that they would have definitely canceled me. Thank goodness they didn’t because it would have been a shame to travel all the way here for no reason. U know?
I am getting a lot of chest pains tonight, but I don’t know how much is nerves, because of my bloods, and what is because of my illness. I just hope it goes away. The doctors did tell me that if anything felt “funny” to come right back to the hospital because my bloods are so bad. After all, when it comes to your heart, you can never be too careful.
Gosh… what a day we had today. It was definitely a LONG and tiring day. By the time we got back to the hotel, it was after 7. To think… we were gone the entire day. We couldn’t bring back the rental car because it was closed and therefore, we had to park the car at the hotel. Thank goodness the supervisor was really nice and said we didn’t have to pay for parking because parking is $50 a night. Everything is just so expensive.
Even with the break that the hotel gave me, everything is just so expensive. Thank goodness the hotel did give me a discount because it really did help. However, with all these trips to California needed, I really don’t know how I am going to afford it without the help of others. Therefore, it is imperative that I get aid from others. If you have any suggestions on raising money, please don’t hesitate to leave me a comment on this page or you can email me at Spunkyfal@aol.com. Any help that you can give me would be much appreciated because my life depends on it. Even $1 would definitely make a difference because each $1 adds up.
Thank goodness the hotel also gave me a discount because I really enjoy staying here. The staff is really nice and they really make me feel “at home.” I am really going through a lot and they really have gone out of their way to make my dad and my stay as “easy” as possible. They will do whatever they can to make it better. They are extremely nice and always talking to us and even the talking to us and showing us that they “care” really makes a difference.
My dad has really been one amazing dad. Not only is he my “dad,” but he is my best friend and my hero. He really doesn’t have to do what he does, but he does it because he loves me. I can’t thank him enough. I try to do whatever I can for myself because even though I am “sick,” I am not “useless.” However, my dad won’t let me lift a finger. He is so protective over me. Thank goodness for dad though.
I really wanna get better… not just for me, but for my dad. I see it in his eyes how much it hurts him that I am sick. I see that he wants to help me out so much and yet… no matter what he does, he can’t do anything to help me. He knows his hands are tied, and I know that hurts him more than anything in the world. He is always saying how he “wishes he could take this away from me.” I tell him though that he wouldn’t want it because he wouldn’t be able to handle it. He would give it back in a second because it is the worst thing ever. I never get a break from this illness. I am suffering in agony 24/7 365 days a week. The pain is excruciating and I can’t take it anymore. Yet, I hold on because I don’t wanna leave my dad and I am holding on and hoping that I will get better so that I can become a doctor so that I can help others and make them better.
I am really nervous for Monday, and I know it will be here sooner than I think. I just hope it isn’t too painful. Even though they will be doing the first part of the surgery under general anesthesia, which is when they put the probes into me and the tubes, they said that when I wake up that I will have the tubes coming out of me. The doctor said that they will try to make me as comfortable as possible, but I don’t know how comfortable that can be with all that coming out of me. The first part of the surgery is 4-5 hours and the second part of the surgery is about 6 hours. The hospital is really high tech in that all patients go on a board with a light next to their name. Depending on the state of what is happening in the OR such as if they are getting put “under,” being operated, being “closed,” etc. the light changes colors. This way people (family members that are waiting) can know exactly what stage the doctors are on and what exactly is happening in the OR. It kinda takes the anxiety and the unknown out of the situation. U know? I told my dad that he better remember which light is which and not go anywhere.
I also have to decide which I want to go with next. Should the next trip out be to Florida for the ketamine coma or should the next trip out be to California for the trial of the tubes (so that possibly I can get the surgery to permanently put the tube in) and see the brain surgeon as well? Everything is just so complicated. I don’t know which is more important. I asked the doctors here which I should do and which is more important, but they said that they don’t really know because they aren’t “experts” in the ketamine. However, my dad and the doctors know that both are urgent issues and if I am not helped in either way… I can easily die. They both know that they both revolve around each other and they both cause each other as well. So… in a way, it is like a cycle…. One thing causes the other. It is just… which do you stop first? I am undecided because even though I know how dangerous it is with these GI issues, who knows if this isn’t a lost cause without going for the coma first because the neurological disease could be causing this to happen and therefore, no matter what is done… you could be getting no where because you are not helping the “root”… u know? Plus… there is a possibility that with the ketamine coma that it could help the GI issues as well. We just don’t know what the ketamine coma will actually do. If I went out of the country to have it done, I would have a 40% chance of being completely cured because the amount of ketamine that I require is not FDA approved. However, I am currently awaiting the coma in Florida because the coma out of the country in Santo Domingo is still awaiting approval by the IRB board. Also, even though I go for comas in New York, the coma in Florida is supposed to be at a higher dose, so hopefully it will be more helpful.
After talking to my dad though, he thinks that I should come back to Cali first though and take care of my GI issues because he is too afraid that since the ketamine is so risky and dangerous that it will be even more riskier because of the more GI issues and I won’t survive it. Plus… if I don’t gain weight or get oxygen in my blood and to my organs soon, I am going to end up dying. But… I guess nothing can be officially decided til after the operation on Monday. So… just have to hang in there til then.
Well… I guess I have really given you a lot of information to digest. If you think you were just told a lot, you should see how I am. I feel like I was just run over by a cement truck. But… I will come out of this like I always do. They don’t call me WAR HORSE and the ENERGIZER BATTERY for no reason… right? I get a “break” the next two days (Saturday and Sunday) because nothing is happening on the weekend. So… as long as I feel ok and my body holds up and I don’t end up in the hospital, I should be ok. Maybe I will be able to get out and enjoy San Francisco if my disease doesn’t limit me too much. I really would like to see the Sea Lions. Last time I got halfway down the pier, but due to my sensitivity of my illness, we had to turnaround. There is so much I really want to do in San Francisco like go to Alcatraz, go to the Golden Gate Bridge, etc., but it is literally impossible to do with my illness. I am making a bucket list so that when I get better, I am going to do all this stuff. I already told my dad that the day I get better, we are going out “drinking” because I never was able to have a drink since I am on so much medicine. I would love to try a “drink” and plus… it would be a great way to celebrate.
Well… until next time. Thanks for all your continued wishes, support, and encouragement.