Es un “go!” Ya es oficial. Estoy muy emocionado, pero muy nerviosa también. Pero yo sé que todo va a estar bien. Yo estoy en el lugar correcto y todo va a estar bien. Este es primer paso de mi nueva vida. In other words… It is a “Go!” It is official. I am very excited, but also very nervous. Yet, I know that everything is going to be ok. I am in the right place and all will be ok. This is the first step of my new life.
Well… another day here in Beautiful Mexico and I have so much to say because I met with the doctors for the Ketamine Coma. I can’t believe how much has changed in just a day! First of all, my Spanish has greatly improved, which will come in handy especially now that we will be returning because the coma is an official “GO!” Even though I knew that it was going to happen before, it was never official until I met with the entire team and they all saw me because I always had a fear that once all the members on the team saw me… they were going to change their mind. I am so used to having my hopes squashed and having someone pull the rug out from underneath me. But I no longer I have to worry about that part because it is official… I will be undergoing the coma! It is a GO! Well it is a GO as long as I can pay for it!
What a day today has been. I have been so sick today. Between the traveling, my overall illness, and we think possibly I might have picked up something in Mexico; I am not doing too well. They always say don’t drink the water in a foreign country unless it is bottled or filtered. We have been extremely careful not to drink the water, as the only water substance I have had was a drink that did have ice in it once, but we asked if the ice was from bottled or filtered water and they did say “yes”. I also had coffee, which was boiled, which should have been ok as well. In addition, both were taken from the hotel, which we were told were definitely safe to drink because the hotel had safe water to drink. Although because my dad drank the exact same things as me and he is not sick, we are wondering if me being as sick as I am in general had anything to do with getting sick from the “water” even though it was filtered. We are wondering that since I am so sick in general with no immune system and everything… we are wondering if possibly I could have picked up something in the water that a normal person wouldn’t have.
I have been so sick with a severe stomachache and the bleeding worse than ever. I know my bloods are dropping, as I can feel myself weakening and cramping up. I was sick all day today, but it really got bad after we got back from the hospital seeing the doctors. I literally collapsed on the bed and couldn’t move. I couldn’t even make it downstairs for dinner. So we ended up having to call up room service. I still feel really ill, but I wanted to share all that has happened today, as I promised to keep you abreast on all that is happening.
Well… let me start with the important stuff. I will hopefully be changing my name to “ERICA” because Dr. Cantu in Mexico keeps calling me that and likes it better than my original name. He even told the other doctors today that my name was “ERICA” and they too agreed that my name should be ERICA and were calling me that too. So I told them that if they get me “well”, will change my name to my middle name. But in the meantime, I am known in Mexico as ERICA. It is my alter ego!
So like I said before… the Coma in Mexico is an official GO. I will be the 38th patient to undergo the Coma. I will be the first patient though to undergo the Coma in the new hospital, which will be Santa Engracia (CIMA) even though I will be having the same team as the one that did the other 37 patients. I am really excited to be able to have this opportunity, but I am really scared. I am not going to lie, but after meeting with the doctors today, I am more scared than ever about this Coma because of how dangerous and risky it is. But, when I think of the alternative, I am of course more scared of staying the way that I am because I am suffering so much, deteriorating so rapidly, and going to die. The life I have now is like living in HELL 24/7 and I don’t wish it on my worst enemy. In fact, I even asked the doctors at the very end even though they said that they were not going to “make up my mind for me” if they would go through with the Coma if they were in my shoes and they said “definitely.” They said, “In the state that you are, the benefits far outweigh the risks, but of course it’s your decision.” I always knew that I was making the right decision but needed to hear it from the doctors.
I met with the “team” of doctors that will be taking care of me today and never have I met such a nice and wonderful doctors. They are simply amazing. I can’t remember their names, but all I can remember is one doctor wearing these banana yellow sneakers. These doctors surely have unique personalities and characteristics that make them stand out. This Ketamine Coma is so very dangerous and extremely risky. The doctors said that if they thought before that they saw the worst case that could exist, I for sure have taken the trophy. He said that I for sure have the most complicated and severe case that they have ever seen. But, they are still want and willing to do it. We are just crossing our fingers that all will go ok.
These doctors were so incredibly knowledgeable about my disease and were so kind too. They spent so much time with us and we were not on a stopwatch. They went over everything with us thoroughly and made sure everything from head to toe on me was went over. They also told me that prior to the coma that they want like every test under the sun done because they want to know basically every number on me and every function of my body so that they can monitor me the best way possible. They know also how quickly my body can change in a second and therefore, they don’t want me to go for the tests until the last possible minute before the Coma. This way they have the most accurate results. They are taking the most precautions possible. They are even doing the Coma in such a top-of-the line hospital with state-of-the-art machinery, which includes this new machine that can monitor your abdominal organs. I forgot the name of it though.
When they met with me they examined me thoroughly in order to get to know me inside and out. The noticed also along with everything else that part of my jaw is missing. I do have osteonecrosis and had some of it removed, but it was inside and further up. It would definitely not have been where the doctors were noticing nor would it have been as noticeable as they were saying. But they saw how a huge piece of my jaw has just worn away from this illness. It is like my whole entire body is not only shutting down, but it is literally deteriorating. It is wearing away.
This Ketamine Coma is for the severest cases. We found out that when I come for the Coma, I will need 2 people here along with me. We had it planned that it was going to be just my dad and me, as we really don’t have many people who can go with us. My mom can’t go with us because she has multiple sclerosis and she can’t really travel. Plus, she has to stay home and take care of the business, the house, pets, etc. so we have something to hopefully come home to. This is going to be a great hardship on all of us and she has to do her best to keep everything going when we are away. We are planning to be gone for about a month or so, but it can easily go longer. The doctor said that there is no definite way of knowing how long I will have to be here for. He hopes that it will be only about a month or so, but if I run into complications (which is very possible because of the circumstances and how high risk I am), it will have to be longer. After all, there is no guarantee that they are even going to be able to extubate me when they want to. They might have to leave it in longer than expected because of the condition that I am in.
But fortunately, I have great cousins who are willing to come to Mexico to help out. I feel so lucky to be able to have them because without them, I would never be able to have this Coma. I must say that when the doctor told me that I would only be able to have this Coma if there were 2 people here along with me that I thought that this Coma was never going to be able to happen because no one was going to be able to come here. But when my cousin in Florida said that he would come, you can’t imagine the true relief and happiness that I felt. It was like a whole load of weight was lifted right off my shoulders. I don’t know how I can thank him. I owe him more than words can say or money can buy. After all, he is basically “saving” my life!!
My cousin only has to be here when I am extubated and for a few days afterwards because once I am “conscious,” I will need someone with me 24 hours a day. When I said to the doctors that my dad will be able to do it, the doctors said right away “there is no way your father can do it. This goes way beyond his powers. He has no idea how draining this is going to be. In fact, when you are in the Coma, it is important for him to rest as much as he can because he is going to definitely need all his strength and energy when you are conscious! He has no idea what he is going to be in for! It would even wear us down!!” For my superman not to be able to handle this… it has to be hard and a lot to handle.
The doctor said when I awaken that I will be suffering from the worst hallucinations, paranoia, etc. I will think that everyone is trying to hurt me. I will not even know anyone… not even the closest people to me such as my dad or even myself. I will not be able to drink or anything because I won’t know how. It isn’t guaranteed that this will happen to me, but it is most likely that it will. So I will need people that I am most familiar with and people I can recognize to help me through this very difficult time. I will suffer the worst nightmares for about a month or so after. He said that they are really horrible dreams too.
I will be given so much ketamine during this time I am in the Coma that the only way I will be able to survive it is if they completely shut down my body. That is why they are going to be putting me all on machines and on lines. I will essentially be having lines everywhere from central lines to arterial lines to catheters to ventilators to feeding tubes to others. I will only be kept alive on these tubes and machines. In fact, when I go for the Ketamine infusion in New York, I usually get about 200 mg. However, when I go for the Coma, I will be getting more than 5 grams. There is no way a human body could survive that amount without being put on machines.
As I am really sensitive and cannot even tolerate a simple IV line, I was a little scared about having all these lines in me. Dr. Cantu assured me though that I wouldn’t feel any of them, as he would put them all in when I am asleep. He said that he would just start the IV and put me asleep. Then, he will do the rest. So once I am under, he will then place the feeding tubes, catheters, central lines, arterial lines, etc. so I don’t feel anything. When I asked him if I would have all these things when I awake, he said I probably will have them but won’t really remember them. The last thing to go is the Central Line, and I will definitely remember that though because it stays in for some time. However, it only hurts getting put in and not while it is in or taken out. So the bad part will be done with.
The doctors said that due to the condition and state that I am in, it will be an extremely dangerous time for me. It is very possible that I can even die during this Coma, and they literally told me that flat out numerous times. There just is no way of knowing what will happen because of the state that I am in and how dangerous the ketamine coma is.
The doctors are extremely worried about me getting an infection because I will have all different lines in me, which are all sources of ways of getting a possible infection. They are scared because if I get an infection, not only will it affect me worst than a normal patient because my illness magnifies it and I have no immune system as it is, but I also am on antibiotics already and it will make fighting it off even more difficult. They are really afraid of getting pneumonia since I will be intubated.
In addition, they brought up that I might have to have a tracheostomy. I am so fearful of that and I really do not want that to happen under any circumstances whatsoever. But they said that my lungs are so weak and when I go on the ventilators, my lungs will weaken further and therefore, I might not be able to come off the ventilators. I am really scared because I am especially having a hard time breathing even now because they are so weak already. The doctors did say though that if I did have to get a tracheostomy, it hopefully would not be permanent, as once I get stronger and everything, it will be able to be removed. After all, when I come out of the Coma, I will hopefully be able to get more strength and not be this weak fragile thing anymore because I will be better and able to eat better. In the meantime though, I have balloons to blow up so that we can try to strengthen my lungs as much as possible.
In addition, Dr. Cantu is going to try to get me off most of my opioids prior to the Coma to hopefully make it easier to come off the ventilators. The opioids are also causing my lungs to weaken and will make extubating and coming off the ventilators more difficult. So we are going to try to come off the methadone. I don’t know how we are going to do this. With all the pain and suffering I am in currently, I don’t honestly know how I am going to be able to do this .Usually patients don’t have to come off of the drugs prior and they come off all the drugs during the Coma. This way they don’t have to worry about all the withdrawal symptoms and the body detoxes during that time.
Between getting everything organized, coming off the drugs, trying to get my lungs a bit stronger so I can come off the ventilators, giving my cousins time to get their things together and to get passports, as well as to get funds to be able to pay for this Coma, we had to push back the date of the Ketamine Coma. Even though I need it ASAP, we really had to take everything into consideration and when we did, the soonest we could do it was the end of April or beginning of May. So it is so important to start raising funds now because I don’t have that much time. The doctors are only hoping that I will make it that long. They are hoping that I won’t deteriorate much more, which is extremely taking a great risk because I am rapidly deteriorating. In addition, they want me to have all these tests before I go for the Coma so that they can have exact numbers on me and know my body inside out, which will also take some time. So… please mark your calendars… please pray for me… and please help me raise the funds that are so desperately needed for this procedure!
I was a little worried about my dad and the communication barrier when I was in the Coma because my dad doesn’t speak really any Spanish or understand it. The doctors said that they all (meaning the doctors themselves) speak English, but the nurses probably won’t. They said that my dad would be able to reach them though all the time and they only live within 5 minutes, if needed. They also said that they would make up cards with the most common phrases to give to my dad so that he would be able to communicate with the nurse and know what to say/ask. I did ask them if they would “sugarcoat” anything or be completely realistic with y dad no matter why. They told me that I had nothing to worry about because they said my dad will know everything that is happening… good or bad! That is one thing about these doctors… they are so caring.
Well… today (since it is already early morning) we are going for a tour of the actual hospital. The hospital we went to see the doctors at yesterday was just the hospital where their “office” was. The wife of one of the doctors on my team will be showing us around, as she is a critical care unit nurse. Dr. Cantu will be in the operating room today, but he said that he wants me to page him as soon as I get there so he will come out and meet us. I am telling you… I never met such a more caring team of doctors.
Before I left Dr. Cantu though he did say a few things to me. I looked at him and pleaded with him to please help me, but he said, “I don’t really need to convince him because he knows how much I need the Coma and how much I am suffering.” He said that he wants me to know that this Coma will “help” but it isn’t a miracle. It isn’t going to be like I wake up a totally “cured” person who is ready to conquer the world. It will hopefully put this disease into remission and I will hopefully regain my life, but it isn’t going to happen once I wake up. As he said to me… “small steps, but HUGE achievements!” Dr. Cantu also saw me smiling a little and he said that he wants me to “smile” more because he said that I am so “beautiful” when I smile and this smile will also bring positivity to me as well, which will help fight all this too.
We are going to the hospital in the morning because we are planning on leaving to go back home tonight. There has been a change of plans because we were supposed to leave Wednesday but due to the storm that is in the south, we decided to leave tonight instead. We didn’t want to leave Wednesday and hit the storm because we would most likely have our flights canceled and be stuck. That would be a disaster for me because I don’t have extra medications, I can’t be around a lot of people, and I really wouldn’t be able to stay in an airport for a huge amount of time like that, which can even be days. After all, they said that the storm is the worst that the South has experienced in 25 years because of the extreme cold and such. They are closing schools and canceling everything. There is even a gas shortage down there.
So we didn’t want to take the chance. So we had to pay additional money to come home earlier. Even though it is costing us, it is so much better because at least we know we won’t get stuck. I just hope my body will be able to do it because I can’t really walk at night and I am usually in my worst state at night, as the pain is then at the max. But at least we will be avoiding the south. Instead, we are heading to Mexico City and then having a straight flight to JFK. So we should be home by morning. After all, it is even going to be so cold here too. It has been in the 80s here, but today it isn’t going to be out of the 40s. Can you imagine? This winter has been horrendous!
I have had a great time with my dad while I am here though. I love being with my dad and having quality time with him. I also love the ‘warm’ weather. When we were outside today we heard these really weird sounds coming from the tree. We had no idea what they were. Finally we saw the bird that was causing it.
I have really been impressed with the mountains. They have been so gorgeous. One day I am going to be able to climb them. They are just so breathtaking! Since the weather has been so great, I have been able to go out a bit. We went sat outside a bit and even went to the mall for a bit. I really wanted to get a souvenir that said something with Mexico like a sweatshirt or something, but I got too sick and had to turn around. Maybe they will have something at the airport before we go back.
Since I have been so sick tonight, we ended up having room service because I was too ill to go out. It was so funny because dad had such a hard time speaking to them. All we wanted was eggs, coffee, orange juice, and an orange. Do you know it took them like an hour and 5 trips for them to understand that my dad wanted the actual fruit of an orange? They also ended up giving him a double order of his eggs. I couldn’t believe it. I must say though… just being here for 2 days… both of us do speak a lot more Spanish and we can communicate so much better. But don’t worry… by the time we come back, I am sure that will be all lost!
I don’t know if it is just me or if it is because I really don’t feel well, but nothing tastes or drinks right. According to dad, everything is fine but then again dad drinks and eats anything and everything that is edible. Even a diet coke doesn’t taste like the diet coke we get at home. Dad said it is because we are in Mexico and it is a “Mexican Diet Coke.” But I don’t know if he is serious or not. I can’t imagine foods and drinks that are the same like something like a diet coke tasting differently because they are actually different, but they do have different labels despite being the same.
Well… I guess that is about it. I will write again to let you know all that happens today and especially about the hospital. If I forgot anything about the Coma or what the doctors said, I will add it to the next email. I just am not feeling well and it has been a long day, so I might have forgotten some things.
Remember… Please help me get the very life-saving treatment that I desperately need. The bracelets r here and are $5. The bracelets come in 2 colors (pink or blue) and in youth or adult. If interested in buying or selling, please email at Femirsky@gmail.com. You can send a check via snail mail to the address I give you or deposit the money at my website and I will ship you the bracelet. However, I need to know your information such as your name, address, how many bracelets, and the color/size. So please email me if interested. All money goes towards treatment for my illness. Please share this link!
Hasta luego (Later)!